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• What Is Qualitative Research? | Methods & Examples

What Is Qualitative Research? | Methods & Examples

Published on June 19, 2020 by Pritha Bhandari . Revised on June 22, 2023.

Qualitative research involves collecting and analyzing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research.

Qualitative research is the opposite of quantitative research , which involves collecting and analyzing numerical data for statistical analysis.

Qualitative research is commonly used in the humanities and social sciences, in subjects such as anthropology, sociology, education, health sciences, history, etc.

• How does social media shape body image in teenagers?
• How do children and adults interpret healthy eating in the UK?
• What factors influence employee retention in a large organization?
• How is anxiety experienced around the world?
• How can teachers integrate social issues into science curriculums?

Table of contents

Approaches to qualitative research, qualitative research methods, qualitative data analysis, advantages of qualitative research, disadvantages of qualitative research, other interesting articles, frequently asked questions about qualitative research.

Qualitative research is used to understand how people experience the world. While there are many approaches to qualitative research, they tend to be flexible and focus on retaining rich meaning when interpreting data.

Common approaches include grounded theory, ethnography , action research , phenomenological research, and narrative research. They share some similarities, but emphasize different aims and perspectives.

Note that qualitative research is at risk for certain research biases including the Hawthorne effect , observer bias , recall bias , and social desirability bias . While not always totally avoidable, awareness of potential biases as you collect and analyze your data can prevent them from impacting your work too much.

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Each of the research approaches involve using one or more data collection methods . These are some of the most common qualitative methods:

• Observations: recording what you have seen, heard, or encountered in detailed field notes.
• Interviews:  personally asking people questions in one-on-one conversations.
• Focus groups: asking questions and generating discussion among a group of people.
• Surveys : distributing questionnaires with open-ended questions.
• Secondary research: collecting existing data in the form of texts, images, audio or video recordings, etc.
• You take field notes with observations and reflect on your own experiences of the company culture.
• You distribute open-ended surveys to employees across all the company’s offices by email to find out if the culture varies across locations.
• You conduct in-depth interviews with employees in your office to learn about their experiences and perspectives in greater detail.

Qualitative researchers often consider themselves “instruments” in research because all observations, interpretations and analyses are filtered through their own personal lens.

For this reason, when writing up your methodology for qualitative research, it’s important to reflect on your approach and to thoroughly explain the choices you made in collecting and analyzing the data.

Qualitative data can take the form of texts, photos, videos and audio. For example, you might be working with interview transcripts, survey responses, fieldnotes, or recordings from natural settings.

Most types of qualitative data analysis share the same five steps:

• Prepare and organize your data. This may mean transcribing interviews or typing up fieldnotes.
• Review and explore your data. Examine the data for patterns or repeated ideas that emerge.
• Develop a data coding system. Based on your initial ideas, establish a set of codes that you can apply to categorize your data.
• Assign codes to the data. For example, in qualitative survey analysis, this may mean going through each participant’s responses and tagging them with codes in a spreadsheet. As you go through your data, you can create new codes to add to your system if necessary.
• Identify recurring themes. Link codes together into cohesive, overarching themes.

There are several specific approaches to analyzing qualitative data. Although these methods share similar processes, they emphasize different concepts.

Qualitative research often tries to preserve the voice and perspective of participants and can be adjusted as new research questions arise. Qualitative research is good for:

• Flexibility

The data collection and analysis process can be adapted as new ideas or patterns emerge. They are not rigidly decided beforehand.

• Natural settings

Data collection occurs in real-world contexts or in naturalistic ways.

• Meaningful insights

Detailed descriptions of people’s experiences, feelings and perceptions can be used in designing, testing or improving systems or products.

• Generation of new ideas

Open-ended responses mean that researchers can uncover novel problems or opportunities that they wouldn’t have thought of otherwise.

Researchers must consider practical and theoretical limitations in analyzing and interpreting their data. Qualitative research suffers from:

• Unreliability

The real-world setting often makes qualitative research unreliable because of uncontrolled factors that affect the data.

• Subjectivity

Due to the researcher’s primary role in analyzing and interpreting data, qualitative research cannot be replicated . The researcher decides what is important and what is irrelevant in data analysis, so interpretations of the same data can vary greatly.

• Limited generalizability

Small samples are often used to gather detailed data about specific contexts. Despite rigorous analysis procedures, it is difficult to draw generalizable conclusions because the data may be biased and unrepresentative of the wider population .

• Labor-intensive

Although software can be used to manage and record large amounts of text, data analysis often has to be checked or performed manually.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

• Chi square goodness of fit test
• Degrees of freedom
• Null hypothesis
• Discourse analysis
• Control groups
• Mixed methods research
• Non-probability sampling
• Quantitative research
• Inclusion and exclusion criteria

Research bias

• Rosenthal effect
• Implicit bias
• Cognitive bias
• Selection bias
• Negativity bias
• Status quo bias

Quantitative research deals with numbers and statistics, while qualitative research deals with words and meanings.

Quantitative methods allow you to systematically measure variables and test hypotheses . Qualitative methods allow you to explore concepts and experiences in more detail.

There are five common approaches to qualitative research :

• Grounded theory involves collecting data in order to develop new theories.
• Ethnography involves immersing yourself in a group or organization to understand its culture.
• Narrative research involves interpreting stories to understand how people make sense of their experiences and perceptions.
• Phenomenological research involves investigating phenomena through people’s lived experiences.
• Action research links theory and practice in several cycles to drive innovative changes.

Data collection is the systematic process by which observations or measurements are gathered in research. It is used in many different contexts by academics, governments, businesses, and other organizations.

There are various approaches to qualitative data analysis , but they all share five steps in common:

• Prepare and organize your data.
• Review and explore your data.
• Develop a data coding system.
• Assign codes to the data.
• Identify recurring themes.

The specifics of each step depend on the focus of the analysis. Some common approaches include textual analysis , thematic analysis , and discourse analysis .

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Qualitative Research : Definition

Qualitative research is the naturalistic study of social meanings and processes, using interviews, observations, and the analysis of texts and images.  In contrast to quantitative researchers, whose statistical methods enable broad generalizations about populations (for example, comparisons of the percentages of U.S. demographic groups who vote in particular ways), qualitative researchers use in-depth studies of the social world to analyze how and why groups think and act in particular ways (for instance, case studies of the experiences that shape political views).   

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• Introduction to NVivo Have you just collected your data and wondered what to do next? Come join us for an introductory session on utilizing NVivo to support your analytical process. This session will only cover features of the software and how to import your records. Please feel free to attend any of the following sessions below: April 25th, 2024 12:30 pm - 1:45 pm Green Library - SVA Conference Room 125 May 9th, 2024 12:30 pm - 1:45 pm Green Library - SVA Conference Room 125
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What is qualitative research?

"Qualitative research is a type of research that explores and provides deeper insights into real-world problems. [1]  Instead of collecting numerical data points or intervene or introduce treatments just like in quantitative research, qualitative research helps generate hypotheses as well as further investigate and understand quantitative data."

"Qualitative research at its core, ask open-ended questions whose answers are not easily put into numbers such as ‘how’ and ‘why’. [2]  Due to the open-ended nature of the research questions at hand, qualitative research design is often not linear in the same way quantitative design is. [2]  One of the strengths of qualitative research is its ability to explain processes and patterns of human behavior that can be difficult to quantify. [3]  Phenomena such as experiences, attitudes, and behaviors can be difficult to accurately capture quantitatively, whereas a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a certain time or during an event of interest."

• Qualitative Study - Steven Tenny; Grace D. Brannan; Janelle M. Brannan; Nancy C. Sharts-Hopko. This article details what qualitative research is, and some of the methodologies used.

Examples of Qualitative Research

• Quantitative vs Qualitative Chart Chart showing examples of quantitative vs. qualitative research.

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• Methodology
• What Is Qualitative Research? | Methods & Examples

What Is Qualitative Research? | Methods & Examples

Published on 4 April 2022 by Pritha Bhandari . Revised on 30 January 2023.

Qualitative research involves collecting and analysing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research.

Qualitative research is the opposite of quantitative research , which involves collecting and analysing numerical data for statistical analysis.

Qualitative research is commonly used in the humanities and social sciences, in subjects such as anthropology, sociology, education, health sciences, and history.

• How does social media shape body image in teenagers?
• How do children and adults interpret healthy eating in the UK?
• What factors influence employee retention in a large organisation?
• How is anxiety experienced around the world?
• How can teachers integrate social issues into science curriculums?

Table of contents

Approaches to qualitative research, qualitative research methods, qualitative data analysis, advantages of qualitative research, disadvantages of qualitative research, frequently asked questions about qualitative research.

Qualitative research is used to understand how people experience the world. While there are many approaches to qualitative research, they tend to be flexible and focus on retaining rich meaning when interpreting data.

Common approaches include grounded theory, ethnography, action research, phenomenological research, and narrative research. They share some similarities, but emphasise different aims and perspectives.

Prevent plagiarism, run a free check.

Each of the research approaches involve using one or more data collection methods . These are some of the most common qualitative methods:

• Observations: recording what you have seen, heard, or encountered in detailed field notes.
• Interviews:  personally asking people questions in one-on-one conversations.
• Focus groups: asking questions and generating discussion among a group of people.
• Surveys : distributing questionnaires with open-ended questions.
• Secondary research: collecting existing data in the form of texts, images, audio or video recordings, etc.
• You take field notes with observations and reflect on your own experiences of the company culture.
• You distribute open-ended surveys to employees across all the company’s offices by email to find out if the culture varies across locations.
• You conduct in-depth interviews with employees in your office to learn about their experiences and perspectives in greater detail.

Qualitative researchers often consider themselves ‘instruments’ in research because all observations, interpretations and analyses are filtered through their own personal lens.

For this reason, when writing up your methodology for qualitative research, it’s important to reflect on your approach and to thoroughly explain the choices you made in collecting and analysing the data.

Qualitative data can take the form of texts, photos, videos and audio. For example, you might be working with interview transcripts, survey responses, fieldnotes, or recordings from natural settings.

Most types of qualitative data analysis share the same five steps:

• Prepare and organise your data. This may mean transcribing interviews or typing up fieldnotes.
• Review and explore your data. Examine the data for patterns or repeated ideas that emerge.
• Develop a data coding system. Based on your initial ideas, establish a set of codes that you can apply to categorise your data.
• Assign codes to the data. For example, in qualitative survey analysis, this may mean going through each participant’s responses and tagging them with codes in a spreadsheet. As you go through your data, you can create new codes to add to your system if necessary.
• Identify recurring themes. Link codes together into cohesive, overarching themes.

There are several specific approaches to analysing qualitative data. Although these methods share similar processes, they emphasise different concepts.

Qualitative research often tries to preserve the voice and perspective of participants and can be adjusted as new research questions arise. Qualitative research is good for:

• Flexibility

The data collection and analysis process can be adapted as new ideas or patterns emerge. They are not rigidly decided beforehand.

• Natural settings

Data collection occurs in real-world contexts or in naturalistic ways.

• Meaningful insights

Detailed descriptions of people’s experiences, feelings and perceptions can be used in designing, testing or improving systems or products.

• Generation of new ideas

Open-ended responses mean that researchers can uncover novel problems or opportunities that they wouldn’t have thought of otherwise.

Researchers must consider practical and theoretical limitations in analysing and interpreting their data. Qualitative research suffers from:

• Unreliability

The real-world setting often makes qualitative research unreliable because of uncontrolled factors that affect the data.

• Subjectivity

Due to the researcher’s primary role in analysing and interpreting data, qualitative research cannot be replicated . The researcher decides what is important and what is irrelevant in data analysis, so interpretations of the same data can vary greatly.

• Limited generalisability

Small samples are often used to gather detailed data about specific contexts. Despite rigorous analysis procedures, it is difficult to draw generalisable conclusions because the data may be biased and unrepresentative of the wider population .

• Labour-intensive

Although software can be used to manage and record large amounts of text, data analysis often has to be checked or performed manually.

Quantitative research deals with numbers and statistics, while qualitative research deals with words and meanings.

Quantitative methods allow you to test a hypothesis by systematically collecting and analysing data, while qualitative methods allow you to explore ideas and experiences in depth.

There are five common approaches to qualitative research :

• Grounded theory involves collecting data in order to develop new theories.
• Ethnography involves immersing yourself in a group or organisation to understand its culture.
• Narrative research involves interpreting stories to understand how people make sense of their experiences and perceptions.
• Phenomenological research involves investigating phenomena through people’s lived experiences.
• Action research links theory and practice in several cycles to drive innovative changes.

Data collection is the systematic process by which observations or measurements are gathered in research. It is used in many different contexts by academics, governments, businesses, and other organisations.

There are various approaches to qualitative data analysis , but they all share five steps in common:

• Prepare and organise your data.
• Review and explore your data.
• Develop a data coding system.
• Assign codes to the data.
• Identify recurring themes.

The specifics of each step depend on the focus of the analysis. Some common approaches include textual analysis , thematic analysis , and discourse analysis .

Cite this Scribbr article

If you want to cite this source, you can copy and paste the citation or click the ‘Cite this Scribbr article’ button to automatically add the citation to our free Reference Generator.

Bhandari, P. (2023, January 30). What Is Qualitative Research? | Methods & Examples. Scribbr. Retrieved 3 September 2024, from https://www.scribbr.co.uk/research-methods/introduction-to-qualitative-research/

Is this article helpful?

Pritha Bhandari

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This course is part of Qualitative Research Methods in Psychology Specialization

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What you'll learn

Understand and describe the iterative, naturalistic, and contextual facets of qualitative research.

Examine and comprehend the philosophical underpinnings and interpretive frameworks informing qualitative research.

Learn to evaluate qualitative studies by their associated rigor criteria, differing from those used to evaluate quantitative studies.

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Introduction to Qualitative Research

2 videos 12 readings 11 assignments

2 videos • Total 8 minutes

• The Nature of Qualitative Research • 5 minutes • Preview module
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12 readings • Total 50 minutes

• Qualitative Research in the World • 2 minutes
• The Nature of Qualitative Research • 5 minutes
• Philosophical Underpinnings • 3 minutes
• Exploring Philosophical Foundations • 3 minutes
• Before Exploring Interpretive Frameworks • 2 minutes
• Exploring Philosophical Foundations • 6 minutes
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• Saplings in the Hurricane • 6 minutes
• The LGBTQ Closet • 6 minutes
• Living With Very High Empathy • 6 minutes

11 assignments • Total 54 minutes

• Check Your Understanding: The Nature of Qualitative Research • 5 minutes
• Check Your Understanding: An Example of Qualitative Research • 5 minutes
• Check Your Understanding: Foundations of Qualitative Research • 3 minutes
• Check Your Understanding: Philosophical Underpinnings of Qualitative Research • 3 minutes
• Check Your Understanding: Interpretive Frameworks Self-Assessment • 3 minutes
• Check Your Understanding: Interpretive Frameworks • 5 minutes
• Check Your Understanding: Reviewing Philosophical Assumptions and Interpretive Frameworks • 5 minutes
• Check Your Understanding: Saplings in the Hurricane • 5 minutes
• Check Your Understanding: The LGBTQ Closet • 5 minutes
• Check Your Understanding: Living With Very High Empathy • 5 minutes
• Module Quiz: Introduction to Qualitative Research • 10 minutes

Standards of Rigor in Qualitative Research

In the world of qualitative research, notions like validity and reliability often take on new forms. Researchers must not project one set of traditional meanings onto another, in that you cannot analyze qualitative research by quantitative standards. So what do we mean by qualitative standards of rigor? It is about making certain that the qualitative process and outcomes emulate participants’ lived experiences.

1 video 6 readings 9 assignments

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6 readings • Total 38 minutes

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• A Case Study in Trustworthiness • 6 minutes
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• Trustworthiness Perspectives and Strategies • 5 minutes
• Our Limited View of the World • 2 minutes
• Our Limited View of the World, continued • 8 minutes

9 assignments • Total 50 minutes

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• Check Your Understanding: A Case Study in Trustworthiness • 5 minutes
• Check Your Understanding: Strategies to Promote Trustworthiness • 5 minutes
• Check Your Understanding: Applying Strategies to Promote Trustworthiness • 3 minutes
• Practice One • 8 minutes
• Practice Two • 5 minutes
• Practice Three • 5 minutes
• Practice Four • 5 minutes
• Module Quiz: Standards of Rigor in Qualitative Research • 10 minutes

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Complete the final course assessment.

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Qualitative Studies

Qualitative Research Studies: Introduction

Introduction

Research design decides how research materials will be collected. One or more research methods, for example -- experiment, survey, interview, etc. -- are chosen depending on the research objectives. In some research contexts, a survey may be suitable. In other instances, interviews or case studies or observation might be more appropriate. Research design actually provides insights into “how” to conduct research using a particular research methodology. Basically, every researcher has a list of research questions that need to be assessed that can be done with research design.

So research design can be defined as a framework of research methods and techniques applied by a researcher to incorporate different elements & components of research in a systematic manner. Most significantly, research design provides insights into how to Conduct Research using a particular research methodology. 

Qualitative Methods try to gather detailed, rich data allowing for an in-depth understanding of research phenomena.  Seeks the “why” rather than the “how.”

Qualitative Data Collection

Data obtained using qualitative data collection methods can be used to find new ideas, opportunities, and problems, test their value and accuracy, formulate predictions, explore a certain field in more detail, and explain the numbers obtained using quantitative data collection techniques.

Since qualitative data collection methods usually do not involve numbers and mathematical calculations, qualitative data is often seen as more subjective, but at the same time, it allows a greater depth of understanding.

Aspers, P., Corte, U. What is Qualitative in Qualitative Research .  Qual Sociol   42 , 139–160 (2019). 

Types of Qualitative Studies

Qualitative study methods are semi-structured or unstructured, usually involve small sample sizes and lack strong scientific controls.

Qualitative Study Methods

Qualitative study methods employ many of the same methods as quantitative data collection, except that instead of structured or closed, they are semi- or unstructured and open-ended.  Some of the most common qualitative  study techniques include open-ended surveys and questionnaires, interviews, focus groups, observation, case studies, and so on.

There is generally five types of qualitative data collection:

• Ethnography research: Involves semi-structure or unstructured interviews with open-ended questions; participant and non-participant observation; collected materials including documents, books, papers, audio, images, videos etc.
• Phenomenological research : I n-depth interviewing which involves conducting intensive individual interviews with a small number of respondents to explore their perspectives on a particular idea, program, or situation.  The participant interviews may be structured, semi-structured or unstructured; it also includes reflective journals; written oral self-reports; and participant’s aesthetic expressions.
• Grounded theory research: Data collection methods often include in-depth interviews using open-ended questions. Questions can be adjusted as theory emerges. Participant observation and focus groups may also be used as well as collecting and studying …  including documents, books, papers, audio, images, artifacts; videos etc. used by participants in their daily lives.
• Narrative: Participant or non-participant interview, aesthetic expressions; one’s own and other’s observation; storytelling; letter writing; autobiographic writing; collected materials …..; personal information such as values. Narrative analysis focuses on different elements to make diverse but equally substantial and meaningful interpretations and conclusions. It is a genre of analytical frames used by researchers to interpret information with the context of research shared by all in daily life. 
• Case study : Focus groups; semi-structured or unstructured interviews with open-ended questions; participant and non-participant observation; collected materials

Nayar, S., & Stanley, D. M. (Eds.). (2015).  Qualitative research methodologies for occupational science and therapy . London: Routledge.

Frank, G., & Polkinghorne, D. (2010). Qualitative Research in Occupational Therapy: From the First to the Second Generation . OTJR (Thorofare, N.J.), 30(2), 51-57.

How To Search for Qualitative Studies

Databases categorize their records using subject terms or controlled vocabularies. These Subject Headings vary for each database.

Medline/PubMed : MeSH Subject Headings

• Qualitative Research : Any type of research that employs nonnumeric information to explore individual or group characteristics, producing findings not arrived at by statistical procedures or other quantitative means.  Includes Document Analysis & Hermaneutics.
• Interviews as Topic:  Works about conversations with an individual or individuals held in order to obtain information about their background and other personal biographical data, their attitudes and opinions, etc. It includes works about school admission or job interviews.
• Focus Groups : A method of data collection and a QUALITATIVE RESEARCH tool in which a small group of individuals are brought together and allowed to interact in a discussion of their opinions about topics, issues, or questions.
• Grounded Theory : The generation of theories from analysis of empirical data.
• Nursing Methodology Research :  Research carried out by nurses concerning techniques and methods to implement projects and to document information, including methods of interviewing patients, collecting data, and forming inferences. The concept includes exploration of methodological issues such as human subjectivity and human experience.
• Anecdotes As Topic : Works about brief accounts or narratives of an incident or event.
• Narration : The act, process, or an instance of narrating, i.e., telling a story. In the context of MEDICINE or ETHICS, narration includes relating the particular and the personal in the life story of an individual.
• Personal Narratives As Topic:  Works about accounts of individual experience in relation to a particular field or of participation in related activities.
• Observational Studies As Topic : Works about clinical studies in which participants may receive diagnostic, therapeutic, or other types of interventions, but the investigator does not assign participants to specific interventions (as in an interventional study).

CINAHL (Cumulative Index to Nursing & Allied Health) : CINAHL Subject Headings 

• Action Research: Research in which problem definition, data collection, factor formulation, planned change, data analysis, and problem redefinition continue in an ongoing cycle.
• Ethnographic Research: Research which seeks to uncover the symbols and categories that members of a given culture use to interpret their world.
• Ethnological Research: Comparison and contrasting of cultures and societies as a whole.
• Ethnonursing Research: The study and analysis of a designated culture's viewpoints, beliefs, and practices about nursing care behavior.
• Grounded Theory: A qualitative method developed by Glaser and Strauss to unite theory construction and data analysis.
• Naturalist Inquiry: The use of the natural setting in research to enable understanding the whole rather than only part of the reality being studied.
• Phenomenological Research: Research designed to discover and understand the meaning of human life experiences.
• Focus Groups : Small groups of individuals brought together to discuss their opinions regarding specific issues, topics, and questions.
• Interviews:  Face-to-face or telephone meetings with subjects for the purpose of gathering information.
• Narratives : Descriptions or interpretations of events, usually in an informal manner. Often used as a data collection method for research. Do not confuse with STORYTELLING, a form of literature or telling a real or imagined story to an audience or listener.
• Descriptive Research : Research studies that have as their main objective the accurate portrayal of the characteristics of persons, situations, or groups, and the frequency with which certain phenomena occur.
• Observational Methods:  Methods of data collection in which the investigator witnesses and records behaviors of interest.
• Projective Techniques : A variety of methods for measuring by providing respondents with unstructured stimuli to which to respond.

In CINHAL, on the Advanced Search page, there are Search Options.  Scroll down to the Clinical Queries drop down box and choose to limit the search to  Qualitative-High Sensitivity; Qualitative-High Specificity ; Qualitative-Best Balance . High Sensitivity is the broadest search, to include ALL relevant material, but may also include less relevant materials. High Specificity is the most targeted search to include only the most relevant result set, but may miss some relevant materials. Best Balance retrieves the best balance between Sensitivity and Specificity.

PsycINFO: Subject Headings

• Grounded Theory
• Narrative Analysis
• Thematic Analysis : A qualitative research strategy for identifying, analyzing, and reporting identifiable patterns or clusters within data.
• Focus Grou p
• Focus Group Interview
• Semi-Structured Interview
• Interpretive Phenomenological Analysis : A systematic qualitative approach in which a researcher explores how individual's make sense of particular experiences, events, and states, primarily through the analysis of data from structured and semi-structured interviews.
• Qualitative Measures : Measures or tests employing qualitative methods and/or data, such as narratives, interviews, and focus groups.

As with CINAHL, you can limit to Methodology.  Click on Additional Limits, scroll down to "Methodology" and choose "Qualitative Study", "Focus Groups" or "Interview".

NOTE!: Be aware of  Inconsistent indexing. The above subject headings as not always indexed (i.e. added to articles) for qualitative research nor is the publication type/methodology.  So, to successfully find qualitative articles you also need to add keywords to your search strategy or if you are getting too few results, leave off the Clinical Queries or Methodology filters.

Free text keywords

Use selective free text keywords to search in Titles, Abstracts or Keywords of records held in the databases to identify Qualitative Research.  Examples:

When searching, do a combination of subject terms and keywords depending on the type of qualitative study you are looking for:

Qualitative Research [MeSH] OR (qualitative AND (research OR study OR method))

(Grounded Theory[MeSH] OR "grounded theory")

then combine it with your topic of interest

post-traumatic stress disorder OR PTSD

brain injury, OR BTI OR "traumatic, brain injury"

How to Critically Analyze Qualitative Studies

 A critical analysis of a qualitative study considers the “fit” of the research question with the qualitative method used in the study. There are many checklists available for the assessment of qualitative research studies.  Here are a few:

• The Johanna Briggs Institute: The Joanna Briggs Institute Critical Appraisal tools  for use in JBI Systematic Reviews Checklist for  Qualitative Research  
• CASP:  CASP Checklist: 10 questions to help you make sense of a Qualitative research
• McMaster University:  Guidelines for Critical Review Form:  Qualitative Studies (Version 2.0) © Letts, L., Wilkins, S., Law, M., Stewart, D., Bosch, J., & Westmorland, M., 2007  

NOTE:  When using these checklists, be sure to use them critically and with careful consideration of the research context.  In other words, use the checklists as the beginning point in assessing the article and then re-assess the article based on whether the findings can be applied in your setting/population/disease/condition.

Additional Resources

Moorley, C., & Cathala, X. (2019). How to appraise qualitative research .  Evidence-Based Nursing ,  22 (1), 10-13.    ( open access)

Stenfors, T., Kajamaa, A. and Bennett, D. (2020), How to … assess the quality of qualitative research . Clin Teach, 17: 596-599.

Greenhalgh, T., & Taylor, R. (1997). How to read a paper: Papers that go beyond numbers (qualitative research).   BMj ,  315 (7110), 740-743. 

Jeanfreau, S. G., & Jack, L., Jr (2010). Appraising qualitative research in health education: guidelines for public health educators.   Health promotion practice ,  11 (5), 612–617. 

Research Series - Critical appraisal of qualitative research when reading papers Jul 22, 2022 Virtual Tutor; Research Series (Elsevier Health Education) YouTube Video 10:04 min [ This episode Professor Dall'Ora will be looking at qualitative research in more detail. In particular how to critically appraise qualitative studies.]

Hanes K. Chapter 4: Critical appraisal of qualitative research. In: Noyes J, Booth A, Hannes K, Harden A, Harris J, Lewin S, Lockwood C (editors), Supplementary Guidance for Inclusion of Qualitative Research in Cochrane Systematic Reviews of Interventions. Version 1 (updated August 2011). Cochrane Collaboration Qualitative Methods Group, 2011. 

David Tod, Andrew Booth & Brett Smith (2022)  Critical appraisal ,  International Review of Sport and Exercise Psychology, 15:1, 52-72  (open access)

Validity & Reliability in Qualitative Studies

Validity & Reliability

Validity in qualitative research means the “appropriateness” of the tools, processes, and data -- are the tools, processes and data measuring what it is intended to measure to answer the research question?  Assessing for validity is looking to see if the research question is "valid" for the desired outcome -- whether the choice of of the methodology used was appropriate for answering the research question, was the study design valid for the methodology, were the appropriate sampling and data analysis used and finally, were the results and conclusions valid for the sample and within the context of the research question. 

In contrast, reliability concerns the degree of consistency in the results if the study, using the same methodology, can be repeated over and over.

The Basics of Validity and Reliability in Research by Joe O'Brian & Anders Orn, Research Collective.com

Brewer, M., & Crano, W. (2014). Research Design and Issues of Validity. In H. Reis & C. Judd (Eds.),  Handbook of Research Methods in Social and Personality Psychology  (pp. 11-26). Cambridge: Cambridge University Press. 

Golafshani, N. (2003). Understanding Reliability and Validity in Qualitative Research.   The Qualitative Report ,  8 (4), 597-606. 

Cypress, Brigitte S. EdD, RN, CCRN. Rigor or Reliability and Validity in Qualitative Research: Perspectives, Strategies, Reconceptualization, and Recommendations . Dimensions of Critical Care Nursing 36(4):p 253-263, 7/8 2017. 

Leung L. (2015). Validity, reliability, and generalizability in qualitative research .  Journal of family medicine and primary care ,  4 (3), 324–327. 

Understanding Reliability and Validity . Writing@CSU

Rosumeck, S., Wagner, M., Wallraf, S., & Euler, U. (2020). A validation study revealed differences in design and performance of search filters for qualitative research in PsycINFO and CINAHL.   Journal of clinical epidemiology ,  128 , 101–108. 

Wagner, M., Rosumeck, S., Küffmeier, C., Döring, K., & Euler, U. (2020). A validation study revealed differences in design and performance of MEDLINE search filters for qualitative research .  Journal of clinical epidemiology ,  120 , 17–24.

Franzel, B., Schwiegershausen, M., Heusser, P.  et al.   How to locate and appraise qualitative research in complementary and alternative medicine.   BMC Complement Altern Med   13 , 125 (2013). 

Finfgeld-Connett, D. and Johnson, E.D. (2013), Literature search strategies for conducting knowledge-building and theory-generating qualitative systematic reviews. Journal of Advanced Nursing, 69: 194-204. 

Rogers, M, Bethel, A, Abbott, R.  Locating qualitative studies in dementia on MEDLINE, EMBASE, CINAHL, and PsycINFO: A comparison of search strategies.   Res Syn Meth . 2018; 9: 579– 586. 

Booth, A. Searching for qualitative research for inclusion in systematic reviews: a structured methodological review .  Syst Rev   5 , 74 (2016). 

Noyes, J., Hannes, K., Booth, A., Harris, J., Harden, A., Popay, J., ... & Pantoja, T. (2015). Qualitative research and Cochrane reviews .

Citing Sources

Citations are brief notations in the body of a research paper that point to a source in the bibliography or references cited section.

If your paper quotes, paraphrases, summarizes the work of someone else, you need to use citations.

Citation style guides such as APA, Chicago and MLA provide detailed instructions on how citations and bibliographies should be formatted.

Health Sciences Research Toolkit

Resources, tips, and guidelines to help you through the research process., finding information.

Library Research Checklist Helpful hints for starting a library research project.

Search Strategy Checklist and Tips Helpful tips on how to develop a literature search strategy.

Boolean Operators: A Cheat Sheet Boolean logic (named after mathematician George Boole) is a system of logic to designed to yield optimal search results. The Boolean operators, AND, OR, and NOT, help you construct a logical search. Boolean operators act on sets -- groups of records containing a particular word or concept.

Literature Searching Overview and tips on how to conduct a literature search.

Health Statistics and Data Sources Health related statistics and data sources are increasingly available on the Internet. They can be found already neatly packaged, or as raw data sets. The most reliable data comes from governmental sources or health-care professional organizations.

Evaluating Information

Primary, Secondary and Tertiary Sources in the Health Sciences Understand what are considered primary, secondary and tertiary sources.

Scholarly vs Popular Journals/Magazines How to determine what are scholarly journals vs trade or popular magazines.

Identifying Peer-Reviewed Journals A “peer-reviewed” or “refereed” journal is one in which the articles it contains have been examined by people with credentials in the article’s field of study before it is published.

Evaluating Web  Resources When searching for information on the Internet, it is important to be aware of the quality of the information being presented to you. Keep in mind that anyone can host a web site. To be sure that the information you are looking at is credible and of value.

Conducting Research Through An Anti-Racism Lens This guide is for students, staff, and faculty who are incorporating an anti-racist lens at all stages of the research life cycle.

Understanding Research Study Designs Covers case studies, randomized control trials, systematic reviews and meta-analysis.

Qualitative Studies Overview of what is a qualitative study and how to recognize, find and critically appraise.

Writing and Publishing

Citing Sources Citations are brief notations in the body of a research paper that point to a source in the bibliography or references cited section.

Structure of a Research Paper Reports of research studies usually follow the IMRAD format. IMRAD (Introduction, Methods, Results, [and] Discussion) is a mnemonic for the major components of a scientific paper. These elements are included in the overall structure of a research paper.

Top Reasons for Non-Acceptance of Scientific Articles Avoid these mistakes when preparing an article for publication.

Annotated Bibliographies Guide on how to create an annotated bibliography.

Writing guides, Style Manuals and the Publication Process in the Biological and Health Sciences Style manuals, citation guides as well as information on public access policies, copyright and plagiarism.

Chapter 1. Introduction

“Science is in danger, and for that reason it is becoming dangerous” -Pierre Bourdieu, Science of Science and Reflexivity

Why an Open Access Textbook on Qualitative Research Methods?

I have been teaching qualitative research methods to both undergraduates and graduate students for many years.  Although there are some excellent textbooks out there, they are often costly, and none of them, to my mind, properly introduces qualitative research methods to the beginning student (whether undergraduate or graduate student).  In contrast, this open-access textbook is designed as a (free) true introduction to the subject, with helpful, practical pointers on how to conduct research and how to access more advanced instruction.  

Textbooks are typically arranged in one of two ways: (1) by technique (each chapter covers one method used in qualitative research); or (2) by process (chapters advance from research design through publication).  But both of these approaches are necessary for the beginner student.  This textbook will have sections dedicated to the process as well as the techniques of qualitative research.  This is a true “comprehensive” book for the beginning student.  In addition to covering techniques of data collection and data analysis, it provides a road map of how to get started and how to keep going and where to go for advanced instruction.  It covers aspects of research design and research communication as well as methods employed.  Along the way, it includes examples from many different disciplines in the social sciences.

The primary goal has been to create a useful, accessible, engaging textbook for use across many disciplines.  And, let’s face it.  Textbooks can be boring.  I hope readers find this to be a little different.  I have tried to write in a practical and forthright manner, with many lively examples and references to good and intellectually creative qualitative research.  Woven throughout the text are short textual asides (in colored textboxes) by professional (academic) qualitative researchers in various disciplines.  These short accounts by practitioners should help inspire students.  So, let’s begin!

What is Research?

When we use the word research , what exactly do we mean by that?  This is one of those words that everyone thinks they understand, but it is worth beginning this textbook with a short explanation.  We use the term to refer to “empirical research,” which is actually a historically specific approach to understanding the world around us.  Think about how you know things about the world. [1] You might know your mother loves you because she’s told you she does.  Or because that is what “mothers” do by tradition.  Or you might know because you’ve looked for evidence that she does, like taking care of you when you are sick or reading to you in bed or working two jobs so you can have the things you need to do OK in life.  Maybe it seems churlish to look for evidence; you just take it “on faith” that you are loved.

Only one of the above comes close to what we mean by research.  Empirical research is research (investigation) based on evidence.  Conclusions can then be drawn from observable data.  This observable data can also be “tested” or checked.  If the data cannot be tested, that is a good indication that we are not doing research.  Note that we can never “prove” conclusively, through observable data, that our mothers love us.  We might have some “disconfirming evidence” (that time she didn’t show up to your graduation, for example) that could push you to question an original hypothesis , but no amount of “confirming evidence” will ever allow us to say with 100% certainty, “my mother loves me.”  Faith and tradition and authority work differently.  Our knowledge can be 100% certain using each of those alternative methods of knowledge, but our certainty in those cases will not be based on facts or evidence.

For many periods of history, those in power have been nervous about “science” because it uses evidence and facts as the primary source of understanding the world, and facts can be at odds with what power or authority or tradition want you to believe.  That is why I say that scientific empirical research is a historically specific approach to understand the world.  You are in college or university now partly to learn how to engage in this historically specific approach.

In the sixteenth and seventeenth centuries in Europe, there was a newfound respect for empirical research, some of which was seriously challenging to the established church.  Using observations and testing them, scientists found that the earth was not at the center of the universe, for example, but rather that it was but one planet of many which circled the sun. [2]   For the next two centuries, the science of astronomy, physics, biology, and chemistry emerged and became disciplines taught in universities.  All used the scientific method of observation and testing to advance knowledge.  Knowledge about people , however, and social institutions, however, was still left to faith, tradition, and authority.  Historians and philosophers and poets wrote about the human condition, but none of them used research to do so. [3]

It was not until the nineteenth century that “social science” really emerged, using the scientific method (empirical observation) to understand people and social institutions.  New fields of sociology, economics, political science, and anthropology emerged.  The first sociologists, people like Auguste Comte and Karl Marx, sought specifically to apply the scientific method of research to understand society, Engels famously claiming that Marx had done for the social world what Darwin did for the natural world, tracings its laws of development.  Today we tend to take for granted the naturalness of science here, but it is actually a pretty recent and radical development.

To return to the question, “does your mother love you?”  Well, this is actually not really how a researcher would frame the question, as it is too specific to your case.  It doesn’t tell us much about the world at large, even if it does tell us something about you and your relationship with your mother.  A social science researcher might ask, “do mothers love their children?”  Or maybe they would be more interested in how this loving relationship might change over time (e.g., “do mothers love their children more now than they did in the 18th century when so many children died before reaching adulthood?”) or perhaps they might be interested in measuring quality of love across cultures or time periods, or even establishing “what love looks like” using the mother/child relationship as a site of exploration.  All of these make good research questions because we can use observable data to answer them.

What is Qualitative Research?

“All we know is how to learn. How to study, how to listen, how to talk, how to tell.  If we don’t tell the world, we don’t know the world.  We’re lost in it, we die.” -Ursula LeGuin, The Telling

At its simplest, qualitative research is research about the social world that does not use numbers in its analyses.  All those who fear statistics can breathe a sigh of relief – there are no mathematical formulae or regression models in this book! But this definition is less about what qualitative research can be and more about what it is not.  To be honest, any simple statement will fail to capture the power and depth of qualitative research.  One way of contrasting qualitative research to quantitative research is to note that the focus of qualitative research is less about explaining and predicting relationships between variables and more about understanding the social world.  To use our mother love example, the question about “what love looks like” is a good question for the qualitative researcher while all questions measuring love or comparing incidences of love (both of which require measurement) are good questions for quantitative researchers. Patton writes,

Qualitative data describe.  They take us, as readers, into the time and place of the observation so that we know what it was like to have been there.  They capture and communicate someone else’s experience of the world in his or her own words.  Qualitative data tell a story. ( Patton 2002:47 )

Qualitative researchers are asking different questions about the world than their quantitative colleagues.  Even when researchers are employed in “mixed methods” research ( both quantitative and qualitative), they are using different methods to address different questions of the study.  I do a lot of research about first-generation and working-college college students.  Where a quantitative researcher might ask, how many first-generation college students graduate from college within four years? Or does first-generation college status predict high student debt loads?  A qualitative researcher might ask, how does the college experience differ for first-generation college students?  What is it like to carry a lot of debt, and how does this impact the ability to complete college on time?  Both sets of questions are important, but they can only be answered using specific tools tailored to those questions.  For the former, you need large numbers to make adequate comparisons.  For the latter, you need to talk to people, find out what they are thinking and feeling, and try to inhabit their shoes for a little while so you can make sense of their experiences and beliefs.

Examples of Qualitative Research

You have probably seen examples of qualitative research before, but you might not have paid particular attention to how they were produced or realized that the accounts you were reading were the result of hours, months, even years of research “in the field.”  A good qualitative researcher will present the product of their hours of work in such a way that it seems natural, even obvious, to the reader.  Because we are trying to convey what it is like answers, qualitative research is often presented as stories – stories about how people live their lives, go to work, raise their children, interact with one another.  In some ways, this can seem like reading particularly insightful novels.  But, unlike novels, there are very specific rules and guidelines that qualitative researchers follow to ensure that the “story” they are telling is accurate , a truthful rendition of what life is like for the people being studied.  Most of this textbook will be spent conveying those rules and guidelines.  Let’s take a look, first, however, at three examples of what the end product looks like.  I have chosen these three examples to showcase very different approaches to qualitative research, and I will return to these five examples throughout the book.  They were all published as whole books (not chapters or articles), and they are worth the long read, if you have the time.  I will also provide some information on how these books came to be and the length of time it takes to get them into book version.  It is important you know about this process, and the rest of this textbook will help explain why it takes so long to conduct good qualitative research!

Example 1 : The End Game (ethnography + interviews)

Corey Abramson is a sociologist who teaches at the University of Arizona.   In 2015 he published The End Game: How Inequality Shapes our Final Years ( 2015 ). This book was based on the research he did for his dissertation at the University of California-Berkeley in 2012.  Actually, the dissertation was completed in 2012 but the work that was produced that took several years.  The dissertation was entitled, “This is How We Live, This is How We Die: Social Stratification, Aging, and Health in Urban America” ( 2012 ).  You can see how the book version, which was written for a more general audience, has a more engaging sound to it, but that the dissertation version, which is what academic faculty read and evaluate, has a more descriptive title.  You can read the title and know that this is a study about aging and health and that the focus is going to be inequality and that the context (place) is going to be “urban America.”  It’s a study about “how” people do something – in this case, how they deal with aging and death.  This is the very first sentence of the dissertation, “From our first breath in the hospital to the day we die, we live in a society characterized by unequal opportunities for maintaining health and taking care of ourselves when ill.  These disparities reflect persistent racial, socio-economic, and gender-based inequalities and contribute to their persistence over time” ( 1 ).  What follows is a truthful account of how that is so.

Cory Abramson spent three years conducting his research in four different urban neighborhoods.  We call the type of research he conducted “comparative ethnographic” because he designed his study to compare groups of seniors as they went about their everyday business.  It’s comparative because he is comparing different groups (based on race, class, gender) and ethnographic because he is studying the culture/way of life of a group. [4]   He had an educated guess, rooted in what previous research had shown and what social theory would suggest, that people’s experiences of aging differ by race, class, and gender.  So, he set up a research design that would allow him to observe differences.  He chose two primarily middle-class (one was racially diverse and the other was predominantly White) and two primarily poor neighborhoods (one was racially diverse and the other was predominantly African American).  He hung out in senior centers and other places seniors congregated, watched them as they took the bus to get prescriptions filled, sat in doctor’s offices with them, and listened to their conversations with each other.  He also conducted more formal conversations, what we call in-depth interviews, with sixty seniors from each of the four neighborhoods.  As with a lot of fieldwork , as he got closer to the people involved, he both expanded and deepened his reach –

By the end of the project, I expanded my pool of general observations to include various settings frequented by seniors: apartment building common rooms, doctors’ offices, emergency rooms, pharmacies, senior centers, bars, parks, corner stores, shopping centers, pool halls, hair salons, coffee shops, and discount stores. Over the course of the three years of fieldwork, I observed hundreds of elders, and developed close relationships with a number of them. ( 2012:10 )

When Abramson rewrote the dissertation for a general audience and published his book in 2015, it got a lot of attention.  It is a beautifully written book and it provided insight into a common human experience that we surprisingly know very little about.  It won the Outstanding Publication Award by the American Sociological Association Section on Aging and the Life Course and was featured in the New York Times .  The book was about aging, and specifically how inequality shapes the aging process, but it was also about much more than that.  It helped show how inequality affects people’s everyday lives.  For example, by observing the difficulties the poor had in setting up appointments and getting to them using public transportation and then being made to wait to see a doctor, sometimes in standing-room-only situations, when they are unwell, and then being treated dismissively by hospital staff, Abramson allowed readers to feel the material reality of being poor in the US.  Comparing these examples with seniors with adequate supplemental insurance who have the resources to hire car services or have others assist them in arranging care when they need it, jolts the reader to understand and appreciate the difference money makes in the lives and circumstances of us all, and in a way that is different than simply reading a statistic (“80% of the poor do not keep regular doctor’s appointments”) does.  Qualitative research can reach into spaces and places that often go unexamined and then reports back to the rest of us what it is like in those spaces and places.

Example 2: Racing for Innocence (Interviews + Content Analysis + Fictional Stories)

Jennifer Pierce is a Professor of American Studies at the University of Minnesota.  Trained as a sociologist, she has written a number of books about gender, race, and power.  Her very first book, Gender Trials: Emotional Lives in Contemporary Law Firms, published in 1995, is a brilliant look at gender dynamics within two law firms.  Pierce was a participant observer, working as a paralegal, and she observed how female lawyers and female paralegals struggled to obtain parity with their male colleagues.

Fifteen years later, she reexamined the context of the law firm to include an examination of racial dynamics, particularly how elite white men working in these spaces created and maintained a culture that made it difficult for both female attorneys and attorneys of color to thrive. Her book, Racing for Innocence: Whiteness, Gender, and the Backlash Against Affirmative Action , published in 2012, is an interesting and creative blending of interviews with attorneys, content analyses of popular films during this period, and fictional accounts of racial discrimination and sexual harassment.  The law firm she chose to study had come under an affirmative action order and was in the process of implementing equitable policies and programs.  She wanted to understand how recipients of white privilege (the elite white male attorneys) come to deny the role they play in reproducing inequality.  Through interviews with attorneys who were present both before and during the affirmative action order, she creates a historical record of the “bad behavior” that necessitated new policies and procedures, but also, and more importantly , probed the participants ’ understanding of this behavior.  It should come as no surprise that most (but not all) of the white male attorneys saw little need for change, and that almost everyone else had accounts that were different if not sometimes downright harrowing.

I’ve used Pierce’s book in my qualitative research methods courses as an example of an interesting blend of techniques and presentation styles.  My students often have a very difficult time with the fictional accounts she includes.  But they serve an important communicative purpose here.  They are her attempts at presenting “both sides” to an objective reality – something happens (Pierce writes this something so it is very clear what it is), and the two participants to the thing that happened have very different understandings of what this means.  By including these stories, Pierce presents one of her key findings – people remember things differently and these different memories tend to support their own ideological positions.  I wonder what Pierce would have written had she studied the murder of George Floyd or the storming of the US Capitol on January 6 or any number of other historic events whose observers and participants record very different happenings.

This is not to say that qualitative researchers write fictional accounts.  In fact, the use of fiction in our work remains controversial.  When used, it must be clearly identified as a presentation device, as Pierce did.  I include Racing for Innocence here as an example of the multiple uses of methods and techniques and the way that these work together to produce better understandings by us, the readers, of what Pierce studied.  We readers come away with a better grasp of how and why advantaged people understate their own involvement in situations and structures that advantage them.  This is normal human behavior , in other words.  This case may have been about elite white men in law firms, but the general insights here can be transposed to other settings.  Indeed, Pierce argues that more research needs to be done about the role elites play in the reproduction of inequality in the workplace in general.

