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StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-.

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Qualitative study.

Steven Tenny ; Janelle M. Brannan ; Grace D. Brannan .

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Last Update: September 18, 2022 .

• Introduction

Qualitative research is a type of research that explores and provides deeper insights into real-world problems. [1] Instead of collecting numerical data points or intervene or introduce treatments just like in quantitative research, qualitative research helps generate hypotheses as well as further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much. It could be structured as a stand-alone study, purely relying on qualitative data or it could be part of mixed-methods research that combines qualitative and quantitative data. This review introduces the readers to some basic concepts, definitions, terminology, and application of qualitative research.

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

However, while qualitative research is sometimes placed in opposition to quantitative research, where they are necessarily opposites and therefore ‘compete’ against each other and the philosophical paradigms associated with each, qualitative and quantitative work are not necessarily opposites nor are they incompatible. [4] While qualitative and quantitative approaches are different, they are not necessarily opposites, and they are certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined that there is a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated together.

Examples of Qualitative Research Approaches

Ethnography

Ethnography as a research design has its origins in social and cultural anthropology, and involves the researcher being directly immersed in the participant’s environment. [2] Through this immersion, the ethnographer can use a variety of data collection techniques with the aim of being able to produce a comprehensive account of the social phenomena that occurred during the research period. [2] That is to say, the researcher’s aim with ethnography is to immerse themselves into the research population and come out of it with accounts of actions, behaviors, events, etc. through the eyes of someone involved in the population. Direct involvement of the researcher with the target population is one benefit of ethnographic research because it can then be possible to find data that is otherwise very difficult to extract and record.

Grounded Theory

Grounded Theory is the “generation of a theoretical model through the experience of observing a study population and developing a comparative analysis of their speech and behavior.” [5] As opposed to quantitative research which is deductive and tests or verifies an existing theory, grounded theory research is inductive and therefore lends itself to research that is aiming to study social interactions or experiences. [3] [2] In essence, Grounded Theory’s goal is to explain for example how and why an event occurs or how and why people might behave a certain way. Through observing the population, a researcher using the Grounded Theory approach can then develop a theory to explain the phenomena of interest.

Phenomenology

Phenomenology is defined as the “study of the meaning of phenomena or the study of the particular”. [5] At first glance, it might seem that Grounded Theory and Phenomenology are quite similar, but upon careful examination, the differences can be seen. At its core, phenomenology looks to investigate experiences from the perspective of the individual. [2] Phenomenology is essentially looking into the ‘lived experiences’ of the participants and aims to examine how and why participants behaved a certain way, from their perspective . Herein lies one of the main differences between Grounded Theory and Phenomenology. Grounded Theory aims to develop a theory for social phenomena through an examination of various data sources whereas Phenomenology focuses on describing and explaining an event or phenomena from the perspective of those who have experienced it.

Narrative Research

One of qualitative research’s strengths lies in its ability to tell a story, often from the perspective of those directly involved in it. Reporting on qualitative research involves including details and descriptions of the setting involved and quotes from participants. This detail is called ‘thick’ or ‘rich’ description and is a strength of qualitative research. Narrative research is rife with the possibilities of ‘thick’ description as this approach weaves together a sequence of events, usually from just one or two individuals, in the hopes of creating a cohesive story, or narrative. [2] While it might seem like a waste of time to focus on such a specific, individual level, understanding one or two people’s narratives for an event or phenomenon can help to inform researchers about the influences that helped shape that narrative. The tension or conflict of differing narratives can be “opportunities for innovation”. [2]

Research Paradigm

Research paradigms are the assumptions, norms, and standards that underpin different approaches to research. Essentially, research paradigms are the ‘worldview’ that inform research. [4] It is valuable for researchers, both qualitative and quantitative, to understand what paradigm they are working within because understanding the theoretical basis of research paradigms allows researchers to understand the strengths and weaknesses of the approach being used and adjust accordingly. Different paradigms have different ontology and epistemologies . Ontology is defined as the "assumptions about the nature of reality” whereas epistemology is defined as the “assumptions about the nature of knowledge” that inform the work researchers do. [2] It is important to understand the ontological and epistemological foundations of the research paradigm researchers are working within to allow for a full understanding of the approach being used and the assumptions that underpin the approach as a whole. Further, it is crucial that researchers understand their own ontological and epistemological assumptions about the world in general because their assumptions about the world will necessarily impact how they interact with research. A discussion of the research paradigm is not complete without describing positivist, postpositivist, and constructivist philosophies.

Positivist vs Postpositivist

To further understand qualitative research, we need to discuss positivist and postpositivist frameworks. Positivism is a philosophy that the scientific method can and should be applied to social as well as natural sciences. [4] Essentially, positivist thinking insists that the social sciences should use natural science methods in its research which stems from positivist ontology that there is an objective reality that exists that is fully independent of our perception of the world as individuals. Quantitative research is rooted in positivist philosophy, which can be seen in the value it places on concepts such as causality, generalizability, and replicability.

Conversely, postpositivists argue that social reality can never be one hundred percent explained but it could be approximated. [4] Indeed, qualitative researchers have been insisting that there are “fundamental limits to the extent to which the methods and procedures of the natural sciences could be applied to the social world” and therefore postpositivist philosophy is often associated with qualitative research. [4] An example of positivist versus postpositivist values in research might be that positivist philosophies value hypothesis-testing, whereas postpositivist philosophies value the ability to formulate a substantive theory.

Constructivist

Constructivism is a subcategory of postpositivism. Most researchers invested in postpositivist research are constructivist as well, meaning they think there is no objective external reality that exists but rather that reality is constructed. Constructivism is a theoretical lens that emphasizes the dynamic nature of our world. “Constructivism contends that individuals’ views are directly influenced by their experiences, and it is these individual experiences and views that shape their perspective of reality”. [6] Essentially, Constructivist thought focuses on how ‘reality’ is not a fixed certainty and experiences, interactions, and backgrounds give people a unique view of the world. Constructivism contends, unlike in positivist views, that there is not necessarily an ‘objective’ reality we all experience. This is the ‘relativist’ ontological view that reality and the world we live in are dynamic and socially constructed. Therefore, qualitative scientific knowledge can be inductive as well as deductive.” [4]

So why is it important to understand the differences in assumptions that different philosophies and approaches to research have? Fundamentally, the assumptions underpinning the research tools a researcher selects provide an overall base for the assumptions the rest of the research will have and can even change the role of the researcher themselves. [2] For example, is the researcher an ‘objective’ observer such as in positivist quantitative work? Or is the researcher an active participant in the research itself, as in postpositivist qualitative work? Understanding the philosophical base of the research undertaken allows researchers to fully understand the implications of their work and their role within the research, as well as reflect on their own positionality and bias as it pertains to the research they are conducting.

Data Sampling 

The better the sample represents the intended study population, the more likely the researcher is to encompass the varying factors at play. The following are examples of participant sampling and selection: [7]

• Purposive sampling- selection based on the researcher’s rationale in terms of being the most informative.
• Criterion sampling-selection based on pre-identified factors.
• Convenience sampling- selection based on availability.
• Snowball sampling- the selection is by referral from other participants or people who know potential participants.
• Extreme case sampling- targeted selection of rare cases.
• Typical case sampling-selection based on regular or average participants. 

Data Collection and Analysis

Qualitative research uses several techniques including interviews, focus groups, and observation. [1] [2] [3] Interviews may be unstructured, with open-ended questions on a topic and the interviewer adapts to the responses. Structured interviews have a predetermined number of questions that every participant is asked. It is usually one on one and is appropriate for sensitive topics or topics needing an in-depth exploration. Focus groups are often held with 8-12 target participants and are used when group dynamics and collective views on a topic are desired. Researchers can be a participant-observer to share the experiences of the subject or a non-participant or detached observer.

While quantitative research design prescribes a controlled environment for data collection, qualitative data collection may be in a central location or in the environment of the participants, depending on the study goals and design. Qualitative research could amount to a large amount of data. Data is transcribed which may then be coded manually or with the use of Computer Assisted Qualitative Data Analysis Software or CAQDAS such as ATLAS.ti or NVivo. [8] [9] [10]

After the coding process, qualitative research results could be in various formats. It could be a synthesis and interpretation presented with excerpts from the data. [11] Results also could be in the form of themes and theory or model development.

Dissemination

To standardize and facilitate the dissemination of qualitative research outcomes, the healthcare team can use two reporting standards. The Consolidated Criteria for Reporting Qualitative Research or COREQ is a 32-item checklist for interviews and focus groups. [12] The Standards for Reporting Qualitative Research (SRQR) is a checklist covering a wider range of qualitative research. [13]

Examples of Application

Many times a research question will start with qualitative research. The qualitative research will help generate the research hypothesis which can be tested with quantitative methods. After the data is collected and analyzed with quantitative methods, a set of qualitative methods can be used to dive deeper into the data for a better understanding of what the numbers truly mean and their implications. The qualitative methods can then help clarify the quantitative data and also help refine the hypothesis for future research. Furthermore, with qualitative research researchers can explore subjects that are poorly studied with quantitative methods. These include opinions, individual's actions, and social science research.

A good qualitative study design starts with a goal or objective. This should be clearly defined or stated. The target population needs to be specified. A method for obtaining information from the study population must be carefully detailed to ensure there are no omissions of part of the target population. A proper collection method should be selected which will help obtain the desired information without overly limiting the collected data because many times, the information sought is not well compartmentalized or obtained. Finally, the design should ensure adequate methods for analyzing the data. An example may help better clarify some of the various aspects of qualitative research.

A researcher wants to decrease the number of teenagers who smoke in their community. The researcher could begin by asking current teen smokers why they started smoking through structured or unstructured interviews (qualitative research). The researcher can also get together a group of current teenage smokers and conduct a focus group to help brainstorm factors that may have prevented them from starting to smoke (qualitative research).

In this example, the researcher has used qualitative research methods (interviews and focus groups) to generate a list of ideas of both why teens start to smoke as well as factors that may have prevented them from starting to smoke. Next, the researcher compiles this data. The research found that, hypothetically, peer pressure, health issues, cost, being considered “cool,” and rebellious behavior all might increase or decrease the likelihood of teens starting to smoke.

The researcher creates a survey asking teen participants to rank how important each of the above factors is in either starting smoking (for current smokers) or not smoking (for current non-smokers). This survey provides specific numbers (ranked importance of each factor) and is thus a quantitative research tool.

The researcher can use the results of the survey to focus efforts on the one or two highest-ranked factors. Let us say the researcher found that health was the major factor that keeps teens from starting to smoke, and peer pressure was the major factor that contributed to teens to start smoking. The researcher can go back to qualitative research methods to dive deeper into each of these for more information. The researcher wants to focus on how to keep teens from starting to smoke, so they focus on the peer pressure aspect.

The researcher can conduct interviews and/or focus groups (qualitative research) about what types and forms of peer pressure are commonly encountered, where the peer pressure comes from, and where smoking first starts. The researcher hypothetically finds that peer pressure often occurs after school at the local teen hangouts, mostly the local park. The researcher also hypothetically finds that peer pressure comes from older, current smokers who provide the cigarettes.

The researcher could further explore this observation made at the local teen hangouts (qualitative research) and take notes regarding who is smoking, who is not, and what observable factors are at play for peer pressure of smoking. The researcher finds a local park where many local teenagers hang out and see that a shady, overgrown area of the park is where the smokers tend to hang out. The researcher notes the smoking teenagers buy their cigarettes from a local convenience store adjacent to the park where the clerk does not check identification before selling cigarettes. These observations fall under qualitative research.

If the researcher returns to the park and counts how many individuals smoke in each region of the park, this numerical data would be quantitative research. Based on the researcher's efforts thus far, they conclude that local teen smoking and teenagers who start to smoke may decrease if there are fewer overgrown areas of the park and the local convenience store does not sell cigarettes to underage individuals.

The researcher could try to have the parks department reassess the shady areas to make them less conducive to the smokers or identify how to limit the sales of cigarettes to underage individuals by the convenience store. The researcher would then cycle back to qualitative methods of asking at-risk population their perceptions of the changes, what factors are still at play, as well as quantitative research that includes teen smoking rates in the community, the incidence of new teen smokers, among others. [14] [15]

Qualitative research functions as a standalone research design or in combination with quantitative research to enhance our understanding of the world. Qualitative research uses techniques including structured and unstructured interviews, focus groups, and participant observation to not only help generate hypotheses which can be more rigorously tested with quantitative research but also to help researchers delve deeper into the quantitative research numbers, understand what they mean, and understand what the implications are.  Qualitative research provides researchers with a way to understand what is going on, especially when things are not easily categorized. [16]

• Issues of Concern

As discussed in the sections above, quantitative and qualitative work differ in many different ways, including the criteria for evaluating them. There are four well-established criteria for evaluating quantitative data: internal validity, external validity, reliability, and objectivity. The correlating concepts in qualitative research are credibility, transferability, dependability, and confirmability. [4] [11] The corresponding quantitative and qualitative concepts can be seen below, with the quantitative concept is on the left, and the qualitative concept is on the right:

• Internal validity--- Credibility
• External validity---Transferability
• Reliability---Dependability
• Objectivity---Confirmability

In conducting qualitative research, ensuring these concepts are satisfied and well thought out can mitigate potential issues from arising. For example, just as a researcher will ensure that their quantitative study is internally valid so should qualitative researchers ensure that their work has credibility.  

Indicators such as triangulation and peer examination can help evaluate the credibility of qualitative work.

• Triangulation: Triangulation involves using multiple methods of data collection to increase the likelihood of getting a reliable and accurate result. In our above magic example, the result would be more reliable by also interviewing the magician, back-stage hand, and the person who "vanished." In qualitative research, triangulation can include using telephone surveys, in-person surveys, focus groups, and interviews as well as surveying an adequate cross-section of the target demographic.
• Peer examination: Results can be reviewed by a peer to ensure the data is consistent with the findings.

‘Thick’ or ‘rich’ description can be used to evaluate the transferability of qualitative research whereas using an indicator such as an audit trail might help with evaluating the dependability and confirmability.

• Thick or rich description is a detailed and thorough description of details, the setting, and quotes from participants in the research. [5] Thick descriptions will include a detailed explanation of how the study was carried out. Thick descriptions are detailed enough to allow readers to draw conclusions and interpret the data themselves, which can help with transferability and replicability.
• Audit trail: An audit trail provides a documented set of steps of how the participants were selected and the data was collected. The original records of information should also be kept (e.g., surveys, notes, recordings).

One issue of concern that qualitative researchers should take into consideration is observation bias. Here are a few examples:

• Hawthorne effect: The Hawthorne effect is the change in participant behavior when they know they are being observed. If a researcher was wanting to identify factors that contribute to employee theft and tells the employees they are going to watch them to see what factors affect employee theft, one would suspect employee behavior would change when they know they are being watched.
• Observer-expectancy effect: Some participants change their behavior or responses to satisfy the researcher's desired effect. This happens in an unconscious manner for the participant so it is important to eliminate or limit transmitting the researcher's views.
• Artificial scenario effect: Some qualitative research occurs in artificial scenarios and/or with preset goals. In such situations, the information may not be accurate because of the artificial nature of the scenario. The preset goals may limit the qualitative information obtained.
• Clinical Significance

Qualitative research by itself or combined with quantitative research helps healthcare providers understand patients and the impact and challenges of the care they deliver. Qualitative research provides an opportunity to generate and refine hypotheses and delve deeper into the data generated by quantitative research. Qualitative research does not exist as an island apart from quantitative research, but as an integral part of research methods to be used for the understanding of the world around us. [17]

• Enhancing Healthcare Team Outcomes

Qualitative research is important for all members of the health care team as all are affected by qualitative research. Qualitative research may help develop a theory or a model for health research that can be further explored by quantitative research.  Much of the qualitative research data acquisition is completed by numerous team members including social works, scientists, nurses, etc.  Within each area of the medical field, there is copious ongoing qualitative research including physician-patient interactions, nursing-patient interactions, patient-environment interactions, health care team function, patient information delivery, etc. 

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

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

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

This book is distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ), which permits others to distribute the work, provided that the article is not altered or used commercially. You are not required to obtain permission to distribute this article, provided that you credit the author and journal.

• Cite this Page Tenny S, Brannan JM, Brannan GD. Qualitative Study. [Updated 2022 Sep 18]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-.

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• What Is Qualitative Research? | Methods & Examples

What Is Qualitative Research? | Methods & Examples

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

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

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

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

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

Table of contents

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

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

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

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

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

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

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

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

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

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

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

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

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

• Flexibility

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

• Natural settings

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

• Meaningful insights

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

• Generation of new ideas

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

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

• Unreliability

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

• Subjectivity

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

• Limited generalizability

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

• Labor-intensive

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

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

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

Research bias

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

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

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

There are five common approaches to qualitative research :

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

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

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

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

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

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Qualitative Research : Definition

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

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• Last Updated: Apr 2, 2024 10:41 AM
• URL: https://guides.library.stanford.edu/qualitative_research

• Open access
• Published: 27 May 2020

How to use and assess qualitative research methods

• Loraine Busetto   ORCID: orcid.org/0000-0002-9228-7875 1 ,
• Wolfgang Wick 1 , 2 &
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Neurological Research and Practice volume  2 , Article number:  14 ( 2020 ) Cite this article

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This paper aims to provide an overview of the use and assessment of qualitative research methods in the health sciences. Qualitative research can be defined as the study of the nature of phenomena and is especially appropriate for answering questions of why something is (not) observed, assessing complex multi-component interventions, and focussing on intervention improvement. The most common methods of data collection are document study, (non-) participant observations, semi-structured interviews and focus groups. For data analysis, field-notes and audio-recordings are transcribed into protocols and transcripts, and coded using qualitative data management software. Criteria such as checklists, reflexivity, sampling strategies, piloting, co-coding, member-checking and stakeholder involvement can be used to enhance and assess the quality of the research conducted. Using qualitative in addition to quantitative designs will equip us with better tools to address a greater range of research problems, and to fill in blind spots in current neurological research and practice.

The aim of this paper is to provide an overview of qualitative research methods, including hands-on information on how they can be used, reported and assessed. This article is intended for beginning qualitative researchers in the health sciences as well as experienced quantitative researchers who wish to broaden their understanding of qualitative research.

What is qualitative research?

Qualitative research is defined as “the study of the nature of phenomena”, including “their quality, different manifestations, the context in which they appear or the perspectives from which they can be perceived” , but excluding “their range, frequency and place in an objectively determined chain of cause and effect” [ 1 ]. This formal definition can be complemented with a more pragmatic rule of thumb: qualitative research generally includes data in form of words rather than numbers [ 2 ].

Why conduct qualitative research?

Because some research questions cannot be answered using (only) quantitative methods. For example, one Australian study addressed the issue of why patients from Aboriginal communities often present late or not at all to specialist services offered by tertiary care hospitals. Using qualitative interviews with patients and staff, it found one of the most significant access barriers to be transportation problems, including some towns and communities simply not having a bus service to the hospital [ 3 ]. A quantitative study could have measured the number of patients over time or even looked at possible explanatory factors – but only those previously known or suspected to be of relevance. To discover reasons for observed patterns, especially the invisible or surprising ones, qualitative designs are needed.

While qualitative research is common in other fields, it is still relatively underrepresented in health services research. The latter field is more traditionally rooted in the evidence-based-medicine paradigm, as seen in " research that involves testing the effectiveness of various strategies to achieve changes in clinical practice, preferably applying randomised controlled trial study designs (...) " [ 4 ]. This focus on quantitative research and specifically randomised controlled trials (RCT) is visible in the idea of a hierarchy of research evidence which assumes that some research designs are objectively better than others, and that choosing a "lesser" design is only acceptable when the better ones are not practically or ethically feasible [ 5 , 6 ]. Others, however, argue that an objective hierarchy does not exist, and that, instead, the research design and methods should be chosen to fit the specific research question at hand – "questions before methods" [ 2 , 7 , 8 , 9 ]. This means that even when an RCT is possible, some research problems require a different design that is better suited to addressing them. Arguing in JAMA, Berwick uses the example of rapid response teams in hospitals, which he describes as " a complex, multicomponent intervention – essentially a process of social change" susceptible to a range of different context factors including leadership or organisation history. According to him, "[in] such complex terrain, the RCT is an impoverished way to learn. Critics who use it as a truth standard in this context are incorrect" [ 8 ] . Instead of limiting oneself to RCTs, Berwick recommends embracing a wider range of methods , including qualitative ones, which for "these specific applications, (...) are not compromises in learning how to improve; they are superior" [ 8 ].

Research problems that can be approached particularly well using qualitative methods include assessing complex multi-component interventions or systems (of change), addressing questions beyond “what works”, towards “what works for whom when, how and why”, and focussing on intervention improvement rather than accreditation [ 7 , 9 , 10 , 11 , 12 ]. Using qualitative methods can also help shed light on the “softer” side of medical treatment. For example, while quantitative trials can measure the costs and benefits of neuro-oncological treatment in terms of survival rates or adverse effects, qualitative research can help provide a better understanding of patient or caregiver stress, visibility of illness or out-of-pocket expenses.

How to conduct qualitative research?

Given that qualitative research is characterised by flexibility, openness and responsivity to context, the steps of data collection and analysis are not as separate and consecutive as they tend to be in quantitative research [ 13 , 14 ]. As Fossey puts it : “sampling, data collection, analysis and interpretation are related to each other in a cyclical (iterative) manner, rather than following one after another in a stepwise approach” [ 15 ]. The researcher can make educated decisions with regard to the choice of method, how they are implemented, and to which and how many units they are applied [ 13 ]. As shown in Fig.  1 , this can involve several back-and-forth steps between data collection and analysis where new insights and experiences can lead to adaption and expansion of the original plan. Some insights may also necessitate a revision of the research question and/or the research design as a whole. The process ends when saturation is achieved, i.e. when no relevant new information can be found (see also below: sampling and saturation). For reasons of transparency, it is essential for all decisions as well as the underlying reasoning to be well-documented.

Iterative research process

While it is not always explicitly addressed, qualitative methods reflect a different underlying research paradigm than quantitative research (e.g. constructivism or interpretivism as opposed to positivism). The choice of methods can be based on the respective underlying substantive theory or theoretical framework used by the researcher [ 2 ].

Data collection

The methods of qualitative data collection most commonly used in health research are document study, observations, semi-structured interviews and focus groups [ 1 , 14 , 16 , 17 ].

Document study

Document study (also called document analysis) refers to the review by the researcher of written materials [ 14 ]. These can include personal and non-personal documents such as archives, annual reports, guidelines, policy documents, diaries or letters.

Observations

Observations are particularly useful to gain insights into a certain setting and actual behaviour – as opposed to reported behaviour or opinions [ 13 ]. Qualitative observations can be either participant or non-participant in nature. In participant observations, the observer is part of the observed setting, for example a nurse working in an intensive care unit [ 18 ]. In non-participant observations, the observer is “on the outside looking in”, i.e. present in but not part of the situation, trying not to influence the setting by their presence. Observations can be planned (e.g. for 3 h during the day or night shift) or ad hoc (e.g. as soon as a stroke patient arrives at the emergency room). During the observation, the observer takes notes on everything or certain pre-determined parts of what is happening around them, for example focusing on physician-patient interactions or communication between different professional groups. Written notes can be taken during or after the observations, depending on feasibility (which is usually lower during participant observations) and acceptability (e.g. when the observer is perceived to be judging the observed). Afterwards, these field notes are transcribed into observation protocols. If more than one observer was involved, field notes are taken independently, but notes can be consolidated into one protocol after discussions. Advantages of conducting observations include minimising the distance between the researcher and the researched, the potential discovery of topics that the researcher did not realise were relevant and gaining deeper insights into the real-world dimensions of the research problem at hand [ 18 ].

