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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: An Overview

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Qualitative research is one of the most commonly used types of research and methodology in the social sciences. Unfortunately, qualitative research is commonly misunderstood. In this chapter, we describe and explain the misconceptions surrounding qualitative research enterprise, why researchers need to care about when using qualitative research, the characteristics of qualitative research, and review the paradigms in qualitative research.

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Qualitative research is defined as the practice used to study things –– individuals and organizations and their reasons, opinions, and motivations, beliefs in their natural settings. It involves an observer (a researcher) who is located in the field , who transforms the world into a series of representations such as fieldnotes, interviews, conversations, photographs, recordings and memos (Denzin and Lincoln 2011 ). Many researchers employ qualitative research for exploratory purpose while others use it for ‘quasi’ theory testing approach. Qualitative research is a broad umbrella of research methodologies that encompasses grounded theory (Glaser and Strauss 2017 ; Strauss and Corbin 1990 ), case study (Flyvbjerg 2006 ; Yin 2003 ), phenomenology (Sanders 1982 ), discourse analysis (Fairclough 2003 ; Wodak and Meyer 2009 ), ethnography (Geertz 1973 ; Garfinkel 1967 ), and netnography (Kozinets 2002 ), among others. Qualitative research is often synonymous with ‘case study research’ because ‘case study’ primarily uses (but not always) qualitative data.

The quality standards or evaluation criteria of qualitative research comprises: (1) credibility (that a researcher can provide confidence in his/her findings), (2) transferability (that results are more plausible when transported to a highly similar contexts), (3) dependability (that errors have been minimized, proper documentation is provided), and (4) confirmability (that conclusions are internally consistent and supported by data) (see Lincoln and Guba 1985 ).

We classify research into a continuum of theory building — >   theory elaboration — >   theory testing . Theory building is also known as theory exploration. Theory elaboration refers to the use of qualitative data and a method to seek “confirmation” of the relationships among variables or processes or mechanisms of a social reality (Bartunek and Rynes 2015 ).

In the context of qualitative research, theory/ies usually refer(s) to conceptual model(s) or framework(s) that explain the relationships among a set of variables or processes that explain a social phenomenon. Theory or theories could also refer to general ideas or frameworks (e.g., institutional theory, emancipation theory, or identity theory) that are reviewed as background knowledge prior to the commencement of a qualitative research project.

For example, a qualitative research can ask the following question: “How can institutional change succeed in social contexts that are dominated by organized crime?” (Vaccaro and Palazzo 2015 ).

We have witnessed numerous cases in which committed positivist methodologists were asked to review qualitative papers, and they used a survey approach to assess the quality of an interpretivist work. This reviewers’ fallacy is dangerous and hampers the progress of a field of research. Editors must be cognizant of such fallacy and avoid it.

A social enterprises (SE) is an organization that combines social welfare and commercial logics (Doherty et al. 2014 ), or that uses business principles to address social problems (Mair and Marti 2006 ); thus, qualitative research that reports that ‘social impact’ is important for SEs is too descriptive and, arguably, tautological. It is not uncommon to see authors submitting purely descriptive papers to scholarly journals.

Some qualitative researchers have conducted qualitative work using primarily a checklist (ticking the boxes) to show the presence or absence of variables, as if it were a survey-based study. This is utterly inappropriate for a qualitative work. A qualitative work needs to show the richness and depth of qualitative findings. Nevertheless, it is acceptable to use such checklists as supplementary data if a study involves too many informants or variables of interest, or the data is too complex due to its longitudinal nature (e.g., a study that involves 15 cases observed and involving 59 interviews with 33 informants within a 7-year fieldwork used an excel sheet to tabulate the number of events that occurred as supplementary data to the main analysis; see Chandra 2017a , b ).

As mentioned earlier, there are different types of qualitative research. Thus, a qualitative researcher will customize the data collection process to fit the type of research being conducted. For example, for researchers using ethnography, the primary data will be in the form of photos and/or videos and interviews; for those using netnography, the primary data will be internet-based textual data. Interview data is perhaps the most common type of data used across all types of qualitative research designs and is often synonymous with qualitative research.

The purpose of qualitative research is to provide an explanation , not merely a description and certainly not a prediction (which is the realm of quantitative research). However, description is needed to illustrate qualitative data collected, and usually researchers describe their qualitative data by inserting a number of important “informant quotes” in the body of a qualitative research report.

We advise qualitative researchers to adhere to one approach to avoid any epistemological and ontological mismatch that may arise among different camps in qualitative research. For instance, mixing a positivist with a constructivist approach in qualitative research frequently leads to unnecessary criticism and even rejection from journal editors and reviewers; it shows a lack of methodological competence or awareness of one’s epistemological position.

Analytical generalization is not generalization to some defined population that has been sampled, but to a “theory” of the phenomenon being studied, a theory that may have much wider applicability than the particular case studied (Yin 2003 ).

There are different types of contributions. Typically, a researcher is expected to clearly articulate the theoretical contributions for a qualitative work submitted to a scholarly journal. Other types of contributions are practical (or managerial ), common for business/management journals, and policy , common for policy related journals.

There is ongoing debate on whether a template for qualitative research is desirable or necessary, with one camp of scholars (the pluralistic critical realists) that advocates a pluralistic approaches to qualitative research (“qualitative research should not follow a particular template or be prescriptive in its process”) and the other camps are advocating for some form of consensus via the use of particular approaches (e.g., the Eisenhardt or Gioia Approach, etc.). However, as shown in Table 1.1 , even the pluralistic critical realism in itself is a template and advocates an alternative form of consensus through the use of diverse and pluralistic approaches in doing qualitative research.

Alvesson, M., & Kärreman, D. (2007). Constructing mystery: Empirical matters in theory development. Academy of Management Review, 32 (4), 1265–1281.

Article   Google Scholar  

Bartunek, J. M., & Rynes, S. L. (2015). Qualitative research: It just keeps getting more interesting! In Handbook of qualitative organizational research (pp. 41–55). New York: Routledge.

Google Scholar  

Brinkmann, S. (2018). Philosophies of qualitative research . New York: Oxford University Press.

Bucher, S., & Langley, A. (2016). The interplay of reflective and experimental spaces in interrupting and reorienting routine dynamics. Organization Science, 27 (3), 594–613.

Chandra, Y. (2017a). A time-based process model of international entrepreneurial opportunity evaluation. Journal of International Business Studies, 48 (4), 423–451.

Chandra, Y. (2017b). Social entrepreneurship as emancipatory work. Journal of Business Venturing, 32 (6), 657–673.

Corley, K. G., & Gioia, D. A. (2004). Identity ambiguity and change in the wake of a corporate spin-off. Administrative Science Quarterly, 49 (2), 173–208.

Cornelissen, J. P. (2017). Preserving theoretical divergence in management research: Why the explanatory potential of qualitative research should be harnessed rather than suppressed. Journal of Management Studies, 54 (3), 368–383.

Denis, J. L., Lamothe, L., & Langley, A. (2001). The dynamics of collective leadership and strategic change in pluralistic organizations. Academy of Management Journal, 44 (4), 809–837.

Denzin, N. K., & Lincoln, Y. S. (2011). Introduction. In N. K. Denzin & Y. S. Lincoln (Eds.), The Sage handbook of qualitative research (4th ed.). Thousand Oaks: Sage.

Doherty, B., Haugh, H., & Lyon, F. (2014). Social enterprises as hybrid organizations: A review and research agenda. International Journal of Management Reviews, 16 (4), 417–436.

Dubé, L., & Paré, G. (2003). Rigor in information systems positivist case research: Current practices, trends, and recommendations. MIS Quarterly, 27 (4), 597–636.

Easton, G. (2010). Critical realism in case study research. Industrial Marketing Management, 39 (1), 118–128.

Eisenhardt, K. M. (1989a). Building theories from case study research. Academy of Management Review, 14 (4), 532–550.

Eisenhardt, K. M. (1989b). Making fast strategic decisions in high-velocity environments. Academy of Management Journal, 32 (3), 543–576.

Fairclough, N. (2003). Analysing discourse: Textual analysis for social research . Abingdon: Routledge.

Book   Google Scholar  

Flyvbjerg, B. (2006). Five misunderstandings about case-study research. Qualitative Inquiry, 12 (2), 219–245.

Friese, S. (2011). Using ATLAS.ti for analyzing the financial crisis data [67 paragraphs]. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 12 (1), Art. 39. http://nbn-resolving.de/urn:nbn:de:0114-fqs1101397

Garfinkel, H. (1967). Studies in ethnomethodology . Malden: Blackwell Publishers.

Geertz, C. (1973). Interpretation of cultures . New York: Basic Books.

Gehman, J., Glaser, V. L., Eisenhardt, K. M., Gioia, D., Langley, A., & Corley, K. G. (2017). Finding theory–method fit: A comparison of three qualitative approaches to theory building. Journal of Management Inquiry, 27 , 284–300. in press.

Gioia, D. A. (1992). Pinto fires and personal ethics: A script analysis of missed opportunities. Journal of Business Ethics, 11 (5–6), 379–389.

Gioia, D. A. (2007). Individual epistemology – Interpretive wisdom. In E. H. Kessler & J. R. Bailey (Eds.), The handbook of organizational and managerial wisdom (pp. 277–294). Thousand Oaks: Sage.

Chapter   Google Scholar  

Gioia, D. (2019). If I had a magic wand: Reflections on developing a systematic approach to qualitative research. In B. Boyd, R. Crook, J. Le, & A. Smith (Eds.), Research methodology in strategy and management . https://books.emeraldinsight.com/page/detail/Standing-on-the-Shoulders-of-Giants/?k=9781787563360

Gioia, D. A., & Chittipeddi, K. (1991). Sensemaking and sensegiving in strategic change initiation. Strategic Management Journal, 12 (6), 433–448.

Gioia, D. A., Price, K. N., Hamilton, A. L., & Thomas, J. B. (2010). Forging an identity: An insider-outsider study of processes involved in the formation of organizational identity. Administrative Science Quarterly, 55 (1), 1–46.

Gioia, D. A., Corley, K. G., & Hamilton, A. L. (2013). Seeking qualitative rigor in inductive research: Notes on the Gioia methodology. Organizational Research Methods, 16 (1), 15–31.

Glaser, B. G., & Strauss, A. L. (2017). Discovery of grounded theory: Strategies for qualitative research . New York: Routledge.

Graebner, M. E., & Eisenhardt, K. M. (2004). The seller’s side of the story: Acquisition as courtship and governance as syndicate in entrepreneurial firms. Administrative Science Quarterly, 49 (3), 366–403.

Grayson, K., & Shulman, D. (2000). Indexicality and the verification function of irreplaceable possessions: A semiotic analysis. Journal of Consumer Research, 27 (1), 17–30.

Hunt, S. D. (1991). Positivism and paradigm dominance in consumer research: Toward critical pluralism and rapprochement. Journal of Consumer Research, 18 (1), 32–44.

King, G., Keohane, R. O., & Verba, S. (1994). Designing social inquiry: Scientific inference in qualitative research . Princeton: Princeton University Press.

Kozinets, R. V. (2002). The field behind the screen: Using netnography for marketing research in online communities. Journal of Marketing Research, 39 (1), 61–72.

Langley, A. (1988). The roles of formal strategic planning. Long Range Planning, 21 (3), 40–50.

Langley, A., & Abdallah, C. (2011). Templates and turns in qualitative studies of strategy and management. In Building methodological bridges (pp. 201–235). Bingley: Emerald Group Publishing Limited.

Langley, A., Golden-Biddle, K., Reay, T., Denis, J. L., Hébert, Y., Lamothe, L., & Gervais, J. (2012). Identity struggles in merging organizations: Renegotiating the sameness–difference dialectic. The Journal of Applied Behavioral Science, 48 (2), 135–167.

Langley, A. N. N., Smallman, C., Tsoukas, H., & Van de Ven, A. H. (2013). Process studies of change in organization and management: Unveiling temporality, activity, and flow. Academy of Management Journal, 56 (1), 1–13.

Lin, A. C. (1998). Bridging positivist and interpretivist approaches to qualitative methods. Policy Studies Journal, 26 (1), 162–180.

Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry . Beverly Hills: Sage.

Mair, J., & Marti, I. (2006). Social entrepreneurship research: A source of explanation, prediction, and delight. Journal of World Business, 41 (1), 36–44.

Nag, R., Corley, K. G., & Gioia, D. A. (2007). The intersection of organizational identity, knowledge, and practice: Attempting strategic change via knowledge grafting. Academy of Management Journal, 50 (4), 821–847.

Ozcan, P., & Eisenhardt, K. M. (2009). Origin of alliance portfolios: Entrepreneurs, network strategies, and firm performance. Academy of Management Journal, 52 (2), 246–279.

Prasad, P. (2018). Crafting qualitative research: Beyond positivist traditions . New York: Taylor & Francis.

Pratt, M. G. (2009). From the editors: For the lack of a boilerplate: Tips on writing up (and reviewing) qualitative research. Academy of Management Journal, 52 (5), 856–862.

Ramoglou, S., & Tsang, E. W. (2016). A realist perspective of entrepreneurship: Opportunities as propensities. Academy of Management Review, 41 (3), 410–434.

Sanders, P. (1982). Phenomenology: A new way of viewing organizational research. Academy of Management Review, 7 (3), 353–360.

Sobh, R., & Perry, C. (2006). Research design and data analysis in realism research. European Journal of Marketing, 40 (11/12), 1194–1209.

Stake, R. E. (2010). Qualitative research: Studying how things work . New York: Guilford Press.

Strauss, A., & Corbin, J. M. (1990). Basics of qualitative research: Grounded theory procedures and techniques . Thousand Oaks: Sage.

Vaccaro, A., & Palazzo, G. (2015). Values against violence: Institutional change in societies dominated by organized crime. Academy of Management Journal, 58 (4), 1075–1101.

Weick, K. E. (1989). Theory construction as disciplined imagination. Academy of Management Review, 14 (4), 516–531.

Welch, C. L., Welch, D. E., & Hewerdine, L. (2008). Gender and export behaviour: Evidence from women-owned enterprises. Journal of Business Ethics, 83 (1), 113–126.

Welch, C., Piekkari, R., Plakoyiannaki, E., & Paavilainen-Mäntymäki, E. (2011). Theorising from case studies: Towards a pluralist future for international business research. Journal of International Business Studies, 42 (5), 740–762.

Wodak, R., & Meyer, M. (Eds.). (2009). Methods for critical discourse analysis . London: Sage.

Yin, R. K. (1981). Life histories of innovations: How new practices become routinized. Public Administration Review, 41 , 21–28.

Yin, R. (2003). Case study research: Design and methods . Thousand Oaks: Sage.

Young, R. A., & Collin, A. (2004). Introduction: Constructivism and social constructionism in the career field. Journal of Vocational Behavior, 64 (3), 373–388.

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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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How to use and assess qualitative research methods

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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

Philipsen, H., & Vernooij-Dassen, M. (2007). Kwalitatief onderzoek: nuttig, onmisbaar en uitdagend. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Qualitative research: useful, indispensable and challenging. In: Qualitative research: Practical methods for medical practice (pp. 5–12). Houten: Bohn Stafleu van Loghum.

Chapter   Google Scholar  

Punch, K. F. (2013). Introduction to social research: Quantitative and qualitative approaches . London: Sage.

Kelly, J., Dwyer, J., Willis, E., & Pekarsky, B. (2014). Travelling to the city for hospital care: Access factors in country aboriginal patient journeys. Australian Journal of Rural Health, 22 (3), 109–113.

Article   Google Scholar  

Nilsen, P., Ståhl, C., Roback, K., & Cairney, P. (2013). Never the twain shall meet? - a comparison of implementation science and policy implementation research. Implementation Science, 8 (1), 1–12.

Howick J, Chalmers I, Glasziou, P., Greenhalgh, T., Heneghan, C., Liberati, A., Moschetti, I., Phillips, B., & Thornton, H. (2011). The 2011 Oxford CEBM evidence levels of evidence (introductory document) . Oxford Center for Evidence Based Medicine. https://www.cebm.net/2011/06/2011-oxford-cebm-levels-evidence-introductory-document/ .

Eakin, J. M. (2016). Educating critical qualitative health researchers in the land of the randomized controlled trial. Qualitative Inquiry, 22 (2), 107–118.

May, A., & Mathijssen, J. (2015). Alternatieven voor RCT bij de evaluatie van effectiviteit van interventies!? Eindrapportage. In Alternatives for RCTs in the evaluation of effectiveness of interventions!? Final report .

Google Scholar  

Berwick, D. M. (2008). The science of improvement. Journal of the American Medical Association, 299 (10), 1182–1184.

Article   CAS   Google Scholar  

Christ, T. W. (2014). Scientific-based research and randomized controlled trials, the “gold” standard? Alternative paradigms and mixed methodologies. Qualitative Inquiry, 20 (1), 72–80.

Lamont, T., Barber, N., Jd, P., Fulop, N., Garfield-Birkbeck, S., Lilford, R., Mear, L., Raine, R., & Fitzpatrick, R. (2016). New approaches to evaluating complex health and care systems. BMJ, 352:i154.

Drabble, S. J., & O’Cathain, A. (2015). Moving from Randomized Controlled Trials to Mixed Methods Intervention Evaluation. In S. Hesse-Biber & R. B. Johnson (Eds.), The Oxford Handbook of Multimethod and Mixed Methods Research Inquiry (pp. 406–425). London: Oxford University Press.

Chambers, D. A., Glasgow, R. E., & Stange, K. C. (2013). The dynamic sustainability framework: Addressing the paradox of sustainment amid ongoing change. Implementation Science : IS, 8 , 117.

Hak, T. (2007). Waarnemingsmethoden in kwalitatief onderzoek. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Observation methods in qualitative research] (pp. 13–25). Houten: Bohn Stafleu van Loghum.

Russell, C. K., & Gregory, D. M. (2003). Evaluation of qualitative research studies. Evidence Based Nursing, 6 (2), 36–40.

Fossey, E., Harvey, C., McDermott, F., & Davidson, L. (2002). Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry, 36 , 717–732.

Yanow, D. (2000). Conducting interpretive policy analysis (Vol. 47). Thousand Oaks: Sage University Papers Series on Qualitative Research Methods.

Shenton, A. K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22 , 63–75.

van der Geest, S. (2006). Participeren in ziekte en zorg: meer over kwalitatief onderzoek. Huisarts en Wetenschap, 49 (4), 283–287.

Hijmans, E., & Kuyper, M. (2007). Het halfopen interview als onderzoeksmethode. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [The half-open interview as research method (pp. 43–51). Houten: Bohn Stafleu van Loghum.

Jansen, H. (2007). Systematiek en toepassing van de kwalitatieve survey. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Systematics and implementation of the qualitative survey (pp. 27–41). Houten: Bohn Stafleu van Loghum.

Pv, R., & Peremans, L. (2007). Exploreren met focusgroepgesprekken: de ‘stem’ van de groep onder de loep. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Exploring with focus group conversations: the “voice” of the group under the magnifying glass (pp. 53–64). Houten: Bohn Stafleu van Loghum.

Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Oncology Nursing Forum, 41 (5), 545–547.

Boeije H: Analyseren in kwalitatief onderzoek: Denken en doen, [Analysis in qualitative research: Thinking and doing] vol. Den Haag Boom Lemma uitgevers; 2012.

Hunter, A., & Brewer, J. (2015). Designing Multimethod Research. In S. Hesse-Biber & R. B. Johnson (Eds.), The Oxford Handbook of Multimethod and Mixed Methods Research Inquiry (pp. 185–205). London: Oxford University Press.

Archibald, M. M., Radil, A. I., Zhang, X., & Hanson, W. E. (2015). Current mixed methods practices in qualitative research: A content analysis of leading journals. International Journal of Qualitative Methods, 14 (2), 5–33.

Creswell, J. W., & Plano Clark, V. L. (2011). Choosing a Mixed Methods Design. In Designing and Conducting Mixed Methods Research . Thousand Oaks: SAGE Publications.

Mays, N., & Pope, C. (2000). Assessing quality in qualitative research. BMJ, 320 (7226), 50–52.

O'Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014). Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine : Journal of the Association of American Medical Colleges, 89 (9), 1245–1251.

Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & Jinks, C. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality and Quantity, 52 (4), 1893–1907.

Moser, A., & Korstjens, I. (2018). Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. European Journal of General Practice, 24 (1), 9–18.

Marlett, N., Shklarov, S., Marshall, D., Santana, M. J., & Wasylak, T. (2015). Building new roles and relationships in research: A model of patient engagement research. Quality of Life Research : an international journal of quality of life aspects of treatment, care and rehabilitation, 24 (5), 1057–1067.