Example 3: Amplified Advantage (Mixed Methods: Survey Interviews + Focus Groups + Archives)

The final example comes from my own work with college students, particularly the ways in which class background affects the experience of college and outcomes for graduates.  I include it here as an example of mixed methods, and for the use of supplementary archival research.  I’ve done a lot of research over the years on first-generation, low-income, and working-class college students.  I am curious (and skeptical) about the possibility of social mobility today, particularly with the rising cost of college and growing inequality in general.  As one of the few people in my family to go to college, I didn’t grow up with a lot of examples of what college was like or how to make the most of it.  And when I entered graduate school, I realized with dismay that there were very few people like me there.  I worried about becoming too different from my family and friends back home.  And I wasn’t at all sure that I would ever be able to pay back the huge load of debt I was taking on.  And so I wrote my dissertation and first two books about working-class college students.  These books focused on experiences in college and the difficulties of navigating between family and school ( Hurst 2010a, 2012 ).  But even after all that research, I kept coming back to wondering if working-class students who made it through college had an equal chance at finding good jobs and happy lives,

What happens to students after college?  Do working-class students fare as well as their peers?  I knew from my own experience that barriers continued through graduate school and beyond, and that my debtload was higher than that of my peers, constraining some of the choices I made when I graduated.  To answer these questions, I designed a study of students attending small liberal arts colleges, the type of college that tried to equalize the experience of students by requiring all students to live on campus and offering small classes with lots of interaction with faculty.  These private colleges tend to have more money and resources so they can provide financial aid to low-income students.  They also attract some very wealthy students.  Because they enroll students across the class spectrum, I would be able to draw comparisons.  I ended up spending about four years collecting data, both a survey of more than 2000 students (which formed the basis for quantitative analyses) and qualitative data collection (interviews, focus groups, archival research, and participant observation).  This is what we call a “mixed methods” approach because we use both quantitative and qualitative data.  The survey gave me a large enough number of students that I could make comparisons of the how many kind, and to be able to say with some authority that there were in fact significant differences in experience and outcome by class (e.g., wealthier students earned more money and had little debt; working-class students often found jobs that were not in their chosen careers and were very affected by debt, upper-middle-class students were more likely to go to graduate school).  But the survey analyses could not explain why these differences existed.  For that, I needed to talk to people and ask them about their motivations and aspirations.  I needed to understand their perceptions of the world, and it is very hard to do this through a survey.

By interviewing students and recent graduates, I was able to discern particular patterns and pathways through college and beyond.  Specifically, I identified three versions of gameplay.  Upper-middle-class students, whose parents were themselves professionals (academics, lawyers, managers of non-profits), saw college as the first stage of their education and took classes and declared majors that would prepare them for graduate school.  They also spent a lot of time building their resumes, taking advantage of opportunities to help professors with their research, or study abroad.  This helped them gain admission to highly-ranked graduate schools and interesting jobs in the public sector.  In contrast, upper-class students, whose parents were wealthy and more likely to be engaged in business (as CEOs or other high-level directors), prioritized building social capital.  They did this by joining fraternities and sororities and playing club sports.  This helped them when they graduated as they called on friends and parents of friends to find them well-paying jobs.  Finally, low-income, first-generation, and working-class students were often adrift.  They took the classes that were recommended to them but without the knowledge of how to connect them to life beyond college.  They spent time working and studying rather than partying or building their resumes.  All three sets of students thought they were “doing college” the right way, the way that one was supposed to do college.   But these three versions of gameplay led to distinct outcomes that advantaged some students over others.  I titled my work “Amplified Advantage” to highlight this process.

These three examples, Cory Abramson’s The End Game , Jennifer Peirce’s Racing for Innocence, and my own Amplified Advantage, demonstrate the range of approaches and tools available to the qualitative researcher.  They also help explain why qualitative research is so important.  Numbers can tell us some things about the world, but they cannot get at the hearts and minds, motivations and beliefs of the people who make up the social worlds we inhabit.  For that, we need tools that allow us to listen and make sense of what people tell us and show us.  That is what good qualitative research offers us.

How Is This Book Organized?

This textbook is organized as a comprehensive introduction to the use of qualitative research methods.  The first half covers general topics (e.g., approaches to qualitative research, ethics) and research design (necessary steps for building a successful qualitative research study).  The second half reviews various data collection and data analysis techniques.  Of course, building a successful qualitative research study requires some knowledge of data collection and data analysis so the chapters in the first half and the chapters in the second half should be read in conversation with each other.  That said, each chapter can be read on its own for assistance with a particular narrow topic.  In addition to the chapters, a helpful glossary can be found in the back of the book.  Rummage around in the text as needed.

Chapter Descriptions

Chapter 2 provides an overview of the Research Design Process.  How does one begin a study? What is an appropriate research question?  How is the study to be done – with what methods ?  Involving what people and sites?  Although qualitative research studies can and often do change and develop over the course of data collection, it is important to have a good idea of what the aims and goals of your study are at the outset and a good plan of how to achieve those aims and goals.  Chapter 2 provides a road map of the process.

Chapter 3 describes and explains various ways of knowing the (social) world.  What is it possible for us to know about how other people think or why they behave the way they do?  What does it mean to say something is a “fact” or that it is “well-known” and understood?  Qualitative researchers are particularly interested in these questions because of the types of research questions we are interested in answering (the how questions rather than the how many questions of quantitative research).  Qualitative researchers have adopted various epistemological approaches.  Chapter 3 will explore these approaches, highlighting interpretivist approaches that acknowledge the subjective aspect of reality – in other words, reality and knowledge are not objective but rather influenced by (interpreted through) people.

Chapter 4 focuses on the practical matter of developing a research question and finding the right approach to data collection.  In any given study (think of Cory Abramson’s study of aging, for example), there may be years of collected data, thousands of observations , hundreds of pages of notes to read and review and make sense of.  If all you had was a general interest area (“aging”), it would be very difficult, nearly impossible, to make sense of all of that data.  The research question provides a helpful lens to refine and clarify (and simplify) everything you find and collect.  For that reason, it is important to pull out that lens (articulate the research question) before you get started.  In the case of the aging study, Cory Abramson was interested in how inequalities affected understandings and responses to aging.  It is for this reason he designed a study that would allow him to compare different groups of seniors (some middle-class, some poor).  Inevitably, he saw much more in the three years in the field than what made it into his book (or dissertation), but he was able to narrow down the complexity of the social world to provide us with this rich account linked to the original research question.  Developing a good research question is thus crucial to effective design and a successful outcome.  Chapter 4 will provide pointers on how to do this.  Chapter 4 also provides an overview of general approaches taken to doing qualitative research and various “traditions of inquiry.”

Chapter 5 explores sampling .  After you have developed a research question and have a general idea of how you will collect data (Observations?  Interviews?), how do you go about actually finding people and sites to study?  Although there is no “correct number” of people to interview , the sample should follow the research question and research design.  Unlike quantitative research, qualitative research involves nonprobability sampling.  Chapter 5 explains why this is so and what qualities instead make a good sample for qualitative research.

Chapter 6 addresses the importance of reflexivity in qualitative research.  Related to epistemological issues of how we know anything about the social world, qualitative researchers understand that we the researchers can never be truly neutral or outside the study we are conducting.  As observers, we see things that make sense to us and may entirely miss what is either too obvious to note or too different to comprehend.  As interviewers, as much as we would like to ask questions neutrally and remain in the background, interviews are a form of conversation, and the persons we interview are responding to us .  Therefore, it is important to reflect upon our social positions and the knowledges and expectations we bring to our work and to work through any blind spots that we may have.  Chapter 6 provides some examples of reflexivity in practice and exercises for thinking through one’s own biases.

Chapter 7 is a very important chapter and should not be overlooked.  As a practical matter, it should also be read closely with chapters 6 and 8.  Because qualitative researchers deal with people and the social world, it is imperative they develop and adhere to a strong ethical code for conducting research in a way that does not harm.  There are legal requirements and guidelines for doing so (see chapter 8), but these requirements should not be considered synonymous with the ethical code required of us.   Each researcher must constantly interrogate every aspect of their research, from research question to design to sample through analysis and presentation, to ensure that a minimum of harm (ideally, zero harm) is caused.  Because each research project is unique, the standards of care for each study are unique.  Part of being a professional researcher is carrying this code in one’s heart, being constantly attentive to what is required under particular circumstances.  Chapter 7 provides various research scenarios and asks readers to weigh in on the suitability and appropriateness of the research.  If done in a class setting, it will become obvious fairly quickly that there are often no absolutely correct answers, as different people find different aspects of the scenarios of greatest importance.  Minimizing the harm in one area may require possible harm in another.  Being attentive to all the ethical aspects of one’s research and making the best judgments one can, clearly and consciously, is an integral part of being a good researcher.

Chapter 8 , best to be read in conjunction with chapter 7, explains the role and importance of Institutional Review Boards (IRBs) .  Under federal guidelines, an IRB is an appropriately constituted group that has been formally designated to review and monitor research involving human subjects .  Every institution that receives funding from the federal government has an IRB.  IRBs have the authority to approve, require modifications to (to secure approval), or disapprove research.  This group review serves an important role in the protection of the rights and welfare of human research subjects.  Chapter 8 reviews the history of IRBs and the work they do but also argues that IRBs’ review of qualitative research is often both over-inclusive and under-inclusive.  Some aspects of qualitative research are not well understood by IRBs, given that they were developed to prevent abuses in biomedical research.  Thus, it is important not to rely on IRBs to identify all the potential ethical issues that emerge in our research (see chapter 7).

Chapter 9 provides help for getting started on formulating a research question based on gaps in the pre-existing literature.  Research is conducted as part of a community, even if particular studies are done by single individuals (or small teams).  What any of us finds and reports back becomes part of a much larger body of knowledge.  Thus, it is important that we look at the larger body of knowledge before we actually start our bit to see how we can best contribute.  When I first began interviewing working-class college students, there was only one other similar study I could find, and it hadn’t been published (it was a dissertation of students from poor backgrounds).  But there had been a lot published by professors who had grown up working class and made it through college despite the odds.  These accounts by “working-class academics” became an important inspiration for my study and helped me frame the questions I asked the students I interviewed.  Chapter 9 will provide some pointers on how to search for relevant literature and how to use this to refine your research question.

Chapter 10 serves as a bridge between the two parts of the textbook, by introducing techniques of data collection.  Qualitative research is often characterized by the form of data collection – for example, an ethnographic study is one that employs primarily observational data collection for the purpose of documenting and presenting a particular culture or ethnos.  Techniques can be effectively combined, depending on the research question and the aims and goals of the study.   Chapter 10 provides a general overview of all the various techniques and how they can be combined.

The second part of the textbook moves into the doing part of qualitative research once the research question has been articulated and the study designed.  Chapters 11 through 17 cover various data collection techniques and approaches.  Chapters 18 and 19 provide a very simple overview of basic data analysis.  Chapter 20 covers communication of the data to various audiences, and in various formats.

Chapter 11 begins our overview of data collection techniques with a focus on interviewing , the true heart of qualitative research.  This technique can serve as the primary and exclusive form of data collection, or it can be used to supplement other forms (observation, archival).  An interview is distinct from a survey, where questions are asked in a specific order and often with a range of predetermined responses available.  Interviews can be conversational and unstructured or, more conventionally, semistructured , where a general set of interview questions “guides” the conversation.  Chapter 11 covers the basics of interviews: how to create interview guides, how many people to interview, where to conduct the interview, what to watch out for (how to prepare against things going wrong), and how to get the most out of your interviews.

Chapter 12 covers an important variant of interviewing, the focus group.  Focus groups are semistructured interviews with a group of people moderated by a facilitator (the researcher or researcher’s assistant).  Focus groups explicitly use group interaction to assist in the data collection.  They are best used to collect data on a specific topic that is non-personal and shared among the group.  For example, asking a group of college students about a common experience such as taking classes by remote delivery during the pandemic year of 2020.  Chapter 12 covers the basics of focus groups: when to use them, how to create interview guides for them, and how to run them effectively.

Chapter 13 moves away from interviewing to the second major form of data collection unique to qualitative researchers – observation .  Qualitative research that employs observation can best be understood as falling on a continuum of “fly on the wall” observation (e.g., observing how strangers interact in a doctor’s waiting room) to “participant” observation, where the researcher is also an active participant of the activity being observed.  For example, an activist in the Black Lives Matter movement might want to study the movement, using her inside position to gain access to observe key meetings and interactions.  Chapter  13 covers the basics of participant observation studies: advantages and disadvantages, gaining access, ethical concerns related to insider/outsider status and entanglement, and recording techniques.

Chapter 14 takes a closer look at “deep ethnography” – immersion in the field of a particularly long duration for the purpose of gaining a deeper understanding and appreciation of a particular culture or social world.  Clifford Geertz called this “deep hanging out.”  Whereas participant observation is often combined with semistructured interview techniques, deep ethnography’s commitment to “living the life” or experiencing the situation as it really is demands more conversational and natural interactions with people.  These interactions and conversations may take place over months or even years.  As can be expected, there are some costs to this technique, as well as some very large rewards when done competently.  Chapter 14 provides some examples of deep ethnographies that will inspire some beginning researchers and intimidate others.

Chapter 15 moves in the opposite direction of deep ethnography, a technique that is the least positivist of all those discussed here, to mixed methods , a set of techniques that is arguably the most positivist .  A mixed methods approach combines both qualitative data collection and quantitative data collection, commonly by combining a survey that is analyzed statistically (e.g., cross-tabs or regression analyses of large number probability samples) with semi-structured interviews.  Although it is somewhat unconventional to discuss mixed methods in textbooks on qualitative research, I think it is important to recognize this often-employed approach here.  There are several advantages and some disadvantages to taking this route.  Chapter 16 will describe those advantages and disadvantages and provide some particular guidance on how to design a mixed methods study for maximum effectiveness.

Chapter 16 covers data collection that does not involve live human subjects at all – archival and historical research (chapter 17 will also cover data that does not involve interacting with human subjects).  Sometimes people are unavailable to us, either because they do not wish to be interviewed or observed (as is the case with many “elites”) or because they are too far away, in both place and time.  Fortunately, humans leave many traces and we can often answer questions we have by examining those traces.  Special collections and archives can be goldmines for social science research.  This chapter will explain how to access these places, for what purposes, and how to begin to make sense of what you find.

Chapter 17 covers another data collection area that does not involve face-to-face interaction with humans: content analysis .  Although content analysis may be understood more properly as a data analysis technique, the term is often used for the entire approach, which will be the case here.  Content analysis involves interpreting meaning from a body of text.  This body of text might be something found in historical records (see chapter 16) or something collected by the researcher, as in the case of comment posts on a popular blog post.  I once used the stories told by student loan debtors on the website studentloanjustice.org as the content I analyzed.  Content analysis is particularly useful when attempting to define and understand prevalent stories or communication about a topic of interest.  In other words, when we are less interested in what particular people (our defined sample) are doing or believing and more interested in what general narratives exist about a particular topic or issue.  This chapter will explore different approaches to content analysis and provide helpful tips on how to collect data, how to turn that data into codes for analysis, and how to go about presenting what is found through analysis.

Where chapter 17 has pushed us towards data analysis, chapters 18 and 19 are all about what to do with the data collected, whether that data be in the form of interview transcripts or fieldnotes from observations.  Chapter 18 introduces the basics of coding , the iterative process of assigning meaning to the data in order to both simplify and identify patterns.  What is a code and how does it work?  What are the different ways of coding data, and when should you use them?  What is a codebook, and why do you need one?  What does the process of data analysis look like?

Chapter 19 goes further into detail on codes and how to use them, particularly the later stages of coding in which our codes are refined, simplified, combined, and organized.  These later rounds of coding are essential to getting the most out of the data we’ve collected.  As students are often overwhelmed with the amount of data (a corpus of interview transcripts typically runs into the hundreds of pages; fieldnotes can easily top that), this chapter will also address time management and provide suggestions for dealing with chaos and reminders that feeling overwhelmed at the analysis stage is part of the process.  By the end of the chapter, you should understand how “findings” are actually found.

The book concludes with a chapter dedicated to the effective presentation of data results.  Chapter 20 covers the many ways that researchers communicate their studies to various audiences (academic, personal, political), what elements must be included in these various publications, and the hallmarks of excellent qualitative research that various audiences will be expecting.  Because qualitative researchers are motivated by understanding and conveying meaning , effective communication is not only an essential skill but a fundamental facet of the entire research project.  Ethnographers must be able to convey a certain sense of verisimilitude , the appearance of true reality.  Those employing interviews must faithfully depict the key meanings of the people they interviewed in a way that rings true to those people, even if the end result surprises them.  And all researchers must strive for clarity in their publications so that various audiences can understand what was found and why it is important.

The book concludes with a short chapter ( chapter 21 ) discussing the value of qualitative research. At the very end of this book, you will find a glossary of terms. I recommend you make frequent use of the glossary and add to each entry as you find examples. Although the entries are meant to be simple and clear, you may also want to paraphrase the definition—make it “make sense” to you, in other words. In addition to the standard reference list (all works cited here), you will find various recommendations for further reading at the end of many chapters. Some of these recommendations will be examples of excellent qualitative research, indicated with an asterisk (*) at the end of the entry. As they say, a picture is worth a thousand words. A good example of qualitative research can teach you more about conducting research than any textbook can (this one included). I highly recommend you select one to three examples from these lists and read them along with the textbook.

A final note on the choice of examples – you will note that many of the examples used in the text come from research on college students.  This is for two reasons.  First, as most of my research falls in this area, I am most familiar with this literature and have contacts with those who do research here and can call upon them to share their stories with you.  Second, and more importantly, my hope is that this textbook reaches a wide audience of beginning researchers who study widely and deeply across the range of what can be known about the social world (from marine resources management to public policy to nursing to political science to sexuality studies and beyond).  It is sometimes difficult to find examples that speak to all those research interests, however. A focus on college students is something that all readers can understand and, hopefully, appreciate, as we are all now or have been at some point a college student.

Recommended Reading: Other Qualitative Research Textbooks

I’ve included a brief list of some of my favorite qualitative research textbooks and guidebooks if you need more than what you will find in this introductory text.  For each, I’ve also indicated if these are for “beginning” or “advanced” (graduate-level) readers.  Many of these books have several editions that do not significantly vary; the edition recommended is merely the edition I have used in teaching and to whose page numbers any specific references made in the text agree.

Barbour, Rosaline. 2014. Introducing Qualitative Research: A Student’s Guide. Thousand Oaks, CA: SAGE.  A good introduction to qualitative research, with abundant examples (often from the discipline of health care) and clear definitions.  Includes quick summaries at the ends of each chapter.  However, some US students might find the British context distracting and can be a bit advanced in some places.  Beginning .

Bloomberg, Linda Dale, and Marie F. Volpe. 2012. Completing Your Qualitative Dissertation . 2nd ed. Thousand Oaks, CA: SAGE.  Specifically designed to guide graduate students through the research process. Advanced .

Creswell, John W., and Cheryl Poth. 2018 Qualitative Inquiry and Research Design: Choosing among Five Traditions .  4th ed. Thousand Oaks, CA: SAGE.  This is a classic and one of the go-to books I used myself as a graduate student.  One of the best things about this text is its clear presentation of five distinct traditions in qualitative research.  Despite the title, this reasonably sized book is about more than research design, including both data analysis and how to write about qualitative research.  Advanced .

Lareau, Annette. 2021. Listening to People: A Practical Guide to Interviewing, Participant Observation, Data Analysis, and Writing It All Up .  Chicago: University of Chicago Press. A readable and personal account of conducting qualitative research by an eminent sociologist, with a heavy emphasis on the kinds of participant-observation research conducted by the author.  Despite its reader-friendliness, this is really a book targeted to graduate students learning the craft.  Advanced .

Lune, Howard, and Bruce L. Berg. 2018. 9th edition.  Qualitative Research Methods for the Social Sciences.  Pearson . Although a good introduction to qualitative methods, the authors favor symbolic interactionist and dramaturgical approaches, which limits the appeal primarily to sociologists.  Beginning .

Marshall, Catherine, and Gretchen B. Rossman. 2016. 6th edition. Designing Qualitative Research. Thousand Oaks, CA: SAGE.  Very readable and accessible guide to research design by two educational scholars.  Although the presentation is sometimes fairly dry, personal vignettes and illustrations enliven the text.  Beginning .

Maxwell, Joseph A. 2013. Qualitative Research Design: An Interactive Approach .  3rd ed. Thousand Oaks, CA: SAGE. A short and accessible introduction to qualitative research design, particularly helpful for graduate students contemplating theses and dissertations. This has been a standard textbook in my graduate-level courses for years.  Advanced .

Patton, Michael Quinn. 2002. Qualitative Research and Evaluation Methods . Thousand Oaks, CA: SAGE.  This is a comprehensive text that served as my “go-to” reference when I was a graduate student.  It is particularly helpful for those involved in program evaluation and other forms of evaluation studies and uses examples from a wide range of disciplines.  Advanced .

Rubin, Ashley T. 2021. Rocking Qualitative Social Science: An Irreverent Guide to Rigorous Research. Stanford : Stanford University Press.  A delightful and personal read.  Rubin uses rock climbing as an extended metaphor for learning how to conduct qualitative research.  A bit slanted toward ethnographic and archival methods of data collection, with frequent examples from her own studies in criminology. Beginning .

Weis, Lois, and Michelle Fine. 2000. Speed Bumps: A Student-Friendly Guide to Qualitative Research . New York: Teachers College Press.  Readable and accessibly written in a quasi-conversational style.  Particularly strong in its discussion of ethical issues throughout the qualitative research process.  Not comprehensive, however, and very much tied to ethnographic research.  Although designed for graduate students, this is a recommended read for students of all levels.  Beginning .

Patton’s Ten Suggestions for Doing Qualitative Research

The following ten suggestions were made by Michael Quinn Patton in his massive textbooks Qualitative Research and Evaluations Methods . This book is highly recommended for those of you who want more than an introduction to qualitative methods. It is the book I relied on heavily when I was a graduate student, although it is much easier to “dip into” when necessary than to read through as a whole. Patton is asked for “just one bit of advice” for a graduate student considering using qualitative research methods for their dissertation.  Here are his top ten responses, in short form, heavily paraphrased, and with additional comments and emphases from me:

• Make sure that a qualitative approach fits the research question. The following are the kinds of questions that call out for qualitative methods or where qualitative methods are particularly appropriate: questions about people’s experiences or how they make sense of those experiences; studying a person in their natural environment; researching a phenomenon so unknown that it would be impossible to study it with standardized instruments or other forms of quantitative data collection.
• Study qualitative research by going to the original sources for the design and analysis appropriate to the particular approach you want to take (e.g., read Glaser and Straus if you are using grounded theory )
• Find a dissertation adviser who understands or at least who will support your use of qualitative research methods. You are asking for trouble if your entire committee is populated by quantitative researchers, even if they are all very knowledgeable about the subject or focus of your study (maybe even more so if they are!)
• Really work on design. Doing qualitative research effectively takes a lot of planning.  Even if things are more flexible than in quantitative research, a good design is absolutely essential when starting out.
• Practice data collection techniques, particularly interviewing and observing. There is definitely a set of learned skills here!  Do not expect your first interview to be perfect.  You will continue to grow as a researcher the more interviews you conduct, and you will probably come to understand yourself a bit more in the process, too.  This is not easy, despite what others who don’t work with qualitative methods may assume (and tell you!)
• Have a plan for analysis before you begin data collection. This is often a requirement in IRB protocols , although you can get away with writing something fairly simple.  And even if you are taking an approach, such as grounded theory, that pushes you to remain fairly open-minded during the data collection process, you still want to know what you will be doing with all the data collected – creating a codebook? Writing analytical memos? Comparing cases?  Having a plan in hand will also help prevent you from collecting too much extraneous data.
• Be prepared to confront controversies both within the qualitative research community and between qualitative research and quantitative research. Don’t be naïve about this – qualitative research, particularly some approaches, will be derided by many more “positivist” researchers and audiences.  For example, is an “n” of 1 really sufficient?  Yes!  But not everyone will agree.
• Do not make the mistake of using qualitative research methods because someone told you it was easier, or because you are intimidated by the math required of statistical analyses. Qualitative research is difficult in its own way (and many would claim much more time-consuming than quantitative research).  Do it because you are convinced it is right for your goals, aims, and research questions.
• Find a good support network. This could be a research mentor, or it could be a group of friends or colleagues who are also using qualitative research, or it could be just someone who will listen to you work through all of the issues you will confront out in the field and during the writing process.  Even though qualitative research often involves human subjects, it can be pretty lonely.  A lot of times you will feel like you are working without a net.  You have to create one for yourself.  Take care of yourself.
• And, finally, in the words of Patton, “Prepare to be changed. Looking deeply at other people’s lives will force you to look deeply at yourself.”
• We will actually spend an entire chapter ( chapter 3 ) looking at this question in much more detail! ↵
• Note that this might have been news to Europeans at the time, but many other societies around the world had also come to this conclusion through observation.  There is often a tendency to equate “the scientific revolution” with the European world in which it took place, but this is somewhat misleading. ↵
• Historians are a special case here.  Historians have scrupulously and rigorously investigated the social world, but not for the purpose of understanding general laws about how things work, which is the point of scientific empirical research.  History is often referred to as an idiographic field of study, meaning that it studies things that happened or are happening in themselves and not for general observations or conclusions. ↵
• Don’t worry, we’ll spend more time later in this book unpacking the meaning of ethnography and other terms that are important here.  Note the available glossary ↵

An approach to research that is “multimethod in focus, involving an interpretative, naturalistic approach to its subject matter.  This means that qualitative researchers study things in their natural settings, attempting to make sense of, or interpret, phenomena in terms of the meanings people bring to them.  Qualitative research involves the studied use and collection of a variety of empirical materials – case study, personal experience, introspective, life story, interview, observational, historical, interactional, and visual texts – that describe routine and problematic moments and meanings in individuals’ lives." ( Denzin and Lincoln 2005:2 ). Contrast with quantitative research .

In contrast to methodology, methods are more simply the practices and tools used to collect and analyze data.  Examples of common methods in qualitative research are interviews , observations , and documentary analysis .  One’s methodology should connect to one’s choice of methods, of course, but they are distinguishable terms.  See also methodology .

A proposed explanation for an observation, phenomenon, or scientific problem that can be tested by further investigation.  The positing of a hypothesis is often the first step in quantitative research but not in qualitative research.  Even when qualitative researchers offer possible explanations in advance of conducting research, they will tend to not use the word “hypothesis” as it conjures up the kind of positivist research they are not conducting.

The foundational question to be addressed by the research study.  This will form the anchor of the research design, collection, and analysis.  Note that in qualitative research, the research question may, and probably will, alter or develop during the course of the research.

An approach to research that collects and analyzes numerical data for the purpose of finding patterns and averages, making predictions, testing causal relationships, and generalizing results to wider populations.  Contrast with qualitative research .

Data collection that takes place in real-world settings, referred to as “the field;” a key component of much Grounded Theory and ethnographic research.  Patton ( 2002 ) calls fieldwork “the central activity of qualitative inquiry” where “‘going into the field’ means having direct and personal contact with people under study in their own environments – getting close to people and situations being studied to personally understand the realities of minutiae of daily life” (48).

The people who are the subjects of a qualitative study.  In interview-based studies, they may be the respondents to the interviewer; for purposes of IRBs, they are often referred to as the human subjects of the research.

The branch of philosophy concerned with knowledge.  For researchers, it is important to recognize and adopt one of the many distinguishing epistemological perspectives as part of our understanding of what questions research can address or fully answer.  See, e.g., constructivism , subjectivism, and  objectivism .

An approach that refutes the possibility of neutrality in social science research.  All research is “guided by a set of beliefs and feelings about the world and how it should be understood and studied” (Denzin and Lincoln 2005: 13).  In contrast to positivism , interpretivism recognizes the social constructedness of reality, and researchers adopting this approach focus on capturing interpretations and understandings people have about the world rather than “the world” as it is (which is a chimera).

The cluster of data-collection tools and techniques that involve observing interactions between people, the behaviors, and practices of individuals (sometimes in contrast to what they say about how they act and behave), and cultures in context.  Observational methods are the key tools employed by ethnographers and Grounded Theory .

Research based on data collected and analyzed by the research (in contrast to secondary “library” research).

The process of selecting people or other units of analysis to represent a larger population. In quantitative research, this representation is taken quite literally, as statistically representative.  In qualitative research, in contrast, sample selection is often made based on potential to generate insight about a particular topic or phenomenon.

A method of data collection in which the researcher asks the participant questions; the answers to these questions are often recorded and transcribed verbatim. There are many different kinds of interviews - see also semistructured interview , structured interview , and unstructured interview .

The specific group of individuals that you will collect data from.  Contrast population.

The practice of being conscious of and reflective upon one’s own social location and presence when conducting research.  Because qualitative research often requires interaction with live humans, failing to take into account how one’s presence and prior expectations and social location affect the data collected and how analyzed may limit the reliability of the findings.  This remains true even when dealing with historical archives and other content.  Who we are matters when asking questions about how people experience the world because we, too, are a part of that world.

The science and practice of right conduct; in research, it is also the delineation of moral obligations towards research participants, communities to which we belong, and communities in which we conduct our research.

An administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated. The IRB is charged with the responsibility of reviewing all research involving human participants. The IRB is concerned with protecting the welfare, rights, and privacy of human subjects. The IRB has the authority to approve, disapprove, monitor, and require modifications in all research activities that fall within its jurisdiction as specified by both the federal regulations and institutional policy.

Research, according to US federal guidelines, that involves “a living individual about whom an investigator (whether professional or student) conducting research:  (1) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; or  (2) Obtains, uses, studies, analyzes, or generates identifiable private information or identifiable biospecimens.”

One of the primary methodological traditions of inquiry in qualitative research, ethnography is the study of a group or group culture, largely through observational fieldwork supplemented by interviews. It is a form of fieldwork that may include participant-observation data collection. See chapter 14 for a discussion of deep ethnography. 

A form of interview that follows a standard guide of questions asked, although the order of the questions may change to match the particular needs of each individual interview subject, and probing “follow-up” questions are often added during the course of the interview.  The semi-structured interview is the primary form of interviewing used by qualitative researchers in the social sciences.  It is sometimes referred to as an “in-depth” interview.  See also interview and  interview guide .

A method of observational data collection taking place in a natural setting; a form of fieldwork .  The term encompasses a continuum of relative participation by the researcher (from full participant to “fly-on-the-wall” observer).  This is also sometimes referred to as ethnography , although the latter is characterized by a greater focus on the culture under observation.

A research design that employs both quantitative and qualitative methods, as in the case of a survey supplemented by interviews.

An epistemological perspective that posits the existence of reality through sensory experience similar to empiricism but goes further in denying any non-sensory basis of thought or consciousness.  In the social sciences, the term has roots in the proto-sociologist August Comte, who believed he could discern “laws” of society similar to the laws of natural science (e.g., gravity).  The term has come to mean the kinds of measurable and verifiable science conducted by quantitative researchers and is thus used pejoratively by some qualitative researchers interested in interpretation, consciousness, and human understanding.  Calling someone a “positivist” is often intended as an insult.  See also empiricism and objectivism.

A place or collection containing records, documents, or other materials of historical interest; most universities have an archive of material related to the university’s history, as well as other “special collections” that may be of interest to members of the community.

A method of both data collection and data analysis in which a given content (textual, visual, graphic) is examined systematically and rigorously to identify meanings, themes, patterns and assumptions.  Qualitative content analysis (QCA) is concerned with gathering and interpreting an existing body of material.    

A word or short phrase that symbolically assigns a summative, salient, essence-capturing, and/or evocative attribute for a portion of language-based or visual data (Saldaña 2021:5).

Usually a verbatim written record of an interview or focus group discussion.

The primary form of data for fieldwork , participant observation , and ethnography .  These notes, taken by the researcher either during the course of fieldwork or at day’s end, should include as many details as possible on what was observed and what was said.  They should include clear identifiers of date, time, setting, and names (or identifying characteristics) of participants.

The process of labeling and organizing qualitative data to identify different themes and the relationships between them; a way of simplifying data to allow better management and retrieval of key themes and illustrative passages.  See coding frame and  codebook.

A methodological tradition of inquiry and approach to analyzing qualitative data in which theories emerge from a rigorous and systematic process of induction.  This approach was pioneered by the sociologists Glaser and Strauss (1967).  The elements of theory generated from comparative analysis of data are, first, conceptual categories and their properties and, second, hypotheses or generalized relations among the categories and their properties – “The constant comparing of many groups draws the [researcher’s] attention to their many similarities and differences.  Considering these leads [the researcher] to generate abstract categories and their properties, which, since they emerge from the data, will clearly be important to a theory explaining the kind of behavior under observation.” (36).

A detailed description of any proposed research that involves human subjects for review by IRB.  The protocol serves as the recipe for the conduct of the research activity.  It includes the scientific rationale to justify the conduct of the study, the information necessary to conduct the study, the plan for managing and analyzing the data, and a discussion of the research ethical issues relevant to the research.  Protocols for qualitative research often include interview guides, all documents related to recruitment, informed consent forms, very clear guidelines on the safekeeping of materials collected, and plans for de-identifying transcripts or other data that include personal identifying information.

Introduction to Qualitative Research Methods Copyright © 2023 by Allison Hurst is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License , except where otherwise noted.

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• 1 University of Nebraska Medical Center
• 2 GDB Research and Statistical Consulting
• 3 GDB Research and Statistical Consulting/McLaren Macomb Hospital
• PMID: 29262162
• Bookshelf ID: NBK470395

Qualitative research is a type of research that explores and provides deeper insights into real-world problems. Instead of collecting numerical data points or intervening or introducing treatments just like in quantitative research, qualitative research helps generate hypothenar to further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much. It could be structured as a standalone study, purely relying on qualitative data, or part of mixed-methods research that combines qualitative and quantitative data. This review introduces the readers to some basic concepts, definitions, terminology, and applications of qualitative research.

Qualitative research, at its core, asks open-ended questions whose answers are not easily put into numbers, such as "how" and "why." Due to the open-ended nature of the research questions, qualitative research design is often not linear like quantitative design. One of the strengths of qualitative research is its ability to explain processes and patterns of human behavior that can be difficult to quantify. Phenomena such as experiences, attitudes, and behaviors can be complex to capture accurately and quantitatively. In contrast, a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a particular time or during an event of interest. Quantifying qualitative data certainly is possible, but at its core, qualitative data is looking for themes and patterns that can be difficult to quantify, and it is essential to ensure that the context and narrative of qualitative work are not lost by trying to quantify something that is not meant to be quantified.

However, while qualitative research is sometimes placed in opposition to quantitative research, where they are necessarily opposites and therefore "compete" against each other and the philosophical paradigms associated with each other, qualitative and quantitative work are neither necessarily opposites, nor are they incompatible. While qualitative and quantitative approaches are different, they are not necessarily opposites and certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated.

Copyright © 2024, StatPearls Publishing LLC.

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Conflict of interest statement

Disclosure: Steven Tenny declares no relevant financial relationships with ineligible companies.

Disclosure: Janelle Brannan declares no relevant financial relationships with ineligible companies.

Disclosure: Grace Brannan declares no relevant financial relationships with ineligible companies.

• Introduction
• Issues of Concern
• Clinical Significance
• Enhancing Healthcare Team Outcomes
• Review Questions

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Research Article

A qualitative exploration of barriers to efficient and effective structured medication reviews in primary care: Findings from the DynAIRx study

Roles Data curation, Formal analysis, Methodology, Validation, Writing – original draft, Writing – review & editing

Affiliations Academic Unit for Ageing & Stroke Research, Bradford Teaching Hospitals NHS Foundation Trust, University of Leeds, Bradford, United Kingdom, Faculty of Medicine and Health, School of Medicine, University of Leeds, Leeds, United Kingdom

Roles Data curation, Formal analysis, Validation, Writing – original draft, Writing – review & editing

Affiliation Institute of Population Health, University of Liverpool, Liverpool, United Kingdom

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Supervision, Validation, Writing – original draft, Writing – review & editing

Affiliations Institute of Population Health, University of Liverpool, Liverpool, United Kingdom, Directorate of Mental Health and Learning Disabilities, Powys Teaching Health Board, Bronllys, United Kingdom

Roles Conceptualization, Formal analysis, Investigation, Methodology, Supervision, Validation, Writing – review & editing

Affiliation General Practice and Primary Care, School of Health and Wellbeing, University of Glasgow, Glasgow, United Kingdom

Roles Conceptualization, Investigation, Methodology, Supervision, Writing – review & editing

Roles Conceptualization, Supervision, Writing – review & editing

Roles Conceptualization, Formal analysis, Investigation, Methodology, Validation, Writing – review & editing

Roles Writing – review & editing

Affiliations Faculty of Medicine and Health, School of Medicine, University of Leeds, Leeds, United Kingdom, Leeds Institute for Data Analytics, University of Leeds, Leeds, United Kingdom

Roles Conceptualization, Writing – review & editing

Affiliation Department of Computer Science, University of Liverpool, Liverpool, United Kingdom

Affiliation Division of Informatics, Imaging & Data Science, University of Manchester, Manchester, United Kingdom

Affiliation NIHR Applied Research Collaboration North West Coast, United Kingdom

Affiliations Leeds Institute for Data Analytics, University of Leeds, Leeds, United Kingdom, School of Computing, University of Leeds, Leeds, United Kingdom

Roles Project administration, Resources

Affiliation Department of Electrical Engineering and Electronics, University of Liverpool, Liverpool, United Kingdom

Affiliation Merseycare NHS Foundation Trust, Liverpool, United Kingdom

Roles Conceptualization, Funding acquisition, Investigation, Methodology, Resources, Supervision, Writing – review & editing

•  [ ... ],

Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliations Centre for Experimental Therapeutics, University of Liverpool, Liverpool, United Kingdom, Liverpool University Hospitals NHS Foundation Trust, Liverpool, United Kingdom

• [ view all ]
• [ view less ]
• Aseel S. Abuzour, 
• Samantha A. Wilson, 
• Alan A. Woodall, 
• Frances S. Mair, 
• Andrew Clegg, 
• Eduard Shantsila, 
• Mark Gabbay, 
• Michael Abaho, 
• Asra Aslam, 

• Published: August 30, 2024
• https://doi.org/10.1371/journal.pone.0299770
• Reader Comments

Introduction

Structured medication reviews (SMRs), introduced in the United Kingdom (UK) in 2020, aim to enhance shared decision-making in medication optimisation, particularly for patients with multimorbidity and polypharmacy. Despite its potential, there is limited empirical evidence on the implementation of SMRs, and the challenges faced in the process. This study is part of a larger DynAIRx (Artificial Intelligence for dynamic prescribing optimisation and care integration in multimorbidity) project which aims to introduce Artificial Intelligence (AI) to SMRs and develop machine learning models and visualisation tools for patients with multimorbidity. Here, we explore how SMRs are currently undertaken and what barriers are experienced by those involved in them.

Qualitative focus groups and semi-structured interviews took place between 2022–2023. Six focus groups were conducted with doctors, pharmacists and clinical pharmacologists (n = 21), and three patient focus groups with patients with multimorbidity (n = 13). Five semi-structured interviews were held with 2 pharmacists, 1 trainee doctor, 1 policy-maker and 1 psychiatrist. Transcripts were analysed using thematic analysis.

Two key themes limiting the effectiveness of SMRs in clinical practice were identified: ‘Medication Reviews in Practice’ and ‘Medication-related Challenges’. Participants noted limitations to the efficient and effectiveness of SMRs in practice including the scarcity of digital tools for identifying and prioritising patients for SMRs; organisational and patient-related challenges in inviting patients for SMRs and ensuring they attend; the time-intensive nature of SMRs, the need for multiple appointments and shared decision-making; the impact of the healthcare context on SMR delivery; poor communication and data sharing issues between primary and secondary care; difficulties in managing mental health medications and specific challenges associated with anticholinergic medication.

SMRs are complex, time consuming and medication optimisation may require multiple follow-up appointments to enable a comprehensive review. There is a need for a prescribing support system to identify, prioritise and reduce the time needed to understand the patient journey when dealing with large volumes of disparate clinical information in electronic health records. However, monitoring the effects of medication optimisation changes with a feedback loop can be challenging to establish and maintain using current electronic health record systems.

Citation: Abuzour AS, Wilson SA, Woodall AA, Mair FS, Clegg A, Shantsila E, et al. (2024) A qualitative exploration of barriers to efficient and effective structured medication reviews in primary care: Findings from the DynAIRx study. PLoS ONE 19(8): e0299770. https://doi.org/10.1371/journal.pone.0299770

Editor: Kathleen Bennett, Royal College of Surgeons in Ireland, IRELAND

Received: February 16, 2024; Accepted: June 24, 2024; Published: August 30, 2024

Copyright: © 2024 Abuzour et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper and its Supporting Information files.

Funding: DynAIRx has been funded by the National Institute for Health and Care Research (NIHR) Artificial Intelligence for Multiple Long-Term Conditions (AIM) call (NIHR 203986). MG is partly funded by the NIHR Applied Research Collaboration North West Coast (ARC NWC). AW is partly funded by a Health and Care Research Wales Research Time Award (NHS-RTA-21-02). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. This research is supported by the NIHR ARC NWC. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Competing interests: No competing interests

Structured medication reviews (SMRs) were introduced in the United Kingdom (UK) in October 2020 and incorporated into the NHS England Directed Enhanced Service (DES) contract for 2021 [ 1 ]. SMRs represent a National Institute for Health and Care Excellence (NICE)-approved clinical intervention facilitating shared-decision making between clinicians and patients, to inform treatment decisions. The objective is to reduce medication-related harm in patients with complex or problematic polypharmacy [ 1 , 2 ]. While General Practitioners (GPs), pharmacists and advanced nurse practitioners (ANPs) who meet training criteria can conduct SMRs, the prevailing expectation is for clinical pharmacists within Primary Care Networks (PCNs) to assume primary responsibility as a commissioned service [ 3 ]. The varied methods employed by PCNs to proactively identify patients suitable for SMRs, and conduct these reviews, is contingent on available resources and capacity. Anecdotal evidence suggests that PCNs currently use limited digital tools, such as searching electronic health records (EHR) based on the total number of drugs prescribed or disease codes, to identify patients at risk of medication-related harm.

There is sparse empirical evidence reporting on the implementation of SMRs, their impact on patient outcomes, and the challenges faced by healthcare professionals (HCPs) and patients during SMRs [ 4 , 5 ]. This scarcity of evidence is unsurprising given that SMRs were introduced in 2020 amidst the COVID-19 pandemic [ 1 ]. Nonetheless, estimates suggest a percentage reduction in per-patient medicines following an SMR ranging from 2.7% to 9.9%, with up to 19.5% reduction in use for the highest-risk group in care homes [ 6 ].

Patients with complex multimorbidity and polypharmacy, whose medicines have not been optimised are at risk of adverse outcomes and medication-related harm [ 7 ]. The definition of complex multimorbidity is contentious [ 8 ] but here we are referring to patients living with four or more conditions, which is strongly associated with polypharmacy [ 8 , 9 ]. The use of data from EHRs to develop evidence-based digital health tools can be a promising resource to assist HCPs in conducting targeted, efficient and effective SMRs.

The NIHR-funded DynAIRx study (Artificial Intelligence for dynamic prescribing optimisation and care integration in multimorbidity) aims to develop AI-driven tools that integrate information from electronic health and social care records, clinical guidelines and risk-prediction models in order to support the delivery of SMRs [ 10 ]. The DynAIRx project will produce machine learning models, dashboards, and different tools including Causal Inferencing to provide clinicians and patients with evidence-based information to prioritise patients at most risk of harm and/or patients most likely to benefit from SMRs. Aligned with the NICE multimorbidity guidelines, [ 7 , 11 ] DynAIRx will focus on three patient groups at high-risk of rapidly worsening health from multimorbidity: (a) individuals with mental and physical health co-morbidity, [ 12 – 14 ] in whom the prescribing for mental health improvement can lead to adverse physical health consequences; (b) those with complex multimorbidity (four or more long-term health conditions taking ten or more drugs); [ 9 , 15 ] and (c) older people with frailty who are at high risk of adverse outcomes [ 16 ].

The initial step towards introducing AI-driven prescribing support tools into clinical practice involves understanding the current scope of work, how SMRs are presently undertaken and by whom, the time required in real-world clinical practice to undertake them, and crucially, investigate what determinants act as potential barriers to efficient and effective SMR implementation. The aim of this study was to explore how SMRs are undertaken and what barriers those undertaking them (and receiving them) experience.

Participants and recruitment

This study sought to recruit health care or management professionals working in health care settings (primary care in the community or secondary care in hospital services) across the UK where review of prescription medications is a regular part of the clinical workload. This included those working in General Practice, secondary care hospital services (geriatric medicine, clinical pharmacology, falls clinics, mental health practitioners), clinical commissioning of services or management of clinical services (practice managers), and pharmacists, including PCN pharmacists (those involved in conducting SMRs across several neighbouring GP practices). Patient participants included those with (a) multiple and physical co-morbidities; (b) complex multimorbidity; (c) older people with frailty. Patient and carer representatives of the three key multimorbidity groups outlined above were also invited. This included recruiting adult individuals (over the age of 18) with/or caring for someone with multiple (4 or more) long-term health conditions, co-existing mental and physical health problems, prescribed ≥10 regular medications, frailty.

Purposive sampling identified potential HCP participants that were known to be involved in medicines optimisation services through the researchers own clinical and professional networks. Snowballing (wherein research participants were asked to assist the recruitment by attempting to identify other potential participants) was employed to identify contacts through existing service providers along with advertisement in GP forums and at national events for individuals participating in clinical polypharmacy research [ 17 ]. Purposive sampling of potential patient representatives were identified through advertisement across the NIHR Applied Research Collaboration public advisor networks and through research databases at the researchers host institutions. Potential participants were provided with study information and an invitation to participate. Participants received comprehensive briefings from researchers about the study, and written consent was obtained prior to the focus group or interview participation. Withdrawal of consent was permitted at any stage, even after the focus group or interview.

Ethical approval

The Newcastle North Tyneside Research Ethics Committee (REC reference:22/NE/0088) granted ethical approval for the DynAIRx study.

Data collection

Data collection occurred from November 2022 to November 2023. Focus groups and semi-structured interviews were conducted to gather participant views. Focus groups were utilised for patient participants in order to stimulate discussion of common and shared experiences. Individual interviews supplemented the HCP focus groups in order to ensure as many HCPs could be involved as possible owing to time constraints for some HCPs. Focus group topic guides and interview schedules were developed and refined by the clinical members of the research team (LW, AA, AW, FM, AG) and tailored to HCP and patient groups. The topic guides (see S1 Appendix ) included questions exploring the experience of conducting or receiving SMRs, barriers to undertaking them and opinions on key medication challenges in multimorbidity groups from both the clinician and patient perspective. Sessions occurred in person and online (via Microsoft Teams), lasting from 49 to 109 minutes. Audio recordings underwent verbatim transcription and anonymisation to remove any potentially identifiable information. Each participant was assigned a code, and recordings were subsequently deleted. Data collection and analysis occurred concurrently. The Consolidated Criteria for Reporting Qualitative Research checklist was used to ensure comprehensive reporting of our qualitative study (see S1 Appendix ). No participant withdrew consent for their data to be used in the study.

