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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.

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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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In This Article Expand or collapse the "in this article" section Social Work Research Methods

Introduction.

• History of Social Work Research Methods
• Feasibility Issues Influencing the Research Process
• Measurement Methods
• Existing Scales
• Group Experimental and Quasi-Experimental Designs for Evaluating Outcome
• Single-System Designs for Evaluating Outcome
• Program Evaluation
• Surveys and Sampling
• Introductory Statistics Texts
• Advanced Aspects of Inferential Statistics
• Qualitative Research Methods
• Qualitative Data Analysis
• Historical Research Methods
• Meta-Analysis and Systematic Reviews
• Research Ethics
• Culturally Competent Research Methods
• Teaching Social Work Research Methods

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• Community-Based Participatory Research
• Economic Evaluation
• Evidence-based Social Work Practice
• Evidence-based Social Work Practice: Finding Evidence
• Evidence-based Social Work Practice: Issues, Controversies, and Debates
• Experimental and Quasi-Experimental Designs
• Impact of Emerging Technology in Social Work Practice
• Implementation Science and Practice
• Interviewing
• Measurement, Scales, and Indices
• Meta-analysis
• Occupational Social Work
• Postmodernism and Social Work
• Qualitative Research
• Research, Best Practices, and Evidence-based Group Work
• Social Intervention Research
• Social Work Profession
• Systematic Review Methods
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Social Work Research Methods by Allen Rubin LAST REVIEWED: 28 April 2017 LAST MODIFIED: 14 December 2009 DOI: 10.1093/obo/9780195389678-0008

Social work research means conducting an investigation in accordance with the scientific method. The aim of social work research is to build the social work knowledge base in order to solve practical problems in social work practice or social policy. Investigating phenomena in accordance with the scientific method requires maximal adherence to empirical principles, such as basing conclusions on observations that have been gathered in a systematic, comprehensive, and objective fashion. The resources in this entry discuss how to do that as well as how to utilize and teach research methods in social work. Other professions and disciplines commonly produce applied research that can guide social policy or social work practice. Yet no commonly accepted distinction exists at this time between social work research methods and research methods in allied fields relevant to social work. Consequently useful references pertaining to research methods in allied fields that can be applied to social work research are included in this entry.

This section includes basic textbooks that are used in courses on social work research methods. Considerable variation exists between textbooks on the broad topic of social work research methods. Some are comprehensive and delve into topics deeply and at a more advanced level than others. That variation is due in part to the different needs of instructors at the undergraduate and graduate levels of social work education. Most instructors at the undergraduate level prefer shorter and relatively simplified texts; however, some instructors teaching introductory master’s courses on research prefer such texts too. The texts in this section that might best fit their preferences are by Yegidis and Weinbach 2009 and Rubin and Babbie 2007 . The remaining books might fit the needs of instructors at both levels who prefer a more comprehensive and deeper coverage of research methods. Among them Rubin and Babbie 2008 is perhaps the most extensive and is often used at the doctoral level as well as the master’s and undergraduate levels. Also extensive are Drake and Jonson-Reid 2007 , Grinnell and Unrau 2007 , Kreuger and Neuman 2006 , and Thyer 2001 . What distinguishes Drake and Jonson-Reid 2007 is its heavy inclusion of statistical and Statistical Package for the Social Sciences (SPSS) content integrated with each chapter. Grinnell and Unrau 2007 and Thyer 2001 are unique in that they are edited volumes with different authors for each chapter. Kreuger and Neuman 2006 takes Neuman’s social sciences research text and adapts it to social work. The Practitioner’s Guide to Using Research for Evidence-based Practice ( Rubin 2007 ) emphasizes the critical appraisal of research, covering basic research methods content in a relatively simplified format for instructors who want to teach research methods as part of the evidence-based practice process instead of with the aim of teaching students how to produce research.

Drake, Brett, and Melissa Jonson-Reid. 2007. Social work research methods: From conceptualization to dissemination . Boston: Allyn and Bacon.

This introductory text is distinguished by its use of many evidence-based practice examples and its heavy coverage of statistical and computer analysis of data.

Grinnell, Richard M., and Yvonne A. Unrau, eds. 2007. Social work research and evaluation: Quantitative and qualitative approaches . 8th ed. New York: Oxford Univ. Press.

Contains chapters written by different authors, each focusing on a comprehensive range of social work research topics.

Kreuger, Larry W., and W. Lawrence Neuman. 2006. Social work research methods: Qualitative and quantitative applications . Boston: Pearson, Allyn, and Bacon.

An adaptation to social work of Neuman's social sciences research methods text. Its framework emphasizes comparing quantitative and qualitative approaches. Despite its title, quantitative methods receive more attention than qualitative methods, although it does contain considerable qualitative content.

Rubin, Allen. 2007. Practitioner’s guide to using research for evidence-based practice . Hoboken, NJ: Wiley.

This text focuses on understanding quantitative and qualitative research methods and designs for the purpose of appraising research as part of the evidence-based practice process. It also includes chapters on instruments for assessment and monitoring practice outcomes. It can be used at the graduate or undergraduate level.

Rubin, Allen, and Earl R. Babbie. 2007. Essential research methods for social work . Belmont, CA: Thomson Brooks Cole.

This is a shorter and less advanced version of Rubin and Babbie 2008 . It can be used for research methods courses at the undergraduate or master's levels of social work education.

Rubin, Allen, and Earl R. Babbie. Research Methods for Social Work . 6th ed. Belmont, CA: Thomson Brooks Cole, 2008.

This comprehensive text focuses on producing quantitative and qualitative research as well as utilizing such research as part of the evidence-based practice process. It is widely used for teaching research methods courses at the undergraduate, master’s, and doctoral levels of social work education.

Thyer, Bruce A., ed. 2001 The handbook of social work research methods . Thousand Oaks, CA: Sage.

This comprehensive compendium includes twenty-nine chapters written by esteemed leaders in social work research. It covers quantitative and qualitative methods as well as general issues.

Yegidis, Bonnie L., and Robert W. Weinbach. 2009. Research methods for social workers . 6th ed. Boston: Allyn and Bacon.

This introductory paperback text covers a broad range of social work research methods and does so in a briefer fashion than most lengthier, hardcover introductory research methods texts.

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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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Social Work Research Methods That Drive the Practice

Social workers advocate for the well-being of individuals, families and communities. But how do social workers know what interventions are needed to help an individual? How do they assess whether a treatment plan is working? What do social workers use to write evidence-based policy?

Social work involves research-informed practice and practice-informed research. At every level, social workers need to know objective facts about the populations they serve, the efficacy of their interventions and the likelihood that their policies will improve lives. A variety of social work research methods make that possible.

Data-Driven Work

Data is a collection of facts used for reference and analysis. In a field as broad as social work, data comes in many forms.

Quantitative vs. Qualitative

As with any research, social work research involves both quantitative and qualitative studies.

Quantitative Research

Answers to questions like these can help social workers know about the populations they serve — or hope to serve in the future.

• How many students currently receive reduced-price school lunches in the local school district?
• How many hours per week does a specific individual consume digital media?
• How frequently did community members access a specific medical service last year?

Quantitative data — facts that can be measured and expressed numerically — are crucial for social work.

Quantitative research has advantages for social scientists. Such research can be more generalizable to large populations, as it uses specific sampling methods and lends itself to large datasets. It can provide important descriptive statistics about a specific population. Furthermore, by operationalizing variables, it can help social workers easily compare similar datasets with one another.

Qualitative Research

Qualitative data — facts that cannot be measured or expressed in terms of mere numbers or counts — offer rich insights into individuals, groups and societies. It can be collected via interviews and observations.

• What attitudes do students have toward the reduced-price school lunch program?
• What strategies do individuals use to moderate their weekly digital media consumption?
• What factors made community members more or less likely to access a specific medical service last year?

Qualitative research can thereby provide a textured view of social contexts and systems that may not have been possible with quantitative methods. Plus, it may even suggest new lines of inquiry for social work research.

Mixed Methods Research

Combining quantitative and qualitative methods into a single study is known as mixed methods research. This form of research has gained popularity in the study of social sciences, according to a 2019 report in the academic journal Theory and Society. Since quantitative and qualitative methods answer different questions, merging them into a single study can balance the limitations of each and potentially produce more in-depth findings.

However, mixed methods research is not without its drawbacks. Combining research methods increases the complexity of a study and generally requires a higher level of expertise to collect, analyze and interpret the data. It also requires a greater level of effort, time and often money.

The Importance of Research Design

Data-driven practice plays an essential role in social work. Unlike philanthropists and altruistic volunteers, social workers are obligated to operate from a scientific knowledge base.

To know whether their programs are effective, social workers must conduct research to determine results, aggregate those results into comprehensible data, analyze and interpret their findings, and use evidence to justify next steps.

Employing the proper design ensures that any evidence obtained during research enables social workers to reliably answer their research questions.

Research Methods in Social Work

The various social work research methods have specific benefits and limitations determined by context. Common research methods include surveys, program evaluations, needs assessments, randomized controlled trials, descriptive studies and single-system designs.

Surveys involve a hypothesis and a series of questions in order to test that hypothesis. Social work researchers will send out a survey, receive responses, aggregate the results, analyze the data, and form conclusions based on trends.

Surveys are one of the most common research methods social workers use — and for good reason. They tend to be relatively simple and are usually affordable. However, surveys generally require large participant groups, and self-reports from survey respondents are not always reliable.

Program Evaluations

Social workers ally with all sorts of programs: after-school programs, government initiatives, nonprofit projects and private programs, for example.

Crucially, social workers must evaluate a program’s effectiveness in order to determine whether the program is meeting its goals and what improvements can be made to better serve the program’s target population.

Evidence-based programming helps everyone save money and time, and comparing programs with one another can help social workers make decisions about how to structure new initiatives. Evaluating programs becomes complicated, however, when programs have multiple goal metrics, some of which may be vague or difficult to assess (e.g., “we aim to promote the well-being of our community”).

Needs Assessments

Social workers use needs assessments to identify services and necessities that a population lacks access to.

Common social work populations that researchers may perform needs assessments on include:

• People in a specific income group
• Everyone in a specific geographic region
• A specific ethnic group
• People in a specific age group

In the field, a social worker may use a combination of methods (e.g., surveys and descriptive studies) to learn more about a specific population or program. Social workers look for gaps between the actual context and a population’s or individual’s “wants” or desires.

For example, a social worker could conduct a needs assessment with an individual with cancer trying to navigate the complex medical-industrial system. The social worker may ask the client questions about the number of hours they spend scheduling doctor’s appointments, commuting and managing their many medications. After learning more about the specific client needs, the social worker can identify opportunities for improvements in an updated care plan.

In policy and program development, social workers conduct needs assessments to determine where and how to effect change on a much larger scale. Integral to social work at all levels, needs assessments reveal crucial information about a population’s needs to researchers, policymakers and other stakeholders. Needs assessments may fall short, however, in revealing the root causes of those needs (e.g., structural racism).

Randomized Controlled Trials

Randomized controlled trials are studies in which a randomly selected group is subjected to a variable (e.g., a specific stimulus or treatment) and a control group is not. Social workers then measure and compare the results of the randomized group with the control group in order to glean insights about the effectiveness of a particular intervention or treatment.

Randomized controlled trials are easily reproducible and highly measurable. They’re useful when results are easily quantifiable. However, this method is less helpful when results are not easily quantifiable (i.e., when rich data such as narratives and on-the-ground observations are needed).

Descriptive Studies

Descriptive studies immerse the researcher in another context or culture to study specific participant practices or ways of living. Descriptive studies, including descriptive ethnographic studies, may overlap with and include other research methods:

• Informant interviews
• Census data
• Observation

By using descriptive studies, researchers may glean a richer, deeper understanding of a nuanced culture or group on-site. The main limitations of this research method are that it tends to be time-consuming and expensive.

Single-System Designs

Unlike most medical studies, which involve testing a drug or treatment on two groups — an experimental group that receives the drug/treatment and a control group that does not — single-system designs allow researchers to study just one group (e.g., an individual or family).

Single-system designs typically entail studying a single group over a long period of time and may involve assessing the group’s response to multiple variables.

For example, consider a study on how media consumption affects a person’s mood. One way to test a hypothesis that consuming media correlates with low mood would be to observe two groups: a control group (no media) and an experimental group (two hours of media per day). When employing a single-system design, however, researchers would observe a single participant as they watch two hours of media per day for one week and then four hours per day of media the next week.

These designs allow researchers to test multiple variables over a longer period of time. However, similar to descriptive studies, single-system designs can be fairly time-consuming and costly.

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5.2 Conceptualization

Learning objectives.

• Define concept
• Identify why defining our concepts is important
• Describe how conceptualization works in quantitative and qualitative research
• Define dimensions in terms of social scientific measurement
• Apply reification to conceptualization

In this section, we’ll take a look at one of the first steps in the measurement process, which is conceptualization. This has to do with defining our terms as clearly as possible and also not taking ourselves too seriously in the process. Our definitions mean only what we say they mean—nothing more and nothing less. Let’s talk first about how to define our terms, and then we’ll examine not taking ourselves (or our terms, rather) too seriously.

Concepts and conceptualization

  So far, the word concept has come up quite a bit, and it would behoove us to make sure we have a shared understanding of that term. A concept is the notion or image that we conjure up when we think of some cluster of related observations or ideas. For example, masculinity is a concept. What do you think of when you hear that word? Presumably, you imagine some set of behaviors and perhaps even a particular style of self-presentation. Of course, we can’t necessarily assume that everyone conjures up the same set of ideas or images when they hear the word masculinity . In fact, there are many possible ways to define the term. And while some definitions may be more common or have more support than others, there isn’t one true, always-correct-in-all-settings definition. What counts as masculine may shift over time, from culture to culture, and even from individual to individual (Kimmel, 2008).  This is why defining our concepts is so important.

You might be asking yourself why you should bother defining a term for which there is no single, correct definition. Believe it or not, this is true for any concept you might measure in a research study—there is never a single, always-correct definition. When we conduct empirical research, our terms mean only what we say they mean. There’s a New Yorker cartoon that aptly represents this idea. It depicts a young George Washington holding an axe and standing near a freshly chopped cherry tree. Young George is looking up at a frowning adult who is standing over him, arms crossed. The caption depicts George explaining, “It all depends on how you define ‘chop.’” Young George Washington gets the idea—whether he actually chopped down the cherry tree depends on whether we have a shared understanding of the term chop .

Without a shared understanding of this term, our understandings of what George has just done may differ. Likewise, without understanding how a researcher has defined her key concepts, it would be nearly impossible to understand the meaning of that researcher’s findings and conclusions. Thus, any decision we make based on findings from empirical research should be made based on full knowledge not only of how the research was designed, but also of how its concepts were defined and measured.

So, how do we define our concepts? This is part of the process of measurement, and this portion of the process is called conceptualization. The answer depends on how we plan to approach our research. We will begin with quantitative conceptualization and then discuss qualitative conceptualization.

In quantitative research, conceptualization involves writing out clear, concise definitions for our key concepts. Sticking with the previously mentioned example of masculinity, think about what comes to mind when you read that term. How do you know masculinity when you see it? Does it have something to do with men? With social norms? If so, perhaps we could define masculinity as the social norms that men are expected to follow. That seems like a reasonable start, and at this early stage of conceptualization, brainstorming about the images conjured up by concepts and playing around with possible definitions is appropriate. However, this is just the first step.

It would make sense as well to consult other previous research and theory to understand if other scholars have already defined the concepts we’re interested in. This doesn’t necessarily mean we must use their definitions, but understanding how concepts have been defined in the past will give us an idea about how our conceptualizations compare with the predominant ones out there. Understanding prior definitions of our key concepts will also help us decide whether we plan to challenge those conceptualizations or rely on them for our own work. Finally, working on conceptualization is likely to help in the process of refining your research question to one that is specific and clear in what it asks.

If we turn to the literature on masculinity, we will surely come across work by Michael Kimmel, one of the preeminent masculinity scholars in the United States. After consulting Kimmel’s prior work (2000; 2008), we might tweak our initial definition of masculinity just a bit. Rather than defining masculinity as “the social norms that men are expected to follow,” perhaps instead we’ll define it as “the social roles, behaviors, and meanings prescribed for men in any given society at any one time” (Kimmel & Aronson, 2004, p. 503).  Our revised definition is both more precise and more complex. Rather than simply addressing one aspect of men’s lives (norms), our new definition addresses three aspects: roles, behaviors, and meanings. It also implies that roles, behaviors, and meanings may vary across societies and over time. To be clear, we’ll also have to specify the particular society and time period we’re investigating as we conceptualize masculinity.

As you can see, conceptualization isn’t quite as simple as merely applying any random definition that we come up with to a term. Sure, it may involve some initial brainstorming, but conceptualization goes beyond that. Once we’ve brainstormed a bit about the images a particular word conjures up for us, we should also consult prior work to understand how others define the term in question. And after we’ve identified a clear definition that we’re happy with, we should make sure that every term used in our definition will make sense to others. Are there terms used within our definition that also need to be defined? If so, our conceptualization is not yet complete. And there is yet another aspect of conceptualization to consider—concept dimensions. We’ll consider that aspect along with an additional word of caution about conceptualization in the next subsection.