Demian, M. N., Lam, N. N., Mac-Way, F., Sapir-Pichhadze, R., & Fernandez, N. (2017). Opportunities for engaging patients in kidney research. Canadian Journal of Kidney Health and Disease, 4 , 2054358117703070–2054358117703070.

Noyes, J., McLaughlin, L., Morgan, K., Roberts, A., Stephens, M., Bourne, J., Houlston, M., Houlston, J., Thomas, S., Rhys, R. G., et al. (2019). Designing a co-productive study to overcome known methodological challenges in organ donation research with bereaved family members. Health Expectations . 22(4):824–35.

Piil, K., Jarden, M., & Pii, K. H. (2019). Research agenda for life-threatening cancer. European Journal Cancer Care (Engl), 28 (1), e12935.

Hofmann, D., Ibrahim, F., Rose, D., Scott, D. L., Cope, A., Wykes, T., & Lempp, H. (2015). Expectations of new treatment in rheumatoid arthritis: Developing a patient-generated questionnaire. Health Expectations : an international journal of public participation in health care and health policy, 18 (5), 995–1008.

Jun, M., Manns, B., Laupacis, A., Manns, L., Rehal, B., Crowe, S., & Hemmelgarn, B. R. (2015). Assessing the extent to which current clinical research is consistent with patient priorities: A scoping review using a case study in patients on or nearing dialysis. Canadian Journal of Kidney Health and Disease, 2 , 35.

Elsie Baker, S., & Edwards, R. (2012). How many qualitative interviews is enough? In National Centre for Research Methods Review Paper . National Centre for Research Methods. http://eprints.ncrm.ac.uk/2273/4/how_many_interviews.pdf .

Sandelowski, M. (1995). Sample size in qualitative research. Research in Nursing & Health, 18 (2), 179–183.

Sim, J., Saunders, B., Waterfield, J., & Kingstone, T. (2018). Can sample size in qualitative research be determined a priori? International Journal of Social Research Methodology, 21 (5), 619–634.

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Qualitative vs Quantitative Research Methods & Data Analysis

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What is the difference between quantitative and qualitative?

The main difference between quantitative and qualitative research is the type of data they collect and analyze.

Quantitative research collects numerical data and analyzes it using statistical methods. The aim is to produce objective, empirical data that can be measured and expressed in numerical terms. Quantitative research is often used to test hypotheses, identify patterns, and make predictions.

Qualitative research , on the other hand, collects non-numerical data such as words, images, and sounds. The focus is on exploring subjective experiences, opinions, and attitudes, often through observation and interviews.

Qualitative research aims to produce rich and detailed descriptions of the phenomenon being studied, and to uncover new insights and meanings.

Quantitative data is information about quantities, and therefore numbers, and qualitative data is descriptive, and regards phenomenon which can be observed but not measured, such as language.

What Is Qualitative Research?

Qualitative research is the process of collecting, analyzing, and interpreting non-numerical data, such as language. Qualitative research can be used to understand how an individual subjectively perceives and gives meaning to their social reality.

Qualitative data is non-numerical data, such as text, video, photographs, or audio recordings. This type of data can be collected using diary accounts or in-depth interviews and analyzed using grounded theory or thematic analysis.

Qualitative research is multimethod in focus, involving an interpretive, 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. Denzin and Lincoln (1994, p. 2)

Interest in qualitative data came about as the result of the dissatisfaction of some psychologists (e.g., Carl Rogers) with the scientific study of psychologists such as behaviorists (e.g., Skinner ).

Since psychologists study people, the traditional approach to science is not seen as an appropriate way of carrying out research since it fails to capture the totality of human experience and the essence of being human.  Exploring participants’ experiences is known as a phenomenological approach (re: Humanism ).

Qualitative research is primarily concerned with meaning, subjectivity, and lived experience. The goal is to understand the quality and texture of people’s experiences, how they make sense of them, and the implications for their lives.

Qualitative research aims to understand the social reality of individuals, groups, and cultures as nearly as possible as participants feel or live it. Thus, people and groups are studied in their natural setting.

Some examples of qualitative research questions are provided, such as what an experience feels like, how people talk about something, how they make sense of an experience, and how events unfold for people.

Research following a qualitative approach is exploratory and seeks to explain ‘how’ and ‘why’ a particular phenomenon, or behavior, operates as it does in a particular context. It can be used to generate hypotheses and theories from the data.

Qualitative Methods

There are different types of qualitative research methods, including diary accounts, in-depth interviews , documents, focus groups , case study research , and ethnography.

The results of qualitative methods provide a deep understanding of how people perceive their social realities and in consequence, how they act within the social world.

The researcher has several methods for collecting empirical materials, ranging from the interview to direct observation, to the analysis of artifacts, documents, and cultural records, to the use of visual materials or personal experience. Denzin and Lincoln (1994, p. 14)

Here are some examples of qualitative data:

Interview transcripts : Verbatim records of what participants said during an interview or focus group. They allow researchers to identify common themes and patterns, and draw conclusions based on the data. Interview transcripts can also be useful in providing direct quotes and examples to support research findings.

Observations : The researcher typically takes detailed notes on what they observe, including any contextual information, nonverbal cues, or other relevant details. The resulting observational data can be analyzed to gain insights into social phenomena, such as human behavior, social interactions, and cultural practices.

Unstructured interviews : generate qualitative data through the use of open questions.  This allows the respondent to talk in some depth, choosing their own words.  This helps the researcher develop a real sense of a person’s understanding of a situation.

Diaries or journals : Written accounts of personal experiences or reflections.

Notice that qualitative data could be much more than just words or text. Photographs, videos, sound recordings, and so on, can be considered qualitative data. Visual data can be used to understand behaviors, environments, and social interactions.

Qualitative Data Analysis

Qualitative research is endlessly creative and interpretive. The researcher does not just leave the field with mountains of empirical data and then easily write up his or her findings.

Qualitative interpretations are constructed, and various techniques can be used to make sense of the data, such as content analysis, grounded theory (Glaser & Strauss, 1967), thematic analysis (Braun & Clarke, 2006), or discourse analysis.

For example, thematic analysis is a qualitative approach that involves identifying implicit or explicit ideas within the data. Themes will often emerge once the data has been coded .

Key Features

• Events can be understood adequately only if they are seen in context. Therefore, a qualitative researcher immerses her/himself in the field, in natural surroundings. The contexts of inquiry are not contrived; they are natural. Nothing is predefined or taken for granted.
• Qualitative researchers want those who are studied to speak for themselves, to provide their perspectives in words and other actions. Therefore, qualitative research is an interactive process in which the persons studied teach the researcher about their lives.
• The qualitative researcher is an integral part of the data; without the active participation of the researcher, no data exists.
• The study’s design evolves during the research and can be adjusted or changed as it progresses. For the qualitative researcher, there is no single reality. It is subjective and exists only in reference to the observer.
• The theory is data-driven and emerges as part of the research process, evolving from the data as they are collected.

Limitations of Qualitative Research

• Because of the time and costs involved, qualitative designs do not generally draw samples from large-scale data sets.
• The problem of adequate validity or reliability is a major criticism. Because of the subjective nature of qualitative data and its origin in single contexts, it is difficult to apply conventional standards of reliability and validity. For example, because of the central role played by the researcher in the generation of data, it is not possible to replicate qualitative studies.
• Also, contexts, situations, events, conditions, and interactions cannot be replicated to any extent, nor can generalizations be made to a wider context than the one studied with confidence.
• The time required for data collection, analysis, and interpretation is lengthy. Analysis of qualitative data is difficult, and expert knowledge of an area is necessary to interpret qualitative data. Great care must be taken when doing so, for example, looking for mental illness symptoms.

Advantages of Qualitative Research

• Because of close researcher involvement, the researcher gains an insider’s view of the field. This allows the researcher to find issues that are often missed (such as subtleties and complexities) by the scientific, more positivistic inquiries.
• Qualitative descriptions can be important in suggesting possible relationships, causes, effects, and dynamic processes.
• Qualitative analysis allows for ambiguities/contradictions in the data, which reflect social reality (Denscombe, 2010).
• Qualitative research uses a descriptive, narrative style; this research might be of particular benefit to the practitioner as she or he could turn to qualitative reports to examine forms of knowledge that might otherwise be unavailable, thereby gaining new insight.

What Is Quantitative Research?

Quantitative research involves the process of objectively collecting and analyzing numerical data to describe, predict, or control variables of interest.

The goals of quantitative research are to test causal relationships between variables , make predictions, and generalize results to wider populations.

Quantitative researchers aim to establish general laws of behavior and phenomenon across different settings/contexts. Research is used to test a theory and ultimately support or reject it.

Quantitative Methods

Experiments typically yield quantitative data, as they are concerned with measuring things.  However, other research methods, such as controlled observations and questionnaires , can produce both quantitative information.

For example, a rating scale or closed questions on a questionnaire would generate quantitative data as these produce either numerical data or data that can be put into categories (e.g., “yes,” “no” answers).

Experimental methods limit how research participants react to and express appropriate social behavior.

Findings are, therefore, likely to be context-bound and simply a reflection of the assumptions that the researcher brings to the investigation.

There are numerous examples of quantitative data in psychological research, including mental health. Here are a few examples:

Another example is the Experience in Close Relationships Scale (ECR), a self-report questionnaire widely used to assess adult attachment styles .

The ECR provides quantitative data that can be used to assess attachment styles and predict relationship outcomes.

Neuroimaging data : Neuroimaging techniques, such as MRI and fMRI, provide quantitative data on brain structure and function.

This data can be analyzed to identify brain regions involved in specific mental processes or disorders.

For example, the Beck Depression Inventory (BDI) is a clinician-administered questionnaire widely used to assess the severity of depressive symptoms in individuals.

The BDI consists of 21 questions, each scored on a scale of 0 to 3, with higher scores indicating more severe depressive symptoms. 

Quantitative Data Analysis

Statistics help us turn quantitative data into useful information to help with decision-making. We can use statistics to summarize our data, describing patterns, relationships, and connections. Statistics can be descriptive or inferential.

Descriptive statistics help us to summarize our data. In contrast, inferential statistics are used to identify statistically significant differences between groups of data (such as intervention and control groups in a randomized control study).

• Quantitative researchers try to control extraneous variables by conducting their studies in the lab.
• The research aims for objectivity (i.e., without bias) and is separated from the data.
• The design of the study is determined before it begins.
• For the quantitative researcher, the reality is objective, exists separately from the researcher, and can be seen by anyone.
• Research is used to test a theory and ultimately support or reject it.

Limitations of Quantitative Research

• Context: Quantitative experiments do not take place in natural settings. In addition, they do not allow participants to explain their choices or the meaning of the questions they may have for those participants (Carr, 1994).
• Researcher expertise: Poor knowledge of the application of statistical analysis may negatively affect analysis and subsequent interpretation (Black, 1999).
• Variability of data quantity: Large sample sizes are needed for more accurate analysis. Small-scale quantitative studies may be less reliable because of the low quantity of data (Denscombe, 2010). This also affects the ability to generalize study findings to wider populations.
• Confirmation bias: The researcher might miss observing phenomena because of focus on theory or hypothesis testing rather than on the theory of hypothesis generation.

Advantages of Quantitative Research

• Scientific objectivity: Quantitative data can be interpreted with statistical analysis, and since statistics are based on the principles of mathematics, the quantitative approach is viewed as scientifically objective and rational (Carr, 1994; Denscombe, 2010).
• Useful for testing and validating already constructed theories.
• Rapid analysis: Sophisticated software removes much of the need for prolonged data analysis, especially with large volumes of data involved (Antonius, 2003).
• Replication: Quantitative data is based on measured values and can be checked by others because numerical data is less open to ambiguities of interpretation.
• Hypotheses can also be tested because of statistical analysis (Antonius, 2003).

Antonius, R. (2003). Interpreting quantitative data with SPSS . Sage.

Black, T. R. (1999). Doing quantitative research in the social sciences: An integrated approach to research design, measurement and statistics . Sage.

Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology . Qualitative Research in Psychology , 3, 77–101.

Carr, L. T. (1994). The strengths and weaknesses of quantitative and qualitative research : what method for nursing? Journal of advanced nursing, 20(4) , 716-721.

Denscombe, M. (2010). The Good Research Guide: for small-scale social research. McGraw Hill.

Denzin, N., & Lincoln. Y. (1994). Handbook of Qualitative Research. Thousand Oaks, CA, US: Sage Publications Inc.

Glaser, B. G., Strauss, A. L., & Strutzel, E. (1968). The discovery of grounded theory; strategies for qualitative research. Nursing research, 17(4) , 364.

Minichiello, V. (1990). In-Depth Interviewing: Researching People. Longman Cheshire.

Punch, K. (1998). Introduction to Social Research: Quantitative and Qualitative Approaches. London: Sage

Further Information

• Designing qualitative research
• Methods of data collection and analysis
• Introduction to quantitative and qualitative research
• Checklists for improving rigour in qualitative research: a case of the tail wagging the dog?
• Qualitative research in health care: Analysing qualitative data
• Qualitative data analysis: the framework approach
• Using the framework method for the analysis of
• Qualitative data in multi-disciplinary health research
• Content Analysis
• Grounded Theory
• Thematic Analysis

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• Open access
• Published: 11 June 2024

Understanding contextual and practical factors to inform WHO recommendations on using chest imaging to monitor COVID-19 pulmonary sequelae: a qualitative study exploring stakeholders’ perspective

• Gladys Honein-AbouHaidar 1 ,
• Cynthia Rizkallah 1 ,
• Imad Bou Akl 2 ,
• Gian Paolo Morgano 3 ,
• Tereza Vrbová 4 ,
• Emilie van Deventer 5 ,
• Maria del Rosario Perez 5 &
• Elie A. Akl   ORCID: orcid.org/0000-0002-3444-8618 6  

Health Research Policy and Systems volume  22 , Article number:  67 ( 2024 ) Cite this article

Metrics details

A recommendation by the World Health Organization (WHO) was issued about the use of chest imaging to monitor pulmonary sequelae following recovery from COVID-19. This qualitative study aimed to explore the perspective of key stakeholders to understand their valuation of the outcome of the proposition, preferences for the modalities of chest imaging, acceptability, feasibility, impact on equity and practical considerations influencing the implementation of using chest imaging.

A qualitative descriptive design using in-depth interviews approach. Key stakeholders included adult patients who recovered from the acute illness of COVID-19, and providers caring for those patients. The Evidence to Decision (EtD) conceptual framework was used to guide data collection of contextual and practical factors related to monitoring using imaging. Data analysis was based on the framework thematic analysis approach.

33 respondents, including providers and patients, were recruited from 15 different countries. Participants highly valued the ability to monitor progression and resolution of long-term sequelae but recommended the avoidance of overuse of imaging. Their preferences for the imaging modalities were recorded along with pros and cons. Equity concerns were reported across countries (e.g., access to resources) and within countries (e.g., disadvantaged groups lacked access to insurance). Both providers and patients accepted the use of imaging, some patients were concerned about affordability of the test. Facilitators included post- recovery units and protocols. Barriers to feasibility included low number of specialists in some countries, access to imaging tests among elderly living in nursing homes, experience of poor coordination of care, emotional exhaustion, and transportation challenges driving to a monitoring site.

We were able to demonstrate that there is a high value and acceptability using imaging but there were factors influencing feasibility, equity and some practical considerations associated with implementation. We had a few suggestions to be considered by the expert panel in the formulation of the guideline to facilitate its implementation such as using validated risk score predictive tools for lung complications to recommend the appropriate imaging modality and complementary pulmonary function test.

Peer Review reports

The novel coronavirus disease (COVID-19) first emerged in December 2019 in the city of Wuhan in China and became a pandemic as of March 2020. As of December 4, 2022 it had infected more than 611 million individuals and claimed the lives of almost 6.6 million individuals globally [ 40 ]. Ever since the first cases started to appear, the scientific community generated evidence related to the epidemiology of the virus, the clinical management of the disease, and its sequelae among survivors.

A systematic review of data from November 2021 till April 2022 showed that 32% of individuals affected by COVID-19 were asymptomatic [ 31 ]. A report from the Chinese Center for Disease Control and Prevention in 2020 showed that among those who developed symptoms, 40% had mild symptoms (fever, cough, fatigue, and headache) [ 41 ], mostly treated at home unless they developed complications that required short-term hospitalization. The remaining cases were treated in hospitals and encompassed moderate symptoms leading to pneumonia reported by 40%; severe symptoms that required oxygen therapy reported by 15% of the cases [ 39 ]. Finally, 5% develop complications leading to organ failure, mainly respiratory failure. Most of these complications increase in the presence of pre-existing risk factors [ 36 ].

Since December 2019 till November 2022, COVID-19 survivors account for more than 635 million individuals thus far. Many survivors experience sequelae of the illness that can linger for months, and are often referred to as “long-haulers” or sufferers of long-COVID syndrome [ 22 , 25 , 36 ]. Among those who recover from moderate or severe illness, long term pulmonary sequelae may be expected. The damage incurred by the virus during the acute and post-acute phase, causes the lung tissue to become fibrotic [ 4 ]. Other long-term consequences have been reported, including psychological [ 37 ], neurological, cardiovascular, and musculoskeletal, among others. Nalbandian et al. use the term “post-acute COVID-1” for long-term complications and/or symptoms present beyond four weeks from the beginning of the symptoms, i.e. after the acute phase of the disease [ 24 ]. The term “Post COVID-19 condition” has been initially proposed by WHO [ 6 ] and its clinical case definition was published [ 33 ].

Given the magnitude of this pandemic, the epidemiological studies that show the sequelae of the infection are important [ 22 , 25 , 36 ], but equally important is to know how to monitor those patients for those sequelae. The World Health Organization (WHO) has regularly updated guidance for clinical management of COVID-19, proposing a multidisciplinary approach to patient care after acute illness [ 39 ]. Early on in this pandemic, WHO issued a rapid advice guide on the use of chest imaging in acute care for COVID-19 patients considering three imaging modalities: radiography, computed tomography and ultrasound [ 1 ]. WHO conducted new systematic reviews [ 42 ] to update this rapid guidance and included a new research question on the use of chest imaging in patients who recovered from COVID-19. Persistence of pulmonary sequelae among COVID-19 patients are important to consider. Long-term physical, functional and neuropsychological complications resulting from the lung injury have been reported six to 12 months after discharge from hospital using chest imaging [ 8 ]. All severe cases admitted to intensive care units and 21% of moderate cases admitted to regular units had persistent pulmonary sequelae, which were detected using chest radiography imaging 8 weeks after discharge. 7% of patients showed glass opacities, defined as an area of haziness through which vessels and bronchial structures may still be seen, using computed tomography 18 weeks post-discharge [ 28 ]. One year after discharge, the prevalence of ground glass opacities dropped significantly but 95% of COVID-19 patients admitted to ICU had abnormal CT scans [ 8 ]. Hence, the importance of monitoring the sequelae of the infection. However, monitoring and compliance can be influenced by several other factors including availability of resources, transportation, co-morbidities, and other practical factors [ 15 ].

To optimally inform the development of this recommendation, it was considered important to explore qualitatively the relevant contextual factors influencing its implementation. WHO recommends using evidence from qualitative research to understand the valuation of the recommendations, their acceptability to stakeholders, their feasibility and equity, and the practical considerations influencing their implementation [ 38 ].

Thus, the aim of this study was to explore the perspective of key stakeholders, including providers and patients from the global community, to understand their valuation of the outcome of the proposition (i.e., monitoring pulmonary sequelae), their preferences for the modalities of chest imaging, and the acceptability, feasibility, impact on equity, and practical considerations influencing the implementation of using chest imaging.

Methods and materials

Design and approach.

This study draws on a descriptive qualitative design [ 30 ] using an in-depth interview with key stakeholder informants.

We secured ethical approval from the American University of Beirut Institutional Ethics Board before starting the study. All participants provided a verbal informed consent to participate and record the discussion. We ensured confidentiality by anonymizing transcripts, assigning each participant a codename that starts with the country name followed by P for health care professionals and Pa for patients.

Conceptual frameworks

We structured the study based on the GRADE Evidence to Decision (EtD) framework (see Table  1 ) [ 3 ], and on Heen et al. practical issues framework (see Table  2 ) [ 14 ]. We judged some practical issues to be already captured by the EtD framework (e.g., medical routine, procedure and device, recovery and adaptation, adverse effects, overall physical well-being, and costs and access). We judged other practical issues to be irrelevant (e.g., food and drinks, exercise and activities, social life and relationships, and work and education). Consequently, we deemed the following five practical issues as relevant: tests and visits, coordination of care, emotional well-being, pregnancy and nursing, and travel and driving.