Data analysis

Transcripts were imported into QSR NVivo 12® and analysed using thematic analysis [ 18 ]. Transcripts were read to familiarise researchers with the data. Inductive reasoning guided the initial coding by AA and SW, who collated and examined codes to identify themes. The multidisciplinary coding team (AA, SW, LW, AW, FM) consisted of clinicians and researchers, and engaged in regular reflexive practices to ensure a rigorous and transparent qualitative study. Recognising the diverse expertise and perspectives within the team, we held regular coding clinics where codes and initial themes were reviewed and discussed. By openly sharing our perspectives and challenging each other’s viewpoints, we aimed to balance our interpretations and avoid overemphasis on any single disciplinary lens. This allowed us to critically examine how our professional backgrounds and assumptions might shape the interpretation of findings. These reflexive sessions were instrumental in identifying and mitigating biases, ensuring that our analysis remained grounded in the participants’ narratives rather than our preconceptions. Themes were defined and supported by quotes. Detailed notes of discussions and developments were kept to ensure analytical rigour and plausibility [ 19 ]. The remaining dataset underwent hybrid inductive and deductive thematic analysis using the inductively defined themes, with codes and themes iteratively revised. Once all team members agreed no new codes or meaning to influence thematic analysis were emerging, we assumed saturation was achieved [ 20 ]. At this point, further recruitment was stopped.

Six focus groups with HCPs (n = 21) and 3 patient focus groups (n = 13) were conducted. A further five semi-structured interviews with HCPs took place (see Table 1 for details).

• PPT PowerPoint slide
• PNG larger image
• TIFF original image

https://doi.org/10.1371/journal.pone.0299770.t001

Two overarching themes developed from analysis of the HCP and patient interviews and focus groups, within which a number of sub-themes emerged:

• Limited availability of digital tools to assist in identifying and prioritising patients for a SMR
• Organisational challenges and patient factors affecting patient engagement for a SMR
• Time consuming “detective work”
• SMRs require multiple appointments
• Influence of healthcare context on delivering SMR
• Factors influencing deprescribing discussions
• Poor communication and data sharing between primary and secondary care
• Difficulties managing mental health medication for prescriber and patient
• Challenges around anticholinergic medication optimisation for prescriber

Fig 1 displays each key theme from this study and a detailed list of the barriers to each stage of the SMR process. Supplementary quotes for each theme can be found in S2 Appendix .

https://doi.org/10.1371/journal.pone.0299770.g001

• a. Limited availability of digital tools to assist in identifying and prioritising patients for a SMR

PCN pharmacists reported proactively identifying and prioritising patients to conduct SMRs. Patient identification was based on the criteria outlined by the DESGP contract, which includes patients in care homes (both nursing and residential facilities), individuals with complex multimorbidity and polypharmacy, urgently referred patients, older individuals encountering medication-related harms, and patients recently discharged from hospital. HCPs also referenced using available healthcare management automated search tools within the EHR, including ‘Ardens search’ [ 21 ] and ‘ProActive Register Management (PARM) diabetes’ [ 22 ], to identify pre-determined conditions, prescribing alerts and other variables that form part of the practice workload. They also used targets from the Investment and Impact Fund (IIF) for patient identification (IIF is an incentive scheme where PCNs can improve health and the quality of care for patients with multimorbidity), which participants described as beneficial but a waste of resources in the context of SMRs which should focus on patients with complex multimorbidity and polypharmacy [ 23 ]. Despite this, HCPs noted a limited number of digital tools to assist in identifying and prioritising patients for a SMR.

“I’ll be honest that we’ve not really had any tools that have been developed specific for supporting SMR.” (Pharmacist 2, Interview)

Since the introduction of EHRs in the NHS, HCPs are expected to assign ‘SNOMED codes’ to document patients with specific diagnostic, symptom or treatment codes in a logical hierarchical manner to specify clinical information [ 24 ]. These codes facilitate searches for specific medical conditions, symptoms and treatments within the GP EHR, facilitating the identification of individuals requiring an SMR. Pharmacists noted that EHR searches do not adequately consider the complexity of patients, making it challenging to stratify those that would benefit most from an SMR. Additionally, participants highlighted a lack of sensitivity and specificity in the current search mechanisms (meaning the searches either do not identify all the intended patients or identify too many).

“ The actual indicator that my team has been focusing on is supposed to be the ones where patients are prone to medication errors … but when I actually look at the patients, I haven’t got a clue why the actual computer system has decided that most of the time.” (Participant 1, Pharmacist FG1)

HCPs were concerned that the identification of patients who would benefit from an SMR could exceed the clinical capacity of the staff available to meet the need. They felt that any digital tool used to prioritise patients’ needs should match the clinical capacity of the practice.

“ The tools have to be a bit cleverer … We can generate a list of patients today … PCNs at the moment essentially do that, but what you have to do is almost the list that’s generated to the capacity … People would not switch it on if they felt that it could generate lots of patients you would not then see.” (Policy-maker, Interview)

• b. Organisational challenges and patient factors affecting patient engagement for a SMR

GPs or secondary care clinicians (excluding clinical pharmacologists) often conducted opportunistic medication reviews, compared to the proactive SMRs conducted by PCN pharmacists. In alignment with the DES requirements, HCPs described how the task of conducting an SMR was contingent upon organisational contracts, practice size, and staff availability. The presence of a PCN pharmacist for SMRs facilitated streamlined tasks, enabling GPs to focus on patients with more complex medical profiles. GPs voiced concerns about burnout in areas where demand for SMR exceeded the clinical capacity to undertake them. This challenge was particularly pronounced in regions of lower socioeconomic status where patients often presented with complex multimorbidity and polypharmacy at a younger age, especially those with co-morbid mental and physical health problems. Moreover, respondents felt that patients residing in deprived areas were less likely to attend scheduled SMRs, compelling GPs to resort to opportunistic reviews. This highlights potential inequity in access to SMRs and overall health surveillance.

“In the poorer area of the practice there’s no clinical pharmacist, that’s all done opportunistically, if done at all, by the GP partners there. I think that there’s a couple that are approaching burn out, if not complete burn out and the practice is almost run by locums. So, when I’m going in there, it’s quite tough and I will often see medications that are inappropriately prescribed, polypharmacy, several of the same drugs, and I will opportunistically undertake a structured medical review.” (Participant 3, GP FG1)

• c. Time consuming “detective work”

Whether HCPs identified patients proactively or opportunistically, the preparation time for a medication review ranged from 10 minutes to 1 hour. Several factors influenced this preparation time, including the availability of information, case complexity, barriers to accessing information, information density, and time constraints. The challenge in finding and collating information within the patient’s clinical records constituted a significant portion of the preparation time. For instance, discharge letters from hospitals are often located as attachments within the patient record, requiring HCPs to locate and read the letter. These necessary preparatory activities take away from the face-to-face time available with the patient.

“ Probably double the amount of prep time than it was actually with the patient. I mean, granted we did spend a while with the patient because we both like to talk, and the patient certainly did, but I think, and that’s the problem, isn’t it? You get the best information out of your patient when you let them talk and you let them tell you lots of things that you wouldn’t normally ask, but you haven’t got the time to do that so it’s tricky isn’t it to find the balance. But the biggest thing with the prep time was getting the information.” (Participant 3, Pharmacist FG1)

HCPs also conveyed frustration regarding the substantial time required to determine the original indication for a particular prescription and the ongoing necessity for it, even during major transition periods such as a patient’s admission to a care home.

“ We don’t get enough actual structured reviews, so they’ll be getting put on medication, people in care homes, and then left on those medicines. There’s no recognition of the changes. As you move in a care home, you’re generally more frailer, your renal function, haematic function might not be as great and, you know, you’re not moving as much, so your need for some medicines might not be as great as it was when the medicine was first started. ” (Policy-maker, Interview) “So along with what you said about deprescribing Selective Serotonin Reuptake Inhibitors (SSRIs) , especially , you know they’ve been on them for 4–5 years and they are adamant they don’t want to reduce them or stop them or have any sort of conversation about it , yeah , they’re quite challenging I think . Also , I think sometimes you can’t quite work out what medications people have been on . I mean if we talk about SSRIs they may have tried multiple different ones in the past and sometimes it’s difficult to work out what they’ve been on without having to go through the long , long list searching all the different medications that are SSRIs that they’ve tried . It would be so helpful if you know it could just bring up yeah been used before , and then know which one you could try…knowing that you want to try a different one . ” (Participant 6, GP FG1)

Although it is possible within the EHR system to link the prescription of an individual drug to its clinical indication, anecdotal evidence suggests this is time consuming and therefore may not be done in clinical practice.. As such, indications for prescribed medicines are recorded in the free text for the consultation which can easily become obscured over time within the extensive information contained in the clinical record. Examining the clinical free text for this information was emphasised as a challenge in efficiently conducting SMRs.

“ Although in my letters I would clearly state to the GP why I am prescribing the second line antipsychotic just so that people know, but over time that tends to get lost, the rationale for that prescribing tends to get lost and before you know you leave post, somebody else comes and begins to increase that second antipsychotic you know, so that becomes a problem. ” (Participant 1, Psychiatrist FG)

Moreover, existing EHRs are not adept at presenting patient histories in a manner conducive to HCPs pinpointing areas for potential deprescribing. This deficiency in the system leads to a cumulative high pill burden for patients, as illustrated in the quote below.

“ At the age of [ 18 – 20 ], I was diagnosed with bipolar. I am now [71–74] and I have lived for that period of time on medication, a lot of medication actually … I counted the number of tablets and my boxes on my bedside the other day and there was 13 different tablets, so that is what I am being prescribed by my GP. ” (Patient 1, Mental and physical co-morbidities FG)

Patients also expressed uncertainty about the initial reasons for starting medications. Patients reported receiving medications for many years and being unsure whether the medication was still necessary.

“ She is also on a daily injection of adult growth hormone which another consultant put her on at the time and she has been having them for probably 10 to 15 years, and no-one seems to know now who initially prescribed it and who is in charge of that. I am concerned, does she really need them? She is having them every day … Initially it was an asset to go with the immunodeficiency but now I don’t really know. ” (Patient 5, Mental and physical co-morbidities FG)

• d. SMRs require multiple appointments

SMRs typically lasted a minimum of 30 minutes, often extending beyond this duration. The variability in duration was contingent upon the patient’s complexity and the focused nature of the review. Allowing adequate time to address broader health concerns was deemed crucial, enabling the identification of potential issues requiring deeper exploration by the clinician.

HCPs acknowledged that SMRs were not a singular event, and patients might necessitate multiple appointments for a comprehensive review. Consequently, EHR systems were recognised as needing functionality to alert HCPs to schedule additional appointments after the initial SMR, emphasising the iterative and ongoing nature of medication reviews.

“ The first time I see patients, you want almost a bit of a holistic conversation, but actually when you start making interventions you go with what matters most to the patient or where the biggest risk is and you then table the others … You can imagine that being 2 or 3 hours in 4 different appointments before you get to the bottom of where you want to be … I think we had to contact on average about 2 to 3 times per patient, but there were more complex patients as well … I don’t think you can stop medicines or optimise medicines without seeing that patient again as least once. ” (Policy-maker interview)

Patients expressed a desire to be involved in the decision-making during reviews and valued the opportunity to discuss issues such as how medications fit into their routines and other resources that may be available to them.

"I’ve got a series of chronic things, take a load of pills and they’re each for separate things, and I have been concerned for years whether there’s any interaction with them, between them. And also they make me feel tired all the time and perhaps there are some of them where I could actually get rid of them." (Patient 1, Older people with frailty FG)

• e. Influence of healthcare context on delivering SMR

The duration of conducting a SMR was also contingent on the specific healthcare setting in which it took place. One pharmacist highlighted that SMRs conducted in care homes lacked a strict time limit and were oriented towards achieving specific outcomes, such as the number of medicines deprescribed in particular patient groups. This reflected the contextual variability in the conduct and objectives of SMRs, emphasising the need for flexibility in the approach based on the healthcare environment and patient population.

“ We were just told take whatever time you need but because we were not measured on the quantity, we were measured on the quality, and we were recorded the number of medicines basically stopped and in particular groups actually so, and then that would have gone on the report because that was the way of showing what we were doing and the basic value for money I guess .” (Participant 1, Pharmacist FG1)

The emphasis placed on a medication list varied depending on the reviewer and the healthcare setting. A pharmacist working in secondary care articulated a tendency to allocate less attention to certain medicines in a hospital setting, prioritising focus on medications more likely to cause harm. This perspective highlights the nuanced approach that different HCPs may adopt based on their expertise and the specific context in which they operate.

“ At the moment, the bisphosphonate would be something that I’m less concerned about it a very high acuity environment, that’s the thing that I’m probably going to, maybe if I get a chance, write in the discharge summary for the GP to check up on whether or not that’s still appropriate. Whereas I’m chasing those big harms .” (Participant 2, Pharmacist FG1)

• f. Factors influencing deprescribing discussions

Discussions around deprescribing between HCPs and patients were reported to be influenced by several factors. These included the specific type of medicine to be deprescribed, the patient’s willingness to discontinue the medication, sociodemographic location, availability of additional health services in the area, whether the medication was initially prescribed in primary or secondary care and the existence of pre-established stopping criteria for certain medications (e.g., bisphosphonates for more than 5 years). Additionally, HCPs and patients acknowledged a degree of reluctance to engage in deprescribing due to perceived potential risks associated with the cessation of certain medications. These multifaceted factors contribute to the complexity and individualised nature of deprescribing discussions within the healthcare context.

“I find it really, really difficult because all of the guidelines will say, oh, you should have this patient on statins, etc., and you think I really probably shouldn’t they’re 95, but having stopped them in the past then a patient unfortunately ends up with a stroke, they go to hospital, the hospital tells them it’s because their GP stopped their statin and puts them back on .” (Participant 2, GP FG2) “ The antidepressant one is interesting . So , I did work for 9 years in a really deprived area . . . SSRIs for a long time and they were pretty reluctant to come off it but usually willing to accept if it didn’t work out just put them back on it . It just meant in a much more middle-class area there’s the opposite where they’re all desperate to come off it and probably coming off it far too soon . So , I don’t think it needs to be doctor-led , it seems to be more about their external pressures and there’s been a lot of areas done in deprived communities with link workers and social prescribers and I think if you’re going to look at polypharmacy in these sort of groups then that’s probably the way to do it stopping all their meds .” (Participant 4, GP FG1)

In one case, a pharmacist highlighted the challenges associated with decision-making when optimising medicines for complex, younger patients, emphasising the impact of side-effects on their quality of life. Equally, the importance of considering quality of life in frail older adults with polypharmacy was acknowledged, although perceived as less complicated than in younger adults.

"I know well that’s it isn’t it, it’s not necessarily that they’re a complex medicine it’s that there is evidence to say that this can prolong your life but it’s causing them that much upset, so it’s, for me it’s not necessarily the, I can’t think of any particular group of drug its more the younger you get, you know 50 is very young and that you have got a lot of life left to live so that’s when it becomes more of a clinical decision for me that as a pharmacist I don’t feel like I would be able to make" (Participant 1, Pharmacist FG1)

• 2. Medication-related Challenges

Potential for medication-related harm identified by our key stakeholder groups included issues with specific medicines, conditions, and risky medication combinations; mental health medications; prescriptions from specialists; anticholinergic medicines; difficulties in determining prescription timelines to assist in decision-making; challenges with younger complex patients; and siloed care.

• a. Poor communication & data sharing between primary and secondary care

HCPs identified the challenge of extracting information from hospital discharge letters as a key source of frustration. Patients, in particular, assumed that EHRs seamlessly connected primary and secondary care, and in some cases, their community pharmacy. This assumption left patients bewildered and, in certain cases, reliant on the HCPs knowing the complete narrative behind their health records. The disjointed communication and misconceptions surrounding record integration emphasised the need for improved interoperability to enhance the continuum of care.

“ We will be waiting a week for an outpatient letter to come through and it’s really confusing, stop this, change that, increase the dose here, and you’re kind of stuck in the middle. So sometimes the patient will have left that meeting there and it will be ‘like go and see your GP and they will do this bit’, well [that’s] not happening until I’ve got that letter. There is that real mismatch of communication. ” (Participant 1, GP FG2) “ When the repeat prescription came through , despite the fact that the surgery had received the discharge letter , everything was all wrong , and this is just one of those things that happens . So , you get a review and it is whether that data from that review and the story behind it and who it goes back to and whether it is acted on , I think that is important .” (Patient 3, Complex multimorbidity FG)

Communication gaps between GPs, specialist clinicians, and patients were evident due to varying expectations. GPs expressed challenges in managing specialist medications with patients, including concerns about patients’ ability to self-manage their medicines. These challenges highlighted aspects of fragmented care between primary care and specialist clinicians. HCPs also cited difficulties and reluctance in communicating and potentially engaging in conflict with specialist doctors. Participants described specialist doctors as lacking a holistic view when prescribing for patients, favouring certain medicines, and having limited knowledge in drug interactions.

“I think multidisciplinary is key, however when I notice that I liaise with specialists, depending on who I speak to, their drug is the most important and trying to get a consensus about what is best for the patient is obviously one of the challenges like that’s how we got in this situation to begin with you know, so I do find that’s one of the challenges. so, I think you need someone who is you know, who is a specialist but has also got a sort of holistic view of patient care as well which doesn’t always happen in secondary care, but sometimes does.” (Participant 3, Polypharmacy FG)

Participants noted that central nervous system medicines had complicated medication regimens and hence required more coordinated care and responsibility between the specialist prescriber and GP. Addressing these challenges calls for enhanced collaboration, knowledge exchange, and a holistic approach to patient care between primary care and specialist clinicians.

“ I find it, with the pain management clinic, they stop medication, give you a list of all these other tablets you need to start to see how things go and then sort of leave you to it, discharge the patient in your hands and expect you to sort of manage it all. And the same thing is with migraine and headaches from neurology. That’s just a minefield … I think when you’re in specialty, you feel that you can give any sort of long protracted complicated regime and the patient is just going to manage it because that’s the only medication that you think that they’re on. So yeah, they can be quite difficult .” (Participant 5, GP FG1) “ He [GP] says that we can’t actually change any medication to do with your bipolar , that has got to be done by your psychiatrists … I don’t think they would change anything to do with psychiatry .” (Patient 1, Mental and physical co-morbidities FG)

• b. Difficulties managing mental health medication

Mental health medication and management emerged as a consistent sub-theme across key HCP stakeholder groups, irrespective of their professional background. Both doctors and pharmacists described difficulties in monitoring and adjusting psychiatric medicines, including uncertainties about how to address specific issues related to psychiatric medicines. Participants expressed a sense of being ‘out of their depth’, particularly concerning antipsychotic medicines. They conveyed a lack of confidence in assessing the risks and benefits of antipsychotic prescribing, feeling deskilled in this specific area of medication management, and finding it challenging to safely challenge prescribers. This sense of unease prompted participants to seek ways of contacting the mental health team, only to encounter additional hurdles, such as difficulties in locating relevant information within patient records to facilitate multidisciplinary coordinated patient care.

“ But the other one is someone with very complex psychiatric problems, still maybe under the mental health team, and I haven’t got really access to the details apart from maybe I’ve got, you know, some of the other diagnoses. But if I think maybe one of those drugs is potentially causing more harm than could then I’m not clear how then to action that and who to speak to and who were they actually seeing ” (Participant 1, Polypharmacy FG)

For example, a clinical pharmacologist explained that evaluating the success of managing antipsychotics is not as straightforward as assessing physical health conditions. This complexity may contribute to the observed lack of confidence among HCPs when it comes to deprescribing psychiatric medicines. The nuanced nature of mental health outcomes, compared to more tangible markers of success in physical health, adds an additional layer of intricacy to the decision-making process in psychiatry. This includes the complexity of managing mental health medication.

“ The biggest challenge group that I think we face in a deprived area is the patients who are on long term opioid medication, long term neuropathic meds, they’ve probably got a diagnosis of fibromyalgia, they’ve probably got personality disorder plus / minus mental health problems. And the issues that we have is that they’ve almost been sequentially added medication on because GPs don’t really often know what to do with them unless you have a special interest in that field like I do. And when they go and see pharmacists, they are very challenging to pharmacists and pharmacists don’t have the clinical knowledge to be able to sift through what can often be quite dramatic presentations. ” (Participant 1, GP FG1)

• c. Challenges around anticholinergic medicines

Anticholinergic medicines, which inhibit the neurotransmitter acetylcholine involved in numerous physiological functions, has been associated with adverse outcomes such as cognitive decline and falls, particularly when multiple anticholinergic medicines are used concurrently (termed anticholinergic burden) [ 25 , 26 ]. GPs, clinical pharmacologists, and pharmacists described the importance of reviewing and deprescribing anticholinergic medicines where possible. However, the process of calculating anticholinergic burden (ACB) in frail, older adults is time consuming, primarily due to the absence of automated calculators embedded within the EHR system.

Doctors and pharmacists expressed frustrations around the re-prescribing of anticholinergics after deprescribing them. They attributed the persistence of high ACB to limitations in prescribing guidelines and a scarcity of alternative options to replace anticholinergic drugs. These challenges highlighted the need for tools within EHR systems to facilitate efficient assessment of ACB, alongside a broader exploration of prescribing guidelines and alternatives to enhance deprescribing practices.

“ One of the things that I often see in general practice is that there’s lots of anticholinergics, usually amitriptyline because it’s kind of given out for other reasons for what it’s licensed for. So, sleep is probably the most common thing that I see it used for, or avoiding long term opioids in chronic arthritic pain, and often that’s because we have other options for them but we’re not allowed to prescribe them. So, melatonin is probably the most common thing that we could put them on which has a lot better safety profile, but we are just completely discouraged from prescribing it. And likewise access to other interventions that would help arthritic pain rather than putting them on NSAIDS which obviously carry risk or opioids which aren’t overly effective outside the acute pain window. It’s often the lack of other stuff that raises all of the anticholinergic burden. ” (Participant 1, GP FG1)

Participants welcomed any digital tool that could streamline routine work processes, including information retrieval, automated dose calculations, and assessing the risk of developing diseases to optimise medicines during a SMR in a patient-centred manner, with the goal of enhancing efficiency in the medication optimisation process.

Medication reviews by HCPs can take significant preparation, and are time consuming, primarily due to the need to gather and understand patient information and to develop an understanding of a patient’s medical history and social circumstances. In addition, currently, there is no easy way to identify from the EHR which patients are at greatest risk of medication-related harm and those most likely to benefit from an SMR. The EHR systems used in primary care contain enormous volumes of information which becomes particularly challenging and time-consuming to navigate for complex individuals living with multiple long-term conditions and taking many medications. The way that information is organised in the system leads to a large proportion of time spent linking medications to their original indication and examining the patient journey. This time could be better spent discussing shared decisions with the patient. The EHR has not evolved in line with increasing patient complexity. The findings of this report emphasise the need for enhanced functionalities in EHRs to support effective medication management in the context of deprescribing discussions where a nuanced understanding of a patient’s medication history is crucial.

Our study has highlighted the challenges facing those undertaking SMRs in more socioeconomically disadvantaged areas, where people experience multimorbidity (and co-existent polypharmacy) 10–15 years earlier than their affluent peers [ 27 , 28 ]. These populations have complex healthcare needs at a younger age, the care of which falls to the already over-stretched GPs. Areas with greater socioeconomic disadvantage often have lower health literacy, resulting from a combination of lower educational attainment, economic barriers like the need to prioritise food and heating over health seeking, and psychosocial stressors affecting decision-making relating to health [ 29 , 30 ]. Health literacy applies not only to the patient but to the clinician who may also be unaware of the psychosocioeconomic situation of the patient, leading to a communication gap when discussing the risk and benefit of medicines to reach a shared-decision [ 31 – 33 ]. Accordingly, complex conversations involving numeracy calculations of risk may take longer and require repetition, but may also be of less priority for the patient and/or carer than other more immediate life concerns.

As preparation time is repeatedly cited as a barrier to effective SMR, a potential solution that would support SMRs in those with lower health literacy should include any digital intervention that saves on preparation time. This would enable more time for the clinician to engage with the patient and discuss complexities around risk and benefit, which would go some way to addressing the existing health disparity that affects those experiencing socioeconomic disadvantage. For HCPs working in areas of socioeconomic deprivation, lack of HCP capacity alongside patients declining SMR invitations were cited as barriers to undertaking SMRs. Moreover, HCPs described the usefulness of a system to identify availability of different health services in surrounding areas (e.g. weight management service) [ 27 , 28 ]. A recent study co-produced SMR resources to empower patients in their healthcare and support them in making the most out of their SMR. This included producing resources in a number of different languages including audio recorded resources for patients with visual impairment [ 34 , 35 ]. Embedded links to resources for HCPs to provide to patients before and/or after an SMR can be one potential way to utilise digital health and empower patients to reduce inequity in access to healthcare.

Our study also highlighted medication-related challenges such as difficulties managing mental health, specialist and anticholinergic medications. HCPs reported that a lack of alternatives to medication for symptom management hampered their ability to optimise some of the more potentially harmful medication classes such as opioids, anti-depressants, anticholinergics and gabapentinoids. Non-pharmacological alternatives, where appropriate, such as counselling need to be readily and equitably accessible for this approach to be considered a reliable option [ 36 ]. Mental health medication management stood out as a consistent challenge. HCPs in our study, regardless of their professional background, expressed difficulty in monitoring and adjusting psychiatric drugs. There was also a general lack of confidence and skill when it came to monitoring and adjusting antipsychotic medications, with the measurement of success in managing these medications being ambiguous. This is consistent with previous studies that note GPs lack of confidence in managing patients with serious mental health illness [ 12 , 37 ]. One recent study reported that less than half of GP trainees in England and Wales have trained in a mental health setting between 2013 and 2015 [ 38 ]. In addition to the need for HCPs in primary care to become trained to address issues related to psychiatric medicines, EHRs must include basic information about the indication for the prescribed psychiatric medicine and the appropriate mental health team contact details for GPs to be able to address these issues. This would have the potential to enable multidisciplinary coordination of care with mental health patients.

Another challenging group of medicines was those with anticholinergic effects. This drug class was also a recurring issue among GPs, clinical pharmacologists, and pharmacists. HCPs found it time consuming to calculate the ACB in frail, older adults. Although there are several ACB scales available that have been developed and validated, participants stated that automated calculators to calculate ACB are not easily accessible or embedded into EHRs. In addition, there is considerable variability between anticholinergic scales making it difficult to ascertain which scale to use to calculate ACB [ 39 ]. As such, taking the time out to include every medicine a patient is taking to calculate their ACB is time consuming, reducing opportunities for potential deprescribing discussions with patients.

Limitations

This study was conducted in the UK, which provides universal access to healthcare. However, findings from our study may also be applicable internationally to other health systems which operate a universal social insurance model where there is a primary care and secondary care gatekeeping model, including the need for HCP coordination [ 40 , 41 ] or deprescribing challenges [ 42 , 43 ]. This study is part of a larger qualitative study examining both barriers to SMRs and potential digital solutions, including AI-assisted approaches. As such, the HCP participants likely included a number of clinicians with a particular interest in digital-driven solutions in healthcare. We sought to include a wide variety of HCPs from different practice backgrounds in order to mitigate this. In addition, some of the focus groups contained unexpected small numbers of clinicians at one time, owing to the competing demands on clinician time. However, the data collected were rich and contributed significantly to achieving thematic saturation. The insights gained from these discussions were consistent with those from larger groups, reinforcing the validity of our findings.

Conclusions

There are few useful digital tools that can identify patients that would benefit most from an SMR or monitor the effects of medication optimisation when medicines are altered. Our findings showed that significant time is needed to prepare and conduct a SMR, with complex patients sometimes needing multiple appointments to enable a comprehensive review. The DynAIRx project will use findings from this study to address the barriers of conducting an SMR by producing dashboards and visualisations to summarise the patient’s medical journey; develop digital tools to prioritise patients that would benefit most from an SMR; and identify optimal interventions for specific multimorbidity and polypharmacy patient groups.

Supporting information

S1 appendix. topic guides for interviews and focus groups and coreq checklist..

https://doi.org/10.1371/journal.pone.0299770.s001

S2 Appendix. Table containing additional explanatory quotes relating to subthemes.

https://doi.org/10.1371/journal.pone.0299770.s002

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• Published: 22 August 2024

To share or not to share, that is the question: a qualitative study of Chinese astronomers’ perceptions, practices, and hesitations about open data sharing

• Jinya Liu   ORCID: orcid.org/0000-0002-9804-8752 1 ,
• Kunhua Zhao 2 , 3 ,
• Liping Gu 2 , 3 &
• Huichuan Xia   ORCID: orcid.org/0000-0002-0838-7452 1  

Humanities and Social Sciences Communications volume  11 , Article number:  1063 ( 2024 ) Cite this article

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Many astronomers in Western countries may have taken open data sharing (ODS) for granted to enhance astronomical discoveries and productivity. However, how strong such an assumption holds among Chinese astronomers has not been investigated or deliberated extensively. This may hinder international ODS with Chinese astronomers and lead to a misunderstanding of Chinese astronomers’ perceptions and practices of ODS. To fill this gap, we conducted a qualitative study comprising 14 semi-structured interviews and 136 open-ended survey responses with Chinese astronomers to understand their choices and concerns regarding ODS. We found that many Chinese astronomers conducted ODS to promote research outputs and respected it as a tradition. Some Chinese astronomers have advocated for data rights protection and data infrastructure’s further improvement in usability and availability to guarantee their ODS practices. Still, some Chinese astronomers agonized about ODS regarding the validity of oral commitment with international research groups and the choices between international traditions and domestic customs in ODS. We discovered two dimensions in Chinese astronomers’ action strategies and choices of ODS and discussed their descriptions and consequences. We also proposed the implications of our research for enhancing international ODS in future work.

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Citizen scientists—practices, observations, and experience

Perceived benefits of open data are improving but scientists still lack resources, skills, and rewards

A focus groups study on data sharing and research data management

Introduction.

Open data sharing (ODS) emphasizes scientific data’s availability to the public beyond its usability and distribution within academic communities (UNESCO, 2021 ). ODS has become increasingly significant since the Big Data era has engendered a paradigm shift towards data-intensive science (Tolle et al., 2011 ), and ODS has promoted data-intensive science to incorporate all stakeholders, such as researchers, policymakers, and system designers to address data processing and utilization issues collectively (Kurata et al., 2017 ; Zuiderwijk et al., 2024 ). Meanwhile, ODS has improved scientific discovery and productivity since different governments and funding agencies have endorsed ODS and published policies to facilitate it (Lamprecht et al., 2020 ). For example, the UK Research and Innovation (UKRI) issued the “Concordat on open research data” in 2016 to ensure that research data gathered and generated by the UK research community must be openly available to the public (UK Research and Innovation, 2016 ). The Chinese government published a “Scientific Data Management Methods” policy in 2018, requiring government-funded research to share its data with the public (General Office of the State Council of China, 2018 ). Besides such government initiatives, the scientific community has also proposed guiding principles for ODS, such as the “FAIR principles” to facilitate data sharing in respect of Findability, Accessibility, Interoperability, and Reuse (Wilkinson et al., 2016 ).

Astronomy is data-intensive and has long been regarded as a prime model of ODS for other scientific fields. For example, the famous Large Synoptic Survey Telescope (LSST) project has committed to real-time ODS after its start-up in 2025 and has released early survey data since June 2021 (Guy et al., 2023 ). Scholars have conducted a few studies to dig out the good practices of ODS in astronomy and found that ODS has a long tradition in astronomy supported by its well-established knowledge infrastructure and data policies (Zuiderwijk and Spiers, 2019 ; Borgman et al., 2021 ). Still, scholars found that some astronomers were hesitant to conduct ODS due to the high reward expectations (e.g., acknowledgment, institutional yearly evaluation, extra citation) and extra efforts (e.g., additional data description) required in ODS practices (Zuiderwijk and Spiers, 2019 ; Kim and Zhang, 2015 ); some astronomers also raised barriers about the usability and availability of data infrastructure to support ODS practices (Pepe et al., 2014 ).

Despite the ODS tradition in astronomy, researchers’ motivations and barriers to ODS may differ based on their cultural contexts. Most empirical studies of ODS have been conducted in Western and developed countries (Genova, 2018 ). Whether these findings hold in non-Western cultures deserves further exploration. Chinese culture and customs differ from Western ones, which may impose distinctive influences on Chinese people’s perspectives and behaviors. For example, Confucianism often renders Chinese individual researchers stick to collectivism or the societal roles assigned to them (Jin and Peng, 2021 ), which is less common in Western culture or academia to our knowledge. Also, scientific research paradigms have originated from and situated in Western culture for a long time. They call for critical examinations and alternative perspectives at the individual and societal or cultural levels, and ODS has been regarded as an essential lens to deliberate it (Serwadda et al., 2018 ; Bezuidenhout and Chakauya, 2018 ; Zuiderwijk et al., 2024 ).

Besides our concerns about cultural and research paradigm differences, Chinese astronomers’ distinctive characteristics have also motivated us to conduct this study. First, based on our prior experience with some Chinese astronomers, we have observed that Chinese astronomers follow enclosed or independent data-sharing norms that are uncommon to researchers in other disciplines. Their research seems to be more international than domestic. Since a slogan from the Chinese government has influenced many research disciplines (including ours) in China, advocating Chinese scholars to “Write your paper on the motherland” (Wang et al., 2024 ), we wondered how such propaganda would impact Chinese astronomers’ attitudes and behaviors. Second, a recent study has revealed that some Chinese astronomers struggled with ODS because they respected it as a tradition on the one hand and desired to gain career advantages (e.g., more data citations) on the other (Liu J, 2021). This finding contrasts another recent study’s conclusion that Chinese early career researchers (ECRs) (in non-astronomy disciplines) would only welcome ODS if the evaluation system rewarded them (Xu, et al., 2020 ). Hence, we wanted to investigate Chinese astronomers’ motivations and barriers regarding ODS further.

Finally, though ODS has been well-acknowledged internationally, it has not been studied or implemented extensively in most research disciplines in China, with astronomy as a rare exception. Hence, we posited that research about ODS in astronomy might shed light on other research disciplines’ popularization of ODS in China. In addition, previous studies on ODS in China have primarily focused on the Chinese government’s open data policies, infrastructure conditions, and management practices (Zhang, et al., 2022 ; Huang et al., 2021 ). To the best of our knowledge, little attention has been paid to Chinese researchers’ perceptions and practices. Thus, we wanted to conduct an exploratory investigation with Chinese astronomers to fill this gap and foster international ODS and research collaboration in Chinese astronomy and other research disciplines more broadly.

With these motivations in mind, we proposed the following research questions.

How do Chinese astronomers perceive and practice open data sharing?

Why do some Chinese astronomers hesitate over the issue of open data sharing?

To address those research questions, we conducted a qualitative study comprising 14 semi-structured interviews and 136 open-ended survey responses with Chinese astronomers to understand their practices and concerns regarding ODS. We found that many Chinese astronomers conducted ODS to promote research outputs and respected it as a tradition. Some Chinese astronomers have advocated for data rights protection and data infrastructure’s further improvement in usability and availability to guarantee their ODS practices. Still, some Chinese astronomers agonized about ODS regarding the validity of oral commitment with international research groups and the choices between international traditions and domestic customs in ODS. We discovered two dimensions in Chinese astronomers’ action strategies and choices of ODS and discussed these findings and implications. This study makes the following contributions. First, it provides a non-Western viewpoint for global ODS in astronomy and recommendations for advancing global and Chinese ODS policies and practices. Second, it reveals Chinese astronomers’ concerns, motivations, and barriers to conducting ODS. This may inspire domestic government, international research policymakers, and ODS platforms and practitioners to empathize with and support Chinese astronomers. Finally, this study may shed light on implementing ODS in other research disciplines in China, which has not been popular.

Literature review

The background of ods in science.

The open data movement in scientific communities was initiated at the beginning of the 21st century (e.g., Max Planck Society, 2003) (Tu and Shen, 2023 ). ODS, also known as open research data, advocates that the openness of scientific data to the public is imperative to science (UNESCO, 2021 ; Fox et al., 2021 ). Prior research has inquired about researchers’ intrinsic and extrinsic motivations for ODS. Intrinsic motivations include personal background and ethical perspectives. For example, a researcher’s personal background (research experience, gender, position, age, etc.) has been found to affect their ODS preferences, and significant differences have been observed in research experience (Zuiderwijk and Spiers, 2019 ; Digital Science et al., 2024 ). Also, a researcher’s ethical stance influences their ODS practices. Some researchers conduct ODS because they want to benefit the research community and promote reciprocity among data stakeholders, such as data producers, funders, and data users (Lee et al., 2014 ; Ju and Kim, 2019 ). Extrinsic motivations for ODS include incentive policies, data infrastructure, and external pressures from funders, journals, or community rules. Incentive policies, such as the promise of data citation and the rewarding credit from their institutions, effectively enhance ODS (Dorch et al., 2015 ; Popkin, 2019 ). Also, a well-established infrastructure could facilitate ODS by reducing its cost (Kim and Zhang, 2015 ). Moreover, regulations from researchers’ stakeholders (e.g., journals and funders) press their ODS practices as well. One example is developing data policies. Kim and Stanton proposed that journal regulative pressure has significantly positive relationships with ODS behaviors (Kim and Stanton, 2016 ).

Despite the motivations, researchers in ODS still have valid justifications for not conducting such practices (Zuiderwijk et al., 2024 ; Boeckhout et al., 2018 ). Sayogo and Pardo categorized those barriers into (1) technological barriers, (2) social, organizational, and economic barriers, and (3) legal and policy barriers (Sayogo and Pardo, 2013 ). More specifically, at the individual level, Houtkoop et al. found that ODS was uncommon in psychology due to psychologists’ insufficient training and extra workload (Houtkoop et al., 2018 ). Meanwhile, Banks et al. indicated that researchers in organizational research were afraid of exposing the quality of their data (Banks et al., 2022 ). In addition, researchers’ ethical concerns also influence their ODS practices, primarily privacy and fairness issues. Walsh et al. identified the privacy risks related to identity, attribute, and membership disclosure as the main ethical concerns about ODS (Walsh et al., 2018 ). Anane et al. worried that ODS could compromise fairness because some new or busy researchers might lose their data rights during the critical post‐first‐publication period (Anane-Sarpong et al., 2020 ). At the societal level, inadequate data policies have failed to guarantee researchers’ data rights, and property rights are unclear. Enwald et al. proposed that researchers in physics and technology, arts and humanities, social sciences, and health sciences were concerned about legal issues (e.g., confidentiality and intellectual property rights), misuse or misinterpretation of data, and loss of authorship (Enwald et al., 2022 ). Anane et al. found that data ownership was a crucial barrier affecting public health researchers’ willingness to share data openly (Anane-Sarpong et al., 2018 ).

The factors that influence astronomical ODS practices

Astronomy has been a prime example of ODS practices in scientific communities (Koribalski, 2019 ). For example, in gamma-ray astronomy, astronomers have explored how to render high-level data formats and software openly accessible and sharable for the astronomical community (Deil et al., 2017 ). In space-based astronomy, ODS has been an established norm in its research community for a long history (Harris and Baumann, 2015 ). In the interdisciplinary field of astrophysics, evidence has shown that papers with links to data, which also represent an approach of ODS, have a citation advantage over papers that did not link the data (Dorch et al., 2015 ). Additionally, many data archives in astronomy have been openly accessible to the public to increase their reusable value and potential for rediscovery (Rebull, 2022 ).

Prior studies have examined the socio-technical factors fostering ODS. Data policies support ODS implementations, and existing data infrastructure plays an essential role in ODS practices in astronomy (Pasquetto et al., 2016 ; Genova, 2018 ). For example, Reichman et al. attributed astronomy’s long tradition of ODS to its extensive and collaborative infrastructure (e.g., software and data centers) (Reichman et al., 2011 ). In practice, some famous astronomy organizations have built solid data infrastructures to support ODS, such as NASA Astrophysics Data System (ADS) and the International Virtual Observatory Alliance (IVOA) (Kurtz et al., 2004 ; Genova, 2018 ). Astronomy’s integrated knowledge infrastructure spanning decades and countries, encompassing observational data, catalogs, bibliographic records, archives, thesauri, and software, prompts global ODS among astronomers (Borgman et al., 2021 ). Many astronomers have a strong sense of duty to their research communities and the public. Thus, they would accept requests for data to assist colleagues and facilitate new scientific discoveries, which enhances ODS (Stahlman, 2022 ). Besides, astronomers perceived reciprocity influences their ODS practices. They aspire to improve their research outputs’ visibility and contribute to new, innovative, or high-quality research via ODS (Zuiderwijk and Spiers, 2019 ).

Still, some factors may hinder astronomers’ ODS practices. At the individual level, ODS may bring them extra learning load and academic reputation risks. For example, if astronomers perceive challenges in ODS or feel they need to acquire further knowledge, they may be less inclined to engage in such practices (Gray et al., 2011 ). Additionally, astronomers expressed concerns about the possibility of others discovering mistakes in the data (Zuiderwijk and Spiers, 2019 ). Pepe et al. also showed that the difficulty of sharing large data sets and the overreliance on non-robust, non-reproducible mechanisms for sharing data (e.g., via email) were the main hindrances to astronomers’ ODS practices (Pepe et al., 2014 ). At the societal level, an exponential increase in astronomical data volume has led to a continuous enrichment of utilization scenarios. ODS may involve data privacy or national security issues, especially when such data is integrated with other datasets. Thus, Harris and Baumann regarded the primary concern in global ODS as safeguarding national security and establishing appropriate licensing mechanisms (Harris and Baumann, 2015 ).

The development of ODS in China

The Chinese government has recognized ODS as a national strategy in both scientific and public service domains. They issued the “Scientific Data Management Methods” in 2018 and “Opinions on Building a More Perfect System and Mechanism for the Market-oriented Allocation of Factors” in 2022. These policies require that data from government-funded research projects must be shared with the public according to the principle of “openness as the norm and non-openness as the exception” (General Office of the State Council of China, 2018 ; General Office of the State Council of China, 2024 ). The Chinese government applied the “hierarchical management, safety, and control” concept as ODS arrangements to realize a dynamic ordered open research data at the social level (Li et al., 2022 ).

At the institutional level, the Chinese Academy of Sciences (CAS) has been actively promoting infrastructure construction and institutional repositories to support ODS. For example, CAS has affiliated eleven out of twenty national-level data centers that are foundational for ODS in China since 2019. Meanwhile, many Chinese journals have published data policies requesting that researchers append their papers with open-access data. The National Natural Science Foundation of China (NSFC) has funded over 6000 data-intensive research programs, encouraging ODS among them in compliance with the NSFC’s mandate (Zhang et al., 2021 ). Regarding Chinese researchers’ attitudes and practices toward ODS, Zhang et al. have observed that Chinese data policies have shifted from focusing on data management to encompassing both data governance and ODS. This shift has shrunk the gap between Chinese researchers’ positive attitudes toward ODS and their less active ODS behaviors (Zhang et al., 2021 ). Driven by journal policies, Chinese researchers’ ODS behaviors have been encouraged. For example, Li et al. found that more than 90% of the published dataset of ScienceDB is also paper-related data and proposed that the pressure from journals has been the main driving force for researchers to conduct ODS (Li et al., 2022 ). ScienceDB (Science Data Bank) is a general-purpose repository in China that publishes scientific research data from various disciplines (Science Data Bank, 2024 ).

Methodology

We conducted a qualitative study comprising 14 interviews and 136 open-ended survey questions with Chinese astronomers from 12 institutions. Our interview questions were semi-structured. Some were framed from the existing literature, and others were generated during the interviews based on the interviewees’ responses. Our open-ended questions are extended from a recent survey on data management services in Chinese astronomy (Liu, 2021 ). Table 1 depicts the formation of our interview questions that served as the major source of our research data. We acknowledge that the interviewees’ responses could be influenced by questions and context during the interview and tried to avoid such biases with the following strategies. First, although Chinese astronomers were hard to contact and recruit, we did our best to diversify our interview sample. Our interviewed Chinese astronomers included researchers and practitioners in observatories, scholars and Ph.D. students in astronomy at top universities in China, and researchers in astronomical research centers. Second, we conducted our interviews in different contexts, such as on campus, in observatories, at research centers, and over phones. Thus, we tried to de-contextualize our interview questions to reduce potential biases. Finally, our qualitative data and analysis were not only from interviews but also from our previous survey. We used the interview and survey data to corroborate and complement each other.

Data collection and analysis

Our interviews were conducted in person or via WeChat video. They lasted 30–45 min and were recorded and fully transcribed. Our recruitment was challenging and time-consuming due to COVID-19 and the limited number of Chinese astronomers available for the interview. We have obtained their informed consent and have followed strict institutional rules to protect their privacy and data confidentiality. In addition, we conducted a survey using the online platform ‘Survey Star’ and obtained responses from 136 Chinese astronomers. For the scope of this paper, we focus on reporting qualitative data.

We kept our first round of data analysis, including notetaking and transcription, simultaneous with the interview progress. Meanwhile, we have fully transcribed and translated the interview recordings in Chinese into verbatim in English. As for the data analysis part, we employed the thematic analysis technique to extract and analyze themes from the interview transcripts (The interviewees are numbered with the letter P) and open-ended survey responses (The survey responses are numbered with the letter Q). Thematic analysis is well-suited for analyzing interview transcripts and open-ended survey responses (Braun and Clarke, 2006 ). We referenced Braun and Clarke’s recommended phases and stages of the analysis process (Braun and Clarke, 2006 ). First, we read through transcriptions and highlight meaning units. Simultaneously, we conducted coding and identified participants’ accounts, which were presented in the form of notes. Second, we categorized the codes and subsequently attributed them with themes that corresponded to ethical concerns. Third, we verified the themes by having them reviewed by two additional authors to ensure high accuracy in our analysis. Finally, we linked our themes with existing literature to provide a more comprehensive narrative of our findings. Table 2 lists the demographic information of the interviewees.

We referenced Stamm et al.’s work to categorize the career stages of the Chinese astronomers we interviewed (Stamm et al., 2017 ). As shown in Table 2 , Most interviewees fall into the Senior-career stage because they have rich research experiences and resources in ODS.

Three types of Chinese astronomers’ behaviors at different ODS stages

We categorize the Chinese astronomers’ ODS behaviors into three types at different stages of ODS. First, Chinese astronomers mentioned that one type of ODS behavior is making the data publicly available on a popular platform (e.g., Github, NASA ADS, arXiv) or data centers after the proprietary data period has expired. The proprietary data period, or the exclusive data period, refers to the time between researchers first accessing the data and publishing their findings. This period typically ranges from one year to two years in astronomy, which aims to cover a normal and complete astronomical research cycle. P13 explained:

The data is not in our hands. After we use the telescope to complete the observations, the data will be stored in the telescope’s database. During the proprietary period (12 months), only you can view it. After the proprietary data period has passed, anyone can view it. (P13)

She meant that the raw data produced by astronomers were stored by the builders, who were also responsible for making those data visible to the public when the proprietary data period had expired. Zuiderwijk and Spiers’s survey has also revealed that astronomers seldom store raw data due to their inability to build a data center. Consequently, astronomers often do not influence data-sharing decisions directly but only propose data collection ideas (Zuiderwijk and Spiers, 2019 ).