Conceptualization in qualitative research

Conceptualization in qualitative research proceeds a bit differently than in quantitative research. Because qualitative researchers are interested in the understandings and experiences of their participants, it is less important for the researcher to find one fixed definition for a concept before starting to interview or interact with participants. The researcher’s job is to accurately and completely represent how their participants understand a concept, not to test their own definition of that concept.

If you were conducting qualitative research on masculinity, you would likely consult previous literature like Kimmel’s work mentioned above. From your literature review, you may come up with a working definition for the terms you plan to use in your study, which can change over the course of the investigation. However, the definition that matters is the definition that your participants share during data collection. A working definition is merely a place to start, and researchers should take care not to think it is the only or best definition out there.

In qualitative inquiry, your participants are the experts (sound familiar, social workers?) on the concepts that arise during the research study. Your job as the researcher is to accurately and reliably collect and interpret their understanding of the concepts they describe while answering your questions. Conceptualization of qualitative concepts is likely to change over the course of qualitative inquiry, as you learn more information from your participants. Indeed, getting participants to comment on, extend, or challenge the definitions and understandings of other participants is a hallmark of qualitative research. This is the opposite of quantitative research, in which definitions must be completely set in stone before the inquiry can begin.

A word of caution about conceptualization

  Whether you have chosen qualitative or quantitative methods, you should have a clear definition for the term masculinity and make sure that the terms we use in our definition are equally clear—and then we’re done, right? Not so fast. If you’ve ever met more than one man in your life, you’ve probably noticed that they are not all exactly the same, even if they live in the same society and at the same historical time period. This could mean there are dimensions of masculinity. In terms of social scientific measurement, concepts can be said to have multiple dimensions when there are multiple elements that make up a single concept. With respect to the term masculinity , dimensions could be regional (is masculinity defined differently in different regions of the same country?), age-based (is masculinity defined differently for men of different ages?), or perhaps power-based (does masculinity differ based on membership to privileged groups?). In any of these cases, the concept of masculinity would be considered to have multiple dimensions. While it isn’t necessarily required to spell out every possible dimension of the concepts you wish to measure, it may be important to do so depending on the goals of your research. The point here is to be aware that some concepts have dimensions and to think about whether and when dimensions may be relevant to the concepts you intend to investigate.

Before we move on to the additional steps involved in the measurement process, it would be wise to remind ourselves not to take our definitions too seriously. Conceptualization must be open to revisions, even radical revisions, as scientific knowledge progresses. Although that we should consult prior scholarly definitions of our concepts, it would be wrong to assume that just because prior definitions exist that they are more real than the definitions we create (or, likewise, that our own made-up definitions are any more real than any other definition). It would also be wrong to assume that just because definitions exist for some concept that the concept itself exists beyond some abstract idea in our heads. This idea, assuming that our abstract concepts exist in some concrete, tangible way, is known as reification .

To better understand reification, take a moment to think about the concept of social structure. This concept is central to critical thinking. When social scientists talk about social structure, they are talking about an abstract concept. Social structures shape our ways of being in the world and of interacting with one another, but they do not exist in any concrete or tangible way. A social structure isn’t the same thing as other sorts of structures, such as buildings or bridges. Sure, both types of structures are important to how we live our everyday lives, but one we can touch, and the other is just an idea that shapes our way of living.

Here’s another way of thinking about reification: Think about the term family . If you were interested in studying this concept, we’ve learned that it would be good to consult prior theory and research to understand how the term has been conceptualized by others. But we should also question past conceptualizations. Think, for example, about how different the definition of family was 50 years ago. Because researchers from that time period conceptualized family using now outdated social norms, social scientists from 50 years ago created research projects based on what we consider now to be a very limited and problematic notion of what family means. Their definitions of family were as real to them as our definitions are to us today. If researchers never challenged the definitions of terms like family, our scientific knowledge would be filled with the prejudices and blind spots from years ago. It makes sense to come to some social agreement about what various concepts mean. Without that agreement, it would be difficult to navigate through everyday living. But at the same time, we should not forget that we have assigned those definitions, they are imperfect and subject to change as a result of critical inquiry.

Key Takeaways

• Conceptualization is a process that involves coming up with clear, concise definitions.
• Conceptualization in quantitative research comes from the researcher’s ideas or the literature.
• Qualitative researchers conceptualize by creating working definitions which will be revised based on what participants say.
• Some concepts have multiple elements or dimensions.
• Researchers should acknowledge the limitations of their definitions for concepts.
• Concept- notion or image that we conjure up when we think of some cluster of related observations or ideas
• Conceptualization- writing out clear, concise definitions for our key concepts, particularly in quantitative research
• Multi-dimensional concepts- concepts that are comprised of multiple elements
• Reification- assuming that abstract concepts exist in some concrete, tangible way

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Data Collection for Field Reports in Social Work Practice

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This chapter equips social work students with essential skills for gathering and utilizing data effectively. It begins by providing an overview of both qualitative and quantitative data collection techniques, ensuring that students are well-versed in diverse methods. The chapter then focuses on the practical aspect of data collection, emphasizing the use of data collection tools and instruments to streamline the process and enhance data quality. Through this chapter, social work students gain the knowledge and skills necessary to collect, manage, and utilize data to inform their practice, enhancing their ability to make data-driven decisions in the field.

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• Field practices

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What is the primary purpose of data collection in social work field practice?

Name two qualitative data collection techniques discussed in this chapter and briefly explain their applications.

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Statistical analysis

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In quantitative data collection, what method involves asking participants to respond to a series of predetermined questions?

Participant observation

Focus group discussions

Surveys and questionnaires

Key informant interviews

Why is ensuring participant autonomy important in social work field research?

It protects the participants’ rights and choices.

It simplifies the research process.

It reduces the need for informed consent.

It limits the diversity of collected data.

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Young people's experiences of physical activity insecurity: a qualitative study highlighting intersectional disadvantage in the UK

• Caroline Dodd-Reynolds 1 ,
• Naomi Griffin 2 ,
• Phillippa Kyle 3 ,
• Steph Scott 2 ,
• Hannah Fairbrother 4 ,
• Eleanor Holding 5 ,
• Mary Crowder 5 ,
• Nicholas Woodrow 5 &
• Carolyn Summerbell 1  

BMC Public Health volume  24 , Article number:  813 ( 2024 ) Cite this article

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Intersecting socioeconomic and demographic reasons for physical activity (PA) inequalities are not well understood for young people at risk of experiencing marginalisation and living with disadvantage. This study explored young people’s experiences of PA in their local area, and the associated impacts on opportunities for good physical and emotional health and wellbeing.

Seven local youth groups were purposefully sampled from disadvantaged areas across urban, rural and coastal areas of England, including two that were specifically for LGBTQ + young people. Each group engaged in three interlinked focus groups which explored young people’s perceptions and lived experience of PA inequalities. Data were analysed using an inductive, reflexive thematic approach to allow for flexibility in coding.

Fifty five young people aged 12–21 years of different sexualities, gender and ethnicity took part. Analysis yielded four themes: PA experiences across spaces; resigned to a lack of inclusivity and ‘belonging’; safety first; complexities in access and accessibility. Young people felt more comfortable to be active in spaces that were simpler to navigate, particularly outdoor locations largely based in nature. In contrast, local gyms and sports clubs, and the school environment in general, were spoken about often in negative terms and as spaces where they experienced insecurity, unsafety or discomfort. It was common for these young people to feel excluded from PA, often linked to their gender and sexuality. Lived experiences or fears of being bullied and harassed in many activity spaces was a powerful message, but in contrast, young people perceived their local youth club as a safe space. Intersecting barriers related to deprivation, gender and sexuality, accessibility, disability, Covid-19, affordability, ethnicity, and proximity of social networks. A need emerged for safe spaces in which young people can come together, within the local community and choose to be active.

Conclusions

The overarching concept of ‘physical activity insecurity’ emerged as a significant concern for the young people in this study. We posit that PA insecurity in this context can be described as a limited or restricted ability to be active, reinforced by worries and lived experiences of feeling uncomfortable, insecure, or unsafe.

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Three in four adolescents do not meet global physical activity (PA) guidelines [ 1 ] and the annual global cost of inactivity is estimated to be in excess of $67·5 billion [ 2 ]. Adolescent inactivity is unequally distributed between nations, as well as within societies [ 3 ] and in England, only 47% of 13–16 year-olds met national PA guidelines in 2022/23 [ 4 ]. Physical activity is linked to 13 of the 2030 UN sustainable development goals (SDGs) including SDG3 good health and well-being, SDG4 quality education, and SDG10 reduced inequalities [ 1 ]. Through their global action plan, the World Health Organisation (WHO) [ 1 ] presents a mission to ensure access to safe and enabling environments along with diverse opportunities for PA, targeting a 15% relative reduction in inactivity for adults and adolescents by 2030. Despite this global focus, clear gaps in knowledge around policy development and implementation have been highlighted [ 3 ] with a need for supportive policies, environments, and opportunities [ 5 ] for children and young people to be active.

In this paper, we define physical activity as “people moving, acting and performing within culturally specific spaces and contexts, and influenced by a unique array of interests, emotions, ideas, instructions and relationships” ([ 6 ], p. 5). Like health, PA is heavily influenced by intersecting socioeconomic and demographic factors [ 7 , 8 ], yet PA has the potential to improve health equity [ 9 ]. In England, epidemiological data show that children and young people are less likely to meet PA guidelines according to low affluence, gender (girls and 'other'), and ethnicity (Black, Asian, Mixed and Other non-white/non-white British) [ 4 ]. Evidence suggests, however, that individual determinants of young people’s PA are variable and diverse and include previous PA, PE/school sports, independent mobility and active transport, education level and other health behaviours such as alcohol consumption [ 10 , 11 ]. A comprehensive systematic review of over 18-year-olds [ 12 ] reported 117 correlates of PA across a range of demographic, biological, psychological, behavioural, social and environmental factors.

The direct relationship between socioeconomic status (SES) and children’s PA is particularly unclear, with umbrella systematic review evidence [ 13 ] suggesting mixed findings in terms of whether SES is a determinant of PA, though the same study demonstrated a positive association between SES and PA for adults. Individual factors such as parental income and parental occupation, along with payment of fees/equipment did, however, show some evidence of an association with children and adolescent PA [ 13 ]. Whilst the authors note the small number of studies available for children and adolescents, a lack of causal evidence and differing measurement tools which might contribute to the uncertainty around SES and PA, we suggest also that quantitative evidence may well fail to capture the complexity of children and young people’s PA in different spaces. Indeed, a qualitative review of limited extant literature concerning socioeconomic position and experiences of barriers to PA [ 14 ] highlighted issues such as social support, accessibility and environment, and experiences (particularly gendered) of health and other behaviours, but importantly noted that those in low socioeconomic position areas had a good understanding of PA benefits. Better understanding is required regarding the complexity of PA experiences for children and young people living with disadvantage.

Within the PA literature, systems approaches are evolving to map and understand networks and mechanisms within complex systems, ultimately aiming to reduce health inequalities [ 15 , 16 ], and a systems-based framework for action forms a key component of the WHO’s global strategy [ 1 ]. To support this work, better understanding is needed regarding the dynamic, contextual mechanisms which underpin various agents in local systems [ 17 ], for example through understanding better young people’s personal, or direct ‘lived experiences’ of PA. Engaging in dialogue with young people at the heart of local communities, offers a deeper and more nuanced understanding of place-based PA challenges and opportunities.

In general, individuals transitioning from childhood to adulthood are underserved in PA research, yet experiences earlier in life have a lasting effect on adult health and health behaviours [ 7 ]. The 2016 Lancet Commission on adolescent Health and Wellbeing [ 18 ] recommended setting clear objectives for change, based on local needs, and highlighted a gap for young people at risk of being socially and economically marginalised, including LGBT + (lesbian, gay, bisexual, trans and others) groups. Adolescents and those on the fringes of adulthood (hereafter referred to as young people) therefore present a critical but wide-ranging group with whom we must seek to better understand PA inequalities, particularly in the context of widening place-based inequality and deprivation and the syndemic 'shock' of the COVID-19 pandemic [ 19 , 20 ]. Accordingly, we have applied the concept of intersectionality [ 21 , 22 ] to explore the complex and intersecting factors which influence access to, and experiences of, PA.

We have recently reported young people’s nuanced understandings of the malleable and dynamic relationships between socioeconomic circumstance and health [ 23 ] and in this paper, we focused on PA specifically. We explored young people’s experiences of PA in their local area, and the associated impacts on opportunities for good physical and emotional health and wellbeing. In doing so we worked with young people who were already at risk of experiencing social and health inequalities across England, UK.

This paper drew on data from a larger project [ 23 ] where a series of three interlinked qualitative focus groups were undertaken with six groups of young people who attended local community youth groups between February and June 2021. For the present study, we recruited a further group (December 2021) to ensure diversity in terms of gender and sexual orientation. In total, 55 participants aged 12–21 years, from seven youth groups across three regions of England took part. Each youth group took part in three interlinked focus groups exploring health and health inequalities (21 focus groups in total). Two regions were in the north of England (South Yorkshire (SY) n  = 2; North East (NE) n  = 3; one region was in the south of England (London (L) n  = 2). All regions fell within the most deprived quintile based on 2019 English indices of multiple deprivation (IMD) in England, with closer to 1 being more deprived. At participant-level, IMD quintile ranged from 1–3. The project commenced during the Covid-19 pandemic, where the UK experienced several lock-down periods. Due to social distancing restrictions, all focus groups were conducted online except for two youth groups which were in-person (one due to digital exclusion and another recruited once restrictions lifted sufficiently). Focus groups lasted approximately 1.5 h. Further details on methodological and ethical challenges and full procedures are described elsewhere [ 23 , 24 ]. Ethical approval was granted by the School of Health and Related Research (ScHARR) Ethics Committee at the University of Sheffield and the Department of Sport and Exercise Sciences Ethics Committee at Durham University.

We adopted a purposive sampling strategy, designed to encapsulate maximum variation in perspectives and diversity [ 25 ]. Our sample was guided by the breadth and focus of the research question(s); demands placed on participants; depth of data likely to be generated; pragmatic constraints; and the analytic goals and purpose of the overall project [ 25 , 26 ]. Our final sample included young people of different sexualities, gender and ethnicity across urban and rural and coastal areas (see Table  1 ).

Youth workers invited group members to participate and shared an information video and project overview before researchers attended youth group sessions to discuss the study, build rapport and provide more detailed information sheets.These sessions were all held online during lockdown, except for two in-person groups, which were visited by the researchers. Written consent was gathered for all participants and, where under 16 years, opt-in consent from parents/guardians was also gained. Participants were asked to provide basic demographic information including postcode to calculate IMD.

Data generation

Topic guides were developed [ 23 ], giving careful consideration to activities and language used around health inequalities. These were piloted and revised with two other partner youth organisations through early public involvement and engagement work. Youth workers helped facilitate sessions and at least four and two researchers were present for online and in-person sessions, respectively (NG, NW, MC, EH, HF, CDR, VE). The same groups of researchers worked across the 21 focus groups in different sites, to ensure consistency in process. All focus groups began with introductions and a warmup activity, followed by the main activity (in smaller breakout groups) and finally close and a cool-down activity. The three interlinked focus groups held with each youth group explored: (1) children and young people's understandings of health and wellbeing as a human right (via participatory concept mapping, see Jessiman [ 27 ] for an example), (2) children and young people's perceptions of the social determinants of health (sharing ideas about contemporary news articles relevant to health inequalities) and (3) children and young people's understandings of the ways young people can take action in their local area. Focus groups were recorded via encrypted Dictaphones and transcribed verbatim, with data anonymised at the point of transcription. Contextual field notes were taken by researchers.

Thematic analysis is a well-established approach to qualitative inquiry in health-related research that allows for the depth and richness of qualitative data to guide analysis [ 28 ]. We used an inductive, reflexive thematic approach to allow for flexibility in coding [ 26 ] and the desire to make sure our analysis was adequately capturing views of the young people themselves [ 29 ]. The approach was rigorously tested through the piloting of methods, regular analysis meetings, and sense-checking sessions (with participants) to validate themes [ 30 ]. For a full description of the original reflexive thematic analysis process [ 26 , 31 ] please see Fairbrother et al. [ 23 ]. In brief, an initial coding frame was developed, with key codes and overarching themes discussed (linked to young people’s perspectives on the relationship between socioeconomic circumstances and health) and agreed upon by the wider research team. Once these core themes were established, an additional in-depth phase of reflexive analysis was undertaken (NH, PK, CDR, CS) to specifically explore PA, which had arisen continually, but not been developed as a theme, across the initial analysis. As before [ 23 ], we emphasised a creative and active approach to the analysis which followed an inherently ‘interpretative reflexive process’ ([ 26 ], p. 334). CDR, PK and NG were immersed in the data, continually reflecting upon, questioning and revisiting during the analysis process Regular analysis meetings took place to reflect and discuss and a new coding framework was developed and agreed by CDR, PK and NG, from which with themes were developed. The qualitative data management software system NVivo-12 was used to support data management.