Semi-structured interviews

Hijmans & Kuyper describe qualitative interviews as “an exchange with an informal character, a conversation with a goal” [ 19 ]. Interviews are used to gain insights into a person’s subjective experiences, opinions and motivations – as opposed to facts or behaviours [ 13 ]. Interviews can be distinguished by the degree to which they are structured (i.e. a questionnaire), open (e.g. free conversation or autobiographical interviews) or semi-structured [ 2 , 13 ]. Semi-structured interviews are characterized by open-ended questions and the use of an interview guide (or topic guide/list) in which the broad areas of interest, sometimes including sub-questions, are defined [ 19 ]. The pre-defined topics in the interview guide can be derived from the literature, previous research or a preliminary method of data collection, e.g. document study or observations. The topic list is usually adapted and improved at the start of the data collection process as the interviewer learns more about the field [ 20 ]. Across interviews the focus on the different (blocks of) questions may differ and some questions may be skipped altogether (e.g. if the interviewee is not able or willing to answer the questions or for concerns about the total length of the interview) [ 20 ]. Qualitative interviews are usually not conducted in written format as it impedes on the interactive component of the method [ 20 ]. In comparison to written surveys, qualitative interviews have the advantage of being interactive and allowing for unexpected topics to emerge and to be taken up by the researcher. This can also help overcome a provider or researcher-centred bias often found in written surveys, which by nature, can only measure what is already known or expected to be of relevance to the researcher. Interviews can be audio- or video-taped; but sometimes it is only feasible or acceptable for the interviewer to take written notes [ 14 , 16 , 20 ].

Focus groups

Focus groups are group interviews to explore participants’ expertise and experiences, including explorations of how and why people behave in certain ways [ 1 ]. Focus groups usually consist of 6–8 people and are led by an experienced moderator following a topic guide or “script” [ 21 ]. They can involve an observer who takes note of the non-verbal aspects of the situation, possibly using an observation guide [ 21 ]. Depending on researchers’ and participants’ preferences, the discussions can be audio- or video-taped and transcribed afterwards [ 21 ]. Focus groups are useful for bringing together homogeneous (to a lesser extent heterogeneous) groups of participants with relevant expertise and experience on a given topic on which they can share detailed information [ 21 ]. Focus groups are a relatively easy, fast and inexpensive method to gain access to information on interactions in a given group, i.e. “the sharing and comparing” among participants [ 21 ]. Disadvantages include less control over the process and a lesser extent to which each individual may participate. Moreover, focus group moderators need experience, as do those tasked with the analysis of the resulting data. Focus groups can be less appropriate for discussing sensitive topics that participants might be reluctant to disclose in a group setting [ 13 ]. Moreover, attention must be paid to the emergence of “groupthink” as well as possible power dynamics within the group, e.g. when patients are awed or intimidated by health professionals.

Choosing the “right” method

As explained above, the school of thought underlying qualitative research assumes no objective hierarchy of evidence and methods. This means that each choice of single or combined methods has to be based on the research question that needs to be answered and a critical assessment with regard to whether or to what extent the chosen method can accomplish this – i.e. the “fit” between question and method [ 14 ]. It is necessary for these decisions to be documented when they are being made, and to be critically discussed when reporting methods and results.

Let us assume that our research aim is to examine the (clinical) processes around acute endovascular treatment (EVT), from the patient’s arrival at the emergency room to recanalization, with the aim to identify possible causes for delay and/or other causes for sub-optimal treatment outcome. As a first step, we could conduct a document study of the relevant standard operating procedures (SOPs) for this phase of care – are they up-to-date and in line with current guidelines? Do they contain any mistakes, irregularities or uncertainties that could cause delays or other problems? Regardless of the answers to these questions, the results have to be interpreted based on what they are: a written outline of what care processes in this hospital should look like. If we want to know what they actually look like in practice, we can conduct observations of the processes described in the SOPs. These results can (and should) be analysed in themselves, but also in comparison to the results of the document analysis, especially as regards relevant discrepancies. Do the SOPs outline specific tests for which no equipment can be observed or tasks to be performed by specialized nurses who are not present during the observation? It might also be possible that the written SOP is outdated, but the actual care provided is in line with current best practice. In order to find out why these discrepancies exist, it can be useful to conduct interviews. Are the physicians simply not aware of the SOPs (because their existence is limited to the hospital’s intranet) or do they actively disagree with them or does the infrastructure make it impossible to provide the care as described? Another rationale for adding interviews is that some situations (or all of their possible variations for different patient groups or the day, night or weekend shift) cannot practically or ethically be observed. In this case, it is possible to ask those involved to report on their actions – being aware that this is not the same as the actual observation. A senior physician’s or hospital manager’s description of certain situations might differ from a nurse’s or junior physician’s one, maybe because they intentionally misrepresent facts or maybe because different aspects of the process are visible or important to them. In some cases, it can also be relevant to consider to whom the interviewee is disclosing this information – someone they trust, someone they are otherwise not connected to, or someone they suspect or are aware of being in a potentially “dangerous” power relationship to them. Lastly, a focus group could be conducted with representatives of the relevant professional groups to explore how and why exactly they provide care around EVT. The discussion might reveal discrepancies (between SOPs and actual care or between different physicians) and motivations to the researchers as well as to the focus group members that they might not have been aware of themselves. For the focus group to deliver relevant information, attention has to be paid to its composition and conduct, for example, to make sure that all participants feel safe to disclose sensitive or potentially problematic information or that the discussion is not dominated by (senior) physicians only. The resulting combination of data collection methods is shown in Fig.  2 .

Possible combination of data collection methods

Attributions for icons: “Book” by Serhii Smirnov, “Interview” by Adrien Coquet, FR, “Magnifying Glass” by anggun, ID, “Business communication” by Vectors Market; all from the Noun Project

The combination of multiple data source as described for this example can be referred to as “triangulation”, in which multiple measurements are carried out from different angles to achieve a more comprehensive understanding of the phenomenon under study [ 22 , 23 ].

Data analysis

To analyse the data collected through observations, interviews and focus groups these need to be transcribed into protocols and transcripts (see Fig.  3 ). Interviews and focus groups can be transcribed verbatim , with or without annotations for behaviour (e.g. laughing, crying, pausing) and with or without phonetic transcription of dialects and filler words, depending on what is expected or known to be relevant for the analysis. In the next step, the protocols and transcripts are coded , that is, marked (or tagged, labelled) with one or more short descriptors of the content of a sentence or paragraph [ 2 , 15 , 23 ]. Jansen describes coding as “connecting the raw data with “theoretical” terms” [ 20 ]. In a more practical sense, coding makes raw data sortable. This makes it possible to extract and examine all segments describing, say, a tele-neurology consultation from multiple data sources (e.g. SOPs, emergency room observations, staff and patient interview). In a process of synthesis and abstraction, the codes are then grouped, summarised and/or categorised [ 15 , 20 ]. The end product of the coding or analysis process is a descriptive theory of the behavioural pattern under investigation [ 20 ]. The coding process is performed using qualitative data management software, the most common ones being InVivo, MaxQDA and Atlas.ti. It should be noted that these are data management tools which support the analysis performed by the researcher(s) [ 14 ].

From data collection to data analysis

Attributions for icons: see Fig. 2 , also “Speech to text” by Trevor Dsouza, “Field Notes” by Mike O’Brien, US, “Voice Record” by ProSymbols, US, “Inspection” by Made, AU, and “Cloud” by Graphic Tigers; all from the Noun Project

How to report qualitative research?

Protocols of qualitative research can be published separately and in advance of the study results. However, the aim is not the same as in RCT protocols, i.e. to pre-define and set in stone the research questions and primary or secondary endpoints. Rather, it is a way to describe the research methods in detail, which might not be possible in the results paper given journals’ word limits. Qualitative research papers are usually longer than their quantitative counterparts to allow for deep understanding and so-called “thick description”. In the methods section, the focus is on transparency of the methods used, including why, how and by whom they were implemented in the specific study setting, so as to enable a discussion of whether and how this may have influenced data collection, analysis and interpretation. The results section usually starts with a paragraph outlining the main findings, followed by more detailed descriptions of, for example, the commonalities, discrepancies or exceptions per category [ 20 ]. Here it is important to support main findings by relevant quotations, which may add information, context, emphasis or real-life examples [ 20 , 23 ]. It is subject to debate in the field whether it is relevant to state the exact number or percentage of respondents supporting a certain statement (e.g. “Five interviewees expressed negative feelings towards XYZ”) [ 21 ].

How to combine qualitative with quantitative research?

Qualitative methods can be combined with other methods in multi- or mixed methods designs, which “[employ] two or more different methods [ …] within the same study or research program rather than confining the research to one single method” [ 24 ]. Reasons for combining methods can be diverse, including triangulation for corroboration of findings, complementarity for illustration and clarification of results, expansion to extend the breadth and range of the study, explanation of (unexpected) results generated with one method with the help of another, or offsetting the weakness of one method with the strength of another [ 1 , 17 , 24 , 25 , 26 ]. The resulting designs can be classified according to when, why and how the different quantitative and/or qualitative data strands are combined. The three most common types of mixed method designs are the convergent parallel design , the explanatory sequential design and the exploratory sequential design. The designs with examples are shown in Fig.  4 .

Three common mixed methods designs

In the convergent parallel design, a qualitative study is conducted in parallel to and independently of a quantitative study, and the results of both studies are compared and combined at the stage of interpretation of results. Using the above example of EVT provision, this could entail setting up a quantitative EVT registry to measure process times and patient outcomes in parallel to conducting the qualitative research outlined above, and then comparing results. Amongst other things, this would make it possible to assess whether interview respondents’ subjective impressions of patients receiving good care match modified Rankin Scores at follow-up, or whether observed delays in care provision are exceptions or the rule when compared to door-to-needle times as documented in the registry. In the explanatory sequential design, a quantitative study is carried out first, followed by a qualitative study to help explain the results from the quantitative study. This would be an appropriate design if the registry alone had revealed relevant delays in door-to-needle times and the qualitative study would be used to understand where and why these occurred, and how they could be improved. In the exploratory design, the qualitative study is carried out first and its results help informing and building the quantitative study in the next step [ 26 ]. If the qualitative study around EVT provision had shown a high level of dissatisfaction among the staff members involved, a quantitative questionnaire investigating staff satisfaction could be set up in the next step, informed by the qualitative study on which topics dissatisfaction had been expressed. Amongst other things, the questionnaire design would make it possible to widen the reach of the research to more respondents from different (types of) hospitals, regions, countries or settings, and to conduct sub-group analyses for different professional groups.

How to assess qualitative research?

A variety of assessment criteria and lists have been developed for qualitative research, ranging in their focus and comprehensiveness [ 14 , 17 , 27 ]. However, none of these has been elevated to the “gold standard” in the field. In the following, we therefore focus on a set of commonly used assessment criteria that, from a practical standpoint, a researcher can look for when assessing a qualitative research report or paper.

Assessors should check the authors’ use of and adherence to the relevant reporting checklists (e.g. Standards for Reporting Qualitative Research (SRQR)) to make sure all items that are relevant for this type of research are addressed [ 23 , 28 ]. Discussions of quantitative measures in addition to or instead of these qualitative measures can be a sign of lower quality of the research (paper). Providing and adhering to a checklist for qualitative research contributes to an important quality criterion for qualitative research, namely transparency [ 15 , 17 , 23 ].

Reflexivity

While methodological transparency and complete reporting is relevant for all types of research, some additional criteria must be taken into account for qualitative research. This includes what is called reflexivity, i.e. sensitivity to the relationship between the researcher and the researched, including how contact was established and maintained, or the background and experience of the researcher(s) involved in data collection and analysis. Depending on the research question and population to be researched this can be limited to professional experience, but it may also include gender, age or ethnicity [ 17 , 27 ]. These details are relevant because in qualitative research, as opposed to quantitative research, the researcher as a person cannot be isolated from the research process [ 23 ]. It may influence the conversation when an interviewed patient speaks to an interviewer who is a physician, or when an interviewee is asked to discuss a gynaecological procedure with a male interviewer, and therefore the reader must be made aware of these details [ 19 ].

Sampling and saturation

The aim of qualitative sampling is for all variants of the objects of observation that are deemed relevant for the study to be present in the sample “ to see the issue and its meanings from as many angles as possible” [ 1 , 16 , 19 , 20 , 27 ] , and to ensure “information-richness [ 15 ]. An iterative sampling approach is advised, in which data collection (e.g. five interviews) is followed by data analysis, followed by more data collection to find variants that are lacking in the current sample. This process continues until no new (relevant) information can be found and further sampling becomes redundant – which is called saturation [ 1 , 15 ] . In other words: qualitative data collection finds its end point not a priori , but when the research team determines that saturation has been reached [ 29 , 30 ].

This is also the reason why most qualitative studies use deliberate instead of random sampling strategies. This is generally referred to as “ purposive sampling” , in which researchers pre-define which types of participants or cases they need to include so as to cover all variations that are expected to be of relevance, based on the literature, previous experience or theory (i.e. theoretical sampling) [ 14 , 20 ]. Other types of purposive sampling include (but are not limited to) maximum variation sampling, critical case sampling or extreme or deviant case sampling [ 2 ]. In the above EVT example, a purposive sample could include all relevant professional groups and/or all relevant stakeholders (patients, relatives) and/or all relevant times of observation (day, night and weekend shift).

Assessors of qualitative research should check whether the considerations underlying the sampling strategy were sound and whether or how researchers tried to adapt and improve their strategies in stepwise or cyclical approaches between data collection and analysis to achieve saturation [ 14 ].

Good qualitative research is iterative in nature, i.e. it goes back and forth between data collection and analysis, revising and improving the approach where necessary. One example of this are pilot interviews, where different aspects of the interview (especially the interview guide, but also, for example, the site of the interview or whether the interview can be audio-recorded) are tested with a small number of respondents, evaluated and revised [ 19 ]. In doing so, the interviewer learns which wording or types of questions work best, or which is the best length of an interview with patients who have trouble concentrating for an extended time. Of course, the same reasoning applies to observations or focus groups which can also be piloted.

Ideally, coding should be performed by at least two researchers, especially at the beginning of the coding process when a common approach must be defined, including the establishment of a useful coding list (or tree), and when a common meaning of individual codes must be established [ 23 ]. An initial sub-set or all transcripts can be coded independently by the coders and then compared and consolidated after regular discussions in the research team. This is to make sure that codes are applied consistently to the research data.

Member checking

Member checking, also called respondent validation , refers to the practice of checking back with study respondents to see if the research is in line with their views [ 14 , 27 ]. This can happen after data collection or analysis or when first results are available [ 23 ]. For example, interviewees can be provided with (summaries of) their transcripts and asked whether they believe this to be a complete representation of their views or whether they would like to clarify or elaborate on their responses [ 17 ]. Respondents’ feedback on these issues then becomes part of the data collection and analysis [ 27 ].

Stakeholder involvement

In those niches where qualitative approaches have been able to evolve and grow, a new trend has seen the inclusion of patients and their representatives not only as study participants (i.e. “members”, see above) but as consultants to and active participants in the broader research process [ 31 , 32 , 33 ]. The underlying assumption is that patients and other stakeholders hold unique perspectives and experiences that add value beyond their own single story, making the research more relevant and beneficial to researchers, study participants and (future) patients alike [ 34 , 35 ]. Using the example of patients on or nearing dialysis, a recent scoping review found that 80% of clinical research did not address the top 10 research priorities identified by patients and caregivers [ 32 , 36 ]. In this sense, the involvement of the relevant stakeholders, especially patients and relatives, is increasingly being seen as a quality indicator in and of itself.

How not to assess qualitative research

The above overview does not include certain items that are routine in assessments of quantitative research. What follows is a non-exhaustive, non-representative, experience-based list of the quantitative criteria often applied to the assessment of qualitative research, as well as an explanation of the limited usefulness of these endeavours.

Protocol adherence

Given the openness and flexibility of qualitative research, it should not be assessed by how well it adheres to pre-determined and fixed strategies – in other words: its rigidity. Instead, the assessor should look for signs of adaptation and refinement based on lessons learned from earlier steps in the research process.

Sample size

For the reasons explained above, qualitative research does not require specific sample sizes, nor does it require that the sample size be determined a priori [ 1 , 14 , 27 , 37 , 38 , 39 ]. Sample size can only be a useful quality indicator when related to the research purpose, the chosen methodology and the composition of the sample, i.e. who was included and why.

Randomisation

While some authors argue that randomisation can be used in qualitative research, this is not commonly the case, as neither its feasibility nor its necessity or usefulness has been convincingly established for qualitative research [ 13 , 27 ]. Relevant disadvantages include the negative impact of a too large sample size as well as the possibility (or probability) of selecting “ quiet, uncooperative or inarticulate individuals ” [ 17 ]. Qualitative studies do not use control groups, either.

Interrater reliability, variability and other “objectivity checks”

The concept of “interrater reliability” is sometimes used in qualitative research to assess to which extent the coding approach overlaps between the two co-coders. However, it is not clear what this measure tells us about the quality of the analysis [ 23 ]. This means that these scores can be included in qualitative research reports, preferably with some additional information on what the score means for the analysis, but it is not a requirement. Relatedly, it is not relevant for the quality or “objectivity” of qualitative research to separate those who recruited the study participants and collected and analysed the data. Experiences even show that it might be better to have the same person or team perform all of these tasks [ 20 ]. First, when researchers introduce themselves during recruitment this can enhance trust when the interview takes place days or weeks later with the same researcher. Second, when the audio-recording is transcribed for analysis, the researcher conducting the interviews will usually remember the interviewee and the specific interview situation during data analysis. This might be helpful in providing additional context information for interpretation of data, e.g. on whether something might have been meant as a joke [ 18 ].

Not being quantitative research

Being qualitative research instead of quantitative research should not be used as an assessment criterion if it is used irrespectively of the research problem at hand. Similarly, qualitative research should not be required to be combined with quantitative research per se – unless mixed methods research is judged as inherently better than single-method research. In this case, the same criterion should be applied for quantitative studies without a qualitative component.

The main take-away points of this paper are summarised in Table 1 . We aimed to show that, if conducted well, qualitative research can answer specific research questions that cannot to be adequately answered using (only) quantitative designs. Seeing qualitative and quantitative methods as equal will help us become more aware and critical of the “fit” between the research problem and our chosen methods: I can conduct an RCT to determine the reasons for transportation delays of acute stroke patients – but should I? It also provides us with a greater range of tools to tackle a greater range of research problems more appropriately and successfully, filling in the blind spots on one half of the methodological spectrum to better address the whole complexity of neurological research and practice.

Availability of data and materials

Not applicable.

Abbreviations

Endovascular treatment

Randomised Controlled Trial

Standard Operating Procedure

Standards for Reporting Qualitative Research

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Criteria for Good Qualitative Research: A Comprehensive Review

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This review aims to synthesize a published set of evaluative criteria for good qualitative research. The aim is to shed light on existing standards for assessing the rigor of qualitative research encompassing a range of epistemological and ontological standpoints. Using a systematic search strategy, published journal articles that deliberate criteria for rigorous research were identified. Then, references of relevant articles were surveyed to find noteworthy, distinct, and well-defined pointers to good qualitative research. This review presents an investigative assessment of the pivotal features in qualitative research that can permit the readers to pass judgment on its quality and to condemn it as good research when objectively and adequately utilized. Overall, this review underlines the crux of qualitative research and accentuates the necessity to evaluate such research by the very tenets of its being. It also offers some prospects and recommendations to improve the quality of qualitative research. Based on the findings of this review, it is concluded that quality criteria are the aftereffect of socio-institutional procedures and existing paradigmatic conducts. Owing to the paradigmatic diversity of qualitative research, a single and specific set of quality criteria is neither feasible nor anticipated. Since qualitative research is not a cohesive discipline, researchers need to educate and familiarize themselves with applicable norms and decisive factors to evaluate qualitative research from within its theoretical and methodological framework of origin.

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Introduction

“… It is important to regularly dialogue about what makes for good qualitative research” (Tracy, 2010 , p. 837)

To decide what represents good qualitative research is highly debatable. There are numerous methods that are contained within qualitative research and that are established on diverse philosophical perspectives. Bryman et al., ( 2008 , p. 262) suggest that “It is widely assumed that whereas quality criteria for quantitative research are well‐known and widely agreed, this is not the case for qualitative research.” Hence, the question “how to evaluate the quality of qualitative research” has been continuously debated. There are many areas of science and technology wherein these debates on the assessment of qualitative research have taken place. Examples include various areas of psychology: general psychology (Madill et al., 2000 ); counseling psychology (Morrow, 2005 ); and clinical psychology (Barker & Pistrang, 2005 ), and other disciplines of social sciences: social policy (Bryman et al., 2008 ); health research (Sparkes, 2001 ); business and management research (Johnson et al., 2006 ); information systems (Klein & Myers, 1999 ); and environmental studies (Reid & Gough, 2000 ). In the literature, these debates are enthused by the impression that the blanket application of criteria for good qualitative research developed around the positivist paradigm is improper. Such debates are based on the wide range of philosophical backgrounds within which qualitative research is conducted (e.g., Sandberg, 2000 ; Schwandt, 1996 ). The existence of methodological diversity led to the formulation of different sets of criteria applicable to qualitative research.

Among qualitative researchers, the dilemma of governing the measures to assess the quality of research is not a new phenomenon, especially when the virtuous triad of objectivity, reliability, and validity (Spencer et al., 2004 ) are not adequate. Occasionally, the criteria of quantitative research are used to evaluate qualitative research (Cohen & Crabtree, 2008 ; Lather, 2004 ). Indeed, Howe ( 2004 ) claims that the prevailing paradigm in educational research is scientifically based experimental research. Hypotheses and conjectures about the preeminence of quantitative research can weaken the worth and usefulness of qualitative research by neglecting the prominence of harmonizing match for purpose on research paradigm, the epistemological stance of the researcher, and the choice of methodology. Researchers have been reprimanded concerning this in “paradigmatic controversies, contradictions, and emerging confluences” (Lincoln & Guba, 2000 ).

In general, qualitative research tends to come from a very different paradigmatic stance and intrinsically demands distinctive and out-of-the-ordinary criteria for evaluating good research and varieties of research contributions that can be made. This review attempts to present a series of evaluative criteria for qualitative researchers, arguing that their choice of criteria needs to be compatible with the unique nature of the research in question (its methodology, aims, and assumptions). This review aims to assist researchers in identifying some of the indispensable features or markers of high-quality qualitative research. In a nutshell, the purpose of this systematic literature review is to analyze the existing knowledge on high-quality qualitative research and to verify the existence of research studies dealing with the critical assessment of qualitative research based on the concept of diverse paradigmatic stances. Contrary to the existing reviews, this review also suggests some critical directions to follow to improve the quality of qualitative research in different epistemological and ontological perspectives. This review is also intended to provide guidelines for the acceleration of future developments and dialogues among qualitative researchers in the context of assessing the qualitative research.

The rest of this review article is structured in the following fashion: Sect.  Methods describes the method followed for performing this review. Section Criteria for Evaluating Qualitative Studies provides a comprehensive description of the criteria for evaluating qualitative studies. This section is followed by a summary of the strategies to improve the quality of qualitative research in Sect.  Improving Quality: Strategies . Section  How to Assess the Quality of the Research Findings? provides details on how to assess the quality of the research findings. After that, some of the quality checklists (as tools to evaluate quality) are discussed in Sect.  Quality Checklists: Tools for Assessing the Quality . At last, the review ends with the concluding remarks presented in Sect.  Conclusions, Future Directions and Outlook . Some prospects in qualitative research for enhancing its quality and usefulness in the social and techno-scientific research community are also presented in Sect.  Conclusions, Future Directions and Outlook .

For this review, a comprehensive literature search was performed from many databases using generic search terms such as Qualitative Research , Criteria , etc . The following databases were chosen for the literature search based on the high number of results: IEEE Explore, ScienceDirect, PubMed, Google Scholar, and Web of Science. The following keywords (and their combinations using Boolean connectives OR/AND) were adopted for the literature search: qualitative research, criteria, quality, assessment, and validity. The synonyms for these keywords were collected and arranged in a logical structure (see Table 1 ). All publications in journals and conference proceedings later than 1950 till 2021 were considered for the search. Other articles extracted from the references of the papers identified in the electronic search were also included. A large number of publications on qualitative research were retrieved during the initial screening. Hence, to include the searches with the main focus on criteria for good qualitative research, an inclusion criterion was utilized in the search string.

From the selected databases, the search retrieved a total of 765 publications. Then, the duplicate records were removed. After that, based on the title and abstract, the remaining 426 publications were screened for their relevance by using the following inclusion and exclusion criteria (see Table 2 ). Publications focusing on evaluation criteria for good qualitative research were included, whereas those works which delivered theoretical concepts on qualitative research were excluded. Based on the screening and eligibility, 45 research articles were identified that offered explicit criteria for evaluating the quality of qualitative research and were found to be relevant to this review.