Secondly, Chinese astronomers also regraded sharing the data with research teams or individuals upon their requests during the proprietary data period, which is also feasible. For example, P5, said:

I published one paper using research data whose proprietary period hasn’t expired. If someone emailed me to inquire whether they could obtain the data for “Figure 2” [here P5 referred to an exemplary figure in her previous publication]. I usually send the data to them. It is common [in astronomy] to communicate with the author via email to consult their willingness toward ODS. (P5)

P5 assumed that sharing data privately was allowed and common among astronomers when the proprietary data period had not yet expired. To some extent, P5 also transformed this private approach toward a visible approach by making his processed data public and publishing it on open platforms.

P11 added the reason why astronomers used this private approach:

The data is not immediately made available. There is a proprietary data period of one or two years. Priority is given to the direct contributors to use the data and produce the first batch of scientific results. After the proprietary data period has expired, others were allowed to discover the value of the data jointly…Other astronomers may also be interested in the data during the proprietary data period. After all, during this period, others were unable to conduct observations and produce data. (P11)

P11 explained that during the period when he applied for observation, others could not produce the data by using the same telescope. However, they might still be interested in such data. Thus, he might share their research data privately with other astronomers if he deemed it necessary for the other astronomers’ research.

Finally, besides the open sharing of research data, two other astronomers also introduced the third type of ODS behavior, the open sharing of research software, tools, and codes. P12 explained:

When the project was completed, project funders required all the research data to be submitted to a certain location for public use. We also needed to submit the software, tools, and related codes developed by astronomers. (P12)

According to P12, ODS is not merely about data per se but also its associated processing tools and accompaniment.

Another astronomer, P10, mentioned that astronomers may also share their software openly to enhance their research influence. P10 said:

Astronomers may openly share their programs in theoretical research and data simulation, particularly simulation programs or source files. They create open-source materials related to their articles and then make their software or related models available online. They also require acknowledgment if someone uses them later. Nowadays, many astronomers use this method for ODS. (P10)

Individual factors concerning Chinese astronomers’ motivations for ODS

Ods is a tradition and duty.

Twelve Chinese astronomers also mentioned that ODS was a traditional norm in astronomy, and they have been obeying it since they entered this scientific field. P11 said:

We have known a traditional norm since we started working in this field. That is, every time you apply for telescope observations and obtain data, this data must be made public one year later. Even if you have not completed your research or published a paper by then, the data will still be made public. For us astronomers, ODS is a natural practice and meaningful endeavor. We believe that astronomy is a role model of ODS for other research fields to follow. (P11)

Four Chinese astronomers also introduced the influence of the tradition of ODS on their motivations for ODS. For example, P10 said:

In the past, I have obtained data of my interest from other astronomers by emailing them. Therefore, if someone approaches me for data, I would also be willing to provide it. (P10)

Another two astronomers elaborated that they acknowledge the ODS tradition due to its benefit to both astronomers and telescopes. P1 said:

According to the international convention, to promote the influence of the telescope and enrich its research outputs, the data is released to the public based on different proprietary data periods. Each data release includes not only raw data but also data products generated by technical personnel processing the raw data. (P1)

I do not process raw data; instead, I typically utilize data products generated by telescopes. These data products, which are openly available in the public domain, assist individuals like me who lack technical expertise in processing raw data to conduct scientific research. Thus, we must also acknowledge the telescope’s contribution when publishing our findings. This is the norm in astronomy. (P13)

P1’s and P13’s opinions were common, which elaborated that telescopes have offered astronomers different kinds of data, enhancing their potential research outputs. In return, when researchers utilize the data generated by telescopes, they also contribute to the telescope’s influence and reputation.

It is worth noting that this tradition is also in telescopes’ data policies, which influences Chinese telescopes’ data proprietary periods setting. For example, the Chinese astronomy projects LAMOST and FAST release data policies that mention the proprietary data period following international conventions. As indicated by P6, the international convention typically observes the proprietary data period of six months to one and a half years.

Six Chinese astronomers believed that ODS is an established tradition in astronomy and ought to be respected and enacted as a duty without considering external factors or consequences. For example, P8, mentioned that:

Astronomy is a very pure discipline without economic benefit, and we have the tradition of ODS. Therefore, they state their data source or post a link to their data directly. My willingness to conduct ODS is also influenced by this atmosphere. Besides that, I regard ODS as a basic requirement because data should be tested [via ODS]. (P8)

Another two astronomers considered ODS in astronomy the nature of science, which motivated them to pursue the goal of openness persistently. For example, P11 said:

Astronomy exemplifies a characteristic of being borderless, where there is a strong inclination towards open academic exchange and sharing of resources and tools. Additionally, astronomy is pure due to its non-profit nature. Thus, astronomers have always maintained simplicity, leading to a culture of openness. (P11)

ODS brings beneficial consequences

Still, four Chinese astronomers hoped to improve their research influence and citations through ODS, especially the research to which they had devoted the most effort. For example, P10 said:

Astronomers not only release their data but also the software or code to process it. This is because if other astronomers use my software and code to process the data, they would also cite the papers with my shared software and code. This will increase the influence of my papers and software or code. (P10)

A similar perspective came from our survey responses Q19, Q22, Q34, and Q47, who also perceived that ODS could improve the research impact of their papers and data. For example, Q22 stated:

I have encountered situations where other researchers requested access to my data. One of the reasons I am willing to share data [with them] is to increase my paper citations. (Q22)

Additionally, some Chinese astronomers practiced ODS to replicate and validate their research. For example, Q26 said:

The primary reason I endorse ODS is to replicate my data analysis by peers and enable independent verification of my research outputs. (Q26)

ODS engenders reciprocity and collaboration opportunities

Fourteen Chinese astronomers mentioned that ODS could increase their research outputs and provide possibilities to obtain other astronomers’ data, thereby promoting the prosperity of research outputs in the entire astronomy community. More importantly, they have established a new type of collaborative opportunity through ODS when data are sufficient but resources/capacities to utilize data are limited. For example, P12 expressed that ODS had a positive impact on the research outputs of the scientific community:

An astronomer I respect once stated that initially, they wanted to conceal all research data, but this proved impossible due to the vast amount of data produced by the telescope. As a result, they released all the data from their large-scale projects. The outcome of this ODS behavior rendered explosive growth in research outputs. (P12)

Another two astronomers noted that ODS was essential to cultivate more astronomers to form collaborative efforts to increase research outputs in the scientific community. P6 said:

The data generated by telescopes used to observe transient events have not been subject to the proprietary data period. Once I observe such events, I will encourage other researchers to join in and rapidly identify these unexpected phenomena, facilitating subsequent observations using various telescopes to maximize scientific output as quickly as possible. (P6)

P6 elaborated that astronomers rely on collaborative efforts for special observations, such as discovering new stars, which maximizes the utilization of global telescope resources. This motivation strengthens collaborations among astronomers from different research teams. P14 added:

New events [e.g., new star discoveries] in astronomy often occur in transience. If I do not share information about these events, other astronomers will not know about them. With limited resources, I may be unable to observe them through other telescopes. However, sharing preliminary data about these events can maximize global resources. This allows for a collaborative effort to observe the event using resources from around the world. (P14)

P14 stated that ODS has the potential to appeal to more astronomers to research contributions through their subsequent and collective efforts based on the initial observation. P14’s opinion echoed Reichman et al.’s findings, which revealed that extensive and collaborative infrastructure was the primary driver behind the adoption of ODS (Reichman et al., 2011 ).

Prior research also indicated that limited resources and capacities would increase collaboration among astronomers in astrophysics research (Zuiderwijk and Spiers, 2019 ). A similar opinion also arose from our survey responses Q18, Q30, and Q52. For example, Q30 said:

I am good at processing data instead of writing papers. ODS can allow me to collaborate with someone who is good at writing papers to co-produce the research output. (Q30)

Societal factors concerning Chinese astronomers’ barriers to ODS

The limitations of verbal agreements in international collaboration.

Although most Chinese astronomers endorsed ODS, three were concerned about other astronomers who might have violated their initial commitments to using data for scientific purposes. For example, P7 commented:

I used to have experiences with foreign collaborators who violated their initial commitments, resulting in unpleasant consequences. Specifically, they promised in emails that they would process the data using a different approach from ours. However, they ended up using the same method and perspective as ours. There was not much to be said about it, as it was not illegal or against data policies’ regulations. It is a matter of trust and promises, and all I can do is not share data with them in the future. (P7)

P10 also added that often, the astronomers’ commitment to email correspondence had to rely on their self-discipline to materialize:

If the proprietary data period has not expired and you share the data with others, you have no control over what they do with it except to trust their promise in the email. This situation relies on the self-discipline of astronomers. (P10)

Three astronomers were also concerned about the validity of oral agreements about ODS. They referred to them as “gentlemen’s agreements.” For example, P14 explained:

In principle, data can be shared with others without a signed contract between us but based on the so-called gentleman’s agreement. Thus, some Chinese astronomers may not be willing to make their research data public because they must assume that everyone is a gentleman [to keep their promise], which may not always be the case as there are also scientists who are not accountable due to a highly competitive environment [in science]. (P14)

P14 regarded the “gentlemen’s agreements” as effective only to those who acted in good faith in fulfilling their commitments. They would not impose or presuppose any “ethical” constraints on collaborators. Hence, he noted that some astronomers were unwilling to share data openly within the proprietary data period because they did not trust the other astronomers’ accountability to fulfill their “gentlemen’s agreements.” Besides that, P6 explained the reason that astronomers have broken their commitments. He said:

In astronomy, some data policies have not been effectively constrained because it is impossible to encompass all subsequent data usage and collaboration situations at first…Also, there are many astronomy alliances. If you are not part of our alliance, you are not bound to commitments, which may lead to disputable issues. (P6)

Data is too dear to share immediately

Ten Chinese astronomers considered that the data they obtained possessed unique scientific values that could contribute to their publication priority and prolificity. Given the fact that publication priority, authorship order, and quantity are still the most important and prevalent factors in evaluating a scholar in China, it becomes comprehensible that these astronomers have expressed concerns about the risk of losing the ‘right of first publication’ if they openly share their processed data too soon. For example, P9 confessed:

I am unwilling to conduct ODS primarily because my research findings have not been published yet. I am concerned that ODS might lead to someone else publishing related findings before I do. (P9)

Similar concerns were also expressed in our survey responses Q42, Q46, and Q53. Q53 provided a more detailed explanation:

The individuals or organizations that produce data should have the right to use it first and only make it publicly available after a round of exploration and the publication of relevant research results. If the data is shared openly and completely from the outset, the number of people or organizations willing to invest time and money in obtaining data in the future will decrease since they can use data obtained by others instead of acquiring it by themselves. (Q53)

Another astronomer, P12, held a negative attitude toward ODS at the early stage of research because he was concerned that their data processing capacity was slower than the other research groups once the data was shared with them:

I put a lot of effort into processing data, and if my research findings have not been published but I release my data in three months [some international rules recommend astronomers to open their data as soon as possible], then someone with a more sophisticated data processing software may be able to write and analyze their research paper within a week because they already have the complete workflow prepared. This may upset the sharers who intended to publish a similar finding, as their work has been done so quickly [sooner than the sharer]. (P12)

A similar opinion could be seen in our survey response Q46:

The scientific community should ensure that those who have worked hard to produce the data also have the priority to publish their research findings before the data has been made publicly available. (Q46)

The disparities between the Chinese and foreign research infrastructures

Five Chinese astronomers expressed their concerns about the disparities between the Chinese and foreign research infrastructures. For example, P9 expressed his concern that adhering to international rules in astronomy might contradict the domestic rules in China due to national security and data confidentiality considerations. He said:

International organizations hope our country will lead in ODS, which may sometimes harm our interests. This is especially the case for the data produced through Chinese telescopes, which are published in international academic journals upon the international journal publishers’ requests because this data may involve confidential engineering tasks in Chinese telescopes that are subject to national security purposes. (P9)

Another astronomer, P4, also mentioned that astronomical data may include equipment parameters that may trigger national security concerns. Hence, she has undergone desensitization before conducting ODS:

Astronomical raw data are generated by the equipment directly and are categorized as first-level data [machine-generated data] in the data policies. More importantly, raw astronomical data should be processed before being opened to the public because the raw data may raise [national] security concerns and leakage equipment parameters. (P4)

P4’s concerns about national security are also reflected in China’s national data policies. For example, the Chinese government mandates the “hierarchical management, safety, and control” policy to supervise ODS to balance its order and dynamic (Li et al., 2022 ).

P8 added that Chinese astronomers are sometimes limited by national rules and domestic data infrastructure usability and accessibility. P8 said:

In some Chinese astronomical projects, only certain frequency bands are internationally permitted, and the first to occupy them claims ownership. Moreover, our data storage and ODS are limited by technical difficulties. We don’t have ODS platforms like NASA ADS. Even if there are, these platforms are currently not as recognized internationally as those abroad. Therefore, when astronomers publish papers or data, they default to submitting them to international platforms. (P8)

Societal factors concerning Chinese astronomers’ hesitations for ODS

The pressure from domestic data policies.

Five Chinese astronomers have mentioned that ODS is subject to the requirements of domestic data policies. Thus, they sense the pressure to conduct ODS. For example, P6 indicated that many astronomy projects in China were government-funded and required data sharing and submission conforming to government regulations as the priority.

Chinese telescopes are primarily funded by the government, as researchers have not yet had the ability to build a telescope on their own. The entire Chinese population is considered one collective, while those non-Chinese are another. The Chinese government aims to promote ODS to data generated by projects funded by public funds. If researchers have not submitted research data to the government-delegated data center, it could potentially impact their subsequent research project approval. By contrast, some foreign telescopes are built by private institutions and may not have the option for ODS. (P6).

Another astronomer, P3, proposed that Chinese mandatory data policies prompt the ODS scale. However, complicated troubles remained.

Our data policies are mandatory, especially for projects funded by national grants. That is, if you don’t conduct ODS, your projects may not be accepted. The volume of ODS is rising consequently. However, the issues related to ODS still need to improve, such as the Chinese astronomers’ initiative willing to ODS is weak, and [sometimes] their open data cannot be reused. There is a need further to investigate Chinese researchers’ [ODS] behaviors, particularly to find the stimulations for them to conduct ODS proactively. (P3)

Besides, three Chinese astronomers shared that the traditional funding source in astronomy also motivated their ODS. P8 explained:

In China, astronomical data [from national telescopes] is mostly institutional and collective. One can apply to use a telescope at a particular institution to obtain astronomical data. The applications may receive different priorities, but the data is not privately owned. (P8)

P8 meant that Chinese astronomers relied on large telescope projects funded by the government. Consequently, the ownership of their observed data belongs to the collective astronomical community in China rather than individual astronomers or research teams.

The language prerequisite in astronomy

Three astronomers have also introduced the issue of a language prerequisite in scientific communication. For example, P12 explained:

[Modern] astronomy predominantly originated from developed nations. Consequently, our conferences, data, and textbooks are primarily in English. However, this can be a barrier for young Chinese astronomers who are not proficient in English. At least among the researchers around me, everyone contends that English is a necessary prerequisite for entering the field of astronomy. That is to say, the entry barrier for astronomy is very high. I termed it “aristocratic science” because it is difficult to conduct astronomical research without good equipment, proficient English, or substantial funding. (P12)

Another astronomer, P9, dismissed astronomical journals in Chinese because these journals would not be acknowledged in the international astronomy community:

I believe English is a strict prerequisite in astronomy. If your English is poor, you may be restricted from engaging in ODS communication. I support [the slogan] publishing in Chinese to enhance Chinese scholars’ international influence, but most astronomical research originates from the West and is primarily dominated by Western institutions. Besides that, domestic journals are not valuable enough for academic evaluation or promotion due to their low influence factor. (P9)

Finally, P13 added that if Chinese astronomers always use English in ODS, it might potentially clash with the academic discourse system in China.

Some people may wonder why, as Chinese researchers, we need to use English to communicate our work. From my personal perspective, of course, I fully support promoting our research discourse system using Chinese as the primary language. However, from a [scientific] communication standpoint, there are times when we need to collaborate with foreign astronomers or improve communication efficiency [in English]. (P13)

The awareness of a competitive environment

Four Chinese astronomers have expressed concerns about ODS due to the highly competitive scientific community to which they belong. For example, P14 stated:

The field we are currently working in is highly competitive, so we need to consider protecting our team’s efforts. If we release the data, there is a possibility that other researchers using more advanced software tools could publish their findings before us. (P14)

Another astronomer, P12, remarked that this competitive atmosphere varies depending on the research directions. He said:

Competition is inevitable but varies across research areas. I engaged in two research areas. One is characterized by intense competition, but the other is more friendly. The highly competitive research area has many researchers pursuing high-quality data and tackling cutting-edge topics. Sometimes, competing with those who publish first or faster becomes necessary. In addition, one kind of “Nei Juan” may exist, which is competing to see who can open data faster. Because the faster your proposal is promised, the sooner your observation project will be approved. (P12)

“Nei Juan” (a.k.a. involution) manifests a fierce but often unfruitful competition to catch up with colleagues, peers, and generations (Li, 2021 ). P12 acknowledged the competitive environment that would push him to publish first or faster but also regarded “Nei Juan” as not always bad for ODS. Still, P9 considered that the “Nei Juan” issue may arise because Chinese astronomers want to catch up with the international astronomical development phase.

Generally speaking, astronomy is relatively less “Nei Juan” compared to other disciplines. However, its rapid development has begun to become more intense. Particularly, Chinese astronomy is in a phase of catching up, characterized by a collaborative yet competitive atmosphere with the international community. Our national astronomical teams, as a collective, are exerting great efforts to excel in some major projects compared to their foreign counterparts, engaging in strenuous research endeavors. (P9)

However, another astronomer, P11, regarded that ODS meant not “the sooner, the better.” P11 argued:

Some data may have been obtained through instrument testing, and its quality is not particularly high, resulting in lower reliability. If it is made openly accessible immediately, users may not obtain accurate results. Besides, the raw data may contain variances or noises originating from different instruments, requiring standardized processing through software to transform it into [reliable] data products. Only then can scientific users and the public truly benefit from this data. (P11)

The interpretation of Chinese astronomers’ ODS motivations and behaviors

Chinese astronomers’ motivations and behaviors in ODS can be interpreted threefold. First, a few Chinese astronomers’ obedience to ODS is traditional. They value the tradition of ODS in astronomy and contend that it should be respected and obeyed as an intrinsic duty (Heuritsch, 2023 ). Also, they acknowledge the value of astronomical ODS practices for scientific research and the whole scientific community, which makes them devote themselves to such practices (e.g., P8, P12). Hence, for them, extrinsic principles (e.g., FAIR), policies (e.g., those from the Chinese government), or individual research outputs do not determine their ODS decisions and behaviors. As P11 said, he had learned and obeyed this tradition since he entered the field of astronomy. This finding in China corroborates Stahlman’s prior research, indicating that astronomers have a strong sense of duty to their research communities and the public (Stahlman, 2022 ). Still, we found it impressive because these Chinese astronomers adhere to ODS traditions, dismissing the government slogan “Write your paper on the motherland,” which is rare in other research disciplines (including ours) in China.

Second, many Chinese astronomers would evaluate the consequences of ODS. One evaluation lens is self-interest. For example, several Chinese astronomers (e.g., P6, P12) have pointed out that ODS can potentially increase individual research outputs and their academic reputation, which motivates them to do it. It is noteworthy that some Chinese astronomers increase research outputs through ODS, both in terms of their personal contributions and for the entire astronomy community. Their evaluation priority is their own data/paper citation over ODS practices. Another evaluation lens is reciprocity. Some Chinese astronomers (e.g., P1, P10) perceive that the data sharer and user roles in ODS among astronomers can be exchanged. An open data sharer can become a user, and vice versa, in different research projects and times. As P10 mentioned, many Chinese astronomers have received the benefits of ODS from other astronomers when they lacked data or resources. As a result, they aspire to contribute to the community by providing opportunities and resources for fellow astronomers who face challenges similar to those they did previously. Thus, they adopt ODS in a respectful manner, hoping to receive the same treatment in the future. Abele-Brehm et al.’s study has revealed that researchers tended to conduct ODS out of reward promises (Abele-Brehm et al., 2019 ). Our findings complement it by differentiating self-interest-oriented and reciprocity-oriented rewards from ODS.

Third, some Chinese astronomers’ choice of ODS can be interpreted as contractual. Without ODS, they cannot receive government funding or get their research proposal accepted, which may impede their research progress and contribution. This finding corroborates Zuiderwijk and Spiers’ research, highlighting the significance of resource constraints and individual expectations benefits, which they could get extra citation or potential collaboration opportunities as essential motivators for ODS in astronomy (Zuiderwijk and Spiers, 2019 ). Furthermore, the development of modern astronomy in China is relatively retarded compared to the U.S. or European counterparts. The Chinese government sponsors most astronomical projects with public funding, hoping to enhance Chinese astronomy through centralized power and resources. For example, in 2018, the Chinese government implemented a scientific data management policy mandating the sharing of research data generated by public funding (General Office of the State Council of China, 2018 ). Thus, Chinese astronomers in contract with government-funded telescopes must enact ODS.

The societal barriers to Chinese astronomers’ ODS practices

We identified a few societal barriers to Chinese astronomers’ ODS practices. First, insufficient data rights protection during ODS may hinder Chinese astronomers’ enthusiasm or trust in conducting ODS. For example, P6 has raised the concern that some astronomical data policies are typically formulated by scientific alliances and only bind members within project teams. Thus, astronomers who do not belong to these alliances do not need to obey these policies. Moreover, P10 and P14 both complained that though they had contributed much data, time, and effort, some global ODS practices relied on verbal agreements, which often lacked enforcement and easily compromised their data rights in an international project. This insufficient protection of data rights may give rise to conflicts of interest among collaborating parties, discouraging subsequent data-sharing practices among Chinese astronomers.

Second, a data infrastructure that is weak in its usability and accessibility may deter some Chinese astronomers from choosing ODS. As P8 remarked, Chinese open research data infrastructures have not been well developed regarding data usability and accessibility, which pushes domestic astronomers to publish data via foreign open research platforms. This concern partly reflects the reality of the underdevelopment of data infrastructure in China, indicating that most of China’s domestic research data repositories have yet to establish licenses, privacy, and copyright guidelines. (Li et al., 2022 ).

Additionally, we found that a highly competitive environment could potentially trigger “Nei Juan” related to competing for publication priority, which could also affect Chinese astronomers’ ODS attitudes and behaviors. Specifically, the increasing emphasis on academic performance has led many Chinese researchers into a “weird circle” of self-imposed pressure to publish papers continuously. This phenomenon is exacerbated by the tenure system in top Chinese universities, which has significantly shaped researchers’ academic work and day-to-day practices (Xu and Poole, 2023 ). Thus, within the intensely competitive scientific landscape and the dominant evaluation system for paper publications, Chinese astronomers may potentially prioritize rapid paper publication over ODS because when scientific resources and academic promotions are scarce, data is invaluable to a researcher. As implied in P14’s quote, some Chinese astronomers may delay or opt out of ODS unless their data rights and research benefits can be ensured.

Two dimensions in the action strategies in Chinese astronomers’ choices for ODS

Apart from the individual and societal factors that motivate or deter Chinese astronomers’ OBS behaviors, we have identified two dimensions in the action strategies that influence their choice of ODS. These two dimensions are presented and interpreted in Table 3 .

First, some Chinese astronomers hesitated to ODS because they had to choose between domestic customs and international traditions in astronomy, which might influence or even determine some Chinese astronomers’ behaviors concerning ODS. For example, several Chinese astronomers (e.g., P11, P13) prioritized compliance with domestic policies over international ones in determining where and how to implement ODS (Zhang et al., 2023). Besides, as explained by P4, almost all Chinese astronomers receive national funding, which would influence their ODS behaviors due to national funding agencies’ requirements for project commitment and applications. China’s “dual track” approach emphasizing data openness and national security simultaneously requires researchers to obey the “Openness as the normal and non-openness as the exception” principle (Li et al., 2022 ). Meanwhile, open data governance and open data movement have gradually impacted government policies as various national security and personal privacy issues are emerging (Arzberger et al., 2004 ). Despite this, ODS policies or concerns about national security and personal privacy may not be suitable for astronomy because astronomy rarely involves security and privacy issues (as highlighted by P9 and P12). As the discrepancy between domestic and international policy environments widens, choosing different norms may pressure Chinese astronomers’ ODS behaviors.

Second, we found some ethical problems related to ODS from the language prerequisite or preference in Chinese astronomy. As mentioned by P12, language has become an entrance bar in Chinese astronomy because astronomy is sort of “aristocratic science” in the sense that English proficiency is a prerequisite for anyone or any institution that wants to participate in astronomy research and practices seriously. Consequently, there is no comparable citizen science project in China to Galaxy Zoo or Zooniverse in the U.S., and local or private colleges in China cannot afford to establish astronomy as a scientific discipline in their institutions because many people in Chinese citizen science projects or below-the-top institutions are not proficient in English. Related to it, as mentioned by P9, domestic journals about astronomy in China are unanimously regarded as inferior and not valuable enough for academic evaluation or promotion. This phenomenon in Chinese astronomy is distinctive from the other research disciplines in China, where domestic journals are not “biased” based on publication language.

Third, domestic astronomy projects obeying international propriety data period policies may exert extra pressure or restraint on Chinese astronomers to conduct ODS. For example, the LAMOST and FAST projects in China follow international conventions in setting their propriety data period and ODS policies in English. As a result, Chinese astronomers who are poor in English would confront logistic hindrances in harnessing these domestic astronomy projects to share their data, ideas, and publications in Chinese. If they want to implement international ODS via LAMOST or FAST, they must spend extra time, effort, or funding translating their data and ideas into English, which may affect their time and resource allocation in the other research activities within the proprietary data period, such as ODS. Hence, we surmise that this language obstacle for some Chinese astronomers could demotivate or discourage them from ODS.

Fourth, some Chinese astronomers may choose between personal development and scientific advancement regarding ODS. First, it may be due to the adverse effects of the Chinese academic promotion system on some astronomers. In China, universities and research institutions typically use publication lists to evaluate academic performance and promotion (Cyranoski, 2018 ). As P14 mentioned, competition for research publication has been growing in some areas of astronomy (e.g., burst source). Some Chinese astronomers may withhold ODS to prioritize their data rights and timely publication. It may also be interpreted by a prevalent phenomenon in the Chinese academy nowadays called “Nei Juan.” Consequently, some Chinese scholars, including astronomers, are pushed to be competitive or “selfish” to increase their research publications, citation metrics, funding opportunities, and data rights. Prior works have found that researchers’ data-sharing willingness tends to be low when perceived competition is high (Acciai et al., 2023 ; Thursby et al., 2018 ), and researchers’ intrinsic motivation gradually weakens when researchers’ organizations implement accountability measures (such as contract signing) and increasingly pursue performance-oriented academic research (Gu and Levin, 2021 ). These findings may also explain some Chinese astronomers’ hesitation about ODS.

Last but not least, astronomy is highly international, and ODS can encourage collaboration among astronomers from different countries. Nevertheless, as mentioned by P7, some collaborators may compromise their promises for data use, which disincentivizes data sharers’ willingness for continuous ODS. Astronomers, through the joint observations of multiple telescopes, can collectively identify the underlying reasons behind astronomical phenomena and thereby promote scientific advancement. However, with the impact of “Nei Juan” and the limitations of verbal commitments, some Chinese astronomers may find it challenging to choose between ODS and prioritizing their academic interests.

Conclusion and implications for future research

Many astronomers in Western countries may have taken ODS for granted to enhance astronomical discoveries and productivity. However, how strong such an assumption holds among Chinese astronomers has not been investigated or deliberated extensively. This may hinder international ODS with Chinese astronomers and lead to a misunderstanding of Chinese astronomers’ perceptions and practices of ODS. Thus, in this paper, we reported our findings from 14 semi-structured interviews and 136 open-ended survey responses with Chinese astronomers about their motivations and hesitations regarding ODS. Our study found that many Chinese astronomers regarded ODS as an international and established duty to obey or reciprocity to harness. However, some Chinese astronomers would also agonize about ODS for data rights concerns, usable and accessible data infrastructure preferences, and “Nei Juan” or academic promotion pressures. Synthesizing these findings, we summarize them as Chinese astronomers’ concerns and choices between domestic customs and international traditions in ODS. Despite the findings, our research has several limitations. First, we still need more data to test and generalize our findings about ODS to Chinese scholars in other disciplines. Second, we have not conducted a comparative analysis of perceptions, concerns, and behavioral differences among astronomers in other countries. In the future, we intend to address this gap by conducting a global study to provide a more comprehensive understanding of ODS in science.

Our research has several implications for future work. First, we advocate for empathy and compromise between domestic customs and international traditions in Chinese astronomy. Undoubtedly, developed and English-speaking countries have been dominant in science and research paradigms for a long time. On the positive side, such dominance has established various traditions, such as ODS in astronomy, which are respected and obeyed by many scholars worldwide, such as many astronomers in China. On the negative side, such long-standing scientific dominance may trigger a developing country’s domestic countermeasures or competing policies, which can agonize some domestic researchers and impede global ODS. For example, as we have revealed, some Chinese astronomers had regarded astronomy as an “aristocratic science” and screened out Chinese astronomers or citizen science participants who were not proficient in English. Future research can investigate further the power dynamics between international traditions and domestic customs in other cultures or research disciplines beyond ODS in astronomy.

Second, we suggest that the international astronomy community publish more inclusive ODS rules that consider the societal contexts of researchers from different countries with different cultural or language backgrounds. Efforts should be made to minimize the reinforcement of one’s dominant position in scientific research through ODS, and to develop more inclusive, sustainable, and equitable rules that appeal to more advantaged countries to join. This may be achieved by providing different languages of ODS platforms, translation assistance to draft collaboration agreements, and multiple options for international collaboration and communication among astronomers from different countries. In this regard, the CARE (Collective benefits, Authority to control, Responsibility, and Ethics) principles serve as a good example (Global Indigenous Data Alliance, 2019 ). Also, we propose that the Chinese government, academic institutions, and funding agencies be more globally leading and open-minded to stimulate ODS, not merely within the border but endeavor to become a global leader or at least an essential stakeholder to promote knowledge sharing and scientific collaboration.

Third, our research findings indicate that individual ethical perspectives among astronomers play a significant role in guiding their ODS practices. To start, reciprocity effectively enhances ODS regardless of the established or domestic research policies. Thus, we suggest that policymakers in China consider emphasizing more on the reciprocity benefits and build a collaborative effort across the scientific community. As the qualitative data from our findings revealed, collaboration benefits from ODS are highly motivating for Chinese astronomers. Still, we have identified concerns among Chinese astronomers. For instance, they have highlighted concerns about the limitations of verbal commitments for ODS within the proprietary data period, potentially engendering “free-riders” in research. Further, we noticed that some Chinese astronomers conduct ODS based on their respect for this tradition and obey it as their duty without considering external factors such as individual interests or community benefits. We posit that this ethical perspective is aligned with deontology. Therefore, we suggest that stakeholders of ODS, such as the scientific community, research institutions and organizations, and ODS platform developers, could propose specific norms or mottos regarding the ODS tradition in astronomy to stimulate astronomers’ voluntary sense of duty to conduct it.

Finally, since we found that some astronomers conducted ODS primarily for self-interests in academia, efforts should be made to ensure that the rights of researchers in astronomy are protected and that they do not bear any risks caused by others (e.g., data misuse, verbal breach of contract). Future research can administer surveys or experiments to explore how significantly these individual factors impact astronomers’ ODS behaviors.

Data availability

The complete translated and transcribed data from our study is available at Peking University Open Research Data ( https://doi.org/10.18170/DVN/JLJGPF ).

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The authors acknowledge the support of the Beijing Municipal Social Science Foundation under Grant [No. 22ZXC008].

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Liu, J., Zhao, K., Gu, L. et al. To share or not to share, that is the question: a qualitative study of Chinese astronomers’ perceptions, practices, and hesitations about open data sharing. Humanit Soc Sci Commun 11 , 1063 (2024). https://doi.org/10.1057/s41599-024-03570-9

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• Published: 02 September 2024

“I am there just to get on with it”: a qualitative study on the labour of the patient and public involvement workforce

• Stan Papoulias   ORCID: orcid.org/0000-0002-7891-0923 1 &
• Louca-Mai Brady 2  

Health Research Policy and Systems volume  22 , Article number:  118 ( 2024 ) Cite this article

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Workers tasked with specific responsibilities around patient and public involvement (PPI) are now routinely part of the organizational landscape for applied health research in the United Kingdom. Even as the National Institute for Health and Care Research (NIHR) has had a pioneering role in developing a robust PPI infrastructure for publicly funded health research in the United Kingdom, considerable barriers remain to embedding substantive and sustainable public input in the design and delivery of research. Notably, researchers and clinicians report a tension between funders’ orientation towards deliverables and the resources and labour required to embed public involvement in research. These and other tensions require further investigation.

This was a qualitative study with participatory elements. Using purposive and snowball sampling and attending to regional and institutional diversity, we conducted 21 semi-structured interviews with individuals holding NIHR-funded formal PPI roles across England. Interviews were analysed through reflexive thematic analysis with coding and framing presented and adjusted through two workshops with study participants.

We generated five overarching themes which signal a growing tension between expectations put on staff in PPI roles and the structural limitations of these roles: (i) the instability of support; (ii) the production of invisible labour; (iii) PPI work as more than a job; (iv) accountability without control; and (v) delivering change without changing.

Conclusions

The NIHR PPI workforce has enabled considerable progress in embedding patient and public input in research activities. However, the role has led not to a resolution of the tension between performance management priorities and the labour of PPI, but rather to its displacement and – potentially – its intensification. We suggest that the expectation to “deliver” PPI hinges on a paradoxical demand to deliver a transformational intervention that is fundamentally divorced from any labour of transformation. We conclude that ongoing efforts to transform health research ecologies so as to better respond to the needs of patients will need to grapple with the force and consequences of this paradoxical demand.

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Introduction – the labour of PPI

The inclusion of patients, service users and members of the public in the design, delivery and governance of health research is increasingly embedded in policy internationally, as partnerships with the beneficiaries of health research are seen to increase its relevance, acceptability and implementability. In this context, a growing number of studies have sought to evaluate the impact of public participation on research, including identifying the barriers and facilitators of good practice [ 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 ]. Some of this inquiry has centred on power, control and agency. Attention has been drawn, for example, to the scarcity of user or community-led research and to the low status of experiential knowledge in the hierarchies of knowledge production guiding evidence-based medicine [ 9 ]. Such hierarchies, authors have argued, constrain the legitimacy that the experiential knowledge of patients can achieve within academic-led research [ 10 ], may block the possibility of equitable partnerships such as those envisioned in co-production [ 11 ] and may function as a pull back against more participatory or emancipatory models of research [ 12 , 13 , 14 ]. In this way, patient and public inclusion in research may become less likely to aim towards inclusion of public and patient-led priorities, acting instead as kind of a “handmaiden” to research, servicing and validating institutionally pre-defined research goals [ 15 , 16 , 17 ].

Research on how public participation-related activities function as a form of labour within a research ecosystem, however, is scarce [ 18 ]. In this paper, we examine the labour of embedding such participation, with the aim of understanding how such labour fits within the regimes of performance management underpinning current research systems. We argue that considering this “fit” is crucial for a broader understanding of the implementation of public participation and therefore its potential impact on research delivery. To this end, we present findings from a UK study of the labour of an emerging professional cadre: “patient and public involvement” leads, managers and co-ordinators (henceforth PPI, the term routinely used for public participation in the United Kingdom). We concentrate specifically on staff working on research partnerships and centres funded by the National Institute for Health and Care Research (NIHR). This focus on the NIHR is motivated by the organization’s status as the centralized research and development arm of the National Health Service (NHS), with an important role in shaping health research systems in the United Kingdom since 2006. NIHR explicitly installed PPI in research as a foundational part of its mission and is currently considered a global leader in the field [ 19 ]. We contend that exploring the labour of this radically under-investigated workforce is crucial for understanding what we see as the shifting tensions – outlined in later sections – that underpin the key policy priority of embedding patients as collaborators in applied health research. To contextualize our study, we first consider how the requirement for PPI in research relates to the overall policy rationale underpinning the organizational mission of the NIHR as the NHS’s research arm, then consider existing research on tensions identified in efforts to embed PPI in a health system governed through regimes of performance management and finally articulate the ways in which dedicated PPI workers’ responsibilities have been developed as a way to address these tensions.

The NIHR as a site of “reformed managerialism”

The NIHR was founded in 2006 with the aim of centralizing and rationalizing NHS research and development activities. Its foundation instantiated the then Labour government’s efforts to strengthen and consolidate health research in the UK while also tackling some of the problems associated with the earlier introduction of new public management (NPM) principles in the governance of public services. NPM had been introduced in the UK public sector by Margaret Thatcher’s government, in line with similar trends in much of the Global North [ 20 ]. The aim was to curb what the Conservatives saw as saw as excesses in both public spending and professional autonomy. NPM consisted in management techniques adapted from the private sector: in the NHS this introduction was formalized via the 1990 National Health Service and Community Care Act, which created an internal market for services, with local authorities purchasing services from local health providers (NHS Trusts) [ 21 ]; top-down management control; an emphasis on cost-efficiency; a focus on targets and outputs over process; an intensification of metrics for performance management; and a positioning of patients and the public as consumers of health services with a right to choose [ 22 , 23 ]. In the context of the NHS, cost-efficiency meant concentrating on services and on research which would have the greatest positive impact on population health while preventing research waste [ 24 ]. By the mid-1990s, however, considerable criticism had been directed towards this model, including concerns that NPM techniques resulted in silo-like operations and public sector fragmentation, which limited the capacity for collaboration between services essential for effective policy. Importantly, there was also a sense that an excessive managerialism had resulted in a disconnection of public services from public and civic aims, that is, from the values, voices and interests of the public [ 25 , 26 ].

In this context, the emergence of the NIHR can be contextualized through the succeeding Labour government’s much publicized reformed managerialism, announced in their 1997 white paper “The New NHS: Modern, Dependable” [ 27 ]. Here, the reworking of NPM towards “network governance” meant that the silo-like effects of competition and marketization were to be attenuated through a turn to cross-sector partnerships and a renewed attention to quality standards and to patients’ voices [ 28 ]. It has been argued, however, that the new emphasis on partnerships did not undermine the dominance of performance management, while the investment in national standards for quality and safety resulted in an intensified metricization, with the result that this reform may have been more apparent than real, amounting to “NPM with a human face” [ 29 , 30 , 31 ]. Indeed, the NIHR can be seen as an exemplary instantiation of this model: as a centralized commissioner of research for the NHS, the NIHR put in place reporting mechanisms and performance indicators to ensure transparent and cost-efficient use of funds, with outputs and impact measured, managed and ranked [ 24 ]. At the same time, the founding document of the NIHR, Best Research for Best Health, articulates the redirection of such market-oriented principles towards a horizon of public good and patient benefit. The document firmly and explicitly positioned patients and the public as both primary beneficiaries of and important partners in the delivery of health research. People (patients) were to be placed “at the centre of a research system that focuses on quality, transparency and value for money” [ 32 ], a mission implemented through the installation of “structures and mechanisms to facilitate increased involvement of patients and the public in all stages of NHS Research & Development” [ 33 ]. This involvement would be supported by the advisory group INVOLVE, a key part of the new centralized health research system. INVOLVE, which had started life in 1996 as Consumers in NHS Research, funded by the Department of Health, testified to the Labour administration’s investment in championing “consumer” involvement in NHS research as a means of increasing research relevance [ 34 ]. The foundation of the NIHR then exemplified the beneficent alignment of NPM with public benefit, represented through the imaginary of a patient-centred NHS, performing accountability to the consumers/taxpayers through embedding PPI in all its activities. In this context, “public involvement” functioned as the lynchpin through which such alignment could be effected.

PPI work and the “logic of deliverables”: a site of tension

Existing research on the challenges of embedding PPI has typically focussed on the experiences of academics tasked with doing so within university research processes. For example, Pollard and Evans, in a 2013 paper, argue that undertaking PPI work in mental health research can be arduous, emotionally taxing and time consuming, and as such, can be in tension with expectations for cost-efficient and streamlined delivery of research outputs [ 35 ]. Similarly, Papoulias and Callard found that the “logic of deliverables” governing research funding can militate against undertaking PPI or even constitute PPI as “out of sync” with research timelines [ 36 ]. While recent years have seen a deepening operationalization of PPI in the NIHR and beyond, there are indications that this process, rather than removing these tensions, may have recast them in a different form. For example, when PPI is itself set up as performance-based obligation, researchers, faced with the requirement to satisfy an increasing number of such obligations, may either engage in “surface-level spectacles” to impress the funder while eschewing the long-term commitment necessary for substantive and ongoing PPI, or altogether refuse to undertake PPI, relegating the responsibility to others [ 37 , 38 ]. Such refusals may then contribute to a sharpening of workplace inequalities: insofar as PPI work is seen as “low priority” for more established academic staff, it can be unevenly distributed within research organizations, with precariously employed junior researchers and women typically assigned PPI responsibilities with the assumption that they possess the “soft skills” necessary for these roles [ 39 ].

Notably, the emergence of a dedicated PPI workforce is intended as a remedy for this tension by providing support, expertise and ways of negotiating the challenges associated with undertaking PPI responsibilities. In the NIHR, this workforce is part of a burgeoning infrastructure for public involvement which includes national standards, training programmes, payment guidelines, reporting frameworks and impact assessments [ 40 , 41 , 42 , 43 , 44 , 45 ]. By 2015, an INVOLVE review of PPI activities during the first 10 years of the NIHR attested to “a frenzy of involvement activity…across the system”, including more than 200 staff in PPI-related roles [ 40 ]. As NIHR expectations regarding PPI have become more extensive, responsibilities of PPI workers have proliferated, with INVOLVE organizing surveys and national workshops to identify their skills and support needs [ 41 , 42 ]. In 2019, the NIHR mandated the inclusion of a “designated PPI lead” in all funding applications, listing an extensive and complex roster of responsibilities. These now included delivery and implementation of long-term institutional strategies and objectives, thus testifying to the assimilation of involvement activities within the roster of “performance-based obligations” within research delivery systems [ 43 ]. Notably however, this formalization of PPI responsibilities is ambiguous: the website states that the role “should be a budgeted and resourced team member” and that they should have “the relevant skills, experience and authority”, but it does not specify whether this should be a researcher with skills in undertaking PPI or indeed someone hired specifically for their skills in PPI, that is, a member of the PPI workforce. Equally, the specifications, skills and support needs, which have been brought together into a distinct role, have yet to crystallize into a distinct career trajectory.

Case studies and evaluations of PPI practice often reference the skills and expertise required in leading and managing PPI. Chief among them are relational and communication skills: PPI workers have been described as “brokers” who mediate and enable learning between research and lay spaces [ 44 , 45 ]; skilled facilitators enabling inclusive practice [ 46 , 47 , 48 ]; “boundary spanners” navigating the complexities of bridging researchers with public contributors and undertaking community engagement through ongoing relational work [ 49 ]. While enumerating the skillset required for PPI work, some of these studies have identified a broader organizational devaluation of PPI workers: Brady and colleagues write of PPI roles as typically underfunded with poor job security, which undermines the continuity necessary for generating trust in PPI work [ 46 ], while Mathie and colleagues report that many PPI workers describe their work as “invisible”, a term which the authors relate to the sociological work on women’s labour (particularly housework and care labour) which is unpaid and rendered invisible insofar as it is naturalized as “care” [ 50 ]. Research on the neighbouring role of public engagement professionals in UK universities, which has been more extensive than that on PPI roles, can be instructive in fleshing out some of these points: public engagement professionals (PEPs) are tasked with mediating between academics and various publics in the service of a publicly accountable university. In a series of papers on the status of PEPs in university workplaces, Watermeyer and colleagues argue that, since public engagement labour is relegated to non-academic forms of expertise which lack recognition, PEPs’ efforts in boundary spanning do not confer prestige. This lack of prestige can, in effect, function as a “boundary block” obstructing PEPs’ work [ 51 , 52 ]. Furthermore, like Mathie and Brady, Watermeyer and colleagues also argue that the relational and facilitative nature of engagement labour constitutes such labour as feminized and devalued, with PEPs also reporting that their work remains invisible to colleagues and institutional audit instruments alike [ 50 , 53 ].

The present study seeks to explore further these suggestions that PPI labour, like that of public engagement professionals, lacks recognition and is constituted as invisible. However, we maintain that there are significant differences between the purpose and moral implications of involvement and engagement activities. PPI constitutes an amplification of the moral underpinnings of engagement policies: while public engagement seeks to showcase the public utility of academic research, public involvement aims to directly contribute to optimizing and personalizing healthcare provision by minimizing research waste, ensuring that treatments and services tap into the needs of patient groups, and delivering the vision of a patient-centred NHS. Therefore, even as PPI work may be peripheral to other auditable research activities, it is nevertheless central to the current rationale for publicly funded research ecosystems: by suturing performance management and efficiency metrics onto a discourse of public benefit, such work constitutes the moral underpinnings of performance management in health research systems. Therefore, an analysis of the labour of the dedicated PPI workforce is crucial for understanding how this suturing of performance management and “public benefit” works over the conjured figures of patients in need of benefit. This issue lies at the heart of our research study.

Our interview study formed the first phase of a multi-method qualitative inquiry into the working practices of NIHR-funded PPI leads. While PPI lead posts are in evidence in most NIHR-funded research, we decided to focus on NIHR infrastructure funding specifically: these are 5-year grants absorbing a major tranche of NIHR funds (over £600 million annually in 2024). They function as “strategic investments” embodying the principles outlined in Best Research for Best Health: they are awarded to research organizations and NHS Trusts for the purposes of developing and consolidating capacious environments for early stage and applied clinical research, including building a research delivery workforce and embedding a regional infrastructure of partnerships with industry, the third sector and patients and communities [ 55 ]. We believe that understanding the experience of the PPI workforce funded by these grants may give better insights into NIHR’s ecosystem and priorities, since they are specifically set up to support the development of sustainable partnerships and embed the translational pipeline into clinical practice.

The study used purposive sampling with snowball elements. In 2020–2021, we mapped all 72 NIHR infrastructure grants, identified the PPI teams working in each of these using publicly available information (found on the NIHR website and the websites and PPI pages of every organization awarded infrastructure grants) and sent out invitation emails to all teams. Where applicable, we also sent invitations to mailing lists of PPI-lead national networks connected to these grants. Inclusion criteria were that potential participants should have oversight roles, and/or be tasked with cross-programme/centre responsibilities, meaning that their facilitative and strategy building roles should cover the entirety of activities funded by one (and sometimes more than one) NIHR infrastructure grant or centres including advisory roles over most or all research projects associated with the centre of grant, and that they had worked in this or a comparable environment for 2 years.