Our analysis yielded four central themes: (1) PA experiences across spaces; (2) Resigned to a lack of inclusivity and ‘belonging’; (3) Safety first; (4) Complexities in access and accessibility. Nevertheless, themes naturally interrelate and the overarching concept of ‘PA insecurity’ emerged as a significant concern for the young people who generously shared their personal experiences with us. Here each interlinked focus group session is denoted S1, S2, S3.

Physical activity experiences across spaces

The types of spaces in which young people felt able, or not able, to be active were crucial and formed the backdrop to their PA-related experiences and interactions with others. These are contextually linked here to later themes which provide further depth on how PA might or might not be enacted by young people within those spaces.

Across sites, there were differential responses in terms of ‘things to do’ in the local area. Inner city areas had fewer green and blue spaces but presented more organised opportunities in the locality. In rural areas young people had to travel to engage in social activities. Whilst in general there were positive attitudes towards PA, in the NE and SY, there was a perceived lack of things to do where they lived that did not cost money, or require private or unreliable public transport. A salient sub-theme developed around local opportunities for activity, with one group highlighting the resulting ease with which sedentary activities displaced other activities:

Facilitator : ‘Do you prefer to play on consoles or do you prefer to go outside and run around and have exercise’? NE2, S2 : ‘If there’s nothing to do, then I will stay in the house, but if there is something to do, then I might as well just go outside’.

At first glance, this apathy perhaps represents a lack of self-efficacy, often described as an individual-level determinant of PA. However, being physically active was far from simplistic and the young people described many associated challenges including closure of local amenities such as bowling and trampoline parks, with investment instead made in a nearby seaside town. For example, they described complexities around access to the nearest swimming pool. This was free in summer but not in the immediate locality, and thus required adult facilitation to enable the young people to travel to and access the pool, resulting in a structural barrier preventing them from taking part in something which was important to them within their existing social networks:

NE2,S2: ‘ Well just going out with friends and my dad saw that – I don’t know where – but he said, “Do you want to go?” “Yeah.” So he’ll get on the bus and he’ll go around and he got us in the baths ’. NE2,S2: ‘ He goes around…and picks up children ’.

Spaces that were simpler to navigate included outdoor locations, largely based in nature, which for a number of the young people evoked a sense of freedom and well-being: ‘ there’s a big, massive field and a couple of times a week I take my dog there so he can meet other dogs. Take him for a big walk… is good for your health. It’s good for my dog .’ (NE2, S1.)

Blue spaces were perceived similarly by those living near the coast: ‘ I like going to the beach… I just like the sea. It’s calm and obviously there’s a long way to walk as well ’ (NE2, S1).

Some indoor PA spaces, particularly swimming pools, were also described as places which evoked calmness and wellbeing. The following young person reflected on this in relation to how they felt in water:

‘ And it’s funny because when I first thought about the swimming pool, I didn’t think about it in terms of the physical exercise being good for me but obviously that is good. It’s much more that when I’m just completely submerged in water I feel very calm and I think it’s a bit of a shock to the system which can be nice, to be cold, suddenly very cold, and then get warmed up afterwards. So it’s kind of the pool and then also having a nice cup of tea when I get home after. For my mind and body I’d say… ’. (S1, S1).

Other indoor spaces such as gyms and sports clubs were spoken of in terms of being more for purposeful PA (i.e. exercise or sport) however the young people tended to speak less positively about their experiences, highlighting feelings of discomfort and of feeling self-conscious. In doing so, gender-based concerns often intersected: ‘ I did trampolining competitively…I was just getting to a point where I wasn’t comfortable. Because I was still having to wear the girl’s uniform …when you look at the differences between the uniforms, it's really stark ’. (NE1, S2). Similarly, in the gym setting, young people highlighted a perceived lack of security: ‘ Because gyms are enclosed spaces, there’s like dodgy blokes who are all like pumped and I’d rather not be around them. It’s just not my idea of fun ’ (SY2, S3). The ‘gym’ was repeatedly referred to in one focus group as negatively impacting upon self-esteem: ‘ I just hate it because like if you’re 16, the gym I used to go to had like a lot of older body building people so I’d feel like they were just watching me and I’d feel really uncomfortable about it’ , (SY1, S1). Conversations however also spoke of a need for inclusivity in the gym environment, noting feelings of pressure (as a female) ‘…if there’s guys looking at them they might not want them looking because obviously they’ll be looking in places they don’t want them looking. But also…we shouldn’t have to have girl-only gyms, everyone should be like integrated. ’ In the same conversation, concerns of racist behaviour were linked directly to the local area by another young person: ‘ And also racism as well, you could experience a lot of racism in gyms if you’re living in predominantly a white town.’ (SY2, S3).

The final space that permeated discussions, was an institutional one: the school or college environment. For the most part, narratives drew on personal experiences, often negative. For some, opportunities to be active in the institutional space had been removed altogether, something which was beyond their control: ‘ we didn’t do PE for about, a good three years because…we now needed to concentrate on our GCSEs… ’ (NE1,S3). Here, decisions made by adults in school, created barriers and the young people were aware of the gravity of lost opportunities to be active in the institutional space: ‘ …a lot of kids were missing out on that physical education and a way to exercise. That might have been students’ only way of exercise ’. This highlights how a lack of support from adults in positions of power can affect young people’s engagement in PA. Conversely, this could be positive intervention, illustrating how unequal distribution of support from teachers can impact significantly on young people’s PA experience in the education setting. In this example, one young person clearly highlighted a link between PA and psychological wellbeing:

‘ I managed to convince the teachers to let me do double rugby… two outside of school, one in school, like one club in school, two clubs outside of school and then two PE’s… because it’s an aggressive sport, I can get out all my aggression…I’m good with my team and I’m friends with all the people in it’ , (NE3, S3).

This theme illustrates that the young people were well aware of physical spaces in which they might be active but highlights the importance that young people attach to feelings of safety, security, and freedom, and how these can intersect with other characteristics. Physical activity spaces may be more conducive to positive mental health if they are larger and open, without interference from other people and where young people might feel less threatened by a perceived, or actual, need to conform.

Resigned to a lack of inclusivity and ‘belonging’

For many of the young people, there was a commentary around feeling excluded from PA, particularly sport, linked to gender and sexuality. This appeared to evoke a sense of resignation, even at such a young age, of having had to give up trying to access certain types of PA due to feeling a lack of inclusivity.

‘ If you feel that you can’t participate in a sport, then your physical health is going to decline, just from the sake of a trans person just trying to negotiate – if you go to a game. Which dressing room are you going to use? You avoid that completely to keep yourself safe or you have then out yourself to people. ’ (NE1, S2).

Such experiences extended to PE lessons, sometimes with a sense of finality and relief, with one trans young person seemingly ‘owning’ that exclusion:

‘ Participant 2: I’m not doing P.E…I also have it on my notes saying that I can’t do PE after going through physiotherapy. Facilitator 2: And is that good, do you think, because you don’t really want to do it? Participant 2: Yeah. ’ (NE3, S3).

For some trans and non-binary young people who were engaging with PA at school, there appeared to be some support and understanding from staff, but this was not enough on its own: ‘ teachers keep coming and talking to me about joining in with the boys and I’ve finally got my mum to agree to let me go. But the teachers keep saying they’ll talk to her, but then my mum keeps saying she’ll ring the school but she never does ’ (NE3, S3). Another young person who had not ‘ come out’ as non-binary fully yet in school further illustrated negative experiences with gendered PE lessons: ‘ So I go into the girls’ PE and I’m sick of it because I go in and it’s just like, “hi girls!!” and I’m just like just kill me now ’. (NE3, S3).

For others, non-gendered opportunities in PE were desirable, avoiding traditional school curriculum activities that implied boys and girls taking part separately. One participant admitted to having hidden in the toilets to avoid PE because: ‘ I despise football but it was the only thing we did for about six months ’ and suggested a need for more ‘ variety ’ and ‘ more inclusive sports .’ (NE1, S3).

Safety first

Young people’s access to and engagement with PA in certain spaces, was foregrounded by a need to feel safe in those spaces both in terms of physical and emotional safety. For many this was linked to fear of crime and substance abuse in the local park: ‘ You could literally go…and it’s probably got either a bag that’s had something in it, alcohol bottles or needles. It’s quite terrifying ’ (SY1, S2). Others highlighted particular situations which required avoidance: ‘… the dealing’s worse…that’s where all the fights happen…that basically…makes it more dangerous for people to be outside’ (L2, S2). When referring to the end of lockdown, and people buying drinking supermarket-bought alcohol ‘… outside in the open, like, and in huge groups…’ one participant noted a fear for safety outdoors which intersected with worries of racist behaviour…’ so, like, that’s one of the things that makes me a little bit, like, scared, like, I wonder, like, would they, like, say something, like, racist to me?’ (SY1, S2).

Active travel was also explained as problematic, but for some a necessity which required precautions for ‘girls’ who it was suggested (by a group of boys) should ‘ Put a key in their fingers ’. (NE2, S2) and careful planning for one participant: ‘ I had to find a whole new route home so I didn’t get harassed and beat up ’. (NE3, S3.5). For one group, avoidance of crimes in progress was critical: ‘ people constantly starting fires ’ (NE2, S1). Fear of harassment outdoors seemed entrenched for many, sometimes linked to gender: ‘ Catcalling, and being followed… harder to feel safe… even in…broad daylight ’ (L2, S3), and other times a generational influence on feelings of fear in the local area: ‘… after a certain time, 4 or 5 o’clock, my nan used to say “time to go back now” because she knew that that’s when all the dodgy people would come out really, even if it wasn’t necessarily dark earlier. ’ (SY1, S1).

For some, fears were more nuanced and centred around avoidance of bullying and transphobia: ‘ I think, particularly for trans and LGBTQ people, it’s difficult to feel secure in a sport … I don’t feel safe going to the club because if they find out I’m trans, they’ll just pick me out ’ (NE1, S2). This extended from access to sports clubs, to open spaces where young people in one LGBTQ + youth group were in agreement about fears of harassment based on their gender or sexuality:

Facilitator 2: When you’re walking around and you’re out and about, how do you feel? Participant 5: I feel like I’m in danger and scared….who feels unsafe out and about? Participant 2: I do. Participant 1: I do too. (NE3, S3)

Together, these points exemplify a need for safe spaces in which young people at risk of marginalisation and living with deprivation can come together, connect within the local community and choose to be active: ‘ Like, because you can be at a park and then you can get harassed easily… You could barely go [to a park] without that [harassment] happening…Makes me not want to leave my house .’ (NE1, S1). The youth groups themselves were seen as places of familiarity ‘ I’ve been here for ages ’, where young people can ‘ socialise, have fun, play a range of games, [make] new friends and bonding[sic] ’(NE2, S1) in a safe environment where social connections can be made. As such, youth groups might be pivotal in providing the kind of leadership and support required for PA access and engagement, perhaps even just in terms of open space provision: ‘ Even though we have the consoles, we don’t really use them that often. We’re mostly just outside… ’ (NE2, S1), as well as facilitating the social networks needed for young people to even consider PA.

Complexities in access & accessibility

Whilst intersecting elements of PA access feature throughout other themes, it is important to draw specific attention to intersecting barriers relating to accessibility, including disability, Covid-19, affordability, and proximity of social networks with whom to engage in PA. In illustrating this, we draw on some of the issues highlighted in earlier themes.

Provision of physically accessible green spaces with appropriate facilities and equipment was an intersecting issue linked to crime and affordability, in the experience of one young person living in an area of poverty:

‘ …where I live and work, like football is huge. We've got a few football pitches, you’ve got to pay to play certain places especially for young people, so it's very, very difficult and what they tend to do, they’ll climb the cage gates and that leads to trouble and…stuff. If we had access to open free football pitches, that would be quite beneficial…I don’t think there’s…enough active stuff. Over the last couple of years, I've noticed they put in like monkey bars and other gym stuff [in parks]. ’ (L1, S1).

In some discussions, disability was an intersecting issue, adding to the complexity of PA access and highlighting affordability and a desire to be active with peers:

Participant 4: It’s not easy [to get about town with transport] if you have a hearing impairment and I know that from experience Participant 1: But it can be easy though, depends on who your friends are, so me and my friends kind of live close [ind] and with covid, we have friends that kind of live further an it’s a little bit harder [ind] Facilitator so why it is harder, what stops that Participant 1: It’s probably either their parents not letting them go out further to come meet us [ind] and they may not be able to afford to…go out (NE2, S1)

This theme illustrates that complexity of intersecting barriers to PA appears particularly pronounced and nuanced for some of these young people. As a result, solutions are likely to be similarly complex..

Considering the naturally intersecting themes in this study, we posit that the overarching concept of ‘physical activity insecurity’ emerged as a significant concern for the young people who generously shared their personal experiences (see Fig.  1 ). Physical activity insecurity is not an established term within the literature. To date and to the best of our knowledge, just one paper has linked it to families’ low readiness to provide opportunities for PA, where food insecurity was already being experienced: an “inability to provide sufficient health-promoting MVPA for children” ([ 32 ], p. 41). We note the distinction with food insecurity, which is well-recognised and formally defined as “limited or uncertain availability of nutritionally adequate and safe foods or limited or uncertain ability to acquire acceptable foods in socially acceptable ways.” ([ 33 ], p. 193). Here, we propose a new conceptualisation for PA insecurity, beyond simply providing a space for PA to be ‘secure’ and in recognition of the complexity of PA as a behaviour which is navigated cerebrally, socially, and politically within a situated space [ 6 ]. Young people in our study were very much aware of the spaces and opportunities for PA and associated potential benefits but were challenged by how the wider social and physical environment responded to them and reinforced feelings of inaccessibility. Here we draw on Friere’s concept of critical consciousness [ 34 ], which refers to an individual’s awareness of oppressive systemic forces in society, a sense of efficacy to work against oppression, to illustrate that instead of internalising the inaccessibility of certain spaces, young people actively highlighted the ways in which spaces were not set up with their access needs in mind. We thus define PA insecurity as a limited or restricted ability to be active, reinforced by worries and experiences of feeling uncomfortable, emotionally or physically unsafe. We suggest this can be as a result of oppressive practices, lack of inclusion and disadvantage. Our findings suggest that PA insecurity can be experienced by any young person at risk of experiencing marginalisation and living with disadvantage, particularly where intersectional barriers overlap. However it seems is particularly nuanced for transgender and non-binary young people, for example in dealing with harassment and/or exclusion due to gender discrimination. We suggest that the young people in our study may not ever be able to contemplate PA until they feel safer, supported and included by society. We explore this further, later on the discussion, in terms of existing theory related to feelings of oppression and discrimination in disablism [ 35 , 36 ].

Physical activity insecurity experienced by young people

Challenges linked to gender and sexuality within a sporting context have been widely documented in the sociology literature, for example Anderson’s [ 37 ] inclusive masculinity theory suggests a trend towards reduced sexism and “homohysteria” in recent years. However, Pope [ 38 ] argues that though men’s attitudes to women in sport may be slowly changing for the better, overtly misogynistic masculinities are still prominent. Whilst our work was not grounded in theories of gender and sexuality, our sample comprised one trans masculine, one gender-fluid, four non-binary, nine trans males, 19 female and 21 male participants (Table  1 ) and our data certainly highlight that non cis-gendered individuals felt unable to be their true authentic self around PA. Little else is understood about the lived experiences of LGBTQ + youths in the PA domain, and what exists tends to consider school PE/sport provision [ 39 ]. Research does however support the notion that sexual and gender minority youths, particularly transgender young people, avoid PA settings due to feeling unsafe and uncomfortable [ 40 , 41 ]. Herrick and Duncan [ 42 ] similarly highlight a need for safe, inclusive PA spaces for LGBTQ + adults, and also a need for an intersectional approach to explore PA complexity along with avoidance of elitist and inaccessible terms such ‘athlete’.

Intersectionality highlights the multiple intersecting identities of individuals and groups and how they interact and can compound each other in relation to oppression and inequality [ 21 , 22 ]. In our findings, intersecting socioeconomic and demographic challenges raised by participants included deprivation (as per our sampling strategy), ablesim, crime and safety, affordability, and racism, as well as inequalities related to gender and sexuality. The young people in our study were cognisant to the ways in which different vulnerabilities can interact and compound each other, for example, exclusions related to homophobia, transphobia and ableism being further compounded by income inequality. They also discussed the links between accessibility and place, where some young people have greater opportunities to be involved in PA due to where they live, with closer proximity meaning greater access and affordability. Participants also reflected on how experiences of racism, sexism and/or homophobia in PA spaces increased the likelihood of disengagement. The young people who accessed LGBTQ + specific youth groups reflected on opportunities afforded to them to play or be active with others like them in a safe space, but highlighted that those space are not accessible to all, due to limited capacity and often a need to travel (affordability). Further insight into wider health inequalities as experienced by the LGBTQ + groups can be found in our linked paper by Griffin et al. [ 43 ]. In the present paper, we highlight a need to understand the complex ways in which intersectional disadvantages can intersect and compound each other, and in doing so, exacerbate PA insecurity.