Figure  1 illustrates the complete review process in the form of PRISMA flow diagram. PRISMA, i.e., “preferred reporting items for systematic reviews and meta-analyses” is employed in systematic reviews to refine the quality of reporting.

PRISMA flow diagram illustrating the search and inclusion process. N represents the number of records

Criteria for Evaluating Qualitative Studies

Fundamental criteria: general research quality.

Various researchers have put forward criteria for evaluating qualitative research, which have been summarized in Table 3 . Also, the criteria outlined in Table 4 effectively deliver the various approaches to evaluate and assess the quality of qualitative work. The entries in Table 4 are based on Tracy’s “Eight big‐tent criteria for excellent qualitative research” (Tracy, 2010 ). Tracy argues that high-quality qualitative work should formulate criteria focusing on the worthiness, relevance, timeliness, significance, morality, and practicality of the research topic, and the ethical stance of the research itself. Researchers have also suggested a series of questions as guiding principles to assess the quality of a qualitative study (Mays & Pope, 2020 ). Nassaji ( 2020 ) argues that good qualitative research should be robust, well informed, and thoroughly documented.

Qualitative Research: Interpretive Paradigms

All qualitative researchers follow highly abstract principles which bring together beliefs about ontology, epistemology, and methodology. These beliefs govern how the researcher perceives and acts. The net, which encompasses the researcher’s epistemological, ontological, and methodological premises, is referred to as a paradigm, or an interpretive structure, a “Basic set of beliefs that guides action” (Guba, 1990 ). Four major interpretive paradigms structure the qualitative research: positivist and postpositivist, constructivist interpretive, critical (Marxist, emancipatory), and feminist poststructural. The complexity of these four abstract paradigms increases at the level of concrete, specific interpretive communities. Table 5 presents these paradigms and their assumptions, including their criteria for evaluating research, and the typical form that an interpretive or theoretical statement assumes in each paradigm. Moreover, for evaluating qualitative research, quantitative conceptualizations of reliability and validity are proven to be incompatible (Horsburgh, 2003 ). In addition, a series of questions have been put forward in the literature to assist a reviewer (who is proficient in qualitative methods) for meticulous assessment and endorsement of qualitative research (Morse, 2003 ). Hammersley ( 2007 ) also suggests that guiding principles for qualitative research are advantageous, but methodological pluralism should not be simply acknowledged for all qualitative approaches. Seale ( 1999 ) also points out the significance of methodological cognizance in research studies.

Table 5 reflects that criteria for assessing the quality of qualitative research are the aftermath of socio-institutional practices and existing paradigmatic standpoints. Owing to the paradigmatic diversity of qualitative research, a single set of quality criteria is neither possible nor desirable. Hence, the researchers must be reflexive about the criteria they use in the various roles they play within their research community.

Improving Quality: Strategies

Another critical question is “How can the qualitative researchers ensure that the abovementioned quality criteria can be met?” Lincoln and Guba ( 1986 ) delineated several strategies to intensify each criteria of trustworthiness. Other researchers (Merriam & Tisdell, 2016 ; Shenton, 2004 ) also presented such strategies. A brief description of these strategies is shown in Table 6 .

It is worth mentioning that generalizability is also an integral part of qualitative research (Hays & McKibben, 2021 ). In general, the guiding principle pertaining to generalizability speaks about inducing and comprehending knowledge to synthesize interpretive components of an underlying context. Table 7 summarizes the main metasynthesis steps required to ascertain generalizability in qualitative research.

Figure  2 reflects the crucial components of a conceptual framework and their contribution to decisions regarding research design, implementation, and applications of results to future thinking, study, and practice (Johnson et al., 2020 ). The synergy and interrelationship of these components signifies their role to different stances of a qualitative research study.

Essential elements of a conceptual framework

In a nutshell, to assess the rationale of a study, its conceptual framework and research question(s), quality criteria must take account of the following: lucid context for the problem statement in the introduction; well-articulated research problems and questions; precise conceptual framework; distinct research purpose; and clear presentation and investigation of the paradigms. These criteria would expedite the quality of qualitative research.

How to Assess the Quality of the Research Findings?

The inclusion of quotes or similar research data enhances the confirmability in the write-up of the findings. The use of expressions (for instance, “80% of all respondents agreed that” or “only one of the interviewees mentioned that”) may also quantify qualitative findings (Stenfors et al., 2020 ). On the other hand, the persuasive reason for “why this may not help in intensifying the research” has also been provided (Monrouxe & Rees, 2020 ). Further, the Discussion and Conclusion sections of an article also prove robust markers of high-quality qualitative research, as elucidated in Table 8 .

Quality Checklists: Tools for Assessing the Quality

Numerous checklists are available to speed up the assessment of the quality of qualitative research. However, if used uncritically and recklessly concerning the research context, these checklists may be counterproductive. I recommend that such lists and guiding principles may assist in pinpointing the markers of high-quality qualitative research. However, considering enormous variations in the authors’ theoretical and philosophical contexts, I would emphasize that high dependability on such checklists may say little about whether the findings can be applied in your setting. A combination of such checklists might be appropriate for novice researchers. Some of these checklists are listed below:

The most commonly used framework is Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al., 2007 ). This framework is recommended by some journals to be followed by the authors during article submission.

Standards for Reporting Qualitative Research (SRQR) is another checklist that has been created particularly for medical education (O’Brien et al., 2014 ).

Also, Tracy ( 2010 ) and Critical Appraisal Skills Programme (CASP, 2021 ) offer criteria for qualitative research relevant across methods and approaches.

Further, researchers have also outlined different criteria as hallmarks of high-quality qualitative research. For instance, the “Road Trip Checklist” (Epp & Otnes, 2021 ) provides a quick reference to specific questions to address different elements of high-quality qualitative research.

Conclusions, Future Directions, and Outlook

This work presents a broad review of the criteria for good qualitative research. In addition, this article presents an exploratory analysis of the essential elements in qualitative research that can enable the readers of qualitative work to judge it as good research when objectively and adequately utilized. In this review, some of the essential markers that indicate high-quality qualitative research have been highlighted. I scope them narrowly to achieve rigor in qualitative research and note that they do not completely cover the broader considerations necessary for high-quality research. This review points out that a universal and versatile one-size-fits-all guideline for evaluating the quality of qualitative research does not exist. In other words, this review also emphasizes the non-existence of a set of common guidelines among qualitative researchers. In unison, this review reinforces that each qualitative approach should be treated uniquely on account of its own distinctive features for different epistemological and disciplinary positions. Owing to the sensitivity of the worth of qualitative research towards the specific context and the type of paradigmatic stance, researchers should themselves analyze what approaches can be and must be tailored to ensemble the distinct characteristics of the phenomenon under investigation. Although this article does not assert to put forward a magic bullet and to provide a one-stop solution for dealing with dilemmas about how, why, or whether to evaluate the “goodness” of qualitative research, it offers a platform to assist the researchers in improving their qualitative studies. This work provides an assembly of concerns to reflect on, a series of questions to ask, and multiple sets of criteria to look at, when attempting to determine the quality of qualitative research. Overall, this review underlines the crux of qualitative research and accentuates the need to evaluate such research by the very tenets of its being. Bringing together the vital arguments and delineating the requirements that good qualitative research should satisfy, this review strives to equip the researchers as well as reviewers to make well-versed judgment about the worth and significance of the qualitative research under scrutiny. In a nutshell, a comprehensive portrayal of the research process (from the context of research to the research objectives, research questions and design, speculative foundations, and from approaches of collecting data to analyzing the results, to deriving inferences) frequently proliferates the quality of a qualitative research.

Prospects : A Road Ahead for Qualitative Research

Irrefutably, qualitative research is a vivacious and evolving discipline wherein different epistemological and disciplinary positions have their own characteristics and importance. In addition, not surprisingly, owing to the sprouting and varied features of qualitative research, no consensus has been pulled off till date. Researchers have reflected various concerns and proposed several recommendations for editors and reviewers on conducting reviews of critical qualitative research (Levitt et al., 2021 ; McGinley et al., 2021 ). Following are some prospects and a few recommendations put forward towards the maturation of qualitative research and its quality evaluation:

In general, most of the manuscript and grant reviewers are not qualitative experts. Hence, it is more likely that they would prefer to adopt a broad set of criteria. However, researchers and reviewers need to keep in mind that it is inappropriate to utilize the same approaches and conducts among all qualitative research. Therefore, future work needs to focus on educating researchers and reviewers about the criteria to evaluate qualitative research from within the suitable theoretical and methodological context.

There is an urgent need to refurbish and augment critical assessment of some well-known and widely accepted tools (including checklists such as COREQ, SRQR) to interrogate their applicability on different aspects (along with their epistemological ramifications).

Efforts should be made towards creating more space for creativity, experimentation, and a dialogue between the diverse traditions of qualitative research. This would potentially help to avoid the enforcement of one's own set of quality criteria on the work carried out by others.

Moreover, journal reviewers need to be aware of various methodological practices and philosophical debates.

It is pivotal to highlight the expressions and considerations of qualitative researchers and bring them into a more open and transparent dialogue about assessing qualitative research in techno-scientific, academic, sociocultural, and political rooms.

Frequent debates on the use of evaluative criteria are required to solve some potentially resolved issues (including the applicability of a single set of criteria in multi-disciplinary aspects). Such debates would not only benefit the group of qualitative researchers themselves, but primarily assist in augmenting the well-being and vivacity of the entire discipline.

To conclude, I speculate that the criteria, and my perspective, may transfer to other methods, approaches, and contexts. I hope that they spark dialog and debate – about criteria for excellent qualitative research and the underpinnings of the discipline more broadly – and, therefore, help improve the quality of a qualitative study. Further, I anticipate that this review will assist the researchers to contemplate on the quality of their own research, to substantiate research design and help the reviewers to review qualitative research for journals. On a final note, I pinpoint the need to formulate a framework (encompassing the prerequisites of a qualitative study) by the cohesive efforts of qualitative researchers of different disciplines with different theoretic-paradigmatic origins. I believe that tailoring such a framework (of guiding principles) paves the way for qualitative researchers to consolidate the status of qualitative research in the wide-ranging open science debate. Dialogue on this issue across different approaches is crucial for the impending prospects of socio-techno-educational research.

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Yadav, D. Criteria for Good Qualitative Research: A Comprehensive Review. Asia-Pacific Edu Res 31 , 679–689 (2022). https://doi.org/10.1007/s40299-021-00619-0

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Chapter 1. Introduction

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

Why an Open Access Textbook on Qualitative Research Methods?

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

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

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

What is Research?

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

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

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

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

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

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

What is Qualitative Research?

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

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

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

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

Examples of Qualitative Research

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

Example 1 : The End Game (ethnography + interviews)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How Is This Book Organized?

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

Chapter Descriptions

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Recommended Reading: Other Qualitative Research Textbooks

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

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

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

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

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

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

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

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

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

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

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

Patton’s Ten Suggestions for Doing Qualitative Research

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• Open access
• Published: 03 April 2024

Capturing artificial intelligence applications’ value proposition in healthcare – a qualitative research study

• Jasmin Hennrich 1 ,
• Eva Ritz 2 ,
• Peter Hofmann 1 , 4 &
• Nils Urbach 1 , 3  

BMC Health Services Research volume  24 , Article number:  420 ( 2024 ) Cite this article

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Artificial intelligence (AI) applications pave the way for innovations in the healthcare (HC) industry. However, their adoption in HC organizations is still nascent as organizations often face a fragmented and incomplete picture of how they can capture the value of AI applications on a managerial level. To overcome adoption hurdles, HC organizations would benefit from understanding how they can capture AI applications’ potential.

We conduct a comprehensive systematic literature review and 11 semi-structured expert interviews to identify, systematize, and describe 15 business objectives that translate into six value propositions of AI applications in HC.

Our results demonstrate that AI applications can have several business objectives converging into risk-reduced patient care, advanced patient care, self-management, process acceleration, resource optimization, and knowledge discovery.

We contribute to the literature by extending research on value creation mechanisms of AI to the HC context and guiding HC organizations in evaluating their AI applications or those of the competition on a managerial level, to assess AI investment decisions, and to align their AI application portfolio towards an overarching strategy.

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Applications based on artificial intelligence (AI) have the potential to transform the healthcare (HC) industry [ 1 ]. AI applications can be characterized as applications or agents with capabilities that typically demand intelligence [ 2 , 3 ]. In our context, we understand AI as a collection of technological solutions from the field of applied computer science, in which algorithms are trained on medical and HC data to perform tasks that are normally associated with human intelligence (i.e., medical decision-making) [ 4 ]. AI is not a single type of technology, instead, it encompasses a diverse array of technologies spread across various application areas in HC, such as diagnostics (e.g., [ 5 ], biomedical research (e.g., [ 6 ], clinical administration (e.g., [ 7 ], therapy (e.g., [ 8 ], and intelligent robotics (e.g., [ 9 ]. These areas are expected to benefit from AI applications’ capabilities, such as accuracy, objectivity, rapidity, data processing, and automation [ 10 , 11 ]. Accordingly, AI applications are said to have the potential to drive business value and enhance HC [ 12 ], paving the way for transformative innovations in the HC industry [ 13 ]. There are already many promising AI use cases in HC that are expected to improve patient care and create value for HC organizations. For instance, AI applications can advance the quality of patient care by supporting radiologists with more accurate and rapid diagnosis, compensating for humans’ limitations (e.g., data processing speeds) and weaknesses (e.g., inattention, distraction, and fatigue) [ 10 , 14 ]. Klicken oder tippen Sie hier, um Text einzugeben.While the use of AI applications in HC has the overarching goal of creating significant value for patients through improved care, they also come with the potential for business value creation and the opportunity for HC organizations to gain a competitive edge (e.g., [ 15 , 16 ]).

Despite the promised advantages, AI applications’ implementation is slow, and the full realization of their potential within the HC industry is yet to be achieved [ 11 , 17 ]. With just a handful of practical examples of AI applications in the HC industry [ 13 , 18 ], the adoption of AI applications is still in its infancy. The AI in Healthcare Survey Report stated that in 2021, only 9% of respondents worldwide have reached a sophisticated adoption of AI Models, while 32% of respondents are still in the early stages of adopting AI models. According to the survey, the majority of HC organizations (60%) are not actively considering AI as a solution, or they are currently evaluating AI use cases and experimenting with the implementation [ 19 ]. Nevertheless, HC startups are increasingly entering the market [ 20 ], pressuring incumbent HC organizations to evaluate and adopt AI applications. Existing studies already investigate AI technologies in various use cases in HC and provide insights on how to design AI-based services [ 21 ], explain in detail the technical functions and capabilities of AI technologies [ 10 , 11 ], or take on a practical perspective with a focus on concrete examples of AI applications [ 14 ]. However, to foster the adoption of AI applications, HC organizations should understand how they can unfold AI applications’ capabilities into business value to ensure effective investments. Previous studies on the intersection of information systems and value creation have expressed interest into how organizations can actually gain value through the use of technology and thus, enhance their adoption [ 22 , 23 ]. However, to the best of our knowledge, a comprehensive investigation of the value creation of AI applications in the context of HC from a managerial level is currently missing. Thus, our study aims to investigate AI applications’ value creation and capture mechanisms in the specific HC context by answering the following question: How can HC organizations create and capture AI applications’ value?

We conduct a systematic literature analysis and semi structured expert interviews to answer this research question. In the systematic literature analysis, we identify and analyze a heterogeneous set of 21 AI use cases across five different HC application fields and derive 15 business objectives and six value propositions for HC organizations. We then evaluate and refine the categorized business objectives and value propositions with insights from 11 expert interviews. Our study contributes to research on the value creation mechanism of AI applications in the HC context. Moreover, our results have managerial implications for HC organizations since they can draw on our results to evaluate AI applications, assess investment decisions, and align their AI application portfolio toward an overarching strategy.

In what follows, this study first grounds on relevant work to gain a deeper understanding of the underlying constructs of AI in HC. Next, we describe our qualitative research method by describing the process of data collection and analysis, followed by our derived results on capturing AI applications’ value proposition in HC. Afterward, we discuss our results, including this study’s limitations and pathways for further research. Finally, we summarize our findings and their contribution to theory and practice in the conclusion.

Relevant work

In the realm of AI, a thorough exploration of its key subdiscipline, machine learning (ML), is essential [ 24 , 25 ]. ML is a computational model that learns from data without explicitly programming the data [ 24 ] and can be further divided into supervised, unsupervised, and reinforcement learning [ 26 ]. In supervised learning, the machine undergoes training with labeled data, making it well-suited for tasks involving regression and classification problems [ 27 ]. In contrast, unsupervised learning is designed to automatically identify patterns within unlabeled datasets [ 28 ], with its primary utility lying in the extraction of features [ 11 ]. Reinforcement learning, characterized as a method of systematic experimentation or trial and error, involves a situated agent taking specific actions and observing the rewards it gains from those actions, facilitating the learning of behavior in a given environment [ 29 ]. The choice of which type of ML will be used in the different application areas depends on the specific problem, the availability of labeled data, and the nature of the desired outcome.

In recent years, the rapid advances in AI have triggered a revolution in various areas, with numerous impressive advantages. In the financial sector, AI applications can significantly improve security by detecting anomalies and preventing fraud [ 30 ]. Within education, AI has emerged as a powerful tool for tailoring learning experiences, aiming to enhance engagement, understanding, and retention [ 31 ]. In the energy market, the efficacy of AI extends to fault detection and diagnosis in building energy systems, showcasing its robust capabilities in ensuring system integrity [ 32 ]. Moreover, the HC industry is expected to be a promising application area for AI applications. The HC sector is undergoing a significant transformation due to the increasing adoption of digital technologies, with AI technologies at the forefront of this shift. The increasing relevance of AI technologies in HC is underlined by a growing and multidisciplinary stream of AI research, as highlighted by Secinaro et al. [ 33 ]. Taking a closer look at the different application areas in HC, AI applications offer promising potential, as demonstrated by the following exemplary AI use cases. In diagnosis, AI applications can identify complex patterns in medical image data more accurately, resulting in precise and objective disease recognition. This can improve patient safety by reducing the risks of misinterpretation [ 5 ]. Another use case can be found in biomedical research. For example, AI technology is commonly used for de novo drug design. AI can rapidly browse through molecule libraries to detect nearly \({10}^{60}\) drug-like molecules, accelerating the drug development process [ 6 ]. Furthermore, AI applications are used in clinical administration. They enable optimized operation room capacities by automating the process and by including information about absence or waiting times, as well as predicting interruptions [ 34 ]. Furthermore, AI applications are used in therapy by predicting personalized medication dosages. As this helps to reduce the mortality risk, it leads to enhanced patient outcomes and quality of care [ 35 ]. Intelligent prostheses by which patients can improve interactions are another use case. The AI algorithm continuously detects and classifies myoelectric signal patterns to predict movements, leading to reduced training expenditure and more self-management by the patient [ 36 ]. In summary, envisioning that AI applications successfully address persisting challenges, such as lack of transparency (e.g., [ 37 ], bias (e.g., [ 38 ], privacy concerns, and trust issues (e.g., [ 39 ], the potential of AI applications is vast. The conceivable benefits extend to individual practitioners and HC organizations, including hospitals, enabling them to harness AI applications for creating business value and ultimately enhancing competitiveness. Thereby, we follow Schryen’s (p. 141) revisited definition of business value of technologies: “the impact of investments on the multidimensional performance and capabilities of economic entities at various levels, complemented by the ultimate meaning of performance in the economic environment” [ 40 ]. His perspective includes all kinds of tangible value (such as an increase in productivity or reduced costs) to intangible value (such as service innovation or customer satisfaction), as well as internal value for the HC organizations and external value for stakeholders, shareholders, and customers. To create business value, it is essential to have a clear understanding of how the potential of AI applications can be captured. The understanding of how information systems, in general, create value is already covered in the literature. For example, Badakhshan et al. [ 31 ] focus on how process mining can pave the way to create business value. Leidner et al. [ 32 ] examine how enterprise social media adds value for new employees, and Lehrer et al. [ 33 ] answer the question of how big data analytics can enable service. There are also studies focusing on the value creation of information systems in the context of HC. For instance, the study by Haddad and Wickramasinghe [ 41 ] shows that information technology in HC can capture value by improving the quality of HC delivery, increasing safety, or offering additional services. Strong et al. [ 42 ] analyze how electronic health records afford value for HC organizations and determine goal-oriented actions to capture this potential. There is even literature on how machine learning adds value within the discipline of radiology (e.g., [ 43 ].

However, these studies either do not address the context of HC, consider technologies other than AI or information systems in general, or focus only on a small area of HC (e.g., radiology) and a subset of AI technology (e.g., machine learning). Although these studies deliver valuable insights into the value creation of information systems, a comprehensive picture of how HC organizations can capture business value with AI applications is missing.

To answer our research question, we adopted a qualitative inductive research design. This research design is consistent with studies that took a similar perspective on how technologies can create business value [ 44 ]. In conducting our structured literature review, we followed the approach of Webster and Watson [ 45 ] and included recommendations of Wolfswinkel et al. [ 46 ] when considering the inclusion and exclusion criteria. We started by collecting relevant data on different successful AI use cases across five application areas in HC. Siggelkow [ 47 ] argued that use cases are able to provide persuasive arguments for causal relationships. In an initial literature screening, we identified five promising application domains focusing on AI applications for patients and HC providers: disease diagnostics (DD) (e.g., [ 5 ], biomedical research (BR) (e.g., [ 6 ], clinical administration (CA) (e.g., [ 7 ], therapy (T) (e.g., [ 8 ], and intelligent robotics (IR) (e.g., [ 9 ]. Second, to sample AI use cases, we aimed to collect a heterogeneous set of AI use cases within these application domains and consider the heterogeneity in AI applications, underlying data, innovation types, and implementation stages when selecting 21 AI use cases for our in-depth analysis. The AI use case and an exemplary study for each use case are listed in Table  1 .

After sampling the AI use cases, we used PubMed to identify papers for each use case. PubMed is recognized as a common database for biomedical and medical research for HC topics in the information systems domain (e.g., [ 62 , 63 ]. Our search included journal articles, clinical conferences, clinical studies, and comparative studies in English as of 2010. Based on the AI use case sample, we derived a search string based on keywords [ 45 ] considering titles and abstracts by following Shepherd et al. [ 62 ] guidelines. It was aimed to narrow and specific selection to increase data collection replicability for the use cases. Boolean operators (AND, OR) are used to improve results by combining search terms [ 62 ].

((artificial intelligence AND (radiology OR (cancer AND imaging) OR (radiology AND error) OR (cancer AND genomics) OR (speech AND cognitive AND impairment) OR (voice AND parkinson) OR EEG OR (facial AND analysis) OR (drug AND design) OR (Drug AND Biomarker) OR De-identification OR Splicing OR (emergency AND triage) OR (mortality AND prediction) OR (operating AND room) OR text summarization OR (artificial AND pancreas) OR vasopressor OR Chatbot OR (myoelectric prosthesis) OR (automated surgery task) OR (surgery AND workflow)))

The initial search led to 877 results (see Fig.  1 ). After title screening, we eliminated 516 papers that are not relevant (i.e., not covering a specific AI application, only including the description of AI algorithm, or not including a managerial perspective and the value created by AI applications). We further excluded 162 papers because their abstract is not concurrent with any specific use case (e.g., because they were literature reviews on overarching topics and did not include a specific AI application). We screened the remaining 199 papers for eligibility through two content-related criteria. First, papers need to cover an AI use case’s whole value proposition creation path, including information on data, algorithms, functions, competitive advantage, and business value of a certain AI application. The papers often only examine how a certain application works but lack the value proposition perspective, which leads to the exclusion of 63 articles. Second, we removed 89 papers that do not match any of our use cases. This step led to a remaining set of 47 relevant papers. During a backward-forward search according to Webster and Watson [ 45 ] and Levy and Ellis [ 64 ], we additionally included 35 papers. We also incorporated previous and subsequent clinical studies of the same researcher, resulting in an additional six papers. The final set contains 88 relevant papers describing the identified AI use cases, whereby at least three papers describe each AI use case.