The individuals who showed interest received detailed information sheets. Once they agreed to participate, they were sent a consent form and a convenient interview time was agreed. We conducted 21 semi-structured interviews online, between March and June 2021, lasting 60–90 min. The interview topic guide was developed in part through a review of organizational documents outlining the role and through a consideration of existing research on the labour of PPI within health research environments. It focussed on how PPI workers fit within the organization relationship between the actual work undertaken and the way this work is represented to both the organization and the funder. Interview questions included how participants understand their role; how they fit in the organization; how their actual work relates to the job description; how their work is understood by both colleagues and public contributors; the relationship between the work they undertake and how this is represented in reports to funder and presentations; and what they find challenging about their work. Information about participants’ background and what brought them to their present role was also gathered. Audio files were checked, transcribed and the transcripts fully de-identified. All participants were given the opportunity to check transcripts and withdraw them at any point until December 2021. None withdrew.

We analysed the interviews using reflexive thematic analysis with participatory elements [ 54 , 55 ]. Reflexive thematic analysis emphasizes the interpretative aspects of the analytical process, including the data “collection” process itself, which this approach recognizes as a generative act, where meaning is co-created between interviewer and participant and the discussion may be guided by the participant rather than strictly adhering to the topic guide [ 56 ]. We identified patterns of meaning through sustained and immersive engagement with the data. NVivo 12 was used for coding, while additional notes and memos on the Word documents themselves mitigated the over-fragmentation that might potentially limit NVivo as a tool for qualitative analysis. Once we had developed themes which gave a thorough interpretation of the data, we presented these to participants in two separate workshops to test for credibility and ensure that participants felt ownership of the process [ 57 ].

As the population from which the sample was taken is quite small, with some teams working across different infrastructure grants, confidentiality and anonymity were important concerns for participants. We therefore decided neither to collect nor to present extensive demographic information to preserve confidentiality and avoid deductive disclosure [ 58 ]. Out of our 21 participants 20 were women; there was some diversity in age, ethnicity and heritage, with a significant majority identifying as white (British or other European). Participants had diverse employment histories: many had come from other university or NHS posts, often in communications, programme management or human resources; a significant minority had come from the voluntary sector; and a small minority from the private sector. As there was no accredited qualification in PPI at the time this study was undertaken, participants had all learned their skills on their present or previous jobs. A total of 13 participants were on full-time contracts, although in several cases funding for these posts was finite and fragmented, often coming from different budgets.

In this paper we present five inter-related themes drawing on the conceptual architecture we outlined in the first half of this paper to explore how PPI workers navigate a research ecosystem of interlocking institutional spaces that is governed by “NPM with a human face”, while striving to align patients and the public with the imaginary of the patient-centred NHS that mobilizes the NIHR mission. These five themes are: (i) the instability of support; (ii) the production of invisible labour; (iii) PPI as moral imperative; (iv) accountability without control; and (v) delivering change without changing.

“There to grease the cogs rather than be the cogs”: the instability of “support”

Infrastructure grants act as a hub for large numbers of studies, often in diverse health fields, most of which should, ideally, include PPI activities. Here, dedicated PPI staff typically fulfil a cross-cutting role: they are meant to oversee, provide training and advise on embedding PPI activities across the grant and, in so doing, support researchers in undertaking PPI. On paper, support towards the institution in the form of training, delivering strategy for and evaluating PPI is associated with more senior roles (designated manager or lead) whereas support towards so-called public contributors is the remit of more junior roles (designated co-ordinator or officer) and can include doing outreach, facilitating, attending to access needs and developing payment and compensation procedures. However, these distinctions rarely applied in practice: participants typically reported that their work did not neatly fit into these categories and that they often had to fulfil both roles regardless of their title. Some were the only person in the team specifically tasked with PPI, and so their “lead” or “manager” designation was more symbolic than actual:

I have no person to manage, although sometimes I do get a little bit of admin support, but I don’t have any line management responsibility. It is really about managing my workload, working with people and managing the volunteers that I work with and administrating those groups and supporting them (P11).

P11’s title was manager but, as they essentially worked alone, shuttling between junior and senior role responsibilities, they justified and made sense of their title by reframing their support work with public contributors as “management”. Furthermore, other participants reported that researchers often misunderstood PPI workers’ cross-cutting role and expected them to both advise on and deliver PPI activities themselves, even in the context of multiple projects, thus altogether releasing researchers of such responsibility.

As a PPI lead, it is very difficult to define what your role is in different projects….and tasks … So, for example, I would imagine in [some cases] we are seen as the go-to if they have questions. [..] whereas, in [other cases], it is like, “Well, that’s your job because you’re the PPI lead” […] there is not a real understanding that PPI is everyone’s responsibility and that the theme leads are there to facilitate and to grease the cogs rather than be the cogs (P20).

Furthermore, participants reported that the NIHR requirement for a PPI lead in all funding applications might in fact have facilitated this slippage. As already mentioned, the NIHR requirement does not differentiate between someone hired specifically to undertake PPI and a researcher tasked with PPI activities. The presence of a member of staff with a “PPI lead” title thus meant that PPI responsibilities in individual research studies could continue to accrue on that worker:

The people who have been left with the burden of implementing [the NIHR specified PPI lead role] are almost exclusively people like me, though, because now researchers expect me to allow myself to be listed on their project as the PPI lead, and I actually wrote a document about what they can do for the PPI lead that more or less says, “Please don’t list me as your PPI lead. Please put aside funds to buy a PPI lead and I will train them, because there is only one me; I can’t be the PPI lead for everyone” (P10).

This expectation that core members of staff with responsibilities for PPI would also be able to act as PPI leads for numerous research projects suggests that this role lacks firm organizational co-ordinates and boundaries. Here, the presence of a PPI workforce does not, in fact, constitute an appropriate allocation of PPI labour but rather testifies to a continuing institutional misapprehension of the nature of such labour particularly in terms of its duration, location and value.

Conjuring PPI: the production of invisible labour

Participants consistently emphasized the invisibility of the kinds of labour, both administrative and relational, specific to public involvement as a process, confirming the findings of Mathie and colleagues [ 50 ]. This invisibility took different forms and had different justifications. Some argued that key aspects of their work, which are foundational to involvement, such as the process of relationship building, do not lend themselves to recognition as a performance indicator: “ There is absolutely no measure for that because how long is a piece of string” (P11). In addition, relationship building necessitated a considerably greater time investment than was institutionally acceptable, and this was particularly evident when it came to outreach. Participants who did their work in community spaces told stories of uncomprehending line-managers, or annoyed colleagues who wondered where the PPI worker goes and what they do all day:

There is very little understanding from colleagues about what I do on a day-to-day basis, and it has led to considerable conflict …. I would arrive at the office and then I would be disappearing quite promptly out into the community, because that is where I belong […] So, it is actually quite easy to become an absent person (P3).

Once again, the NIHR requirement for designated PPI leads in funding applications, intended to raise the visibility of PPI work by formalizing it as costed labour, could instead further consolidate its invisibility:

I am constantly shoved onto bids as 2% of my full-time equivalent and I think I worked out for a year that would be about 39 hours a year. For a researcher, popping the statistician down and all these different people on that bid, “Everyone is 2% and we need the money to run the trial, so 2% is fine”. And if I said to them, “Well, what do you think I would do in those 39 hours?” they wouldn’t have a clue, not a clue (P17).

The 2% of a full-time allocation is accorded to the PPI worker because 2–5% is the time typically costed for leadership roles or for roles with a circumscribed remit (e.g. statisticians). However, this allocation, in making PPI workers’ labour visible either as oversight (what project leads do) or as methodological expertise (what statisticians do), ends up producing the wrong kind of visibility: the 39 h mentioned here might make sense when the role mainly involves chairing weekly meetings or delivering statistical models but are in no way sufficient for the intense and ongoing labour of trust-building and alignment between institutions and public contributors in PPI.

Indeed, such costings, by eliding the complexity and duration of involvement, may reinforce expectations that PPI can be simply conjured up at will and delivered on demand:

A researcher will say to us, “I would really like you to help me to find some people with lived experience, run a focus group and then I’ll be away”. To them, that is the half-hour meeting to talk about this request, maybe 10 minutes to draft a tweet and an email to a charity that represents people with that condition […] the reality is it is astronomically more than that, because there is all this hidden back and forth. […] [researchers] expect to be able to hand over their protocol and then I will find them patients and those patients will be … representative and I will be able to talk to all of those patients and … write them up a report and …send it all back and they will be able to be like, “Thanks for the PPI”, and be on their merry way (P13).

What P13 communicates in this story is the researcher’s failure to perceive the difference between PPI work and institutional norms for project delivery: the researcher who asks for “some people with lived experience” is not simply underestimating how long this process will take. Rather, involvement work is perceived as homologous to metricized and institutionally recognizable activities (for example, recruitment to trials or producing project reports) for which there already exist standard procedures. Here, the relational complexity and improvised dynamic of involvement is turned into a deliverable (“the PPI”) that can be produced through following an appropriate procedure. When PPI workers are expected to instantly deliver the right contributors to fit the project needs, PPI labour is essentially black boxed and in its place sits “the PPI”, a kind of magical object seemingly conjured out of nowhere.

Such invisibility, however, may also be purposefully produced by the PPI workers themselves. One participant spoke of this at length, when detailing how they worked behind the scenes to ensure public contributors have input into research documents:

When we get a plain English summary from a researcher, we rewrite them completely. If the advisory group [see] … a really bad plain English summary, they are just going to go, “I don’t understand anything”. I might as well do the translation straight away so that they can actually review something they understand. [Researchers then] think, “Oh, [the public advisory group] are so good at writing” … and I am thinking, “Well, they don’t … write, they review, and they will say to me, ‘Maybe move this up there and that up there, and I don’t understand these’”, … They are great, don’t get me wrong, but they don’t write it. And it is the same with a lot of things. They think that [the group] are the ones that do it when it is actually the team (P7).

Here, the invisibility of the PPI worker’s labour is purposefully wrought to create good will and lubricate collaboration. Several participants said that they chose to engage in such purposeful invisibility because they knew that resources were not available to train researchers in plain writing and public contributors in academic writing. PPI workers, in ghost-writing accessible texts, thus effect a shortcut in the institutional labour required to generate alignment between researchers and public contributors. However, this shortcut comes at a price: in effecting it, PPI workers may collude in conjuring “the PPI” – they may themselves make their own work disappear.

“Not a 9 to 5”: PPI work as more than a job

Most participants reported that overtime working was common for themselves and their teammates, whether they were on a fractional or full-time contract. Overall, participants saw undertaking extra work as a necessary consequence of their commitment towards public contributors, a commitment which made it difficult to turn work down:

Everyone loses if you say no: the public contributors aren’t involved in a meaningful way, the project won’t be as good because it doesn’t have meaningful PPI involvement (P20).

While overwork was a common result of this commitment, some participants described such overwork as the feature that distinguished PPI work from what one commonly understands as a “job”, because, in this case, over-work was seen as freely chosen rather than externally imposed:

It is me pushing myself or wanting to get things done because I started it and I think I would get less done if I worked less and that would bother me, but I don’t think it is a pressure necessarily from [line manager] or [the institution] or anyone to be like, “No, do more” (P13).

Participants presented relationship building not only as the most time-consuming but also the most enjoyable aspect of PPI work. Community engagement was a key site for this and once again participants tended to represent this type of work as freely chosen:

I did most of the work in my free time in the end because you have to go into communities and you spend a lot longer there. […] So, all of that kind of thing I was just doing in my spare time and I didn’t really notice at the time because I really enjoyed it (P6).

Thus, time spent in relationship building was constituted as both work and not work. It did not lend itself to metricization via workplace time management and additionally, was not perceived by participants themselves as labour (“I didn’t really notice it at the time”). At the same time, out-of-hours work was rationalized as necessary for inclusivity, set up to enable collaboration with public contributors in so far as these do not have a contractual relationship to the employer:

That is not a 9–5. That is a weekends and holidays sort of job, because our job is to reduce the barriers to involvement and some of those barriers are hours – 9–5 is a barrier for some people (P17).

If working overtime allows PPI workers to reduce barriers and enable collaboration with those who are not employed by the institution, that same overtime work also serves to conceal the contractual nature of the PPI workers’ own labour, which now becomes absorbed into the moral requirements of PPI.

“Caught in the middle”: accountability without control

Participants repeatedly emphasized that their ability to contribute to research delivery was stymied by their lack of control over specific projects and over broader institutional priority setting:

… as a PPI lead we are not full member of staff, we are not responsible for choosing the research topics. We […] can only guide researchers who come to us and tell us what they are doing … we don’t have any power to define what the public involvement looks like in a research project (P6).

Tasked with creating alignments and partnerships between the publics and institutions, participants argued that they did not have the power to make them “stick” because they are not “really” part of the team. However, even as PPI workers lacked the power to cement partnerships, any failure in the partnership could be ascribed to them, perceived as a failure of the PPI worker by both funder and public contributors:

Often you have to hand over responsibility and the researcher [who] can let the panel down and … I feel like I have let the panel member down because … I am the one who said, “Oh yes, this person wants to talk to you”, and I find that really challenging, getting caught in the middle like that (P21).

This pairing of accountability with lack of control became more pronounced in grant applications or reports to the funder:

It is also quite frustrating in the sense that, just because I advise something, it doesn’t necessarily mean that it gets implemented or even included in the final grant. [even so] whatever the feedback is still reflects on us, not necessarily on the people who were making the wider decisions […] As PPI leads, we are still usually the ones that get the blame (P10).

Several participants testified to this double frustration: having to witness their PPI plans being rewritten to fit the constraints (financial, pragmatic) of the funding application, they then often found themselves held accountable if the PPI plans fail to carry favour with the funder. PPI workers then become the site where institutional accountability to both its public partners and to the funder gathers – it is as though, while located outside most decision-making, they nevertheless become the attractors for the institution’s missing accountability, which they experience, in the words of P21, as “ being caught in the middle ” or, as another participant put it, as “ the worry you carry around ” (P16).

“There to just get on with it”: delivering change without changing

Participants recognized that effective collaboration between research institutions and various publics requires fundamental institutional changes. Yet they also argued that while PPI workers are not themselves capable of effecting such change, there is nevertheless considerable institutional pressure to deliver on promises made in grant applications and build PPI strategies on this basis:

So, there is that tension about […] pushing this agenda and encouraging people to do more [….] rather than just accepting the status quo. But actually, the reality is that it is very, very hard to get everybody in [grant name] to change what they do and I can’t make that happen, [senior PPI staff] can’t make that happen, nobody can. The whole systemic issue … But you have got, somehow in the strategy and what you say you are going to do, that tension between aspiration and reality (P4).

This tension between aspiration and reality identified here could not be spelled out in reports for fear of reputational damage. In fact, the expectation to have delivered meaningful PPI, now routinely set up in NIHR applications, could itself militate against such change. For example, a frequently voiced concern was that PPI was being progressively under-resourced:

I feel the bar is getting higher and higher and higher and expectations are higher and we have got no extra resource (P16).

However, annual reports, the mechanism through which the doing of PPI is evidenced, made it difficult to be open about any such under-resourcing.

We will allude to [the lack of resources]. So, we will say things like, “We punch above our weight”, but I am not sure that message gets home to the NIHR very clearly. It is not like the annual report is used to say, “Hey, you’re underfunding this systematically, but here’s all the good stuff we do”, because the annual report is, by essence, a process of saying how great you are, isn’t it? (P3).

The inclusion of PPI as a “deliverable” meant that, in a competitive ecosystem, the pressure is on to report that PPI has always already been delivered. As another participant put it, “ no one is going to report the bad stuff ” (P17). Hence reporting, in setting up PPI as a deliverable, reinforced new zones of invisibility for PPI labour and made it harder to surface any under-resourcing for such labour. Furthermore, such reporting also played down any association between successful PPI and system transformation. Another participant described the resistance they encountered after arguing the organization should move away from “last-minute” PPI:

I think it is really hard when […] these people are essentially paying your pay cheque, to then try to push back on certain things that I don’t think are truly PPI ….[A]s somebody who I felt my role was really to show best practice, for then [to be] seen as this difficult person for raising issues or pushing back rather than just getting things done, is really hard [….] I get the impression, at least within the [organization] … that I am not there to really point out any of the issues. I am there just to get on with it (P14).

This opposition between pointing out the issues and “getting on with it” is telling. It names a contradiction at the heart of PPI labour: here, the very act of pushing back – in this case asking for a commitment to more meaningful and ongoing PPI – can be perceived as going against the PPI worker’s responsibilities, insofar as it delays and undoes team expectations for getting things done, for delivering PPI. Here, then, we find an exemplary instance of the incommensurability between the temporal demands of research and those of meaningful PPI practice.

How do the five themes we have presented help open out how policies around public participation are put into practice—as well as the contradictions that this practice navigates – in health systems organized by the rhetorical suturing of performance management onto public benefit? We have argued that the development of a dedicated workforce represents an attempt to “repair” the tension experienced by researchers between the administrative, facilitative and emotional work of PPI and the kinds of deliverables that the institution requires them to prioritize. We argue that our findings indicate that insofar as PPI workers’ role then becomes one of “delivering” PPI, this tension is reproduced and at times intensified within their work. This is because, as actors in the health research ecosystem, PPI staff are tethered to the very regimes of performance management, which give rise to an institutional misapprehension of the actual labour associated with delivering PPI.

This misapprehension surfaces in the instruments through which the funder costs, measures and generates accountability for PPI – namely, the requirement for a costed PPI lead and the mandatory inclusion of a PPI section in applications and regular reports to funder. The NIHR requirement for a costed PPI lead, intended to legitimize the undertaking of PPI as an integral part of a research team’s responsibilities, may instead continue to position the PPI worker as a site for the research team’s wholesale outsourcing of responsibility for PPI, since this responsibility, while in tension with other institutional priorities, cannot nevertheless be refused by the team. Furthermore, the use of titles such as lead, manager or co-ordinator not only signal an orderly distinction between junior and senior roles, which often does not apply in practice, but also reframes the extra-institutional work of PPI (the forging of relationships and administrative support with public contributors), through the intra-institutional functions of performance/project management. This reframing elides an important difference between the two: public and patient partners, for the most part, do not have a formal contractual relationship with the institution and are not subject to performance management in the way that contracted researchers and healthcare professionals are. Indeed, framing the relationship between PPI workers and public contributors through the language of “management” fundamentally misrecognizes the kinds of relationalities produced in the interactions between PPI workers and public contributors and elides the externality of PPI to the “logic of deliverables” [ 36 ].

The inclusion of a detailed PPI section in grant applications and annual reports to funder further consolidates this misapprehension by also representing public involvement as if it is already enrolled within organizational normative procedures and therefore compels those in receipt of funding to evidence such delivery through annual reports [ 37 ]. This demand puts PPI workers under increasing pressure, since their function is to essentially present PPI objectives as not only achievable but already achieved, thus essentially bracketing out the process of organizational transformation which is a necessary prerequisite to establishing enduring partnerships with patients and the public. This bracketing out is at work in the organizational expectation to “just get on with it”, which structures the labour of delivering PPI in NIHR-funded research. Here, the demand to just get on, to do the work one is paid to do, forecloses the possibility of engaging with the structural obstacles that militate against that work being done. To the extent that both role designation and reporting expectations function to conceal the disjuncture that the establishment of public partnerships represents for regimes of performance management, they generate new invisibilities for PPI workers. These invisibilities radically constrain how such labour can be adequately undertaken, recognized and resourced.

In suggesting that much of the labour of staff in public involvement roles is institutionally invisible, and that organizational structures may obstruct or block their efforts, we concur with the arguments made by Watermeyer, Mathie and colleagues about the position of staff in public engagement and public involvement roles, respectively. However, our account diverges from theirs in our interpretation of how and why this labour is experienced as invisible and how that invisibility could be remedied. Mathie and colleagues in particular attribute this invisibility to a lack of parity and an institutional devaluation of what are perceived as “soft skills” – facilitation and relationship building in particular [ 50 ]. They therefore seek to raise PPI work to visibility by emphasizing the complexity of PPI activities and by calling for a ring-fencing of resources and a development of infrastructures capable of sustaining such work. While we concur that the invisibility of PPI labour is connected to its devaluation within research institutions, we also suggest that, in addition, this invisibility is a symptom of a radical misalignment between regimes of performance management and the establishment of sustainable public partnerships. Establishing such partnerships requires, as a number of researchers have demonstrated [ 18 , 59 , 60 ], considerable institutional transformation, yet those tasked with delivering PPI are not only not in a position to effect such transformation, they are also compelled to conceal its absence.

Recognizing and addressing the misalignment between regimes of performance management and the establishment of sustainable public partnerships becomes particularly pressing given the increasing recognition, in many countries, that public participation in health research and intervention development is an important step to effectively identifying and addressing health inequalities [ 19 , 61 , 62 ]. Calls for widening participation, for the inclusion of under-served populations and for co-designing and co-producing health research, which have been gathering force in the last 20 years, have gained renewed urgency in the wake of the coronavirus disease 2019 (COVID-19) pandemic [ 63 , 64 , 65 , 66 , 67 ]. In the United Kingdom, Best Research for Best Health: The Next Chapter, published by the NIHR in 2021 to define the direction and priorities for NHS Research for the coming decade, exemplifies this urgency. The document asserts that a radical broadening of the scope of PPI (now renamed “public partnerships”) is essential for combatting health inequalities: it explicitly amplifies the ambitions of its 2006 predecessor by setting up as a key objective “close and equitable partnerships with communities and groups, including those who have previously not had a voice in research” [ 68 ]. Here, as in other comparable policy documents, emphasis on extending partnerships to so-called underserved communities rests on the assumption that, to some degree at least, PPI has already become the norm for undertaking research. This assumption, we argue, closes down in advance any engagement with the tensions we have been discussing in this paper, and in so doing risks exacerbating them. The document does recognize that for such inclusive partnerships to be established institutions must “work differently, taking research closer to people [..] and building relationships of trust over time” – though, we would suggest, it is far from clear how ready or able institutions are really to take on what working differently might mean.

Our study engages with and emphasizes this need to “work differently” while also arguing that the demands and expectations set up through regimes of performance management and their “logic of deliverables” are not favourable to an opening of a space in which “working differently” could be explored. In health research systems organized through these regimes, “working differently” is constrained by the application of the very templates, instruments and techniques which constitute and manage “business as usual”. Any ongoing effort to transform health research systems so as better to respond to growing health inequalities, our study implies, needs to combat, both materially and procedurally, the ease with which the disjuncture between embedding public partnerships and normative ways of undertaking research comes to disappear.

Limitations

We focus on the labour of the PPI workforce and their negotiation of performance management regimes, which means that we have not discussed relationships between PPI staff and public contributors nor presented examples of good practice. While these are important domains for study if we are to understand the labour of the PPI workforce, they lie outside the scope of this article. Furthermore, our focus on the UK health research system means that our conclusions may have limited generalizability. However, both the consolidation of NPM principles in public sector institutions and the turn to public and patient participation in the design and delivery of health research are shared developments across countries in the Global North in the last 40 years. Therefore, the tensions we discuss are likely to also manifest in health systems outside the United Kingdom, even as they may take somewhat different forms, given differences in how research and grants are costed, and roles structured. Finally, this project has elements of “insider” research since both authors, while working primarily as researchers, have also had experience of embedding PPI in research studies and programmes. Insider research has specific strengths, which include familiarity with the field and a sense of shared identity with participants which may enhance trust, facilitate disclosure and generate rich data. In common with other insider research endeavours, we have sought to reflexively navigate risks of bias and of interpretative blind spots resulting from over-familiarity with the domain under research [ 69 ] by discussing our findings and interpretations with “non-insider” colleagues while writing up this research.

Our qualitative study is one of the first to investigate how the UK PPI workforce is negotiating the current health research landscape. In doing so, we have focused on the UK’s NIHR since this institution embodied the redirection of performance management regimes towards public benefit by means of public participation. If PPI is set up as both the means of enabling this redirection and an outcome of its success, then the PPI workforce, the professional cadre evolving to support PPI, becomes, we argue, the site where the tensions of attempting this alignment are most keenly experienced.

We suggest that, while such alignment would demand a wholesale transformation of organizational norms, the regimes of performance management underpinning research ecologies may also work to foreclose such transformation, thus hollowing out the promise of patient-centred research policies and systems. Recognizing and attending to this foreclosure is urgent, especially given the current policy emphasis in many countries on broadening the scope, ambition and inclusivity of public participation as a means of increasing the reach, relevance and potential positive impact of health research.

Availability of data and materials

The data that support the findings of this study are available on request from the corresponding author.

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Acknowledgements

S.P. presented earlier versions of this paper at the 8th annual conference of the Centre for Public Engagement Kingston University, December 2021; at the Medical Sociology conference of the British Sociological Association, September 2022; and at the annual Health Services Research UK Conference, July 2023. They are grateful to the audiences of these presentations for their helpful comments. Both authors are also grateful to the generous participants and to the NIHR Applied Research Collaboration Public Involvement Community for their sustaining support and encouragement during this time. S.P. also wishes to thank Felicity Callard for her comments, advice and suggestions throughout this process: this paper would not have been completed without her.

S.P. is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) South London at King’s College Hospital NHS Foundation Trust. The views expressed are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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Contributions

S.P. developed the original idea for this article through earlier collaborations with L.M.B. whose long-term experience as a PPI practitioner has been central to both the project and the article. L.M.B. contributed to conceptualization, wrote the first draft of the background and undertook revisions after the first draft including reconceptualization of results. S.P. contributed to conceptualization, undertook data analysis, wrote the first draft of findings and discussion and revised the first draft in its entirety in consultation with L.M.B. Both authors read and approved the final manuscript.

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Correspondence to Stan Papoulias .

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The study received a favourable opinion from the Psychiatry, Nursing and Midwifery Research Ethics Panel, King’s College London (ref no.: LRS-20/21-21466).

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Papoulias, S., Brady, LM. “I am there just to get on with it”: a qualitative study on the labour of the patient and public involvement workforce. Health Res Policy Sys 22 , 118 (2024). https://doi.org/10.1186/s12961-024-01197-5

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What is Qualitative in Qualitative Research

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What is qualitative research? If we look for a precise definition of qualitative research, and specifically for one that addresses its distinctive feature of being “qualitative,” the literature is meager. In this article we systematically search, identify and analyze a sample of 89 sources using or attempting to define the term “qualitative.” Then, drawing on ideas we find scattered across existing work, and based on Becker’s classic study of marijuana consumption, we formulate and illustrate a definition that tries to capture its core elements. We define qualitative research as an iterative process in which improved understanding to the scientific community is achieved by making new significant distinctions resulting from getting closer to the phenomenon studied. This formulation is developed as a tool to help improve research designs while stressing that a qualitative dimension is present in quantitative work as well. Additionally, it can facilitate teaching, communication between researchers, diminish the gap between qualitative and quantitative researchers, help to address critiques of qualitative methods, and be used as a standard of evaluation of qualitative research.

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If we assume that there is something called qualitative research, what exactly is this qualitative feature? And how could we evaluate qualitative research as good or not? Is it fundamentally different from quantitative research? In practice, most active qualitative researchers working with empirical material intuitively know what is involved in doing qualitative research, yet perhaps surprisingly, a clear definition addressing its key feature is still missing.

To address the question of what is qualitative we turn to the accounts of “qualitative research” in textbooks and also in empirical work. In his classic, explorative, interview study of deviance Howard Becker ( 1963 ) asks ‘How does one become a marijuana user?’ In contrast to pre-dispositional and psychological-individualistic theories of deviant behavior, Becker’s inherently social explanation contends that becoming a user of this substance is the result of a three-phase sequential learning process. First, potential users need to learn how to smoke it properly to produce the “correct” effects. If not, they are likely to stop experimenting with it. Second, they need to discover the effects associated with it; in other words, to get “high,” individuals not only have to experience what the drug does, but also to become aware that those sensations are related to using it. Third, they require learning to savor the feelings related to its consumption – to develop an acquired taste. Becker, who played music himself, gets close to the phenomenon by observing, taking part, and by talking to people consuming the drug: “half of the fifty interviews were conducted with musicians, the other half covered a wide range of people, including laborers, machinists, and people in the professions” (Becker 1963 :56).

Another central aspect derived through the common-to-all-research interplay between induction and deduction (Becker 2017 ), is that during the course of his research Becker adds scientifically meaningful new distinctions in the form of three phases—distinctions, or findings if you will, that strongly affect the course of his research: its focus, the material that he collects, and which eventually impact his findings. Each phase typically unfolds through social interaction, and often with input from experienced users in “a sequence of social experiences during which the person acquires a conception of the meaning of the behavior, and perceptions and judgments of objects and situations, all of which make the activity possible and desirable” (Becker 1963 :235). In this study the increased understanding of smoking dope is a result of a combination of the meaning of the actors, and the conceptual distinctions that Becker introduces based on the views expressed by his respondents. Understanding is the result of research and is due to an iterative process in which data, concepts and evidence are connected with one another (Becker 2017 ).

Indeed, there are many definitions of qualitative research, but if we look for a definition that addresses its distinctive feature of being “qualitative,” the literature across the broad field of social science is meager. The main reason behind this article lies in the paradox, which, to put it bluntly, is that researchers act as if they know what it is, but they cannot formulate a coherent definition. Sociologists and others will of course continue to conduct good studies that show the relevance and value of qualitative research addressing scientific and practical problems in society. However, our paper is grounded in the idea that providing a clear definition will help us improve the work that we do. Among researchers who practice qualitative research there is clearly much knowledge. We suggest that a definition makes this knowledge more explicit. If the first rationale for writing this paper refers to the “internal” aim of improving qualitative research, the second refers to the increased “external” pressure that especially many qualitative researchers feel; pressure that comes both from society as well as from other scientific approaches. There is a strong core in qualitative research, and leading researchers tend to agree on what it is and how it is done. Our critique is not directed at the practice of qualitative research, but we do claim that the type of systematic work we do has not yet been done, and that it is useful to improve the field and its status in relation to quantitative research.

The literature on the “internal” aim of improving, or at least clarifying qualitative research is large, and we do not claim to be the first to notice the vagueness of the term “qualitative” (Strauss and Corbin 1998 ). Also, others have noted that there is no single definition of it (Long and Godfrey 2004 :182), that there are many different views on qualitative research (Denzin and Lincoln 2003 :11; Jovanović 2011 :3), and that more generally, we need to define its meaning (Best 2004 :54). Strauss and Corbin ( 1998 ), for example, as well as Nelson et al. (1992:2 cited in Denzin and Lincoln 2003 :11), and Flick ( 2007 :ix–x), have recognized that the term is problematic: “Actually, the term ‘qualitative research’ is confusing because it can mean different things to different people” (Strauss and Corbin 1998 :10–11). Hammersley has discussed the possibility of addressing the problem, but states that “the task of providing an account of the distinctive features of qualitative research is far from straightforward” ( 2013 :2). This confusion, as he has recently further argued (Hammersley 2018 ), is also salient in relation to ethnography where different philosophical and methodological approaches lead to a lack of agreement about what it means.

Others (e.g. Hammersley 2018 ; Fine and Hancock 2017 ) have also identified the treat to qualitative research that comes from external forces, seen from the point of view of “qualitative research.” This threat can be further divided into that which comes from inside academia, such as the critique voiced by “quantitative research” and outside of academia, including, for example, New Public Management. Hammersley ( 2018 ), zooming in on one type of qualitative research, ethnography, has argued that it is under treat. Similarly to Fine ( 2003 ), and before him Gans ( 1999 ), he writes that ethnography’ has acquired a range of meanings, and comes in many different versions, these often reflecting sharply divergent epistemological orientations. And already more than twenty years ago while reviewing Denzin and Lincoln’ s Handbook of Qualitative Methods Fine argued:

While this increasing centrality [of qualitative research] might lead one to believe that consensual standards have developed, this belief would be misleading. As the methodology becomes more widely accepted, querulous challengers have raised fundamental questions that collectively have undercut the traditional models of how qualitative research is to be fashioned and presented (1995:417).

According to Hammersley, there are today “serious treats to the practice of ethnographic work, on almost any definition” ( 2018 :1). He lists five external treats: (1) that social research must be accountable and able to show its impact on society; (2) the current emphasis on “big data” and the emphasis on quantitative data and evidence; (3) the labor market pressure in academia that leaves less time for fieldwork (see also Fine and Hancock 2017 ); (4) problems of access to fields; and (5) the increased ethical scrutiny of projects, to which ethnography is particularly exposed. Hammersley discusses some more or less insufficient existing definitions of ethnography.

The current situation, as Hammersley and others note—and in relation not only to ethnography but also qualitative research in general, and as our empirical study shows—is not just unsatisfactory, it may even be harmful for the entire field of qualitative research, and does not help social science at large. We suggest that the lack of clarity of qualitative research is a real problem that must be addressed.

Towards a Definition of Qualitative Research

Seen in an historical light, what is today called qualitative, or sometimes ethnographic, interpretative research – or a number of other terms – has more or less always existed. At the time the founders of sociology – Simmel, Weber, Durkheim and, before them, Marx – were writing, and during the era of the Methodenstreit (“dispute about methods”) in which the German historical school emphasized scientific methods (cf. Swedberg 1990 ), we can at least speak of qualitative forerunners.

Perhaps the most extended discussion of what later became known as qualitative methods in a classic work is Bronisław Malinowski’s ( 1922 ) Argonauts in the Western Pacific , although even this study does not explicitly address the meaning of “qualitative.” In Weber’s ([1921–-22] 1978) work we find a tension between scientific explanations that are based on observation and quantification and interpretative research (see also Lazarsfeld and Barton 1982 ).

If we look through major sociology journals like the American Sociological Review , American Journal of Sociology , or Social Forces we will not find the term qualitative sociology before the 1970s. And certainly before then much of what we consider qualitative classics in sociology, like Becker’ study ( 1963 ), had already been produced. Indeed, the Chicago School often combined qualitative and quantitative data within the same study (Fine 1995 ). Our point being that before a disciplinary self-awareness the term quantitative preceded qualitative, and the articulation of the former was a political move to claim scientific status (Denzin and Lincoln 2005 ). In the US the World War II seem to have sparked a critique of sociological work, including “qualitative work,” that did not follow the scientific canon (Rawls 2018 ), which was underpinned by a scientifically oriented and value free philosophy of science. As a result the attempts and practice of integrating qualitative and quantitative sociology at Chicago lost ground to sociology that was more oriented to surveys and quantitative work at Columbia under Merton-Lazarsfeld. The quantitative tradition was also able to present textbooks (Lundberg 1951 ) that facilitated the use this approach and its “methods.” The practices of the qualitative tradition, by and large, remained tacit or was part of the mentoring transferred from the renowned masters to their students.

This glimpse into history leads us back to the lack of a coherent account condensed in a definition of qualitative research. Many of the attempts to define the term do not meet the requirements of a proper definition: A definition should be clear, avoid tautology, demarcate its domain in relation to the environment, and ideally only use words in its definiens that themselves are not in need of definition (Hempel 1966 ). A definition can enhance precision and thus clarity by identifying the core of the phenomenon. Preferably, a definition should be short. The typical definition we have found, however, is an ostensive definition, which indicates what qualitative research is about without informing us about what it actually is :

Qualitative research is multimethod in focus, involving an interpretative, naturalistic approach to its subject matter. This means that qualitative researchers study things in their natural settings, attempting to make sense of, or interpret, phenomena in terms of the meanings people bring to them. Qualitative research involves the studied use and collection of a variety of empirical materials – case study, personal experience, introspective, life story, interview, observational, historical, interactional, and visual texts – that describe routine and problematic moments and meanings in individuals’ lives. (Denzin and Lincoln 2005 :2)

Flick claims that the label “qualitative research” is indeed used as an umbrella for a number of approaches ( 2007 :2–4; 2002 :6), and it is not difficult to identify research fitting this designation. Moreover, whatever it is, it has grown dramatically over the past five decades. In addition, courses have been developed, methods have flourished, arguments about its future have been advanced (for example, Denzin and Lincoln 1994) and criticized (for example, Snow and Morrill 1995 ), and dedicated journals and books have mushroomed. Most social scientists have a clear idea of research and how it differs from journalism, politics and other activities. But the question of what is qualitative in qualitative research is either eluded or eschewed.

We maintain that this lacuna hinders systematic knowledge production based on qualitative research. Paul Lazarsfeld noted the lack of “codification” as early as 1955 when he reviewed 100 qualitative studies in order to offer a codification of the practices (Lazarsfeld and Barton 1982 :239). Since then many texts on “qualitative research” and its methods have been published, including recent attempts (Goertz and Mahoney 2012 ) similar to Lazarsfeld’s. These studies have tried to extract what is qualitative by looking at the large number of empirical “qualitative” studies. Our novel strategy complements these endeavors by taking another approach and looking at the attempts to codify these practices in the form of a definition, as well as to a minor extent take Becker’s study as an exemplar of what qualitative researchers actually do, and what the characteristic of being ‘qualitative’ denotes and implies. We claim that qualitative researchers, if there is such a thing as “qualitative research,” should be able to codify their practices in a condensed, yet general way expressed in language.

Lingering problems of “generalizability” and “how many cases do I need” (Small 2009 ) are blocking advancement – in this line of work qualitative approaches are said to differ considerably from quantitative ones, while some of the former unsuccessfully mimic principles related to the latter (Small 2009 ). Additionally, quantitative researchers sometimes unfairly criticize the first based on their own quality criteria. Scholars like Goertz and Mahoney ( 2012 ) have successfully focused on the different norms and practices beyond what they argue are essentially two different cultures: those working with either qualitative or quantitative methods. Instead, similarly to Becker ( 2017 ) who has recently questioned the usefulness of the distinction between qualitative and quantitative research, we focus on similarities.

The current situation also impedes both students and researchers in focusing their studies and understanding each other’s work (Lazarsfeld and Barton 1982 :239). A third consequence is providing an opening for critiques by scholars operating within different traditions (Valsiner 2000 :101). A fourth issue is that the “implicit use of methods in qualitative research makes the field far less standardized than the quantitative paradigm” (Goertz and Mahoney 2012 :9). Relatedly, the National Science Foundation in the US organized two workshops in 2004 and 2005 to address the scientific foundations of qualitative research involving strategies to improve it and to develop standards of evaluation in qualitative research. However, a specific focus on its distinguishing feature of being “qualitative” while being implicitly acknowledged, was discussed only briefly (for example, Best 2004 ).

In 2014 a theme issue was published in this journal on “Methods, Materials, and Meanings: Designing Cultural Analysis,” discussing central issues in (cultural) qualitative research (Berezin 2014 ; Biernacki 2014 ; Glaeser 2014 ; Lamont and Swidler 2014 ; Spillman 2014). We agree with many of the arguments put forward, such as the risk of methodological tribalism, and that we should not waste energy on debating methods separated from research questions. Nonetheless, a clarification of the relation to what is called “quantitative research” is of outmost importance to avoid misunderstandings and misguided debates between “qualitative” and “quantitative” researchers. Our strategy means that researchers, “qualitative” or “quantitative” they may be, in their actual practice may combine qualitative work and quantitative work.

In this article we accomplish three tasks. First, we systematically survey the literature for meanings of qualitative research by looking at how researchers have defined it. Drawing upon existing knowledge we find that the different meanings and ideas of qualitative research are not yet coherently integrated into one satisfactory definition. Next, we advance our contribution by offering a definition of qualitative research and illustrate its meaning and use partially by expanding on the brief example introduced earlier related to Becker’s work ( 1963 ). We offer a systematic analysis of central themes of what researchers consider to be the core of “qualitative,” regardless of style of work. These themes – which we summarize in terms of four keywords: distinction, process, closeness, improved understanding – constitute part of our literature review, in which each one appears, sometimes with others, but never all in the same definition. They serve as the foundation of our contribution. Our categories are overlapping. Their use is primarily to organize the large amount of definitions we have identified and analyzed, and not necessarily to draw a clear distinction between them. Finally, we continue the elaboration discussed above on the advantages of a clear definition of qualitative research.

In a hermeneutic fashion we propose that there is something meaningful that deserves to be labelled “qualitative research” (Gadamer 1990 ). To approach the question “What is qualitative in qualitative research?” we have surveyed the literature. In conducting our survey we first traced the word’s etymology in dictionaries, encyclopedias, handbooks of the social sciences and of methods and textbooks, mainly in English, which is common to methodology courses. It should be noted that we have zoomed in on sociology and its literature. This discipline has been the site of the largest debate and development of methods that can be called “qualitative,” which suggests that this field should be examined in great detail.

In an ideal situation we should expect that one good definition, or at least some common ideas, would have emerged over the years. This common core of qualitative research should be so accepted that it would appear in at least some textbooks. Since this is not what we found, we decided to pursue an inductive approach to capture maximal variation in the field of qualitative research; we searched in a selection of handbooks, textbooks, book chapters, and books, to which we added the analysis of journal articles. Our sample comprises a total of 89 references.

In practice we focused on the discipline that has had a clear discussion of methods, namely sociology. We also conducted a broad search in the JSTOR database to identify scholarly sociology articles published between 1998 and 2017 in English with a focus on defining or explaining qualitative research. We specifically zoom in on this time frame because we would have expect that this more mature period would have produced clear discussions on the meaning of qualitative research. To find these articles we combined a number of keywords to search the content and/or the title: qualitative (which was always included), definition, empirical, research, methodology, studies, fieldwork, interview and observation .

As a second phase of our research we searched within nine major sociological journals ( American Journal of Sociology , Sociological Theory , American Sociological Review , Contemporary Sociology , Sociological Forum , Sociological Theory , Qualitative Research , Qualitative Sociology and Qualitative Sociology Review ) for articles also published during the past 19 years (1998–2017) that had the term “qualitative” in the title and attempted to define qualitative research.

Lastly we picked two additional journals, Qualitative Research and Qualitative Sociology , in which we could expect to find texts addressing the notion of “qualitative.” From Qualitative Research we chose Volume 14, Issue 6, December 2014, and from Qualitative Sociology we chose Volume 36, Issue 2, June 2017. Within each of these we selected the first article; then we picked the second article of three prior issues. Again we went back another three issues and investigated article number three. Finally we went back another three issues and perused article number four. This selection criteria was used to get a manageable sample for the analysis.

The coding process of the 89 references we gathered in our selected review began soon after the first round of material was gathered, and we reduced the complexity created by our maximum variation sampling (Snow and Anderson 1993 :22) to four different categories within which questions on the nature and properties of qualitative research were discussed. We call them: Qualitative and Quantitative Research, Qualitative Research, Fieldwork, and Grounded Theory. This – which may appear as an illogical grouping – merely reflects the “context” in which the matter of “qualitative” is discussed. If the selection process of the material – books and articles – was informed by pre-knowledge, we used an inductive strategy to code the material. When studying our material, we identified four central notions related to “qualitative” that appear in various combinations in the literature which indicate what is the core of qualitative research. We have labeled them: “distinctions”, “process,” “closeness,” and “improved understanding.” During the research process the categories and notions were improved, refined, changed, and reordered. The coding ended when a sense of saturation in the material arose. In the presentation below all quotations and references come from our empirical material of texts on qualitative research.

Analysis – What is Qualitative Research?

In this section we describe the four categories we identified in the coding, how they differently discuss qualitative research, as well as their overall content. Some salient quotations are selected to represent the type of text sorted under each of the four categories. What we present are examples from the literature.

Qualitative and Quantitative

This analytic category comprises quotations comparing qualitative and quantitative research, a distinction that is frequently used (Brown 2010 :231); in effect this is a conceptual pair that structures the discussion and that may be associated with opposing interests. While the general goal of quantitative and qualitative research is the same – to understand the world better – their methodologies and focus in certain respects differ substantially (Becker 1966 :55). Quantity refers to that property of something that can be determined by measurement. In a dictionary of Statistics and Methodology we find that “(a) When referring to *variables, ‘qualitative’ is another term for *categorical or *nominal. (b) When speaking of kinds of research, ‘qualitative’ refers to studies of subjects that are hard to quantify, such as art history. Qualitative research tends to be a residual category for almost any kind of non-quantitative research” (Stiles 1998:183). But it should be obvious that one could employ a quantitative approach when studying, for example, art history.

The same dictionary states that quantitative is “said of variables or research that can be handled numerically, usually (too sharply) contrasted with *qualitative variables and research” (Stiles 1998:184). From a qualitative perspective “quantitative research” is about numbers and counting, and from a quantitative perspective qualitative research is everything that is not about numbers. But this does not say much about what is “qualitative.” If we turn to encyclopedias we find that in the 1932 edition of the Encyclopedia of the Social Sciences there is no mention of “qualitative.” In the Encyclopedia from 1968 we can read:

Qualitative Analysis. For methods of obtaining, analyzing, and describing data, see [the various entries:] CONTENT ANALYSIS; COUNTED DATA; EVALUATION RESEARCH, FIELD WORK; GRAPHIC PRESENTATION; HISTORIOGRAPHY, especially the article on THE RHETORIC OF HISTORY; INTERVIEWING; OBSERVATION; PERSONALITY MEASUREMENT; PROJECTIVE METHODS; PSYCHOANALYSIS, article on EXPERIMENTAL METHODS; SURVEY ANALYSIS, TABULAR PRESENTATION; TYPOLOGIES. (Vol. 13:225)

Some, like Alford, divide researchers into methodologists or, in his words, “quantitative and qualitative specialists” (Alford 1998 :12). Qualitative research uses a variety of methods, such as intensive interviews or in-depth analysis of historical materials, and it is concerned with a comprehensive account of some event or unit (King et al. 1994 :4). Like quantitative research it can be utilized to study a variety of issues, but it tends to focus on meanings and motivations that underlie cultural symbols, personal experiences, phenomena and detailed understanding of processes in the social world. In short, qualitative research centers on understanding processes, experiences, and the meanings people assign to things (Kalof et al. 2008 :79).

Others simply say that qualitative methods are inherently unscientific (Jovanović 2011 :19). Hood, for instance, argues that words are intrinsically less precise than numbers, and that they are therefore more prone to subjective analysis, leading to biased results (Hood 2006 :219). Qualitative methodologies have raised concerns over the limitations of quantitative templates (Brady et al. 2004 :4). Scholars such as King et al. ( 1994 ), for instance, argue that non-statistical research can produce more reliable results if researchers pay attention to the rules of scientific inference commonly stated in quantitative research. Also, researchers such as Becker ( 1966 :59; 1970 :42–43) have asserted that, if conducted properly, qualitative research and in particular ethnographic field methods, can lead to more accurate results than quantitative studies, in particular, survey research and laboratory experiments.

Some researchers, such as Kalof, Dan, and Dietz ( 2008 :79) claim that the boundaries between the two approaches are becoming blurred, and Small ( 2009 ) argues that currently much qualitative research (especially in North America) tries unsuccessfully and unnecessarily to emulate quantitative standards. For others, qualitative research tends to be more humanistic and discursive (King et al. 1994 :4). Ragin ( 1994 ), and similarly also Becker, ( 1996 :53), Marchel and Owens ( 2007 :303) think that the main distinction between the two styles is overstated and does not rest on the simple dichotomy of “numbers versus words” (Ragin 1994 :xii). Some claim that quantitative data can be utilized to discover associations, but in order to unveil cause and effect a complex research design involving the use of qualitative approaches needs to be devised (Gilbert 2009 :35). Consequently, qualitative data are useful for understanding the nuances lying beyond those processes as they unfold (Gilbert 2009 :35). Others contend that qualitative research is particularly well suited both to identify causality and to uncover fine descriptive distinctions (Fine and Hallett 2014 ; Lichterman and Isaac Reed 2014 ; Katz 2015 ).