Sample and recruitment

We used the purposeful sampling approach. Our key informant group included adult patients (18 years of age or older) who have recovered from acute COVID-19 illness. We also targeted health practitioners, specifically radiologists and pulmonologists caring for those patients. We excluded providers not involved in the care of COVID-19 patients.

We aimed to adopt a maximum variation sampling approach in terms of severity of disease for patients (mild, moderate, or severe) and job title for practitioners across all regions of the world.

At first, we identified health care professionals in each of the six WHO regions (Africa, Americas, South-East Asia, Europe, Eastern Mediterranean, and Western Pacific) through health care providers on the research team (known sponsor sampling approach). [MQ, 1988. #27] Then, we asked the identified providers to invite patients from their practice to participate in the study (snowball sampling). We also asked patient advocates from different countries to identify potential participants, who were invited by email until saturation was reached. (MQ., 1988).

Data collection

We used a semi-structured approach for interviews using both predetermined open-ended and probing questions (Additional file 1 : Appendix 1: KI interview guide for providers and Additional file  2 : Appendix 2: KI interview guide for patients) [ 7 ]

The interviewer (GHA), an experienced qualitative researcher who had no prior relationship with the participants, conducted the virtual interviews using WebEx. Interviews lasted on average 60 min (range 30–90 min). The discussions were in English, except for one interview conducted in Italian and translated by GPM.

We recruited between October 27, 2020, and December 26, 2020, a total of 33 participants, including 10 patients and 23 providers (of which 11 pulmonologists, 5 radiologists, 3 nephrologists, 2 intensivists, 1 family physician and 1 general practitioner) (Additional file 3 : Appendix 3: Participants’ list: providers and patients).

The first author conducted all interviews virtually using WebEx, Zoom or WhatsApp applications. Participants chose the location at the time of their preference. Recruitment and data collection occurred between October 27 and December 26, 2020.

Data analysis

GHA and CR conducted the analysis using the framework thematic analytical approach. This analytical approach consisted of 7 stages [ 12 ]. In stage 1, CR transcribed the audio-recordings verbatim. In Stage 2, GHA and CR familiarized themselves with the content of the discussion by reading each transcript and taking notes. In stage 3, CR indexed the data based on the GRADE EtD construct and Heen et al. practical issues. She provided a label for each meaningful datum. In stage 4, after indexing a few transcripts, GHA and CR met to discuss their labels and merge them into categories. In stage 5, CR applied those categories to the remaining transcripts. In stage 6, GHA and CR charted all opinions and views indexed under each category. In stage 7, they compared and contrasted the categories, and mapped connections between them. Finally, a complete narrative of the findings was created. These findings were supported by quotations triangulated between health care professionals and patients.

We ensured credibility, reflexivity, and confirmability throughout this process. For credibility and confirmability we used transcribed audio-recorded interviews as the main data repository maximum variation sampling, and a semi-structured interview approach. For reflexivity, the interviewer had no prior relationship with participants and two individuals were involved in the analysis to avoid bias interpretation of the results.

The reporting of this study followed the Consolidated criteria for Reporting Qualitative research (COREQ) Checklist [ 35 ] (Additional file 4 : Appendix 4: COREQ checklist).

Table 3 provides a summary of results for the perceptions of stakeholders of the contextual factors, based on the GRADE EtD framework and Heen et al. practical issues.

In the following text, we present a detailed narrative of themes illustrated by selected quotes from participants. In Additional file 5 : Appendices 5–10, we provide exemplary quotes from both providers and patients for each theme.

Monitoring progression is highly valued when chosen wisely and acceptable.

All patients thought if their providers asked them to do chest imaging post-recovery, they would not question its value and they “ would do whatever they [providers] wanted” US-Pa01.

Similarly providers perceived imaging post-COVID-19 as highly valuable when there is clinical indication. Mild cases ‘ patients don’t routinely need any kind of follow up imaging ’. US-P03.

While moderate and severe cases as well as those with underlying chronic diseases such as human immunodeficiency virus (HIV) infection and tuberculosis coinfection, it will be highly valued, as this participant indicated:

India-P13: So it depends on the severity of the disease during the hospitalization, and the condition of the patient on discharge.

Further, COVID-19 patients, particularly those who were hospitalized might end up with potential multi-organ dysfunction, and the stay in the intensive care unit might expose them to various diseases, such as pneumonia. Hence, for many providers monitoring them post-recovery would be an opportunity to screen and intervene on time to avoid further complications. For example, this provider pointed to low-immunity and co-infection and the importance of frequent monitoring on the treatment.

Nigeria- P06: The follow up is major. Some of them have a low immunity and if we do not catch the bacterial infection on time yes, we lost them. I think the follow up is very crucial.

Interestingly, one provider indicated that, given that this is a new disease, monitoring patients post-recovery can help the scientific understanding of the long-term sequelae of the infection and eventually improve the care.

US-P08 : mostly to understand the disease more. You see what they have findings on the imaging initially they have been improving. Also mostly to kind of look at long term sequela of the condition. But mostly to understand the disease itself, which is kind of relatively had been new.

On the other hand, a few provider participants cautioned against over-testing. First, it would be unnecessary since it will not add “to the decision making in terms of therapy…[and] you don’t want them to be having unnecessary exposure to radiation with multiples radiographs or multiple CT scans. India-P09.

Further, over-testing might end up detecting indolent findings, which would add to their psychological stress, hence unethical from the perspective of one participant:

Swiss-P02: “I think so, and then you might have a problem that you start to find incidental findings. And then you’re going to have to deal with following up on other things that you might see on the X ray that may not be even real, you know, and that’s another ethical problem. If they don’t need the radiography, you’re exposing them to radiation This psychological stress to wait yet for other results depleted patients’ tolerance. Who indicated that they “ would be very anxious because... my lung function might be deteriorating, I might have long term sequela. Ethiopia-Pa03.

Monitoring and follow-up are a reasonable clinical practice.

Among providers, we found that monitoring using imaging to follow-up on the patient’s resolution, or any potential sequelae of the disease was an acceptable practice, in fact it has been already a common practice among almost all participants except for one participant who indicated that due to poor resources in the country, monitoring was never an option.

Cameroon-P11 : No monitoring whatsoever ... Okay so I would think it’s very important to do radiological follow up on them specially to see how much damage has occurred in their lungs and also to see if some damages are still continuing after discharge. In essence our potentials in treating COVID- 19 does not lay so much emphasis on radiological findings and I understand that this is a limitation of our treatment.

Providers also indicated that since some COVID-19 patients were already accustomed to monitoring for other underlying diseases, such as for dialysis or cardiac matters, adding chest imaging monitoring would be acceptable for them. However, the downside is that often times patients may need to spend longer time for the visit, which can be beyond their ability to tolerate.

Swiss-P02: Well, I have to say if a patient is on dialysis, and they have to come 3 times a week. So, we see them and …we try to do a radiography at the baseline… we do another radiography or a CT or whatever but basically for us we get to see them pretty routinely... I think for the dialysis patients again, for them, it’s a burden because either they must come earlier to go to the radiography before the dialysis, or then go after dialysis and then it delays them going home. And then it complicates the transport.

Patients found monitoring a reasonable process, however the cost of the test would matter.

Africa-Pa02: No because it [test] is very expensive, both CT scan and treatment

Preferences for each chest imaging modality are driven by indication and the pros and cons of each.

Preferences for the different imaging modalities were mainly voiced by providers. The clinical indication and the pros and cons for each test dictate the type of test to be done.

Chest radiography is the preferred option for the following conditions: mild cases still complaining of chest pain to monitor clearance of the lungs, and for dialysis patients to detect water retention as one nephrologist indicated:

Swiss-P02: I think honestly, for our patients, sometimes the X rays actually helpful. Because sometimes they lose a lot of weight, and we need to know how much water we need to remove from the patient in a dialysis treatment. And occasionally you don’t know how quickly the patient has lost weight with COVID. So, sometimes you do the X Ray with an excuse of COVID, but you’re actually looking to see, are they filling up with water, are they’re going to develop heart failure. So, for us, sometimes there’s another extra added value.

There were a few pros for using X-rays including ‘ reducing the radiation from CT [which] is so large that if you do so frequently, it may not be good or ethical’ US-P07. It is available in local clinics as one provider indicated: ‘a lot of family doctors can do X rays. It’s amazing. They have an X ray thing in their clinic in their little office’ USP02. At times the choice of the test is driven by the cost of the test, therefore providers would choose whatever is affordable for patients as this provider indicated: ‘ The common is Chest X ray… but in some cases we do high resolution CT because CT is expensive so we do it for only those who can afford it, not for all of them’ US-P06.

The cons are not being sensitive enough and may miss significant pathology.

‘The chest X Ray, it’s not sensitive enough to show you a significant pathology. And so we have seen it with COVID, you know the chest X Ray misses a proportion, like, 40% or something’ US-P07.

Providers gave several indications for choosing chest CT scan. Chest CT scan is very sensitive to ground glass, consolidation, and fluid retention. It is also recommended for patients still depending on oxygen long after discharge. Often, it is used in cases where providers are anticipating persistent interstitial manifestations like non-specific interstitial pneumonia (NSIP). It can identify fibrotic changes and detect additional diseases, if any.

India- P05: as far as the CT scan is concerned, it is basically, it gives you a fuller picture of the chest. I mean, what is happening inside the lungs, right from the trachea to the lung parenchyma. So generally, the mindset for patients out here is better go for a CT scan because, uh, it gives a good resolution.

The cons included higher radiation exposure, lack of accessibility in local clinics and affordability for various populations.

‘If you want a CT, then the patient has to go to a hospital or a private place and then definitely for some of them it involves travel and sometimes it’s even hours of travel’ US-P02 .

The nursing and pregnant women population was of concern for radiologists, as extra precautions are needed to avoid any harm when doing the imaging.

South Africa- P16: So, high radiation risk or high radiation dose to the breasts. And reasonably achievable. So, we try to take it down to the minimum.

Finally, for the lung ultrasound, it is the preferred option to assess peripheral consolidation. It is considered an easy modality test as it is portable, accessible in local clinics, and affordable.

US-P08: … We’ve been relying a lot on it and they’re criteria to follow with the ultrasound. It’s a very easy modality. Yes, we’re using it. And now it’s like, you have those small portable ones. It’s very easy to clean it from room after room, way better than cleaning the whole chest X Ray machine.

The potential for missing central consolidation and significant pathology were cited as the major cons.

‘I mean, scanned by ultrasound, we are only able to see the peripheral one third, which are involved in COVID, but it is not only the peripheral. So central areas, we are not able to visualize using ultrasound’ US-P05.

Equity concerns across countries and within countries.

The availability of resources and health insurance coverage across and within countries impacted equity. Access to resources varied between developed such as USA and developing countries such as African countries.

One provider from the USA said:

US-P08: We have 2 big centers. CT scan is available very widely. Any issues that need any further care, again, we have video system, so if they need further evaluation, they go to their closest hospital, they get stabilized and they get transferred to one of the biggest centers, which is not too far. And either they get transferred by ground, or they’re sick, they get transferred by air, which is really fast, like talking 10 to 15 minutes by helicopter or a plane. So, the CT scan is widely available if it needs, like, a little bit of more advanced things the biggest centers, definitely, the patients get referred to them, but mostly when they get sick and need admission. For outpatient, like, imaging, scans, pulmonary function test, ultrasounds, these things are very widely available.

Compared with what providers in Africa said:

Cameroon-P11: Okay so I would think it’s very important to do radiological follow up…Most of our district health facilities will not have radiology equipment. So normally we would just do auscultations, and manage them as such, and when they go, we do not follow up. Ethiopia-P07: We have only one CT scan room, so we don’t want to contaminate that. We have a lot of patients, so we only order chest radiography using a machine which is dedicated for that purpose. So definitely if you ask the people to take CT scan for all those who have COVID, it will definitely it would put a burden to the imaging service we have and also to the health professionals, and they think that they can also have COVID-19.

One patient said when the cost of the test is fully covered, everyone would comply.

Czech-Pa06: it’s covered by the health insurance. Okay. So everyone is covered, everybody in the Czech Republic

But when there is no insurance coverage, then patients would more likely opt out.

Pakistan-Pa04: I am a teacher, so my insurance company is taking care of my entire cost of stay in hospital and all expenses…Not the case for everyone... We are a third world country. For example, Remdesivir many cannot afford it. CT scan is slightly expensive. 75% will not be able to afford those expenses.

Other factors impacting equity include the quality chasm between public and private within a country. Often, the non-insured have to rely on public services, which are typically described as crowded, under-resourced, and generally of poorer quality compared to private ones. Similarly, patients living in urban areas have better accessibility to services as compared to patients living in rural areas.

India- P09: So, CT scan facilities are most of the time available in, at least 2 or 3 cities like ours. Public sector it is a few. It is difficult to access. In private sectors, there are lots of CT scans, but again, the out of expenditure really goes high. India- P05: Yeah, that can be a problem because the means of travel are, you know, buses and trains in our country for traveling from one area to another and areas who have radiological imaging modalities are mostly located in urban areas and suburban areas.

Finally, non-COVID patients were perceived to be at disadvantage during the pandemic. Despite their needs for follow-up, many were either avoiding health care institutions (out of fear of getting the disease) or were being deferred by their providers to avoid exposing them to the infection. In either case, their follow-up care was being jeopardized by the pandemic.

India-P09: Yeah, so definitely COVID patients are still able to access healthcare in an appropriate period. And it is most unfortunate, those patients who have non-COVID illness, they are much more neglected, uh, because of this whole crisis.

Barriers and facilitators for feasibility.

Providers reported three facilitators of feasibility. Having a post-recovery COVID-19 unit with protocols was the main lever for providers to act. A provider from Ethiopia said:

‘We have a clinic, which is, uh, you know, we have a head nurse. We have a few. 6 to 7 nurses and because we have limited number of nurses, this group of nurses, half of the time they spend it with the chest team… When they come to the clinic, and we see like, 45 to 50 patients and that divided to like on average 5 residents, 1 fellow and 1 senior. We have to go through each CT scan of each patient’ Ethiopia-P07.

Second, many health centers had already established monitoring systems for other diseases, e.g., kidney disease requiring dialysis. Having the infrastructure already in place made it easier for them to build on it by adding the monitoring process for COVID-19.

‘It will actually be going to be easily integrated because a lot of these patients [oncology patients] they end up getting CT scans and, you know, pet scans routinely. Yeah, because as part of their, you know, follow up and as part of their staging, so I don’t think it will be a problem at all… What we can do, and we’ve been doing that is to try and combine these tests together so that if they have 1 appointment, they can get the rest of it together’ Jordan- P04.

The third facilitating factor was the ability to scale up team efforts. Dedicated teams were able to provide optimal services despite the multiple challenges as illustrated in this quote:

India-P05: Daily, we are able to see around 75 to 100 patients…what we have done in our Institute, that we have a hand, picked a few consultants from my department myself included. So, every other day, and, I mean, every alternate day, we are having emergency duties. So we are having dedicated duties for reporting COVID patients, on CT scan and we do it, uh, every alternate day…I mean, it has increased the burden for sure. But then we are doing it.

But the reported challenges were numerous too.

Most providers from low- and middle-income countries indicated that their human and non-human resources were limited. They did not have enough specialists in the country to do the monitoring, including pulmonologists and radiologists.

‘The lack of specialists to follow these patients. I mean, South Africa is a country of 65M people, and we’ve got 70 pulmonologists’ South Africa-P14.

For both developing and developed countries, the number of support staff available to do the tracing did not commensurate with the need, given the large number of patients.

I think the biggest challenge, obviously there’s a huge number of patients. It is overwhelming like, we’ve created a small group of doctors to, like, call patients and tell them they’re COVID positive and discuss the results. But eventually we were overwhelmed because there just so many positive patients. And so the solution was to then just say, well, you should talk to your ordering provider, your primary provider. The hard part there is as much as everyone is trying to keep up with, things changed so quickly with COVID recommendations, that primary care providers who are giving the right advice 6 weeks ago are no longer giving you the right advice US-P03.

The back log in imaging appointments due to limited number of equipment (e.g., CT scan) challenged the feasibility in developing countries.

‘ Yeah, we have a back log. We have a lot of back logs [radiology tests]. Even for admitted patients, it is difficult sometimes’ Ethiopia-P11

Some providers indicated that for elderly population, especially those living in nursing homes, access to imaging would be a challenge due to imposed COVID-19 restrictions.

US-P03: The patient population, that’s a little harder to get imaging on actually patients who go to, like, nursing homes. Because many skilled nursing facilities, they don’t have radiology services there and the ability to get the patient with medical transport from the skilled nursing facility to wherever the radiology is in back or the doctor’s appointment, or whatever, that too is also actually very difficult. So I think that population, that group where they have both mobility and transportation issues is a big one .

Patients reported different feasibility challenges.

One patient who was a severe case indicated that he was extremely deconditioned after discharge. If it was not for the rehabilitation, he would not be able to do any further testing.

US-Pa01 : I had to be lying in bed for 3 weeks. So after that, I literally could not stand up. I wasn’t able to sort of get out of the bed into a wheelchair to go to the bathroom for a week. We’re talking about a severe case.

Coordination between health care providers was lacking. For example, one patient reported receiving phone calls from the primary care provider, from their pulmonologist and another from the health center, related to the same issue.

Ethiopia-Pa03: Yeah, I think so. From my side, I was communicating with the social worker from the hospital because I was a staff there, so they call me, and they put me in contact with the psych department…. Things are very decentralized so a lot of guys might call them. The follow up is not organized so this might cause people to avoid seeking health care.

For some, it was too much to bear, too many calls, too many follow-ups.

Swiss-P02 : I think they get frustrated because they’re being phoned by a lot of different people. There’s quite a lot of phone calls also by people from the community checking on them and the officials checking that they’re at home and not outside when they should be at home, you know, these things. So I think they get a lot of phone calls. And I know for some of them, it’s definitely quite burdensome yeah, yeah.

This study highlighted important factors that informed the development of the WHO recommendation about the use of chest imaging for monitoring patients who recovered from COVID-19. While WHO suggests not systematically scheduling chest imaging follow-up at the time of hospital discharge, it identifies patient groups who might benefit from periodic follow-up imaging. This study showed that providers from 15 countries highly valued this recommendation and that patients did not question its value if it was requested by their providers. Some feasibility challenges related to availability of human and non-human resources (e.g. lack of specialists, supporting staff and/or radiological equipment), represented major challenges for implementation and likely led to inequities between high and low resource countries. Lack of specialists, support staff and radiological equipment were the major challenges for implementation.

Using chest imaging to assess lung sequelae evolution and early detection of complications such is unquestioned [ 17 ]. We know by now that COVID-19 survivors’ number is in the hundreds of millions worldwide, and the figures continue to rise. We also know that residual lung complications including lung fibrosis, bronchiectasis, or other structural abnormalities [ 18 , 19 ] are expected to remain months post-discharge among three quarters of patients [ 43 ]. Those sequelae affect lung functioning, exercise capacity and health related quality of life [ 18 , 19 ].

However, we anticipate that the monitoring using imaging on this gigantic number of survivors is far from being a simple one size fits all approach. As noted in this study, variation in resources mattered. Thus, we propose a few suggestions to facilitate the implementation of the recommended guideline, and we discuss them below. First, clinicians can include risk stratification based on validated risk score predictive tools for lung complications to recognize the patients who might benefit from follow-up imaging and identify the appropriate imaging modality, hence reducing unnecessary tests and avoiding unjustified radiation exposure, at times unethical as suggested by our participants. In low-resource settings where CT scans are scarce, effective evidence-based alternatives for imaging can be used. Third, complementary lung function tests can be concurrently considered to reduce unnecessary use of imaging. Fourth, rehabilitation programs for COVID-19 survivors are needed for monitoring patients.