Search strategy

In the second step, we engaged in open, axial, and selective coding of the AI use cases following analysis techniques of grounded theory [ 65 ]. We focused on extracting business objectives, detailing how each AI application drives value. We documented these for each AI use case by recording codes of business objectives and value propositions and assigning relationships among the open codes. For example, from the following text passage of Berlyand et al. [ 56 ], who investigate the use case CA1: “Rapidly interpreting clinical data to classify patients and predict outcomes is paramount to emergency department operations, with direct impacts on cost, efficiency, and quality of care”, we derived the code rapid task execution.

After analyzing the AI use cases, we revised the documented tuples to foster consistency and comparability. Then, we iteratively coded the identified tuples by relying on selective coding techniques which is a process to identify and refine categories at a highly generalizable degree [ 65 ]. In all 14 coding iterations, one author continuously compares, relates, and associates categories and properties and discusses the coding results with another author. We modified some tuples during the coding process in two ways. First, we equalized small phrasing disparities for homogenous and refined wording. Second, we carefully adjusted the tuples regarding coherency. Finally, we reviewed the coding schema for internal validity through a final comparison with the data [ 66 ]. Then, we set the core variables “business objectives” and “value propositions”. We refer to business objectives as improvements through implementing the technology that drives a value proposition. We define value proposition as the inherent commitment to deliver reciprocal value to the organization, its customers, and/or partners [ 67 ].

In the third step following Schultze and Avital [ 68 ], we conducted semi structured expert interviews to evaluate and refine the value propositions and business objectives. We developed and refined an interview script following the guidelines of Meyers and Newman [ 69 ] for qualitative interviews. An additional file shows the used interview script (see Additional file 1 ). We conducted expert sampling to select suitable interviewees [ 70 ]. Due to the interdisciplinarity of the research topic, we chose experts in the two knowledge areas, AI and HC. In the process of expert selection, we ensured that interviewees possessed a minimum of two years of experience in their respective fields. We aimed for a well-balanced mix of diverse professions and positions among the interviewees. Additionally, for those with a primary background in HC, we specifically verified their proficiency and understanding of AI, ensuring a comprehensive perspective across the entire expert panel. Table 2 provides an overview of our expert sample. The interviewees were recruited in the authors’ networks and by cold calling. Identified experts were first contacted by email, including some brief information regarding the study. If there was no response within two weeks, they were contacted again by telephone to arrange an interview date. In total, we conducted 11 interviews that took place in a time range between 40 and 75 min. The expert interviews are transcribed verbatim using the software f4. As a coding aid, we use the software MAXQDA—a tool for qualitative data analysis which is frequently used in the analyses of qualitative data in the HC domain (e.g., [ 38 , 71 , 72 ]).

To systematically decompose how HC organizations can realize value propositions from AI applications, we identified 15 business objectives and six value propositions (see Fig.  2 ). These business objectives and value propositions resulted from analyzing the collected data, which we derived from the literature and refined through expert interviews. In the following, we describe the six value propositions and elaborate on how the specific AI business objectives can result in value propositions. This will be followed by a discussion of the results in the discussion of the paper.

Business objectives and value propositions risk-reduced patient care

This value proposition follows business objectives that may identify and reduce threats and adverse factors during medical procedures. HC belongs to a high-risk domain since there are uncertain external factors (E4), including physicians’ fatigue, distractions, or cognitive biases [ 73 , 74 ]. AI applications can reduce certain risks by enabling precise decision support, detecting misconduct, reducing emergent side effects, and reducing invasiveness.

Precise decision support stems from AI applications’ capability to integrate various data types into the decision-making process, gaining a sophisticated overview of a phenomenon. Precise knowledge about all uncertainty factors reduces the ambiguity of decision-making processes [ 49 ]. E5 confirms that AI applications can be seen as a “perceptual enhancement”, enabling more comprehensive and context-based decision support. Humans are naturally prone to innate and socially adapted biases that also affect HC professionals [ 14 ]. Use Case CA1 highlights how rapid decision-making by HC professionals during emergency triage may lead to overlooking subtle yet crucial signs. AI applications can offer decision support based on historical data, enhancing objectivity and accuracy [ 56 ].

Detection of misconduct is possible since AI applications can map and monitor clinical workflows and recognize irregularities early. In this context, E10 highlights that “one of the best examples is the interception of abnormalities.” For instance, AI applications can assist in allocating medications in hospitals (Use case T2). Since HC professionals can be tired or distracted in medication preparation, AI applications may avoid serious consequences for patients by monitoring allocation processes and patients’ reactions. Thus, AI applications can reduce abuse and increase safety.

Reduction of emergent side effects is enabled by AI applications that continuously monitor and process data. If different treatments and medications are combined during a patient’s clinical pathway, it may cause overdosage or evoke co-effects and comorbidities, causing danger for the patient [ 75 ]. AI applications can prevent these by detecting and predicting these effects. For instance, AI applications can calculate the medication dosage for the individual and predict contraindications (Use case T2) [ 76 ]. E3 adds that the reduction of side effects also includes “cross-impacts between medications or possible symptoms that only occur for patients of a certain age or disease.” Avoidable side effects can thus be detected at an early stage, resulting in better outcomes.

Reduction of invasiveness of medical treatments or surgeries is possible by allowing AI applications to compensate for and overcome human weaknesses and limitations. During surgery, AI applications can continuously monitor a robot’s position and accurately predict its trajectories [ 77 ]. Intelligent robots can eliminate human tremors and access hard-to-reach body parts [ 60 ]. E2 validates, “a robot does not tremble; a robot moves in a perfectly straight line.” The precise AI-controlled movement of surgical robots minimizes the risk of injuring nearby vessels and organs [ 61 ]. Use cases DD5 and DD7 elucidate how AI applications enable new methods to perform noninvasive diagnoses. Reducing invasiveness has a major impact on the patient’s recovery, safety, and outcome quality.

Advanced patient care

Advanced patient care follows business objectives that extend patient care to increase the quality of care. One of HC’s primary goals is to provide the most effective treatment outcome. AI applications can advance patient care as they enable personalized care and accurate prognosis.

Personalized care can be enabled by the ability of AI technologies to integrate and process individual structured and unstructured patient data to increase the compatibility of patient and health interventions. For instance, by analyzing genome mutations, AI applications precisely assess cancer, enabling personalized therapy and increasing the likelihood of enhancing outcome quality (Use case DD4). E11 sums up that “we can improve treatment or even make it more specific for the patient. This is, of course, the dream of healthcare”. Use case T1 exemplifies how the integration of AI applications facilitates personalized products, such as an artificial pancreas. The pancreas predicts glucose levels in real time and adapts insulin supplementation. Personalized care allows good care to be made even better by tailoring care to the individual.

Accurate prognosis is achieved by AI applications that track, combine, and analyze HC data and historical data to make accurate predictions. For instance, AI applications can precisely analyze tumor tissue to improve the stratification of cancer patients. Based on this result, the selection of adjuvant therapy can be refined, improving the effectiveness of care [ 48 ]. Use case DD6 shows how AI applications can predict seizure onset zones to enhance the prognosis of epileptic seizures. In this context, E10 adds that an accurate prognosis fosters early and preventive care.

Self-management

Self-management follows the business objectives that increase disease controllability through the support of intelligent medical products. AI applications can foster self-management by self-monitoring and providing a new way of delivering information.

Self-monitoring is enhanced by AI applications, which can automatically process frequently measured data. There are AI-based chatbots, mobile applications, wearables, and other medical products that gather periodic data and are used by people to monitor themselves in the health context (e.g., [ 78 , 79 ]. Frequent data collection of these products (e.g., using sensors) enables AI applications to analyze periodic data and become aware of abnormalities. While the amount of data rises, the applications can improve their performance continuously (E2). Through continuous tracking of heartbeats via wearables, AI applications can precisely detect irregularities, notify their users in the case of irregularities, empower quicker treatment (E2), and may reduce hospital visits (E9). Self-monitoring enhances patient safety and allows the patient to be more physician-independent and involved in their HC.

Information delivery to the patient is enabled by AI applications that give medical advice adjusted to the patient’s needs. Often, patients lack profound knowledge about their anomalies. AI applications can contextualize patients’ symptoms to provide anamnesis support and deliver interactive advice [ 59 ]. While HC professionals must focus on one diagnostic pathway, AI applications can process information to investigate different diagnostic branches simultaneously (E5). Thus, these applications can deliver high-quality information based on the patient’s feedback, for instance, when using an intelligent conversational agent (use case T3). E4 highlights that this can improve doctoral consultations because “the patient is already informed and already has information when he comes to talk to doctors”.

Process acceleration

Process acceleration comprises business objectives that enable speed and low latencies. Speed describes how fast one can perform a task, while latency specifies how much time elapses from an event until a task is executed. AI applications can accelerate processes by rapid task execution and reducing latency.

Rapid task execution can be achieved by the ability of AI applications to process large amounts of data and identify patterns in a short time. In this context, E4 mentions that AI applications can drill diagnosis down to seconds. For instance, whereas doctors need several minutes for profound image-based detection, AI applications have a much faster report turnaround time (use case DD1). Besides, rapid data processing also opens up new opportunities in drug development. AI applications can rapidly browse through molecule libraries to detect nearly 10^60 molecules, which are synthetically available (use case BR1). This immense speed during a discovery process has an essential influence on the business potential and can enormously decrease research costs (E10).

Latency reduction can be enabled by AI technologies monitoring and dynamically processing information and environmental factors. By continuously evaluating vital signs and electrocardiogram records, AI applications can predict the in-house mortality of patients in real time [ 57 ]. The AI application can detect an increased mortality risk faster than HC professionals, enabling a more rapid emergency intervention. In this case, AI applications decrease the time delay between the cause and the reaction, which positively impacts patient care. E7 emphasizes the importance of short latencies: “One of the most important things is that the timeframe between the point when all the data is available, and a decision has been made, […] must be kept short.”

Resource optimization

Resource optimization follows the business objectives that manage limited resources and capacities. The HC industry faces a lack of sufficient resources, especially through a shortage of specialists (E8), which in turn negatively influences waiting times. AI applications can support efficient resource allocation by optimizing device utilization, organizational capacities and unleashing personnel capabilities.

Optimized device utilization can be enhanced by AI applications that track, analyze, and precisely predict load of times of medical equipment in real-time. For instance, AI applications can maximize X-Ray or magnetic resonance tomography device utilization (use case CA3). Besides, AI applications can enable a dynamic replanning of device utilization by including absence or waiting times and predicting interruptions. Intelligent resource optimization may include various key variables (e.g., the maximized lifespan of a radiation scanner) [ 48 ]. Optimized device utilization reduces the time periods when the device is not utilized, and thus, losses are made.

Optimized organizational capacities are possible due to AI applications breaking up static key performance indicators and finding more dynamic measuring approaches for the required workflow changes (E5, E10). The utilization of capacities in hospitals relies on various known and unknown parameters, which are often interdependent [ 80 ]. AI applications can detect and optimize these dependencies to manage capacity. An example is the optimization of clinical occupancy in the hospital (use case CA3), which has a strong impact on cost. E5 adds that the integration of AI applications may increase the reliability of planning HC resources since they can predict capacity trends from historical occupancy rates. Optimized planning of capacities can prevent capacities from remaining unused and fixed costs from being offset by no revenue.

Unleashing personnel capabilities is enabled by AI applications performing analytical and administrative tasks, relieving caregivers’ workload (E8, E10, E11). E7 validates that “our conviction is […] that administrational tasks generate the greatest added value and benefit for doctors and caregivers.” Administrative tasks include the creation of case summaries (use case CA4) or automated de-identification of private health information in electronic health records (use case BR2) [ 54 ]. E8 says that resource optimization enables “more time for direct contact with patients.”

Knowledge discovery

Knowledge discovery follows the business objectives that increase perception and access to novel and previously unrevealed information. AI applications might synthesize and contextualize medical knowledge to create uniform or equalized semantics of information (E5, E11). This semantics enables a translation of knowledge for specific users.

Detection of similarities is enabled by AI applications identifying entities with similar features. AI applications can screen complex and nonlinear databases to identify reoccurring patterns without any a priori understanding of the data (E3). These similarities generate valuable knowledge, which can be applied to enhance scientific research processes such as drug development (use case BR1). In drug development, AI applications can facilitate ligand-based screening to detect new active molecules based on similarities compared with already existing molecular properties. This increases the effectiveness of drug design and reduces risks in clinical trials [ 6 ].

Exploration of new correlations is facilitated by AI applications identifying relationships in data. In diagnostics, AI applications can analyze facial photographs to accurately identify genotype–phenotype correlations and, thus, increase the detection rate of rare diseases (use case DD7). E8 states the potential of AI applications in the field of knowledge discovery: “Well, if you are researching in any medical area, then everybody aims to understand and describe phenomena because science always demands a certain causation.” However, it is crucial to develop transparent and intelligible inferences that are comprehensible for HC professionals and researchers. Exploring new correlations improves diagnoses of rare diseases and ensures earlier treatment.

After describing each business objective and value proposition, we summarize the AI use cases’ contributions to the value propositions in Table  3 .

By revealing 15 business objectives that translate into six value propositions, we contribute to the academic discourse on the value creation of AI (e.g. [ 81 ] and provide prescriptive knowledge on AI applications' value propositions in the HC domain. Our discourse also emphasizes that our findings are not only relevant to the field of value creation research but can also be helpful for adoption research. The value propositions we have identified can be a good starting point to accelerate the adoption of AI in HC, as the understanding of potential value propositions that we foster could mitigate some of the current obstacles to the adoption of AI applications in HC. For example, our findings may help to mitigate the obstacle “added value”, which is presented in the study by Hennrich et al.38 [ 38 ] as users’ concerns that AI might create more burden than benefits.

Further, we deliver valuable implications for practice and provide a comprehensive picture of how organizations in the context of HC can achieve business value with AI applications from a managerial level, which has been missing until now. We guide HC organizations in evaluating their AI applications or those of the competition to assess AI investment decisions and align their AI application portfolio toward an overarching strategy. These results will foster the adoption of AI applications as HC organizations can now understand how they can unfold AI applications’ capabilities into business value. In case a hospital’s major strategy is to reduce patient risks due to limited personal capacities, it might be beneficial for them to invest in AI applications that reduce side effects by calculating medication dosages (use case T2). If an HC organization currently faces issues with overcrowded emergency rooms, the HC organization might acquire AI applications that increase information delivery and help patients decide if and when they should visit the hospital (use case T3) to increase patients’ self-management and, in turn, improve triage. Besides, our findings also offer valuable insights for AI developers. Addressing issues such as transparency and the alignment of AI applications with the needs of HC professionals is crucial. Adapting AI solutions to the specific requirements of the HC sector ensures responsible integration and thus the realization of the expected values.

A closer look at the current challenges in the HC sector reveals that new solutions to mitigate them and improve value creation are needed. Given that a nurse, for example, dedicates a substantial 25% of their working hours to administrative tasks [ 17 ], the rationale behind the respondents’ (E7) recognition of “the greatest added value” in utilizing AI applications for administrative purposes becomes evident. The potential of AI applications in streamlining administrative tasks lies in creating additional time for meaningful patient interactions. Acknowledging the significant impact of the doctor-patient interpersonal relationship on both the patient’s well-being and the processes of diagnosis and healing, as elucidated by Buck et al. [ 82 ] in their interview study, the physicians interviewed emphasized that the mere presence of the doctor in the same room often alleviates the patient’s problems. Consequently, it becomes apparent that the intangible value of AI applications plays a crucial role in the context of HC and is an important factor in the investment decision as to where an AI application should be deployed.

The interviews also indicate that the special context of the HC sector leads to concerns regarding the use of AI applications. For example, one interviewee emphasized a fundamental characteristic of medical staff by pointing out that physicians have a natural desire to understand all phenomena (E8). AI applications, however, are currently struggling with the challenge of transparency. This challenge is described by the so-called black box problem, a phenomenon that makes it impossible to decipher the underlying algorithms that lead to a particular recommendation [ 37 ]. The lack of transparency and the resulting lack of intervention options for medical staff can lead to incorrect decisions by the AI application, which may cause considerable damage. Aware of these risks, physicians are currently struggling with trust issues in AI applications [ 72 ]. The numerous opportunities for value creation through AI applications in HC are offset by the significant risk of causing considerable harm to patients if the technology is not yet fully mature. Ultimately, it remains essential to keep in mind that there are many ethical questions to be answered [ 83 ], and AI applications are still facing many obstacles [ 38 ] that must be overcome in order to realize the expected values and avoid serious harm. One important first step in mitigating the obstacles is disseminating the concerns and risks to relevant stakeholders, emphasizing the urgency for collaborative scientific and public monitoring efforts [ 84 ]. However, keeping these obstacles in mind, by providing prescriptive knowledge, we enhance the understanding of AI’s value creation paths in the HC industry and thus help to drive AI integration forward. For example, looking at the value proposition risk reduced patient care , we demonstrate that this value proposition is determined by four business objectives: precise decision support , detection of misconduct, reduction of side effects, and reduction of invasiveness . Similarly, the AI application’s capability to analyze data more accurately in diagnosis (use case DD1) enables the business objective precise decision support , thereby reducing risks in patient care. Another mechanism can be seen, for example, considering the business objective task execution , which leads to the value proposition process acceleration . The ability of AI applications to rapidly analyze large amounts of data and recognize patterns in biomedical research (use case BR1) allows a faster drug development process.

Further research

By investigating the value creation mechanism of AI applications for HC organizations, we not only make an important contribution to research and practice but also create a valuable foundation for future studies. While we have systematically identified the relations between the business objectives and value propositions, further research is needed to investigate how the business objectives themselves are determined. While the examination of AI capabilities was not the primary research focus, we found first evidence in the use cases that indicates AI technology’s unique capabilities (e.g., to make diagnoses accurate, faster, and more objective) that foster one or several business objectives (e.g., rapid task execution, precise decision support) and unlock one or several value propositions (e.g., Risk-reduced patient care, process acceleration ). In subsequent research, we aim to integrate these into the value creation mechanism by identifying which specific AI capabilities drive business objectives, thereby advancing the understanding of how AI applications in HC create value propositions.

Limitations

This study is subject to certain limitations of methodological and conceptual nature. First, while our methodological approach covers an in-depth analysis of 21 AI use cases, extending the sample of AI use cases would foster the generalizability of the results. This is especially important regarding the latest developments on generative AI and its newcoming use cases. However, our results demonstrate that these AI use cases already provide rich information to derive 15 business objectives, which translate into six value propositions. Second, while many papers assume the potential of AI applications to create value propositions, only a few papers explicitly focus on the value creation and capture mechanisms. To compensate for this paucity of appropriate papers, we used 11 expert interviews to enrich and evaluate the results. Besides, these interviews ensured the practical relevance and reliability of the derived results. Third, we acknowledge limitations of conceptual nature. Our study predominantly takes an optimistic perspective on AI applications in medicine. While we discuss the potential benefits and value propositions in detail, it is important to emphasize that there are still significant barriers and risks currently associated with AI applications that need to be addressed before the identified values can be realized. Furthermore, our investigation is limited because we derive the expected value of AI applications without having extensive real-world use cases to evaluate. It is important to emphasize that our findings are preliminary, and critical reassessment will be essential as the broader implementation of AI applications in medical practice progresses. These limitations emphasize the need for ongoing research and monitoring to understand the true value of AI applications in HC fully.

Conclusions

This study aimed to investigate how AI applications can create value for HC organizations. After elaborating on a diverse and comprehensive set of AI use cases, we are confident that AI applications can create value by making HC, among others, more precise, individualized, self-determined, faster, resource-optimized, and data insight-driven. Especially with regard to the mounting challenges of the industry, such as the aging population and the resulting increase in HC professionals’ workloads, the integration of AI applications and the expected benefits have become more critical than ever. Based on the systematic literature review and expert interviews, we derived 15 business objectives that translate into the following six value propositions that describe how HC organizations can capture the value of AI applications: risk-reduced patient care, advanced patient care, self-management, process acceleration, resource optimization, and knowledge discovery .

By presenting and discussing our results, we enhance the understanding of how HC organizations can unlock AI applications’ value proposition. We provide HC organizations with valuable insights to help them strategically assess their AI applications as well as those deployed by competitors at a management level. Our goal is to facilitate informed decision-making regarding AI investments and enable HC organizations to align their AI application portfolios with a comprehensive and overarching strategy. However, even if various value proposition-creating scenarios exist, AI applications are not yet fully mature in every area or ready for widespread use. Ultimately, it remains essential to take a critical look at which AI applications can be used for which task at which point in time to achieve the promised value. Nonetheless, we are confident that we can shed more light on the value proposition-capturing mechanism and, therefore, support AI application adoption in HC.

Availability of data and materials

The datasets analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Artificial Intelligence

Machine Learning

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Hennrich, J., Ritz, E., Hofmann, P. et al. Capturing artificial intelligence applications’ value proposition in healthcare – a qualitative research study. BMC Health Serv Res 24 , 420 (2024). https://doi.org/10.1186/s12913-024-10894-4

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Midwives’ lived experiences of caring for women with mobility disabilities during pregnancy, labour and puerperium in Eswatini: a qualitative study

• Annie M. Temane 1 ,
• Fortunate N. Magagula 2 &
• Anna G. W. Nolte 1  

BMC Women's Health volume  24 , Article number:  207 ( 2024 ) Cite this article

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Metrics details

Midwives encounter various difficulties while aiming to achieve excellence in providing maternity care to women with mobility disabilities. The study aimed to explore and describe midwives’ experiences of caring for women with mobility disabilities during pregnancy, labour and puerperium in Eswatini.

A qualitative, exploratory, descriptive, contextual research design with a phenomenological approach was followed. Twelve midwives working in maternal health facilities in the Hhohho and Manzini regions in Eswatini were interviewed. Purposive sampling was used to select midwives to participate in the research. In-depth phenomenological interviews were conducted, and Giorgi’s descriptive phenomenological method was used for data analysis.

Three themes emerged from the data analysis: midwives experienced physical and emotional strain in providing maternity care to women with mobility disabilities, they experienced frustration due to the lack of equipment to meet the needs of women with mobility disabilities, and they faced challenges in providing support and holistic care to women with mobility disabilities during pregnancy, labour and puerperium.

Conclusions

Midwives experienced challenges caring for women with mobility disabilities during pregnancy, labour and the puerperium in Eswatini. There is a need to develop and empower midwives with the knowledge and skill to implement guidelines and enact protocols. Moreover, equipment and infrastructure are required to facilitate support and holistic maternity care for women with mobility disabilities.

Peer Review reports

Globally, few studies have focused on midwives’ views of providing maternity care to women with mobility disabilities during pregnancy, labour and the puerperium [ 1 ]. In The Disabled World [ 2 ], the World Health Organisation (WHO) defines ‘disability’ as an umbrella term covering impairments, activity limitations, and participation restrictions. Furthermore, the WHO defines an ‘impairment’ as a problem in bodily function or structure; an ‘activity limitation’ as a difficulty encountered by an individual in executing a task or action; and ‘participation restriction’ as a problem experienced by an individual in various life situations [ 2 ]. In this study, mobility disabilities refer to an impairment in the functioning of the upper and lower extremities as experienced by women during pregnancy, labour and the puerperium.

Midwives, as frontline workers in the delivery of maternity care [ 3 ] responsible for the lives of the mother and the baby, are accountable for providing competent and holistic care for women during pregnancy, labour and puerperium. As part of healthcare provision, midwives play an important role in ensuring that every woman, including women with mobility disabilities, receives the best maternity care during pregnancy, labour and puerperium. Moridi et al. [ 4 ] state that women with mobility disabilities are entitled to feel safe, respected and well cared for by midwives, who must be sufficiently prepared to care for these women.