There are other ways to separate these two traditions, including normative statements about what qualitative research should be (that is, better or worse than quantitative approaches, concerned with scientific approaches to societal change or vice versa; Snow and Morrill 1995 ; Denzin and Lincoln 2005 ), or whether it should develop falsifiable statements; Best 2004 ).

We propose that quantitative research is largely concerned with pre-determined variables (Small 2008 ); the analysis concerns the relations between variables. These categories are primarily not questioned in the study, only their frequency or degree, or the correlations between them (cf. Franzosi 2016 ). If a researcher studies wage differences between women and men, he or she works with given categories: x number of men are compared with y number of women, with a certain wage attributed to each person. The idea is not to move beyond the given categories of wage, men and women; they are the starting point as well as the end point, and undergo no “qualitative change.” Qualitative research, in contrast, investigates relations between categories that are themselves subject to change in the research process. Returning to Becker’s study ( 1963 ), we see that he questioned pre-dispositional theories of deviant behavior working with pre-determined variables such as an individual’s combination of personal qualities or emotional problems. His take, in contrast, was to understand marijuana consumption by developing “variables” as part of the investigation. Thereby he presented new variables, or as we would say today, theoretical concepts, but which are grounded in the empirical material.

Qualitative Research

This category contains quotations that refer to descriptions of qualitative research without making comparisons with quantitative research. Researchers such as Denzin and Lincoln, who have written a series of influential handbooks on qualitative methods (1994; Denzin and Lincoln 2003 ; 2005 ), citing Nelson et al. (1992:4), argue that because qualitative research is “interdisciplinary, transdisciplinary, and sometimes counterdisciplinary” it is difficult to derive one single definition of it (Jovanović 2011 :3). According to them, in fact, “the field” is “many things at the same time,” involving contradictions, tensions over its focus, methods, and how to derive interpretations and findings ( 2003 : 11). Similarly, others, such as Flick ( 2007 :ix–x) contend that agreeing on an accepted definition has increasingly become problematic, and that qualitative research has possibly matured different identities. However, Best holds that “the proliferation of many sorts of activities under the label of qualitative sociology threatens to confuse our discussions” ( 2004 :54). Atkinson’s position is more definite: “the current state of qualitative research and research methods is confused” ( 2005 :3–4).

Qualitative research is about interpretation (Blumer 1969 ; Strauss and Corbin 1998 ; Denzin and Lincoln 2003 ), or Verstehen [understanding] (Frankfort-Nachmias and Nachmias 1996 ). It is “multi-method,” involving the collection and use of a variety of empirical materials (Denzin and Lincoln 1998; Silverman 2013 ) and approaches (Silverman 2005 ; Flick 2007 ). It focuses not only on the objective nature of behavior but also on its subjective meanings: individuals’ own accounts of their attitudes, motivations, behavior (McIntyre 2005 :127; Creswell 2009 ), events and situations (Bryman 1989) – what people say and do in specific places and institutions (Goodwin and Horowitz 2002 :35–36) in social and temporal contexts (Morrill and Fine 1997). For this reason, following Weber ([1921-22] 1978), it can be described as an interpretative science (McIntyre 2005 :127). But could quantitative research also be concerned with these questions? Also, as pointed out below, does all qualitative research focus on subjective meaning, as some scholars suggest?

Others also distinguish qualitative research by claiming that it collects data using a naturalistic approach (Denzin and Lincoln 2005 :2; Creswell 2009 ), focusing on the meaning actors ascribe to their actions. But again, does all qualitative research need to be collected in situ? And does qualitative research have to be inherently concerned with meaning? Flick ( 2007 ), referring to Denzin and Lincoln ( 2005 ), mentions conversation analysis as an example of qualitative research that is not concerned with the meanings people bring to a situation, but rather with the formal organization of talk. Still others, such as Ragin ( 1994 :85), note that qualitative research is often (especially early on in the project, we would add) less structured than other kinds of social research – a characteristic connected to its flexibility and that can lead both to potentially better, but also worse results. But is this not a feature of this type of research, rather than a defining description of its essence? Wouldn’t this comment also apply, albeit to varying degrees, to quantitative research?

In addition, Strauss ( 2003 ), along with others, such as Alvesson and Kärreman ( 2011 :10–76), argue that qualitative researchers struggle to capture and represent complex phenomena partially because they tend to collect a large amount of data. While his analysis is correct at some points – “It is necessary to do detailed, intensive, microscopic examination of the data in order to bring out the amazing complexity of what lies in, behind, and beyond those data” (Strauss 2003 :10) – much of his analysis concerns the supposed focus of qualitative research and its challenges, rather than exactly what it is about. But even in this instance we would make a weak case arguing that these are strictly the defining features of qualitative research. Some researchers seem to focus on the approach or the methods used, or even on the way material is analyzed. Several researchers stress the naturalistic assumption of investigating the world, suggesting that meaning and interpretation appear to be a core matter of qualitative research.

We can also see that in this category there is no consensus about specific qualitative methods nor about qualitative data. Many emphasize interpretation, but quantitative research, too, involves interpretation; the results of a regression analysis, for example, certainly have to be interpreted, and the form of meta-analysis that factor analysis provides indeed requires interpretation However, there is no interpretation of quantitative raw data, i.e., numbers in tables. One common thread is that qualitative researchers have to get to grips with their data in order to understand what is being studied in great detail, irrespective of the type of empirical material that is being analyzed. This observation is connected to the fact that qualitative researchers routinely make several adjustments of focus and research design as their studies progress, in many cases until the very end of the project (Kalof et al. 2008 ). If you, like Becker, do not start out with a detailed theory, adjustments such as the emergence and refinement of research questions will occur during the research process. We have thus found a number of useful reflections about qualitative research scattered across different sources, but none of them effectively describe the defining characteristics of this approach.

Although qualitative research does not appear to be defined in terms of a specific method, it is certainly common that fieldwork, i.e., research that entails that the researcher spends considerable time in the field that is studied and use the knowledge gained as data, is seen as emblematic of or even identical to qualitative research. But because we understand that fieldwork tends to focus primarily on the collection and analysis of qualitative data, we expected to find within it discussions on the meaning of “qualitative.” But, again, this was not the case.

Instead, we found material on the history of this approach (for example, Frankfort-Nachmias and Nachmias 1996 ; Atkinson et al. 2001), including how it has changed; for example, by adopting a more self-reflexive practice (Heyl 2001), as well as the different nomenclature that has been adopted, such as fieldwork, ethnography, qualitative research, naturalistic research, participant observation and so on (for example, Lofland et al. 2006 ; Gans 1999 ).

We retrieved definitions of ethnography, such as “the study of people acting in the natural courses of their daily lives,” involving a “resocialization of the researcher” (Emerson 1988 :1) through intense immersion in others’ social worlds (see also examples in Hammersley 2018 ). This may be accomplished by direct observation and also participation (Neuman 2007 :276), although others, such as Denzin ( 1970 :185), have long recognized other types of observation, including non-participant (“fly on the wall”). In this category we have also isolated claims and opposing views, arguing that this type of research is distinguished primarily by where it is conducted (natural settings) (Hughes 1971:496), and how it is carried out (a variety of methods are applied) or, for some most importantly, by involving an active, empathetic immersion in those being studied (Emerson 1988 :2). We also retrieved descriptions of the goals it attends in relation to how it is taught (understanding subjective meanings of the people studied, primarily develop theory, or contribute to social change) (see for example, Corte and Irwin 2017 ; Frankfort-Nachmias and Nachmias 1996 :281; Trier-Bieniek 2012 :639) by collecting the richest possible data (Lofland et al. 2006 ) to derive “thick descriptions” (Geertz 1973 ), and/or to aim at theoretical statements of general scope and applicability (for example, Emerson 1988 ; Fine 2003 ). We have identified guidelines on how to evaluate it (for example Becker 1996 ; Lamont 2004 ) and have retrieved instructions on how it should be conducted (for example, Lofland et al. 2006 ). For instance, analysis should take place while the data gathering unfolds (Emerson 1988 ; Hammersley and Atkinson 2007 ; Lofland et al. 2006 ), observations should be of long duration (Becker 1970 :54; Goffman 1989 ), and data should be of high quantity (Becker 1970 :52–53), as well as other questionable distinctions between fieldwork and other methods:

Field studies differ from other methods of research in that the researcher performs the task of selecting topics, decides what questions to ask, and forges interest in the course of the research itself . This is in sharp contrast to many ‘theory-driven’ and ‘hypothesis-testing’ methods. (Lofland and Lofland 1995 :5)

But could not, for example, a strictly interview-based study be carried out with the same amount of flexibility, such as sequential interviewing (for example, Small 2009 )? Once again, are quantitative approaches really as inflexible as some qualitative researchers think? Moreover, this category stresses the role of the actors’ meaning, which requires knowledge and close interaction with people, their practices and their lifeworld.

It is clear that field studies – which are seen by some as the “gold standard” of qualitative research – are nonetheless only one way of doing qualitative research. There are other methods, but it is not clear why some are more qualitative than others, or why they are better or worse. Fieldwork is characterized by interaction with the field (the material) and understanding of the phenomenon that is being studied. In Becker’s case, he had general experience from fields in which marihuana was used, based on which he did interviews with actual users in several fields.

Grounded Theory

Another major category we identified in our sample is Grounded Theory. We found descriptions of it most clearly in Glaser and Strauss’ ([1967] 2010 ) original articulation, Strauss and Corbin ( 1998 ) and Charmaz ( 2006 ), as well as many other accounts of what it is for: generating and testing theory (Strauss 2003 :xi). We identified explanations of how this task can be accomplished – such as through two main procedures: constant comparison and theoretical sampling (Emerson 1998:96), and how using it has helped researchers to “think differently” (for example, Strauss and Corbin 1998 :1). We also read descriptions of its main traits, what it entails and fosters – for instance, an exceptional flexibility, an inductive approach (Strauss and Corbin 1998 :31–33; 1990; Esterberg 2002 :7), an ability to step back and critically analyze situations, recognize tendencies towards bias, think abstractly and be open to criticism, enhance sensitivity towards the words and actions of respondents, and develop a sense of absorption and devotion to the research process (Strauss and Corbin 1998 :5–6). Accordingly, we identified discussions of the value of triangulating different methods (both using and not using grounded theory), including quantitative ones, and theories to achieve theoretical development (most comprehensively in Denzin 1970 ; Strauss and Corbin 1998 ; Timmermans and Tavory 2012 ). We have also located arguments about how its practice helps to systematize data collection, analysis and presentation of results (Glaser and Strauss [1967] 2010 :16).

Grounded theory offers a systematic approach which requires researchers to get close to the field; closeness is a requirement of identifying questions and developing new concepts or making further distinctions with regard to old concepts. In contrast to other qualitative approaches, grounded theory emphasizes the detailed coding process, and the numerous fine-tuned distinctions that the researcher makes during the process. Within this category, too, we could not find a satisfying discussion of the meaning of qualitative research.

Defining Qualitative Research

In sum, our analysis shows that some notions reappear in the discussion of qualitative research, such as understanding, interpretation, “getting close” and making distinctions. These notions capture aspects of what we think is “qualitative.” However, a comprehensive definition that is useful and that can further develop the field is lacking, and not even a clear picture of its essential elements appears. In other words no definition emerges from our data, and in our research process we have moved back and forth between our empirical data and the attempt to present a definition. Our concrete strategy, as stated above, is to relate qualitative and quantitative research, or more specifically, qualitative and quantitative work. We use an ideal-typical notion of quantitative research which relies on taken for granted and numbered variables. This means that the data consists of variables on different scales, such as ordinal, but frequently ratio and absolute scales, and the representation of the numbers to the variables, i.e. the justification of the assignment of numbers to object or phenomenon, are not questioned, though the validity may be questioned. In this section we return to the notion of quality and try to clarify it while presenting our contribution.

Broadly, research refers to the activity performed by people trained to obtain knowledge through systematic procedures. Notions such as “objectivity” and “reflexivity,” “systematic,” “theory,” “evidence” and “openness” are here taken for granted in any type of research. Next, building on our empirical analysis we explain the four notions that we have identified as central to qualitative work: distinctions, process, closeness, and improved understanding. In discussing them, ultimately in relation to one another, we make their meaning even more precise. Our idea, in short, is that only when these ideas that we present separately for analytic purposes are brought together can we speak of qualitative research.

Distinctions

We believe that the possibility of making new distinctions is one the defining characteristics of qualitative research. It clearly sets it apart from quantitative analysis which works with taken-for-granted variables, albeit as mentioned, meta-analyses, for example, factor analysis may result in new variables. “Quality” refers essentially to distinctions, as already pointed out by Aristotle. He discusses the term “qualitative” commenting: “By a quality I mean that in virtue of which things are said to be qualified somehow” (Aristotle 1984:14). Quality is about what something is or has, which means that the distinction from its environment is crucial. We see qualitative research as a process in which significant new distinctions are made to the scholarly community; to make distinctions is a key aspect of obtaining new knowledge; a point, as we will see, that also has implications for “quantitative research.” The notion of being “significant” is paramount. New distinctions by themselves are not enough; just adding concepts only increases complexity without furthering our knowledge. The significance of new distinctions is judged against the communal knowledge of the research community. To enable this discussion and judgements central elements of rational discussion are required (cf. Habermas [1981] 1987 ; Davidsson [ 1988 ] 2001) to identify what is new and relevant scientific knowledge. Relatedly, Ragin alludes to the idea of new and useful knowledge at a more concrete level: “Qualitative methods are appropriate for in-depth examination of cases because they aid the identification of key features of cases. Most qualitative methods enhance data” (1994:79). When Becker ( 1963 ) studied deviant behavior and investigated how people became marihuana smokers, he made distinctions between the ways in which people learned how to smoke. This is a classic example of how the strategy of “getting close” to the material, for example the text, people or pictures that are subject to analysis, may enable researchers to obtain deeper insight and new knowledge by making distinctions – in this instance on the initial notion of learning how to smoke. Others have stressed the making of distinctions in relation to coding or theorizing. Emerson et al. ( 1995 ), for example, hold that “qualitative coding is a way of opening up avenues of inquiry,” meaning that the researcher identifies and develops concepts and analytic insights through close examination of and reflection on data (Emerson et al. 1995 :151). Goodwin and Horowitz highlight making distinctions in relation to theory-building writing: “Close engagement with their cases typically requires qualitative researchers to adapt existing theories or to make new conceptual distinctions or theoretical arguments to accommodate new data” ( 2002 : 37). In the ideal-typical quantitative research only existing and so to speak, given, variables would be used. If this is the case no new distinction are made. But, would not also many “quantitative” researchers make new distinctions?

Process does not merely suggest that research takes time. It mainly implies that qualitative new knowledge results from a process that involves several phases, and above all iteration. Qualitative research is about oscillation between theory and evidence, analysis and generating material, between first- and second -order constructs (Schütz 1962 :59), between getting in contact with something, finding sources, becoming deeply familiar with a topic, and then distilling and communicating some of its essential features. The main point is that the categories that the researcher uses, and perhaps takes for granted at the beginning of the research process, usually undergo qualitative changes resulting from what is found. Becker describes how he tested hypotheses and let the jargon of the users develop into theoretical concepts. This happens over time while the study is being conducted, exemplifying what we mean by process.

In the research process, a pilot-study may be used to get a first glance of, for example, the field, how to approach it, and what methods can be used, after which the method and theory are chosen or refined before the main study begins. Thus, the empirical material is often central from the start of the project and frequently leads to adjustments by the researcher. Likewise, during the main study categories are not fixed; the empirical material is seen in light of the theory used, but it is also given the opportunity to kick back, thereby resisting attempts to apply theoretical straightjackets (Becker 1970 :43). In this process, coding and analysis are interwoven, and thus are often important steps for getting closer to the phenomenon and deciding what to focus on next. Becker began his research by interviewing musicians close to him, then asking them to refer him to other musicians, and later on doubling his original sample of about 25 to include individuals in other professions (Becker 1973:46). Additionally, he made use of some participant observation, documents, and interviews with opiate users made available to him by colleagues. As his inductive theory of deviance evolved, Becker expanded his sample in order to fine tune it, and test the accuracy and generality of his hypotheses. In addition, he introduced a negative case and discussed the null hypothesis ( 1963 :44). His phasic career model is thus based on a research design that embraces processual work. Typically, process means to move between “theory” and “material” but also to deal with negative cases, and Becker ( 1998 ) describes how discovering these negative cases impacted his research design and ultimately its findings.

Obviously, all research is process-oriented to some degree. The point is that the ideal-typical quantitative process does not imply change of the data, and iteration between data, evidence, hypotheses, empirical work, and theory. The data, quantified variables, are, in most cases fixed. Merging of data, which of course can be done in a quantitative research process, does not mean new data. New hypotheses are frequently tested, but the “raw data is often the “the same.” Obviously, over time new datasets are made available and put into use.

Another characteristic that is emphasized in our sample is that qualitative researchers – and in particular ethnographers – can, or as Goffman put it, ought to ( 1989 ), get closer to the phenomenon being studied and their data than quantitative researchers (for example, Silverman 2009 :85). Put differently, essentially because of their methods qualitative researchers get into direct close contact with those being investigated and/or the material, such as texts, being analyzed. Becker started out his interview study, as we noted, by talking to those he knew in the field of music to get closer to the phenomenon he was studying. By conducting interviews he got even closer. Had he done more observations, he would undoubtedly have got even closer to the field.

Additionally, ethnographers’ design enables researchers to follow the field over time, and the research they do is almost by definition longitudinal, though the time in the field is studied obviously differs between studies. The general characteristic of closeness over time maximizes the chances of unexpected events, new data (related, for example, to archival research as additional sources, and for ethnography for situations not necessarily previously thought of as instrumental – what Mannay and Morgan ( 2015 ) term the “waiting field”), serendipity (Merton and Barber 2004 ; Åkerström 2013 ), and possibly reactivity, as well as the opportunity to observe disrupted patterns that translate into exemplars of negative cases. Two classic examples of this are Becker’s finding of what medical students call “crocks” (Becker et al. 1961 :317), and Geertz’s ( 1973 ) study of “deep play” in Balinese society.

By getting and staying so close to their data – be it pictures, text or humans interacting (Becker was himself a musician) – for a long time, as the research progressively focuses, qualitative researchers are prompted to continually test their hunches, presuppositions and hypotheses. They test them against a reality that often (but certainly not always), and practically, as well as metaphorically, talks back, whether by validating them, or disqualifying their premises – correctly, as well as incorrectly (Fine 2003 ; Becker 1970 ). This testing nonetheless often leads to new directions for the research. Becker, for example, says that he was initially reading psychological theories, but when facing the data he develops a theory that looks at, you may say, everything but psychological dispositions to explain the use of marihuana. Especially researchers involved with ethnographic methods have a fairly unique opportunity to dig up and then test (in a circular, continuous and temporal way) new research questions and findings as the research progresses, and thereby to derive previously unimagined and uncharted distinctions by getting closer to the phenomenon under study.

Let us stress that getting close is by no means restricted to ethnography. The notion of hermeneutic circle and hermeneutics as a general way of understanding implies that we must get close to the details in order to get the big picture. This also means that qualitative researchers can literally also make use of details of pictures as evidence (cf. Harper 2002). Thus, researchers may get closer both when generating the material or when analyzing it.

Quantitative research, we maintain, in the ideal-typical representation cannot get closer to the data. The data is essentially numbers in tables making up the variables (Franzosi 2016 :138). The data may originally have been “qualitative,” but once reduced to numbers there can only be a type of “hermeneutics” about what the number may stand for. The numbers themselves, however, are non-ambiguous. Thus, in quantitative research, interpretation, if done, is not about the data itself—the numbers—but what the numbers stand for. It follows that the interpretation is essentially done in a more “speculative” mode without direct empirical evidence (cf. Becker 2017 ).

Improved Understanding

While distinction, process and getting closer refer to the qualitative work of the researcher, improved understanding refers to its conditions and outcome of this work. Understanding cuts deeper than explanation, which to some may mean a causally verified correlation between variables. The notion of explanation presupposes the notion of understanding since explanation does not include an idea of how knowledge is gained (Manicas 2006 : 15). Understanding, we argue, is the core concept of what we call the outcome of the process when research has made use of all the other elements that were integrated in the research. Understanding, then, has a special status in qualitative research since it refers both to the conditions of knowledge and the outcome of the process. Understanding can to some extent be seen as the condition of explanation and occurs in a process of interpretation, which naturally refers to meaning (Gadamer 1990 ). It is fundamentally connected to knowing, and to the knowing of how to do things (Heidegger [1927] 2001 ). Conceptually the term hermeneutics is used to account for this process. Heidegger ties hermeneutics to human being and not possible to separate from the understanding of being ( 1988 ). Here we use it in a broader sense, and more connected to method in general (cf. Seiffert 1992 ). The abovementioned aspects – for example, “objectivity” and “reflexivity” – of the approach are conditions of scientific understanding. Understanding is the result of a circular process and means that the parts are understood in light of the whole, and vice versa. Understanding presupposes pre-understanding, or in other words, some knowledge of the phenomenon studied. The pre-understanding, even in the form of prejudices, are in qualitative research process, which we see as iterative, questioned, which gradually or suddenly change due to the iteration of data, evidence and concepts. However, qualitative research generates understanding in the iterative process when the researcher gets closer to the data, e.g., by going back and forth between field and analysis in a process that generates new data that changes the evidence, and, ultimately, the findings. Questioning, to ask questions, and put what one assumes—prejudices and presumption—in question, is central to understand something (Heidegger [1927] 2001 ; Gadamer 1990 :368–384). We propose that this iterative process in which the process of understanding occurs is characteristic of qualitative research.

Improved understanding means that we obtain scientific knowledge of something that we as a scholarly community did not know before, or that we get to know something better. It means that we understand more about how parts are related to one another, and to other things we already understand (see also Fine and Hallett 2014 ). Understanding is an important condition for qualitative research. It is not enough to identify correlations, make distinctions, and work in a process in which one gets close to the field or phenomena. Understanding is accomplished when the elements are integrated in an iterative process.

It is, moreover, possible to understand many things, and researchers, just like children, may come to understand new things every day as they engage with the world. This subjective condition of understanding – namely, that a person gains a better understanding of something –is easily met. To be qualified as “scientific,” the understanding must be general and useful to many; it must be public. But even this generally accessible understanding is not enough in order to speak of “scientific understanding.” Though we as a collective can increase understanding of everything in virtually all potential directions as a result also of qualitative work, we refrain from this “objective” way of understanding, which has no means of discriminating between what we gain in understanding. Scientific understanding means that it is deemed relevant from the scientific horizon (compare Schütz 1962 : 35–38, 46, 63), and that it rests on the pre-understanding that the scientists have and must have in order to understand. In other words, the understanding gained must be deemed useful by other researchers, so that they can build on it. We thus see understanding from a pragmatic, rather than a subjective or objective perspective. Improved understanding is related to the question(s) at hand. Understanding, in order to represent an improvement, must be an improvement in relation to the existing body of knowledge of the scientific community (James [ 1907 ] 1955). Scientific understanding is, by definition, collective, as expressed in Weber’s famous note on objectivity, namely that scientific work aims at truths “which … can claim, even for a Chinese, the validity appropriate to an empirical analysis” ([1904] 1949 :59). By qualifying “improved understanding” we argue that it is a general defining characteristic of qualitative research. Becker‘s ( 1966 ) study and other research of deviant behavior increased our understanding of the social learning processes of how individuals start a behavior. And it also added new knowledge about the labeling of deviant behavior as a social process. Few studies, of course, make the same large contribution as Becker’s, but are nonetheless qualitative research.

Understanding in the phenomenological sense, which is a hallmark of qualitative research, we argue, requires meaning and this meaning is derived from the context, and above all the data being analyzed. The ideal-typical quantitative research operates with given variables with different numbers. This type of material is not enough to establish meaning at the level that truly justifies understanding. In other words, many social science explanations offer ideas about correlations or even causal relations, but this does not mean that the meaning at the level of the data analyzed, is understood. This leads us to say that there are indeed many explanations that meet the criteria of understanding, for example the explanation of how one becomes a marihuana smoker presented by Becker. However, we may also understand a phenomenon without explaining it, and we may have potential explanations, or better correlations, that are not really understood.

We may speak more generally of quantitative research and its data to clarify what we see as an important distinction. The “raw data” that quantitative research—as an idealtypical activity, refers to is not available for further analysis; the numbers, once created, are not to be questioned (Franzosi 2016 : 138). If the researcher is to do “more” or “change” something, this will be done by conjectures based on theoretical knowledge or based on the researcher’s lifeworld. Both qualitative and quantitative research is based on the lifeworld, and all researchers use prejudices and pre-understanding in the research process. This idea is present in the works of Heidegger ( 2001 ) and Heisenberg (cited in Franzosi 2010 :619). Qualitative research, as we argued, involves the interaction and questioning of concepts (theory), data, and evidence.

Ragin ( 2004 :22) points out that “a good definition of qualitative research should be inclusive and should emphasize its key strengths and features, not what it lacks (for example, the use of sophisticated quantitative techniques).” We define qualitative research as an iterative process in which improved understanding to the scientific community is achieved by making new significant distinctions resulting from getting closer to the phenomenon studied. Qualitative research, as defined here, is consequently a combination of two criteria: (i) how to do things –namely, generating and analyzing empirical material, in an iterative process in which one gets closer by making distinctions, and (ii) the outcome –improved understanding novel to the scholarly community. Is our definition applicable to our own study? In this study we have closely read the empirical material that we generated, and the novel distinction of the notion “qualitative research” is the outcome of an iterative process in which both deduction and induction were involved, in which we identified the categories that we analyzed. We thus claim to meet the first criteria, “how to do things.” The second criteria cannot be judged but in a partial way by us, namely that the “outcome” —in concrete form the definition-improves our understanding to others in the scientific community.

We have defined qualitative research, or qualitative scientific work, in relation to quantitative scientific work. Given this definition, qualitative research is about questioning the pre-given (taken for granted) variables, but it is thus also about making new distinctions of any type of phenomenon, for example, by coining new concepts, including the identification of new variables. This process, as we have discussed, is carried out in relation to empirical material, previous research, and thus in relation to theory. Theory and previous research cannot be escaped or bracketed. According to hermeneutic principles all scientific work is grounded in the lifeworld, and as social scientists we can thus never fully bracket our pre-understanding.

We have proposed that quantitative research, as an idealtype, is concerned with pre-determined variables (Small 2008 ). Variables are epistemically fixed, but can vary in terms of dimensions, such as frequency or number. Age is an example; as a variable it can take on different numbers. In relation to quantitative research, qualitative research does not reduce its material to number and variables. If this is done the process of comes to a halt, the researcher gets more distanced from her data, and it makes it no longer possible to make new distinctions that increase our understanding. We have above discussed the components of our definition in relation to quantitative research. Our conclusion is that in the research that is called quantitative there are frequent and necessary qualitative elements.

Further, comparative empirical research on researchers primarily working with ”quantitative” approaches and those working with ”qualitative” approaches, we propose, would perhaps show that there are many similarities in practices of these two approaches. This is not to deny dissimilarities, or the different epistemic and ontic presuppositions that may be more or less strongly associated with the two different strands (see Goertz and Mahoney 2012 ). Our point is nonetheless that prejudices and preconceptions about researchers are unproductive, and that as other researchers have argued, differences may be exaggerated (e.g., Becker 1996 : 53, 2017 ; Marchel and Owens 2007 :303; Ragin 1994 ), and that a qualitative dimension is present in both kinds of work.

Several things follow from our findings. The most important result is the relation to quantitative research. In our analysis we have separated qualitative research from quantitative research. The point is not to label individual researchers, methods, projects, or works as either “quantitative” or “qualitative.” By analyzing, i.e., taking apart, the notions of quantitative and qualitative, we hope to have shown the elements of qualitative research. Our definition captures the elements, and how they, when combined in practice, generate understanding. As many of the quotations we have used suggest, one conclusion of our study holds that qualitative approaches are not inherently connected with a specific method. Put differently, none of the methods that are frequently labelled “qualitative,” such as interviews or participant observation, are inherently “qualitative.” What matters, given our definition, is whether one works qualitatively or quantitatively in the research process, until the results are produced. Consequently, our analysis also suggests that those researchers working with what in the literature and in jargon is often called “quantitative research” are almost bound to make use of what we have identified as qualitative elements in any research project. Our findings also suggest that many” quantitative” researchers, at least to some extent, are engaged with qualitative work, such as when research questions are developed, variables are constructed and combined, and hypotheses are formulated. Furthermore, a research project may hover between “qualitative” and “quantitative” or start out as “qualitative” and later move into a “quantitative” (a distinct strategy that is not similar to “mixed methods” or just simply combining induction and deduction). More generally speaking, the categories of “qualitative” and “quantitative,” unfortunately, often cover up practices, and it may lead to “camps” of researchers opposing one another. For example, regardless of the researcher is primarily oriented to “quantitative” or “qualitative” research, the role of theory is neglected (cf. Swedberg 2017 ). Our results open up for an interaction not characterized by differences, but by different emphasis, and similarities.

Let us take two examples to briefly indicate how qualitative elements can fruitfully be combined with quantitative. Franzosi ( 2010 ) has discussed the relations between quantitative and qualitative approaches, and more specifically the relation between words and numbers. He analyzes texts and argues that scientific meaning cannot be reduced to numbers. Put differently, the meaning of the numbers is to be understood by what is taken for granted, and what is part of the lifeworld (Schütz 1962 ). Franzosi shows how one can go about using qualitative and quantitative methods and data to address scientific questions analyzing violence in Italy at the time when fascism was rising (1919–1922). Aspers ( 2006 ) studied the meaning of fashion photographers. He uses an empirical phenomenological approach, and establishes meaning at the level of actors. In a second step this meaning, and the different ideal-typical photographers constructed as a result of participant observation and interviews, are tested using quantitative data from a database; in the first phase to verify the different ideal-types, in the second phase to use these types to establish new knowledge about the types. In both of these cases—and more examples can be found—authors move from qualitative data and try to keep the meaning established when using the quantitative data.

A second main result of our study is that a definition, and we provided one, offers a way for research to clarify, and even evaluate, what is done. Hence, our definition can guide researchers and students, informing them on how to think about concrete research problems they face, and to show what it means to get closer in a process in which new distinctions are made. The definition can also be used to evaluate the results, given that it is a standard of evaluation (cf. Hammersley 2007 ), to see whether new distinctions are made and whether this improves our understanding of what is researched, in addition to the evaluation of how the research was conducted. By making what is qualitative research explicit it becomes easier to communicate findings, and it is thereby much harder to fly under the radar with substandard research since there are standards of evaluation which make it easier to separate “good” from “not so good” qualitative research.

To conclude, our analysis, which ends with a definition of qualitative research can thus both address the “internal” issues of what is qualitative research, and the “external” critiques that make it harder to do qualitative research, to which both pressure from quantitative methods and general changes in society contribute.

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Acknowledgements

Financial Support for this research is given by the European Research Council, CEV (263699). The authors are grateful to Susann Krieglsteiner for assistance in collecting the data. The paper has benefitted from the many useful comments by the three reviewers and the editor, comments by members of the Uppsala Laboratory of Economic Sociology, as well as Jukka Gronow, Sebastian Kohl, Marcin Serafin, Richard Swedberg, Anders Vassenden and Turid Rødne.

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“The healthcare system did fail me repeatedly”: a qualitative study on experiences of healthcare among Canadian women with Cushing’s syndrome

• Sarah C Jones 1 ,
• Sarah Nutter 2 , 3 &
• Jessica F Saunders 4  

BMC Primary Care volume  25 , Article number:  329 ( 2024 ) Cite this article

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As a rare endocrine disorder, Cushing’s Syndrome (Cushing’s) is characterized by numerous symptoms and a non-specific presentation, leading to a delay to diagnosis for patients with this disease. To date, research examining the lived experiences of patients with Cushing’s in healthcare is absent in the literature. This preliminary inquiry into the healthcare experiences of women with Cushing’s aimed to examine the utility of this line of inquiry to support the patient centered care of individuals with Cushing’s.

Seven women from across Canada with endogenous Cushing’s participated in the study. Semi-structured interviews were conducted examining participants’ healthcare and body-related experiences with Cushing’s. Results pertaining to healthcare experiences were analyzed for the current study using reflexive thematic analysis.

Four themes emerged whereby women with Cushing’s experienced (1) a lack of patient centered care, characterized by provider miscommunication and medical gaslighting; (2) a misunderstanding of their symptoms as related to weight gain; (3) weight stigma in healthcare encounters; and (4) a shift in their quality of care following diagnosis.

Conclusions

The results highlight the importance of patient centered care as well as the negative impact of commonly reported barriers to patient centered care. Cushing’s specific barriers to patient centered care may include weight stigma as well as the rare incidence of Cushing’s. Further research is needed to better understand the healthcare experiences of people with Cushing’s in Canada.

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Cushing Syndrome (Cushing’s) is a rare disorder caused by an increase in circulating free cortisol [ 1 ]. As receptors for glucocorticoids are widespread throughout the body, the effect of this increase in circulating cortisol is prolific [ 2 ]. Symptoms include uncontrollable weight gain, dorsocervical fat pad, facial plethora, purple striae, easy bruising, fatigue, proximal myopathy, hypertension, as well as menstrual irregularities and hirsutism among women [ 1 , 3 ]. While Cushing’s is most often caused by corticosteroids (i.e., exogenous Cushing’s) with a more easily identifiable cause, this research is focused on endogenous Cushing’s, which occurs at an approximate rate of 3.2 cases per million per year globally [ 4 ]. Endogenous Cushing’s is divided into two types: adrenocorticotropic hormone (ACTH) dependent and ACTH independent [ 2 ]. ACTH dependent Cushing’s comprise approximately 80% of endogenous Cushing’s cases and is caused by ACTH secreting tumours most often on the pituitary (i.e., Cushing’s disease), or an ectopic ACTH secreting tumour found elsewhere in the body [ 2 ]. ACTH Independent Cushing’s cases account for the remaining 20% and are most often caused by adrenal cortical adenomas or hyperplasia [ 5 ].

The rare rate of occurrence, coupled with the broad symptomology contributes to the challenges with diagnosing Cushing’s, with a delay to diagnosis of two to six years [ 6 , 7 ]. Although individuals may experience few symptoms its early stages, disease progression that occurs with delayed diagnosis can lead to significant impairment in daily life as well as hypertension, metabolic diseases, and other complications [ 8 ]. Given that the incidence of Cushing’s is higher among women compared to men, [ 9 ]. as well as the gendered nature of weight and appearance expectations for women in society (i.e., thinness), [ 10 ] understanding the impact of this disease on women is an important, but unexplored, direction for women’s health research.

The non-specific presentation and rare occurrence of endogenous Cushing’s is also important to consider in the context of patient centered care, defined as relationship-based care that meets the needs, priorities, and values of patients [ 11 , 12 ]. Patient centered care focuses on the creation of a positive therapeutic alliance between patient and provider, with shared power and responsibility in decision making [ 11 , 12 ]. A recent systematic literature review identified that most barriers to patient centered care occur at the provider level, including lack of training, physician burnout, and poor-quality communication [ 12 ]. One potential barrier to patient centered care for individuals with Cushing’s is weight stigma (i.e., stereotypes and negative attitudes about people with higher weights), which is prevalent in healthcare, [ 13 , 14 ] and is associated with consequences for healthcare utilization [ 15 , 16 ].

Although researchers have documented the clinical presentation of Cushing’s, [ 7 ] approaches to working with patients with a possible diagnosis, [ 1 ] as well as treatment approaches and outcomes, [ 17 , 18 ] there is an absence of research on the lived experience of patients with Cushing’s in healthcare. Given the established delay to diagnosis of Cushing’s [ 6 , 7 ] and the possible impact of weight stigma on patient centered care, we sought to conduct a preliminary inquiry into the patient experience in primary care. Thus, the aim of this study was to examine the healthcare experiences of women with Cushing’s in Canada, as women experience greater incidence of Cushing’s [ 9 ] as well as greater appearance-based sociocultural pressures [ 10 ].

Research team background and epistemological underpinnings

We recognize that our identities and positionalities as researchers have a significant impact on the research we conduct [ 19 ]. All authors identify as White cisgender women with lived experiences with weight-related issues, and SCJ has lived experience of Cushing’s Disease. SCJ led this research project as part of her degree requirements in a double-major biology and psychology undergraduate program. SN is a weight stigma researcher with a background in qualitative research. JFS conducts research on body image and eating disorder recovery, with a background in qualitative methods. Further, this research was undertaken from a social constructionist epistemological position, recognizing the power of sociocultural discourses related to appearance, weight, and health on the experiences of higher-weight people in society broadly as well as healthcare specifically [ 20 , 21 , 22 ]. These sociocultural discourses position weight as an accurate indicator of health that is within individual control, with lower body weights considered healthiest (i.e., “normal” weight body mass index) [ 20 , 21 , 22 ].

Participants

Participants were seven women from across Canada (see Table  1 for demographics). The mean age of the sample was 44.14 ( SD  = 13.32) and mean self-reported time to Cushing’s diagnosis after first seeking medical care was 2.14 years (SD = 0.58). Six participants experienced Adrenocorticotropic hormone (ACTH) dependent Cushing’s, while one patient experienced ACTH independent adrenal adenoma. Of the six participants with ACTH dependent Cushing’s, five had an ACTH secreting pituitary adenoma and one participant had an ectopic ACTH producing lung carcinoma. All participants self-declared that they exhibited clinically significant 24-hour urine free cortisol levels, which contributed to their diagnosis.

This study received research ethics approval from the first and second authors’ institution (#21–0507). Convenience sampling occurred in February 2022 via a shareable recruitment post on five Facebook support groups for Cushing’s Syndrome. Potential participants were directed to reach out to the first author to indicate their interest in the study. Participation was limited to cisgender women over the age of 18 who had been diagnosed with endogenous Cushing’s and received care in the Canadian healthcare system. Nine individuals from one Facebook support group contacted the researcher, two of whom did not receive treatment in Canada. The remaining seven participants were provided with a consent form and demographics survey, which they completed prior to scheduling a semi-structured interview.

Following the completion of informed consent, interviews took place over zoom, in a private location of the participant’s choosing. To obtain a rich understanding of experiences with Cushing’s, we asked a series of questions about participants’: (1) journey to diagnosis, (2) healthcare experience pre- and post-diagnosis, and (3) perception of body and weight pre- and post-diagnosis. Interview questions were open-ended and provided opportunity for participants to describe positive and/or negative experiences. Please see the Appendix for full interview protocol. Interviews lasted approximately one hour with $30 compensation, were recorded, and were transcribed verbatim by the first author. Following transcription, participants had the opportunity to review their transcript and remove any data they were uncomfortable including in the analysis (i.e., member checking). One participant removed a small portion of her transcript, which did not impact the analysis.

Following transcription, anonymization, and member checking, the first and second author used a qualitative descriptive approach [ 23 ] in the preliminary data analysis stages to become familiar with the data and the experiences of the seven women interviewed. Two main content areas predominated: (1) negative experiences in healthcare and (2) women’s body image as connected to Cushing’s-related changes. Given these divergent content areas, the research team engaged in a two-pronged approach to qualitative data analysis, one for the negative healthcare experiences (reported here) and one for women’s body image.

The data pertaining to negative experiences in healthcare were analysed using reflexive thematic analysis [ 24 , 25 ]. This method allowed for a rich and flexible understanding of similarities in individual experiences. To generate themes, the first and second authors read the transcripts line-by-line and assigned descriptive codes, which were then reviewed and re-coded at a more interpretive level to create themes in the data, both latent (i.e., underlying) and semantic (i.e., explicitly stated) [ 24 , 25 ]. Themes were reviewed and approved by all authors. Throughout data collection and analysis, effort was made to discuss reactions to the data and potential biases.

The results of the inductive thematic analysis indicated four overarching themes in the data: (1) lack of patient centered care prior to diagnosis; (2) patient misunderstanding of symptoms; (3) experienced weight stigma; and (4) diagnosis as a golden ticket to treatment and stigma-reduced care. Each of these themes is reviewed below.

Lack of patient-centered care

Lack of patient-centered care prior to diagnosis often took two forms: (1) provider miscommunication, and (2) medical gaslighting. These sub-themes are described below.

Provider miscommunication. In the beginning stages of their investigations, participants reported difficulties in communication with their primary care providers. Honey stated that she was “ going back and forth continually , feeling like I wasn’t being heard , feeling like I had to fight for every… For every feeling. I had to try to justify everything I was saying .” Similarly, Abby noted: “I’d started to wake up in the morning with little bruises on my body like almost like a fingerprint. And I thought that was weird and I brought it up to her … And she was like oh that , there’s nothing wrong with that , it’s fine.” Participants described confusion and worry when they perceived that something was wrong but did not perceive they were being taken seriously by their primary care provider.

Sometimes, miscommunication made the diagnostic process even more challenging, as was the case when Bethany was asked about stretch marks by her family doctor:

I remember my family doctor asking me at one point , do you have stretch marks? And I said , ‘no , I don’t have stretch marks. Last time I had them was when I was pregnant. And that was many years ago.’ But he didn’t describe the stretch marks. I was thinking of the pregnancy stretch marks with the fine white lines. And he must have thought about Cushing’s with the striae that are wide and purple. But there was no description of them. If I had [a description] , I would have shown them immediately!

Christy noted how phone appointments may have negatively impacted her diagnostic process:

All of this went down in the [COVID-19] pandemic, so I actually never met a doctor in person about this ever. … I explain the weight gain I’m like kay I was 110. Now I’m 230 and these are the bursts. These are when it happened. Um, but they actually never saw me, not once, not even over zoom it was all over the phone … When I explained how much I gained they were just like, no.

In general, participants felt like they were not receiving the care they hoped for from their primary care provider. For example, Abby said that “ Cushing’s patients have a lot of things going on and most regular doctors when they see you…they think you’re a hypochondriac because there’s always something wrong with [you] .” Participants perceived their primary care providers as missing the big picture. Darby recognized that “ I think each time I went into the doctor for the different things , … I would go in for specific things , but we never sort of put them all together as to what it was.” In describing her frustration with this process, Emily said: “ And I’m just like how many other people are struggling with stuff like this , and they just get [dismissed] .” Together, this miscommunication contributed, in part, to the delayed diagnosis, as it took time for providers to recognize the possible diagnosis of Cushing’s.

Medical gaslighting. Medical gaslighting is the process by which medical professionals will downplay, dismiss, or silence a patients’ view of their illness [ 26 ]. Abby described her experience with the first primary care provider she consulted: “ he basically told me that I had mental baggage , and it was that I was a head case and that was my problem. ” After moving to a different city, she described the next provider she met with as having a similarly dismissing response: “ I also explained to her what was going on. I said I think there’s something wrong , I exercise and the harder the exercise more I gain weight. She basically said you’re not trying hard enough and suggested the South Beach diet to me. ” Besides their weight, other symptoms were also dismissed. Emily said:

It was always passed off as oh, your high-stress job, high-stress family life, you’re depressed; those were always the comments to me. You’re just depressed, you’re just anxious because of this stuff and blah blah, blah. … As time went on the symptoms started multiplying. So, I’m like it’s not just not sleeping and depressed and anxious I’m like… my resting heart rate is in the 160’s without moving um, my vision’s starting to get impaired, I feel like I’m crazy, um and then the weight gain started. And once again they just said oh you know take up, take up cycling. That’s what the doctor told me.

In describing her experiences with feeling downplayed or dismissed, Honey stated:

I had swollen hands and feet, too, so he said, Well, you’re gonna have to get your diet under control, and I said well my diet is really good actually and I’ve been going to weight watchers for a year, haven’t dropped a pound, so there’s an issue there. And again, he would just chalk it up to PMS.

Honey also experienced skin sensitivities and was told she simply needed to use sunscreen more frequently. During the diagnostic process, Christy experienced medical gaslighting when completing her 24-hour urine free cortisol test:

I did the test and waited months again for my results. And then it came back super high. And so, he accused me of doing the test wrong. He said there’s no way um this makes sense. You need to do the test again. So, then I did the test again. And it was high again. And he accused me of doing it wrong again. And I was like, I’m telling you like I don’t know what you, I’ve got the instructions in front of me. … And so I did it again, and it came back like again in the thousands. … I did feel like I was going nuts, the same way when he kept telling me I was doing the test wrong.

Patient misunderstanding of symptoms

Participants also described misunderstanding their symptoms, which highlights a further breakdown in patient-provider communication about their disease, as these misperceptions were not clarified for them upon diagnosis and treatment. Participants appeared to hyper-fixate on, and misunderstand, their weight gain. They also misunderstood other symptoms as related to weight. Emily noted this fixation on weight directly when she said: “In the very beginning I noticed the weight gain first to be honest.” Abby shared that she decided to approach a health professional because of her weight gain:

I was a happy , healthy active athletic person , and all of a sudden something in my life happened where I just kept gaining weight and gaining weight. No matter how much like exercising or eating properly that I had done … The catalyst for me going to the doctor was , um , I noticed a bunch of stretch marks on my stomach and to me that was a sign of like rapid weight gain in such a small amount of time.

Like Abby, other participants misunderstood their weight gain and attempted to engage in behavioural changes to reverse this process. Bethany said:

Thankfully I did not have a doctor that told me to go and exercise and eat less. But when you did that, you still gained weight. The more I exercised, the more walking I did, the less I ate, the more I gained and the rounder the face got. And the more hair I lost.

Similarly, Christy described her weight gain as the catalyst behind her decision to hire a personal trainer:

I kind of decided based on super significant weight gain that I was going to invest in a personal trainer… So, I was with the personal trainer for about three months, and was only gaining weight, like I was cutting calories and working out I think it was like 12 times a week. … But everything was just getting worse. Like I was weaker, I couldn’t do things the same way that I used to, like the stretch marks were nuts I kept gaining weight I didn’t know why, despite still I was still walking every day and doing what I could.

When describing their experience of symptom onset prior to receiving their diagnosis, participants understood many of their physical changes as connected to their weight gain. This was especially true for those experiences that surrounded muscle weakening and movement, despite these being Cushing’s symptoms that are independent from weight. Bethany recalls how, when called for her appointment in her primary care provider’s waiting room, she “ staggered to stand up and was almost immobile to a point , I was so big ,” an experience she attributed to her weight gain. As symptoms worsened, participants felt disconnected from their bodies. Emily said: “ I can’t trust [my] own body ,” and Christy felt “ so exhausted ” because “ of course that’s exhausting. Like , carrying all that [weight] around is tiring. Like , if you’re not exhausted , that would be weird.”