We suggest that our findings of largely internalised feelings of insecurity, discomfort and a lack of safety represent facets of oppression and undermined psycho-emotional wellbeing. As such, there appear to be parallels with the concept of ‘psycho-emotional disablism and internalised oppression’ [ 35 , 36 , 44 , 45 ] where “internalised oppression…can undermine someone’s psycho-emotional well-being and sense of self” ([ 44 ] p. 24). Reeve [ 44 ] further notes that the emphasis on removing psycho-emotional barriers should not lie with the individual, but rather with society. We posit that this has important implications for our findings. Reeve [ 45 , 46 ] describes how indirect psycho-social disablism can reflect experiences of structural barriers, for example the “experience of being faced with an inaccessible building can evoke an emotional response such as anger or hurt at being excluded” ([ 46 ], p. 106). In our study such barriers are described by young people as e.g. changing rooms and uniforms which (drawing on Reeve [ 47 ]) alone might be characterised as solely socio-structural barriers to PA, if we did not have insight into how these experiences made the young people feel marginalised or resigned to inactivity. We suggest that the young people in our study similarly evoked elements of internalised oppression and discrimination in relation to PA, particularly in terms of feeling resigned to a lack of inclusivity and belonging. Importantly, we did not ask the young people in our study about their disability status, and therefore do not apply this theory through a disability lens per se. Rather, we consider here how psycho-emotional disablism might be applied through an intersectional lens, given the sharp similarities in challenges experienced and internalised by our young people. Given this, we suggest that simply adapting or removing structural barriers is insufficient to enable safe PA access for these young people, particularly those identifying as LGBTQ + . Researchers, practice partners and policy-makers need to work with young people to better understand their experiences, and to facilitate trustworthy relationships with PA within society.

Our findings also suggest that compassion, understanding and allyship of a trusted adult, may be critical for young people to feel safe and secure and thus give their trust and permission to engage in PA. Support from adults in positions of power had a strong influence on young people’s (lack of) engagement in PA, for example teachers in the institutional space. This point is supported by work which explored the relationship between a trusted adult and adolescent health and education outcomes [ 48 ], where young people outlined the need for mutual respect, patience and willingness of an adult to go the ‘extra mile’ in enabling them to engage in positive health behaviours. One US-based group has gone as far as to develop bespoke physical education teacher support around inclusive athletics for LGBTQ youth [ 49 ], though how this might work in practice across multiple PA settings needs yet to be explored. We suggest that young people, particularly those experiencing intersectional barriers to PA, should be included in decisions relating to PA policy and design of PA spaces themselves. This may in the longer-term reduce reliance on trusted adults.

Understanding what a secure PA space might actually look like for young people with shared challenges and/or protected characteristics is a clearly needed next step. Yet there exists a dearth of contextual evidence around how young people at risk of experiencing marginalisation and living with disadvantage experience PA in their local environment. More broadly, we acknowledge a need for whole system action to improve young people’s PA experiences in the spaces that they have access to. This extends beyond provision of what might be perceived physically safe spaces (e.g. safe playing, walking or cycling infrastructure) to inclusive language and action linked to changing facilities, clothing, and creating opportunities for PA within existing trusted networks such as youth groups. Though, as we have noted, responsibility for inclusivity should not lie with the individual, hearing the voices of young people in terms of who is needed, where they are needed and how spaces could be made more inclusive, is critical in this respect [ 50 , 51 ].

In the UK, the PA landscape is driven by ‘top-down’ national policy agendas [ 52 ] and responsibility for young people’s PA provision is devolved across numerous sectors at local level. Given gaps in knowledge of PA policy development and implementation for young people [ 3 ] and the need for supportive policies, environments and opportunities to strengthen those national policy efforts [ 5 ] we suggest that further work might look to local groups and networks to co-produce, with young people at risk of marginalisation and living with disadvantage [ 53 ], guidance on what secure PA spaces might look like and who is required to facilitate them. Such work must carefully consider the views of young people, trusted adults (e.g. youth workers) and others involved in provision of PA such as service providers, teachers and local authorities.

Limitations

Fieldwork took place during periods of Covid-related lockdown, and some comments from participants may reflect challenges which were exacerbated at this point in time. Though there was ethnic diversity across the overall sample, this was largely limited to the southern sites. We also acknowledge potential limitations of recruitment through existing youth organisations, which may exclude the voices of young people who are unable to engage with this provision. Nevertheless, as noted by Fairbrother et al. [ 23 ], working with youth groups enabled us to have the support of Youth Workers in refining topic guides and facilitating participant engagement, as well as providing an invaluable source of trusted support for participants [ 24 ].

Young people were recruited through youth groups and trusted youth leaders were very much part of the process. In each sampling site, the same group of young people engaged in three focus groups, and the building of rapport through this process provided open and honest reflections. We note the rigour of analysis as a strength in this work, particularly the sense-checking of themes with the young people.

Future research

Future research should build on these findings and work with young people at risk of experiencing marginalisation and living with disadvantage to explore what safe PA spaces and associated PA policies might consist of. Further diversity in sampling is also important. Finally, consideration should be paid to whether PA insecurity can be measured, for example via an assessment tool.

We argue that the voices of young people at risk of marginalisation and living with deprivation, including LGBTQ + youths, must be heard in the context of their own embodied PA experiences, in order to mediate PA inequalities. Young people articulated a clear and in-depth understanding of the spaces in which they experience (or do not) PA. They provided a powerful narrative which suggests PA insecurity as central to their lived experiences of PA, often highlighting intersecting barriers to PA which resulted in feelings of internalised oppression and undermined psycho-emotional well-being. We highlight a need for accessible and affordable safe spaces within the local community, where young people can come together and have the ability to be active. Such safe spaces will likely require facilitation and support of trusted adults in terms of helping to manage the complexity of challenges associated with PA for these young people.

Availability of data and materials

The datasets generated and analysed during the current study are not publicly available due to privacy reasons but are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to thank the members of our stakeholder steering group for their support and input throughout the project. We thank members of the youth organisations who piloted and provided feedback on our data generation tools and methods. We also thank Emily Tupper and Vanessa Er who provided support for some of the focus groups and Matt Egan for his involvement in the wider project. Finally, we thank the young people and youth organisations that took part in the research for their contributions, insights and enthusiasm.

This project was funded by the National Institute for Health and Care Research (NIHR) School for Public Health Research (SPHR) (grant reference number PD-SPH-2015). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

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Caroline Dodd-Reynolds & Carolyn Summerbell

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Newcastle University Business School, Fuse, Newcastle University, Newcastle, NE1 4SE, UK

Phillippa Kyle

Health Sciences School, University of Sheffield, Sheffield, S10 2LA, UK

Hannah Fairbrother

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CDR was involved in conception and design of the study, data collection and analysis, drafting of manuscript; NG was involved in data collection and analysis; PK was involved in data analysis; SS was involved in data analysis; HF was involved in conception and study design, data analysis; EH was involved in data collection; MC was involved in data collection and analysis; NW was involved in data collection and analysis. CS was involved in conception and design of the study, data analysis, drafting of manuscript. All authors edited drafts and agreed the final submitted manuscript.

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Correspondence to Caroline Dodd-Reynolds .

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Ethical approval was granted by the School of Health and Related Research (ScHARR) Ethics Committee at the University of Sheffield, and the Department of Sport and Exercise Sciences Ethics Committee at Durham University. All methods were undertaken in accordance with the relevant guidelines and regulations of these institutions. All participants involved in the study provided informed consent and those under 16 also provided parental/ guardian consent. All participants were made aware that data collection would remain anonymous and that they would not be identified. No direct quotes used in the study are attributed or traceable to any named individual.

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Dodd-Reynolds, C., Griffin, N., Kyle, P. et al. Young people's experiences of physical activity insecurity: a qualitative study highlighting intersectional disadvantage in the UK. BMC Public Health 24 , 813 (2024). https://doi.org/10.1186/s12889-024-18078-9

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Expert opinion from IOE, UCL's Faculty of Education and Society

• Helping social science undergraduates to navigate their first piece of qualitative research

By Blog Editor, IOE Digital, on 20 March 2024

Credit: AS Art media / Adobe

Many social science undergraduate programmes include modules where students are asked to carry out a small piece of qualitative research. This usually takes the form of interviews with real people. Although sample sizes are usually quite small (2-5 people), getting to grips with the resulting data can nevertheless be daunting for a novice researcher.

This blog post outlines the guidance I use with my own BA students, which, they tell me, is a clear and an effective method of showing them how to organise and begin to analyse interview data. The beauty is in its simplicity.

The approach in outline

Qualitative social research involves:

• collecting data,
• familiarising yourself with the data,
• organising the data,
• coding patterns or units of meaning, including looking for similarities and differences,
• finding quotations, and,
• presenting findings and conclusions.

The process I advise for analysing the data follows four stages and is based on four tables:

• Stage 1: Preparation
• Stage 2: Summary of responses
• Stage 3: Recording similarities and differences and coding units of meaning
• Stage 4: Adding quotations.

The whole point of analysing the interviews is to enable the researcher to present their findings and make conclusions. The tables provide a quick overall view and will make life considerably easier by breaking down the process of analysis into manageable chunks.

Set out below is an illustrative example from a small piece of research that asked students about their career plans after graduation.

The process stage-by-stage

Table 1: preparation.

This involves drawing up a table of interviewees and interview questions. The student adds however many interview questions they used down the side. This process is a further prompt to the student to check that their questions will enable them to answer their research question(s).

Table 2: Summary of responses

The student listens to the data file of each interview and records what they regard as the key points from the responses in short note form. The table format helps them to organise these notes in preparation for the next stage.

Table 3: Looking for similarities and differences and coding units of meaning

The student looks across the interviews in order to pick out and summarise the notable similarities and differences in the participants’ responses. These can be summarised in a row below or in an additional column at the side. The student can also begin to look for simple codes, or units of meaning. This coded text can be marked in some distinctive way (e.g. coloured-coded). The codes can be used as themes to organise the findings.

Table 4: Adding quotations

The student re-listens to the interviews and makes a judgement about where they feel they have interesting data (in the form of verbatim quotes) that provides answers to their research questions. They then transcribe this text word for word. The quotations will probably be a few lines, but they make the findings feel more life-like and real, and it also gives the participants a voice. Importantly, this means that the student does not have to transcribe the whole interview. The quotations will also produce a list of new codes, which will keep on growing (e.g. ‘aspirations’, ‘internships’, ‘financial freedom, ‘small steps’). Students can move and keep (or park) each quotation under a particular code in a separate document.

Of course, students don’t have to use tables; some students prefer to use a spreadsheet instead, especially when they have a larger sample of interviewees.

I have developed and refined this approach over a few years with students working on undergraduate dissertations. Although there are many texts available that budding social researchers can turn to, this method that I have devised will help students who have collected data from interviews to begin to figure out what to do with it.

Adapted from: Jon Swain and Zhixiu Chen (2024) ‘A Simple Way to Organize and Analyze Data from Qualitative Interviews Using Thematic Analysis’, Sage Research Methods Datasets Part 1. DOI: https://methods.sagepub.com/dataset/qualitative-interviews-thematic-analysis

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• Open access
• Published: 21 March 2024

Transforming health care systems towards high-performance organizations: qualitative study based on learning from COVID-19 pandemic in the Basque Country (Spain)

• Ane Fullaondo 1 ,
• Irati Erreguerena 1 &
• Esteban de Manuel Keenoy 1  

BMC Health Services Research volume  24 , Article number:  364 ( 2024 ) Cite this article

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The COVID-19 pandemic is one of the worst health catastrophes of the last century, which caused severe economic, political, and social consequences worldwide. Despite these devastating consequences, lessons learned provide a great opportunity that can drive the reform of health systems to become high-performing, effective, equitable, accessible, and sustainable organisations. This work identifies areas in which changes must be encouraged that will enable health systems to deal effectively with current and future challenges, beyond COVID-19.

A realist design was chosen, based on qualitative data collection techniques, content analysis and triangulation to identify key domains of organizational interventions behind the changes implemented to react to the COVID-19 pandemic in the Basque Country. Twenty key informants were used as an expert source of information. Thematic analysis was done using the Framework Method.

The analysis of the interviews resulted in the identification of 116 codes, which were reviewed and agreed upon by the researchers. Following the process of methodological analysis, these codes were grouped into domains: seven themes and 23 sub-themes. Specifically, the themes are: responsiveness, telehealth, integration, knowledge management, professional roles, digitisation, and organisational communication. The detailed description of each theme and subtheme is presented.

Conclusions

The findings of this work pretend to guide the transformation of health systems into organisations that can improve the health of their populations and provide high quality care. Such a multidimensional and comprehensive reform encompasses both strategic and operational actions in diverse areas and requires a broad and sustained political, technical, and financial commitment.

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The 2019 coronavirus disease pandemic (COVID-19) is one of the worst health catastrophes of the last century; it has caused devastating effects on the health of populations in some countries and severe economic, political, and social consequences in many more [ 1 ]. In all countries, regardless of income level, the pandemic has had a direct impact on health systems. Specifically in the Basque Country, 761,000 confirmed cases of COVID-19 and 7,049 related deaths are registered as of July 2022 [ 2 ].

Today, in the wake of the pandemic, two types of pressures are converging and providing an unparalleled framework for progress in health care reform. On the one hand, more than ever before, citizens are demanding that health care providers are prepared to deal effectively with crises like that caused by COVID-19 [ 3 ] while providing adequate attention to other health conditions, including post-acute sequelae of COVID-19 (long COVID) [ 4 ]. And, on the other hand, health has become a priority in political agendas that must translate one-off experiences into strategic actions at the system level. Despite efforts to maintain health services, disruptions of varying magnitude and duration were found in every type of health services during the pandemic. In addition to implementing innovations in diagnosis, treatment and vaccination technologies [ 5 , 6 ], to deal with the original virus and the different variants [ 7 ], health systems introduced organizational changes to respond to the challenges. They include expanding existing programs capacity, providing outreach to patients at increased risk for adverse outcomes, reorganizing clinical processes and pathways, increasing usage of digital health technologies for regular consultations, reallocating healthcare professionals, optimizing their infrastructure by redesigning existing space for clinical use, or increasing home care [ 8 , 9 , 10 , 11 , 12 ]. Health services must take advantage of the momentum generated and move towards a real transformation that will enable them to be high quality entities that maintain or improve the health of their populations. Historically, in healthcare, periods of crisis and adversity have been important catalysts for innovation [ 13 , 14 ]. But, in addition, the actions and changes that health services had to implement to cope with the pandemic can serve as a basis for learning, improving, and addressing many of the old challenges and those that lay ahead [ 15 ].

High-quality care implies comprehensive assessment, detection of asymptomatic and co-existing diseases, accurate diagnosis, appropriate and timely treatment, referral when necessary to other care settings, the ability to monitor the patient, and adjust the course of treatment according to the patient’s progress. Equally, equity in access to high quality care must be guaranteed, safeguarding the sustainability of the system [ 16 ]. Furthermore, health systems must consider the needs, experiences and preferences of individuals and their right to be treated with respect [ 17 ]. In short, we are talking about reforming health systems to achieve better outcomes in what is called the Quadruple Helix (better care for individuals, better health for the population, better experience for clinicians and lower costs).

The Basque Health Care (Osakidetza), is a National Health System (NHS) Beveridge type system with good performance indicators [ 18 ], has been highly stressed by the Severe Acute Respiratory Syndrome Corona Virus 2 (SARS-CoV-2) pandemic and has implemented changes to respond to the challenges imposed [ 19 , 20 ]. The purpose of this work is to identify the main domains behind the relevant changes that could be maintained and/or expanded to contribute to improve quality, efficiency and sustainability of the system in front of the present and future challenges.

This qualitative study was carried out in the Basque Country (Spain) (population of 2.2 million), with participants from the Basque Department of Health and the Basque Public Health Service (Osakidetza). The research aimed to understand what, how and why organisational change actions occurred to respond to the demands and challenges that the pandemic brought to health services [ 21 ]. Reporting adheres to the Consolidated Criteria for Qualitative Research [ 22 ] (Additional file 1. COREQ checklist).

Study design

A realist design [ 23 ] was chosen, focused on the manifest rather than latent interview content, based on qualitative data collection techniques, content analysis and triangulation to identify subject matters organized in themes and sub-themes behind the changes implemented to react to the COVID-19 pandemic in the Basque Country. Key informants were used as an expert source of information.