According to the Global Population Report, [ 5 ] more than one billion people have some form of disability. Eswatini is classified as a middle-income setting in the southern African region, measuring 17 000 square kilometres with a population of 1 093 238. Of the population, 76.2% reside in rural areas (833 472), and 23.8% (259 766) reside in urban areas [ 6 ]. The economy is largely agricultural as most industries manufacture agricultural products [ 7 ]. Of the Eswatini population, 146 554 (13%) live with disabilities, with most being women (87 258; 16%), 22,871 (14.1%) and 26,270 (14.3%) of them reside in the Hhohho and Manzini regions respectively [ 8 ]. 15% (125 545) of people with disabilities live in rural areas, and 85% of the disabled population is unemployed [ 8 ], which means most of these individuals are economically disadvantaged. Furthermore, according to the Eswatini Central Statistics Office, 8 26.5% of people with disabilities have a mobility (walking) disability, with 63.5% of these being women.

Midwives may encounter difficulties while aiming to achieve excellence in providing maternity care to women with mobility disabilities in what may be challenging circumstances [ 9 ]. The WHO [ 10 ] claims people with disabilities do not receive the health services they need and are thus likely to find healthcare providers have inadequate skills. Lawler et al. [ 11 ] argue that ineffective interactions and poor communication with women needing care, particularly among health professionals engaged in providing maternity services, limit these women’s opportunities to participate in decision-making processes during pregnancy, childbirth, and postpartum care. According to the University of Johannesburg, [ 12 ] the midwife, together with the mother, have to engage collaboratively in order to come up with opportunities to promote health while removing any challenges that could impede the achievement thereof.

Walsh-Gallagher et al. [ 13 ] postulate that healthcare professionals tend to view women with disabilities as liabilities and regard them as high risk; they often exclude them from the individualised plan of care, which leads to an increase in these women’s fears about their maternity care. These challenges frequently result in health disparities and prevent women with mobility disabilities from receiving optimal maternity care. By exploring midwives’ experiences of this phenomenon, guidelines for support can be developed to extend available knowledge on maternity care for women with mobility disabilities during pregnancy, labour and puerperium.

Study design

The aim of the study was to explore and describe midwives’ experiences of caring for women with mobility disabilities during pregnancy, labour and puerperium in the Hhohho and Manzini regions of Eswatini. A qualitative, [ 14 ] exploratory, [ 15 ] descriptive, [ 16 ] contextual [ 17 ] research design with a phenomenological approach [ 18 ] was applied for this study to gain insight and understanding of the research phenomenon [ 19 ]. The phenomenon under study was midwives’ lived experiences caring for women with mobility disabilities during pregnancy, labour and puerperium. The participants were approached face-to-face to participate in the study. The researchers followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) to report on this qualitative study [ 20 ].

The setting for the study was the Hhohho and Manzini regions of Eswatini. The researcher collected data at the site where participants experienced the phenomenon, as emphasised by Yildiz, [ 21 ] within the context in which they were comfortable to be interviewed [ 22 ]. This setting included maternal health facilities in hospitals and public health units.

Population and sampling

The study’s population comprised midwives working in maternal health facilities in hospitals and public health units, that is, one referral hospital and one public health unit in the Hhohho region and two referral hospitals and one public health unit in the Manzini region of Eswatini. Purposive sampling was used to select midwives to participate in the study; [ 16 ] 12 midwives from both regions were included. The midwives were between the ages of 35 and 55, and all midwives were black in race and identified as females. The years of experience in the field ranged between 5 and 15 years. The criteria for inclusion were midwives who had provided maternity care to women with mobility disabilities during pregnancy, labour and puerperium for a period of not more than two to three years, willing to participate in the study. The sample size was determined by repetitions of key statements about the research phenomenon during data collection, termed data saturation [ 23 ]. None of the participants refused to participate in the study.

Table  1 summarises the participants’ demographic characteristics.

Data collection

In-depth phenomenological, face-to-face, individual interviews were conducted to collect data [ 17 ]. The researcher who was a Midwifery lecturer held a Master’s Degree in Maternal and Neonatal science at the time of the study requested approval from the Unit manager to seek permission from the midwives to take part in the study. The midwives were given an information letter which included objectives of the study and the reasons for conducting the study. After recruiting midwives and obtaining their written consent to participate in the study and permission to audio-record the interviews, the researcher set up appointments with them for the interviews, and the data collection process commenced. The central question posed to participants was: How was it for you to care for a woman with a mobility disability during pregnancy, labour and puerperium? A pilot of the tool was performed on the first participant who met the inclusion criteria and possessed the same characteristics as those of the study sample. The pre-testing question yielded positive results, the participant responded to the question asked and there was no need to rephrase it or further test it.

The interviews were conducted from March 2019 to July 2019 and lasted 30–45 min. The researcher conducted interviews until the data became redundant and repetitive, reflecting that saturation had been reached, in congruence with Fouché et al. [ 25 ] In addition, field notes were recorded in a notebook after each in-depth phenomenological interview. No repeat interviews were held. The researcher ensured bracketing by omitting any perceptions from her past experiences that were likely to influence her interpretation of the research findings.

Data analysis

Before data analysis commenced, data were organised in computer files after being transcribed and translated into narrative form. Data from each participant were coded and stored in the relevant file and kept in a safe place; only the researcher could access the information. Back-up copies were made of all the data, and the master copies were stored in a safe to which only the researcher had access.

Data collection and analysis occurred concurrently. The researcher was guided by Giorgi et al.’s [ 26 ] five-step method of data analysis. This entailed the researcher reading all the transcribed data and the entire ‘naïve description’ provided by the participants during the interviews. The demarcation of ‘meaning units’ within narratives followed. In addition, the researcher marked where meaning shifts occurred and transformed meaning units into descriptive expressions. The researcher laid out the general structure of midwives’ experiences. Moreover, an independent coder was provided with the raw data (after signing a confidentiality agreement) to analyse the findings. The researcher and independent coder analysed the data separately and met for a consensus discussion. Both agreed on all the units of analysis, with an inter-coder reliability of 100%.

Measures of trustworthiness

The research was informed by Guba and Lincoln’s [ 27 ] model in relation to credibility, transferability, dependability and confirmability. For credibility, the researcher ensured prolonged engagement in the field [ 28 ], peer debriefing, [ 29 ] member checking, and an external auditor was used [ 25 ]. The study was also presented at a national conference. Transferability refers to the ability to extend the findings of one’s study to comparable environments or participants, as stated by Pitney et al. [ 30 ] The researcher ensured the study’s transferability by providing a richly documented account and in-depth description of all aspects and processes of the study protocol. Data saturation also confirmed transferability [ 23 ]. Dependability is evident in a study when other researchers are able to follow the researcher’s decision trail [ 31 ]. The researcher ensured dependability by densely describing the research process in congruence with Fouché et al.’s [ 25 ] guidelines, so that other researchers can follow similar steps of the same research methodology. Confirmability occurs when the research is judged by the way in which the findings and conclusions achieve their aim and are not the result of the researcher’s prior assumptions and preconceptions [ 32 ]. The researcher ensured this by remaining true to the research process through reflexivity and not compromising the research process in any way [ 28 ]. In addition, the researcher engaged an independent coder and provided a chain of evidence of the entire research process to enable an audit. Therefore, all forms of collected data, including raw data, reflexive journals, [ 29 ] notes and transcriptions, were recorded.

Ethical clearance to conduct this study was obtained from the University of Johannesburg Faculty of Health Sciences Higher Degrees Committee (ref. no. HDC-01-50-2018), University of Johannesburg Faculty of Health Research Ethics Committee (ref. no. REC-01-82-2018), and the Eswatini National Health Research Review Board (ref. no. NHRRB982/2018). The researcher applied and adhered to the four principles to be considered when conducting research: autonomy, beneficence, non-maleficence and justice [ 33 ]. Autonomy was adhered to by affording the participants the right to choose to participate in the study and by signing a written informed consent form a week after it was given to them before the interviews commenced. Beneficence was ensured through doing good and doing no harm to participants by prioritising the participants’ interests above those of the researcher, and did not engage in any practice that jeopardised their rights. Non-maleficence was observed by eradicating any possible harmful risks in the study; the researcher ensured the safety of the participants by conducting interviews in a familiar, private environment where they felt free and safe from harm. Furthermore, justice was observed by treating all participants equally regardless of their biographical, social and economic status.

Three themes and categories emerged from the data analysis. Table  2 summarises the themes and categories of midwives’ lived experiences caring for women with mobility disabilities during pregnancy, labour and puerperium in Eswatini.

Theme 1: physical and emotional efforts required from midwives to provide maternity care to women with mobility disabilities

Category 1.1: midwives experienced that woman with mobility disabilities needed assistance getting onto the bed during labour and delivery.

According to the participants, caring for women with mobility disabilities weighed heavily on them physically as they were required to assist the women onto delivery beds, which were too high for the women to climb up on their own:

“The beds are too high, they need to be adjustable…unless you change her to another room, we only have one in the other room…but to be honest she delivered on the same high bed with the help…It’s uncomfortable even with me who is normal, how about someone who has a disability? Getting the woman onto the bed is also uncomfortable for us we end up having pain on our backs.” (M3) . “The challenge is that I couldn’t help her to climb on to the bed, because I needed someone to assist when she came for postnatal care as she was even carrying 3 babies, I didn’t know what to do…I eventually went out and asked for assistance from my colleague…” (M10) . “I believe that the equipment should accommodate the women with disability, however, ours is not accommodative to the women…there are no special delivery beds, specifically designed for them because in my opinion the beds have to be shorter so they can be able to get on to them easily…yes so that they can be able to climb on the beds” (M1) .

Category 1.2: midwives experienced challenges in manoeuvring women with mobility disabilities during labour

Midwives reported it was difficult to perform some procedures while progressing these women during labour and delivery. This situation called for some adjustment and improvisation on their part, and they were unsure if it was the right thing to do.

“Even though she was a bit uncomfortable and anxious because the leg was just straight and could not bend, I reassured her…She had to remove the artificial leg and remain with the stump. I placed her on the lithotomy position. With the other hand she had to hold on to the ankle of the normal foot, even though it was awkward and difficult to manoeuvre, she managed to deliver the baby.” (M1) . “Luckily for us, she didn’t sustain a tear and we were saved from suturing her cause we foresaw difficulties as how we could have done it as she couldn’t open her thighs well due to the disability…yes I had to get a partner to assist, since she couldn’t even open her thighs. She also couldn’t cooperate possibly because of the pain that is also more reason I asked for my colleague to assist.” (M6) . “…yes…let me make an example, in my case she had a fracture, even if the pelvis was gynaecoid, there were problems of finding the right position for her during delivery, when she had to push the baby out…” (M8) . “The one that I saw did not have one leg. She had come for her postnatal care. We assisted and her on the couch, with my colleague. Since she couldn’t keep her legs open, I asked my colleague to keep one of her legs open whilst I examined her.” (M12) .

Category 1.3: midwives experienced anxiety and the need to exercise patience when caring for women with mobility disabilities

The participants experienced an emotional and psychological burden when caring for women with mobility disabilities. They felt unqualified and foresaw difficulties that triggered anxiety, which led to them not knowing what to do and how to handle these women.

“It was during labour…the woman was limping the woman she was on crutches. The moment she came into the ward I am a human being I just felt sorry for her kutsi (as to) how is she going to take care of the baby, and the hand was somehow deformed.” (M3) . “At first its emotionally draining as an individual you cause you start sympathising…(other midwife chips in)…yes you even find yourself saying things just because you pity her, and in the process they get hurt.” (M6) . “It came as a shock and it was my first experience, it came as a shock as to how I was going to help her as even my experience was limited in that area.” (M7) . “As I was taking care of her it became necessary for me to put myself into her shoes and to bear with her considering her situation….When you see her for the first time you would pity her yet she is now used to it.” (M1) .

Theme 2: lack of equipment to meet the needs of women with mobility disabilities

Category 2.1: midwives reported a lack of special beds and infrastructure to meet the needs of women with mobility disabilities.

Midwives reported their frustration at the lack of sufficient equipment like special beds and examination tables, tailored for women with mobility disabilities. It was a challenge to provide maternity care for women without this equipment.

“I believe that the infrastructure and equipment should accommodate the women with mobility disability, however, ours is not accommodative to the women…Usually we don’t have the prenatal ward in the maternity, most women who come in the latent phase have to ambulate, or go to the waiting huts and come back when the labour pains are stronger…There are no special delivery beds, specifically designed for them because in my opinion the beds have to be shorter so they can be able to get on to them easily. We do not even have toilets meant for them.” (M1) . “I was anxious as to how was she going to push how to push cause we do not have the right beds when it was time for pushing I asked for assistance…” (M2) . “The challenge is that I couldn’t help her to climb on to the bed, because I needed someone to assist when she came for postnatal care…the beds need to be adjustable so that they are able to be pushed lower for the mother to move from wheel chair to the bed and we pull the bed up again to examine her.” (M11) .

Theme 3: challenges in providing holistic care to women with mobility disabilities during pregnancy, labour, and puerperium

Category 3.1: midwives reported a lack of guidelines and protocols in caring holistically for women with mobility disabilities.

Midwives emphasised a lack of guidelines, protocols and knowledge about caring holistically for women with mobility disabilities. This resulted in everyone making their own decisions and doing as they saw fit in caring for these women:

“I think during antenatal care they (the women with mobility disabilities) need to be prepared for labour cause for others the pain is extraordinary, apart from the pain threshold, they also face self-esteem issues, they are looked down upon…I only saw that she was disabled during assessment cause nothing was recorded on the antenatal care card.” (M2) . “I was not aware of the disability at first, I only discovered when she was pushing…she was admitted and progressed by another midwife, I only attended to her when she was pushing… there was nothing written on the nurse’s notes/ handover notes about her disability.” (M5) . “There is no normal practice for a woman with mobility disability when they come and they are in labour, I usually admit regardless of the stage of labour or dilatation…It is not a protocol, it’s a midwife’s prerogative.” (M1) . “We assess and come up with our own discretion even in terms of admitting them (women with mobility disability). Some midwives will admit them regardless of the stage of labour and disregard the protocol that women who come into labour have to ambulate if they are in the latent phase.” (M8) . “There is one that came the past 3 days she has 3 children now and we just scheduled her for c/section because we know that she has been having c/section since she started. Just from looking at the way she walked, we could tell that she couldn’t deliver normally.” (M9) .

Category 3.2: midwives experienced challenges in allowing significant others to support women with mobility disabilities during labour and delivery

Consequent to the challenges in providing holistic care to women with mobility disabilities, midwives experienced challenges in allowing significant others to support these women during labour and delivery.

“It can depend on the patients themselves, they should decide and we need to be flexible for it to happen…as you can see our labour room also has the issue of privacy…we would need to restructure cause we have beds for 5 or more women in labour room…and then bringing someone from outside could be tricky” (M6) . “Maybe…not sure though, that they can bring their relatives, but maybe, considering staffing limitation…also the issue of discrimination and privacy, they (the women with disabilities) might feel we discriminate against them because they are disabled we now treat them differently.” (M7) . “Maybe if she can (bring her relative) but that’s not necessary, because I can always ask my colleague to assist, unless there is no one…” (M12) .

Childbirth is a special experience that requires a personal connection between the midwife and the woman giving birth, characterised by successful communication and respect [ 34 ]. However, the themes identified in the study indicated that midwives experienced challenges caring for women with mobility disabilities during pregnancy, labour and puerperium based on their limited capacity and preparedness, and lack of protocols to care for these women. They also reported a lack of supportive equipment for women with mobility disabilities. This posed a challenge for them in attending to these women’s specific needs, and they did not always know how to handle the situation appropriately.

One of the themes centred on midwives’ experiences of the physical and emotional efforts required of them to provide maternity care to women with mobility disabilities. They explained women with mobility disabilities required assistance getting onto the bed during labour and delivery, and more manoeuvring was expected of them (as midwives) as they had to adjust their performance and some procedures. The midwives also reported challenges in providing holistic care to women with mobility disabilities during pregnancy, labour and puerperium. Konig-Bachmann et al. [ 35 ] reiterate that caring for women with disabilities requires a level of flexibility, adaptation beyond routine procedures, and demands a high degree of improvisation from healthcare providers to ensure high-quality care. Morrison et al. [ 36 ] also found that healthcare providers reported difficulties with equipment when providing healthcare for women with physical disabilities; particularly the beds being too high for them to access. Smeltzer et al. [ 37 ] similarly allude to the importance of educating and training clinicians to equip them with knowledge and technical skills to provide more effective care to women with physical disabilities.

The midwives also shared that labour and deliveries were further complicated by some women with mobility disabilities not being able to cooperate due to the pain they experienced; others could not change position due to their disability. In a study by Sonalkar et al., [ 38 ] healthcare providers described the gynaecologic examination as challenging to complete as it required patience and the ability to be adaptable to different methods and positioning. Similarly, Konig-Bachmann et al. [ 35 ] indicate that in order to provide high-quality care for women with disabilities, healthcare providers need to exercise strong flexibility, adapt beyond routine procedures, and engage in a high degree of improvisation. Byrnes and Hickey [ 39 ] concur with this study’s findings and state that due to mobility restrictions, it may be difficult to assess the fundal height and foetal growth in women with physical disabilities.

Some midwives reported their caregiving role was emotionally draining as they felt sorry and pitied the women with mobility disabilities; thus, they needed to show compassion and reassure them. According to Mgwili et al., [ 40 ] psychoanalytic thinkers associate pity among staff members upon first contact with a physically disabled person as being instigated by personal feelings, stimulated by the disability. The midwives in this study stated they needed to be more patient and adjust their approach to caring for these women. Tarasoff [ 41 ] and Schildberger et al. [ 42 ] reiterated that healthcare providers seemed uncomfortable with women’s disability, consequently failing to offer needed support. According to Sonalkar et al., [ 38 ] healthcare providers reported there would be less fear and concern about hurting women with disabilities if midwives had increased training. Similarly, Mitra et al. [ 43 ] mentioned that healthcare providers had a general lack of confidence in their ability to provide adequate maternity care for women with physical disabilities.

Another theme was midwives’ challenges in providing competent and quality care for women with mobility disabilities due to a lack of equipment, including special beds and examination tables to meet these women’s needs. The examination, labour and delivery beds were too high and could not be adjusted for the women to get on by themselves, or even with the assistance of a midwife. In addition, the midwives reported there was no prenatal ward or waiting huts where they could place these women during the latent phase of labour. The midwives further emphasised there were no special toilets for women with mobility disabilities, which made it hazardous and difficult for them. Mitra et al. [ 43 ] concur on the barriers to providing maternity care to women with physical disabilities presented from health professionals’ perspectives. The authors indicated that participants from their study reported inaccessible equipment, including examination tables, as a barrier, making it more difficult and time-consuming to care for women with physical disabilities. In addition, Sonalkar et al. [ 38 ] said healthcare providers shared their concern about the lack of adjustable examination tables and transfer equipment, thus presenting a barrier to equitable care for women with disabilities.

Midwives further reported a lack of guidelines and protocols. This resulted in everyone making their own decisions and doing as they saw fit in caring for these women, and, in most instances, not recording the disability at all during antenatal care and admission into labour records. They often only discovered that the woman had a mobility disability at a later stage, when they were in labour. Sonalkar et al. [ 38 ] reported that healthcare providers felt frustrated and overwhelmed by the uncertainty of whether they made the correct decisions when caring for women with physical disabilities due to the lack of guidelines forcing them to use their own judgement. Mitra et al. [ 43 ] determined that most healthcare providers reported a lack of maternity practice guidelines for women with physical disabilities. Also, healthcare providers highlighted the importance of learning about disabilities and having a better understanding of a condition, particularly if it is likely to be exacerbated during pregnancy [ 44 ]. The need to make and read the notes on these women’s antenatal care cards or reports was emphasised.

Due to the lack of clear guidelines and protocols in caring for women with mobility disabilities, the midwives reported they sometimes admitted the woman into the labour ward regardless of the stage of labour, while other midwives did not and wanted them to walk around and come back for admission once they are in the active phase of labour. Furthermore, the midwives explained they often referred these women for caesarean sections right away, regardless of whether the woman could deliver normally due to mere panic from just seeing the disability or based on a previous record of surgery. Smeltzer et al. [ 45 ] researched obstetric clinicians’ experiences and educational preparation in caring for pregnant women with physical disabilities, and they agree on the lack of knowledge among health professionals caring for women with mobility disability.

Devkota et al. [ 46 ] also agree regarding midwives’ inefficiency in providing quality care for women with mobility disabilities. They claim healthcare providers often struggle to understand women with disabilities’ needs as they are not formally trained to provide services to this population. These healthcare providers were found to be undertrained in specific skills that would equip them to provide better and more targeted services for women with disabilities.

Consequent to the challenges in providing holistic care to women with mobility disabilities during pregnancy, labour and puerperium, midwives experienced challenges in allowing significant others to support these women. They reported that as much as they needed assistance caring for these women, and as much as the women would prefer to have their family members or significant others assisting them, this is not possible due to the lack of privacy, especially in public health facilities. Walsh-Gallager et al.’s [ 13 ] study on the ambiguity of disabled women’s experiences of pregnancy, childbirth and motherhood resonate with this study’s findings. The authors reported that women with disabilities’ partners were denied access or had their visits curtailed on several occasions due to inflexible hospital visiting policies. Redshaw et al. [ 47 ] reiterated the same in their study; disabled women were less likely to say their companion or partner was welcome to visit, let alone provide any form of assistance. In addition, a study by Bassoumah and Mohammad [ 48 ] reported that women with disabilities were denied their spouses’ support while receiving maternity care. Byrnes and Hickey [ 39 ] also concur that every effort should be made to allow women with disabilities who are in labour to receive support from significant others, and they should be active partners in the labour process.

Limitations

The study was limited to two of the four regions of Eswatini, namely Hhohho and Manzini; hence, the results could not be generalised for the whole country. The study also only focused on mobility disabilities due to time constraints and limited funds. Future research could be conducted to cover all other forms of disabilities.

This study focused on midwives’ lived experiences caring for women with mobility disabilities during pregnancy, labour and puerperium in Eswatini. In-depth phenomenological interviews were conducted, the findings were analysed, and themes were established. The findings illustrate that midwives experienced challenges caring for women with mobility disabilities during pregnancy, labour and puerperium in Eswatini. There is a need to develop and implement guidelines to empower midwives with knowledge and skill to provide support and holistic maternity care, and enact protocols. They should also have access to appropriate equipment and infrastructure specifically tailored towards promoting optimal health for women with mobility disabilities.

Data availability

The data analysed is available from the corresponding author upon reasonable request.

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Acknowledgements

The authors would like to acknowledge the midwives in the Hhohho and Manzini regions of Eswatini who participated in the study and provided their own experiences of providing maternity care to women with mobility disabilities during pregnancy, labour and puerperium.

The research received funding from the University of Johannesburg Postgraduate Supervisor-linked Bursary.

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F.N.M conducted the research and wrote the manuscript. A.M.T supervised, reviewed, and finalised the manuscript. A.G.W.N co-supervised the study and edited the manuscript for final submission.

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Ethical clearance to conduct this study was obtained from the University of Johannesburg Faculty of Health Sciences Higher Degrees Committee (ref. no. HDC-01-50-2018), University of Johannesburg Faculty of Health Research Ethics Committee (ref. no. REC-01-82-2018) and the Eswatini National Health Research Review Board (ref. no. NHRRB982/2018). Participation in this study was voluntary, and informed consent was obtained from participants before the interviews commenced.

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Temane, A.M., Magagula, F.N. & Nolte, A.G.W. Midwives’ lived experiences of caring for women with mobility disabilities during pregnancy, labour and puerperium in Eswatini: a qualitative study. BMC Women's Health 24 , 207 (2024). https://doi.org/10.1186/s12905-024-03032-z

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Facilitators and barriers in the use of the electronic consultation register for Integrated Management of Childhood Illness in the health district of Toma, Burkina Faso: Perspectives of health care providers

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Background In collaboration with the Ministry of Health and Public Hygiene (MHPH) of Burkina Faso (BF), the Foundation Terre des Hommes (Tdh) has developed the Integrated e-Diagnostic Approach (IeDA) project in BF since 2010 to strengthen the health system by digitalizing medical protocols, improving the quality of services and using data. We sought to identify and analyze the barriers and facilitators of using the electronic clinic registry (ECR) for the integrated management of childhood illness (IMCI) by healthcare providers (HCPs) in the health district of Toma, BF.