Participants also noted a misunderstanding of other Cushing’s symptoms, both alongside and independent of their weight gain. In recognizing the impact of stress on her symptoms, Honey said:

I opened a business, and the stress came back because of that, and then everything came to a head. Then I got the bruising, then I got the buffalo shoulders, then I got the big moon face. … People were starting to say, like is your whole life okay? It was kind of insulting. And then I got the big belly, and it just got bigger and bigger, and within 3 weeks I had gained 25lbs.

Darby noted that, in the fullness of her busy life, it was easy to explain away her symptoms:

I didn’t acknowledge what was going on it, I just didn’t push to find out why. I was always able to find a reason in my own brain or my own thinking as to all, you know. You know, I’m just I’m working too much and this will pass, and then it’ll get better. Or, you know, when I was falling down for no reason, it was like oh man you just got to pay more attention. All right, you know, I need to eat better because I’m not, you know, exercising. When I was gaining the weight and went to weight watchers and some reason the weight wasn’t coming off. … And I’m thinking, I’m doing all the right stuff.

Similarly, Franny described how she perceived her symptoms to be related to anxiety:

Oh, it’s just anxiety you’re always… It’s like the palpitations Oh, it’s just you’re nervous about something. … I guess I just… in my case, like I haven’t… maybe they caught it so soon enough that, like I haven’t really got to the point where like I’m I’m feeling a lot of symptoms?

Experienced weight stigma

Participants described numerous experiences of weight stigma in healthcare while seeking a diagnosis. Invalidation occurred when patients’ personal accounts of their illness were dismissed or not taken seriously, as described in the Lack of Patient Centered Care sub-themes. While many participant experiences of medical gaslighting can also be regarded as experiences of weight stigma, these themes were differentiated by whether or not participants reported they were dismissed or silenced, consistent with the definition of gaslighting [ 21 ].

Participants contributed their negative experiences, at least in part, to their weight. Participant’s felt like there was a significant difference in how they were treated by practitioners before the onset of their Cushing’s symptoms. Christy contrasted her experiences in healthcare pre- and post- Cushing’s: “When I went to the doctor and I was concerned about something as a kid , nobody ever doubted me like. And yeah , since then … people in general just don’t get [taken] seriously looking the way that I do. And don’t respect me as much it seems.” Although Christy spoke of “ people in general ,” this sentiment included her primary healthcare provider. Similarly, Honey described a perceived change in her relationship with her primary care provider pre- and post- Cushing’s onset and felt that her weight contributed to this change. She described her once positive relationship as one that is now associated with hurt:

Prior to Cushing’s my doctor was very forthcoming. I would tell him what I needed if I needed, felt I needed blood work, or felt I needed anything, or suggested that I…. maybe he’s not the one to help me that I need to see a specialist he would send me on to that specialist. So, yes, I always felt hurt by him.

Abby summarized participants’ experiences when she said: “ Judging books by covers that’s , that’s what the healthcare system seems to do and I do feel that , like some of my treatment was definitely due to my body [size] and what , what they preconceived that I was a fat person , so it was my fault.” Franny described having requested her entire medical file and that seeing herself repeatedly referred to as a “ morbidly obese female ” in emails and other communication had a negative impact on her body image and self-esteem.

Diagnosis as a golden ticket

Post-diagnosis, participants experienced a profound sense of relief and validation, perceived themselves to be lucky to have received a diagnosis, and were thankful for the subsequent treatment they received. Bethany said: “ once you get a diagnosis , it doesn’t matter what the diagnosis is , you’ve got a diagnosis and now we work towards that. Let’s correct it ”. Christy felt like “ Having that diagnosis under my belt was like a golden ticket … everything was easier .” Abby declared that the doctor who officially diagnosed her saved her life: “She had taken the time to like , say I believe you. Instead of just seeing a fat person and blaming it on me , which is really what the healthcare system does. Really it ruins people.” After waiting three years for a diagnosis, Darby stated that she felt “ very lucky ” and said:

From when my doctor said to me ‘I think it’s Cushing’s’ to when the actual diagnosis was, it was fast. It was weeks. It was, it was very, very quick. …Once we actually knew what it was to actually being able to have the surgery to have the tumor removed and start reversing the process of what was going on with my body. So. I was very lucky.

In hindsight, participants noticed there was a difference in how they were treated by healthcare professionals pre- and post-diagnosis. Abby said: “ I firmly believe that there is a correlation there between how I was treated before , and then how I was treated after.” She elaborated to say that: “ people have to believe me now , because a specialist has said , ‘This is what I have , and you may not understand it , but I do’.” Emily noted that “ after I got the diagnosis my family doctor was very , very open , and caring with moving forward. And he commended me for pushing and knowing that things were wrong , and he was really good about it , and he apologised that it took long to get figured out .” Honey also noted” “ I’d have to say like during the diagnosis , not great , but since I’ve had my pituitary tumor removed great , the aftercare has been fantastic.”

Across seven semi-structured interviews with women with endogenous Cushing’s, the results of our preliminary inquiry into the lived experience of patients suggest that both patients and providers struggle to understand the progressive and individualized presentation of Cushing’s. This struggle can come, unintentionally, at the expense of patient centered care in the form of provider miscommunication, medical gaslighting, and weight stigma. Our results also suggest that diagnosis is viewed by patients as an important turning point for both effective treatment as well as reduced stigma.

Overall, the results of our study highlight the importance of patient centered care. Participants reported miscommunication, invalidation, weight stigma, and gaslighting in their healthcare encounters, all of which are contrary to the goals of patient centered communication [ 11 , 12 ]. These findings are consistent with previous research identifying structural, educational, and resourcing barriers to patient centered communication [ 11 , 27 ]. These barriers include understaffing, specific healthcare settings (i.e., acute care), limited time, insufficient communication, lack of training in patient centered communication, and inadequate patient education [ 11 , 27 ]. Given that patient engagement is associated with improved outcomes, a better understanding of their condition, and more awareness of resources, [ 27 ] identifying strategies to enhance patient centered communication are of critical importance. Researchers have identified staffing longevity as associated with greater engagement and less burnout [ 27 ] and have identified provider training and professional development as significant in the implementation of patient centered communication [ 12 ]. Thus, in addition to patient centered communication skills, providers require knowledge of weight stigma and Cushing’s as well as appropriately resourced work environments to enact patient-centered care. However, an important responsibility falls to broader healthcare systems to empower providers by providing comprehensive training, addressing provider burnout, and changing healthcare culture and systems to allow for increased engagement in patient centered communication [ 12 ].

The rare occurrence [ 6 , 7 ] and non-specific presentation [ 8 ] of endogenous Cushing’s is a unique barrier to patient centered communication. Participants in this study recognized the impact that the rare occurrence of their disease had on their provider’s misunderstanding of their symptoms. Bethany noted one interaction whereby her primary care provider mentioned being told in medical school that they would never see a case of Cushing’s in their careers. However, knowledge of Cushing’s is a pre-requisite for early detection [ 6 ]. Such knowledge is important, as overlooking endogenous Cushing’s is associated with increased mortality rates due to hypertension, metabolic diseases, and bone-related complications, with continued cardiovascular risk persisting after treatment [ 8 ].

An additional barrier to patient centered care highlighted in our results is weight stigma. Our findings are consistent with previous qualitative research on experienced weight stigma in healthcare contexts [ 28 , 29 , 30 , 31 ]. In previous research, patients have consistently reported the attribution of presenting concerns by healthcare providers to weight without a full exploration of the issue as well as poor verbal and non-verbal communication [ 28 , 29 , 30 , 31 ]. Such experiences with poor quality communication and stigmatization from healthcare providers are associated with subsequent patient healthcare delay and avoidance, [ 15 , 17 ] and may contribute to increased internalization of weight stigma [ 32 ]. Our results highlight that, for patients with endogenous Cushing’s, weight stigma may be a contributing factor in the consistently reported delays to diagnosis, [ 6 , 7 ] due to stereotyped assumptions about weight gain coupled with a lack of knowledge about Cushing’s, among providers as well as patients. Although participants in this study reported symptoms beyond weight gain, they perceived their weight as having an impact on their healthcare encounters.

Our findings related to weight stigma highlight the potential harm of weight- and appearance-focused sociocultural discourses [ 21 , 22 ] on Cushing’s-related healthcare. For patients, internalization of these discourses may have contributed to the extent to which they understood symptoms such as fatigue and muscle weakening as caused by their weight gain. For providers, this may have contributed to their clinical impressions and decision-making. Researchers have previously identified weight and appearance discourses as contributing to a weight-centric practice paradigm, whereby higher weights are regarded as within individual control as well as the cause of poor health [ 33 ]. Within a weight-centric paradigm, recommending weight loss is regarded as an effective health-promoting solution and failure to achieve or sustain weight loss is regarded as the fault of the patient. Criticisms of the unintended consequences of a weight-centric paradigm have prompted researchers to call for a weight-neutral approach to healthcare that recognizes and addresses weight stigma, assesses cardiometabolic and lifestyle health risks in patients across the weight spectrum, and seeks to promote the health of patients independent of changes in weight status [ 33 ].

This research was conducted as a preliminary inquiry into the lived experience of patients with Cushing’s, given the lack of such research in the literature. Our findings suggest that patient experiences are an important, but unexplored, line of inquiry and that more research is needed in this area. Given that lived experiences may differ across contexts and may vary by an individual’s culture, race, relationship status, and/or geographical location, further research is needed with larger samples to elucidate the potential impact of provider miscommunication, medical gaslighting, and weight stigma on the experiences of patients with Cushing’s throughout the diagnostic and treatment process. Future research examining Cushing’s-related healthcare experiences access gender and racial identities is also needed to fully understand the broad experiences of patients with this disease.

Limitations

To our knowledge, this is the second study to examine the lived experiences of people with Cushing’s, with only one other qualitative study examining the impact of Cushing’s on quality of life, published in Italian [ 34 ]. However, this is the first study to examine patients’ lived experiences in healthcare, as this previously published Italian study examined patients’ perceived quality of life. Despite this novelty and strength, this research is not without its limitations. First, as only seven women with Cushing’s were recruited, this preliminary inquiry is limited by sample size. Thus, the results are not generalizable to all women with Cushing’s, their healthcare providers, or their experiences in healthcare. Second, given that our participants were recruited from an online support group, their reported experiences may be different from those who have not sought such support from the online patient community. Third, our sample was limited in demographics. All participants identified as white women but did represent a broad range in age and socioeconomic status. Finally, as our participants reported a delay to diagnosis of 1.5 to 3 years, their experiences may not represent those of individuals who experienced a longer delay to diagnosis.

The findings of this research indicate that a lack of patient centered care may have an impact on the recognition and referral/diagnosis of Cushing’s in primary healthcare settings. Our results highlight an important area of inquiry that warrants further attention. Given the small sample size, further research is needed to clarify and to expand on these findings. However, these results highlight the importance of patient centered care and curious investigation into the causes of unexpected and uncontrollable weight gain in patient encounters.

Data availability

Data for this study is available on reasonable request to the corresponding author.

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SCJ was supported by a Jamie Cassels Undergraduate Research Award.

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SCJ and SN conceptualized the study. All authors contributed to the study design and SCJ conducted all interviews and transcriptions. Data analysis was conducted by SCJ and SN with support from JFS. All authors contributed to manuscript preparation.

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Jones, S.C., Nutter, S. & Saunders, J.F. “The healthcare system did fail me repeatedly”: a qualitative study on experiences of healthcare among Canadian women with Cushing’s syndrome. BMC Prim. Care 25 , 329 (2024). https://doi.org/10.1186/s12875-024-02580-5

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The challenges of delivery in pre-hospital emergency medical services ambulances in Iran: a qualitative study

• Rahim Ali Sheikhi   ORCID: orcid.org/0000-0002-2034-8624 1 &
• Mohammad Heidari   ORCID: orcid.org/0000-0001-7767-5645 1  

BMC Emergency Medicine volume  24 , Article number:  156 ( 2024 ) Cite this article

Metrics details

Although unplanned deliveries in ambulances are uncommon, Emergency Medical Services (EMS) providers may encounter this situation before reaching the hospital. This research aims to gather insights from Emergency Medical Technicians (EMTs), midwives, and expectant mothers to examine the causes of giving birth in ambulances and the challenges EMTs, pregnant women, and midwives face during delivery.

A qualitative study was conducted, and 28 EMT s , midwives, and pregnant women who had experience with pre-hospital births in the ambulance were interviewed. Data were analyzed using thematic content analysis. The MAXQDA/10 software was employed for data analysis and code extraction.

The analysis of the interviews revealed two main categories: factors that cause delivery in the ambulance and its challenges. The factors include cultural problems, weak management, and inaccessibility to facilities. The challenges consist of fear and anxiety, native culture, and lack of resources.

Conclusions

Several approaches should be implemented to reduce the number of births in ambulances and Pre-hospital Emergency Medical Services (PEMS). These include long-term community cultural activities, public education, awareness campaigns, education and follow-up for pregnant women, and improved accessibility to health facilities. Additionally, EMT S need to receive proper education and training for ambulance deliveries. Enhancing ambulance services and supporting EMTs in dealing with litigation claims are also critical.

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Introduction

Working as an EMT in a PEMS environment means encountering patients in various scenarios. EMS providers must always be prepared to handle diverse and challenging issues [ 1 ]. One of these situations is encountering a pregnant mother near delivery, so the EMTs may have to assist with the birth before reaching the mother to a health center with delivery facilities [ 2 , 3 ]. This situation can be considered a stressful challenge for EMTs because childbirth is a high-risk and infrequent medical condition, and the health of the mother and neonate may be at risk [ 3 ].

Maternal and neonatal mortality ratio is one of the most important indicators of a country’s development [ 4 ]. On the other hand, an unplanned birth in the ambulance increases the risk of danger to the lives of the mother due to complications such as excessive bleeding, retained placenta, shock, and the potential need for a blood transfusion for the mother, in addition, there are risks for the neonate such as hypothermia, hypoxia, umbilical cord entanglement around the fetal neck, and the need for neonatal resuscitation [ 5 , 6 ].

McLelland et al. have shown that maternal and neonatal outcomes after unplanned births before arrival to hospitals are significantly poorer than planned home or hospital births [ 7 ]. In this context, Svensson and Fridlund stated that when delivery in an ambulance is unavoidable, EMS providers should be skilled in delivery management and maternal and newborn health care [ 8 ].

Despite this, in Iran, education and training about delivering neonates were not formally included in the EMTs’ curriculum, and assisting with childbirth is not defined as part of their duties. Therefore, EMTs are not trained to manage women with unplanned childbirth situations before they arrive at hospitals or equipped health centers [ 7 ].

Most EMTs in Iran are hired from emergency medicine graduates with either associate or bachelor’s degrees. However, individuals with bachelor’s degrees in nursing, associate or bachelor’s degrees in operating room technology, and bachelor’s degrees in anesthesiology are also hired due to staff shortages. Regrettably, the categorization of EMS employees into basic, intermediate and paramedic levels has not been implemented in Iran. Despite distinct job descriptions for these three levels, the lack of categorization results in all employees having the same job description. In addition to providing first aid, all employees can administer intravenous fluids and medication in the ambulance, following their diagnosis or consultation with the dispatch physicians under emergency protocols. Employed staffs do not get specific university training in mother and baby care during childbirth. They usually undergo brief, theoretical training. Also, the PEMS conducts in-service training based on identified needs, typically not including mother and baby care during ambulance delivery [ 9 ].

While a few women have been employed in the country’s capital in recent years, most pre-hospital emergency workers are men [ 9 ], and two male EMTs in each ambulance provide emergency medical care to patients on each mission [ 10 ]. In some areas, when there are a lot of missions involving pregnant women, EMTs may need to bring a midwife from health centers based on local guidelines. However, in many cases, childbirth happens without a midwife present in the ambulance and is instead managed by two male technicians. This is often because the midwife is on another mission or there are no local guidelines mandating the midwife’s presence [ 9 , 10 ]. Giving birth in the ambulance with the assistance of male technicians causes significant shame and embarrassment for Muslim women, particularly those residing in remote rural and nomadic areas [ 11 ]. Several studies have investigated the challenges of childbirth before reaching medical centers. However, this particular study focuses on specific aspects. These include the challenges faced by emergency technicians who do not have sufficient training for such situations, the cultural challenges of delivering in ambulances for pregnant women in the unique cultural context of Iran, especially in the presence or with the assistance of male technicians, and the challenges of giving birth in limited ambulance space during long journeys before reaching medical facilities. This study aims to gather insights from EMTs, midwives, and expectant mothers to examine the causes of giving birth in ambulances and the challenges EMTs, pregnant women, and midwives face during delivery.

Research design

This study used a qualitative approach to investigate the causes of giving birth in ambulances and the experiences of EMTs, midwives, and pregnant mothers who delivered babies in ambulances. The researchers gathered data through semi-structured interviews to gain insight into their situations [ 12 , 13 ]. Following this, the data was analyzed using a content analysis approach.

Participants

The participants of this study consisted of the 28 EMT s and midwives who had experience helping to give birth in the ambulance and the women who had given birth in the ambulance. The authors contacted EMT s as well as pregnant mothers who had given birth in the ambulance and invited those who were willing to be interviewed for face-to-face or telephone interviews. In total, 28 people showed interest in participating, including 13 EMTs, 8 midwives, and seven mothers who gave birth in the ambulance. All EMTs had assisted in at least one delivery in the ambulance (Table  1 ).

Data collection

Before the interview, the participants received detailed information about the interview and the study’s objectives. They were assured about the confidentiality of the information and informed that their participation in the study was entirely voluntary. In addition, they were told that their interview would be recorded and that they could cancel it at any time. The data for this study was collected through semi-structured interviews. Thirteen EMTs, eight midwives with experience in ambulance deliveries, and seven pregnant women who delivered in the ambulance were interviewed. Due to the long distances to the workplaces of some study participants and for their convenience, the interviews were conducted in separate rooms at the workplaces of EMTs and midwives. Four pregnant women were interviewed in their homes, and three were interviewed by telephone. All interviews were conducted during the morning work shift to better reach the participants from May 2023 to June 2023. An interview guide with open-ended questions was used, and the interviews lasted 45 to 75 min. All interviews were recorded using a voice recorder and later transcribed by the authors (Table  2 ).

Because many of the women who gave birth in the ambulance resided in remote areas, it was challenging to interview them. Additionally, many of these women were illiterate or had limited education, making it difficult for the interviewer to rely solely on open-ended questions. As a result, the interviewer had to ask more direct questions about the study’s objectives, potentially leading to unintended information bias [ 13 ].

Data analysis

The content analysis approach was used to analyze data related to the study. An inductive approach means that the author avoided using predetermined categories; instead, the authors searched for similar words and expressions and the same meaning in the typed texts of the participant’s interview and formed categories. In the initial analysis stage, the text was read several times to find meaning units corresponding to the study targets. Then, the meaning units were condensed, and condensed units were coded [ 12 , 14 , 15 ]. Granheim et al. state that categories can be formed from meaning units to be compared or compiled into broader categories or subgroups [ 12 ]. In this study, the codes were compared and categorized in two stages until finally, two main categories were obtained, and then each category was divided into three sub-categories, which highlighted the main content of the interviews. Also, for data analysis using MAXQDA/10 software.

Ethical considerations

The present study was approved by the Ethical Committee Medical Sciences University of Shahrekord (Ethics code: IR.SKUMS.REC.1400.244). The participants were given adequate information about the nature of the study, and informed consent has been obtained from the participants, their parents and legally authorized representatives in this study. They had the right to ask questions about the ambiguities and tried to clarify them as much as possible. They were assured that the obtained information would be completely confidential and used only for this research. Also, the findings were published so that none of the participants could be identified. Also, participants had the right to withdraw from the study at any time [ 16 ].

Twenty-eight people participated in this study. 13 participants were EMTs, 8 were midwives, and 7 were mothers who gave birth in ambulances. After the content analysis, the results were divided into two general categories of causes leading to giving birth in an ambulance and challenges. Then, each category was divided into three subcategories. The causes of childbirth in ambulances were split into 3 subcategories: local culture, inaccessibility, and weak managers. Also, the challenges of giving birth in ambulances are divided into three subcategories: fear and anxiety, people’s culture, and ambulance and equipment. The continuous text describes the categories with clarifying participant quotes (Fig.  1 ).

The challenge of delivery in ambulance

The causes leading to giving birth in ambulance

Local culture.

Culture can be considered a way to live, including ethnicity and race, the behavioral response that is acquired over time, beliefs, attitudes, values, customs, norms, and taboos that are accepted by a society of people [ 17 ].

All participants in the study highlighted the issue of illiteracy among women. They noted that many women in remote and nomadic areas are unable to read or write due to the lack of accessible schools. Additionally, there is a cultural disregard for girls’ education in these regions, leading to early marriage and high dropout rates for girls after elementary school. As a result, many women have limited literacy skills, impacting their ability to seek proper prenatal care and timely medical attention during childbirth. Due to their low literacy levels, pregnant women often rely on traditional practices, rituals, and the advice of older women instead of taking appropriate health actions. One of the respondents quoted:

“They are illiterate and do not have enough knowledge about the signs of childbirth. They do not listen to our advice and are more influenced by the advice of elders , especially mothers-in-law”. (P 16 ) .

Obeying the senior women

In nomadic and rural areas, special respect is given to older women, such as mothers-in-law or senior women, and pregnant women usually consider the advice of these persons in the community rather than health center staff. These uneducated and untrained women provide recommendations based on their own or others’ birth experiences, which may lead to delays in accessing the birthing center and increase the risks for women and newborns.

“My mother-in-law told me that if your back , arms , legs , and abdomen have pain at the same time , you are near to giving birth. Now that only your abdomen becomes loose and tight , you are not about to give birth; that’s why I called the 115 late” (P 23 ) .

The heavy activity of pregnant women

Pregnant women in low socio-economic or rural areas have reported that they often engage in heavy physical activity, similar to non-pregnant women, right up until the end of their pregnancies. In many cases, labor pains begin while they are doing physical activity such as farming, tending to sheep, milking cows and sheep, spinning wool, doing housework, and other physically demanding tasks. It has been observed that physical activity and movement can potentially help in advancing childbirth, especially in women who have had multiple pregnancies.

“I was milking the sheep when my labor pain started. At first , I didn’t think it was labor pain , but when it happened again , I realized it was labor pain.“ (P 25 ) .

Inaccessibility

Remoteness and difficult geography.

It was noted that most ambulance births occur in women living in remote areas. As a result, it can take 6 to 8 h from calling PEMS for the ambulance to arrive and transport the expectant mother to the nearest equipped birthing center. This delay is often due to the long distance that the ambulance has to cover, especially when the call is made with little time left until the birth.

Apart from the long distances to health centers, difficult geography is another issue. Most villages do not have proper access roads, and the existing roads pass through hills and mountains. The roads are in very poor condition, and in the rainy season, especially in winter, it becomes very difficult and sometimes impossible to pass by ambulance due to the muddy pathways. In some areas, EMTs must walk for at least half an hour to reach pregnant women. Sometimes, donkeys and mules are used to transport pregnant women to the ambulance. (Fig.  2 )

Remoteness and difficult geography (Chaharmahal and Bakhtiari province, Iran)

“After driving the ambulance for three hours , we had to walk the rest of the way. It took us about 45 minutes to reach the pregnant mother’s residence.” (P 3 ) . We departed from the emergency station at 10:00 PM and transported the mother and her newborn to the hospital by 5:00 AM. We traversed a section of the road that was inaccessible to the ambulance , so we used a donkey to carry the pregnant mother to the ambulance.“ (P 7 ) .

Some pregnant women may not need an emergency visit to the hospital, depending on their medical condition, but according to the advice of the midwives, it is recommended to stay near the birthing centers for a few days. However, due to poverty, some refuse to do so. Some cannot even afford to pay for car rentals to transport them to medical centers. As a result, they prefer to wait until the last moment and then call 115 to be taken to the hospital by ambulance because of the free pre-hospital emergency ambulance.

“We encountered a situation where a pregnant woman was high risk , but it wasn’t necessary for her to be treated as an emergency case at that time. However , every time we advised her to see a gynecologist , she would respond that she didn’t have the money to go.“ (P 14 ) .

Weak managers

Inefficiency of the health system.

Insufficient healthcare facilities in remote areas make it challenging for people to access essential services. The government finds it cost-prohibitive to establish health centers in these areas. Additionally, inadequate education, poor management, and irregular prenatal services provided by midwives in these health centers have contributed to a rise in ambulance births. Mismanagement by health service managers has caused some midwives to deliver improper care to pregnant women in remote areas.

“If midwives in health centers have enough responsibility , the ambulance will have less childbirth. Midwives should encourage pregnant mothers , especially those at high risk , to leave remote and geographically challenging areas and go to cities with birthing centers at the first signs of giving birth. However , sometimes they neglect their duty because their supervision is not strict enough.“ (P 17 ) .

Inadequate resource

Health officials can take actions such as providing residential places near well-equipped health centers and encouraging high-risk or pregnant women to stay there for a few days. This will allow these women to be specially monitored and evaluated by midwives. In case of labor pains, they can be immediately transferred to an equipped center. However, not all centers have the resources or efficient management to support this. Another common issue is the shortage of professional midwives in remote areas, as they are not satisfied to serve in such areas due to a lack of facilities.

“ Nobody is willing to work here because we lack facilities. Those who do work here must be away from their families for a long time. There is always a shortage of midwives and nurses , which means that pregnant women in deprived areas are not receiving proper care.“ (P 19 ) .

The challenge of giving birth in ambulance

Fear and anxiety.

The study participants most commonly cited fear and anxiety as their primary emotions. The reasons for this can be divided into three subcategories, which are explained below:

Lack of confidence to manage delivery

The unexpected event of giving birth in an ambulance can be a significant and uncommon occurrence for emergency medical staff. Many of them lack experience in this area, making it a high-risk situation for both the mother and the baby. The limited clinical experience and education among EMTs can lead to a lack of confidence in managing this situation properly, causing fear and anxiety. As a result, EMTs may question their ability to keep the mother and baby healthy and safely transport them to the hospital.

“It was 2 or 3 a.m. , and the mother became dystocia during childbirth in the ambulance. It was terrible. The mother was agitated , her relative was screaming , and I was praying that nothing would happen. I think I lost ten years of my life because of fear and stress that night.“ (P 18 ) .

The process of giving birth in the ambulance is not included in the educational curriculum, as it is not considered a part of EMTs’ duties; training courses typically do not priorities childbirth in ambulance scenarios. Which can lead to poor academic performance, lack of confidence, and feelings of fear, stress, and anxiety among EMS providers.

“During our time at university , we received no training at all. They didn’t even let us practice with mannequins. They only gave us a brief theoretical explanation. We are only relying on the experiences of others.“ (P 1 ) .

Fear of litigation

Childbirth is a high-risk medical condition. Even when the pregnant mother is in the hospital with gynecologists, experienced midwives, and all necessary equipment and medicines at her bedside, there is still a possibility of endangering the health of the mother and the baby. None of these resources may be available in the ambulance. Additionally, the space in the ambulance is insufficient to give the mother a proper position, perform necessary maneuvers, and use a sterile set. Despite these challenges, a patient’s relative may be present in the ambulance and monitor the staff’s behaviour and performance. If there are any health problems for the mother or the baby, the patient’s family may seek legal action and involve the EMTs in legal challenges and litigation. Also, the hospital staff, when taking the mother and baby from the EMT s , did not consider that before the hospital, the EMTs faced at least two hours over difficult geographical roads and the limitations of giving birth in an ambulance. They report the health problems of the mother and the baby as the shortcomings and negligence of the EMT s and record them in the patient’s file. These may become giving birth-related litigation against EMT s and PEMS later. Therefore, there is always the concern and fear of getting involved in litigations.

“We brought the mother from the top of the mountain; she gave birth on the way. We were on the road for 6 hours. Not the normal road , but the dirt and hard geographical pathway; the fact that we brought the mother and the baby healthy to the hospital and handed them over , was a masterpiece in itself. However , the hospital staff complained that the baby or the mother was not managed properly. They didn’t consider the conditions of the ambulance , the road and the equipment , and they checked the smallest things; often , we were afraid of getting involved in litigations after delivering the mother and baby to the hospital.“ (P 9 ) .

Native culture

Feeling ashamed and embarrassed.

Feelings of shame and embarrassment over giving birth in an ambulance were common among four women who participated in this study. Most of the women, especially those living in rural, nomadic, and remote areas, dislike being naked in the presence of midwives. Having a male attendant on their bed during childbirth is very annoying and embarrassing for them. Many of them ask male EMTs to leave the ambulance during delivery. The presence of male EMTs in the ambulance during childbirth creates a sense of loss of social prestige for male relatives, leading to challenges and conflicts with the patient’s relatives. They usually don’t accept the presence of a man at the bedside unless they feel that the mother’s life and the baby are in danger. EMTs, especially those with less experience, also experience a lot of shame when they attend to women giving birth.

“One of the pregnant woman’s relatives told me , “I don’t want you to stay at the bedside.” She did not allow me to stay in the ambulance and help with the delivery. After the birth , we saw that the umbilical cord was tied with a thread.” (P 10 ) . “In some cases of dystocia , I needed someone’s help , at least to infuse intravenous fluids for the mother. However , male EMTs were prevented from entering by the men who were present , such as the husband , father , or brother of the pregnant woman. There was even conflict at times , with the relatives questioning why a man should be present during the delivery.” (P 17 ) .

Lack of facilities

Non-standard ambulances) low quality ambulances).

The ambulances used in PEMS have limited space and were not designed for giving birth. An ambulance bed is a simple bed designed to move all patients and cannot be changed shape or manoeuvred under challenging births. The space around the bed in the rear cabin of the ambulance is very limited. Along with the pregnant mother, a relative, and at least one EMT are also present, making the space even more limited. There is not even enough space to open the sterile set, which often leads to the procedure being unsterile. Additionally, it is not possible to use warmers and incubators, so the EMTs or midwives have to warm the babies by hugging them. Many interview participants highlighted the lack of security measures for both the mother and the baby when ambulances navigate winding and rough roads. The ambulances are often in poor condition, and travelling on dirt roads leads to dust filling the rear cabin, creating an unclean environment. Additionally, ambulances are sometimes used to transfer pregnant women after transporting traffic accident victims, resulting in a dirty and bloody rear cabin. Due to limited resources, it is impossible to purchase ambulances with more space in the rear cabin; ambulances with a larger space in the rear cabin cannot pass through rough and difficult geographical roads.

“ The space inside the ambulance was very limited. The bed was not suitable for childbirth , so there was no place to open the sterile delivery set. We had to open the set under the patient’s feet or on the relative’s chair. If there was even a slight dystocia , we couldn’t give the women a special position.” (P 14 ) . “The ambulance , used for transporting road accident patients , was filthy with dried blood , creating an unsanitary environment that made us feel sick.“ (P 26 ) .

Inadequate equipment and medicines

Special drugs and equipment are necessary to maintain the health of the mother and baby during and after delivery. However, ten participants in the study mentioned the lack of drugs and equipment in the ambulance. For example, the absence of Syntocinon, a drug that plays a major role in childbirth by increasing uterine contractions and is also used to stop bleeding after delivery, was noted. They also mentioned that some drugs, such as Syntocinon, should be kept in the refrigerator, but sometimes there was not even a simple cooler in the ambulance. Therefore, driving long distances in the summer could cause the drugs to deteriorate.

“Syntocinon should be kept in the refrigerator. During hot seasons , when we had to travel long distances to reach pregnant women , the medicine was kept outside the refrigerator for extended periods. Sometimes , there wasn’t even a cold box in the ambulance.“ (P 3 ) . “The ambulances were not equipped. I remember when the ambulance didn’t even have an intravenous fluid stand. Many times , we did not have enough sterile sets to give birth.” (P 11 ) .

After analyzing the data, two general categories were formed, including the factors that cause delivery in ambulances and the challenges of delivery in ambulances. Three themes were formed in each category: local culture, inaccessibility, weak managers in the first category, fear and anxiety, native culture, and lack of resources in the second.

The study results indicated that local culture significantly influences pregnant women who delay seeking timely care at hospitals or equipped health centers for delivery. In rural, nomadic, and remote areas, it is common for girls to marry at a young age. In this culture, the education of girls is not prioritised as much as their early marriage, leading to many being illiterate or having limited literacy skills. This lack of education may be the primary reason for the delay in seeking skilled care at equipped centers. Sarker’s et al. qualitative study highlighted the impact of women’s illiteracy on home delivery, emphasizing that illiteracy is a significant factor causing women to avoid seeking delivery care at hospitals or equipped centers [ 18 ]. Other studies have also shown that illiterate women or those with low levels of education may be unaware of the risks associated with childbirth, leading them to prefer delivering at home [ 19 , 20 ].

In rural and native areas, there is a harmful practice of obeying senior women such as mothers-in-law. These women, who are often illiterate and untrained, give advice based on their own or others’ experiences of childbirth. This can lead to delayed timely care-seeking and put the pregnant mother and baby at greater risk. In some cases, pregnant women in rural areas give birth with the assistance of mothers-in-law or other senior women, leading to delays in seeking care from equipped health centers. This delay may be due to the belief that nothing will happen if they don’t seek timely medical assistance and that they can give birth at home without complications. Sychareun et al. demonstrated in a study that sometimes women and their husbands preferred to give birth at a hospital or health center but were advised by seniors, especially the mother and mother-in-law, to give birth at home based on their own childbirth experiences [ 21 ].

The strenuous activities performed by pregnant women, such as farming and animal husbandry in rural and nomadic areas, may lead to earlier delivery times. This can result in delays in seeking timely medical care and giving birth in the ambulance. Goffinet’s and Cooke study indicated that although employed women with normal activity have a lower risk of preterm birth, working more than 42 h a week and standing for more than 6 h a day can increase the risk of preterm labor [ 22 ].

The main problem is the lack of access to delivery services because of poverty, limited transportation, long distances, challenging geography, and poor roads, especially during the rainy season. Many people living in remote areas cannot afford transportation to nearby cities to receive necessary pregnancy care, medical tests, medications, or hospitalization. As a result, they opt to give birth at home or delay seeking help until the last minute and then call for transfer by PEMS. Damaceno et al. showed that women are more likely to give birth outside well-equipped delivery centers due to socioeconomic conditions and geographical distance. They found a significant correlation between the travel time to health-equipped centers and the incidence of out-of-hospital childbirth [ 23 ]. Hirose also mentioned that an increased distance from hospitals and other childbirth facilities leads to longer departure delays. Additionally, poverty causes delays in the decision to move to the hospital when delivery symptoms are apparent [ 11 ].

Contrary to the findings of this study, Loughney et al. believed that living near a hospital may increase the risk of delivery before arrival. He says: Some women who live near the hospital may mistakenly think they can reach the delivery suite quickly and therefore postpone going to the hospital until the last minute and cause delivery before arriving [ 24 ].

Another reason for the increased number of births in ambulances can be the incompetency of health managers. Establishing health centers in remote areas may not be cost-effective, and the government’s economic situation does not allow for setting up such centers. The lack of facilities and necessary support in remote areas also causes a shortage of professional staff, as they are not satisfied to serve in such areas. In addition, the irresponsibility of midwives, irregular services during pregnancy for women settling in remote areas, poor management, weak education, and inadequate equipment can endanger the health of the mother and baby and also increase childbirth in ambulances. In another study by Khatri et al. the lack of facilities and resources and the unavailability of midwives were the barriers for pregnant women to use equipped centers for childbirth. Khatri et al. mentioned the midwife shortage and the lack of expected support from existing midwives as barriers to providing permanent services [ 25 ].

The EMTs experienced a great deal of fear and anxiety while helping the mothers give birth in the ambulance. This was due to the possibility of endangering the health of the mother or the baby, as well as the unknown and unexpected nature of the event. They had not been properly educated and trained for such deliveries and, as a result, lacked the confidence to handle the situation, which contributed to their feelings of fear and anxiety. The results of Persson et al. study showed that confidence in one’s ability creates a feeling of security. In this study, she states that to be safe and secure, the nurses who work in ambulances must be educated about delivery in ambulances [ 2 ]. Also, Norden et al. emphasized that staff should receive practical and theoretical training, such as dealing with birth before arrival at the hospital [ 26 ]. Persson et al. argued that the knowledge of EMTs about the risk of complications, such as massive bleeding of the mother, asphyxia of the newborn, stillbirth, and prematurity of the neonate, causes concern, nervousness, and anxiety [ 2 ].

An additional source of fear and anxiety identified in this study was the concern about becoming entangled in legal disputes and litigation due to the possibility of receiving complaints from patients, their relatives, or hospital staff against EMS providers. When a patient is transported by ambulance, a relative is usually present. This means that the behaviour and performance of the medical personnel are being observed. If an unfortunate and unexpected event occurs for the mother or the baby, there is a possibility that the patient’s family will turn to legal authorities and involve the ambulance staff in legal conflicts and litigation. Also, when the mother and her baby are admitted, the hospital staff records all of the problems in the patient files as shortcomings and negligence of the EMTs; therefore, there is the probability of getting involved in litigation later. The research conducted by Afshari et al. revealed that EMS staff could face legal prosecution for their practices. The study emphasized that the possibility of litigation and the need to attend legal proceedings are highly stressful for EMS providers [ 27 ]. Colwell et al. identified legal prosecution as a significant source of stress for EMTs. They reported that complaints against EMS were primarily from patients, healthcare providers, and patients’ relatives. Reasons for these complaints included lack of skills, transfer-related problems, and lost personal belongings [ 28 ]. Dobbie and Cooke mentioned that the family of an obstetric case claimed that the lack of equipment to manage the preterm baby in the ambulance led to the development of cerebral palsy and blindness [ 29 ].

Pregnant women often feel shame and embarrassment when male EMTs are present during delivery. This is especially true for women in rural and remote areas who may feel uncomfortable being naked in front of male EMTs. Even inexperienced EMTs may feel the same way. While the discomfort lessens with more experience, it doesn’t completely disappear. Sychareun et al. found that most pregnant women felt shy when a male was present during delivery at the health facility [ 21 ]. Sarker et al. also found similar results to this study. The results indicated that people believed that if their women gave birth outside of the home and in the presence of a male physician, their social status and prestige would diminish. They described that women in remote and rural areas preferred to give birth at home because they did not want their genitalia to be exposed to men [ 18 ].

Based on participant feedback, the challenges of giving birth care in ambulances include limited space, dilapidated and inadequate delivery beds, poor ventilation in both warm and cold seasons, dust entering the rear cabin and contaminating the environment, and cleanliness issues due to transporting multiple patients. Additionally, there are concerns about the unavailability of necessary equipment and medications. Regarding the space of the ambulance, Colwell et al. stated that the limited space of the ambulance, its movement at high speed, and the lack of wearing the seat belt due to medical care cause imbalance and disruption in dealing with critical situations [ 28 ]. Suserud et al. pointed out that insufficient equipment and limited space in ambulances may lead to stress among ambulance staff [ 30 ].

The main limitation of this study was the lack of access to women giving birth in the ambulances. This was because few women who had given birth in the ambulance in nearby cities and were more accessible did not agree to be interviewed, and the phone numbers registered in the system from women living in distant areas belonged to their husbands. Therefore, it was difficult to communicate with them. Despite trying to communicate with them through cooperation with midwives in health centers, most women were unwilling to participate in the interview. After much effort, only seven people agreed to be interviewed, four of whom were illiterate, and three had low literacy. Face-to-face interviews were conducted with 4 people at their homes, and telephone interviews with 3 people, but the interviews were not satisfactory due to low literacy.

This study demonstrates that factors such as cultural issues, illiteracy, poverty, remote and challenging geography, lack of accessible health facilities and inefficiencies in the healthcare system can lead to deliveries occurring in ambulances before reaching hospitals. To reduce the incidence of ambulance deliveries and minimize health risks for both the mother and the baby, the involvement and collaboration of the government and community are crucial. Addressing cultural misconceptions and transforming local practices require long-term planning and stakeholder participation. Improving literacy and educating women about prenatal care can be beneficial. Health authorities should also focus on enhancing access to prenatal care, particularly in remote areas.

The challenges of giving birth in ambulances highlight the unpreparedness of the health system and PEMS providers for such situations. Since giving birth in ambulances poses potential high-risk events for both mothers and babies, must incorporate training workshops on caring for mothers during labor into the curriculum of all disciplines that may be employed in PEMS. These workshops should cover natural births and complicated births. These include breech, prolapsed umbilical cord, shoulder dystocia, and maternal bleeding. Training on newborn cardiopulmonary resuscitation after birth should also be included. These workshops should be run by experienced midwives and gynecologists. They should include watching real videos and practicing on mannequins. To enhance the skills in providing care for mothers and babies during delivery in ambulances, the PEMS should periodically conduct these workshops as part of in-service training. Additionally, providing ambulances with the necessary equipment, facilities, and medicines for childbirth and continuous training and support for EMS providers against litigation claims is essential. Furthermore, planning for the presence of a midwife in all missions related to pregnant women can help alleviate personnel fears and anxiety.

Data availability

The datasets generated in the current study are available from the corresponding author upon reasonable request.

Abbreviations

Emergency Medical Services

Emergency Medical Technicians

Pre-hospital Emergency Medical Services

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Acknowledgements

This study is related to a research design approved and financially supported by the research and technology deputy of the Medical Sciences University of Shahrekord (Grant No. 5966). I express my deep gratitude to the respected Deputy of Research and Technology of Shahrekord University of Medical Sciences and all participants who assisted us in this research work, without whom the study would not have been possible.

The project was financially supported by Shahrekord University of Medical Sciences, Shahrekord, Iran (Grant No. 5966).

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Sheikhi, R.A., Heidari, M. The challenges of delivery in pre-hospital emergency medical services ambulances in Iran: a qualitative study. BMC Emerg Med 24 , 156 (2024). https://doi.org/10.1186/s12873-024-01073-z

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Qualitative Research: Getting Started

Introduction.

As scientifically trained clinicians, pharmacists may be more familiar and comfortable with the concept of quantitative rather than qualitative research. Quantitative research can be defined as “the means for testing objective theories by examining the relationship among variables which in turn can be measured so that numbered data can be analyzed using statistical procedures”. 1 Pharmacists may have used such methods to carry out audits or surveys within their own practice settings; if so, they may have had a sense of “something missing” from their data. What is missing from quantitative research methods is the voice of the participant. In a quantitative study, large amounts of data can be collected about the number of people who hold certain attitudes toward their health and health care, but what qualitative study tells us is why people have thoughts and feelings that might affect the way they respond to that care and how it is given (in this way, qualitative and quantitative data are frequently complementary). Possibly the most important point about qualitative research is that its practitioners do not seek to generalize their findings to a wider population. Rather, they attempt to find examples of behaviour, to clarify the thoughts and feelings of study participants, and to interpret participants’ experiences of the phenomena of interest, in order to find explanations for human behaviour in a given context.

WHAT IS QUALITATIVE RESEARCH?

Much of the work of clinicians (including pharmacists) takes place within a social, clinical, or interpersonal context where statistical procedures and numeric data may be insufficient to capture how patients and health care professionals feel about patients’ care. Qualitative research involves asking participants about their experiences of things that happen in their lives. It enables researchers to obtain insights into what it feels like to be another person and to understand the world as another experiences it.

Qualitative research was historically employed in fields such as sociology, history, and anthropology. 2 Miles and Huberman 2 said that qualitative data “are a source of well-grounded, rich descriptions and explanations of processes in identifiable local contexts. With qualitative data one can preserve chronological flow, see precisely which events lead to which consequences, and derive fruitful explanations.” Qualitative methods are concerned with how human behaviour can be explained, within the framework of the social structures in which that behaviour takes place. 3 So, in the context of health care, and hospital pharmacy in particular, researchers can, for example, explore how patients feel about their care, about their medicines, or indeed about “being a patient”.

THE IMPORTANCE OF METHODOLOGY

Smith 4 has described methodology as the “explanation of the approach, methods and procedures with some justification for their selection.” It is essential that researchers have robust theories that underpin the way they conduct their research—this is called “methodology”. It is also important for researchers to have a thorough understanding of various methodologies, to ensure alignment between their own positionality (i.e., bias or stance), research questions, and objectives. Clinicians may express reservations about the value or impact of qualitative research, given their perceptions that it is inherently subjective or biased, that it does not seek to be reproducible across different contexts, and that it does not produce generalizable findings. Other clinicians may express nervousness or hesitation about using qualitative methods, claiming that their previous “scientific” training and experience have not prepared them for the ambiguity and interpretative nature of qualitative data analysis. In both cases, these clinicians are depriving themselves of opportunities to understand complex or ambiguous situations, phenomena, or processes in a different way.

Qualitative researchers generally begin their work by recognizing that the position (or world view) of the researcher exerts an enormous influence on the entire research enterprise. Whether explicitly understood and acknowledged or not, this world view shapes the way in which research questions are raised and framed, methods selected, data collected and analyzed, and results reported. 5 A broad range of different methods and methodologies are available within the qualitative tradition, and no single review paper can adequately capture the depth and nuance of these diverse options. Here, given space constraints, we highlight certain options for illustrative purposes only, emphasizing that they are only a sample of what may be available to you as a prospective qualitative researcher. We encourage you to continue your own study of this area to identify methods and methodologies suitable to your questions and needs, beyond those highlighted here.

The following are some of the methodologies commonly used in qualitative research:

• Ethnography generally involves researchers directly observing participants in their natural environments over time. A key feature of ethnography is the fact that natural settings, unadapted for the researchers’ interests, are used. In ethnography, the natural setting or environment is as important as the participants, and such methods have the advantage of explicitly acknowledging that, in the real world, environmental constraints and context influence behaviours and outcomes. 6 An example of ethnographic research in pharmacy might involve observations to determine how pharmacists integrate into family health teams. Such a study would also include collection of documents about participants’ lives from the participants themselves and field notes from the researcher. 7
• Grounded theory, first described by Glaser and Strauss in 1967, 8 is a framework for qualitative research that suggests that theory must derive from data, unlike other forms of research, which suggest that data should be used to test theory. Grounded theory may be particularly valuable when little or nothing is known or understood about a problem, situation, or context, and any attempt to start with a hypothesis or theory would be conjecture at best. 9 An example of the use of grounded theory in hospital pharmacy might be to determine potential roles for pharmacists in a new or underserviced clinical area. As with other qualitative methodologies, grounded theory provides researchers with a process that can be followed to facilitate the conduct of such research. As an example, Thurston and others 10 used constructivist grounded theory to explore the availability of arthritis care among indigenous people of Canada and were able to identify a number of influences on health care for this population.
• Phenomenology attempts to understand problems, ideas, and situations from the perspective of common understanding and experience rather than differences. 10 Phenomenology is about understanding how human beings experience their world. It gives researchers a powerful tool with which to understand subjective experience. In other words, 2 people may have the same diagnosis, with the same treatment prescribed, but the ways in which they experience that diagnosis and treatment will be different, even though they may have some experiences in common. Phenomenology helps researchers to explore those experiences, thoughts, and feelings and helps to elicit the meaning underlying how people behave. As an example, Hancock and others 11 used a phenomenological approach to explore health care professionals’ views of the diagnosis and management of heart failure since publication of an earlier study in 2003. Their findings revealed that barriers to effective treatment for heart failure had not changed in 10 years and provided a new understanding of why this was the case.