Triaging patients into average and high risk for lung complications can be done using several tools from as simple as a risk score predictive tool, [ 17 , 21 ] imaging scoring to a more sophisticated artificial intelligence tool [ 10 , 11 ]. In either case, those tools are often based on key indicators that are meant to predict lung complications and to aid clinicians in their decision-making [ 13 , 21 ]. In this study, most providers were already stratifying patients based on the severity of the case during the acute phase. It is possible that their decision-making was arbitrary thus running into the risk of introducing algorithmic bias. To alleviate those systemic errors, the validated predictive risk score, imaging scores, or AI tools are meant to alleviate these bias and systemic errors. Examples of tools are numerous. Liang et al. as an example of predictive risk score, encompassed age (more than 65), co-morbidities, and Lactate dehydrogenase, blood urea nitrogen, D-dimer, procalcitonin, and ferritin levels provided an efficient risk evaluation system, and the model had an excellent discrimination and calibration during internal validation [ 21 ]. Chest radiography scoring systems and High Resolution CT scan categorization and quantification have also been used to stratify patients’ severity. [ 17 ] Alexander et al. reported a number of AI algorithms (more than 75) related to pulmonary medicine that received US Food and Drug Administration and Conformité Européenne approval [ 2 ]. It is warranted to increase awareness and adoption of those tools among providers in this specialty [ 2 ].

The role of the different modalities of imaging in the acute phase is more commonly reported in the literature than in the post-recovery phase [ 5 , 16 , 17 ]. Given the insufficient historic data on the sequelae of COVID-19, it is understandable that the evidence is still scattered and scant around the capabilities and limitations of each imaging modality in monitoring sequelae post-recovery. Shaw et al. indicated that chest radiography can be used for follow-up imaging despite the limitations in detecting subtle parenchymal changes, while chest CT is a more sensitive modality [ 32 ]. Lung ultrasound is also another option to evaluate sequelae [ 5 ]. Peng et al. found that US findings correlate with typical CT findings specifically useful to identify peripheral distribution of lung involvement [ 27 ]. Hence, the choice of modality needs to be carefully considered based on the clinical presentations and the availability of resources. However, more longitudinal studies are needed to refine this evidence and guide the practice (Rubin A, 2012) and systematic reviews of the literature are also needed.

The sequelae of COVID-19 need also to be assessed using complementary testing. Despite being asymptomatic, residual abnormalities in pulmonary function tests are expected weeks and months after discharge. Patients with persistent, new, or changing symptoms should have access to follow-up care including screening, assessment and rehabilitation interventions comprising pulmonary function tests when resources permit [ 39 ]. Zhao et al. found that the diffusion capacity of the lung for carbon monoxide (DLCO) measured by means of breath spirometry test can detect abnormal lung function among survivors. Urea nitrogen is another parameter to detect residual changes after discharge. D-Dimer elevation was an independent predictor for abnormal DLCO, thus patients with raised D-Dimer require pulmonary rehabilitation and need to be followed-up for sequelae [ 43 ].

Potential diagnostic testing strategies to inform clinical care and prognosis in the Post COVID-19 condition are numerous. New insights on the multidisciplinary nature of this condition suggest that several imaging modalities—in addition to chest imaging—might be considered subject to the clinical condition [ 26 ].

A few of our providers reported having rehabilitation centers for COVID-19 patients. Two of the severe cases we interviewed reported being severely deconditioning after spending on average three weeks in the intensive care unit, one reported being transferred to a rehabilitation center. Thornton indicates that despite the severity of their illnesses, COVID-19 patients unlike heart attack, trauma, and stroke, leave hospitals with the least support. Further, an estimated 45% of patients may require low level of rehabilitation interventions, while 4% will require more intensive rehabilitation for their neurological, respiratory and mental sequelae [ 34 ]. When asked about the feasibility of doing the imaging, some said they were too tired to go out of their homes. Hence, the need for rehabilitation programs in each country is a necessity.

The findings of this qualitative study were presented to the expert panel developing the WHO recommendation on the use of chest imaging to monitor COVID-19 pulmonary sequelae. The expert panel did consider the important contextual and practical factors influencing the implementation of the recommendation when issuing their recommendation.

Strengths and limitations

There are areas of strengths and a few limitations to be acknowledged. The most important strength is the qualitative approach adopted to delve into the details influencing the implementation of the guideline from the perspective of the stakeholders. Primary qualitative studies or systematic reviews, called qualitative evidence syntheses (QES), are becoming more commonly used in guideline development [ 20 ]. To our knowledge, no previous study examined the providers nor patients’ perspectives on monitoring using imaging post-recovery. Thus, the evidence we brought in this primary qualitative study provided a wealth of knowledge in great breadth and depth that would have not been possible otherwise. Further, we made every effort to maximize representation from different parts of the world. We included providers and patients from most continents, hence capturing a global perspective on the contextual factors influencing the implementation of monitoring using imaging. We conducted this qualitative research using at most considerations for trustworthiness including credibility, reflexivity, and confirmability. More importantly, the findings of this study were presented alongside evidence on the interventions’ benefits and harms to the guideline development guide and eventually incorporated into the COVID-19 living catalogue of guidelines [ 9 ].

Challenges encountered included our ability to recruit more patients. Most providers indicated that they needed ethical approval from their own health institutions to refer patients to us. Those patients who were referred by providers were mainly health care providers themselves. However, we relied on a patient support group to refer patients to be interviewed in order to maximize participation. In a few cases, language used during the interview was a challenge. Not all individuals were fluent in English. In one case, the patient had to call in the sister to translate the views. The vast majority were able to articulate freely.

Another challenge was recruiting providers from all specialties. For example, our sample did not include oncologists nor cardiologists. Perhaps, their perspectives would have concurred with our findings but also expanded.

This study explored the different contextual factors influencing the use of chest imaging in COVID-19 patients for post-recovery monitoring using the evidence to practice framework. This study demonstrated that there is a high value and acceptability using imaging but there were factors influencing feasibility, equity and some practical considerations associated with implementation. We suggested several measures to improve the feasibility of the guideline such as using validated risk score predictive tools for lung complications to recommend the appropriate imaging modality and complementary pulmonary function test.

Availability of data and materials

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

Abbreviations

Coronavirus disease

World Health Organization

Intensive care unit

Computed tomography scan

GRADE evidence to decision

Diffusing capacity of lung for carbon monoxide

Akl EA, Blazic I, Yaacoub S, Frija G, Chou R, Appiah JA, Fatehi M, Flor N, Hitti E, Jafri H, Jin ZY, Kauczor HU, Kawooya M, Kazerooni EA, Ko JP, Mahfouz R, Muglia V, Nyabanda R, Sanchez M, et al. Use of chest imaging in the diagnosis and management of COVID-19: a WHO rapid advice guide. Radiology. 2021;298(2):E63–9. https://doi.org/10.1148/radiol.2020203173 .

Article   PubMed   Google Scholar  

Alexander A, Jiang A, Ferreira C, Zurkiya D. An intelligent future for medical imaging: a market outlook on artificial intelligence for medical imaging. J Am Coll Radiol. 2020;17(1):165–70. https://doi.org/10.1016/j.jacr.2019.07.019 .

Alonso-Coello P, Schunemann HJ, Moberg J, Brignardello-Petersen R, Akl EA, Davoli M, Treweek S, Mustafa RA, Rada G, Rosenbaum S, Morelli A, Guyatt GH, Oxman AD, Group GW. GRADE Evidence to Decision (EtD) frameworks: a systematic and transparent approach to making well informed healthcare choices 1: Introduction. BMJ. 2016;353:i2016. https://doi.org/10.1136/bmj.i2016 .

Bazdyrev E, Rusina P, Panova M, Novikov F, Grishagin I, Nebolsin V. Lung fibrosis after COVID-19: treatment prospects. Pharmaceuticals (Basel). 2021. https://doi.org/10.3390/ph14080807 .

Czawlytko C, Hossain R, White CS. COVID-19 diagnostic imaging recommendations. Appl Radiol. 2020;49:10–5.

Article   Google Scholar  

Diaz JV, Herridge M, Bertagnolio S, Davis HE, Dua T, Kaushic C, Marshall JC, Del Rosario Perez M, Strub-Wourgaft N, Soriano JB. Towards a universal understanding of post COVID-19 condition. Bull World Health Organ. 2021;99(12):901–3. https://doi.org/10.2471/BLT.21.286249 .

Article   PubMed   PubMed Central   Google Scholar  

Dicicco-Bloom B, Crabtree BF. The qualitative research interview. Med Educ. 2006;40(4):314–21. https://doi.org/10.1111/j.1365-2929.2006.02418.x .

Eberst G, Claude F, Laurent L, Meurisse A, Roux-Claude P, Barnig C, Vernerey D, Paget-Bailly S, Bouiller K, Chirouze C, Behr J, Grillet F, Ritter O, Karaer S, Pili-Floury S, Winiszewski H, Samain E, Decavel P, Capellier G, Westeel V. Result of one-year, prospective follow-up of intensive care unit survivors after SARS-CoV-2 pneumonia. Ann Intensive Care. 2022;12(1):23. https://doi.org/10.1186/s13613-022-00997-8 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

eCOVID-19RecMap. COVID19 Recommendations and Gateway to Contextualization. 2021. Retrieved September 24 from https://covid19.recmap.org/ .

Ferrari D, Milic J, Tonelli R, Ghinelli F, Meschiari M, Volpi S, Faltoni M, Franceschi G, Iadisernia V, Yaacoub D, Ciusa G, Bacca E, Rogati C, Tutone M, Burastero G, Raimondi A, Menozzi M, Franceschini E, Cuomo G, et al. Machine learning in predicting respiratory failure in patients with COVID-19 pneumonia-challenges, strengths, and opportunities in a global health emergency. PLoS ONE. 2020;15(11): e0239172. https://doi.org/10.1371/journal.pone.0239172 .

Fields BKK, Demirjian NL, Gholamrezanezhad A. Coronavirus Disease 2019 (COVID-19) diagnostic technologies: a country-based retrospective analysis of screening and containment procedures during the first wave of the pandemic. Clin Imaging. 2020;67:219–25. https://doi.org/10.1016/j.clinimag.2020.08.014 .

Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13:117. https://doi.org/10.1186/1471-2288-13-117 .

Halalau A, Imam Z, Karabon P, Mankuzhy N, Shaheen A, Tu J, Carpenter C. External validation of a clinical risk score to predict hospital admission and in-hospital mortality in COVID-19 patients. Ann Med. 2021;53(1):78–86. https://doi.org/10.1080/07853890.2020.1828616 .

Article   CAS   PubMed   Google Scholar  

Heen AF, Vandvik PO, Brandt L, Montori VM, Lytvyn L, Guyatt G, Quinlan C, Agoritsas T. A framework for practical issues was developed to inform shared decision-making tools and clinical guidelines. J Clin Epidemiol. 2021;129:104–13. https://doi.org/10.1016/j.jclinepi.2020.10.002 .

Jiang DH, Roy DJ, Gu BJ, Hassett LC, McCoy RG. Postacute sequelae of severe acute respiratory syndrome coronavirus 2 infection: a state-of-the-art review. JACC Basic Transl Sci. 2021;6(9):796–811. https://doi.org/10.1016/j.jacbts.2021.07.002 .

Jiang ZZ, He C, Wang DQ, Shen HL, Sun JL, Gan WN, Lu JY, Liu XT. The role of imaging techniques in management of COVID-19 in China: from diagnosis to monitoring and follow-up. Med Sci Monit. 2020;26:e924582. https://doi.org/10.12659/MSM.924582 .

Larici AR, Cicchetti G, Marano R, Merlino B, Elia L, Calandriello L, Del Ciello A, Farchione A, Savino G, Infante A, Larosa L, Colosimo C, Manfredi R, Natale L. Multimodality imaging of COVID-19 pneumonia: from diagnosis to follow-up. A comprehensive review. Eur J Radiol. 2020;131: 109217. https://doi.org/10.1016/j.ejrad.2020.109217 .

Leung T, Chan A, Chan E, Chan V, Chui C, Cowling B, Gao L, Ge M, Hung I, Ipa M. Short-and potential long-term adverse health outcomes of COVID-19: a rapid review. Emerg Microbes Infect. 2020;9(1):2190–9. https://doi.org/10.1080/22221751.2020.1825914 .

Leung TYM, Chan AYL, Chan EW, Chan VKY, Chui CSL, Cowling BJ, Gao L, Ge MQ, Hung IFN, Ip MSM, Ip P, Lau KK, Lau CS, Lau LKW, Leung WK, Li X, Luo H, Man KKC, Ng VWS, et al. Short- and potential long-term adverse health outcomes of COVID-19: a rapid review. Emerg Microbes Infect. 2020;9(1):2190–9. https://doi.org/10.1080/22221751.2020.1825914 .

Lewin S, Glenton C. Are we entering a new era for qualitative research? Using qualitative evidence to support guidance and guideline development by the World Health Organization. Int J Equity Health. 2018;17(1):126. https://doi.org/10.1186/s12939-018-0841-x .

Liang W, Liang H, Ou L, Chen B, Chen A, Li C, Li Y, Guan W, Sang L, Lu J, Xu Y, Chen G, Guo H, Guo J, Chen Z, Zhao Y, Li S, Zhang N, Zhong N, et al. Development and validation of a clinical risk score to predict the occurrence of critical illness in hospitalized patients with COVID-19. JAMA Intern Med. 2020;180(8):1081–9. https://doi.org/10.1001/jamainternmed.2020.2033 .

Mendelson M, Nel J, Blumberg L, Madhi SA, Dryden M, Stevens W, Venter FWD. Long-COVID: an evolving problem with an extensive impact. S Afr Med J. 2020;111(1):10–2. https://doi.org/10.7196/SAMJ.2020.v111i11.15433 .

MQ, P. Qualitative evaluation methods. 1988.

Nalbandian A, Sehgal K, Gupta A, Madhavan MV, McGroder C, Stevens JS, Cook JR, Nordvig AS, Shalev D, Sehrawat TS, Ahluwalia N, Bikdeli B, Dietz D, Der-Nigoghossian C, Liyanage-Don N, Rosner GF, Bernstein EJ, Mohan S, Beckley AA, et al. Post-acute COVID-19 syndrome. Nat Med. 2021;27(4):601–15. https://doi.org/10.1038/s41591-021-01283-z .

Nath A, Smith B. Neurological issues during COVID-19: an overview. Neurosci Lett. 2021;742: 135533. https://doi.org/10.1016/j.neulet.2020.135533 .

Organization WH. Clinical Management of COVID-19—Interim Guidance. 2020. Retrieved October 27, 2020 from https://www.who.int/publications/i/item/clinical-management-ofcovid-19 .

Peng QY, Wang XT, Zhang LN. Findings of lung ultrasonography of novel corona virus pneumonia during the 2019–2020 epidemic. Intensive Care Med. 2020;46(5):849–50. https://doi.org/10.1007/s00134-020-05996-6 .

Robey RC, Kemp K, Hayton P, Mudawi D, Wang R, Greaves M, Yioe V, Rivera-Ortega P, Avram C, Chaudhuri N. Pulmonary sequelae at 4 months after COVID-19 infection: a single-centre experience of a COVID follow-up service. Adv Ther. 2021;38(8):4505–19. https://doi.org/10.1007/s12325-021-01833-4 .

Rubin A, Bellamy J. Practitioner’s guide to using research for evidence-based practice. 2012.

Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334–40. https://doi.org/10.1002/1098-240x(200008)23:4%3c334::aid-nur9%3e3.0.co;2-g .

Shang W, Kang L, Cao G, Wang Y, Gao P, Liu J, Liu M. Percentage of asymptomatic infections among SARS-CoV-2 omicron variant-positive individuals: a systematic review and meta-analysis. Vaccines (Basel). 2022. https://doi.org/10.3390/vaccines10071049 .

Shaw JA, Smit DP, Griffith-Richards S, Koegelenberg CFN. Utility of routine chest radiography in ocular tuberculosis and sarcoidosis. Int J Tuberc Lung Dis. 2018;22(11):1374–7. https://doi.org/10.5588/ijtld.18.0013 .

Soriano JB, Murthy S, Marshall JC, Relan P, Diaz JV. A clinical case definition of post-COVID-19 condition by a Delphi consensus. Lancet Infect Dis. 2022;22(4):e102–7. https://doi.org/10.1016/S1473-3099(21)00703-9 .

Thornton J. Covid-19: the challenge of patient rehabilitation after intensive care. BMJ. 2020;369: m1787. https://doi.org/10.1136/bmj.m1787 .

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57. https://doi.org/10.1093/intqhc/mzm042 .

Vehar S, Boushra M, Ntiamoah P, Biehl M. Post-acute sequelae of SARS-CoV-2 infection: caring for the ‘long-haulers.’ Cleve Clin J Med. 2021;88(5):267–72. https://doi.org/10.3949/ccjm.88a.21010 .

Vindegaard N, Benros ME. COVID-19 pandemic and mental health consequences: systematic review of the current evidence. Brain Behav Immun. 2020;89:531–42. https://doi.org/10.1016/j.bbi.2020.05.048 .

WHO. Using evidence from qualitative research to develop WHO guidelines. 2014.

WHO. Living guidance for clinical management of COVID-19 . 2021. [Available from: https://www.who.int/publications/i/item/WHO-2019-nCoV-clinical-2021-2 ].

WHO. WHO Coronavirus (COVID-19) Dashboard: World Health Organization . 2021. [Available from: https://covid19.who.int/ .

WHO. Infection prevention and control in the context of coronavirus disease 2019 (COVID-19): a living guideline. In. 2022. https://www.ncbi.nlm.nih.gov/pubmed/35767666 .

WHO. WHO guidelines on the use of chest imaging in COVID-19. 2022.

Zhao YM, Shang YM, Song WB, Li QQ, Xie H, Xu QF, Jia JL, Li LM, Mao HL, Zhou XM, Luo H, Gao YF, Xu AG. Follow-up study of the pulmonary function and related physiological characteristics of COVID-19 survivors three months after recovery. EClinicalMedicine. 2020;25: 100463. https://doi.org/10.1016/j.eclinm.2020.100463 .

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Acknowledgements

We would like to acknowledge Mr. Hussain Jafri, patient advocate, for his contribution in recruiting participants. The opinions expressed in this article are those of the authors and do not necessarily reflect the views of the WHO, its representatives, or the countries they represent.

This study received funding from the World Health Organization/International. All co-authors assisted in the drafting of the manuscript and read and approved the final version.

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Gladys Honein-AbouHaidar & Cynthia Rizkallah

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Imad Bou Akl

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GHA has led the data collection, analysis, and interpretation, and wrote the first draft of the manuscript. CR has contributed to data collection. EAA and GHA have led the conceptualization and design of the study. EAA, EvD, MdRP and GHA critically reviewed the manuscript. IBA, MdRP, GPM and TV contributed to the data collection. All authors have revised and provided comments and contributions to the manuscript. All authors have read and given final approval of the version to be published.

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Supplementary Information

Additional file 1:.

Appendix 1. KI interview guide for providers.

Additional file 2:

Appendix 2. KI interview guide for patients.

Additional file 3:

Appendix 3. Participants’ list: providers and patients.

Additional file 4:

Appendix 4. COREQ checklist.

Additional file 5:

Appendix 5. Valuation of outcomes associated with using chest imaging to monitor COVID-19 pulmonary sequelae, with exemplary quotes. Appendix 6. Preferences for each chest imaging modality used to monitor COVID-19 pulmonary sequelae, by indication, pros and cons, with exemplary quotes. Appendix 7. Acceptability of using chest imaging to monitor COVID-19 pulmonary sequelae, by providers and patients respectively, its determinants, with exemplary quotes. Appendix 8. Determinants of equity of using chest imaging to monitor COVID-19 pulmonary sequelae and exemplary quotes. Appendix 9. Feasibility of using chest imaging to monitor COVID-19 pulmonary sequelae by facilitators and barriers, with exemplary quotes. Appendix 10. Practical issues that patients might consider when using chest imaging to monitor COVID-19 pulmonary sequelae, with exemplary quotes.

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Honein-AbouHaidar, G., Rizkallah, C., Bou Akl, I. et al. Understanding contextual and practical factors to inform WHO recommendations on using chest imaging to monitor COVID-19 pulmonary sequelae: a qualitative study exploring stakeholders’ perspective. Health Res Policy Sys 22 , 67 (2024). https://doi.org/10.1186/s12961-023-01088-1

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Trauma-Informed Healthcare Leadership? Evidence and opportunities from interviews with leaders during COVID-19

• Sonia Rose Harris   ORCID: orcid.org/0000-0002-4599-5684 1 ,
• Alexis Amano   ORCID: orcid.org/0000-0001-7136-2197 2 ,
• Marcy Winget   ORCID: orcid.org/0000-0002-5893-280X 3 ,
• Kelley M Skeff 3 &
• Cati G Brown-Johnson   ORCID: orcid.org/0000-0002-5415-3665 3  

BMC Health Services Research volume  24 , Article number:  515 ( 2024 ) Cite this article

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COVID-19 impacted the mental health of healthcare workers, who endured pressures as they provided care during a prolonged crisis. We aimed to explore whether and how a Trauma-Informed Care (TIC) approach was reflected in qualitative perspectives from healthcare leaders of their experience during COVID-19 (2020–2021).