Methods We conducted a descriptive and exploratory qualitative study. In-depth individual interviews were conducted with thirty-five (35) HCPs in the health district of Toma, BF, from the 1 st to the 30 th of December 2021. Thematic analysis of qualitative data according to the Braun & Clarke model was performed using NVivo 12 software and arranged along a social-ecological model.

Results Our findings revealed that HCPs play an essential role in using ECR for IMCI. Many key facilitating factors have emerged regarding the use of IMCIs in primary health care (PHC) facilities, such as positive perceptions of the ECR, firm commitment and the involvement of HCPs, stakeholder support, collaborative networks with implementing partners, convenience, privacy, confidentiality and client trust, experience and confidence in using the system, and the satisfaction, motivation and competency of staff. In addition, the easy diagnosis offered by the ECR and the training of HCPs increased the acceptance and use of the ECR. Regarding barriers, HCPs complained about the tablet’s slowness, recurrent breakdowns, and increased workload.

Conclusion This study revealed that ECR has excellent potential to improve the quality of care and, in turn, reduce maternal and infant mortality. Although the satisfaction of the HCPs with the tool is positive, the actors of the Foundation Tdh, in collaboration with the MHPH, must work to optimize the application’s performance and reduce breakdowns and delays during consultations. This will allow the deployment of ECR in all BF health districts.

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The authors have declared no competing interest.

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This study did not receive any funding

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The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The study received approval from the Burkina Faso Health Research Ethics Committee under deliberation number 2021-12-283. Investigation authorization was also obtained from the chief physician of the health district of Toma. Furthermore, the patients/participants provided written informed consent to participate in this study.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

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I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

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Expanding access to healthcare for people who use drugs and sex workers: hepatitis C elimination implications from a qualitative study of healthcare experiences in British Columbia, Canada

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• Jessica Lamb 3 , 4 ,
• Amanda Staller ,
• Mel Krajden 2 , 5 ,
• Robert S. Hogg 1 , 6 ,
• Angela Towle 2 ,
• Viviane Dias Lima 1 , 2   na1 &
• Kate Salters 1 , 6   na1  

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Hepatitis C virus (HCV) is a major health threat in Canada. In British Columbia (BC) province, 1.6% of the population had been exposed to HCV by 2012. Prevalence and incidence of HCV are very high in populations of people who use drugs (PWUD) and sex workers (SW), who may experience unique barriers to healthcare. Consequently, they are less likely to be treated for HCV. Overcoming these barriers is critical for HCV elimination. This research sought to explore the healthcare experiences of PWUD and SW and how these experiences impact their willingness to engage in healthcare in the future, including HCV care.

Interpretive Description guided this qualitative study of healthcare experiences in BC, underpinned by the Health Stigma and Discrimination framework. The study team included people with living/lived experience of drug use, sex work, and HCV. Twenty-five participants completed in-depth semi-structured interviews on their previous healthcare and HCV-related experiences. Thematic analysis was used to identify common themes.

Three major themes were identified in our analysis. First, participants reported common experiences of delay and refusal of care by healthcare providers, with many negative healthcare encounters perceived as rooted in institutional culture reflecting societal stigma. Second, participants discussed their choice to engage in or avoid healthcare. Many avoided all but emergency care following negative experiences in any kind of healthcare. Third, participants described the roles of respect, stigma, dignity, fear, and trust in communication in healthcare relationships.

Conclusions

Healthcare experiences shared by participants pointed to ways that better understanding and communication by healthcare providers could support positive change in healthcare encounters of PWUD and SW, who are at high risk of HCV infection. More positive healthcare encounters could lead to increased healthcare engagement which is essential for HCV elimination.

Canada has committed to eliminating hepatitis C virus (HCV) infection as a public health threat by 2030 [ 1 ]. Chronic HCV infection can progressively damage the liver, potentially resulting in cirrhosis and liver cancer. HCV had infected an estimated 1.6% of the population in British Columbia (BC), Canada by 2011–2012 [ 2 ].

People who currently use or formerly used drugs (PWUD) and with current or former work in the sex trade (sex workers, SW) have particularly high HCV incidence and prevalence [ 3 , 4 ]. These two populations are not mutually exclusive, and the PWUD population in BC is difficult to define and estimate. Most figures for PWUD relate to a subset, people who inject drugs, PWID. A recent study estimated 65% of BC’s PWID will be exposed to HCV in their lifetime, and that the PWID population comprised 1.2 to 1.5% of British Columbians [ 5 ]. In BC at the end of 2015, 45% of people diagnosed with HCV were PWID, and recent research estimated that 80% of incidence was in PWID [ 4 , 6 ]. A prospective cohort of PWID in the largest urban area of BC found HCV incidence of 3.1/100 person-years (PY) between 2006 and 2012, despite widespread availability of free harm reduction supplies [ 7 ]. HCV can be transmitted by non-injection drug use as well, although less efficiently [ 8 ].

Estimating the SW population in BC is speculative, so prevalence is uncertain [ 9 ]. However, two recent studies in Vancouver measured HCV antibodies in cohorts which included SW. Goldenberg et al. found that 44% of 759 SW in their Vancouver study had been exposed to HCV [ 3 ]. Incidence between 2010 and 2014 in this SW cohort was 3.8/100 PY. Incidence was elevated in participants using non-injection crack (6.3/100 PY), and 23.3/100 PY for participants using injection drugs. Shannon et al. found that among 3074 youth who injected drugs in Vancouver, 44% of those that those who did not work in the sex trade had evidence of HCV infection, which rose to 60% of youth involved in survival sex work [ 10 ].

The Treatment as Prevention (TasP) paradigm, initially a strategy to reduce HIV incidence in BC through early treatment of all eligible persons, can also apply to HCV elimination [ 11 , 12 , 13 ]. HIV and HCV differ in two ways relevant to TasP: curability and reinfection. As HIV is a lifelong infection, HIV TasP focuses on reducing transmission through case-finding and rapidly supressing and maintaining supressed viral load [ 14 ]. HCV TasP concentrates on case-finding, treatment, and follow-up as needed to reduce the risk of or promptly treat reinfection [ 15 ]. The microelimination approach complements TasP by structuring the response to ongoing incidence, identifying potential transmission networks and offering testing, treatment, and prevention simultaneously to all people in them [ 16 , 17 , 18 , 19 ].

BC took a critical step in operationalising HCV TasP in 2018 by removing disease-stage eligibility for care covered by the province’s universal medical services plan. This publicly funded HCV care covers antibody and RNA testing, diagnostic investigations, direct-acting antiviral (DAA) and other needed treatment, and follow-up at no cost to patients [ 20 , 21 ]. Expanding eligibility resulted in increased treatment uptake but not equitable access [ 22 , 23 ]. Treatment uptake in high-incidence populations remained under 50% in BC in recent data [ 22 ].

Eliminating HCV as a public health threat requires greater healthcare engagement with PWUD and SW populations, who bear a disproportionate HCV burden [ 1 , 24 ]. Simple and highly effective DAA treatment created a prospect for elimination although critical health system and service barriers are hindering access to HCV care in these high-incidence populations. Many PWUD and SW are disengaged from healthcare, with stigma often cited as the primary reason for reluctance to engage [ 25 , 26 , 27 ]. Understanding the barriers, including prominently stigma from healthcare workers, which these populations commonly face when seeking healthcare and how some of these populations’ members have overcome them provides an opportunity to promote access so that those at high risk of HCV can receive equitable care.

To this end, this research explores healthcare experiences and relationships of PWUD and SW, and how positive and negative experiences affect their willingness to engage in future healthcare, including HCV care.

Theory and methodology

Interpretive Description, a qualitative research approach for applied health research, guided this project [ 28 ]. The Interpretive Description methodology is suited to this research as it can incorporate professional knowledge and theoretical frameworks to guide interpretation toward pragmatic rather than theoretical understanding [ 28 , 29 , 30 ]. Therefore we designed interviews to elicit accounts of specific experiences, and other material contributing to the understanding of the participants’ experiences as they related to the accessibility of healthcare in general and for HCV specifically, to inform recommendations for increasing healthcare engagement.

The Health Stigma and Discrimination Framework (HSDF) proposed by Stangl and colleagues to link stigma and health outcomes is the theoretical framework we used [ 31 ]. (See Fig.  1 ) The HSDF builds on previous work on health-related stigma in the Goffman intellectual tradition [ 32 , 33 , 34 ]. As this framework is not specific to particular health or life conditions, nor a place or time, it can be used in applied research to trace the flow of antecedents of stigma through multiple steps and levels to their impact on individual and population health outcomes. The framework allows theory-based identification of potential intervention points. The framework includes ‘drivers’ which reinforce stigma but also ‘facilitators’ which can decrease stigma. The HSDF informed this study’s interview guide and a priori coding, and led us to focus on drivers leading to stigma manifestations and consequences and facilitators which can ameliorate stigma, rather than on the experiences of stigma as such.

Findings from BC PWUD and SW in the health stigma and discrimination framework

Text in this figure was drawn directly from data and may include items not quoted. BC, British Columbia; ED, emergency department; HCV, hepatitis C virus; HIV, human immunodeficiency virus; PWUD, people who use drugs; STI, sexually transmitted infection; SUD, substance use disorder; SW, sex workers.

The research team included two persons with lived or living experience of key aspects of the populations studied. Methodological and subject matter experts filled out the remainder of the authorship team. A checklist consolidating qualitative criteria proposed by Tong and colleagues influenced the reporting processes [ 35 ]. Ethical approval for this research study was obtained through the Simon Fraser University Research Ethics Board, approval H20-02176.

Sampling and data collection

The inclusion criteria for this study included informed consent, being at least 19 years of age, self-identification as someone who had past or present experience of drug use or work in the sex trade, and willingness to participate in interviews in English on their experiences in the BC healthcare system.

Sampling for this study was purposive. We sought potential participants between May 2021 and July 2022 using various strategies. First, research team members with experience of drug use, sex work, and HCV contacted participants in person at harm reduction sites in cities and towns in the rural parts of BC and through their personal networks and provided them information the study and contact information. Second, regional Drug User Groups, harm reduction, and supportive service organisations for PWUD and SW posted printed and electronic posters with the study’s recruitment text and contact information. These included the Northern BC Network of People Who Use Drugs, AIDS Network Kootenay Outreach and Support Society, and Harm Reduction Saves Lives. Third, in chain sampling interviewees could pass study information onwards to others in their social networks. Sampling was adaptive, to ensure participation of people with experience outside of the main metropolitan area of BC, as Metro Vancouver PWUD in BC are overrepresented in health research relating to drug use. We also prioritised SW, who have been underrepresented in HCV research. NC had no relationship with participants prior to the commencement of the study. JL and AS were acquainted with some of the participants.

Potential participants contacted the lead author by telephone or email to inquire about the study and receive a consent form. Consent forms were delivered to participants via their choice of email attachment, mobile telephone multimedia message, or on paper. Participants returned signed forms electronically or on paper, or informed the team that they could not return them. At this contact, an interview was scheduled for at least 24 h later. Participants who could not return a consent form gave verbal consent before the interview began. The investigators did not require identity documentation, allowing complete anonymity. No participants dropped out or declined to answer questions. All contact with potential and actual participants was virtual, due to COVID-19 pandemic restrictions, with the exception of participants who collected the honorarium in person, which was done outdoors. Interviews were recorded by Zoom® or GoToMeeting® videoconference software, with or without video depending on participant preference or equipment availability. NC initiated calls in a private room at a secure location, and JL joined some calls from a private room. Participants joined from a place of their choice.

Each participant took part in one semi-structured interview of 40 to 120 min and was compensated a minimum of CAD$30 per hour in cash or bank transfer for their time and contributions. The interview guide was pilot tested jointly by NC and JL, reviewed by VDL and KS, and twice revised. Interview questions evoked the quality of healthcare relationships and encounters, and factors that improved or detracted from these experiences.

Following the phases for rigorous thematic analysis as outlined by Nowell et al., NC transcribed interview recordings verbatim (deleting some filler words) and annotated them immediately following the interview [ 36 ]. NC wrote field notes in transcripts, a research journal, and in QSR NVivo® 12 software [ 37 ]. KS read transcripts; NC and JL, a community researcher, reviewed transcripts multiple times becoming familiar with the data. A priori codes had been posited from peer knowledge and theory (cf. Interview guide in Appendix 2). These codes were revised and further codes generated in a deductive–inductive iterative process. We sought themes related to a priori codes (e.g., healthcare avoidance) and the HSDF in a deductive process. Inductive analysis constructed themes (e.g., fear and trust in healthcare relationships) which emerged from the data through theory and researchers’ intuition from lived experience. Patterns and connections between experiences and actions (e.g., consequences of having drug use identified in medical care and refusal of care, building trust with healthcare providers and greater willingness to engage) were recorded in notes and memos as they became evident in the coding. We collated patterns from participants’ answers into themes. Proposed themes and sub-themes were reviewed, rearranged, renamed, and some eliminated during rounds of analysis and discussions between NC and KS, JL, and AS.

NC managed the study data including transcripts, field notes, versions of codebooks, and analytical memos in NVivo® and reflexive notes in a research journal. NC deidentified transcripts during transcription after which recordings were securely deleted. Deidentification concealed places, dates, other persons, work, and non-salient medications and health conditions. Participants did not comment or correct transcripts, but they could request a printed copy of their deidentified interview; two participants did.

The data collected satisfy the definition of meaning saturation [ 38 ]; however, the goal was not theoretical or thematic saturation. Following Interpretive Description, we considered sampling sufficient when the breadth of experiences, including geographical spread and diverse or contrasting cases, was appropriate to create knowledge to inform the practices relevant to this research [ 39 , 40 ].

KS contributed to methodology choices and identifying a priori codes. NC, KS, and JL read transcripts. KS, VDL, NC, and JL developed, piloted, and revised the interview guide. NC and JL contributed to identifying a priori and emergent codes, coding, analysis, and interpretation. NC drafted the paper. All authors reviewed drafts and contributed to the interpretation. NC made the final selection of themes to be presented and examples to illustrate each theme.

Twenty-five participants were interviewed, including 15 women, nine men; two participants used neutral pronouns, one of whom also used male pronouns. Of the 11 HCV infections discussed (including one case of reinfection and one of a close relative of a participant), six were cured and five were not treated. Participants brought up their status in five populations recognised as having elevated exposure to HCV: 24 participants spoke of their use of drugs (previous or current), two mentioned Indigenous identity, three men spoke of sex with men, 12 had previous or current sex work, and 12 had experience in correctional institutions. In addition, 11 participants mentioned mental health diagnoses and 11 experience of being unhoused.

Participants described their experiences accessing healthcare, their willingness to engage in care, and the critical importance of communication by healthcare professionals in their experience. Their relationships, whether brief in a single encounter, or extended in a hospital stay or primary care attachment, were shaped by patterns of communication that healthcare workers may not be conscious of.

We present the findings in three major themes: (1) “Other than, lesser than” Access to healthcare , which collects data on whether or not participants received care; (2) “It’s hard to reach out for help” Choices of healthcare avoidance or engagement , in which the emphasis is on whether or not participants wanted care and under which conditions, and (3) “Treat me like a human” Communication and relationships in healthcare, in which participants describe qualities of verbal and non-verbal communication shaping their experience in healthcare and contributing to their willingness to seek healthcare . Some participants’ answers emphasised individual-level factors contributing to healthcare encounter quality, and others brought in institutional- or societal-level factors.

Theme 1: “Other than, lesser than” access to healthcare

This theme on participants’ access to healthcare collated cases when participants described their efforts to seek healthcare, their success or failure, and the impact of their perception of institutional culture. While almost all participants had some experiences of healthcare in BC which they labelled as good, the times when they did not receive such care stood out to them. Participants described common failures of healthcare, including delays or refusal of care for infection, illness, or injury, inadequate or absent pain management, and some counterexamples.

Notably, many experiences described involved multiple healthcare providers within the institutions providing care. In one example of delayed HCV care, a maternal health team diagnosed participant 13 (PWUD, SW) with chronic HCV but offered no counselling or path to treatment. “… [T]he kids… I’ve been at risk over the years.” She pursued HCV care through a low-threshold clinic after her primary care provider was slow to act when she became symptomatic:

Participant 13: “I got frustrated when I wasn’t getting any results back … I had to go down on the [inner city] where a low-barrier hep C program is. I got my name on the list and that’s how I got treated.”

While delay in HCV care was more common among participants than timely care, it should be noted that this sample was not representative of the PWUD and SW populations in BC. Nevertheless, it was particularly striking that so many of the participants did not have the first step in HCV care despite their high probability of exposure: knowing their HCV status.

HCV is rarely an emergency, but participants also spoke of being refused care in emergency departments (EDs) for serious conditions. Participants perceived the refusal of care to be related to their status as PWUD. The following quotes include one participant who worked in an ED and described the institutional culture regarding PWUD in EDs where they have worked.

Participant 4 (PWUD) was turned away from an ED with untreated bone fractures:

Participant 4: “Yeah, broken [bones] for three weeks. And I didn’t [go to another hospital] because when I went … they did nothing to help me, and they dismissed me as a dirty drug user.”

When she did seek healthcare again seen three weeks later, she was scheduled for surgery.

Participant 11 (PWUD, SW) was repeatedly refused adequate care in an ED over the course of several days as her health deteriorated, putting her long-term health at risk. She perceived that the delay in access to life-saving healthcare by multiple healthcare providers was due to her being identifiable as a PWUD:

Participant 11: “… they didn’t run the proper tests that they should have if I was someone that wasn’t displaying signs of active addiction. So I ended up staying in the hospital for [a week and a half] with IVs connected and almost lost [an organ function] because of [the] infection.”

A participant [all details withheld] who worked in an ED described the culture which led from people being perceived as drug-seeking to them being refused care.

“If you are classified as dope-seeking or drug-seeking in Emerg, you are kiboshed. The quicker you get thrown out is the most rewarded behaviour. You are deemed an absolute powerhouse, not to be reckoned with, for throwing out the dope seeker. [laughs] You get props for that kind of stuff. Dope-seeking in Emerg is laughed at and not treated. And even more, people will boast that they caught it. … ‘We knew exactly was he was doing, didn’t get nothing out of us.’…Once you get labelled with drug-seeking, you’re done at Emerg. You’re not going to get treatment for a broken foot that day.”

A phrase frequently used was “lesser than”, i.e., not being seen or treated equitably by healthcare professionals. Devaluing the health of PWUD could be fatal, as described by participant 12 (PWUD, SW). Participant 12 was waiting in an ED when another patient alerted medical staff that a third patient was showing diminished consciousness and other early signs of toxicity. The second patient suggested the nurse check his vital signs. Participant 12 heard an ED nurse falsely claim to have already checked him. The third patient went into the washroom and had a cardiac arrest with the door locked. Participant 12 saw a team responding to ‘code blue’, indicating he required resuscitation. She saw the team using a defibrillator, but she did not know whether he survived. She could not be sure if attentive staff could have averted the incident, but she witnessed the lack of urgency. She attributed the staff’s slow reaction to an institutional culture which dismissed the health and life of a PWUD:

Participant 12: “They had the curtain, everything, shocking him and everything. The time they took to get that [washroom] door open because he was a dumb little addict is too long. It was about 20 minutes by the time they figured out how to get that door open. … And if she had done his vitals before, when the … lady asked her to?”

Three further examples illustrate aspects of a particular kind of care refused in primary care and hospital settings. Pain management after injury or surgery could be insufficient or denied to participants who had been identified as PWUD. The first quotation depicts a typical example of a participant denied pain relief by healthcare providers who were more concerned with the danger of addiction than the intense pain. Another example describes healthcare providers deliberately cutting off pain medication, apparently for their own amusement. In each of these scenarios, the healthcare staff devalue the extreme pain suffered by the participants, creating an immediate problem and long-term mistrust.

Participant 8 (PWUD, SW) received only paracetamol with codeine in hospital after abdominal surgery, which she found to be inadequate to relieve pain. She was denied this and any further prescriptions once she left the hospital, leaving her in severe unrelieved pain. For her this was a stigmatising experience which she generalised into a profound reluctance to seek healthcare:

Participant 8: “I hate them so much. It was that thing where you just feel so demeaned and so ‘other than’ and you’re just looking to get your needs met when you’re in pain. I had a 7-inch-long scar down the middle of my belly…. and they wouldn’t give me my medications…. So now when I’m sick or something’s going on… I’m like ‘No, they’re not going to help me anyway.”

Participant 1 (PWUD, SW) described hospital staff deliberately exposing them to intense pain. Two hospital staff mocked up a morphine pump and dislodged their IV pain medication supply when transferring them to and from another care site. Participant 1 told how staff members ignored their distress:

Participant 1: “They said, ‘Hey, when you’re with us you get this. You get that extra pump of morphine every five minutes.’… It wasn’t hooked up to anything. … I really got in my head about it for a long time afterward. I was like, ‘What would motivate someone to do that?’ … Well, prejudice against people who use drugs. … I started pouring sweat and … they were basically laughing at me. … It was like everyone was in on the joke.”

It was alarming to Participant 1 that the medical staff had evidently planned together to deprive them of pain relief, implying that neglecting the pain of PWUD patients was condoned by institutional culture.

Participant 18 (PWUD) described multiple times healthcare providers refused to provide pain relief after injuries or invasive medical procedures, even years after he stopped taking any drugs but prescribed buprenorphine-naloxone. He perceived this to be due to the providers’ judgment that PWUD wanted the medicines for enjoyment, rather than for pain therapy:

Participant 18: “It’s horrible…. It’s really unfair and not right that people should have to suffer in pain because [healthcare providers] think they’re getting something out of it by giving it to them. When I really am just getting relief. I don’t know. That’s a hard topic to talk about because I suffered so much.”

Participants also described effective pain management. Participant 15 (PWUD, SW) was concerned about taking opioids when he had surgery within a year of stopping drug use. Concerned about relapsing, he tried to recover from surgery without asking for analgesia. He felt ashamed to ask for medication, but eventually he could not stand the pain. When he did ask, healthcare staff quickly administered morphine, saying, “You don’t have to wait for it to be that bad. If you need help we can help you.” Other participants reporting effective post-surgical pain care had their addiction specialist or family doctor communicate with the surgical team to plan the pain therapy.

Theme 2: “It’s hard to reach out for help” choices of healthcare avoidance or engagement

This theme gathered the variety of participants' desired and actual levels of engagement with the healthcare system. Participants fell into four categories, with some avoiding healthcare while acknowledging, and sometimes suffering, the risks of remaining untreated or treating themselves. These participants would only use emergency care, and some avoided even that. Others were able to retain a primary care provider who kept them engaged in healthcare even throughout years of problematic drug use, precarious housing, or work in the sex trade. They highly valued these long relationships. Between these endpoints were participants who relied on urgent-care or walk-in clinics for primary care. Some participants using walk-in clinics would prefer to have a regular family physician but were unable to find or retain one. Finally, others preferred walk-ins as they could choose how much of information to reveal. As seen in Theme 1, being identified as a PWUD could limit the care available, and some participants did not disclose their history. For these participants, BC’s patient-centred care policy did not provide them the care they desired. Centring the patient asks healthcare providers to look at the whole person, not just the health condition.

Some participants, including Participant 10 (PWUD, SW) found the “whole person” approach intrusive. “ I don’t need you to tell me what’s wrong with my life. … I just need some medical intervention.” Rejecting such intrusion, Participant 10 told about treating an infection with prescription antibiotics on her own, and asserted that she would have sacrificed the limb to avoid going to a hospital where she expected to face stigma from healthcare providers:

Participant 10: “I had an abscess once in an injection site. No way. I probably would have lost that arm before I would have gone into a hospital and said, like, ‘I’ve been injecting drugs with a dirty needle.’ … I had access to antibiotics. I medicated myself. ”

Participant 13 refused to go with an ambulance whose crew tried to bring her to an ED after she escaped a murder attempt with injuries. She adamantly refused further treatment because she had been poorly treated in the past.

Participant 13 (PWUD, SW): “I was covered in blood, … and I would not let them take me to the hospital. …I would have felt like I got raped over again, you know what I mean? The way how I’ve been treated in the past. I was not going to fucking put myself in a situation like that again.”