Participants

Participants were identified among those with a high level of involvement in the leadership, management, and delivery of public health services (Department of Health and Osakidetza) during the COVID-19 pandemic in the Basque Country (between March and December 2020). Potential informants were selected among professionals with different responsibilities at different levels of the health system who had a professional relationship with the first author (AF). They were selected by convenience sampling, representing different experiential types [ 24 ] and interviewed between October and December 2020. Their profiles and expertise covered different perspectives, such as planning, management, information systems, quality, innovation, health service delivery, and social and health care. An introductory email was sent explaining the study by AF, who had a special interest in exploring how health system reform should be oriented as she is the scientific coordinator of the Basque Country’s health services research institute. Interested informants were then invited for an interview by the first author, who presented authors´ interest in the research topic. Recruitment continued until there were enough representatives from all three levels: macro level, Basque Department of Health, and Central Services of the Basque Public Health Service - Osakidetza ( n  = 7); meso, managers of Integrated Health Organisations and Emergencies ( n  = 7); and micro, health professionals (clinicians and nurses) ( n  = 6). Twenty key informants (11 women and 9 men) were contacted and all of them agreed to participate in the study. Prior to the interview, participants were informed about the objectives and characteristics of the study, the confidential handling of data (identity protection) and that participation was voluntary and that they could withdraw from the study at any time without explanation. All interviewees agreed to these terms and gave their consent.

Semi-structured interviews were conducted by teleconference or telephone by AF (PhD, scientific coordinator and senior researcher, female) and IE (BD, junior researcher, female) [ 25 ]. The structure of the interviews was based on a prior analysis of the issues in the literature and the authors’ experience [ 26 ]. Interview topics, not piloted, explored the redesign of healthcare processes and coordination between healthcare settings, the adaptation of infrastructures and technological services, and the organisation and development of staff during the COVID-19 pandemic (Additional file 2. Interview guide). The ideas expressed by the interviewees were analysed from the perspective of what actions can enhance health system transformation. The participants were alone at their place of work during the interview. Interviews were audio recorded and ranged in length from 30 to 90 min (the average length was 45 min). No interviews were repeated. Field notes were taken during the interviews. Interview transcripts were not returned to participants for comment or correction. No more interviews were hold since data saturation, a notion of informational redundancy, was reached [ 27 ].

Thematic analysis was done using the Framework Method. [ 28 ] This approach identifies commonalities and differences in qualitative data, before focusing on the relationships between different parts of the data, thus seeking to draw descriptive conclusions grouped around themes. The analysis was conducted following different stages: familiarisation with the interview, coding, grouping the codes into categories, summarising the data by categories and interpreting the data. To obtain an overall understanding of the content related and to achieve immersion, audio recordings of interviews were listened several times.

Inductive coding of the interview data was performed by AF and IE, and themes and sub-themes were refined throughout the process. During the research, the process of reflexivity was considered, forcing the research team to re-examine their position in relation to the methodology, the theory, the participants, and themselves. Two types of triangulation were used to improve the analysis and interpretation of the findings, and to enhance the credibility of the results. Firstly, data triangulation using various data sources (policy makers, managers, health professionals) was performed. Secondly, triangulation of researchers by involving three researchers to compare, complement and discuss observations, was done [ 29 ]. Participants were not asked to provide feedback on the findings.

The analysis of the interviews resulted in the identification of 116 codes, which were reviewed and agreed upon by the researchers. Following the process of methodological analysis, these codes were grouped into different domains: 23 sub-themes, and these in turn into 7 themes (Additional file 3. Codes). Specifically, the themes and sub-themes (in brackets) are: responsiveness (planning, governance, organisational elasticity and staff flexibility), telehealth (telecare, telework and telecoordination), integration (collaborative networks, teamwork, coordination with Public Health and partnerships), knowledge management (intellectual capital, scientific evidence, and training), professional roles (strengthening and innovation), digitisation (strategy, data analytics, automation and interoperability) and organisational communication (management, content and channels) (Fig.  1 ). Quotations coming from the interviews are framed into the themes and sub-themes which have led to the results described in the following sections (Additional file 4. Quotations).

Responsiveness

Within the framework of responsiveness, four sub-themes were identified: planning, governance, organisational elasticity, and staff flexibility.

“Immediacy and uncertainty have meant that the way of working has been reactive. We must not be so reactive; we must hold on to the pull and have tools for decision-making.” Manager of the Central Services of Basque Public Health Service - Osakidetza.

Planning allows a system to act proactively and cope with different challenges. The ability to plan must be structural and systemic. It facilitates the re-design of organisational models that enable rapid adaptation to changing situations. It comprises testing or simulation of actions in potential scenarios and the development of tools that facilitate decision-making and continuous monitoring of needs. The system must be prepared and organised to deal swiftly, and effectively in uncertain situations where immediacy of response is required. A planning unit within the organisation can assume the aforementioned functions.

“The fact that there was a single directorate facilitated decision-making and coordination between care areas. The Primary Care teams and middle management acted in an efficient and agile manner.” Manager of Integrated Healthcare Organization - Osakidetza.

Governance must incorporate an organisation and/or person in a leadership role, with the ability to set direction, define strategies and encourage change and creativity. Participatory governance is essential to ensure coordination between organisations and guarantees working closely and aligned. Enhancing the feeling of an integrated corporation allows for a conversational relationship with different actors responsible for the provision of care. At the same time, the fact that the different areas of care work in unison, facilitates joint decision-making, which translates into agile and effective action by middle management. For example, in Osakidetza, the coordination between the General Directorate and the management teams of the Integrated Healthcare Organisations (IHOs) was facilitated by having a unified Management Executive in IHOs, covering Hospital and Primary Health Care.

“Mobility of professionals: there must be regulations that allow this, at least a reflection on how resources can be mobilised.” Clinician. “Inter-organisational collaboration is to be valued. Patient flow between organizations, it has been much willingness to collaborate and share knowledge.” Clinician.

Organisational elasticity means that a health system has the capacity to adapt to dynamic situations. Flexibility can be reflected at different levels. The first refers to the smoothness in restructuring services, i.e., in a natural and frictionless way, for example, health professionals from certain specialties can be available to cover other professional roles if the situation requires it. The second level considers the ability of physical structures to adapt as needed. One case would be the possibility of expanding the number of hospital beds. Another would be the adaptability of spaces, so that they can be used for a different purpose than the original one. The adaptability of infrastructures must be conceived at the time of their construction design. The third level is the flexibility in the provision of care, specifically in terms of location, schedules, and timetables. Thus, the portfolio of services could be structured in such a way that professionals could also carry out their work from home and in time slots other than the pre-established shifts, or by assigning face-to-face and telematic activities to specific schedules. Finally, the fourth is the capacity to promote mobility and the flow of patients between organisations to optimise their care. It allows supply to be dynamically and continuously adapted to demand, not only in terms of volume, but also in terms of type or intensity of care. This avoids peaks of saturation in the organisations where under-utilisation of others coexist. Organisational procedures and regulations should favour such mobility. This would involve, for example, setting up direct corporate circuits in Osakidetza to speed up the referral of seriously ill patients from regional hospitals to tertiary hospitals or a centralized management of Intensive Care Units use.

“It is necessary to increase the size of the Primary Care nursing staff so that they can take on other tasks in their portfolio of services: control and monitoring of chronic patients, assessment, and monitoring of minor illnesses. This is now forced, but with planning it can be done.” Manager of Integrated Healthcare Organization - Osakidetza.

Staff flexibility implies having healthcare professionals available when and where they are most needed. It requires proper planning and adaptation of the workforce. It includes designing the portfolio of services for each of the profiles, optimising resources, and assigning functions that add value to the professional and to the patients. Altogether, it will prevent physical-emotional exhaustion and frustration of professionals. It means managing human resources with a flexible and corporate scope. It implies favouring expansion and contraction according to needs, the mobility of professionals, regardless of the place of recruitment, and the adaptation of professional roles and profiles. The expanding role of nurses in care is a clear example. Flexibility requires prior planning and a regulatory framework that allows for adaptations according to demand. Thus, for example, the current procedures for recruiting professionals in the public health system are recognised for their lack of speed. They should be renewed to be able to incorporate professionals in a timely manner.

In telehealth, three sub-themes were identified: telecare, telework and telecoordination.

“Telephone appointments are useful. They need to be promoted. Now it is necessary to balance the telephone and face-to-face consultations.” Clinician. “The humanisation of the use of technology must not be lost.” Nurse.

Telecare comprises remote or non-face-to-face consultations, by telephone or videoconference, and telemedicine. They constitute a novel and potentially beneficial way of providing care for patients, if they meet certain organisational and quality conditions. The management of non-face-to-face consultations (telephone or video-consultation) must be protocolised, systematised and integrated into the usual healthcare activity of the health service. There must be complementarity and flexibility between remote care and face-to-face consultations, establishing criteria at the organisational and corporate levels that establish when each type of care should and should not be used. Moreover, it must be flexible enough to ensure that it is responsive to patients’ preferences and possibilities and does not become a barrier to the provision of accessible, humanised, and equitable care. For example, patients may be unable or unwilling to purchase the devices, may not have the necessary connections, or may not be digitally literate enough. Successful examples of non-face-to-face group sessions of patients, even with very different profiles in terms of technology skills, reinforce the promising future of telecare. Healthcare professionals can assess which type of care (face-to-face or remote) is best for each patient at any given time, depending on their needs and situation. The request for complementary tests, for example, could be managed remotely and, depending on the results of the tests, the professional would assess the format and priority of the next consultation.

“Teleworking: pros and cons. It is necessary to determine when and when not to telework.” Manager of the Central Services of Basque Public Health Service - Osakidetza.

At the level of healthcare organisation, telework can allow the relocation of healthcare professionals, while maintaining the same level of quality of care. The introduction of telework in the health system is a valid option for certain profiles and for the completion of certain activities, such as, the review of reports, patient follow-up or telephone consultations. The implementation of telework requires defining which tasks can performed from home, establishing specific timetables, and ensuring the necessary means for professionals.

“The idea of a call centre formed by nurses and doctors in the care organizations should be retained, homogenised, to provide more accessible and faster care.” Manager of the Central Services of Basque Public Health Service - Osakidetza.

Telecoordination allows the organisation, in a non-face-to-face manner, of the most appropriate response to citizens’ demands. It is orchestrated around call centres. They can organise the type of response of the health services, offer recommendations for certain health problems that do not require the intervention of a healthcare professional in person, and participate in the follow-up and monitoring of health programmes or help with procedures (appointments, administrative or other). They can be a useful complementary service. For example, a centre staffed by nurses with or without a medical doctor could increase accessibility and speed of care provision. Professional in the call centre could relieve other health actors who are overwhelmed at specific moments, participate in the follow-up of chronic patients, collaborate in the launching of health promotion or prevention programmes, or arrange appointments related to vaccination campaigns such as flu.

Integration

In integration, four sub-themes were identified: collaborative networks, teamwork, coordination with Public Health and socio-health, and other partnerships.

“Organisational barriers between hospital and Primary Care have been broken down. Flexibility is required, avoiding compartmentalisation, working transversally.” Clinician.

Collaborative networks avoid compartmentalisation and fragmentation of care and to improve system efficiency and continuity of care. It differs from the traditional hierarchical organisational model based on structures. The centralisation of different services, the use of technology and the sophistication of information systems allow a high level of automation and coordination of different activities, favouring agility and accessibility. Thus, for example, the integration of Primary Care and hospitals into Integrated Health Organisations in the Basque Country allows healthcare professionals from different care areas to work together and tackle cross-cutting problems. Another example would be the centralisation of the Osakidetza laboratories, that have functioned as a single operational unit, distributed in different locations. A third one has been the centralised system for purchasing, storing, and distributing material.

“The professionals have been very flexible; the collaboration model has been exceptional. They have shown great adaptability (e.g. primary care professionals went to hospitals).” Manager of Integrated Healthcare Organization - Osakidetza.

Teamwork is the collaborative undertaking of tasks by healthcare workers. The ability to work in a team can increase performance and quality of work, increase commitment and boost effort. It is closely linked to professional responsibility and vocational commitment. For example, the experiences of Osakidetza in terms of virtual group activities at management level or clinical sessions between professionals have been clearly positive. The models can be mixed (face-to-face and distance) and can be supported by tools that facilitate interaction. Teamwork fosters communication and nourishes relationships. Thus, for example, thanks to the bonds formed in the work teams, everyday conversations can easily become informal therapeutic sessions. They reach further, where formal corporate emotional support programmes guided by mental healthcare professionals do not reach, providing a space for venting and listening to cope with stressful, and sometimes exhausting, work.

“Coordination between public health and the care system needs to improve. The shortcomings that existed have become evident. Public health and primary care need to be strengthened.” Director of the Basque Department of Health.

Coordination with Public Health and social and health care involves using unified, clear, and updated guidelines and criteria for action to promote community-level interventions that respond to complex, mixed, and plural situations. It requires policies, tools, specific procedures, and open and agile communication channels. Thus, for example, coordination between those responsible for Public Health and healthcare providers (especially Primary Care) should be oriented towards gathering information and responding to collective social needs or demands, and creating and maintaining local teams (public health, town councils, educational centres, patient associations, neighbourhood associations, volunteers, etc.). Stable and effective links must also be established between Primary Care and nursing homes, such as, the drawing up of contingency plans in all the Integrated Healthcare Organisations in the Basque Country defining how to provide support to nursing homes, the creation of reference person in nursing homes or the creation of a Directorate for Social and Healthcare Care in the Department of Health.

“Teams that had never worked together before did so very well. Even with external partners (socio-health centres, prevention services, regional police, municipal police, Institute for Health and Safety at Work…). There was good collaboration, good attitude, willingness. Centrism, origins and interests were forgotten.” Clinician.

The creation of stable partnerships between administrations with different responsibilities (such as public security, social services, or occupational health) maximises the response capacity and the potential of each of the available assets to face common challenges. An example of this is the joint work carried out by the Basque Government Department of Health and Osakidetza with other departments and institutions (police, town councils, occupational health, etc.).

Knowledge management

Three sub-themes have been identified in knowledge management: intellectual capital, scientific evidence, and training.

“The learning and knowledge generated must be integrated into the organisation, standardised and the necessary training articulated.” Manager of the Central Services of Basque Public Health Service - Osakidetza.

The intellectual capital of the healthcare system is the knowledge (and its value) of professionals including best practices, lessons learned and research-innovation projects. The intellectual growth of an organisation requires optimising its use, knowing, collecting, accessing, and sharing this knowledge. Mechanisms, tools, and procedures must be in place for it to be structured, standardised, and embedded in the organisation. They can be of a varied nature, ranging from questionnaires for collecting information to the well-known think tanks that encourage intellectual reflection by providing spaces for dialogue and debate. In Osakidetza, there are experiences of identifying good practices and initiatives promoted by professionals (bottom-up approach).

“Managing uncertainty: there was a lot of information (info-toxification), a lot of protocols, guidelines etc. We had to try not to lose technical rigour.” Manager of Integrated Healthcare Organization - Osakidetza.

Scientific evidence is paramount if appropriate decisions are to be made. The ability, when accessing and analysing large volumes of data, to discern relevant, truthful, and up-to-date information, is essential to ensure scientific-technical rigour. Info-toxification and the generation of fake news are phenomena that must be tackled. To this end, it is essential to develop mechanisms that allow information based on scientific evidence to be filtered, structured, and shared in an agile manner. It is critical to establish solid channels of communication with experts in different scientific fields. For example, the implementation of an application for Osakidetza professionals through which a group of experts from different fields provided support in resolving scientific doubts has been valued. Clinical sessions with professionals from different hospitals and different medical specialties, have allowed knowledge-sharing, leading to better patient management and faster decision-making.

Scientific discoveries and clinical practice experience appear in reference journals, scientific society’s media, or professional fora. In a rapidly changing context, organisational mechanisms for transmission are slower than informal circuits. The challenge is to maintain ownership and scientific precision, but to operate with the speed demanded by the situations. One example is the Agile methodologies that help adapting to the conditions of the context, achieving flexibility and immediacy in the response, increasing the quality of the result, the satisfaction of the end user, the motivation of professionals and multidisciplinary collaborative work.

“Adapt training to the needs of the organisation.” Clinician.

Training enables experience and knowledge to remain in the organisation. The continuous development of its professional allows the intellectual capital growth. The healthcare system’s training offer must meet the needs of the moment. Predesigned existing continuous education plan has to be adapted to the changing demands and to a more dynamic, personalised format. Versatility increases the ability of professionals to adapt and respond more effectively to different challenges. Transversality is an aptitude in which each professional should be trained, so they have the capacity to extend their functions and reinvent themselves according to needs. Training sessions should be flexible, including both comprehensive programs and short, face-to-face, or virtual (online and offline) training “pills”. Continuous education of professionals cannot be separated from their practice. Professionals must have time in their working day schedule to be trained.

Professional roles

At the level of professional roles, two sub-themes were identified: strengthening, and innovation.

“ Empowerment of the role of nurses, they can carry out activities assigned to doctors .” Nurse.