Semi-structured interviews with healthcare leaders from four institutions were conducted. Data analysis consisted of four stages informed by interpretative phenomenological analysis: 1) deductive coding using TIC assumptions, 2) inductive thematic analysis of coded excerpts, 3) keyword-in-context coding of full transcripts for 6 TIC principles with integration into prior inductive themes, and 4) interpretation of themes through 6 TIC principles (safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice, and choice; and awareness of cultural, historical, and gender issues).

The actions of leaders ( n  = 28) that were reported as successful and supportive responses to the COVID-19 pandemic or else missed opportunities reflected core principles of Trauma-Informed Care. To promote safety , leaders reported affirmative efforts to protect staff by providing appropriate physical protection, and enhanced psychological safety by providing channels for communication about emotional well-being. To promote trustworthiness and transparency, leaders listened to their staff, shared current COVID-19 information, and increased frequency of meetings to disseminate accurate information. To promote mutual support , strategies included wellness check-ins, sharing uplifting stories, affirming common goals, articulating fears, and leading by example. Examples of empowerment included: making time and adjusting modalities for flexible communication; naming challenges outside of the hospital; and functioning as a channel for complaints.

Reported missed opportunities included needing more dedicated time and space for healthcare employees to process emotions, failures in leadership managing their own anxiety, and needing better support for middle managers. Awareness of the TIC principle of cultural, historical, and gender issues was largely absent. Results informed the nascent Trauma-Informed Healthcare Leadership (TIHL) framework.

Conclusions

We propose the Trauma-Informed Healthcare Leadership framework as a useful schema for action and analysis. This approach yields recommendations for healthcare leaders including creating designated spaces for emotional processing, and establishing consistent check-ins that reference personal and professional well-being.

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In the early years (2020–2021) of the COVID-19 pandemic, the incidence of depression and anxiety increased in the United States (US), and overall psychological well-being decreased [ 1 , 2 , 3 ]. The mental health of healthcare workers was particularly negatively impacted as they endured unrelenting challenges in providing patient care during the prolonged crisis [ 3 , 4 , 5 ]. Negative contributors to mental health for these healthcare workers included: feeling stressed and stretched too thin, concern about exposing family/network to illness, emotional and physical exhaustion, a lack of appropriate emotional support from colleagues and supervisors, and struggles with managing home responsibilities and isolation caused by work requirements [ 6 ]. In response to these negative impacts on healthcare personnel, the US Department of Health and Human Services issued recommendations to transform workplace culture, with goals to 1) empower through reduced administrative tasks, 2) eliminate punitive policies for seeking mental health care, and 3) prioritize social connection by increasing flexibility in scheduling and building peer- and team-based care models [ 7 ]. Healthcare personnel were still expected to continue performing their duties and deliver quality healthcare, often without time for recovery or restoration [ 6 , 7 ].

Previous disaster management reports (e.g., after the 2003 Severe Acute Respiratory Syndrome (SARS) outbreak [ 8 ], 9/11 attack on the United States, and Hurricane Katrina in New Orleans) include lessons learned about the impacts of traumatic events on healthcare workers, such as need for resources that facilitate reflection on new stressors, for systems that mitigate the impact of interpersonal isolation, and for mental health resources without financial barriers for healthcare workers [ 9 , 10 , 11 ]. Analyses of the impact of COVID-19 on healthcare workers showed similar themes [ 3 , 6 , 7 , 10 ], and emphasized the need for hospital- and health system preparedness [ 12 ].

Trauma-informed care (TIC) is considered a gold standard for effective care to support patient mental health [ 13 , 14 , 15 , 16 ]. The TIC framework emphasizes a shift from asking “what’s wrong with you” to “what happened to you,” emphasizing the need for a complete understanding of a person’s lived experience in accounting for and understanding their actions [ 17 ]. This perspective underscores the need to understand a person’s behavior in the context of their life experience [ 17 ]. In medical centers, the application of TIC involves changing organizational culture through policies and procedures and incorporating an understanding of the impact on trauma into routine care [ 18 ]. The US Substance Abuse and Mental Health Services Administration (SAMHSA) outlines four key assumptions (four R’s) in TIC [ 19 ]: 1) Realize the impact of trauma on individuals, families, and groups; 2) Recognize signs of trauma; 3) Respond by applying major TIC principles; 4) avoid Re-traumatization. In addition to these four assumptions, TIC is built on 6 principles [ 19 ]: safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice, and choice; and awareness of cultural, historical, and gender issues and oppression. TIC has been widely applied, for instance in schools, social work practices, treatment of domestic violence, juvenile justice, homelessness services, and child welfare agencies [ 15 , 16 , 18 , 20 , 21 ]. Within the last decade, TIC principles have also been applied in healthcare settings; reports in healthcare indicate that TIC can improve patient care outcomes [ 13 , 22 ].

We aimed to explore whether and how a Trauma-Informed Care (TIC) approach was reflected in qualitative perspectives from healthcare leaders of their experience during COVID-19 (2020–2021). Our hope was that this analysis could inform leaders in healthcare about how to support teams and avoid pitfalls during ongoing and future crises.

Participating Institutions and Sampling: Administrative and medical leaders at four healthcare organizations across the United States (from Colorado, Michigan, and Northern California) were invited to participate in a qualitative study. Eligibility included Vice Presidents, Directors, Division Chiefs, and other high-level leadership, with goal of a sample balanced across levels of leadership and also subject matter expertise (e.g., Nursing, IT, Finance.) Institutions represented a convenience sample including three academic medicine centers and one community institution.

Interview Questions/Guide: The interview guide (Additional File 1 ) was developed based on our team’s previous study [ 23 ], and focused on understanding healthcare leader feelings of joy and distress during COVID-19. The guide aimed to identify both gratifying and distressing professional experiences prior to and during the COVID-19 pandemic. We received pilot feedback from a high-level administrator with expertise in wellness.

Recruitment Strategy: Per methods outlined in Skeff et al. [ 23 ], we recruited in a multi-step process to protect the confidentiality of participants. Once a site contact was in place at each institution, the research team furnished them with IRB-approved introduction emails, which underscored research goals and purpose. These emails were sent to potential participants directly from the site contacts. Subsequently, the research team (AA/CBJ) responded directly to potential participants, without cc’ing connecting site contacts. We contacted potential participants no more than three times by email; site contacts were not informed as to who did or did not choose to participate.

Interviews: Two women researchers, with PhD and Master’s level training and expertise in qualitative research (CBJ, AA) conducted phone and video interviews (Zoom, Zoom Video Communications, San Jose, USA); Site A and B interviews were collected August to September 2021, Site C interviews October to November 2021, and Site D interviews in November 2021. Interviews were in-depth and semi-structured, each interview (one per participant) lasted between 30–60 min. One interviewer was additionally a subject matter expert in a related topic area: physician wellness and burnout (CBJ).

Participants provided written consent to participate and verbal consent to record interviews and were assured of the anonymity of interview reporting. Interviews were professionally transcribed (Rev, Rev.com, Inc, San Francisco, USA); any identifying information was deleted.

Qualitative analysis method and rigor: Data analysis for this study used an interpretative phenomenological analysis with theme clustering using TIC Framework [ 24 ]. Data analysis was conducted in four phases: 1) a priori coding using the four TIC assumptions; 2) inductive thematic coding of those excerpts; 3) keyword assisted coding of the full transcripts for elements of the six TIC Principles, and subsequent integration of those excerpts into prior inductive themes; and 4) interpretation of themes through the six TIC Principles. First, we used a priori coding with the deductive framework of TIC assumptions: realize, recognize, respond, and resist re-traumatization . Two qualitative researchers (AA and SRH) consecutively reviewed all transcripts and coded the excerpts to the four assumptions. We identified significant overlap between the four assumptions within the data set; multiple excerpts were coded for all four TIC assumptions. While this addressed our objective of whether TIC elements could be observed in leadership experiences of gratification and distress, it did not address our subsequent question of how TIC might be evidenced in interviews.

Thus, as a second phase, SRH and CBJ used consensus coding approaches to organize TIC excerpts into inductive themes (e.g., listening) using twice-weekly meetings to come to consensus through an iterative process. We simultaneously reviewed literature for other Trauma-Informed Care organizing frameworks to help understand the data.

A third phase of analysis involved mapping inductive themes from the TIC excerpts to the 6 principles of Trauma-Informed Care : 1. Safety; 2. Trustworthiness and transparency; 3. Collaboration and mutuality; 4. Peer support; 5. Empowerment, voice, and choice; and 6. Awareness of cultural, historical, and gender issues . Safety was defined as all people within the organization feeling physically and psychologically safe. Trustworthiness and transparency were defined as organizational activities conducted transparently with a goal of increasing trust. Peer support refers to mutual self-help. Collaboration and mutuality were defined as emphasizing teamwork and power sharing. Empowerment, voice, and choice refer to building on individual strengths and shared decision making and choice. Finally, awareness of cultural, historical, and gender issues was defined as awareness of oppression with efforts to move away from prejudice and bias. These definitions were adapted from the Substance Abuse and Mental Health Service Administration [ 19 ]. Two authors (SRH and CBJ) met weekly to come to consensus over a two-month period [ 25 ]. In addition to this focused consensus analysis, all co-authors reviewed developing organizational patterns of the results during monthly research team meetings.

To ensure a comprehensive account of healthcare leaders’ experiences with this trauma-informed lens, one researcher (SRH) conducted additional coding using a modified keyword-in context approach [ 26 ]. SRH used keywords to search the data set for TIC principles and close synonyms using qualitative software (NVivo 12, QSR International, Melbourne, AUS). Passages containing a keyword were reviewed by two authors (SRH and CBJ) and incorporated into the analysis when the passage included a term used in a way that matched the definitions of the TIC principles used in this dataset. Final structure for the data was organized by the TIC principles.

This project was presented for discussion and feedback in a lecture format and small group sessions to over 40 healthcare leaders interested in clinician wellness and healthcare worker burnout in February and March 2024. This project was approved by our Institutional Review Board (Protocol # 39948).

Participants

Twenty-eight interviews were conducted via phone or Zoom with participants from four healthcare institutions across the United States (in Colorado, Michigan, and Northern California). These institutions represented both academic medical centers and community hospitals. Participants included healthcare leadership in finance, service lines, operations, and education. They filled specific roles of Chief Financial Officer, Chief Nursing Officer, Chief Medical Officer, Executive Director, or Director. Participants were 61% women ( n  = 17/28) and included ages across deciles from 30 to 70. 75% were white ( n  = 21/28) and all had 10 + years of experience in the field of health care administration. All participants who consented for an interview completed their interview. To maintain anonymity, participants have been assigned a random participant number (1–28). We use the term “leaders” throughout our results to highlight their role as leaders in their setting.

Overall, the actions of leaders that were reported as either successful responses to the COVID-19 pandemic or missed opportunities to alleviate distress mapped to core principles of trauma-informed care. Safety; trustworthiness and transparency; and empowerment, voice, and choice were reflected in our data. Principles of peer support and collaboration and mutuality were combined in our analysis as “mutual support” because while we saw examples of teamwork and power-sharing (collaboration and mutuality), there were not distinct elements of mutual self-help (peer support) perhaps due to power differentials between staff and leadership. The sixth assumption, awareness of cultural, historical, and gender issues, was largely absent from our data set. Leaders’ supportive actions and strategies are presented by TIC principle below. Table 1 provides further qualitative examples, organized first by TIC principle, then by theme. Table 1 also includes recommended future actions based on our data.

Safety . Healthcare leaders employed the principle of safety, which is defined as all members of the organization feeling both physically and psychologically safe, by (1) promoting protection to ensure physical health and (2) by not taking complaints personally. Leaders reported a missed opportunity for supporting psychological safety by not providing more attention, space, and time for emotional processing.

Promoting physical protection . Healthcare leaders reported that addressing staff concerns about physical safety—including the limited supply of personal protective equipment (PPE)—was paramount to supporting staff wellness during COVID-19. Some department’s PPE allotment was lower than staff needs. The disparity in resources raised staff fears and anxiety. In response, leaders reported feeling successful when they increased communication and specifically identified best practices vs. realistic approaches in the current environment.

Even though you know that [reusing masks with different patients, washing masks] is not best practice, it’s better than nothing—but it’s not best practice…. It was hard conversations about what is appropriate and what was the best we could do versus best practice. (Participant 2)

One leader reported using extension intravenous (IV) tubing so that nursing staff could monitor the IVs of patients from outside the intensive care unit (ICU) room. While the participant reported receiving complaints from system executives, there were no negative patient outcomes and staff were extremely satisfied.

In the end, we had absolutely zero negative patient outcomes, and our patients got better care. And the nursing staff was extremely satisfied with that, because they were able to not have to sit in that room with a patient shedding the virus. (Participant 4)

Not taking complaints personally . In best-case scenarios, interviewed healthcare leaders managed to not take complaints personally or respond in anger when they received complaints from staff for situations beyond leadership control. This spirit of acceptance created space for venting frustration without retaliation, supporting psychological safety. When leaders found themselves the target of anger, effective managers worked to let it go. “The anger of the staff that’s directed towards you, even though it’s probably not personal, but you’re the punching bag about not keeping [staff] safe” (Participant 1). In best circumstances leaders looked for potential root causes of the frustration: fear, concern for their team, lack of control:

I’d get an angry email from the head of the department and he’s just looking… out for their staff right? And, and their nurses and their other employees. So I totally get it, right. Cause I’m doing the same for mine… (Participant 8)

Missed opportunity- Not providing more attention, space, and time for emotional processing . Interviewed healthcare leaders reported that they recognized a responsibility as team leads to create space for staff to process emotions by encouraging staff to speak freely without concerns of minimization or retaliation. They reported that not dealing with the emotions of staff during the crisis setting of COVID-19 had a lasting impact:

Even now, we continue to see that and how people are very short with one another, and they don’t allow mistakes in other people and there’s a lot of unneeded hysteria, and I think that it stems back to us not really dealing with all of these emotions that we went through last year. And how do you deal with that on an administrative level, in a hospital when you have hundreds of people reporting to you? I don’t really know the answer to that, but if there was anything that I could have done better, that would’ve been anything. (Participant 7)

Trustworthiness and Transparency . To promote trustworthiness and transparency, defined as organizational activities conducted transparently to increase trust, leaders reported: (1) listening; (2) increasing frequency of information dissemination; and (3) making decisions transparently. Missed opportunities to establish trustworthiness and transparency included: (4) overcommunicating on time off and (5) not containing leadership anxiety.

Listening . Intentional listening in one-on-one interactions worked well to identify specific concerns. Leaders recognized their responsibility to “hear people out, because they need to feel like they've been heard” (Participant 4). Listening with patience established two levels of trust: “So what helps... What I need to do is give myself time to listen and to let people know what we're doing for them. So, both those things take time… one kind of helps establish understanding, trust, and the other helps establish … the next level of trust where, ‘oh, he is acting on some of the things I expressed earlier'” (Participant 4). By listening, one participant learned that staff valued hearing that managers may not have an answer but were making efforts to address staff concerns:

I think that there's a value in just listening and acknowledging and we may not have an answer, and no one does. I feel that to recognize that [transparency] exists, I think goes such a long way and I think that's why we've developed such a great rapport with many of our frontline teams, because they feel, and they see that we hear them. (Participant 5)

Increasing frequency of information dissemination. Healthcare leaders increased the frequency and modality of information dissemination about COVID-19 in response to the changing environment. Specific examples included: increasing team meetings; weekly huddles; and frequent actionable information-sharing. Leaders increased the frequency of communication to address the constant flux of COVID-19 information. A participant recalled increasing meetings to twice a month. Frequent communication in established settings created opportunities to address changing circumstances.

Leaders recognized that timely sharing of information about decision-making and the availability of resources increased trust among staff members and inhibited the spread of rumors.

When communication breaks down, that’s when rumor control starts. So, I think just being fully transparent with where you’re at, whether you had PPE, whether you didn’t. Whether you had to a process together to reuse N-95s…. [The staff] can trust you. Because it comes down to trust, it really does, it comes down to trust. (Participant 25)

Making decisions transparently . When leaders were transparent about their decision-making processes, they could communicate effectively that they were acting in the best interest of staff and patients. When they lacked information due to changing guidelines or circumstances, they reported discomfort.

I think also not always being able to answer questions or give our teams the most. Part of it is we don’t know the answers. And so not being able to provide direction to our team sometimes just because the information was changing. I felt a little bit not powerless, but I felt I always wanted to try to do more, and I couldn’t. So, I think that doesn’t feel great. (Participant 18)

Missed Opportunity- Overcommunicating on time off. Healthcare leaders noted that too much communication, specifically on weekends, sent a message that staff should continue to work even on their days off, which could undermine trust.

When we have the command center set up and there’s these things going, and we say, "Hey, it’s the weekend. You don’t need to do this." And then yet on the weekend, we’re sending them texts or emails and all these pieces... I have definitely heard from quite a few of them for feeling like... They tell us to try and work on... taking care of ourselves and resting and removing ourselves. And then yet these emails come in and it definitely comes across as we expect you to respond to these. (Participant 13)

Missed Opportunity- Containing leadership anxiety . Leaders reported missed opportunities that centered on failures to manage their own anxiety and contain it within their leadership team. Interviewees shared that they failed to protect staff from leadership anxiety, which created more chaos:

The major leadership failure here was that leaders didn’t contain anxiety within their teams. They let that anxiety fuel their own anxiety and threw it out for the organization. So we just all run and collided into each other. It was really damaging, and it took a lot of time to manage… (Participant 17)

Empowerment, Voice, and Choice (Empowerment) . Leaders communicated with staff with flexible times and modalities to promote individual empowerment defined as sharing decision making and choice. Leaders reported that they gave staff options for how and when to connect. Building pathways of support required leaders “to flex our hours, be on our emails constantly, circle back with the staff” (Participant 4). Leaders also added communication modalities - frequent emails, in-person and virtual huddle meetings, personal cell phone communications, texting options, and in-person meetings - to increase accessibility:

I gave my personal cell phone out in addition to my work cell phone, so that the staff could text or call me at any point in time. And they did, and I answered them back and went down and listened to them and their fears…Very difficult time. (Participant 4)

Mutual Support . To promote mutual support, defined as mutual self-help and teamwork, leaders reported: (1) checking on staff wellness and creating personal touch points to foster connection, particularly in virtual settings; (2) leading by example; and (3) sharing positive messages. Leaders reported a missed opportunity for mutual support by not supporting middle managers.

Checking on wellness and creating personal touch points . Leaders strengthened individual relationships with staff through developing or expanding wellness check-ins and personal touch points. These conversations set precedents to communicate about emotional well-being. For example, one leader shared that, in response to work-from-home requirements, they transitioned to “good morning” (Participant 22) emails, increased touch points with staff, and articulated interest in the impact of (home) stressors outside of work. These efforts opened pathways of communication and supported staff well-being:

We established this routine of almost good morning type emails... almost akin to if you were walking down the hallway and going in somebody’s door and just saying good morning. …it was also good from a wellness perspective, just from the standpoint of “we got to just talk” . (Participant 22)

Leading by Example . Leaders led by example, modeling desired behaviors while working to understand the unique needs of staff members. One leader noted that it was the responsibility of the leader to step in when no one else would:

I remember this one time my team doesn’t want to come in back to work, I have a patient I need to discharge. He’s homeless, he refused to wear a mask. He’s coming out to the nursing station, nursing staff [and] doctors freaked out. I remember, I wear a mask ... At that time, we also didn’t have all the PPE that we have, right? I physically went into the room and I have to push the patient’s belongings out, so he can go to a hotel. Somebody has to do the job and at the end, someone has to do it. If nobody does it, a leader has to step in and do it. (Participant 3)

Identifying a common goal . Identifying a common goal motivated teams and set universal expectations for how to respond to the new environment. One participant reported that a shared goal equipped teams to respond cohesively to the crisis.

I think it was obviously a very scary time, a lot of uncertainty surrounding when the pandemic first became, I guess, an outbreak. And one of those things that I felt like went really well as a hospital administrator is the team got together very quickly. The common goal was definitely our motivator to be able to kind of think things through. (Participant 5)

One leader spoke specifically about the common goal of “getting the job done” (Participant 5) . This participant saw team members pivot from their own responsibilities to working collaboratively for team success.