ROLE OF THE RESEARCHER

For any researcher, the starting point for research must be articulation of his or her research world view. This core feature of qualitative work is increasingly seen in quantitative research too: the explicit acknowledgement of one’s position, biases, and assumptions, so that readers can better understand the particular researcher. Reflexivity describes the processes whereby the act of engaging in research actually affects the process being studied, calling into question the notion of “detached objectivity”. Here, the researcher’s own subjectivity is as critical to the research process and output as any other variable. Applications of reflexivity may include participant-observer research, where the researcher is actually one of the participants in the process or situation being researched and must then examine it from these divergent perspectives. 12 Some researchers believe that objectivity is a myth and that attempts at impartiality will fail because human beings who happen to be researchers cannot isolate their own backgrounds and interests from the conduct of a study. 5 Rather than aspire to an unachievable goal of “objectivity”, it is better to simply be honest and transparent about one’s own subjectivities, allowing readers to draw their own conclusions about the interpretations that are presented through the research itself. For new (and experienced) qualitative researchers, an important first step is to step back and articulate your own underlying biases and assumptions. The following questions can help to begin this reflection process:

• Why am I interested in this topic? To answer this question, try to identify what is driving your enthusiasm, energy, and interest in researching this subject.
• What do I really think the answer is? Asking this question helps to identify any biases you may have through honest reflection on what you expect to find. You can then “bracket” those assumptions to enable the participants’ voices to be heard.
• What am I getting out of this? In many cases, pressures to publish or “do” research make research nothing more than an employment requirement. How does this affect your interest in the question or its outcomes, or the depth to which you are willing to go to find information?
• What do others in my professional community think of this work—and of me? As a researcher, you will not be operating in a vacuum; you will be part of a complex social and interpersonal world. These external influences will shape your views and expectations of yourself and your work. Acknowledging this influence and its potential effects on personal behaviour will facilitate greater self-scrutiny throughout the research process.

FROM FRAMEWORKS TO METHODS

Qualitative research methodology is not a single method, but instead offers a variety of different choices to researchers, according to specific parameters of topic, research question, participants, and settings. The method is the way you carry out your research within the paradigm of quantitative or qualitative research.

Qualitative research is concerned with participants’ own experiences of a life event, and the aim is to interpret what participants have said in order to explain why they have said it. Thus, methods should be chosen that enable participants to express themselves openly and without constraint. The framework selected by the researcher to conduct the research may direct the project toward specific methods. From among the numerous methods used by qualitative researchers, we outline below the three most frequently encountered.

DATA COLLECTION

Patton 12 has described an interview as “open-ended questions and probes yielding in-depth responses about people’s experiences, perceptions, opinions, feelings, and knowledge. Data consists of verbatim quotations and sufficient content/context to be interpretable”. Researchers may use a structured or unstructured interview approach. Structured interviews rely upon a predetermined list of questions framed algorithmically to guide the interviewer. This approach resists improvisation and following up on hunches, but has the advantage of facilitating consistency between participants. In contrast, unstructured or semistructured interviews may begin with some defined questions, but the interviewer has considerable latitude to adapt questions to the specific direction of responses, in an effort to allow for more intuitive and natural conversations between researchers and participants. Generally, you should continue to interview additional participants until you have saturated your field of interest, i.e., until you are not hearing anything new. The number of participants is therefore dependent on the richness of the data, though Miles and Huberman 2 suggested that more than 15 cases can make analysis complicated and “unwieldy”.

Focus Groups

Patton 12 has described the focus group as a primary means of collecting qualitative data. In essence, focus groups are unstructured interviews with multiple participants, which allow participants and a facilitator to interact freely with one another and to build on ideas and conversation. This method allows for the collection of group-generated data, which can be a challenging experience.

Observations

Patton 12 described observation as a useful tool in both quantitative and qualitative research: “[it involves] descriptions of activities, behaviours, actions, conversations, interpersonal interactions, organization or community processes or any other aspect of observable human experience”. Observation is critical in both interviews and focus groups, as nonalignment between verbal and nonverbal data frequently can be the result of sarcasm, irony, or other conversational techniques that may be confusing or open to interpretation. Observation can also be used as a stand-alone tool for exploring participants’ experiences, whether or not the researcher is a participant in the process.

Selecting the most appropriate and practical method is an important decision and must be taken carefully. Those unfamiliar with qualitative research may assume that “anyone” can interview, observe, or facilitate a focus group; however, it is important to recognize that the quality of data collected through qualitative methods is a direct reflection of the skills and competencies of the researcher. 13 The hardest thing to do during an interview is to sit back and listen to participants. They should be doing most of the talking—it is their perception of their own life-world that the researcher is trying to understand. Sophisticated interpersonal skills are required, in particular the ability to accurately interpret and respond to the nuanced behaviour of participants in various settings. More information about the collection of qualitative data may be found in the “Further Reading” section of this paper.

It is essential that data gathered during interviews, focus groups, and observation sessions are stored in a retrievable format. The most accurate way to do this is by audio-recording (with the participants’ permission). Video-recording may be a useful tool for focus groups, because the body language of group members and how they interact can be missed with audio-recording alone. Recordings should be transcribed verbatim and checked for accuracy against the audio- or video-recording, and all personally identifiable information should be removed from the transcript. You are then ready to start your analysis.

DATA ANALYSIS

Regardless of the research method used, the researcher must try to analyze or make sense of the participants’ narratives. This analysis can be done by coding sections of text, by writing down your thoughts in the margins of transcripts, or by making separate notes about the data collection. Coding is the process by which raw data (e.g., transcripts from interviews and focus groups or field notes from observations) are gradually converted into usable data through the identification of themes, concepts, or ideas that have some connection with each other. It may be that certain words or phrases are used by different participants, and these can be drawn together to allow the researcher an opportunity to focus findings in a more meaningful manner. The researcher will then give the words, phrases, or pieces of text meaningful names that exemplify what the participants are saying. This process is referred to as “theming”. Generating themes in an orderly fashion out of the chaos of transcripts or field notes can be a daunting task, particularly since it may involve many pages of raw data. Fortunately, sophisticated software programs such as NVivo (QSR International Pty Ltd) now exist to support researchers in converting data into themes; familiarization with such software supports is of considerable benefit to researchers and is strongly recommended. Manual coding is possible with small and straightforward data sets, but the management of qualitative data is a complexity unto itself, one that is best addressed through technological and software support.

There is both an art and a science to coding, and the second checking of themes from data is well advised (where feasible) to enhance the face validity of the work and to demonstrate reliability. Further reliability-enhancing mechanisms include “member checking”, where participants are given an opportunity to actually learn about and respond to the researchers’ preliminary analysis and coding of data. Careful documentation of various iterations of “coding trees” is important. These structures allow readers to understand how and why raw data were converted into a theme and what rules the researcher is using to govern inclusion or exclusion of specific data within or from a theme. Coding trees may be produced iteratively: after each interview, the researcher may immediately code and categorize data into themes to facilitate subsequent interviews and allow for probing with subsequent participants as necessary. At the end of the theming process, you will be in a position to tell the participants’ stories illustrated by quotations from your transcripts. For more information on different ways to manage qualitative data, see the “Further Reading” section at the end of this paper.

ETHICAL ISSUES

In most circumstances, qualitative research involves human beings or the things that human beings produce (documents, notes, etc.). As a result, it is essential that such research be undertaken in a manner that places the safety, security, and needs of participants at the forefront. Although interviews, focus groups, and questionnaires may seem innocuous and “less dangerous” than taking blood samples, it is important to recognize that the way participants are represented in research can be significantly damaging. Try to put yourself in the shoes of the potential participants when designing your research and ask yourself these questions:

• Are the requests you are making of potential participants reasonable?
• Are you putting them at unnecessary risk or inconvenience?
• Have you identified and addressed the specific needs of particular groups?

Where possible, attempting anonymization of data is strongly recommended, bearing in mind that true anonymization may be difficult, as participants can sometimes be recognized from their stories. Balancing the responsibility to report findings accurately and honestly with the potential harm to the participants involved can be challenging. Advice on the ethical considerations of research is generally available from research ethics boards and should be actively sought in these challenging situations.

GETTING STARTED

Pharmacists may be hesitant to embark on research involving qualitative methods because of a perceived lack of skills or confidence. Overcoming this barrier is the most important first step, as pharmacists can benefit from inclusion of qualitative methods in their research repertoire. Partnering with others who are more experienced and who can provide mentorship can be a valuable strategy. Reading reports of research studies that have utilized qualitative methods can provide insights and ideas for personal use; such papers are routinely included in traditional databases accessed by pharmacists. Engaging in dialogue with members of a research ethics board who have qualitative expertise can also provide useful assistance, as well as saving time during the ethics review process itself. The references at the end of this paper may provide some additional support to allow you to begin incorporating qualitative methods into your research.

CONCLUSIONS

Qualitative research offers unique opportunities for understanding complex, nuanced situations where interpersonal ambiguity and multiple interpretations exist. Qualitative research may not provide definitive answers to such complex questions, but it can yield a better understanding and a springboard for further focused work. There are multiple frameworks, methods, and considerations involved in shaping effective qualitative research. In most cases, these begin with self-reflection and articulation of positionality by the researcher. For some, qualitative research may appear commonsensical and easy; for others, it may appear daunting, given its high reliance on direct participant– researcher interactions. For yet others, qualitative research may appear subjective, unscientific, and consequently unreliable. All these perspectives reflect a lack of understanding of how effective qualitative research actually occurs. When undertaken in a rigorous manner, qualitative research provides unique opportunities for expanding our understanding of the social and clinical world that we inhabit.

Further Reading

• Breakwell GM, Hammond S, Fife-Schaw C, editors. Research methods in psychology. Thousand Oaks (CA): Sage Publications Ltd; 1995. [ Google Scholar ]
• Strauss A, Corbin J. Basics of qualitative research. Thousand Oaks (CA): Sage Publications Ltd; 1998. [ Google Scholar ]
• Willig C. Introducing qualitative research in psychology. Buckingham (UK): Open University Press; 2001. [ Google Scholar ]
• Guest G, Namey EE, Mitchel ML. Collecting qualitative data: a field manual for applied research. Thousand Oaks (CA): Sage Publications Ltd; 2013. [ Google Scholar ]
• Ogden R. Bias. In: Given LM, editor. The Sage encyclopedia of qualitative research methods. Thousand Oaks (CA): Sage Publications Inc; 2008. pp. 61–2. [ Google Scholar ]

This article is the seventh in the CJHP Research Primer Series, an initiative of the CJHP Editorial Board and the CSHP Research Committee. The planned 2-year series is intended to appeal to relatively inexperienced researchers, with the goal of building research capacity among practising pharmacists. The articles, presenting simple but rigorous guidance to encourage and support novice researchers, are being solicited from authors with appropriate expertise.

Previous article in this series:

Bond CM. The research jigsaw: how to get started. Can J Hosp Pharm . 2014;67(1):28–30.

Tully MP. Research: articulating questions, generating hypotheses, and choosing study designs. Can J Hosp Pharm . 2014;67(1):31–4.

Loewen P. Ethical issues in pharmacy practice research: an introductory guide. Can J Hosp Pharm. 2014;67(2):133–7.

Tsuyuki RT. Designing pharmacy practice research trials. Can J Hosp Pharm . 2014;67(3):226–9.

Bresee LC. An introduction to developing surveys for pharmacy practice research. Can J Hosp Pharm . 2014;67(4):286–91.

Gamble JM. An introduction to the fundamentals of cohort and case–control studies. Can J Hosp Pharm . 2014;67(5):366–72.

Competing interests: None declared.

• Open access
• Published: 31 August 2024

Suggested solutions to barriers in accessing healthcare by persons with disability in Uganda: a qualitative study

• Andrew Sentoogo Ssemata 1 , 2 ,
• Tracey Smythe 3 , 4 ,
• Slivesteri Sande 1 ,
• Abdmagidu Menya 1 ,
• Shaffa Hameed 3 ,
• Peter Waiswa 5 ,
• Femke Bannink Mbazzi 1 , 3 &
• Hannah Kuper 3  

BMC Health Services Research volume  24 , Article number:  1010 ( 2024 ) Cite this article

Metrics details

There are 1.3 billion people with disabilities globally, and they frequently face barriers to accessing healthcare, contributing to their worse health and higher mortality. However, little research has explored patient-reported approaches to improve healthcare for persons with disabilities. Consequently, this study aimed to explore possible solutions and recommendations to address the existing barriers to access to healthcare for persons with disabilities in rural Uganda.

We conducted 27 semi-structured interviews with individuals with various disabilities in rural Luuka district, Eastern Uganda, between September and November 2022. The participants included individuals with visual impairment ( n  = 5), physical impairment ( n  = 5), hearing impairment ( n  = 6), multiple impairments ( n  = 5), intellectual/cognitive impairment ( n  = 5), and albinism ( n  = 1). Interviews were recorded, transcribed verbatim, and thematically analysed. We categorized the solutions using the Missing Billion disability-inclusive health systems framework.

Our findings, framed within the health systems framework, revealed several critical themes. On the demand side, suggested solutions emphasized advocacy and sensitization for persons with disabilities, their communities, and caregivers about healthcare needs. Socio-economic empowerment and community-based health services were also highlighted as essential. On the supply side, participants stressed the importance of training healthcare workers on disability, facilitating dialogue and experience-sharing sessions, and employing health workers with disabilities. Additional recommendations included improving accessibility and reasonable accommodation, organizing inclusive services like special clinic days and outreaches, ensuring representation in health facility management, and establishing comprehensive rehabilitation services with affordable assistive devices.

The multifaceted solutions proposed by persons with disabilities highlight the complex challenges they face in accessing healthcare services and highlight the necessity for comprehensive, sustainable interventions. The call to action for policymakers and healthcare providers is to prioritise the incorporation of disability-inclusive practices and explore multi-dimensional approaches that foster a more inclusive healthcare environment that adequately meets the needs of persons with disabilities.

Peer Review reports

Universal health coverage (UHC) focuses on ensuring everyone has access to a full range of quality essential health services from health promotion to prevention, treatment, rehabilitation and palliative care without financial hardship [ 1 ]. Investing in primary health care (PHC) has been identified as the most effective and cost-efficient way to achieving UHC [ 2 ]. However, some people such as people with disabilities are left behind in many aspects of PHC [ 3 ]. Therefore, failure to ensure the inclusion of people with disabilities in healthcare will mean that global targets such as UHC will be difficult to achieve [ 4 , 5 , 6 ].

People with disabilities experience marginalisation and face lower life expectancy, higher rates of poverty, and reduced access to education and employment opportunities (WHO, 2022), which further limits their access to healthcare services and exacerbates their health conditions [ 7 , 8 ]. The health and wellbeing of persons with disability is further compounded by the limited resources and infrastructure in low and middle income countries (LMICs), which often lack the necessary healthcare facilities, trained healthcare professionals, and medical equipment to provide adequate healthcare services [ 9 , 10 ].

People with disabilities experience additional barriers to accessing quality healthcare services, due to inaccessible environments, under-serviced facilities and discriminatory belief systems and attitudes which may hinder their full and effective participation in society [ 11 , 12 , 13 , 14 ]. Additionally, a recent systematic review on the barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries demonstrated that attitudinal/ belief system barriers, informational barriers, and practical and logistical barriers greatly impact access to primary healthcare services for people with disabilities in LMICs [ 3 ]. These barriers deepen inequities in the quality of healthcare provided, and affects the full and equal enjoyment of all human rights and fundamental freedoms of persons with disabilities in line with the Convention on the Rights of Persons with Disabilities [ 15 ].

Although barriers to healthcare for persons with disabilities have been studied in other settings, they may not correspond to the lived experiences for persons with disabilities in rural Uganda. Understanding the barriers to accessing health care and how these barriers affect persons with disabilities is particularly important, as such knowledge can inform efforts to address these challenges [ 3 ].

There is a lack of solutions to improve access to healthcare for people with disabilities and an evaluation to know what works, to best invest the available meagre resources in order to improve the wellbeing of persons with disabilities [ 16 ]. This aligns with the findings of studies in Ghana [ 17 ] and the USA [ 18 ] underscoring the importance of incorporating recommendations from persons with disabilities in developing effective, evidence-based strategies to effectively address the barriers to healthcare access.

More importantly, identifying possible contextual solutions and recommendations from persons with disabilities is critical for the development of successful interventions aimed at improving health care access and eliminating access disparities, thereby averting further deterioration of health, wellbeing, and functionality [ 14 , 19 ]. While many studies have primarily focussed on understanding the barriers and facilitators, exploration of the possible solutions and recommendations has been under-researched [ 17 , 18 ].

However, while there are pockets of good practice and some successful interventions, they are often not widespread and frequently lack full integration of the disability perspective, typically not incorporating the viewpoints of persons with disabilities [ 20 , 21 ]. Therefore, improving access to healthcare for people with disabilities in these settings requires the examination of possible solutions and recommendations pertinent to development of comprehensive and inclusive healthcare systems that address the unique challenges faced by these populations [ 17 ].

Healthcare system in Uganda

Uganda’s healthcare system is a mixed system comprising public, private, and community-based services, managed primarily by the Ministry of Health [ 22 ]. The public sector that provides primary healthcare (first point of contact with the health system) services for the majority of the population is organized into a tiered system, ranging from national referral hospitals to regional, district, and lower level community health centres (HC IV, III, and II), each providing community-based preventive and promotive health services [ 22 , 23 ]. There are efforts to decentralize services and improve access and healthcare performance through the Uganda’s National Health Policy and Health Sector Development Plan [ 24 ], which guide the organization and delivery of health services. However, significant disparities still persist, particularly between urban and rural areas, where healthcare infrastructure is often lacking, and services are underfunded [ 25 ]. Vulnerable populations, including persons with disabilities, face additional barriers to accessing care, which are compounded by resource constraints and the uneven distribution of healthcare professionals [ 3 , 12 , 26 , 27 ]. Recent health policies and development plans aim to address these issues, but challenges remain in ensuring equitable and effective healthcare delivery across the country [ 28 ].

This study sought to explore patient-reported potential solutions and recommendations aimed at enhancing access to and delivery of primary healthcare services for people living with disabilities in rural Luuka district, Eastern Uganda. Uganda is - a low-income country in Eastern Africa with an estimated population of 45.8 million in 2021 with less than 15% of the population living in urban settings [ 29 ]. There are wide disparities in health status, underscored by major health system challenges including inaccessible and inequitable service provision to all persons at all times in both the public and private sectors [ 30 ].

Theoretical orientation

To understand the topic, we leveraged our study on the Missing Billion disability-inclusive health system framework [ 20 ]. The framework includes 4 system-level components and 5 service delivery components (2 on the demand side, 3 on the supply side) as shown in Fig.  1 . The Missing Billion disability-inclusive health system framework delineates key components essential for establishing a robust disability-inclusive healthcare system. We chose this framework because it is relevant for this context as it considers important objectives of disability-inclusive health systems that “expect, accept, and connect” people with disabilities to quality care critical for LMIC settings [ 20 , 31 ].

The Missing Billion disability-inclusive health systems framework

Study design

We conducted an exploratory qualitative study as part of the “Missing Billion” project implementation of community-based participatory approaches to improve access to healthcare for persons with disabilities in Uganda [ 26 ]. The exploratory qualitative approach [ 32 , 33 ] was used as our topic of interest is under-researched [ 17 ]. Qualitative methods are particularly well-suited to capturing the depth and complexity of individual experiences, providing rich, detailed insights that quantitative approaches might not fully capture [ 33 , 34 ]. Utilising a qualitative methodology would allow for the exploration of the perspectives and recommendations to improving access to health care for persons with disabilities [ 32 ].

Participants and setting

The study employed purposive sampling to identify people who self-identified as living with disabilities from Luuka district in Eastern Uganda, a region comprising seven sub-counties, one town council, and an approximate population of 203,500 individuals. Participants were purposively selected to represent five distinct impairment categories: physical, hearing, visual, cognitive, and multiple impairments. Recruitment methods included accessing (a) contact lists from the district’s disability focal person, (b) local disability associations, and (c) recommendations from participants involved in the study through a snowballing approach. We identified participants who were able to communicate, demonstrated the ability to give informed consent by correctly answering questions about the study; and lived in the community for more than two years. The sample was diverse in terms of participant age and type of disability. A total of 27 participants aged 18 years or older were approached and agreed to participate (Table  1 ), with only one individual declining to participate. We determined that our chosen sample size would be sufficient to achieve data saturation (point at which no new data or themes would emerge) [ 35 ]. The distribution across impairment categories (Table  1 ) was as follows: visual impairment ( n  = 5), physical impairment ( n  = 5), hearing impairment ( n  = 6), multiple impairments ( n  = 5), intellectual/cognitive impairment ( n  = 5), and albinism ( n  = 1). We selected a sample size that was large enough and encompassing various impairments to provide diverse perspectives but small enough to allow for an in-depth analysis of each participant’s experiences [ 35 ].

Data collection

Between September and November 2022, authors AS and SS, proficient in English, Lusoga, and Luganda, conducted in-depth interviews using a pilot-tested semi-structured interview guide (Supplementary file 1 ) developed by the researchers in close collaboration with an advisory group of persons with disabilities. The aim was to extract insights regarding potential solutions and recommendations for enhancing access to and provision of healthcare among individuals with disabilities in the region. The researchers (ASS and SS) experienced in disability-related qualitative research, interviewed the participants while participants with hearing impairment were interviewed by a research team member with hearing impairment supported by a sign language interpreter. Each 50–80-minute interview was audio-recorded, with fieldnotes taken by the researchers. The field notes were taken to capture observations, non-verbal cues, contextual details, immediate reflections and any other relevant information that could provide additional context to the verbal data. The interviews with participants with hearing impairment were voiced by the sign language interpreter and recorded. Data collection occurred in private locations, such as participants’ homes, community halls, or health facility compounds, chosen for comfort and confidentiality. Reasonable accommodations were provided to the participants based on their impairment such as large print information sheets, presence of a sign language interpreter, meeting the participant in their homes.

The researchers (AS and SS) held weekly debriefing meetings to compare notes, discuss emerging ideas and generate preliminary findings. This process ensured accuracy in data collection and interpretation, addressing any potential misunderstandings. These meetings continued throughout the analysis phase until data saturation was achieved.

Data management and analysis

All interview recordings were transcribed, with those conducted in Lusoga and Luganda translated into English. Transcripts were then summarized and indexed. Two researchers (ASS and SS) independently manually coded the data using MS Excel. Open coding facilitated the identification of new and evolving themes, while prominent themes raised by participants were identified. After each interview, the field notes were organized and reviewed alongside the transcribed interview data. Key observations and insights from the field notes were integrated into the analysis process to enrich our understanding of the data and to identify themes that may not have been immediately apparent from the interview transcripts alone. By incorporating the field notes into our analysis, we aimed to triangulate the data in order to produce a more nuanced and comprehensive interpretation of the findings, ensuring that our analysis and conclusions accurately reflected the experiences and perspectives of the participants. Thematic data saturation was reached through the analysis of all transcripts, ensuring exhaustion of new codes and themes [ 35 ]. Main themes were listed, and illustrative excerpts providing context from participants were reported in the results. Thematic analysis, utilizing a predetermined codebook further refined inductively from emerging themes and based on the Missing Billion disability-inclusive health systems framework [ 20 ], was employed to explore responses from persons with disabilities regarding their perspectives on solutions to improving healthcare access. Our focus was on the service delivery components of the framework. These are components that persons with disabilities in the community are very likely to reflect on rather than the system components (see Fig.  2 ). The framework was instrumental in organizing and categorizing the data during the analysis phase. We used the framework’s components as initial codes or themes, which allowed us to systematically analyse the data, identify patterns and relationships in relation to key theoretical constructs.

Rigor and trustworthiness

We employed a number of strategies to ensure rigor and trustworthiness in our study. To enhance credibility and validity of our findings, we used triangulation by collecting and analysing data from the interviews and field notes. Additionally, the authors (ASS, SS and AM) had multiple debriefing sessions to discuss emerging themes and ensure a consistent and comprehensive interpretation of the data. At these session meetings, we critically evaluated our biases and assumptions throughout various the study stages.

During purposive sampling of the participants, we considered maximum variation of the sample to include participants with different impairments to ensure relevant and rich data. We maintained the consistency of our coding by ensuring two authors coded the transcripts and any discrepancy, a third author part of the research team supported participated in the coding meetings to ensure dependability. Data collection continued until we reached data saturation, meaning no new themes or insights emerged in the later stages of analysis. We have provided a detailed account of our data collection and analysis methods, as well as a clear description of the study context and participant demographics, to enhance the transferability of our findings.

Ethics and informed consent details

The research received ethical approval from the Uganda Virus Research Institute’s ethics committee (REC ref GC/127/904) and the London School of Hygiene & Tropical Medicine ethics committee (Ref 26715). Clearance was also obtained from the Ugandan National Council of Science and Technology (Ref SS1348ES) and the Luuka district local government - district health office. Prior to any study related activities, participants were provided information sheet and consent forms in a language they were most comfortable to use (English or Lusoga – local dialect used in the study area). The researchers read and explained the study information to each participant. Participants had the privilege to ask any questions prior to consenting or during data collection. All participants provided written informed consent and for those with cognitive impairment, proxy consent was obtained in addition to guardian consent, in line with ethical guidelines.

The possible solutions and recommendations related to improving access to healthcare service were categorised based on the service delivery components rather than the system components of the Missing Billion disability-inclusive health systems framework (Fig.  2 ).

Suggested solutions and recommendations to the barriers to access to health care based on the Missing Billion disability-inclusive health systems framework proposed by the Missing Billion Initiative

AUTONOMY AND AWARENESS

People with disabilities make their own decisions about health care and are aware of their rights and options.

Advocacy and sensitizing persons with disabilities on health care

Participants stressed the need to raise awareness among people with disabilities about their healthcare rights using Village Health Teams (VHTs), healthcare workers, or community meetings. They emphasized the importance of informing them about accessing healthcare services and providing specific guidance on facility visits and service locations.

“Standing for our rights is key. We need to inform persons with disabilities about their rights. It needs sensitization of people with disability about their health , their rights when they get to the health facility. People with Albinism or those with other disabilities should be treated as human beings.” (Female, 25 years, albinism). “We must train and empower persons with disabilities to go to the health facilities when they are sick and not to sit at home and wait to die. They need to know they can also fall sick of other diseases like malaria not related to their disability and they need to go to hospital to receive treatment. I know there are those who think that a lame person like me doesn’t get sick , but we have red blood like anyone else , so advocacy and training is critical.” (Male, 50 years, Physical impairment).

Participants emphasized the importance of being empowered to advocate for themselves, boosting their confidence, assertiveness and independence in making informed decisions about their health without reliance on others.

“We must talk to people in the community , we educate and empower them on how to be involved to make informed decisions about their health or services they are supposed to get when they reach the health facility.” (Male, 40 years, visual impairment).

Additionally, participants indicated the need for peer support and mentorship in the communities and health facilities where individuals with disabilities can connect with others who have similar experiences for advice, emotional support, and encouragement to navigate the healthcare system and advocate for their needs.

Sensitization of communities and caregivers on disability

Participants recommended community and caregiver sensitization on disability to raise awareness and understanding of the unique health needs of this population. They suggested that such initiatives could reduce disability-related stigma, discrimination, and negative attitudes, while fostering inclusive and supportive environments that promote the well-being and rights of people with disabilities in accessing healthcare.

“Yes , continue to sensitize the caregivers and communities to support us and not discriminate. We need to be taken to hospital when we are ill.” (Female, 44 years, hearing impairment).

AFFORDABILITY - People with disabilities can afford to access health.

Social-economic empowerment for persons living with disabilities

Participants highlighted the need to improve their socioeconomic situation through providing opportunities, resources, and support systems to enhance their skills, access economic opportunities, and engage fully in society. They expressed confidence that economic empowerment would enable them to afford healthcare, access assistive devices, and maintain independent living.

“Our livelihood situation as people with disabilities is not a good. If am empowered to make a living , then I can get money to seek care , I am able to take care of myself the same way the person who has normal eyes is able to do. ” (Male, 40 years, visual impairment).

Participants noted that empowering persons with disabilities with financial literacy training and resources would not only enhances their financial independence but may also help them to proactively manage their health needs, make informed financial decisions, negotiate payment plans with healthcare providers and meet the costs associated with seeking healthcare.

“If I could get capital [income to invest] , I can carry out maize and coffee business as long as I have capital. This means I can generate money and not depend on others. Therefore , I am able to get what I want. Even if it is going to the health facility , I will be able to go as I will have the money.” (Female, 25 years, Multiple impairment).

Community-based health services and health saving schemes

Participants suggested that setting up community saving groups for medical and health savings to be able to continuously save small amounts on a regular basis for their health needs and support healthcare access. This would minimise on out-of-pocket cost to which many of them acknowledged not having at the time they need to seek healthcare.

“ We should encourage persons with disabilities to create community savings groups like our group is called “Twisakilala Namukube” and it meets there , (pointing across the road). I used to spend my money anyhow then I joined and started saving little by little and because my health is delicate , this saving has now helped me meet the hospital bills whenever I could fall sick , buying medicines that I needed.” (Female, 43 years, visual impairment).

Additionally, participants suggested the need for extending health services closer to their communities through community health days and integrated outreaches, encouraging home-based care services to help reduce on costly hospital visits and facilitate timely access to healthcare.

“I ask the government to bring services close to us. It will make access to health services cheaper. I don’t have to spend on transport or be forced to go to a private hospital. If they are doing community outreaches , services would be cheaper and then I don’t need to pay to go to Iganga or Jinja , it is very far for me.” (Male 50 years , visual impairment) .

Extending health services to the community was viewed as a mechanism to alleviate the financial burden due to high service and transportation costs due to the long distance to the health facilities, mitigate their inability to meet the costs associated with accessing healthcare, sparing them from resorting to private facilities that pose additional financial strain.

HUMAN RESOURCES

Health workforce is knowledgeable about disabilities and has the skills and flexibility to provide quality care.

Training healthcare workers on disability

Participants emphasized the critical need for comprehensive disability training for healthcare professionals. This training aims to augment their understanding, skills, and attitudes towards delivering inclusive and effective healthcare services for people with disabilities, thereby improving healthcare access. By educating healthcare workers on various forms of disabilities, as well as the unique needs, challenges, and rights of individuals with disabilities, this initiative seeks to foster empathy, diminish stigma, and bolster comprehension. Consequently, healthcare workers can offer personalized care that upholds the dignity and autonomy of individuals with disabilities.

“You need to reach out to the healthcare workers and train them on disability and teach them how to manage us well when we come to access healthcare. Training is key and will greatly help in inclusive healthcare.” (Female, 40 years, physical impairment).

This disability-inclusive healthcare training is anticipated by interviewees to cultivate an environment conducive to inclusive healthcare delivery.

“The healthcare workers we have do not know everything. So , if there are trainings to help them understand that there is nothing for us without us , it will change their attitude , the way they see us with disabilities and perhaps become more compassionate when providing care . (Male, 18 years, Cognitive impairment).

Equipped with enhanced skills and knowledge, healthcare workers will not only exhibit greater confidence in catering to individuals with disabilities but also minimize unnecessary referrals. This, in turn, promises to streamline healthcare delivery processes into culturally competent care, ensuring efficiency and inclusivity across the board.

“Sensitizing health workers in hospitals about disability to help improve service delivery for people with disabilities. Healthcare workers should be equipped with skills like sign language , reasonable accommodation or other key adjustments regarding issues of disabilities.” (Female, 26 years, hearing impairment).

Dialogue and experience sharing sessions

Participants also suggested the establishment of engagements sessions and discussion workshops between health workers and persons with disabilities. The purpose of these sessions would be to listen to and learn in context about the experiences and healthcare needs of persons with disabilities with the aim of addressing stigma, discrimination, stereotypes, and negative attitudes of health workers.

“First of all , most times we are left behind but if they invite us for some workshops and we are able to speak with the healthcare workers on how we feel and how we should be treated , the challenges we face , maybe it would give an opportunity for the health workers to appreciate what we go through as people who have disabilities.” (Male, 62 years, visual impairment). “Given a chance , I am able to engage in discussions and sensitize the healthcare workers very well because I know the challenges a person with disabilities experiences. You should organise that at every health facility there is a seminar led by people with disabilities to teach them [healthcare workers] on how to handle people with disabilities.” (Female, 18 years, multiple impairment).

Dialogue was seen as a mechanism to support healthcare workers to approach people living with disabilities with sensitivity, and open mindedness, ensuring that their care is delivered with the respect, and consideration.

Employing health workers with disabilities

Participants underscored the importance of inclusive recruitment strategies for healthcare workers to foster opportunities for individuals with disabilities within healthcare settings. They stressed the necessity of healthcare workers who not only comprehend the challenges and healthcare requirements of persons with disabilities, but also possess the ability to manage them with empathy and skillful care thereby improving healthcare access.

“If we have healthcare workers with disabilities , they will be an example to other health workers , will be advocates for improvements in the health system to make it more accessible and inclusive.” (Male, 34 years, physical impairment).

Integrating persons with disabilities into the healthcare workforce has the potential to enhance disability awareness among healthcare staff and cultivate a more inclusive and welcoming environment. This, in turn, is expected to encourage individuals with disabilities to seek healthcare services more regularly and confidently.

HEALTH FACILITY

Health-care services , including health-care facility infrastructure and information , are accessible for people with disabilities.

Improving accessibility and reasonable accommodation

Participants strongly advocated for improved accessibility in healthcare facilities, emphasizing the importance of ramps, rails, and accessible pathways for seamless navigation by people with disabilities. They also highlighted the urgent need for accessible restroom facilities, adjustable beds, and information in accessible formats. These measures are crucial for creating an inclusive healthcare environment, enhancing the overall healthcare experiences of individuals with disabilities, and promoting equality in healthcare access.

“Something needs to be done with our facilities to make them accessible then we can easily come for health service. They should put accessible walkways , so we pass with ease. They should have user-friendly toilets. They should bring adjustable beds , so it’s easy to get on and off.” (Female, 40 years, physical impairment). “Now most of the hospital beds are very high. We want adjustable beds at the facility so that you can crawl onto the bed independently even in my old age and then it can be adjusted for whatever procedure. This will make life easier for both the patient and the healthcare worker.” (Male, 80 years, Multiple impairment).

In addition, participants suggested that all health centers needed to be equipped with assistive devices and equipment to facilitate access and enhance the quality of care for persons with disabilities, in order for the healthcare workers to provide adequate reasonable accommodation.

Inclusive services, special clinic days and outreaches

Participants suggested the implementation of specific clinic days at health facilities as well as conducting outreaches that prioritize the needs of persons with disabilities. This was with reference to HIV special clinic days. Furthermore, these initiatives would help motivate individuals with disabilities to seek medical care promptly when they are unwell, ensuring dependable and accessible healthcare for this population.

“What is important is to create priority lines so receive healthcare easily and fast. This also reduces on the time you and the person who has left their work to escort you leave early or make special days for us to get dedicated care. That will make service delivery better.” (Male, 37 years, Hearing impairment).

Participants proposed creation of necessary accommodations within the broader healthcare system that make the service delivery more accessible and efficient for them rather than isolating care for persons with disabilities.

“ The way we are interested in inclusive service delivery , we can’t say that let us have separate health facilities specifically for people living with disabilities , that’s not possible apart from us having special clinic days where we are given priority like it is done for HIV or TB or diabetes - they have special days to pick medication from the health facilities. The same can be done for persons with disabilities.” (Female, 43 years, visual impairment).

In addition, some participants recommended creating dedicated departments with trained staff at health facilities that solely offer services to people with disabilities.

“Am asking the government to consider us who have disabilities and add more resources at the hospitals for us with disabilities like special departments with trained staff so that I do not have to wait in the long lines. As am crawling in the line , it may not be easy for a doctor to see me , or I may be run over.” (Female, 45 years, physical impairment).

Others suggested that the establishment of patient navigation services, scheduling appointments and prioritizing them when they visit health facilities would improve their service experience. Some recommended that health facilities should designate disability focal persons to monitor people with disabilities and make sure they receive timely and appropriate care.

“They should be able to know that they have people who have disabilities of such a category or those who are in such a condition , if that person reaches , he will want to be attended to in a special way quickly , you never know you may be taking it lightly and it continues to hurt him. But for us , a person sees you who is holding the baby and he does not see the child , so he continues taking you in a normal way yet when she gets sick , she gets into critical conditions.” (Female, 20 years, cognitive impairment).

Inclusion and representation on the health facility management committees

Participants indicated that including people with disabilities on health facility management committees, would promote equal participation in service delivery, decision making processes, contributing to more inclusive and representative healthcare delivery practices.

“A person with a disability should be included on the health facility committee. That is the only way we can be helped , and our voice be heard.” (Male, 34 years, physical impairment).

Such inclusion was seen as an opportunity to facilitate advocacy for the necessary services required by people with disabilities, promote disability awareness, advocate for policy changes, and improve community-based healthcare services.

REHABILITATION AND ASSISTIVE TECHNOLOGY

quality rehabilitation and health services are available.

Establishment of comprehensive rehabilitation services

Participants recommended the setup of rehabilitation services at the health facilities where they can be referred for extensive specialist care including physical therapy, occupational therapy, speech therapy, and psychological support, directly impacting their access to healthcare services. Although participants acknowledged the high costs of these services, the establishment at lower health facilities would minimise on the long distances and costly travel expenses to seek the services elsewhere.

“we need to promote or invest more in rehabilitation health system , so we have some rehabilitation done at least at the health centre IIIs in our district. So , besides training healthcare workers there can be a way government can organize routine visits for the health workers to visit rehabilitation centres where they can see what takes place there maybe it will help them gain. (Male , 30 years Multiple impairment)

On the other hand, participants recommended having a streamlined system for connecting persons with disabilities from the primary health care facilities to the more specialist services.

Making assistive devices accessible and affordable

People with disabilities strongly emphasized the need for affordable availability of assistive devices such as wheelchairs, hearing aids, glasses, and memory aids. Participants expressed concern that the assistive equipment is prohibitively expensive for individuals with impairments and not readily accessible in the local market. As a result, individuals who require such devices must travel outside of their district to obtain them. The provision of assistive devices at affordable prices would significantly enhance the mobility and independence of people with impairments, thereby improving their overall access to healthcare services.

“Of course , I will talk about transport from home to the facility. Maybe I have this wheelchair , but maybe it’s not the type that I would have loved to have. I may need to have the tricycle because that one would be easy for me to get to the facility. Also , these assistive devices for the Persons with disabilities are expensive. Just look at this wheelchair , it costs UGX 2 million (approx. $530) just a wheelchair yet , it my legs , it is the one I have to use , when you look at the blind , the white cane , you see it very small but it is UGX 360 , 000 (approx. $96) so things are very expensive. So , if the assistive devices are subsidized , it would be easy for us to reach the healthcare service points.” (Female, 40 years, physical impairment).

This study aimed to explore the solutions and recommendations proposed by persons with disabilities in Luuka district, Eastern Uganda, to improve access to healthcare. The analysis identified key solutions related to both reaching (autonomy and awareness, affordability) and receiving care (human resources, health facilities, rehabilitation and assistive technology), encompassing various domains. Firstly, autonomy and awareness are emphasised through advocacy, empowerment, and sensitisation efforts, including informing people about their rights and involving them in decision-making processes. Secondly, affordability is addressed through socio-economic empowerment initiatives, community-based health services, and health saving schemes to minimise financial barriers. Thirdly, enhancing human resources involves training healthcare workers on disability, facilitating dialogue sessions between healthcare workers and persons with disabilities, and advocating for the employment of healthcare workers with disabilities. Fourthly, improvements in health facility infrastructure and services are proposed, including enhancing accessibility and reasonable accommodation measures, implementing inclusive services and special clinic days, and establishing patient navigation services. Finally, addressing rehabilitation and assistive technology needs entails establishing comprehensive rehabilitation services and ensuring the affordability and accessibility of assistive devices. These multifaceted solutions proposed by persons with disabilities aim to address the complex challenges that they face in accessing healthcare services, promoting inclusivity, autonomy, and affordability.

These findings are important to help guide the development and implementation of programmes and policies to improve access to healthcare for people with disabilities. These are important, as a vast body of evidence shows that people with disabilities frequently experience poor health and a range of barriers in accessing services, including evidence from Uganda [ 3 , 7 , 8 , 36 , 37 ]. Comprehensive analyses from LMICs shows that that the health system is failing to include people with disabilities and the range of interventions to improve the health of people with disabilities in LMICs is targeted at individuals, rather than systemic changes [ 16 ].

Our study adds to the understanding of how these potential solutions and recommendations for improving healthcare access can be developed, particularly in low-income settings like Uganda in three substantive ways. We used a qualitative approach and directly engaged persons with disabilities, and so the study provides nuanced insights into their experiences and fundamental changes needed regarding healthcare access [ 33 , 34 ]. This firsthand perspective is invaluable for addressing context-specific barriers and tailoring interventions accordingly. Moreover, the study’s focus on community-based participatory approaches underscores the importance of grassroots involvement in designing and implementing solutions [ 38 , 39 ]. This is particularly relevant in resource-constrained settings where top-down approaches may be less effective, but also aligns with the disability movement slogan of “Nothing about us, Without us” [ 39 ]. A twin-track approach actively involving persons with disabilities that focusses on mainstreaming disability, tailored and targeting people with disabilities is required in implementation of interventions and solutions that address the barriers to healthcare access for persons with disabilities [ 27 ]. The study also highlights the importance of addressing not only physical accessibility but also socio-economic factors such as empowerment, financial literacy, and social support networks in enhancing healthcare access for people with disabilities. This holistic approach acknowledges the multifaceted nature of barriers to healthcare and emphasizes the need for comprehensive, sustainable interventions.

We note that participants suggested creation of special clinic days that may improve access, provide dedicated time and resources tailored to their specific needs, offer specialized services and reasonable accommodations to better meet the needs of persons with disabilities. However, we acknowledge that this approach may have negative consequences such as unintentionally reinforcing segregation rather than integrating them into mainstream healthcare services, stigmatization or marginalization if they are only able to access healthcare services on designated special clinic days, rather than being able to access services every day. The special clinic days may also require designating additional resources and staffing, which could divert resources away from efforts to make healthcare services universally accessible and inclusive on all days.

Strengths and limitations of study

The strengths of our study include the first qualitative exploration of solutions and recommendations to healthcare access improvement in rural Uganda. We interviewed participants with various impairments representative of the disabilities people experience. However, their suggestions may not always be practical or applicable - such as training all healthcare workers on sign language. Therefore, their views must be balanced by other pieces of evidence and triangulated with data from other stakeholders. The qualitative methodology enabled a detailed exploration of perspectives of persons with disabilities. Some of the data were collected by person with disability which aided effective data collection. The utilisation of the service delivery components of the Missing Billion disability-inclusive health systems framework [ 20 ] to guide study that includes consideration from both the demand and supply side provided a comprehensive understanding of the topic. The framework supports a structured approach to assessing the holistic inclusion of persons with disabilities into the health system, leveraging on key indicators related to different components. The limitations of this study include the rural setting, which may not reflect and differ from perspectives of participants from an urban cosmopolitan setting. The participants suggested possible solutions and recommendations that may need other factors in combination to cause improvement in healthcare access for persons with disabilities. Participants were representative of one district. However, as they were with various impairments and recruited using several strategies, they may inform overall perspectives of persons with disabilities in a rural setting. As participants were purposively selected, there is a possible influence of social desirability bias on participant responses.

Implications: research, service provision

The findings from our study suggest the need for future studies to explore possible solutions and recommendations in other regions of Uganda or similar low-income settings. Additionally, there is a need for research to develop, test and implement interventions in addressing the barriers to healthcare access. There is not one “magic bullet” to overcome the barriers to healthcare faced by people with disabilities, and so we recommend that studies should explore multi-dimensional approaches. Our study suggests valuable insights for policy makers and program implementers, emphasising the significance of integrating disability-inclusive practices into healthcare service delivery, such as adapting health facilities and training healthcare personnel, to promote health equity for individuals with disabilities. Additionally, we advocate for resource allocation and support for legislation that protects the rights of persons with disabilities towards improving accessibility and affordability of healthcare services.

This study underscores the imperative of integrating disability-inclusive practices into healthcare service delivery to ensure health equity for persons with disabilities. The multifaceted solutions proposed by persons with disabilities highlight the complex challenges they face in accessing healthcare services and emphasise the need for comprehensive, sustainable interventions. Moving forward, there is a call to action for policymakers and healthcare providers to prioritise the incorporation of disability-inclusive practices, allocate resources, support legislation protecting the rights of persons with disabilities, and explore multi-dimensional approaches to overcome barriers to healthcare access.

Data availability

The data analysed during the current study are provided within the manuscript. The transcripts and codebook are not publicly available due to the potential for identifying individual participants.

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Acknowledgements

The authors wish to acknowledge the study participants and the assistance provided by the District health office.

This work was supported by the National Institute for Health and Care Research (NIHR) professorship grant award to HK - Grant number NIHR301621.

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Andrew Sentoogo Ssemata, Slivesteri Sande, Abdmagidu Menya & Femke Bannink Mbazzi

Department of Global Health and Development, London School of Hygiene and Tropical Medicine, London, UK

Andrew Sentoogo Ssemata

International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, UK

Tracey Smythe, Shaffa Hameed, Femke Bannink Mbazzi & Hannah Kuper

Division of Physiotherapy, Department of Health and Rehabilitation Sciences, Stellenbosch University, Cape Town, South Africa

Tracey Smythe

School of Public Health, College of Health Sciences, Makerere University, Kampala, Uganda

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The study concept and design were conceived by HK, TS, ASS, FBM, SH and PW. Data was collected by ASS and SS. Analysis was performed by ASS, SS, AM supported by FBM. ASS, TS prepared the first draft of the manuscript. All authors provided edits and critiqued the manuscript for intellectual content.

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Correspondence to Andrew Sentoogo Ssemata .

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Ethics approval for this study was provided by the Uganda Virus Research Institute’s ethics committee (Ref GC/127/904); the London School of Hygiene & Tropical Medicine ethics committee (Ref 26715) and the Ugandan National Council of Science and Technology (Ref SS1348ES). All participants provided written informed consent to participate in the study.

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Ssemata, A.S., Smythe, T., Sande, S. et al. Suggested solutions to barriers in accessing healthcare by persons with disability in Uganda: a qualitative study. BMC Health Serv Res 24 , 1010 (2024). https://doi.org/10.1186/s12913-024-11448-4

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Received : 29 May 2024

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Published : 31 August 2024

DOI : https://doi.org/10.1186/s12913-024-11448-4

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