Strengthening certain professional profiles is key to be able to respond to changing and specific demands and become sustainable organisations. It is urgent to give more content and functions to certain groups to maximise and optimise their specific competencies. To this end, it is necessary to analyse what activities each of the professional profiles perform, to assess whether there is another professional category that could perform these tasks more efficiently, and to adapt the service portfolios accordingly. To be able to cover new functions, it is essential to dimension the staff, as well as to train them in the necessary skills and knowledge. For example, nurses can expand their services portfolio and carry out activities traditionally assigned to physicians. They must have a strong and specialised training in clinical and community health. Thus, for example, the accreditation of the speciality of Family and Community Nursing in Spain has been a milestone on the road to strengthening the role of nursing. Another group whose functions could be enriched are ancillary staff, taking care of certain administrative tasks that are currently carried out by doctors.

“ Innovative work teams: customer service area with nursing students to answer questions from the public, 24 h, highly rated .” Manager of Integrated Healthcare Organization - Osakidetza.

Innovation in the creation, incorporation and utilization of new roles facilitates the entry of new skills into the organisation. It is a matter of integrating new knowledge, expertise, or experience of added value for the organisation. It is an opportunity for growth and allowing the workload of other professionals to be reduced. For example, in the Basque Country there is an under-endowment of professionals such as doctors specialised in preventive medicine, epidemiologists and mathematicians in the healthcare services or healthcare professionals in nursing homes. It would be interesting to innovate to overcome the rigidity of the administration, for example allowing partial dedication of senior healthcare professionals so that they remain active for more years. Experiences such as the User Service Centre made up of nursing students or the incorporation of doctors who are not yet trained as specialists have been very well received.

Digitisation

This study has identified four sub-themes in digitisation: strategy, data analytics, automation, and interoperability.

“Strategy for digitisation means an allocated budget, and agility in decision making. The digitisation strategy must come from within the organisation.” Manager of Integrated Healthcare Organization - Osakidetza.

The digitisation of the healthcare system is a complex process that requires a strategy supported by a solid governance structure with the capacity to define objectives and priorities, establish specific actions and allocate resources and funding. The digitisation strategy must be conceived and orchestrated by corporate management, as well as being contrasted, supported, and executed by digitisation areas or services located in the different organisations of the system. It is essential to analyse and reflect on the digital solutions designed and launched, to evaluate what has happened and what the final service and its integration into the information systems and healthcare practice should be like. For example, contrast groups consisting of experts in specific subjects could perform the validation of these technological solutions (including corporate apps), in addition to studying the sustainability model and dissemination and sales strategies, both in the organisation and in society.

“There has been coordination with the Ministry of Security. There were no serious issues, control of scams, fishing. When working from home, there is a higher probability of hackers entering. Model to be maintained and more orderly.” Director of the Basque Department of Health.

Cybersecurity is a substantial pillar in the digitisation process. The establishment of standards, protocols and rules designed to minimise possible risks to the infrastructure and/or the information itself is crucial. Thus, in the Basque Country, consolidating a model of collaboration with the Basque Cybersecurity Centre would be highly recommendable.

“Data management for prediction and knowledge generation is key.” Manager of the Central Services of Basque Public Health Service - Osakidetza.

Data analytics capability is critical if the huge volume of data being generated and stored in the healthcare system is to be exploited. Empowerment in the data science field is inevitable if one wants to maximise the performance of the data generated and thus increase knowledge. For example, the evolution and strengthening of Osakidetza’s analytical platform, Osakidetza Business Intelligence , would be crucial, to streamline decision-making and ultimately provide higher quality care in a more efficient manner.

“There are many non-value adding activities where technology is useful. Automate bureaucracy” Clinician.

Process automation is one of the areas in which technology can be extremely useful. The use of technology allows the healthcare system to move towards the provision of valuable care, understanding value from different perspectives: accessibility, equity and speed for patients and citizens; evidence and quality for professionals; and efficiency and safety for the organisation. The automation of tasks relieves the workload of different professional profiles in the healthcare system, which can devote their efforts to activities of greater value. There are activities that can undoubtedly be automated, such as the bureaucratic and administrative procedures that healthcare professionals perform, triage if certain symptoms appear, and the duration of consultations according to the symptomatology. Thus, for example, the Interactive Voice Response (IVR) tool, mostly used in the e-Health centre (health counselling), could be an effective mechanism to speed up certain tasks such as scheduling appointments in screening and vaccination programmes. Similarly, tools based on artificial intelligence, such as the chatbot located on the Osakidetza extranet, which contains a set of questions and answers for citizens, would be very valid.

“Socio-health record: needs a structural backbone boost, but is not having much effect.” Director of the Basque Department of Health.

Interoperability of systems is a key field on the way to digitisation. The sharing of information between the systems of the health care provider and the social sector is a pending and urgently needed task. In the Basque Country, timid progress has been made in the development of the socio-health record, and its immediate promotion is a must. Similarly, there are some experiences in which non-public hospitals have accessed Osakidetza’s electronic medical records, allowing access to data on patients whose care has been shared.

Organisational communication

Within the framework of organisational communication, three sub-themes were identified: management, content, and channels.

“There has been no corporate communication strategy, and it has been missed. Staff need to be given information that is not on TV. Something corporate.” Clinician.

The management of communication in the healthcare system includes two distinct audiences as recipients of information: healthcare professionals and the public. From a corporate perspective, fluid and effective communication is required between the health authorities, managers, and healthcare providers, but also with the society, which involves patients,and their families.

“Truthful, transparent information at the right time is needed.” Clinician.

The content provided by communication systems must be truthful, transparent, current, and reliable. The aim is to avoid duplicated, misperceived and inopportune information. The existence and implementation of an effective corporate communication strategy is a differentiating element, and it must be coordinated and structured so that its reception by professionals is positive. To provide information that truly reflects reality and is not anecdotal, communication systems must be robust, stable, and reliable, capable of analysing information in real time to guide decision-making.

“Better channels are needed for smooth communication.” Manager of the Central Services of Basque Public Health Service - Osakidetza.

The communication channels from the health system to the public must be effective and the messages must reach them directly, correctly defined and without contradictions. The channels used (website, social networks) and the messages must be adapted to their target audience, with an informative strategy aimed at specific groups becoming an alternative to be considered.

The technologies offered by the health system to facilitate the provision of care do not always achieve the expected degree of penetration. The deployment of an effective marketing strategy to make citizens aware of the options offered by the health system is a vital tool. For example, in Osakidetza it is perceived that the campaigns to disseminate the Personal Health Folder, corporate applications, e-Health Centre, etc. should be renewed and re-launched.

Health systems in most countries worldwide have had to cope with the crisis generated by the COVID-19 pandemic for several months. This situation has challenged health services and questioned existing health policies, highlighting several areas where there is room for improvement. Lessons learned during the COVID-19 pandemic can be used not only to respond to potential new pandemic challenges but also to improve quality, efficiency, and sustainability of health systems. Using a realist research design to identify the most relevant concepts behind the adaptation to the COVID-19 pandemic challenges can be an appropriate approach. The Framework Method allows in-depth analyses of key themes that can take place across the entire dataset, while the views of each research participant remain connected to other aspects of their narrative. They are persons whose formal roles expose them to the information, knowledge and expertise sought and have absorbed the information in a meaningful way [ 24 , 30 ].

This study has identified dimensions (themes and sub hemes) on which health systems should focus to move forward in their transformation to become high-performing organisations and provide excellent quality care for patients. It is based on the experience of health care managers and professionals in the Basque healthcare service in Spain.

Health systems must have the capacity to act proactively, quickly, and nimbly in the face of different challenges, being able to reconfigure organisational models according to changing needs. Resilient health systems [ 31 ] have an up-to-date map of human, physical and information assets, which in turn is the basis for optimal management and care planning. Self-regulation and adaptability are key characteristics of such health systems, being able to effectively mobilise the necessary resources at any given moment [ 32 , 33 ]. According to several studies, this requires that staffing requirements are anticipated well in advance and systematically considering the needs of populations over time [ 34 , 35 ], that there is clear legislation that determines the roles and responsibilities of each actor involved [ 36 ] and a strong and flexible leadership that fosters communication, coordination and alliances between actors [ 37 , 38 ].

The organisational elasticity of health systems must be reflected in different levels that allow them to adapt to dynamic situations. The possibility of having professionals who can work in different services in an orderly and organised manner is essential. One tool to address capacity shortages and increase operational flexibility is to redeploy staff between units where they are qualified to work, which requires a prior training process. For this, it is imperative that the types of services that can most benefit from such an approach,are identified [ 39 ]. Staffing plans that use flexible deployments with a sufficiently high number of staff are able to cope with peaks in demand and are cost-effective, as additional staff can contribute to units that require it [ 40 ].

The adaptability, convertibility, and scalability of structures in healthcare organisations are also relevant factors favouring organisational elasticity. Flexibility in architectural design must correspond to the complexity and specific transformation timescales of medicine, technology, and spatial organisation of healthcare facilities, as well as to the variability of standards and procedures. The design of space and the organisation of the functioning of the environment can significantly contribute, among other things, reducing the stress experienced by patients, improving the medical outcomes of therapeutic processes, increasing the efficiency of patient care, reducing staff fatigue and stress, and minimising the cost of medical care [ 41 , 42 ]. Similarly, flexibility in the provision of care, particularly in terms of the working hours of professionals, is a key feature. In fact, studies have shown that the self-scheduling of flexible working hours of healthcare professionals under the supervision of management profiles is beneficial, both from the perspective of professionals’ work-life balance and the quality of care provided to patients [ 43 , 44 ]. Flexible work organisation, among other issues such as promoting teamwork or reducing administrative burden, has been shown to contribute to greater well-being among professionals, resulting in the provision of higher quality care [ 45 ].

Enabling the flow of patients between organisations, both from an organisational and regulatory perspective, allows for higher quality, reliability, safety, and efficiency of care when patient load increases significantly. To this end, as several studies have shown, it is necessary to design a system-wide strategy that establishes and enables referral mechanisms that can be activated when necessary [ 46 , 47 , 48 ].

Telecare can help reorienting the system towards patient-centred care, complementing current patterns of care, reducing overall primary care visits and moderating the associated cost in the long term [ 49 , 50 , 51 ]. Benefits also include reduced waiting lists and improved access to care (especially for patients with reduced mobility, those living in nursing homes or in remote geographic areas) [ 52 ]. Including telecare into the current care model can contribute to a better use of resources, designing optimal workflows and allowing earlier interventions in the hope of avoiding later clinical events [ 53 ]. Establishing which modality of care is appropriate at which time, for which patient group or which has clinical and economic implications, is of key importance [ 54 ].

Telecare must ensure that the provision of humanised care is not compromised, understood from the perspective of giving equal importance to the social, emotional and psychological needs, as well as the physical needs of patients [ 55 ]. Furthermore, as several authors underline, it is imperative that cultural aspects such as privacy and data protection are considered, as these may be the reasons why some patients reject telecare [ 56 ].

During the pandemic, telework has allowed the relocation of health professionals, being a valid option for certain profiles. Some authors point out that telework has been welcomed by professionals and can be used for activities such as triage, clinical counselling, management and coordination or patient education [ 57 ]. Health services can embrace telework provided that cultural issues such as inertia and the innate conservatism of face-to-face working, technological limitations or legal restrictions, are addressed [ 58 ].

Telecoordination, which pivots on call centres, is key to providing a rapid and effective response to citizens’ demands. There are experiences of centres where nursing professionals reduce workload of clinical professionals, improve access to primary care, provide greater agility solving health problems, reduce patient travel, and optimize use of emergency services [ 59 ]. User perception and satisfaction with call centre performance is positive, mainly due to timely access to quality healthcare [ 60 ]. It is crucial that call centre professionals are qualified to undertake the corresponding tasks [ 61 ].

The relevance of establishing collaborative networks between health care providers with the aim of providing integrated care is widely recognised. Integration of care has a positive impact at different levels [ 62 ]. Beyond horizontal integration [ 63 ] or vertical integration [ 64 ], true integrated organisations have a unity of control and direction that allows them to concentrate all the efforts of their sub-units on the same objectives and strategies. There is a single mission statement, unified ownership, a single hierarchy of authority and a single end result [ 63 , 65 ].

Teamwork has been linked to face-to-face work. However, there are new experiences that point out to tools such as videoconferencing [ 66 , 67 ] or virtual worlds [ 68 ] as effective and useful channels to foster interaction and collaboration between health agents.

The crisis generated by the pandemic provides an opportunity to regenerate the teams formed by healthcare professionals, and thus reduce the number of team failures [ 69 ] and the rate of burnout [ 70 , 71 ]. It is imperative that leaders and managers focus on the team, not just individuals, define and mark the moment of transition, imbuing it with meaning and purpose, and stimulate reflection to enable action [ 72 ].

This study has shown the need for strong coordination between health services and public health agencies. Achieving substantial and lasting improvements in population health requires a concentrated effort by different entities, aligned with a common goal. The integration of Primary Care and Public Health could enhance the ability of both sectors to perform their respective missions and link with other stakeholders to catalyse a collaborative, cross-sectoral movement towards improving population health [ 73 ]. They should be seen as “two interacting and mutually supportive components” of a health system designed to improve the health of populations [ 74 , 75 , 76 , 77 ]. Similarly, coordination between health and social sector professionals is essential. It requires clarifying roles, negotiating responsibilities and establishing shared accountability, through the development of joint care plans and reflection on the actions expected [ 78 ].

As described above, proper knowledge management (process of identifying, organising, storing, and disseminating information within an organisation) in healthcare organisations is essential if they are to create, enrich, share, and sustain their intellectual capital. Knowledge mobilisation seeks to strengthen the connections between research, policy and practice, seeking to harness the benefits of research for organisational and societal improvement [ 79 ]. It requires encouraging the development of existing capacity; promote the philosophy of “learning by doing”; develop generic capabilities to adapt to change, absorb new knowledge; and facilitate mechanisms that enable the transition between individual, group and organisational learning [ 80 ].

Having scientific evidence to drive innovation and improvements in care practice is critical [ 81 ]. There are significant differences in the systematic use of evidence between current healthcare organisations [ 82 ]. Five approaches facilitate a healthcare system to become a learning system: (i) generation of evidence through research; (ii) search for evidence in the literature through dedicated specific staff; (iii) adoption of evidence generated by other organisations; (iv) incorporating clinical decision support systems into practice; and (v) evidence management to procure supplies or equipment provide greater value than others [ 83 ]. The pace at which healthcare organisations implement these mechanisms will depend largely on whether there is a perceived return, the availability of resources, and external pressure to be accountable for cost management and quality of care [ 84 ].

There is no high-quality healthcare system without highly qualified, committed, and motivated professionals. Training of professionals is a priority. The challenge to achieve high competence is having up-to-date education with post-training supervision. Professional management has to support and enforce excellent practice [ 85 ]. In addition, clinical education has to instil critical thinking, problem-solving and collaborative relationship skills, promoting adaptability to the context [ 86 ].

Regarding professional roles, there is a need to reinforce some professional profiles that can take on new responsibilities. Each actor contributes to the efficiency of health systems and to the higher quality of care provided. Primary Care nurses need a greater role so that they can add to their portfolio, activities related to the management and coordination of care for chronic patients. They can use protocols (e.g. adjusting medication for blood pressure or diabetes) and health promotion, as well as providing education and preparation for patients to improve their capacity for self-management and adherence to treatment [ 87 , 88 , 89 , 90 ]. To this end, it is important to remove existing regulatory barriers, review nursing degree programmes, adjust funding policies according to skills and create sufficient job positions [ 91 ]. New profiles with knowledge and experience are of added value for healthcare organisations. Professionals with expertise in mathematics or engineering can contribute significantly to various areas related to healthcare [ 92 ].

Reference has been made to the relevance of using digital technologies and advanced computer science to strengthen health systems. The design and deployment of a corporate digitalisation strategy is essential [ 93 , 94 ]. The following pillars stand out as fundamental: strong political commitment and government leadership; a clear regulatory framework that supports secure and effective data exchange; infrastructure provision to enable the deployment of digital solutions; financial investment to drive digitisation; training in the use of innovative digital solutions; research that provides evidence on the impact and cost-effectiveness of digital health interventions; and monitoring and evaluation of the solutions deployed.

Health services are exposed to various cybersecurity threats. It is crucial that healthcare systems prevent cyber-attacks, having well-defined software update procedures, using a virtual local area network, using de-authentication, having a data breach plan, using cloud-based computing, and training employees to be more cybersecurity aware [ 95 , 96 ].

Healthcare systems generate enormous volume of data. Artificial intelligence facilitates, improves, and extends the capacity of data analytics. It can extract the greatest value from the data to support decision making, improve the quality, safety, efficiency of care and patient experience and health outcomes. Some uses are areas where machines can outperformed humans (cancer screening or diabetic retinopathy monitoring), tasks where errors do not have serious consequences (flagging an at-risk population for vaccination), or situations where medical professionals are not available but a machine can do a good job (using a chatbot to show a patient how to give an insulin injection) [ 97 , 98 ]. Machine learning, natural language processing, voice technologies and intelligent assistants can transform electronic medical records from systems of records to systems of intelligence [ 99 , 100 ]. If the potential of health data is to be maximised, data sources must be mandatorily interoperable, a prerequisite for most innovations envisaged in future medicine [ 101 ].