In a case of a well-engaged person, Participant 9 (PWUD) attributed her consistent seeking of healthcare to good experiences in her youth. She was able to maintain a connection to care despite long periods of uncontrolled drug use and other challenging situations. “When I was in addiction, as soon as I noticed anything, in I went.” She attributed her survival to her strong engagement, as she rapidly sought treatment for a life-threatening antibiotic-resistant soft-tissue infection and received therapy promptly.

Participants described times when they were conflicted as they thought the correct thing to do was to seek care but they did not. These participants chose to treat their own medical conditions or go without care rather than seeking care from EDs or urgent care clinics like they ‘should’. Participant 17 (PWUD) described in detail how he used household tools to set his own broken finger rather than seek professional care. Participant 5 (PWUD) ended up hospitalised with an overdose after treating herself with medicines from a trusted friend. Participant 24 (PWUD) frequently injured himself at his job, and treated himself when he could. He described a cut which bled for four hours while he tried to glue it shut. “I know I should go for stitches, but if I can crazy-glue’em, that’s where I’m at. If I have a broken toe or hands and shit, I just don’t go…. Oh yea, yea, I know.”

Participants also changed their engagement in care. Participant 22 (PWUD) knew he had HCV but his primary care providers did not engage him on it so he “just set it aside”. After family and friends had good experiences with DAA therapy he sought treatment. “I might as well give it a chance and not let [HCV] take too much of my health away. Before it’s too late…”.

Theme 3: “Treat me like a human” communication and relationships in healthcare: Participants’ perceptions of the roles of respect, dignity, stigma, trust, and fear

This theme of communication and relationships in healthcare examines how the relational aspects of respect, dignity, stigma, and trust, were enacted or conveyed, and the effect of fear on communication between participants and healthcare providers. While most healthcare interactions explicated in the two themes above involved two-way communication, the participants focused their descriptions on other aspects. In this theme we look more closely participants’ perceptions of the effects of verbal and non-verbal communications.

Contrasting descriptions of attentive and dismissive one-on-one communication with a healthcare provider are seen in subsequent quotations. Participant 6 (PWUD, SW) described how verbal and non-verbal communication made a first encounter with a new family physician positive:

Participant 6: “The first time I met him, he sat down and we discussed like all of my health concerns for an hour. And he sat there at my level and actually like he listened to me and explained everything in his perspective, and just, I felt really validated.”

Participant 4 (PWUD), in contrast, spoke of encountering dismissive attitudes in healthcare settings where she thought more attentive healthcare providers should pick up non-verbal communication from patients who were not ready to communicate fully. In her experience, fear prevented her from saying what she needed to healthcare providers.

Participant 4: “… people get really dismissed in a medical setting because the doctor knows best, and that’s it. So they’re not really listening to what you are saying. Or they’re not really listening to the things you’re not saying, which is: ‘I’m scared. I’m terrified. This is too much information for me to take in all at one time. Slow down.’ We don’t say those things.”

Participant 23 (PWUD), who had untreated HCV, spoke of not being able to get the better of his fear when encountering healthcare providers during a drug-using phase of his life, preventing him from communicating the extent of his drug use. “Yeah, in active addiction, probably wasn’t the most honest guy, you know. I was always fearful.” This experience was echoed by Participant 22 (PWUD) who described the dynamic of active PWUD who “are in protection mode all the time. It’s a learned behaviour. Trust, vulnerability, are off the table.”

Participant 10 (PWUD, SW) had a long-standing relationship with a family physician who retired before DAA eligibility expanded to include Participant 10. She did not have enough trust in healthcare providers to speak to a new physician about HCV:

Participant 10: “I don’t really know in what context I would bring it up with someone who doesn’t already know my history. I feel like it would make me extremely vulnerable…. Do I want to disclose that to a doctor I don’t know? Like, is he going to ask me questions about my past? Right now, I live in a very small community, right?”

Participant 4 (PWUD) noted that she needed to have the courage to build trust with her healthcare provider and tell the truth about her drug-use history and be honest about her fear. She described how her physician showed he did not judge her and recognised her efforts, saying, “Look, you know, these things happen. And you know you’re changing that around now….” He gained further trust by asking if she would try things, contrary to what she had feared. She had expected him to force treatments on her.

Participant 2 (PWUD) pointed out that trust needed to be established on both sides. Healthcare providers frequently inquired about drug use more than 10 years after she ceased taking drugs. “They always just assume that you still could be using and just not saying anything, right?” This perceived mistrust detracted from her healthcare relationship.

Participants 10 (PWUD, SW) and 4 (PWUD) were among those who spoke about how communication about issues outside the ones the participant wished to raise could be perceived as judgmental and stigmatising. Participants tried to keep the discussion away from their history of drug use or sex work, and on the medical complaint they came for. Participant 10: “ It’s just it’s hard to reach out for help when you’re going to be stigmatised.”

Participant 4: “When you go in so broken … if they don’t handle [your history] well … you start feeling really embarrassed and shameful. So, you already got enough of that, trying to get out — even [ > 10 years] in sobriety — you already have enough of that to last a lifetime. You don’t need that from your healthcare professionals.”

Respect can be expressed in verbal and nonverbal communication as well as actions. Participants found it important to communicate explicitly to establish a respectful relationship and recognition of their dignity. Participant 5 used a phrase that came out in many interviews: the wish to be spoken to and treated “like a human”. “[They assume I have no education.] They won’t talk to me like I’m a human, really. Oh yeah, it’s awful.”

Nonverbal communication was particularly important in whether people felt they could maintain their dignity Participant 11 (PWUD, SW) contrasted her perceptions of lacking dignity when she was laughed at to her later experiences:

Participant 11: “I went into the washroom and used while being in the ER. And I had ... a small seizure… and the security were coming in, they started laughing at me. I was then put into a room with restraints … I was treated very poorly and with no dignity. Like, I felt like the scum of the earth. And I can definitely tell I was treated like that because I was in active addiction, because I’ve gone to the hospital after that while being clean and been treated totally different. Like, with morals, compassion, empathy. And I did not have that experience before that.”

Participant 20 (PWUD, SW) maintained a strong relationship with a primary care provider during periods of drug use and sex work. One night she needed emergency care. A nurse’s comment had a near-fatal result and left an indelible memory:

Participant 20: “I had an infection in my arm because of intravenous using and the [triage nurse] that was admitting me actually said, ‘Well it’s your own damn fault.’ … If I could’ve stopped, I would’ve stopped. … I was so filled with shame and guilt, I attempted suicide that night after I left the hospital. I’ll never forget her saying that to me.”

Participant 19 (PWUD) was one of the participants who appreciated a healthcare provider drawing diagrams about their care for them in a combination of verbal and non-verbal communication:

Participant 19: “She explained how everything was going to go… drew out diagrams for me … ‘this is what this is, and this is what that is.’ … Like she explained everything and what the [drugs] would do. It just– that really is reassuring. And you’re knowing what your medical journey is. It’s being totally explained to you, instead of living in the dark.”

Participant 4 (PWUD) gave another positive account of an individual healthcare provider countering the effect of previous experiences. Her doctor asked her why she had avoided all healthcare for 10 years. After hearing of the times when she experienced indignity in healthcare, he explicitly took a position: “[He said,] ‘I’m so sorry, you should never have been treated like that…. There’s no way that should have happened.’”.

This study illustrated a wide range of healthcare experiences of PWUD and SW in BC. Negative experiences outweighed positive ones in participants’ recall. Low healthcare engagement among PWUD and SW has been shown in extensively in research, but most studies concentrate on healthcare avoidance on the part of PWUD and SW during active use and work, though there are exceptions [ 27 , 41 , 42 , 43 , 44 ]. Our findings showed diminished access to healthcare through both participants’ avoidance of care and providers’ refusal to give care. Participants also reported the effects of negative experiences lasting for many years after drug use or sex work had ceased.

It has long been recognised that stigma detracts from many aspects of healthcare for people and populations that are labelled and devalued by healthcare professionals, reflecting general attitudes in their society [ 32 , 34 , 45 , 46 , 47 , 48 , 49 , 50 ]. Many negative experiences depicted in this study fell in the category of stigma manifestations, in terms of the HSDF. Negative experiences were traceable to the HSDF’s drivers of stigma, including lack of respect for PWUD and SW patients, lack of appropriate training, and institutional culture allowing inequitable treatment of PWUD and SW. PWUD and SW generalised their negative experiences, resulting in low seeking and uptake of care. Each participant could also recall healthcare experiences meeting BC Ministry of Health standards, i.e., quality, appropriate, and timely health services [ 51 , 52 ]. Participants appreciated listening, trust, understanding, encouragement, respect, empathy, and compassion. Regarding the HSDF, these are the results of facilitators such as healthcare worker training, trauma-informed care, nonjudgmental institutional culture, and positive individual attitudes. Figure  1 shows the Health Stigma and Discrimination Framework with examples from this study [ 31 ].

Given the many efforts over decades to reduce stigma in healthcare, the findings of severe and long-lasting effects of stigma shown in detail in our findings are all the more troubling. Our results add to prior studies’ findings that the issue of stigma in healthcare was a high and consistent priority for PWUD and SW [ 53 , 54 , 55 , 56 ]. As other studies which explore patient experience as a PWUD, SW, or person with HCV we found current and former PWUD and SW populations presenting multiple reasons for low healthcare engagement, many at least partially credibly associated with stigma: experiences of dismissive attitude, intrusive questioning, blaming and other types of poor communication, delays in care, inadequate or inappropriate care, and withholding of care directly or indirectly reduced access to emergency, acute, and primary healthcare for participants [ 43 , 44 , 50 , 57 , 58 ].

Our findings offer positive and negative examples of how verbal and nonverbal communication affected healthcare relationships. Trust is recognised as an important aspect of healthcare [ 59 , 60 , 61 , 62 ]. Healthcare staff who spoke rudely, blamed participants for their own health issues, laughed at participants, asked questions not related to the medical intervention, lectured participants about their life or past as a PWUD or SW created distrust and reluctance to engage in healthcare. Clinicians who sat at the participants’ level, spoke empathetically when learning of participants’ history of negative experiences in healthcare, apologised for their institution, fully informed participants often by explaining processes with diagrams, shared decision-making, spoke nonjudgmentally about their past, and most importantly, listened respectfully could build trust. Explicitly addressing past stigma and adverse healthcare experiences, and demonstrating respect also built trust and dispelled fear. Participants in ongoing nonjudgmental healthcare relationships appreciated providers’ questions about past experiences in healthcare.

In literature on stigma in healthcare, fear is presented as felt by the more powerful party in an interaction, as a driver of stigma [ 31 , 34 , 63 ]. This study’s results can alert healthcare providers to the likelihood of fear being felt by patients with a history as PWUD or SW, especially in early visits with a new provider. Fear in our data was not only fear of anticipated stigma, but a generalised fear which inhibited participants’ ability to communicate with healthcare providers.

Provider-initiated HCV care was remarkably low. Delay or refusal of treatment is contrary to a TasP approach. The lack of care described by participants contributes to the expansion of the HCV epidemic as long as transmission of HCV remains high in populations with active drug use and sex work [ 3 , 4 ]. The first step in HCV care is diagnostic testing, and since 1997 Canadian guidelines have consistently recommended tests for people who inject drugs and MSM [ 64 ]. However, we found that many participants did not know their HCV status, despite falling within testing recommendations. Of those who tested positive for HCV RNA, it was common for them to find care on their own initiative, or not seek care rather than having diagnosis and treatment or referral offered, per guidelines, by primary healthcare providers [ 65 , 66 , 67 ].

Changes in communication in ED have great potential as the ED is the only contact with the healthcare system for many PWUD and SW [ 42 ]. Study findings of the common occurrence of negative experiences in EDs suggest that more deliberate and respectful communication and efforts to build trust in emergency settings could be a step toward drawing people who avoid regular healthcare back into the primary care system.

Limitations of this study included the requirement to conduct interviews remotely due to Ethics Board requirements during COVID-19 restrictions, which biased the sample towards people in more stable situations which may be atypical for current PWUD and SW. This bias was mitigated by adaptively recruiting participants with living experience of drug use and sex work, and asking participants about past experiences. Another limitation was using a single main coder, increasing the risk of systematic personal bias. This limitation was mitigated by the co-review of transcripts and coding by JL, a research team member with lived and living experience of the conditions of interest. NC not being a member of the communities of interest was another limitation. This limitation was mitigated by having two team members with lived and living experience of HCV, drug use, and sex work. The ability to explore experiential issues such as engagement with sex work shaping PWUD experiences was limited by the choice of Interpretive Description as an approach, which directed attention away from deeper understanding of the of experiences of stigma, and toward implications for healthcare practice. A strength of this research was that it included experiences across the province, in contrast to the majority of research with PWUD and SW in BC concentrating on Vancouver’s metropolitan area or Downtown East Side, which has been described as one of the most heavily researched populations in the world [ 68 ]. Another strength is the inclusion of people who were known to have a high probability of exposure to HCV whether or not they had been tested, thus capturing more of the experiences of people who avoid healthcare and do not know their HCV status.

Our study builds on previous evidence that healthcare engagement in PWUD and SW is low, and that stigma and other negative experiences decrease willingness to seek or accept healthcare. Low healthcare engagement will slow HCV elimination, as scale-up of HCV TasP and implementation of microelimination depend on a large proportion of people willing to engage in offered HCV testing and treatment.

In this study, collecting data on positive and negative experiences enabled us to identify potential points and means to support positive change in healthcare encounters of two high HCV-incidence populations critical to the success of elimination. While few healthcare providers deliberately undertreat, reject, or stigmatise their patients, providers should understand that many of their patients with histories of drug use or sex work have experienced stigma or inadequate treatment when seeking healthcare. Such negative experiences may have become generalised in PWUD and SW attitudes to all healthcare providers, creating fear of rejection, stigma, coercion, or refusal to provide adequate care. Healthcare providers can actively work to reduce the effects of negative healthcare experiences once they are aware of patients’ history and its long-term effects. Inquiring about past experiences, being aware of the tension between fear and trust, being explicit about accepting patients’ past without judgment and respecting their efforts to improve their health are all ways that healthcare providers can support patients with a history of drug use or sex work.

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Abbreviations

British Columbia

Emergency department

Hepatitis C

Human immunodeficiency virus

Person (or people) who use (or used) drugs

Ribonucleic acid

Sexually transmitted infection

Substance use disorder

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Acknowledgements

The authors are grateful to Christina Fulton for her valuable contributions.

This research was directly funded by the University of British Columbia Public Scholars Initiative. In addition, Canadian Institute of Health Research Grant CIHR PJT-148595 provided support.

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Viviane Dias Lima and Kate Salters: Co-senior authors.

Authors and Affiliations

HIV/AIDS Drug Treatment Program, British Columbia Centre for Excellence in HIV/AIDS, St. Paul’s Hospital, 608–1081 Burrard Street, Vancouver, BC, V6Z 1Y6, Canada

Nance E. Cunningham, Robert S. Hogg, Viviane Dias Lima & Kate Salters

Division of Infectious Diseases, Faculty of Medicine, University of British Columbia, 170-6371 Crescent Road, Vancouver, BC, V6T 1Z2, Canada

Nance E. Cunningham, Mel Krajden, Angela Towle & Viviane Dias Lima

AIDS Network Kootenay Outreach and Support Society, 209a 16 Ave N, Cranbrook, BC, V1C 5S8, Canada

Jessica Lamb

East Kootenays Network of People Who Use Drugs, 418-304 Street, Kimberley, BC, V1A 3H4, Canada

British Columbia Centre for Disease Control, 655 West 12th Avenue, Vancouver, BC, V5Z 4R4, Canada

Mel Krajden

Simon Fraser University, 8888 University Dr W, Burnaby, BC, V5A 1S6, Canada

Robert S. Hogg & Kate Salters

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NC: conception, data acquisition, funding acquisition, investigation, methodology, writing, and review; JL: conception, data acquisition, investigation; AS: conception, investigation, review; AT: conception, editing, review; MK: conception, editing, review; RH: conception, editing, review; VDL: conception, funding acquisition, editing, review, supervision; KS: conception, methodology, editing, review, supervision. All authors read and approved the final manuscript.

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Correspondence to Viviane Dias Lima .

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Appendix 2: Interview guide

Interview guide for hepatitis c priority population healthcare experiences.

Revised 9 Nov 2021

Thanks for this call. In this interview, we want to understand your experiences in healthcare system in BC. The ultimate goal of this project is to improve the quality of hep C care experience in BC. I am Nance Cunningham, and this is part of my PhD research. I am Jessica Lamb, [Jess introduces herself]. You have chosen to talk with us for 30/60 min, but you can change your mind at any time, to speak for longer or shorter.

This interview is about your experience in healthcare, including what you have witnessed and felt. We/I don’t need to know your medical conditions, only about your view of your healthcare experience. What you tell us/me will remain anonymous, unless you have chosen to use your own name. We may quote you with the name you have chosen. The interview as a whole remains confidential, and can be read only by the research team. Only quotations of a few sentences may be published.

If you don’t want to answer a question, that’s no problem, just ask to go on to the next question. If you want to tell us/me something not asked, please do. Do you have any questions about the interview? [Answer any questions]

[As Jessica told you earlier], we/I will record and write out this interview to be sure of your exact words. I will start recording now. [Start recording] You can ask me to stop any time. Let us/me know if you need a break for any reason.

[ For those who have not been able to provide informed consent, ask for informed consent and pseudonym here: Please state whether you understand this study, and consent to do this interview, and what name you would like to be used if we quote you.]

To start off, we/I’d like to ask you about your recent experiences in healthcare in BC. That is about in experiences in any kind of healthcare setting, it could be a hospital stay, a clinic visit, something that happened in an emergency room, with picking up a prescription, going to a lab, 911 call, anything like that. You can talk about what you experienced yourself, or what happened to someone else when you went with them.

Thank you so much for talking with us/me today.

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Cunningham, N.E., Lamb, J., Staller, A. et al. Expanding access to healthcare for people who use drugs and sex workers: hepatitis C elimination implications from a qualitative study of healthcare experiences in British Columbia, Canada. Harm Reduct J 21 , 75 (2024). https://doi.org/10.1186/s12954-024-00991-2

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Paramedic attitudes and experiences working as a community paramedic: a qualitative survey

• Aarani Paramalingam 1 ,
• Andrea Ziesmann 1 ,
• Melissa Pirrie 1 ,
• Francine Marzanek 1 ,
• Ricardo Angeles 1 &
• Gina Agarwal 1 , 2  

BMC Emergency Medicine volume  24 , Article number:  50 ( 2024 ) Cite this article

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Community paramedicine (CP) is an extension of the traditional paramedic role, where paramedics provide non-acute care to patients in non-emergent conditions. Due to its success in reducing burden on hospital systems and improving patient outcomes, this type of paramedic role is being increasingly implemented within communities and health systems across Ontario. Previous literature has focused on the patient experience with CP programs, but there is lack of research on the paramedic perspective in this role. This paper aims to understand the perspectives and experiences, both positive and negative, of paramedics working in a CP program towards the community paramedic role.

An online survey was distributed through multiple communication channels (e.g. professional organizations, paramedic services, social media) and convenience sampling was used. Five open-ended questions asked paramedics about their perceptions and experiences with the CP role; the survey also collected demographic data. While the full survey was open to all paramedics, only those who had experience in a CP role were included in the current study. The data was qualitatively analyzed using a comparative thematic analysis.

Data was collected from 79 respondents who had worked in a CP program. Three overarching themes, with multiple sub-themes, were identified. The first theme was that CP programs fill important gaps in the healthcare system. The second was that they provide paramedics with an opportunity for lateral career movement in a role where they can have deeper patient connections. The third was that CP has created a paradigm shift within paramedicine, extending the traditional scope of the practice. While paramedics largely reported positive experiences, there were some negative perceptions regarding the slower pace of work and the “soft skills” required in the role that vary from the traditional paramedic identity.

Conclusions

CP programs utilize paramedic skills to fill a gap in the healthcare system, can improve paramedic mental health, and also provide a new pathway for paramedic careers. As a new role, there are some challenges that CP program planners should take into consideration, such as additional training needs and the varying perceptions of CP.

Peer Review reports

Community paramedicine (CP) is an emerging professional role where paramedics use their training and skills in emergency response to respond to individuals with non-acute needs who do not require transport to hospital [ 1 ]. In Ontario, Canada, CP programs have begun to garner attention as an innovative approach to support independent living in an aging older adult population with complex health conditions [ 2 ]. Although there were some very early adopters of CP programs in Ontario, these programs began to gain momentum in 2013 [ 3 ]. By 2014, 13 Paramedic Services in Ontario reported having CP programs [ 2 ]. Community paramedicine programs can be diverse in scope, and can include paramedics completing home visits to frequent 911 callers, supporting clients with healthcare navigation, providing community-based education, and conducting drop-in clinic style wellness programs [ 1 ]. The structure, mandate, and resources required for CP programs tend to vary by paramedic service and local contexts. Staffing and training arrangements can also vary, with some programs designating full-time ‘community paramedics’ while others deploy paramedics on modified duties to staff programs.

Our literature review found that few studies have sought to understand how paramedics experience and view these programs. Evaluations of CP tend to focus on patient experiences, such as their health outcomes and health service utilization [ 4 , 5 , 6 ]. While participants have generally expressed support for and acceptance of CP [ 5 , 6 ], it is unclear exactly how paramedics perceive CP programs, particularly as it relates to their understanding of paramedic professional identity and their mental health.

As the CP role becomes a more permanent part of paramedic practice, it is expected to redefine and broaden the paramedic identity beyond its traditional boundaries. Historically, service users and healthcare providers have defined paramedics as thrill seekers who provide transport, emergency response, and trauma care [ 7 ]. However, as the delivery of healthcare has become more complex and integrated, paramedic identity has also shifted. Paramedics in Canada have already adopted broad professional identities such as ‘clinician,’ ‘educator,’ ‘team member,’ and ‘patient advocate’ [ 8 ]. This expansion of the paramedic identity is expected to accelerate as CP programs are increasingly adopted in Ontario. CP programs require paramedics to work with individuals on a repeat basis, provide chronic disease management services, and use ‘soft’ skills such as motivational interviewing and advocacy. How paramedics feel about these changes to their professional identity as a result of CP has yet to be understood.

Additionally, participation in the CP role may alter paramedics’ mental health experience. Paramedics in traditional emergency response roles tend to experience Occupational Stress Injury (OSI) due to demanding work environments and exposure to traumatic incidents [ 9 , 10 ]. Occupational Stress Injury refers to any form of psychological stress resulting from the duties one performs on the job [ 9 ]. While OSI is common for all public safety personnel, some studies suggest a higher incidence of post traumatic stress disorder for paramedics when compared to police officers and firefighters [ 11 , 12 ]. Paramedics are estimated to be at higher risk of screening positive for a DSM-IV mental disorder than municipal or provincial police services, firefighters, and dispatchers [ 12 ]. While some preliminary research in one CP program suggests that paramedics who practice CP experience reduced stress and a greater quality of work life [ 9 ], it is unclear how working in CP programs in different capacities may alter paramedics’ exposure to OSI and affect one’s overall mental health.

This paper seeks to describe the positive and negative experiences of paramedics working in a CP program and assess CP’s impacts on paramedic professional identity and paramedic’s mental health experience. As paramedic experiences may not be aligned with the experiences of CP program participants or even paramedic leadership, this paper also seeks to identify workplace elements (e.g., training, supports, paramedic leadership and culture) that may promote or hinder the expansion of CP programs in Ontario.

A survey tool was developed and distributed by the McMaster Community Paramedicine Research Team in 2016, using the online platform FluidSurveys, to assess paramedics’ perceptions and experiences working in a CP role. The survey was developed based on recurring themes and insights from a focus group and three key informant interviews with paramedics. The survey drafts were also reviewed and approved by a paramedic and a paramedic superintendent with research experience. The survey tool used open-ended questions to have paramedics describe their perception of the CP role prior to, and after working in a CP program, including both positive and negative aspects.

Population and recruitment

Paramedics were invited to participate in a survey that was distributed through social media by the Ontario Paramedic Association and the CP@clinic program. On Twitter, the invitation to complete the survey was re-tweeted by multiple accounts including paramedic services, paramedic staff, and other accounts. In addition, some Paramedic Services in Ontario delivering CP programs emailed the survey link to their paramedic staff. All paramedics (with and without CP experience) were invited to complete the full survey, but only those who indicated that they had worked in a CP role were included in this study (screening question in the survey). Respondents were informed about the purpose of the research study and informed consent was obtained. This study was approved by the Hamilton Integrated Research Ethics Board (Project #13-466).