Sharing positive messages. Healthcare leaders reported that positive messages motivated the team and alleviated stress and fear during the early crisis of COVID-19. They reflected awareness that the challenges would impact each person differently recognizing that individual circumstances and prior experiences influence reactions, articulating both the recognize and realize assumption in TIC. In times of crisis, people will experience highs and lows at different times. The responsibility to engage in uplifting communication shifted by day and mood among team members. Positive messages served to “motivate” and to help people “feel better” (Participant 25).

Additionally, sharing positive moments and uplifting stories helped people “rise to the occasion” (Participant 25). To boost morale and positive messaging, leaders focused team messages to emphasize that no two people were having identical experiences during the pandemic, whether at work or at home.

Supporting everybody who was in a different situation. Some people had babies at home, some people had elementary school kids that you can’t just sit in front of a computer and think they’re going to work. There was no two people experiencing the same environment or anxiety, whether it was work-related or not. (Participant 28)

Positive communication unified and strengthened teams to respond to the crisis:

What I really appreciated about our team was it was as though different people were at a high on different days. And so, those people who were feeling better did a really nice job of just building up the team and supporting us and helping us feel good. (Participant 22)

Even in a shared experience, people react differently; however, leaders emphasized unequivocal support for the team, regardless of where they might be.

Missed Opportunity- Supporting middle management . Finally, one leader noted that the demands on middle management coming from front-line teams as well as executive and higher-level leadership were extreme. These leaders could have been better supported by higher-level leadership.

I think the first thing that comes to my mind is trying to figure out the best way to support middle management. Those people that are sort of in between trying to keep the team of frontline people together, but then also have the demands coming down from them, and trying to figure out with the current situation, how do we support that group, so they don’t feel like they’re supposed to be working 24 hours a day, seven days a week, and help them address their own burnout. (Participant 13)

Cultural, Historical, and Gender Issues . One leader reported naming and addressing oppression and racism occurring outside the hospital, acknowledging that there would be an impact on staff. As team leads, participants were also responsible for addressing challenges that could impact staff function, even when they occurred outside of the hospital system and outside of leadership control. For example, one leader described using their leadership platform to talk about George Floyd’s murder and the potential impact of racism on staff:

And I think the one that was really scary, but I felt like I had to do it, was to just talk about race. … I could not let that moment in time go by us without acknowledging how much pain many people… were feeling. (Participant 15)

The Trauma-Informed Healthcare Leadership approach

Our reported results informed the nascent Trauma-Informed Healthcare Leadership (TIHL) approach. The TIHL approach (Fig.  1 & Table  2 ) highlights successful actions and missed opportunities by leaders in different relationships/settings: one-on-one management, team participation and leadership, and at the system level. To promote safety , leaders reported affirmative efforts to protect staff by providing appropriate physical protection (e.g., PPE), and enhanced psychological safety by providing channels for communication about emotional well-being. To promote trustworthiness and transparency, leaders listened to their staff, shared up to date COVID-19 information, and increased frequency of huddles and meetings to disseminate accurate information. To promote mutual support , strategies included wellness check-ins, sharing uplifting stories, affirming common goals, articulating fears; and leading by example. Examples of empowerment included: making time and adjusting modalities for flexible communication; naming challenges outside of the hospital; and functioning as a channel for complaints.

Trauma-Informed Healthcare Leadership: Successful actions and missed opportunities by leaders in one-on-one, team, and system relationships during COVID, mapped to principles of Trauma-Informed Care

This study documents evidence of hospital administrator actions reflecting principles of trauma-informed care (TIC) during the crisis setting of the COVID-19 pandemic. Leaders reported successful actions and missed opportunities to support staff that mapped to core principles of trauma-informed care: safety; trustworthiness and transparency; peer support/collaboration and mutuality; and empowerment, voice, and choice. Awareness of the TIC principle of cultural, historical, and gender issues was largely absent.

Traumatic events, whether experienced at work or outside of employment, can manifest in behaviors or feelings that may not be related to the original stressor [ 27 ]. Through this work, we identified core behaviors to seed the proposed Trauma-Informed Healthcare Leadership (TIHL) framework (Fig.  1  and Table  2 ). These behaviors, which are mapped to the 6 key principles of TIC, suggest actions leaders can take to prevent distress and/or mitigate trauma at different levels of relationships. Based on our data and evidence in the literature, we believe that the application of the Trauma-Informed Healthcare Leadership approach may establish some of the necessary supports to alleviate stress and anxiety related to traumatic events in healthcare—that can manifest as other behaviors or contribute to burnout. Like the Sanctuary Model or other trauma-informed organizational practices [ 28 , 29 , 30 , 31 ], the proposed Trauma-Informed Healthcare Leadership framework could support leaders and staff during healthcare system strain. The Trauma-Informed Healthcare Leadership framework, however, might be more accessible to a broader set of healthcare systems due to its concise approach and strong origin in the well-established Trauma-Informed Care principles. Perhaps a best-case scenario for a system interested in addressing healthcare worker needs during and after crisis would be to start with the Trauma-Informed Healthcare Leadership approach and extend into the Sanctuary Model as time and resources allow [ 28 ].

Addressing Gaps: Supporting mental health, providing dedicated time and space for emotions, elevating needs of middle managers

Notably, leaders reported missed opportunities in the areas of safety, trust, and mutual support , pointing to an underlying gap in leadership awareness and tools to support health care worker emotional experience and mental health. Leaders noted a range of failures related to mental health supports, from a lack of dedicated space for healthcare employees to process emotions related to stressors, to limitations in managing leadership anxiety. Successes exist in the behavioral health sphere in the form of trauma-informed supervision, which we posit could be applied to remedy these gaps. Behavioral health supervision works to prevent and mitigate vicarious trauma and serves as a protective factor against anxiety and depression [ 14 ]. This practice combines knowledge of trauma with supervision and emphasizes that the relationship between supervisor and supervisees must be built on trust, with clear expectations regarding boundaries, listening, and the open exchange of feedback [ 14 ]. Additionally, emotional processing may look different for each individual and change on any given day [ 32 ]. Creating space for emotional processing could be designated spaces for verbal communication about feelings or creating time in the day for rest, exercise, or preparing nutritious food [ 32 ].

While trauma-informed supervision is useful to address gaps, it manifests in a one-to-one relationship; further research is needed to address the application of trauma-informed supervision in a one-to-many or system-mediated relationship. To support teams of health care workers, individuals must have access to a variety of psychological supports—not only through resources such as Employee Assistance Programs, but also by the allocation of time and space for individual processing, as well as with their administrators and managers. Previous literature indicates that providing dedicated spaces through restorative circles (i.e., structured times and space to discuss emotions and perception) to process emotions and self-reflect could increase self-awareness, compassion, and tolerance of stress for all involved.[ 33 ]

Lastly, with respect to leadership-identified gaps, this study also validates the need for targeted support for middle management and frontline managers. Middle managers are essential to the success of the healthcare system because these leaders provide direct support to staff [ 34 ], and this direct manager relationship is more predictive of retention than any other relationship in a work environment [ 35 , 36 , 37 ]. Additionally, previous work indicates that leadership qualities of supervisors impact staff well-being and predict burnout [ 38 ]. However, despite their importance, middle and front line managers may be limited by HR and system constraints [ 39 , 40 ]. Therefore, leveraging resources to support middle level managers may enhance both safety and mutual support (TIC Principles)—and be protective against burnout and attrition. Application of trauma-informed care in elementary school settings that trained administrators in trauma-informed approaches (to apply to students) reduced administrator burnout [ 41 ]. It stands to reason that trauma-informed training for leadership and middle managers with the first goal of supporting their staff may similarly have additional benefits of reducing leadership burnout and fatigue.

Addressing (Lack of) Awareness of Cultural, Historical, and Gender Issues

To address observed blind spot of cultural, historical, and gender issues , system level anti-oppression work is needed. Responses that mapped to the final TIC principle, awareness of cultural, historical, and gender issues , were very rarely discussed by our participants, suggesting that leaders are further hindered in their ability to address the intersection of traumatic experiences. Historically marginalized healthcare workers may be at greater risk for burnout at work[ 42 , 43 ] and poorer mental health in general [ 44 ], in addition to potentially being more vulnerable, as a population, to the impacts of trauma [ 45 , 46 ]. Previous research on racism experienced by physicians of color in health-care settings reports that physicians frequently face overt racism as well as microaggressions in their workplace [ 47 ].

Creating recognition of societal, community, and organizational oppression among healthcare leaders and staff may be the first step in addressing cultural, historical, and gender issues , but naming these issues is only the very first step. Healthcare system leadership may look to anti-racist actions in healthcare delivery to address racism and oppression in the hospital system, such as The Healing ARC or Presence 5 for Racial Justice [ 48 , 49 ]. The Healing ARC, a race-conscious approach developed by two physicians at Brigham and Women’s Hospital, calls for a shift towards holding healthcare institutions accountable for actions that result in racial inequities in health [ 50 , 51 , 52 ]. The Healing ARC is built on three components: 1) acknowledgement, meaning acknowledging how racism has added to inequities in health; 2) redress, meaning putting in place compensatory actions to account for actions; and 3) closure, meaning institutions work collaboratively with the community that has been harmed to affirm that harm has been addressed and repaid [ 50 , 51 , 52 ]. These components are similar to other restorative justice approaches emphasizing acknowledgement of harm [ 33 , 48 ]. Leaders can look to establish this or a similar model within their own system to address institutionalized racism and oppression [ 33 , 53 ].

Limitations

This study has limitations in terms of data collection and analysis. First, the focus of the interviews was not trauma-informed care. Had we asked about TIC principles, participants may have provided more focused responses, particularly regarding awareness of oppression. However, the open nature of interviews can also be seen as a strength of this study. Additionally, we only conducted one interview with each participant. Given the sensitive nature (asking about moments of joy and distress and role during the pandemic) of our interviews, a longitudinal approach may have supported greater relationship rapport and trust, which could have provided more robust examples. Finally, we cannot speak to motivation of behaviors, i.e., were their responses intentionally or unintentionally brought out of trauma-informed care. In terms of participants, our sample only includes leadership. To strengthen the Trauma-Informed Healthcare Leadership approach, it will need validation across staff. Finally, trauma-informed care does not inform a strict adoptions model; instead, this approach offers principles and assumptions. Adapting to TIHL will include defining TIC in the healthcare leadership space while offering recommendations. We hope this work is a first step in that direction.

Healthcare leaders demonstrated application of principles of trauma-informed care during the early crisis of COVID-19, specifically supporting safety, trust, mutual support, and empowerment for staff. They also reported gaps and missed opportunities related to: 1) providing more dedicated time and space for healthcare employees to process emotions related to stressors, 2) failures in managing leadership anxiety, and 3) the need for better support for middle managers. Notably, few participants addressed the principle of cultural, historical, and gender issues, indicating that efforts to promote anti-racist and anti-oppression inclusive work cultures that actively work to address continued discrimination and oppressive practices may be needed. Based on our results and corroborating literature, we propose the Trauma-Informed Healthcare Leadership framework, a straightforward approach with specific recommendations for leadership. Future research can validate and query this emerging approach and expand to middle managers and non-administrator leaders within the healthcare system.

Availability of data and materials

The data that supports these findings are available from the corresponding author, CBJ, upon reasonable request.

Abbreviations

Trauma-Informed Care

Trauma-Informed Healthcare Leadership

United States

Severe Acute Respiratory Syndrome

Substance Abuse and Mental Health Services Administration

Institutional Review Board

Personal protective equipment

Intravenous

Intensive care unit

Coiro MJ, Watson KH, Ciriegio A, et al. Coping with COVID-19 stress: Associations with depression and anxiety in a diverse sample of U.S. adults. Curr Psychol. Published online November 4, 2021. https://doi.org/10.1007/s12144-021-02444-6 .

Kujawa A, Green H, Compas BE, Dickey L, Pegg S. Exposure to COVID-19 pandemic stress: Associations with depression and anxiety in emerging adults in the United States. Depress Anxiety. 2020;37(12):1280–8.

Article   CAS   PubMed   Google Scholar  

Vindegaard N, Benros ME. COVID-19 pandemic and mental health consequences: Systematic review of the current evidence. Brain Behav Immun. 2020;1(89):531–42.

Article   Google Scholar  

Elbay RY, Kurtulmuş A, Arpacıoğlu S, Karadere E. Depression, anxiety, stress levels of physicians and associated factors in Covid-19 pandemics. Psychiatry Res. 2020;1(290): 113130.

Li Y, Scherer N, Felix L, Kuper H. Prevalence of depression, anxiety and post-traumatic stress disorder in health care workers during the COVID-19 pandemic: A systematic review and meta-analysis. PLoS ONE. 2021;16(3): e0246454.

Article   CAS   PubMed   PubMed Central   Google Scholar  

De Kock JH, Latham HA, Cowden RG. The mental health of healthcare workers during the COVID-19 pandemic: a narrative review. Curr Opin Psychiatry. 2022;35(5):311–6.

Article   PubMed   Google Scholar  

Mental Health America. [cited 2022 Oct 24]. The Mental Health of Healthcare Workers in COVID-19. Available from: https://mhanational.org/mental-health-healthcare-workers-covid-19

SARS | Basics Factsheet | CDC. [cited 2022 Dec 9]. Available from: https://www.cdc.gov/sars/about/fs-sars.html

Iwai Y, Holdren S, Rosen LT, Hu NY. Narrative trajectories of disaster response: ethical preparedness from Katrina to COVID-19. Med Humanit. 2022;48(2):e8–e8.

DePierro J, Lowe S, Katz C. Lessons learned from 9/11: Mental health perspectives on the COVID-19 pandemic. Psychiatry Res. 2020;1(288): 113024.

Zhong S, Clark M, Hou XY, Zang YL, Fitzgerald G. Development of hospital disaster resilience: conceptual framework and potential measurement. Emerg Med J. 2014;31(11):930–8.

Hendel S, d’Arville A. Reimagining health preparedness in the aftermath of COVID-19. Br J Anaesth. 2022;128(2):e100–3.

King S, Chen KLD, Chokshi B. Becoming Trauma Informed: Validating a Tool to Assess Health Professional’s Knowledge, Attitude, and Practice. Pediatr Qual Saf. 2019;4(5): e215.

Article   PubMed   PubMed Central   Google Scholar  

Berger R, Quiros L. Best practices for training trauma-informed practitioners: Supervisors’ voice. Traumatology. 2016;22(2):145–54.

Raja S, Hasnain M, Hoersch M, Gove-Yin S, Rajagopalan C. Trauma Informed Care in Medicine: Current Knowledge and Future Research Directions. Fam Community Health. 2015;38(3):216–26.

Reeves E. A Synthesis of the Literature on Trauma-Informed Care. Issues Ment Health Nurs. 2015;36(9):698–709.

Winfrey O, Perry BD. What Happened to You?: Conversations on Trauma, Resilience, and Healing. 1st ed. An Oprah Book: Flatiron Books; 2021. p. 304.

Google Scholar  

Marsac ML, Kassam-Adams N, Hildenbrand AK, Nicholls E, Winston FK, Leff SS, et al. Implementing a Trauma-Informed Approach in Pediatric Health Care Networks. JAMA Pediatr. 2016;170(1):70–7.

Substance Abuse and Mental Health Services Administration. SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach. Rockville, MD: : Substance Abuse and Mental Health Services Administration; 2014. Report No.: HHS Publication No. (SMA) 14–4884. Available from: https://ncsacw.samhsa.gov/userfiles/files/SAMHSA_Trauma.pdf

Knight C. Trauma Informed Practice and Care: Implications for Field Instruction. Clin Soc Work J. 2019;47(1):79–89.

Koetting C. Trauma-Informed Care: Helping Patients with a Painful Past. J Christ Nurs Q Publ Nurses Christ Fellowsh. 2016;33(4):206–13.

Morrissey JP, Jackson EW, Ellis AR, Amaro H, Brown VB, Najavits LM. Twelve-month outcomes of trauma-informed interventions for women with co-occurring disorders. Psychiatr Serv Wash DC. 2005;56(10):1213–22.

Skeff KM, Brown-Johnson CG, Asch SM, Zionts DL, Winget M, Kerem Y. Professional Behavior and Value Erosion: A Qualitative Study of Physicians and the Electronic Health Record. J Healthc Manag Am Coll Healthc Exec. 2022;67(5):339–52.

Smith J. https://www.apa.org . [cited 2023 Dec 5]. Essentials of Interpretative Phenomenological Analysis. Available from: https://www.apa.org/pubs/books/essentials-interpretative-phenomenological-analysis

Creswell JW, Miller DL. Determining Validity in Qualitative Inquiry. Theory Pract. 2000;39(3):124–30.

Seale C, Charteris-Black J. The SAGE Handbook of Qualitative Methods in Health Research. In London: SAGE Publications Ltd; 2022. Available from: https://methods.sagepub.com/book/sage-hdbk-qualitative-methods-in-health-research

Van der Kolk BA. The Body keeps the score: brain, mind and body in the healing of trauma. New York, NY: Penguin Books; 2015. p. 445.

Esaki N, Benamati J, Yanosy S, Middleton JS, Hopson LM, Hummer VL, et al. The Sanctuary Model: Theoretical Framework. Fam Soc J Contemp Soc Serv. 2013;94(2):87–95.

Bloom S. Caring for the Caregiver: Avoiding and Treating Vicarious Trauma. In 2003. p. 459–70.

Galvin E, O’Donnell R, Avery J, Morris H, Mousa A, Halfpenny N, et al. Residential Out-of-Home Care Staff Perceptions of Implementing a Trauma-Informed Approach: The Sanctuary Model. J Child Adolesc Trauma. 2022;15(3):653–67.

Unick GJ, Bassuk EL, Richard MK, Paquette K. Organizational trauma-informed care: Associations with individual and agency factors. Psychol Serv. 2019;16(1):134–42.

Dr. Lisa Feldman Barrett: How to Understand Emotions | Huberman Lab Podcast. 2023 [cited 2023 Nov 9]. Available from: https://www.youtube.com/watch?v=FeRgqJVALMQ

Lauridsen MB, Munkejord MC. Creating Conditions for Professional Development through a Trauma-Informed and Restorative Practice. Soc Work. 2022;67(2):135–44.

Embertson MK. The importance of middle managers in healthcare organizations. J Healthc Manag Am Coll Healthc Exec. 2006;51(4):223–32.

Naz S, Li C, Nisar QA, Khan MAS, Ahmad N, Anwar F. A Study in the Relationship Between Supportive Work Environment and Employee Retention: Role of Organizational Commitment and Person-Organization Fit as Mediators. SAGE Open. 2020;10(2):2158244020924694.

Allen DG, Bryant PC, Vardaman JM. Retaining Talent: Replacing Misconceptions With Evidence-Based Strategies. Acad Manag Perspect. 2010;24(2):48–64.

Mackenzie ML, Wallach DF. "The Boss-Employee Relationship: Influence on Job Retention" (2012). Faculty Works: Business (1973-2022). 11. https://digitalcommons.molloy.edu/bus_fac/11 .

West CP, Dyrbye LN, Erwin PJ, Shanafelt TD. Interventions to prevent and reduce physician burnout: a systematic review and meta-analysis. The Lancet. 2016;388(10057):2272–81.

Kilroy J, Townsend K, Dundon T. Embedding reciprocity in human resource management: A social exchange theory of the role of frontline managers. [cited 2022 Dec 19]. Available from: https://onlinelibrary.wiley.com/doi/full/ https://doi.org/10.1111/1748-8583.12468

Townsend K, Wilkinson A, Bamber G, Allan C. Accidental, unprepared, and unsupported: clinical nurses becoming managers. Int J Hum Resour Manag. 2012;23(1):204–20.

Kim S, Crooks CV, Bax K, Shokoohi M. Impact of Trauma-Informed Training and Mindfulness-Based Social-Emotional Learning Program on Teacher Attitudes and Burnout: A Mixed-Methods Study. School Ment Health. 2021;13(1):55–68.

Joseph MM, Ahasic AM, Clark J, Templeton K. State of Women in Medicine: History, Challenges, and the Benefits of a Diverse Workforce. Pediatrics. 2021;148(Suppl 2):e2021051440C.

Harvey SB, Epstein RM, Glozier N, Petrie K, Strudwick J, Gayed A, et al. Mental illness and suicide among physicians. Lancet Lond Engl. 2021;398(10303):920–30.

Article   CAS   Google Scholar  

Paradies Y, Ben J, Denson N, Elias A, Priest N, Pieterse A, et al. Racism as a Determinant of Health: A Systematic Review and Meta-Analysis. PLoS ONE. 2015;10(9): e0138511.