Effective organisational communication requires a reciprocal process of individuals sending and receiving accurate information that shapes and reshapes people’s attitudes, behaviours, and cognitions [ 102 ]. This work has underlined the relevance of the content being communicated being truthful, transparent, current, and authoritative, and reaching the intended target populations. Oher authors point out the relevance of establishing mechanisms to overcome cognitive barriers (where the exchange of information is interrupted, contains insufficient information, or lacks context) or linguistic barriers (where the structure and form of the components) [ 103 ], as well as establishing procedures to avoid misinformation mainly disseminated on social networks [ 104 , 105 ].

To counter current and future challenges, the transformation of health systems into organisations that can improve the health of their populations and providing high quality care is crucial. Such a transformation requires multidimensional and comprehensive reform, encompassing both strategic and operational actions in diverse areas and a broad and sustained political, technical, and financial commitment. This study provides evidence on the levers on which health systems and policy makers need to focus, and which policy makers need to ground in specific actions tailored to the particularities of their contexts.

Themes and sub-themes. Seven themes and 24 sub-themes (in brackets) are: responsiveness (planning, governance, organisational elasticity and staff flexibility), telehealth (telecare, telework and telecoordination), integration (teamwork, collaborative networks, coordination with Public Health and partnerships), knowledge management (intellectual capital, scientific evidence, transmission and training), professional roles (strengthening and innovation), digitisation (strategy, data analytics, automation and interoperability) and organisational communication (management, content and channels). Next to each sub-theme, the code number appears in brackets

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

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Fullaondo, A., Erreguerena, I. & Keenoy, E.d.M. Transforming health care systems towards high-performance organizations: qualitative study based on learning from COVID-19 pandemic in the Basque Country (Spain). BMC Health Serv Res 24 , 364 (2024). https://doi.org/10.1186/s12913-024-10810-w

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Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis

Authors of this article:

Original Paper

• William J A Wright 1 , MB, BChir, MA   ; 
• Charlotte Howdle 1   ; 
• Neil S Coulson 2 , PhD   ; 
• Anna De Simoni 1, 3 , PhD  

1 School of Clinical Medicine, University of Cambridge, Cambridge, United Kingdom

2 Medical School, Nottingham City Hospital, University of Nottingham, Nottingham, United Kingdom

3 Centre for Primary Care, Wolfson Institute of Population Health, Queen Mary University of London, London, United Kingdom

Corresponding Author:

Anna De Simoni, PhD

Centre for Primary Care

Wolfson Institute of Population Health

Queen Mary University of London

58 Turner Street

London, E1 2AB

United Kingdom

Phone: 44 882 2520

Fax:44 882 2520

Email: [email protected]

Background: Pediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area.

Objective: This study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families.

Methods: This was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ≤18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged.

Results: A total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ≤18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ≤18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors.

Conclusions: We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities.

Introduction

More than 400 children are diagnosed with stroke in the United Kingdom each year [ 1 ]. Despite this sizeable number, diagnosis is often a shock to parents because there is little awareness that strokes can affect children [ 2 ]. Recovery from pediatric stroke is a long process, with impairments lasting decades after the event [ 3 ]. Novel deficits may present many years after the stroke itself, and existing issues evolve and become more numerous as the survivor grows, with as many as three-quarters of families experiencing at least 1 unmet need after stroke [ 4 ]. Pediatric stroke is underresearched [ 5 ], and as a result, little is known and available to survivors and their families to support them during recovery [ 2 , 4 , 6 , 7 ]. Finally, during the recovery process, survivors and their families feel lonely and isolated from other members of their family, previous friends, peers, and other survivors [ 3 ]. Peer support groups may be well placed to alleviate these barriers by providing a space where users can share information, advice, and support each other.

A survey of internet access in the United Kingdom conducted in 2020 revealed that the internet is available in the homes of 93% of the population [ 8 ]. This provides an opportunity for individuals to connect online and has led to the formation of online peer-support groups for health care conditions. The advantages of having peer support on an online platform have been outlined by a number of studies [ 9 - 12 ]. These include transcending geographic or temporal boundaries to communication, allowing users to interact regardless of where they live and their time commitments. In addition, posts are written anonymously and asynchronously, allowing participants to speak frankly about their experience without fear of being recognized and, furthermore, spend time composing their posts rather than rushing into a response.

A systematic review found that the roles of online peer support groups for long term conditions consist of a shared social identity, learning from the experiences of others, fostering personal growth, and supporting others [ 13 ]. Emerging quantitative data shows that online social support groups may have a therapeutic benefit for some users [ 14 ], and a systematic review of social networking site interventions for health care conditions found that they had a positive effect on health-related behaviors [ 15 ]. A quantitative study on the use of an online peer support group for women with breast cancer found that the group membership had a moderate effect on reducing depression scores, perceived stress, and cancer-related trauma [ 16 ].

The role of in-person peer support groups for adult stroke survivors has been evaluated. A systematic review found they offered a platform for shared experience, social comparison, vicarious learning, and mutual gain [ 17 ]. Qualitative reviews additionally found that peer support groups for adult stroke were a place where people shared knowledge [ 18 ], felt they belonged [ 18 , 19 ], found a purpose in mentoring each other [ 18 , 19 ], and formed and maintained friendships outside the group setting [ 18 , 19 ]. A study looking at the uses of an online forums for stroke survivors found that users shared a story, requested information and/or support, and provided information and/or support [ 20 ]. Adult stroke survivors and their families received information and support on an individual basis from an online forum with 95% of user intentions being met [ 20 ].

There is a growing literature evaluating the types of peer support offered in a variety of patient groups with chronic conditions using the Social Support Behavior Code (SSBC) framework and the adapted SSBC [ 10 , 21 , 22 ]. The SSBC measures 5 types of social support: informational support, emotional support, esteem support (expressing respect and confidence in others), network support (sharing a feeling of belonging to the group), and tangible assistance (providing or offering help). Studies using the SSBC to look at the types of support offered on online forums found the same broad pattern. Emotional and informational support were most commonly exchanged. Esteem and network support were less common, and tangible assistance was rare [ 9 , 10 , 22 - 24 ]. Online health communities allow larger degree of personal disclosure, possibly due to anonymity when posting [ 10 ].

Exploring the support given by peers in an online stroke community could provide insight about unmet needs with regard to rehabilitation services. Indeed, the “Stroke in Childhood Clinical Guidelines,” published in May 2017, requested research that aimed to identify “rehabilitation interventions in line with the emerging evidence of motor, social, behavioral, and communication sequelae following stroke” [ 5 ]. This study aims to analyze whether online peer support was exchanged among survivors of pediatric stroke and what type of peer support was exchanged. A secondary aim is to examine whether time (number of years) since the pediatric stroke was related to engagement and the type of support offered.

A qualitative analysis using the adapted SSBC framework [ 10 ] on posts by a pediatric stroke population in an online community.

The analysis used posts from the 2004-2011 Talkstroke online forum, a UK-based moderated online forum hosted by the Stroke Association website. The forum was set up as part of the charity website to facilitate communication between stroke survivors and caregivers. In total, the archives included 22,173 posts, written by 2583 unique usernames. A total of 58 participants who had a pediatric stroke were identified from the characterization of individual community users, as reported in a previous study [ 20 ]. We further excluded 2 users when analysis revealed their age at stroke was 18 years or older and 4 users because their age at the time of posting was unknown. A sample of 52 users remained, who produced a total of 425 posts that were collected in an Excel (Microsoft Corporation) spreadsheet. Characteristics of stroke survivors, including demographics, employment, education, stroke type, initial impairments as well as impairments at the time of posting, support needs, and independence, were retrieved from within the posts in a previous study [ 20 ].

Data Analysis

WJAW read through all posts to become familiar with the data and patient narratives. Considering the potentially different perspectives of survivors who wrote as adults on their experience of rehabilitation from pediatric stroke and survivors who were written about by their parents, posts were split into 2 categories: whether the pediatric stroke survivor was older than 18 years or aged 18 years or younger at the time of posting. This assessed whether the time since the stroke was related to the amount and type of social support given. Rather than excluding posts that were not relevant (ie, did not include instances of social support), all posts were taken into account for the analysis to give an idea of how prevalent social support exchange was within the discussion threads. WJAW analyzed all posts, and CH and ADS independently coded a random 10% of posts. Posts were analyzed individually, not in the context of other posts in the forum thread. Deductive thematic analysis was applied, as described by Braun and Clarke [ 25 ]. The adapted SSBC ( Textbox 1 ) was used as a framework to identify the types of social support provided through engagement with the online forums [ 10 ], and results have been reported according to the 5 types of social support: informational, emotional, esteem, network support, and tangible assistance. Coding was discussed with CH and ADS until agreement was reached.

Support types and definitions

• Advice: provides ideas or suggestions for action.
• Referral: refers the recipient to other sources of information or help.
• Situational appraisal: helps reassess or redefine the situation being faced by the recipient.
• Teaching: offers detailed information, facts, or news.
• Relationship: conveys the importance of closeness.
• Physical affection: offers physical contact, such as hugs and kisses.
• Confidentiality: keeps the recipient’s problem in confidence.
• Sympathy: sorrow or regret for the situation faced by the recipient.
• Understanding or empathy: expressions of understanding of the situation or discloses similar experience in a way that conveys understanding.
• Encouragement: provides the recipient with hope and confidence.
• Prayer: offers prayer for the recipient.
• Compliment: says positive things about the recipient.
• Validation: provides agreement with the views of the recipient.
• Relief of blame: alleviates any feelings of guilt the recipient has about the situation.
• Access: provides the recipient with access to new people.
• Presence: offers to be there.
• Companions: reminds the recipient that there are others who share similar experiences and are available.
• Loan: lend money to the recipient.
• Direct task: offers to do a direct task.
• Indirect task: offers to take over a task from the recipient while they are stressed.
• Active participation: offers to join the recipient in an activity.
• Willingness: offers or expressions of willingness to help.

Patient and Public Involvement

A survivor of pediatric stroke aged 22 years (aged 0 years at the time of stroke and not a member of an online stroke community) was contacted after the initial analysis was completed and read the first draft of the results, providing insightful comments that helped to finalize the analysis and informed the discussion.

Ethical Considerations

The Stroke Association provided access to the archived forums and gave permission for the data to be used for this research purpose. The data from Talkstroke were stored and accessed through the University of Cambridge Clinical School Secure Data Hosting Service. Users of the forums had previously agreed that their data would become public upon registration within the forums, and there is consensus that internet data that are freely and publicly accessible can be used for research without needing ethics committee approval [ 20 ]. In order to protect the identity and intellectual property of forums participants, direct quotes have not been used, despite this being normal practice in qualitative research. Summative descriptions of quotes will instead be used throughout the paper. De Simoni et al [ 20 ] report a detailed description of the ethics linked to the research in the Talkstroke archives.

Participants’ Characteristics

A total of 41 survivors were aged ≤18 years at the time of participation, contributing a total of 273 posts; 11 survivors were aged >18 years and contributed 152 posts. Most survivors in the group aged ≤18 years took part in the community less than 1 year after their stroke, with the majority of content contributed indirectly through third-party users (31/35 were mothers, 89%). Content from the group aged >18 years was reported firsthand by adult survivors of pediatric stroke ( Table 1 ). The time between stroke and participation in the online community for both groups ranged from 2 weeks to 46 years. Further information about our population can be found in Howdle et al [ 3 ].

Types of Support Requested by Participants

Posts written by participants at the start of a discussion thread followed a similar structure: an introduction followed by an account of their stroke and recovery up until the time of writing. Participants would then request help or ask for general or specific advice. Within the group aged ≤18 years, nearly half of the posts involved sharing their experience of pediatric stroke.

One parent wrote that they were not sure where to start and explained that their child was born with a congenital heart defect. They described the location of (stroke) damage in the child’s brain. They explained that the progress the child has made has amazed everyone, describing the regaining of functions. The user then requested general help and advice as it was all new (p1, stroke aged 0, 0 years poststroke, mother).

Some posts in the group aged >18 years described their experience with pediatric stroke. In general, rather than sharing their whole story, they shared parts that were relevant to the topic of discussion within a thread. Their aim when participating typically seemed to be to give hope and motivation to other survivors.

A survivor aged older than 18 years wrote, first, to say they felt sorry for the original poster’s loss. They then explained their own story about how their childhood stroke was missed. Since then, they have had many tests in the hope of finding a cause; however, the cause of the stroke was still unknown. They went on to complete their General Certificate of Secondary Education and A-level examinations and were currently studying at university. They finished by writing that strokes do happen in young people and about the need for more societal awareness. They then told the survivor that they too struggled to find anyone to help support their rehabilitation, however, reassuring them they were not alone and to not hesitate to ask any questions (p43, stroke aged 13, 7 years poststroke, survivor).

Reaching out for help occurred in posts by those aged ≤18 years and >18 years. These posts tended to involve asking for advice on dealing with a specific type of symptom.

A survivor aged ≤18 years wrote that her headaches were seriously affecting her everyday life. She followed the doctor’s advice to rest, drink water, and take painkillers, but she found she was resting all the time, and it was affecting her sleep. She apologized for “moaning” and then asked for any ideas (p47, stroke aged 15, 1 year poststroke, survivor).

A user aged >18 years wrote that after 30 years, their eyes were “dizzy.” They then subsequently asked if anyone had medication or other advice to stop this (p15, stroke aged 11, 30 years poststroke).

SSBC Analysis

About half of the posts contained instances of social support. It was common for posts to contain more than one form of support, for example, a user relating their situation to the recipient’s to show understanding and then providing advice based on their experience of a similar situation.

Informational Support

All 4 subcategories of informational support were represented (advice, referral, situation appraisal, and teaching). Comparing the 2 age categories, informational support was proportionally offered more by the group aged >18 years than the group aged ≤18 years. Advice was offered on a range of topics. In the group aged ≤18 years, these included therapy types, disability allowance, travel, and not giving up and carving out time as a caregiver. Survivors aged >18 years also gave advice on therapy types and financial aid, but additionally discussed driving and how to be a good caregiver.

One user aged ≤18 years told another participant to look into claiming disability living allowance for children aged 16 years, saying it could save them 17% of the cost of alterations to their home (p6, stroke aged 0, 14 years poststroke, mother).

One user aged >18 years advised a caregiver to take their child out of their comfort zone and make them realize that there is more to life than sitting in a chair. They advised that this would motivate the survivor and be lots of fun (p52, stroke aged 17, 21 years poststroke, survivor).

In the referral subcategory, participants recommended research groups and organizations to each other for support and to aid financial claims.

One user wrote that one good organization for their child’s one-sided weakness was “Hemihelp” (p3, stroke aged 0, 11 years poststroke, mother).

Situation appraisal was common among participants in the group aged ≤18 years. This occurred to help others understand that pediatric strokes occurred more commonly than widely perceived, that the recovery process was different in children compared to adults, and to normalize the grief that parents were feeling for their “lost child.”

A user wrote not to be discouraged about hearing recovery stories of adult survivors of stroke, and that recovery for a child was different, as the plasticity of the brain is a childhood phenomenon (p12, stroke aged 1, 0 years poststroke, mother).

There were several instances of users teaching each other in both groups. Topics involved included how specific medications worked and their dosage, the meaning of medical tests, appointments, and the different types of strokes the disability support available and how to access it, and how to deal with the side effects of stroke.

One user aged >18 years advised another to start a diary to write appointments and other important things in. The user said that this piece of information was invaluable, as it would keep their mind on the stroke and not worrying about forgetting things (p52, stroke aged 17, 21 years poststroke, survivor).

A user explained what a magnetic resonance angiography scan is, saying that it is basically a magnetic resonance imaging scan, but that then they add a dye to show how well the blood is flowing through veins and arteries (p22, stroke aged 5, 4 years poststroke, mother).

Emotional Support

Emotional support was offered proportionally more by participants aged ≤18 years than >18 years. Support was offered to survivors of stroke in both age categories and to caregivers who wrote on behalf of the survivors. About 5 of the 7 subcategories were seen relationship, physical affection, confidentiality, sympathy, understanding or empathy, and encouragement.

Sympathy was the most displayed subcategory. Messages expressed sorrow for participants’ stroke events, bad news since the stroke, bad experiences, ongoing symptoms, and the struggle to find a cause.

One user wrote that she was sorry to hear about another user’s stroke (p4, stroke aged 0, 0 years poststroke, mother).

Understanding and empathy were displayed in the context of loneliness, fighting the urge to give up, acknowledging similar experiences, symptoms experienced, and difficulty finding travel insurance.

One user wrote they knew what another user meant when saying they felt alone as they had that most of their life. (p36, stroke aged 0, 35 years poststroke, survivor).

A user empathized with another user, writing that they too understood the challenges of dealing with a young child (with stroke) as a single parent (p12, stroke aged 1, 0 years poststroke, mother).

Messages of encouragement were present, often in the form of remarks like “good luck,” “chin up,” or “it gets easier over time.” Most encouragement occurred in the context of helping people start their recovery journey, inspiring people not to give up, or wishing good fortune when attending health care institutions.