Data collection

A convenience sample was collected using an online survey. The survey was available for 16 weeks from October 2016 to January 2017, to provide ample time to gather responses from all potential participants. Data from the open-ended questions were collated into a single transcript.

The survey collected the following demographic information: age, sex, years of service, type of paramedic training (i.e., primary care, advanced care, critical care), whether the paramedic was on modified duty while working in a CP program (i.e., awaiting return to regular duties), length of time working in CP programs, and types of programs they worked in. Fivetypes of CP programs were provided as options: home visit program, clinic style program, paramedic navigator style program, triage program, and other.

The following open-ended questions were asked to elicit responses about paramedics’ experience of the CP role:

What was your opinion of community paramedicine before working a community paramedicine role?

Please explain how your opinion of community paramedicine has changed since working in a community paramedic role?

What was positive about your experience working in a community paramedic role? What did you enjoy about this role?

What were the negative aspects in your experience working as a community paramedic?

Would you like to change anything about the community paramedic role?

A comparative thematic analysis was used to describe the experiences of community paramedics before and after working in a CP role. Two members of the research team (AP, AZ) independently coded responses and identified emergent themes. Using a phenomenological approach during secondary coding, coders grounded the emergent themes within paramedics’ lived experience of the community paramedicine role, finding explanations for their experience within the context of the data itself. Responses with thick narrative descriptions were retained for analysis. Incomplete or partial responses were included in the qualitative analysis. Themes were then synthesized, refined, and were validated and triangulated by research team members (GA, AZ, MP, FM, RA). The demographic data was analyzed using descriptive analysis.

Demographics

Of the total survey respondents ( n =434), 79 reported working in a CP role. These respondents were predominantly male (57.0%), had 10 or more years of experience in a paramedic role (77.2%), and were not on modified duty while working in a CP role (86.1%). Respondents reported experience with working in multiple types of CP programs, with the most common type being clinic style programs (68.4%) (see Table 1 ). While the survey was open to all paramedics, the majority of respondents report working in Ontario ( n =61, 77.2%) and 16 respondents (20.3%) did not provide the province in which they worked.

A number of themes and sub-themes emerged from the analysis. Before having worked in a CP program, paramedics broadly identified three unique opportunities and impacts of the CP role: 1) filling gaps in emergency response and the healthcare system at large, 2) providing opportunity for lateral career movement, and 3) creating practice paradigm shifts. After working in a CP role, respondents were able to describe in detail the positive and negative aspects of these three opportunities and impacts. These themes are conceptualized in Fig.  1 .

Diagram depicting the major themes and the positive and negative experiences of paramedics working in a CP role

Theme 1: CP programs can fill important gaps in emergency response and the healthcare system at large, but come with new professional challenges

Before working in a CP role, the majority of respondents viewed the CP role positively. CP was thought to fill important gaps in emergency response and the health system at large. It offered paramedics an opportunity to practice continuity of care by providing prevention and disease management support to older adults who were often inappropriately accessing emergency care services. Paramedics felt that the needs of these individuals were not being fulfilled through traditional emergency response.

There are several individuals I have come across in my career who would have benefitted from a regularly scheduled home visit. ...There are a lot of individuals who require that [health] maintenance… it greatly reduces the workload of Emergency Services and frees them up for what they are actually required for – emergencies. (P.24)

[I thought] it was a vital service that filled gaps in the health care sector that was having excellent results where implemented (P.43)

After working in a CP program, respondents expanded on these initial sentiments. They described delivering a different level of care to their communities that involved stepping into a novel helping role, building relationships with participants and their families, supporting participant health outcomes, and taking part in interprofessional collaboration. This new level of care also came with new professional challenges such as increased emotional burden, managing participant expectations, and conflicts with other health and social service providers.

Sub-theme 1A: being in a helping role

Helping program participants in a CP role was described as novel and different when compared to the emergency response role. Community paramedics worked with participants on a long-term basis and witnessed their health and quality of life improvements. Paramedics enjoyed helping participants who were part of vulnerable or underserved communities. By taking time to listen to these participants and hear their stories, paramedics were able to exercise more compassion and felt less judgemental about participants’ situations. This was a rewarding aspect of the CP role, even having a powerful positive effect on paramedics’ own mental health.

Making a difference in people's lives ... often the people in the community who are ignored and shunned by others. I enjoyed going out in the community, solving problems, working with other services, having the time to LISTEN to patients rather than be worried about my scene time...this is one of the most important things for Paramedic mental health as well. (P.46)

...the knowledge that community paramedics, with sometimes very simple interventions/strategies can make all the difference in people's lives, preventing people from falling through the cracks, or helping them out of that situation…(P.61)

Sub-theme 1B: relationship building with program participants

Paramedics enjoyed building relationships with participants and getting to know them on a personal level, which was not possible in an emergency response role due to limited time on scene during acute calls. Building rapport with participants in the comfort of their homes created a sense of trust that fostered into natural friendships, with some paramedics describing themselves as building a ‘family’ with participants. Others noted that this trust allowed participants to share more details about their health and medical history, allowing paramedics to better assist in their care. Paramedics felt it was important to build these strong social relationships with participants in order to encourage and affect health behaviour changes for participants. Strong relationships with participants allow paramedics to thoroughly follow-up after initial visits and engage in conversations about participants’ short- and long-term health goals. Additionally, although the CP role lacked the adrenaline rush, this increased socialization was described as filling this gap.

The paramedics have built a rapport with [participants] and have really built a family with them.(P.19)

Getting to know [participants] beyond the 30 minutes to an hour we’re used to being with [them in an emergency capacity]. I found as they got to know me, they were more willing to share health concerns they were having and trusted me more. (P.26)

I realized that community paramedicine can be more enjoyable than I thought…where it lacks in adrenaline it makes up for in a social aspect. (P.10)

Seeing how much they trust us and tell us some of their most intimate issues. (P.49)

Sub-theme 1C: emotional burden

While paramedics enjoyed the rapport and relationships built with participants, they also felt they were making greater emotional investments in participants who were in poor health, may have been in a palliative state or dealing with addictions issues. Burnout, attachment fatigue, and difficulty dealing with participant deaths were common experiences. For some paramedics, having built rapport with certain participants meant that they were the primary contact for follow-up care even on their days off, leading to poor work-life balance. Similar to other clinical practitioners who work one-on-one with individuals over a long period of time (e.g., physicians, social workers), one respondent emphasized the need for paramedics in a CP role to be trained to reflect on their experience and make adjustments to how they work with participants.

Can be emotionally draining working over the long term with [participants]... who are very sick, some are palliative, difficult personalities, addictions, etc. Paramedics historically aren’t used to becoming emotionally involved with [people] … but this is difficult not to do when you are seeing people over and over again, and getting involved with their families and other circles of care as well. (P.5)

Couldn't just leave work behind at work like a traditional paramedic could - had to field phone calls on my vacation to help make arrangements for a [participant]... because no other community paramedics were available or as familiar with [them]. (P. 9)

Paramedics are not usually trained, educated, or encouraged to engage in self-reflective or reflective practice and it’s essential for a role like community paramedicine. (P. 34)

Sub-theme 1D: participant outcomes

Paramedics reported a better understanding of the impact of CP programing on participants’ health and well-being. Identifying ‘silent’ health issues before they resulted in emergency transport, making appropriate referrals and reducing 911 calls were some of the positive outcomes. For some, their CP training had become an integral part of their role as a paramedic overall, providing valuable transferable skills that could also be used during an emergency response to further improve health outcomes and close gaps in care. Additionally, beyond identifying health issues and making appropriate referrals, some paramedics felt that CP programs help build a sense of community, which may in turn also improve participant health and well-being. Paramedics particularly appreciated being able to witness these positive outcomes first-hand.

I have realized that community paramedicine has a very broad impact in the community. It is very underappreciated ... It has improved the livelihood of many [participants], and can (with the aid of other resources), assist them [with] their healthcare needs. (P.9)

Seeing them get proper treatment for an illness they did not know they had (i.e. hypertension, diabetes). (P.62)

Seeing the direct benefit of timely and appropriate interventions; having a big impact on people's quality of life, even when palliative (P. 60)

I see that most [people] don't want to go to the hospital and really don't need to. The issue is [that in] our current system people expect to be taken as they think that's the only way a doctor will see them. When they realised someone could see them at home and then refer them to the required service less 911 calls were made. (P.10)

I'm fortunate enough to work in a service that has integrated some aspects of community paramedicine into every response. Being trained to recognize signs in a [participant]'s home that indicate a higher need for home care and offering ways for them to access more care is deeply satisfying. The relief on a person's face when told they could get some home care, or help with day to day chores makes me feel like I made a difference to their quality of life. (P.36)

Seeing how much change we were able to create in a short period of time. Watching the sense of community flourish in the buildings while we were there. (P.49)

Sub-theme 1E: managing participant expectations

Managing the expectations of program participants and trying to elicit health behaviour change was a challenging aspect of the CP role. While seeing positive improvements in participants' lives motivated community paramedics and likely provided them with increased job satisfaction, working with participants who were not able to achieve these positive outcomes in some participants despite working to identify their health issues, and referring and connecting them to services, was a frustrating aspect of the role. Paramedics experienced frustration when participants did not follow their health advice, did not experience improvements in their health, or when participants expressed dissatisfaction with the help they received. Some of this frustration was also directed towards referral agencies who were not able to help the participant.

Some people are noncompliant with their medications or taking the advice of their physicians. It can be frustrating having people come to you for help for the same problems but not be receptive to the advice that you give. (P. 42)

There have been moments of frustration when patients don't follow through or even attempt to follow advice given to them by myself or the agency that has been tasked with giving them assistance. (P. 42)

[Some] clients who are out of the normal scope of practice for a paramedic who are better served by other agencies but those agencies failing the client. Even when you help put services in place for a client they are not happy and want more. (P.7)

Sub-theme 1F: interprofessional collaboration

Paramedics enjoyed working with differenthealthcare providers in their community. Collaboration with different services and providers was felt by paramedics to benefit program participants and improve their career satisfaction. Collaboration with different healthcare providers outside of an emergency paramedicine context made paramedics feel respected and part of a valued healthcare team that was centred around improving participant health. This collaboration provided better coordinated care and also showcased paramedics’ clinical skills beyond that of transport and ambulance-driving to other healthcare professions.

The integration, collaboration, and cooperation with health care and with allied health care providers. We truly make a difference in people's lives, keeping them in their homes longer, safer, and healthier. (P. 67)

Building relationships and pathways with community health care providers and showing them that paramedics are more than just ambulance drivers. (P. 13)

Interacting with the [primary care provider] as we caught early onset [urinary tract infections (UTIs)] and [upper respiratory tract infections] with treatment started based solely on our assessment and conversation via cell phone with [the provider] saving [the participant] stress and cost of travelling to their office. (P. 49)

...Enjoy working more closely with physicians to develop treatment plans.(P.56)

Sub-theme 1G: conflicts with other service providers

While paramedics appreciated the interprofessional collaboration offered by the CP role, they also described conflicts and challenges working with other service providers in the health and social work sector. Paramedics described some service providers as failing and unable to meet participant needs. Overlap between CP activities and other healthcare roles also led to tensions regarding professional boundaries, including physician concerns about CPs diagnosing their patients.

Some doctors did not like paramedics assessing and diagnosing issues (e.g. chest infections, UTIs, and muscular-skeletal injuries). (P. 39)

Don't know if referrals are getting back to [participants]…[There are] already programs in place that have [the] same mandate as CP, like Health Link, forcing medics to do home visits when [participants] don’t need them any more. (P. 12)

Oftentimes, navigating the system was a challenge and often wait times with family doctors or other services were unavoidable. (P. 29)

Theme 2: CP offers paramedics an opportunity for lateral career movement that is free from the demands of shift work and allows them to be connected to the community in a clinical capacity that is slower paced.

Some respondents viewed CP as a new opportunity for lateral career movement within the paramedic profession, ideal for paramedics in the late-stage of their career as it offered less physically demanding work. It was also noted that CP could help keep aging paramedics in the service for a longer period of time and the community could continue benefiting from their skill set.

After having worked in the new role, paramedics described CP as offering greater freedoms compared to the demands of shift work in traditional emergency response roles. CP offered freedom from the demands of shift work by providing better hours, increased autonomy, reduced physical demands, and reduced paramedic stress. For paramedics with longer years of service, this was a welcomed change of pace, with some reporting mental and physical health improvements. Others noted the importance of still being connected to the community in this new role. For others, adjustment to the slower pace of the CP role was difficult due to their preference for emergency work..

I enjoyed being still involved with the community but not having to have the daily physical demands of responding to 911 calls. The role is less stressful and after being a paramedic on the road for 14 years it is an amazing and a welcome change of pace both mentally and physically. (P. 58)

The autonomy to structure my day without the oversight of dispatch or supervisors. (P.63)

[It] would be great for light duty/modified work, could keep aging medics on for [a] longer period of time, good idea for last years of work. (P.51)

I prefer a higher paced environment dealing with acute injuries…(P.30)

Theme 3: Paramedics viewed and experienced the CP role as a practice paradigm shift

Before working in a CP role, paramedics viewed ed CP to be a practice paradigm shift for the profession. For some, this shift in practice was thought to be in opposition to the traditional emergency care role while others felt it was a natural extension of paramedic practice.

I did not feel that was something I would enjoy as it does not have the same adrenaline rush you get when on emergency calls. (P. 13)

[I] felt it was long overdue and a natural extension of what we were already doing in an emergency capacity. (P. 43)

I thought that it would be the next step in emergency medicine, our next frontier. Fire has prevention, we should have health promotion. (P. 26)

After working in a CP role and experiencing the practice paradigm shift first-hand, paramedics noted being largely satisfied by their newly expanded skill set, but also felt that it was a significant learning curve. Paramedics experienced negative sentiments from their peers in traditional emergency response regarding the CP role, highlighting the diverging paradigms between the two roles.

Sub-theme 3A: expanded skill set

The CP program expanded paramedics’ skill set to provide better care to program participants. Some of the new clinical skills described included medication provision, suturing, catheterization, point-of-care testing. Paramedics felt these skills improved their overall ability to perform when returning to emergency response duties. Others felt these new clinical skills were not used or required for the CP role because participants were mainly looking to socialize and interact.

I very much enjoyed the increased scope of practice. I believe that it allows me to provide better care and assist people in the community more than I have before. Moreover, I feel that the additional training has made me a better, and more well-rounded medic overall. (P.34)

I enjoyed the expanded roles (phlebotomy, catheterization, suturing etc)...(P.25).

Sub-theme 3B: learning curve

Working in a CP role was a significant learning curve for some paramedics. Challenges included learning soft skills such as communication, confidence leading sessions with older adults, and learning administrative tasks such as new documentation and computer skills. For paramedics working in both emergency response and CP roles, it was difficult to shift between emergency response protocols and CP protocols. This may have been due to competing priorities between emergency response and CP protocols, such as deciding whether to transport an individual to hospital or keeping an individual at home.

It is a difficult shift in frame of mind to go from 911 assessments to CP assessments and having to switch back into 911 mode when necessary...It can be tough to play the role of both emerg[ency] response and CP. (P.18)

Adapting to new ways, changing the way you do calls, learning the CP documentation and computer programs, being confident with [program participants] and visits, knowing when to communicate with the providers and how. (P. 2)

Much more patient advocacy & health teaching then I had expected. (P.14)

Sub-theme 3C: negative paramedic culture

Community paramedics described a negative paramedic culture that is unaccepting of the CP role and its softer skill set. Lack of buy-in from paramedics in traditional emergency response roles, along with poor understanding of the positive impacts of CP programming, have led to negative perceptions of the role in the paramedic workforce. Community paramedics felt that their emergency response colleagues did not respect their role and felt misunderstood by the profession at large.

Paramedic culture that needs to be educated and changed on the value of CP work. (P.32)

Misunderstood by co-workers and some management. Labeled the tea and cookie brigade. (P.24)

I also found that EMS crews treated CP with very little mutual respect and understanding... (P. 41)

There were a number of positive and negative aspects of the CP role identified by paramedic respondents. While the majority of respondents felt that working in a CP program was a largely positive experience, some expressed dissatisfaction and difficulty adapting to the role. Many positive aspects of the CP role also had unintended negative aspects, particularly as it related to paramedics’ sense of professional identity and their mental health experience when working in the CP role. In order to ensure paramedic job satisfaction and understand the future state of CP programs, these opposing experiences need to be further examined and addressed.

Paramedic professional identity

While many paramedics felt CP was an extension of the paramedic identity, some felt it was a threat to the traditional paramedic identity, removing the defining element of ‘emergency response’ and blurring professional boundaries with other health and social service roles. These diverging experiences and attitudes towards the CP role and its place in the paramedicine profession suggest that there are different fractional identities within the paramedic workforce. Donelley et al. found that emergency service workers often define their role using four domains: caregiving (helping individuals in need), thrill seeking (the adrenaline rush experienced during critical incidents), capacity (having the knowledge, skills, and training to act), and duty (obligation to one’s community and service) [ 7 ]. Paramedics who understand their professional identity as falling within the ‘caregiving’ or ‘duty’ domain may be more accepting of the CP role and understand its fit within their existing paramedic mandates. However, paramedics who understand their professional identity as falling within the ‘thrill seeking’ and ‘capacity to conduct an emergency response’ domain may view CP as not only redefining and expanding the profession, but a threat to the professional identity. Expansion and further resourcing of CP programs may exacerbate divisions and tensions between staff who have different professional motivations if these concerns are not addressed.

Paramedic mental health

Working in a CP role may have also led to some improvements in paramedic mental health. In the traditional emergency response role, paramedics take on shift work, are often exposed to traumatic emergency response incidents, and are limited in their interactions with individuals in their care (single touchpoint and limited time). In contrast, community paramedics experienced more freedom to structure their day, new opportunities to build relationships with program participants due to multiple touchpoints and they experienced reduced physical demands. These experiences likely contributed to a less stressful, flexible work environment which in turn improved mental health for some.

However, increased socialization with participants also introduced new emotional burdens and stressors for some community paramedics. Increased attachment to program participants often made it difficult to deal with their deaths. Participants are often vulnerable populations who face complex health and social issues, such as poverty and addiction. Increased contact with vulnerable populations may increase paramedics’ exposure to vicarious trauma or ‘compassion fatigue,’ which refers to the secondary trauma experienced by working closely with individuals who have experienced trauma first-hand [ 13 , 14 , 15 ]. Vicarious trauma and compassion fatigue can have similar negative impacts on paramedic mental health as first-hand trauma, leading to emotional disturbances, stress, intrusive thoughts, and reduced productivity [ 15 ]. Particularly for community paramedics with a strong orientation towards empathy and caregiving, compassion fatigue may be experienced as a negative or challenging consequence of the role [ 15 ].

Considerations for CP programming

The experiences of paramedics working in a CP program suggests the CP role comes with new opportunities and challenges for staff and the profession at large. Paramedics have broad and diverse understandings of their professional identity, leading some to view CP as a natural fit within the profession while others view it as extending too far beyond the boundaries of paramedicine. This suggests the need for paramedic leaders to clearly define the purpose, mandate, and function of the CP role within the paramedic workforce. Paramedic services interested in implementing and expanding on CP programs to achieve program outcomes such as a reduction in emergency calls and improving participant health outcomes should reflect on their workplace culture and consider the role of their leadership in promoting this role. Champions of CP programming may be identified to better support the workforce’s understanding of this role and how it fits within larger paramedic mandates and objectives. Paramedic leaders who are championing the CP role should consider what factors may contribute to a paramedic feeling alienated in a CP role and how staff are selected to fill this role. In addition, negative perceptions of the CP role as ‘soft’ or ‘easy’ in comparison to emergency response roles needs to be dispelled if community paramedics are to feel valued for their efforts and contributions.

In addition, a number of training supports may need to be provided that take into consideration the new emotional burdens of the CP role. While the CP role may contribute to good mental health by providing a flexible work environment, reducing exposure to traumatic incidents, and allowing paramedics to socialize with individuals in their care, it may also put some paramedics at risk for vicarious trauma and compassion fatigue. Drawing from professions such as social work and counselling, a number of training and professional development supports can be provided to reduce compassion fatigue. Examining compassion fatigue in community paramedics, Cornelius et al. suggests that paramedics should establish boundaries when working with program participants, ensuring that participants recognize the relationship between them and the paramedic is time limited [ 15 ]. Additionally, the caseload of community paramedics should be examined and managed by supervisors in terms of size and complexity of cases [ 15 ]. Other paramedic supports could include resiliency training, counselling services, and stress management workshops [ 15 ]. Training provided should match the type and scope of the CP program the paramedic is working in and their work environment.

Limitations

A limitation of this study is that it used an online survey with predefined open-ended questions to extract information on lived experience rather than a semi-structured interview. This approach prevented researchers from prompting paramedics on their responses and engaging in discussion to obtain a deeper description of their experiences. However, the survey approach allowed the research team to obtain responses from a large number of paramedics and collect responses from across Ontario. Another limitation is that due to the inherent nature of the survey link, it cannot be guaranteed that unique responses were captured. However, multiple entries from respondents are unlikely.

Future research should attempt to engage paramedics on the issues described in this paper and should consider how the relative impacts of working in different types of CP programs (e.g., clinic style programs, at home visits, etc.) may affect paramedic experiences. This approach may provide more detailed data to inform future CP training and program design.

This paper found paramedics who have worked in a CP role, reported that the role offered opportunities to fill a gap in the healthcare system, to move laterally within the paramedic profession, and to create a practice paradigm shift within the profession. Most described having positive perceptions of their professional identity after working as a CP, as they were able to fulfill stepping into a helping role to a greater extent. In contrast, some came out of the experience with negative perceptions. It is important for CP program planners to consider these diverse experiences when planning for the expansion of these programs. A workforce culture that views CP programming negatively and as potentially eroding the traditional paramedic identity may work to hinder the program’s ability to achieve positive outcomes such as a reduction in emergency calls and an improvement in participant health outcomes. Incorporating the CP role within larger paramedic mandates and objectives by paramedic leadership may support this work, as well as CP champions who clarify the role and impacts of CP to staff.

Availability of data and materials

The data that support the findings of this study are not publicly available due to them containing information that could compromise participant privacy. De-identified, limited data will be shared by the corresponding author upon reasonable request.

Abbreviations

• Community Paramedicine

Occupational Stress Injury

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Acknowledgements

We would like to acknowledge the assistance of Brent McLeod and the OPA (Ontario Paramedic Association).

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Aarani Paramalingam, Andrea Ziesmann, Melissa Pirrie, Francine Marzanek, Ricardo Angeles & Gina Agarwal

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The study was conceived of by GA, RA, FM and AP, AZ, GA, RA, FM and MP analysed the data. AP drafted the article under the supervision of GA and all authors were involved in editing to produce a final draft. All authors read and approved the final manuscript.

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Respondents were informed about the purpose of the research study and informed consent was obtained. This study was conducted in accordance with the Declaration of Helsinki and was approved by the Hamilton Integrated Research Ethics Board (Project #13-466).

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Paramalingam, A., Ziesmann, A., Pirrie, M. et al. Paramedic attitudes and experiences working as a community paramedic: a qualitative survey. BMC Emerg Med 24 , 50 (2024). https://doi.org/10.1186/s12873-024-00972-5

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Received : 15 February 2023

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DOI : https://doi.org/10.1186/s12873-024-00972-5

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Industry Payments to US Physicians by Specialty and Product Type

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Despite evidence that financial conflicts of interest may influence physician prescribing and may damage patients’ trust in medical professionals, 1 - 3 such relationships remain pervasive. 4 The Physician Payments Sunshine Act led to the creation of the Open Payments database in August 2013, a repository of industry payments to health care professionals. 5 We examined the distribution of payments within and across specialties and the medical products associated with the largest total payments.

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Sayed A , Ross JS , Mandrola J , Lehmann LS , Foy AJ. Industry Payments to US Physicians by Specialty and Product Type. JAMA. Published online March 28, 2024. doi:10.1001/jama.2024.1989

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