Anderson M. For black Americans, experiences of racial discrimination vary by education level, gender. Pew Research Center. [cited 2022 Dec 12]. Available from: https://www.pewresearch.org/fact-tank/2019/05/02/for-black-americans-experiences-of-racial-discrimination-vary-by-education-level-gender/

Williams MT, Metzger IW, Leins C, DeLapp C. Assessing racial trauma within a DSM–5 framework: The UConn Racial/Ethnic Stress & Trauma Survey. Pract Innov. 2018;3:242–60.

Serafini K, Coyer C, Speights JB, Donovan D, Guh J, Washington J, et al. Racism as Experienced by Physicians of Color in the Health Care Setting. Fam Med. 2020;52(4):282–7.

Brown-Johnson C, Cox J, Shankar M, Baratta J, De Leon G, Garcia R, et al. The Presence 5 for Racial Justice Framework for anti-racist communication with Black patients. Health Serv Res. [cited 2022 Sep 21];n/a(n/a). Available from: https://onlinelibrary.wiley.com/doi/abs/ https://doi.org/10.1111/1475-6773.14015

Shankar M, Henderson K, Garcia R, Li G, Titer K, Acholonu RG, et al. Presence 5 for Racial Justice Workshop: Fostering Dialogue Across Medical Education to Disrupt Anti-Black Racism in Clinical Encounters. MedEdPORTAL J Teach Learn Resour. 2022;18:11227.

Ansell DA, James B, De Maio FG. A Call for Antiracist Action. N Engl J Med. 2022;387(1): e1.

Boston Review. [cited 2022 Dec 13]. An Antiracist Agenda for Medicine. Available from: https://www.bostonreview.net/articles/michelle-morsebram-wispelwey-what-we-owe-patients-case-medical-reparations/

P W, H M, WilsonMichael, MazimbaSula, K H, P A, et al. Leveraging Clinical Decision Support for Racial Equity: A Sociotechnical Innovation. NEJM Catal Innov Care Deliv. 2022 Jul 25 [cited 2022 Dec 13]; Available from: https://catalyst.nejm.org/doi/full/ https://doi.org/10.1056/CAT.22.0076

Coates R, Umbreit M, Vos B. Restorative justice circles: An exploratory study. Contemp Justice Rev. 2003;6(3):265–78.

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CBJ, SRH, AA, MW, and KS contributed to conception and design. SRH and CBJ wrote the main manuscript text. AA and CBJ conducted data collection. SRH, AA, and CBJ conducted data analysis, which was reviewed in monthly meetings by MW and KS. All authors reviewed the manuscript.

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Harris, S., Amano, A., Winget, M. et al. Trauma-Informed Healthcare Leadership? Evidence and opportunities from interviews with leaders during COVID-19. BMC Health Serv Res 24 , 515 (2024). https://doi.org/10.1186/s12913-024-10946-9

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Migraine self-management at work: a qualitative study

• Clara Knauf 1 ,
• Katherina Heinrichs 2 ,
• Rolf Süllwold 3 ,
• Andrea Icks 4 &
• Adrian Loerbroks 1  

Journal of Occupational Medicine and Toxicology volume  19 , Article number:  22 ( 2024 ) Cite this article

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Metrics details

Migraine is common and can be highly disabling. Adequate migraine self-management (SM) can mitigate the potentially adverse health effects of migraine. However, adequate SM can be challenging to implement in everyday life, for instance, at the workplace. We aimed to explore how migraine SM is carried out at work and which occupational factors may determine effective implementation according to employees with migraine. We also explored the potential impact of the COVID-19 pandemic and the associated re-arrangement of working conditions on migraine SM at work.

We conducted semi-structured qualitative interviews (08/2020–01/2021). Participants were eligible if they have worked for at least six months with a minimum of twenty hours per week and with a migraine diagnosis. The interviews were transcribed and content-analyzed using MAXQDA.

Migraine SM was perceived to be influenced by social interactions at work (e.g., in terms of understanding vs. stigmatization), the level of job decision latitude (JDL, i.e., the extent to which one is able to influence work processes, e.g., when working from home), and workplace design (e.g., in terms of opportunities to withdraw from work). During the COVID-19 pandemic, especially increased JDL appeared to favorably influence migraine SM.

Conclusions

Migraine SM at work is fostered or complicated by various psychosocial working conditions. By considering these facilitators and barriers, more migraine-friendly workplaces can be created.

Migraine is associated with a considerable burden in terms of its prevalence, related disability, and cost. The prevalence is especially high among people between the age of 36 and 46, who are in the midst of their occupational life [ 1 ]. It has been estimated that the European Union loses € 111 billion annually due to migraine [ 2 ]. As much as 93% of this amount is considered to be attributable to indirect cost, i.e., cost resulting from lost and reduced productivity at work [ 2 ].

To successfully manage their condition, individuals with migraine need to acquire and apply various skills (i.e., self-management [SM]). Five major areas of migraine self-management activities have been identified in prior studies: (1) utilizing the healthcare system, (2) taking medication adequately, (3) using alternative therapies (such as osteopathy, herbal, and homeopathic remedies), (4) requesting social support, and (5) self-care (e.g., trigger detection and avoidance, stress management, and a healthy lifestyle) [ 3 , 4 , 5 ].

Migraine SM can be hampered or facilitated by external factors in everyday life, for instance, at the workplace. With regard to the latter, the European Federation of Neurological Associations (EFNA) conducted a survey in 2020 inquiring individuals with migraine or other types of headaches ( n  = 167) from 20 European countries what their company should do to help them cope better with the effects of their health condition [ 6 ]. Proposed areas of improvement included (but were not limited to): more understanding by managers, more opportunities to work from home, private workspace, less social interaction, part-time work, and noise-cancelling headphones [ 6 ]. In the same vein, Scaratti et al. [ 7 ] used an online questionnaire to examine the needs of headache patients in Europe ( n  = 103) related to staying at or returning to work. Here, too, physical environment adaptions (such as single offices, rest rooms), work-related aspects (e.g., longer, and flexible breaks), and support at work (among other things, social support by supervisors and human resources) were mentioned [ 7 ].

While there is thus confirmatory preliminary evidence regarding headache SM, there is still a need to examine in depth if and how working conditions may affect successful implementation of specifically migraine SM (rather than headache management in general) at work. Migraine cannot be equated with headache, as headache is only one symptom of migraine, which is also usually accompanied by other symptoms such as nausea, vomiting, or sensitivity to light, and thus likely to lead to more impairment. We aimed to gain detailed insights into the types of working conditions that may facilitate or hamper the ability to self-manage migraine. Work arrangements have changed swiftly and dramatically for many employees during the COVID-19 pandemic and we therefore also sought to explore the potential effects of these re-arrangements on SM strategies.

We conducted a qualitative study using semi-structured interviews. Our report adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) statement [ 8 ].

The primary researcher (CK) was a medical student at the time of our study. Qualitative research skills are usually not acquired during medical studies in Germany. CK conducted the study to obtain a German Doctor of Medicine (Dr. med.) degree, which is comparable (in terms of its scope and quality) with a master thesis rather than with a PhD degree. The general choice of self-management at work as the research topic was due to the foci of the research group headed by AL, who acted as CK’s thesis supervisor. It was CK’s wish to relate her research project to migraine, as she had several migraine patients in her personal environment. CK familiarized herself extensively with the methodology of qualitative research (especially through self-studies and online tutorials) and in particular with the coding process. Prior to the interviews and the analysis, CK was trained (e.g., in interviewing techniques) by KH who is an experienced qualitative researcher [ 9 , 10 ] (female, degrees in psychology and public health). Also, detailed feedback and opportunities for reflection were provided during the actual interviewing and subsequent analysis (see below).

Study population

We sought to recruit participants who met the following inclusion criteria: (1) participant-report that migraine has ever been diagnosed by a physician and (2) employment with the migraine diagnosis for at least six months with a minimum of 20 working hours per week. Study participants were recruited via three different pathways: an inpatient rehabilitation clinic for headache disorders (Berolina Klinik, Löhne, Germany), migraine self-help groups from different regions in Germany, and private contacts of members of the study team. In the run-up to the interviews all potential participants received information on the objectives of the study, the professional background of the interviewer (CK) and the inclusion criteria (either via a flyer or from CK in person). This information was presented again later at the start of the interviews. It was also ensured at the beginning of the interviews that the inclusion criteria were met. All participants provided written informed consent prior to the interviews. In line with participants’ preferences, interviews were either conducted face-to-face or by telephone. Face-to-face interviews took place in the clinic or at the participants’ homes. We did not gather any information from non-participants, that is, from those who were exposed to our recruitment efforts (e.g., members of the self-help groups), but decided not to participate. Our study was approved by the Institutional Review Board of the Faculty of Medicine of the University of Düsseldorf, Germany (# 2019 − 627).

Data collection

Based on previous qualitative research by our group [ 9 , 11 ], we designed a topic guide [see Additional File 1 ]. After three interviews, the topic guide was discussed and adjusted by the study team. In particular, we then decided to add one question about migraine SM at work specifically during the COVID-19 pandemic, as this was an issue frequently referred to in the first interviews. Prior to the interviews, participants were asked to complete a standardized questionnaire collecting information on socio-demographics and the health status (see Results – Table  1 ).

Data collection took place from August 2020 to January 2021. All interviews were conducted in German by one researcher (CK), who took field notes during the interviews. Besides the interviewer and the participant, no one was present. Follow-up interviews were not conducted. All interviews were digitally recorded and transcribed. CK received detailed feedback on the way she conducted the interviews after three interviews from AL, who is an experienced qualitative researcher [ 9 , 10 , 11 , 13 ] (male, degrees in epidemiology and health sciences). These three interviews were initially supposed to serve as test interviews, but as they contained valuable information we decided to include these interviews in the analysis. There were also no major concerns from AL regarding CK’s interview style except that CK should be even more careful not to ask too closed questions. Data collection was terminated when thematic saturation was reached, which implies that no new information was expected to be delivered by additional interviews [ 14 ]. To verify that saturation had been reached, the data analysis already started during data collection. As the interviews and the analysis were carried out by the same person (CK), she was able to pay close attention to when no new aspects were mentioned in the interviews. The interviews were then terminated after consultation with AL. Study participants were not given access to the transcripts, nor could they provide feedback on the findings.

Qualitative data analysis

Transcripts were content-analyzed [ 15 ] using the software MAXQDA 2020. The coding was based closely on the topic guide and the research questions of the study. Consequently, the questions of our topic guide [see Additional File 1 ] served as main categories (deductive coding). For example, the question ‘Are there conditions at work that help you deal with your migraine?’ served as one main category, labelled ‘Facilitators of migraine self-management’. Subcategories were then developed based on the interview content (inductive coding). After CK had coded five interviews, the coding framework was carefully reviewed by two experienced qualitative researchers (KH and AL). Once everyone approved the initial coding framework, CK applied the code system to all interviews and expanded it by adding further categories. After this first round of coding was completed, AL reviewed the codes again. For instance, AL checked the structure of the coding tree level by level to see whether the codes may be overlapping or seemed ordered logically (e.g., according to the same criteria) within each level. He read all text passages included into each code to explore whether the respective text passages relate to the same phenomenon (and thus can be grouped into a single code) or whether codes may be merged or could be further sub-divided. Based on this, he suggested changes and other inductive categories and discussed them with CK. Based on this discussion, CK re-coded all interviews. Afterwards, the codes were re-discussed with AL and the framework was marginally adjusted. Finally, CK carried out a third and final round of coding. The analysis was carried out using German-language transcripts. The quotes presented in this paper were translated from German into English by a researcher who is familiar with health research and has a Master’s degree in English studies (see acknowledgments).

Description of the sample

In total, 24 interviews were conducted with a mean duration of 31.8 min (range: 17.6–55.3, standard deviation [SD] = 11.4). Twelve interviews were carried out face-to-face and twelve by telephone. Ten participants were recruited in the rehabilitation clinic, nine through self-help groups, and five were private contacts of study team members. Table  1 shows characteristics of our sample: our study population was mainly female (88%), and the mean age was 49.5 years (SD = 9.0). More than half of the participants ( n  = 14) were classified as having a job that was mainly characterized by cognitive or psychosocial demands (e.g., librarian, social worker, pastoral counsellor). The remainder of participants had jobs with mixed requirements (e.g., teacher, nurse, shop assistant). The mean time since the diagnosis of migraine was 20.6 years and varied from five to 40 years (SD = 8.5). On average, participants reported to have had 10.0 days of migraine during the last month, but the variation was considerable (range: 2–26, SD = 6.6).

Qualitative interviews

A broad range of psychosocial facilitators and barriers of migraine SM at work emerged from our data which are described in the following. Our results indicated that the COVID-19 pandemic affected workplace SM both favorably and adversely.

All quotes referenced below can be found in the appendix [see Additional File 2 ]. If there is an interest in the shared migraine self-management strategies at work, a description of these can also be found in the appendix [see Additional File 3 ]. These are not explained in more detail below however, as the specification of the strategies is beyond the scope of our main research questions.

Which psychosocial working conditions influence migraine self-management at work?

Facilitators : The following working conditions were perceived to be helpful in managing migraine at work: (1) high social support, (2) high job decision latitude (JDL; i.e., the degree of an employee’s control over tasks and how and when they are addressed), and (3) a suitable workplace design.

Receiving social support at work from colleagues, supervisors, or in form of company or government policies was reported. Support by colleagues included the understanding for the illness, especially from colleagues with the same disease. It was frequently expressed that some colleagues could – without words – sense when the individual with migraine was not feeling well. Relevant support-related activities by colleagues that made migraine SM easier included support in avoiding triggers (e.g., by ensuring a good air supply), encouragement to withdraw during acute migraine attacks, and taking over tasks (quote 1). According to the participants, social support by supervisors was effective by creating flexible arrangements regarding tasks, working times, and locations, for example the option to work from home (quote 2). Overall, it seemed that understanding for the disease and the social support from colleagues and supervisors facilitated the SM strategy communication. In Germany, people with chronic illness (including migraine) can apply for a so-called “degree of disability”. This entails entitlement to – amongst other things – more holidays and better protection against dismissal from the job. This legal possibility was perceived as helpful, also in the way that these official degrees simplified the justification of the disease and certified its seriousness (quote 3). Furthermore, one participant shared that she has approached the staff council (in her case the teachers’ council). By disclosing her migraine in front of the council, she gained the understanding of her colleagues (quote 4).

In addition to social support, the study participants described a high JDL – that is, a high degree of control over their tasks – as beneficial. Influence on the order of tasks was perceived as allowing for flexibility in planning and carrying out SM during migraine attacks. Control over the type and number of tasks (e.g., working independently instead of attending meetings [quote 5] or the possibility to avoid screen work during the acute attack [quote 6]) were relevant in managing migraine attacks. Another important factor in terms of JDL was the possibility of working from home. The latter provided the opportunity to organize the working day according to one’s own preferences and to take flexible breaks. For example, one participant reported that one had the option of starting one’s working day later at home if one had a headache in the morning (quote 7). The improved opportunities of stopping work at home was also considered to be beneficial because, according to one participant, the threshold to stop working when experiencing complaints is lower when one works at home than at the workplace (quote 8).

A suitable workplace design, which referred mainly to a single rather than a multi-person office, was also experienced as helpful. In a single office, one had the opportunity to retreat and control air supply and light. As many individuals with migraine are sensitive to light during an attack, this can be beneficial (quote 9). In addition to the office situation, the provision of appropriate work equipment such as flicker-free screens, noise-cancelling headphones, and height-adjustable desks was also reported to have a positive effect on one’s migraine. The latter had been reported to reduce cramping in the shoulders and neck and thereby easing headaches (quote 10).

Barriers : The reported barriers represented in certain respects the opposites of the above-mentioned facilitators. Yet as these were explored separately and several aspects were not overlapping, they are described independently. The following aspects were mentioned: (1) poor social interactions, (2) unfavorable working time arrangements, (3) unfavorable workplace arrangements, and (4) other working conditions.

Poor social interactions included interactions with colleagues, supervisors, and service users. Several participants felt that migraine as a disease was often not taken seriously by others and stigmatized at their workplace. For example, this led to migraine being dismissed as a trifle or lack of understanding for staying at home in case of complaints (quote 11). One participant also emphasized the lack of empathy at the workplace: if one was present at work, one was expected to be fully functioning (quote 12). In this context, participants also found it bothering that migraine is “an invisible condition” (quote 13). During contact with service users (e.g., customers, patients, clients), it was reported to be disturbing that there were often high expectations that could not be met during a migraine attack and the associated impairments (quote 14).

Some workplace and working time arrangements were also considered as detrimental. In workplaces where migraine triggers were present (such as heavy noise, little air supply, bright light), migraine SM and especially the preventive strategy of trigger avoidance was reported to be negatively affected. For example, one participant reported the problem of sharing an office and not being able to adapt it to one’s own need, for example not having control over room temperature (quote 15). Visual display unit (VDU) work was also described to be a migraine trigger (quote 16). Another mentioned problem in workplace design was the lack of opportunities to retreat – physically (e.g., due to lack of break rooms, open-plan offices) and mentally (in terms of being permanently approachable). One participant, for example, shared that it was very difficult to deal with migraine if one always had to be approachable on business trips and thus has no possibility to retreat (quote 17). The lack of opportunities to retreat from challenging situations was believed to worsen symptoms and delay recovery from an attack. In terms of unfavorable working time arrangements, irregularity was mentioned as it implies an interruption of one’s usual circadian rhythm, which may trigger a migraine attack. This could be unscheduled client appointments due to public traffic (quote 18), shift work or exceptional weekend work (quote 19), but also business trips (including school trips as a teacher), missing or insufficient breaks, and time pressure at work (quote 20).

Other working conditions that were considered as barriers included, for example, a lack of staff and therefore a lack of replacement hampering one to go home when experiencing an acute migraine attack (quote 21) as well as poor contract conditions. Regarding the latter, one participant shared that she did not call in sick despite symptoms because then she did not get paid (quote 22).

It should also be mentioned that one study participant did not see any connection between migraine and the workplace and thus could not name any facilitators or barriers to SM (quote 23).

How was migraine self-management at work affected by the COVID-19 pandemic?

In Germany, the first two COVID-19-related lockdowns began in March 2020 (until May 2020) and in December 2020. As we gathered our data between August 2020 and January 2021, experiences during the COVID-19 pandemic were an important topic in the interviews.

One positive aspect for migraine SM during the pandemic was reported to be increased JDL. This was mainly due to new opportunities (and in some cases the obligation) to work remotely (quote 24) providing the advantage of more flexibility (e.g., the arrangement of breaks), a lower noise level, and an elimination of travel times. The fact that many employees took the opportunity to work from home also meant that the office was less busy and therefore more quiet (quote 25). This increased quietness also seemed to be beneficial for employees with migraine. One study participant reported that it was easier to close the office door to do a few stretching exercises (quote 26). The increased structuring of the working day and thus increased regularity as a facilitator for migraine SM (e.g., through stricter appointment policy [quote 27]), and the partial reduction of the workload also appeared to be positive. Furthermore, one study participant had more of a feeling of being needed in one’s work at a nursing home. The increased job satisfaction was reported to lower the frequency of migraine complaints (quote 28).

The stress caused by the additional hygienic measures, the mouth-to-nose covering, and the increased amount of screen work were perceived as negative for migraine SM. Coming in contact with COVID-19-positive people often necessitated use of additional stressful measures such as the application of hygiene or personal protective measures. This was, for example, reported by a study participant that worked as a nurse in a hospital (quote 29). The mouth-to-nose covering seemed to make it difficult not only to breathe but also to speak, which in turn was perceived to trigger migraine (quote 30). A final migraine trigger in the pandemic was the fear of the end of the pandemic and thus the loss of the possibility to work from home (quote 31).

Summary of main findings

According to our participants migraine SM at work is affected by social interactions (e.g., understanding as a facilitator vs. stigmatization as a barrier), the extent of JDL (e.g., in terms of working hours and localization) as well as the workplace design (e.g., regarding opportunities to retreat or to avoid VDU work). During the COVID-19 pandemic, it was considered positive for migraine SM that the daily structure was associated with more predictability and planning (e.g., through stricter appointment scheduling). It was also emphasized that there were more opportunities to work from home and thus better conditions for appropriate migraine SM through more JDL. A negative aspect associated with the COVID-19 pandemic was increased work-related screen time. Participants also shared that the novel hygiene measures (e.g., after contact with a COVID-19-positive person) and the mouth-to-nose covering triggered migraine complaints.