A health care worker who previously had a stroke as a child shared her story in the hope it would inspire and encourage people that life does not have to end following a stroke and that with determination you can get on and find other ways of doing things. They finished by stating not to let the stroke win (p39, stroke aged 8, 23 years poststroke, survivor).

The relationship subcategory describes the closeness felt between members of the online community. Users told others they did the best thing by joining the community and expressed joy in finding people who were going through similar experiences.

One user wrote how sorry they were to hear another person’s story but that it was lovely to hear from them as it was difficult to find people in a similar situation. They wanted to be kept up to date about how the other survivors were getting on (p2, stroke aged 0, 2 years poststroke, mother).

Physical affection was displayed through affectionate language and symbols. The most common symbol used was an x to send kisses.

One user wrote that they hoped another’s child was well and that their heart truly went to their family, then signed off with their name (p11, stroke aged 1, 1 year poststroke, mother).

Another user wished someone a happy new year, followed by 3 kisses (p49, stroke aged 17, 2 years poststroke, survivor).

Network Support

Around 2 out of 3 subcategories of network support were identified within the data: presence and companions. The most common incidences of presence, a member offering to be there for another member, were related to 2 users finding themselves in a similar position. This prompted them to stay in touch, especially when somebody was offering advice, to see if it worked. Adult survivors of childhood stroke also offered to keep in touch with younger participants in the long term, to keep answering questions related to their recovery.

A survivor aged >18 years wrote that a user could contact them with any questions and they would do their best to answer them (p49, stroke aged 17, 2 years poststroke, survivor).

A mother of a survivor wrote to another to stay in touch; a few mothers had found each other, and it did help (p12, stroke aged 1, 0 years poststroke, mother).

The community offered a lot in the way of companionship. Users reminded each other that everyone on the site had been through similar experiences and were all there to support each other. Users were often complimentary about others in the community.

One user stated that if another felt down, then they could just talk to those on the site, as everyone was there for each other (p36, stroke aged 0, 35 years poststroke, survivor).

A user prompted another to keep posting because the people on the site were brilliant (p26, stroke aged 9, 0 years poststroke, mother).

Esteem Support

All subcategories of esteem support were present: compliments, validation, and relief of blame.

Compliments were exchanged to thank people for advice and recovery ideas, for sharing their stories, to motivate caregivers, and to congratulate people for joining the community.

One user wrote to another that they admired their confidence and how they wanted to thank them for always being on the site with advice and support (p26, stroke aged 9, 0 years poststroke, mother).

Another user complimented another by saying they thought the rehabilitation measures they had in place were a brilliant idea (p22, stroke aged 5, 4 years poststroke, mother).

Validation was given when survivors had been through similar experiences. Notable themes within validation were missed or delayed diagnoses, poor awareness of pediatric stroke, isolation, feeling tired, and wanting live chatrooms.

One user agreed with another about the difficulty of convincing doctors to do investigations for stroke. They said their child had all the signs of stroke, but they only obtained a computed tomography scan by pushing the consultant hard, who then agreed to get a radiologist out of bed (p12, stroke aged 1, 0 years poststroke, mother).

Another user agreed that previous friends found it difficult to comprehend how difficult recovery was for stroke survivors (p28, stroke aged 9, 2 years poststroke, parents).

There was a single account of relief of blame, reassuring a survivor that they were not a burden and that everyone needs support at some point (p12, stroke aged 1, 0 years poststroke, mother).

Tangible Aid

Tangible aid was the least common type of social support offered. Loans, direct tasks, indirect tasks, and active participation were not identified within the data set. However, members displayed a willingness to help wherever possible.

One user wrote that they would be more than happy to help if required (p49, 17 years, 4 years poststroke, survivor).

The analysis was read by a survivor of multiple childhood strokes while aged <1 year, who is now studying at university. She commented that she and her family had never had any experience with peer support, whether in person or online; support had only been provided by medical professionals. However, she thought peer support would have been useful for her and her family. She especially valued the teaching and situational appraisal subcategories in informational support, emotional support, and the validation subcategory in esteem support. Some extracts of her comments are reported in Textbox 2 .

Regarding situational appraisal, the survivor said:

• “I know my family were told this a lot while we were waiting to see if my stroke at <0 years would affect me in my first decade. It was emphasised to be aware of the difference between childhood and adult stroke and not to compare the speed of recovery.”

Regarding teaching, the survivor said:

• “I am sure this support would have been invaluable to my family if these forums existed when I was born. Instead informational support was given by doctors only.”

Regarding emotional, the survivor said:

• “Again I’m sure this emotional support would have been of great help especially in the uncertain times following a stroke, especially since my family were unaware and unable to connect with any of other families who had experienced pediatric stroke. Additionally, emotional support would have been a great help during the early years when there was uncertainty about the future implications of the stroke as it’s apparently hard to judge the extent of the effects, they wait to see if the child walks, talks or can communicate and learn at school.”

Validation with regards to medical professionals being less experienced with diagnosing pediatric strokes:

• “I’m sure my family can sympathise with this, it took one very persistent doctor/nurse who was adamant I was having a stroke to investigate further.”

This study provides qualitative evidence that online peer support, facilitated by the online community, played an important role in meeting the rehabilitation needs of patients with pediatric stroke. Most posts analyzed displayed social support. Discussion threads engaged a range of people: those who were recently recovering from a pediatric stroke, their caregivers and families, and adult survivors of pediatric stroke. Users appreciated finding others they could share their lived experience of stroke with and relate to similar incidences, particularly regarding the difficulty in getting a diagnosis and rehabilitation. They additionally discussed both the lack of specific local support and available resources and support services. All 5 categories of social support in the SSBC were evidenced; emotional support was the most common, followed by informational support. The group aged ≤18 years provided more emotional support than informational support; however, the group aged >18 years provided more informational support than emotional support. This difference may arise as members of the group aged >18 years engage with the community in order to provide informational support based on their own lived experience of decades of rehabilitation. There were instances of network support and esteem support, and tangible support was exchanged the least. There were no instances of subcategory access support. It was noticeable that survivors in the group aged >18 years displayed empathy less often than survivors in the group aged ≤18 years.

There are 3 strengths to this study. First, the online community facilitated communication and discussion between participants who recently had a stroke and users who had a stroke many years before. This brought unprecedented insight into the long-term lived experiences of pediatric stroke recovery and survivors’ unmet needs. Second, the methodological design of analyzing posts on a forums meant that messages were viewed and assessed directly by the researcher. This is a nontraditional method that helps to avoid potential problems such as retrospective self-reports, recall bias, and researchers’ bias. Third, the population that uses the forums might include people who do not partake in traditional research studies, allowing the needs of an underrepresented patient population to be studied [ 11 ].

Limitations of the study include the analysis of a single UK-based online peer-support community dated 2004-2011, decreasing the generalizability of the study. Additionally, although messages imply that users appreciated support from others, the impact of the support given was hard to measure; performing interviews with participants would have been more successful in measuring the effect of comments on users. Moreover, the study population may not be representative of survivors who do not have access to a computer, do not know how to use the online forums, and therefore may not be able to participate in the online community, resulting in a potential patient population being missed from this study [ 16 ]. Further to this, participants who were adult survivors needed to be able to read and type, abilities sometimes affected by stroke and potentially acting as barriers to participation. This study was not set to explore the drawbacks of using online forums as support for health conditions, as posts were analyzed individually and not in the context of the thread to which they belonged. This meant we could not analyze how a post affected other users taking part in that thread. Nevertheless, a previous qualitative study of the same stroke online community found that users would promptly counter inappropriate medical information or health behavior [ 20 ].

The ability to access support is a form of social medical capital, defined as the “advantages that any user (patient or caregiver) can gain from participation in the social networks provided by online health communities” [ 26 ]. This confirms findings from similar studies across a variety of chronic conditions [ 9 , 10 , 23 ].

Only half of the posts analyzed in the study contained instances of social support. This was much lower than previous studies, which found rates between 83.8% and 98.9% [ 9 , 24 ]. This could be for a number of reasons: there is a paucity of literature for survivors of pediatric stroke to access, resulting in families and survivors having many questions during their recovery. It is possible that participants were asking more questions than they were able to answer. Also, the forum was for survivors of both adult and pediatric stroke, and it is possible that the adult stroke survivors provided support, which was not included in this study sample. Similar to other studies, informational and emotional support were the 2 most commonly exchanged categories of support; network and esteem support were the next most common, with tangible aid being the least common form of support received [ 9 , 10 , 22 - 24 ]. This may be reflective of the actual online platform as the means for providing support, where the geographical limitations of the group mean that the ability to perform tasks to help others is limited.

Informational support involved participants giving each other practical and recovery advice. In addition, participants taught each other strategies for dealing with things referred them to resources and helped them appraise situations. Emotional support was commonly offered; participants exhibited affection for each other, and the forums appeared to provide a safe space to share experiences where users could sympathize, empathize, or encourage each other. Network support was present on the forums; there were many messages that expressed a sense of comradery, reiterating that members of the site were there to support each other. This could be particularly useful in the context of pediatric stroke, where the incidence is relatively low and the chances of meeting another survivor who lives close by are low. Esteem support was provided to thank people for their contribution to the site as well as validate people’s recovery processes.

Notably, there were no examples of the access subcategory. Access is defined as providing “the recipient with access to new people.” This is contrary to other studies [ 9 , 10 , 22 , 23 ]. This may be another illustration of the low incidence of pediatric stroke, and so not many survivors and families are well known. In addition, medical and public awareness of pediatric stroke in society is low [ 2 , 3 , 7 ] and as a result, there are very few people and sources of literature available for survivors. There were no examples of confidentiality, a finding found in other similar studies on online forums; this was as expected as posts were made on a public platform [ 9 , 10 ].

A new finding from this study is that posts made by users whose child was aged ≤18 years at the time of posting offered emotional support more commonly than informational support. However, survivors who were aged >18 years at the time of posting gave more informational support than emotional support. This finding can be interpreted in the context of the theory of optimal matching [ 27 ], which hypothesizes that specific types of social support may be beneficial in aiding specific types of stress. According to this theory, the controllability of a situation plays an important role in determining what kind of social support will be most beneficial to the individual. Informational support is a type of action-facilitating support that fosters behaviors designed to mitigate a stressor. Emotional support is a nurturing support that helps individuals cope with the emotional consequences of a stressor [ 22 ]. It proposes that individuals with controllable problems should benefit most from informational support because they can use this information, advice, and guidance to help them deal with the cause of their difficulties. However, those with uncontrollable problems should benefit more from emotional support because this will help them cope with unpleasant emotions and the stressful negative effects of being in an uncontrollable situation. In the context of pediatric stroke, survivors who are closer to their stroke event may perceive to have less control over events in their life and so offer emotional support. In contrast, survivors aged >18 years may view their stroke event as more controllable and therefore may have perceived that providing informational support from decades of lived experience was more useful. In addition, socioemotional selectivity theory [ 28 ] suggests that the degree to which an illness is relatively more chronic or acute could influence the support seeker’s time perspective, whereby chronic illness facilitates problem-focused coping that favors action-facilitating types of support [ 22 ]. Pediatric stroke is an illness with both an acute and chronic phase. As predicted by the social-emotional selectivity theory, emotional support is more prevalent in the group aged ≤18 years coping with acute illness, whereas informational support is more common in the group aged >18 years.

Conclusions

This study brings qualitative evidence that a nation-wide online peer support group was beneficial in drawing support to survivors of pediatric stroke and their families. The community also represented an opportunity for adult survivors of pediatric stroke to validate their experiences many decades post stroke, share information gained through their rehabilitation journeys, provide insight about unmet needs with regard to rehabilitation services, and provide hope to families with more acute stroke incidences. The study additionally highlights that recovery from stroke is a long process, with adult survivors reaching out for advice. More research is needed, in particular interventional research studies, to evaluate the effectiveness of online peer support groups for survivors of pediatric stroke, as well as research to ensure online communities are safe and nurtured.

Acknowledgments

The authors are grateful to the Stroke Association for sharing the archive file of Talkstroke Online with us. We thank our patient and public involvement representative for her comments on the manuscript. ADS was partly funded by a National Institute for Health and Care Research (NIHR) Programme Grant for Applied Research (NIHR202037). Views are those of the authors and not necessarily those of the National Health Service, NIHR, or the Department of Health and Social Care.

Conflicts of Interest

None declared.

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Abbreviations

Edited by T Leung; submitted 29.05.23; peer-reviewed by S Atanasova, D Riggins; comments to author 19.09.23; revised version received 07.11.23; accepted 29.01.24; published 15.03.24.

©William J A Wright, Charlotte Howdle, Neil S Coulson, Anna De Simoni. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 15.03.2024.

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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.

Something felt ‘off’ – how AI messed with our human research, and what we learned

Senior Lecturer in Health Psychology, Te Herenga Waka — Victoria University of Wellington

Research Fellow, School of Health, Te Herenga Waka — Victoria University of Wellington

Disclosure statement

Alexandra Gibson receives funding from Te Apārangi - Royal Society of New Zealand.

Alex Beattie does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

Te Herenga Waka — Victoria University of Wellington provides funding as a member of The Conversation NZ.

Te Herenga Waka—Victoria University of Wellington provides funding as a member of The Conversation AU.

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All levels of research are being changed by the rise of artificial intelligence (AI). Don’t have time to read that journal article? AI-powered tools such as TLDRthis will summarise it for you.

Struggling to find relevant sources for your review? Inciteful will list suitable articles with just the click of a button. Are your human research participants too expensive or complicated to manage? Not a problem – try synthetic participants instead.

Each of these tools suggests AI could be superior to humans in outlining and explaining concepts or ideas. But can humans be replaced when it comes to qualitative research?

This is something we recently had to grapple with while carrying out unrelated research into mobile dating during the COVID-19 pandemic . And what we found should temper enthusiasm for artificial responses over the words of human participants.

Encountering AI in our research

Our research is looking at how people might navigate mobile dating during the pandemic in Aotearoa New Zealand. Our aim was to explore broader social responses to mobile dating as the pandemic progressed and as public health mandates changed over time.

As part of this ongoing research, we prompt participants to develop stories in response to hypothetical scenarios.

Read more: What happens when we outsource boring but important work to AI? Research shows we forget how to do it ourselves

In 2021 and 2022 we received a wide range of intriguing and quirky responses from 110 New Zealanders recruited through Facebook. Each participant received a gift voucher for their time.

Participants described characters navigating the challenges of “Zoom dates” and clashing over vaccination statuses or wearing masks. Others wrote passionate love stories with eyebrow-raising details. Some even broke the fourth wall and wrote directly to us, complaining about the mandatory word length of their stories or the quality of our prompts.

These responses captured the highs and lows of online dating, the boredom and loneliness of lockdown, and the thrills and despair of finding love during the time of COVID-19.

But, perhaps most of all, these responses reminded us of the idiosyncratic and irreverent aspects of human participation in research – the unexpected directions participants go in, or even the unsolicited feedback you can receive when doing research.

But in the latest round of our study in late 2023, something had clearly changed across the 60 stories we received.

This time many of the stories felt “off”. Word choices were quite stilted or overly formal. And each story was quite moralistic in terms of what one “should” do in a situation.

Using AI detection tools, such as ZeroGPT, we concluded participants – or even bots – were using AI to generate story answers for them, possibly to receive the gift voucher for minimal effort.

Contrary to claims that AI can sufficiently replicate human participants in research, we found AI-generated stories to be woeful.

We were reminded that an essential ingredient of any social research is for the data to be based on lived experience.

Is AI the problem?

Perhap the biggest threat to human research is not AI, but rather the philosophy that underscores it.

It is worth noting the majority of claims about AI’s capabilities to replace humans come from computer scientists or quantitative social scientists. In these types of studies, human reasoning or behaviour is often measured through scorecards or yes/no statements.

This approach necessarily fits human experience into a framework that can be more easily analysed through computational or artificial interpretation.

In contrast, we are qualitative researchers who are interested in the messy, emotional, lived experience of people’s perspectives on dating. We were drawn to the thrills and disappointments participants originally pointed to with online dating, the frustrations and challenges of trying to use dating apps, as well as the opportunities they might create for intimacy during a time of lockdowns and evolving health mandates.

Read more: AI is in danger of becoming too male – new research

In general, we found AI poorly simulated these experiences.

Some might accept generative AI is here to stay, or that AI should be viewed as offering various tools to researchers. Other researchers might retreat to forms of data collection, such as surveys, that might minimise the interference of unwanted AI participation.

But, based on our recent research experience , we believe theoretically-driven, qualitative social research is best equipped to detect and protect against AI interference.

There are additional implications for research. The threat of AI as an unwanted participant means researchers will have to work longer or harder to spot imposter participants.

Academic institutions need to start developing policies and practices to reduce the burden on individual researchers trying to carry out research in the changing AI environment.

Regardless of researchers’ theoretical orientation, how we work to limit the involvement of AI is a question for anyone interested in understanding human perspectives or experiences. If anything, the limitations of AI reemphasise the importance of being human in social research.

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