Findings in light of earlier research

In terms of barriers and facilitators, our findings are in line with prior research. A qualitative study on migraine and chronic daily headache management by Peters et al. [ 4 ] highlighted the importance of social support. The authors concluded that social support, especially from peers with the same conditions, can lead to better understanding from colleagues. The lack of social support and the feeling of stigmatization was an important aspect in another qualitative study by Heidari et al. [ 16 ], focusing on common themes of migraine patients. In that study one participant reported going to work despite migraine, because the supervisor seemed not to take migraine seriously [ 16 ]. One study – in accordance with our findings – linked stigmatization to migraine being an invisible disease, limiting the understanding for the condition [ 17 ]. Other factors influencing migraine SM that emerged from our study were factors related to workplace design. This is in keeping with findings from a cross-sectional study on the burden and impact of migraine on work productivity and quality of life that also addressed job-related migraine triggers and coping strategies: Looking at computer screens for too long was one of the two most frequently mentioned migraine triggers at the workplace [ 18 ]. Having control of light, noise and smells was under the top five coping strategies [ 18 ].

In the context of the EFNA study [ 6 ], individuals with migraine and other headache type patients were asked what their company should do to help them cope better with their condition. The wishes mentioned included a greater understanding for the disease, less social interaction, the possibility to work from home, flexible working hours, and more opportunities to withdraw if needed [ 6 ]. These aspects overlap with the facilitators that emerged from our study, in particular regarding social support and JDL.

Regarding the COVID-19 pandemic, our results are consistent with findings from other studies that found a link between personal protective equipment, especially the wearing of masks, and a worsening of migraine [ 19 , 20 , 21 ]. There is also further evidence that the increased screen time, for example due to remote working or online lessons during the pandemic, served as a trigger for migraine, in particular in young adults and adolescents [ 22 , 23 ]. However, remote working during the pandemic was generally considered to have a positive impact on migraine (e.g., reduced migraine attack duration) [ 24 ]. In a qualitative study by Buse et al. [ 20 ], examining the general impact of the COVID-19 pandemic on patients with migraine, participants reported that working from home was associated with more control, e.g., over the work environment. This reflects the importance of JDL for migraine SM. Notably, some factors that were mentioned to influence SM in general (e.g., social support) played little or no role in the COVID-19 pandemic and associated SM. The pandemic served as a kind of natural experiment elucidating which factors – when modified – influence migraine and its SM. Based on this, it can be hypothesized that the facilitator “JDL,” which played an important role in general and during the pandemic, has the utmost relevance on migraine SM at work. To our knowledge, no previous qualitative study on migraine or chronic headache has yet highlighted the high relevance of JDL for SM.

Methodological considerations

The interviews were conducted face-to-face or by telephone, depending on the preference of the participants. This provided us with the opportunity to include participants nationwide and despite restrictions due to COVID-19. We did not notice considerable differences regarding the contents between the two interview modes, which is supported by earlier research [ 25 ]. To reduce a potential healthy worker bias (i.e., the assumption that the working population is healthier than the non-working population), we recruited migraine patients who had ever worked for six months with a diagnosis of migraine and not only patients who were currently working. This allowed us to include patients who might have had to leave their job due to severe migraine or who attempted to regain their workability through rehabilitation.

We relied on the patients’ report of being diagnosed with migraine by a physician, and we did not apply the International Classification of Headache Disease [ 26 ] for diagnoses. However, those participants who were recruited from the rehabilitation clinic for migraine ( n  = 10) had received a medical diagnosis of migraine and their condition was severe enough to threaten their employment status. Further, as we interviewed mainly patients from this rehabilitation clinic and from self-help groups, however, we cannot exclude the possibility of a selection bias: those patients interact with other individuals with migraine, a are usually well-informed about their condition, and their experiences and perspectives may differ to some extent from the broader patient population. Moreover, only three out of 24 participants were male. This may have limited the scope of views that emerged from male participants regarding migraine SM. Also, our study especially included patients who worked in a job with mainly cognitive and social demands. It is well conceivable that their experiences differ from that of migraine patients who work in a job with mainly physical demands (e.g., individuals working in transportation or farming). We were able to cover a broad distribution regarding the average number of migraine days per month (mean = 10.0, SD = 6.6, range: 2–26 days). These observations increase the confidence that we covered a large range of potential views and experiences.

Another methodological weakness is that the coding was carried out by only one single person who had no previous experience in coding (CK). The intense involvement of additional individuals in the coding process (e.g., more experienced coders, people with migraine, occupational physicians, and/or neurologists), would likely have led to a richer analysis and additional insights, but this was beyond the resources of our study (i.e., time and financial means).

Finally, due to the limited experience with qualitative research methods of the first author, who was also the primary analyst, and due to the fact that it was not feasible to substantially involve additional analysists in the coding, the depth of our analyses may have been limited. Accordingly, our study may be classified as a ‘topical survey’ with aspects of a ‘thematic survey’ – according to the classification of findings in qualitative studies suggested by Sandelowski & Barroso [ 27 ]. A topical survey stays close to the data collected and is primarily a description of it, whereas a thematic survey provides a higher level of transformation of data [ 27 ]. The purpose of thematic surveys were only achieved to a limited extent. However, Sandelowski & Barroso state that a topical survey is not necessarily inferior in terms of the quality of its value [ 27 ].

Implications for practice and research

Based on our findings, interventions could be devised to improve migraine SM at work. Regarding social support, it is important to reduce stigma of migraine to create a working environment in which patients feel comfortable to talk openly about their migraine without it being dismissed as a trifle. Our study thus calls attention to the fact that migraine healthcare professionals should offer support for improving patients’ social communication skills in the workplace leading to greater acceptance of the condition. One health care sector that seems particularly suitable for this endeavor is rehabilitation. Treatment in rehabilitation clinics in Germany involves patient education, which can help to raise awareness among migraine patients for the potential influence of their working conditions on their opportunities to manage their migraine at work. Also, patients can be empowered (e.g., by improving knowledge about legal frameworks and practicing communication skills) to modify their working conditions to some extent. Similar concepts are currently tested for other conditions than migraine [ 28 ].

To increase JDL, employers should try to give migraine patients as much freedom as possible. For example, for office jobs the possibility of expanding remote working should be explored. Here, the experience gained during the COVID-19 pandemic can be used. If working from home is not possible, care can be taken to create a migraine-friendly workplace, for example by providing single offices, noise-cancelling headphones, height-adjustable desks, and places of retreat. VDU work could also be designed to be as gentle as possible, e.g., by using flicker-free screens. If available and needed, occupational physicians should support all these interventions by educating workers with migraine and by serving as mediators between supervisors and employees with migraine.

All these interventions should be carefully developed and evaluated prior to their implementation in routine care. We believe that more preparatory research is needed. Firstly, as mentioned above, our analysis may be limited in depth. It therefore seems promising to carry out additional qualitative studies that involve analysts with more diverse professional backgrounds and employees with migraine as co-researchers. In the next step, the scope of the problem could be confirmed, and possible interventions may be explored. Quantitative research (e.g., surveys) would be suitable to examine, amongst others, the proportion of workers with migraine that find self-management at work to be challenging, to prioritize areas for intervention, and to examine what types of interventions would be acceptable to those receiving them and those potentially delivering them. Also, working life in the post-COVID-19 era has further evolved since our study to arrive at a “new normal” (e.g., allowing for more home office working hours than in the pre-COVID-era), which our study does not reflect, and which follow-up qualitative studies could explore. Furthermore, quantitative studies could test hypotheses that can be deduced from our qualitative study (e.g., “The ability to perform migraine SM at work is associated with the level of experienced JDL”). Such research could move beyond self-management as an outcome to include symptoms and occupational outcomes (e.g. workability, presenteeism and absenteeism) and may explore whether improved migraine SM at work curtails the considerable cost associated with migraine-related impairment.

Migraine SM at work is influenced positively and negatively by various occupational factors. By considering these facilitators and barriers, a more migraine-friendly workplace can be created to reduce a burden not only for patients but also for society. Further research is needed before interventions can be implemented.

Data availability

Data cannot be shared publicly because the transcripts may contain sensitive information. The data may be obtained from the corresponding author upon reasonable request and provided that legal frameworks are not violated and that responsibilities and confidentially have been clarified.

Abbreviations

Chronic migraine

• Self-management

Job decision latitude

European Federation of Neurological Associations

Visual display unit

Headache disorders. World Health Organization. 2016. https://www.who.int/news-room/fact-sheets/detail/headache-disorders . Accessed February 13, 2024.

Linde M, Gustavsson A, Stovner LJ, Steiner TJ, Barré J, Katsarava Z, Lainez JM, Lampl C, Lantéri-Minet M, Rastenyte D, de la Ruiz E, Tassorelli C, Andrée C. The cost of headache disorders in Europe: the Eurolight project. Eur J Neurol. 2012;19(5):703–11.

Article   CAS   PubMed   Google Scholar  

Peters M, Abu-Saad HH, Vydelingum V, Dowson A, Murphy M. Patients’ decision-making for migraine and chronic daily headache management. A qualitative study. Cephalalgia. 2003;23(8):833–41.

Peters M, Abu-Saad HH, Vydelingum V, Dowson A, Murphy M. Migraine and chronic daily headache management: a qualitative study of patients’ perceptions. Scand J Caring Sci. 2004;18(3):294–303.

Article   PubMed   Google Scholar  

Peters M, Abu-Saad HH, Robbins I, Vydelingum V, Dowson A, Murphy M. Patients’ management of migraine and chronic daily headache: a study of the members of the Migraine Action Association (United Kingdom). Headache. 2005;45(5):571–81.

Results of EFNA’s survey on stigma and neurological disorder. European Federation of Neurological Associations. 2020. https://www.efna.net/survey2020/ . Accessed January 13, 2023.

Scaratti C, Foitzek N, Grignani E, Leonardi M, Raggi A, Coenen M. The employment needs and the factors having a negative or positive impact on work of people with chronic diseases in Europe: the case of headache. Neurol Sci. 2018;39(Suppl 1):121–3.

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.

Heinrichs K, Vu-Eickmann P, Hummel S, Gholami J, Loerbroks A. What are the perceived influences on asthma self-management at the workplace? A qualitative study. BMJ Open. 2018;8(8):e022126.

Article   PubMed   PubMed Central   Google Scholar  

Heinrichs K, Hermülheim V, Pilz González L, Loerbroks A. When in doubt … Career Indecision,Mental Wellbeing, and Consultation-seeking Behaviour-A qualitative interview study among students and counsellors. Int J Environ Res Public Health. 2021;18(23):12604.

Loerbroks A, Nguyen XQ, Vu-Eickmann P, Krichbaum M, Kulzer B, Icks A, Angerer P. Psychosocial working conditions and diabetes self-management at work: a qualitative study. Diabetes Res Clin Pract. 2018;140:129–38.

Kroenke K, Spitzer RL, Williams JBW, Löwe B. An ultra-brief screening scale for anxiety and depression: the PHQ-4. Psychosomatics. 2009;50(6):613–21.

PubMed   Google Scholar  

Scharf J, Angerer P, Müting G, Loerbroks A. Return to work after Common Mental disorders: a qualitative study exploring the expectations of the involved stakeholders. Int J Environ Res Public Health. 2020;17(18):6635.

Corbin JM, Strauss AL. Basics of qualitative research: Techniques and procedures for developing grounded theory. Fourth edition. SAGE Publications. 2014.

Mayring P. Qualitative Content Analysis [Qualitative Inhaltsanalyse: Grundlagen und Techniken. 12., überarb. Aufl.]. Weinheim, Beltz. 2015.

Heidari E, Rao D, Pfalzgraf AR, Lobo C, Giannetti V. An explorative study of common themes of patient experiences with migraine. Prim Care Companion CNS Disord. 2022;24(2):21m02939.

Basoglu Koseahmet F, Polat B, Gozubatik-Celik RG, Baytekin I, Soylu MG, Ceyhan Dirican A, Ozturk M. An invisible cause of disability: stigma in migraine and epilepsy. Neurol Sci. 2022;43(6):3831–8.

Haw NJ, Cabaluna IT, Kaw GE, Cortez JF, Chua MP, Guce K. A cross-sectional study on the burden and impact of migraine on work productivity and quality of life in selected workplaces in the Philippines. J Headache Pain. 2020;21(1):125.

Yuksel H, Kenar SG, Gursoy GT, Bektas H. The impacts of masks and disinfectants on migraine patients in the COVID-19 pandemic. J Clin Neurosci. 2022;97:87–92.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Buse DC, Gerstein MT, Houts CR, McGinley JS, Uzumcu AA, McCarrier KP, Cooke A, Touba NM, Nishida TK, Wirth RJ, Lipton RB. Impact of the COVID-19 pandemic on people living with migraine: results of the MiCOAS qualitative study. Headache. 2022;62(3):284–93.

Ong JJY, Bharatendu C, Goh Y, Tang JZY, Sooi KWX, Tan YL, Tan BYQ, Teoh HL, Ong ST, Allen DM, Sharma VK. Headaches Associated with Personal Protective Equipment - A cross-sectional study among Frontline Healthcare workers during COVID-19. Headache. 2020;60(5):864–77.

Wehbe AT, Costa TE, Abbas SA, Costa JE, Costa GE, Wehbe TW. The effects of the COVID-19 confinement on screen time, headaches, stress and Sleep disorders among adolescents: A Cross Sectional Study. Chronic Stress (Thousand Oaks). 2022;6:24705470221099836.

Abou Hashish EA, Baatiah NY, Bashaweeh AH, Kattan AM. The online learning experience and reported headaches associated with screen exposure time among Saudi health sciences students during the COVID-19 pandemic. BMC Med Educ. 2022;22(1):226.

Currò CT, Ciacciarelli A, Vitale C, Vinci ES, Toscano A, Vita G, Trimarchi G, Silvestri R, Autunno M. Chronic migraine in the first COVID-19 lockdown: the impact of sleep, remote working, and other life/psychological changes. Neurol Sci. 2021;42(11):4403–18.

Sturges JE, Hanrahan KJ. Comparing telephone and face-to-face qualitative interviewing: a research note. Qualitative Res. 2004;4(1):107–18.

Article   Google Scholar  

IHS Classification ICHD-3. International Headache Society. https://ichd-3.org/classification-outline/ . Accessed February 13, 2024.

Sandelowski M, Barroso J. Classifying the findings in qualitative studies. Qual Health Res. 2003;13(7):905–23.

Salandi J, Hayden MC, Heinrichs K, Limbach M, Schultz K, Schwarzl G, Neumeister W, Loerbroks A. Can an educational intervention in the context of inpatient pulmonary rehabilitation improve asthma self-management at work? A study protocol of a randomized controlled trial. BMC Pulm Med. 2024;24(1):40.

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Acknowledgements

The authors would like to thank Prof. Dr. Scott Stock Gissendanner for his support related to participant recruitment (Berolina Klinik, Löhne). For her translation of the quotes, we are grateful to Lisa Guthardt (Institute of Occupational, Social and Environmental Medicine, Faculty of Medicine, University of Düsseldorf). The authors would also like to thank the participants for taking their time to share their experiences with respect to working with migraine.

Open Access funding enabled and organized by Projekt DEAL. This research did not receive any funding.

Open Access funding enabled and organized by Projekt DEAL.

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Institute of Occupational, Social and Environmental Medicine, Centre for Health and Society, Faculty of Medicine, University of Düsseldorf, Moorenstr. 5, Düsseldorf, 40225, Germany

Clara Knauf & Adrian Loerbroks

Institute of Health and Nursing Science, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany

Katherina Heinrichs

Berolina Klinik, Löhne, Germany

Rolf Süllwold

Institute of Health Services Research and Health Economics, Centre for Health and Society, Faculty of Medicine, University of Düsseldorf, Düsseldorf, Germany

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C.K., K.H., A.I. and A.L. contributed to the conception and design of the study. C.K. and R.S. contributed to the acquisition of the data. The interviews were conducted by C.K. C.K. performed the analysis and interpretation of the data supported by K.H. and A.L. C.K. drafted the manuscript and all authors revised it for intellectual content. All authors read and approved the final version of the manuscript. All authors agreed to be accountable for all aspects of the work.

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Correspondence to Adrian Loerbroks .

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Knauf, C., Heinrichs, K., Süllwold, R. et al. Migraine self-management at work: a qualitative study. J Occup Med Toxicol 19 , 22 (2024). https://doi.org/10.1186/s12995-024-00421-w

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• Qualitative research
• COVID-19 pandemic

Journal of Occupational Medicine and Toxicology

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“We’re so limited with what we actually can do if we follow all the rules”: a qualitative study of the impact of COVID-19 public health protocols on violence against women services

• C. Nadine Wathen 1 ,
• Caitlin Burd 2 ,
• Jennifer C. D. MacGregor 1 ,
• Jill Veenendaal 2 ,
• Isobel McLean 3 ,
• Tara Mantler 4 &

the Violence Against Women Services in a Pandemic Research Team

BMC Public Health volume  22 , Article number:  1175 ( 2022 ) Cite this article

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Violence against women (VAW) is a major public health problem that grew worse during the COVID-19 pandemic. While all services were impacted by changing pandemic guidance, VAW shelters, as congregate settings with multiple funders and regulators, faced unique challenges.

We conducted a qualitative analysis of interviews with 26 women’s shelter staff and eight women accessing care, as well as 10 focus groups (five each at two time points approximately a year apart) involving 24 leaders from VAW and related services in Ontario, Canada.

We identified eight overlapping themes specific to government and public health COVID-19 regulations and their application in women’s shelters. Overall, inconsistency or lack of clarity in rules, and how they were communicated, caused significant stress for women using, and staff providing, services. Staff and leaders were very concerned about rules that isolated women or replicated other aspects of abusive relationships. Women wanted to understand what options were available and what was expected of them and their children in these spaces. Leaders sought clarity and consistency from their various government funders, and from public health authorities, in the face of ever-evolving directives. As in the broader public, there was often the perception that the rules did not apply equally to everyone, for example, for women of colour using VAW services, or those whose first language was not English.

Conclusions

In the absence of consistent pandemic guidance and how to implement it, many VAW services devised tailored solutions to balance safety from COVID-19 with women’s physical and emotional safety from abuse and its impacts. However, this was difficult and exhausting. A key policy implication is that women’s shelters are a distinct form of congregate housing; they are very different in terms of services provided, size, type and age of facilities from other congregate settings and this must be reflected in public health directives. Better communication and synchronization of policies among government funders and public health authorities, in consultation with VAW sector leaders, would mean protocols tailored to minimize harm to women and children while protecting health and safety.

Peer Review reports

Violence against women (VAW) is a major public health crisis in Canada and globally [ 1 ]. As noted early in the COVID-19 pandemic, times of crisis are known to make VAW worse, both in incidence and severity [ 2 ]. In fact, in March 2020, the United Nations (UN) Secretary General predicted a “horrifying global surge in domestic violence” [ 3 ]. This proved to be prescient, with rates of VAW rising globally, one in two women reporting that they or a woman they know experienced violence during the pandemic, and seven in 10 women feeling that domestic violence increased [ 4 ]. In Canada, before the pandemic, a woman was killed by a current or former partner about once a week and a woman or girl killed every 2.5 days. The most recent data in Canada shows an increase to one femicide approximately every 1.5 days [ 5 , 6 ].

Many inter-related factors are associated with these increases in violence during the pandemic, including, as summarized by the World Health Organization [ 7 ], disruption to services and access to formal and informal support networks, and lack of availability of safe shelter due to service restrictions. Along with a range of relationship and pandemic specific factors (e.g., lockdowns bringing increased proximity to the abuser with no ability for respite or escape and increased financial and other material stresses through job loss and underemployment), it became clear early in 2020 that women in violent relationships, and their children, would be at increased risk. Moreover, the organizations designed to serve them would be severely impacted by pandemic-specific and -related factors. Even prior to this health crisis, VAW services were under-funded, limited in their ability to support women in leaving violence due to a chronic lack of safe and affordable housing, and tasked with serving women and children experiencing the acute and longer-term effects or trauma and violence, including mental health and substance use concerns; in some cases, especially in under-served rural areas, women’s shelters also became de facto homeless shelters for women, even if they were not experiencing immediate risk from violence. Adding the COVID-19 pandemic to these longstanding issues created a perfect storm of what we’ve termed “multiple pandemics” [ 8 ] starting in 2020 and continuing to the present day.

Women’s shelters and “rules” Footnote 1

Emergency shelters for women experiencing acute violence from a partner are unique environments. While they have some similarities to other services for those experiencing homelessness, including space constraints, time limits on stays, etc., safety from immediate violence from the abusive partner is the paramount consideration; as well, children are almost always present in these shelters. It is well-established from processes such as domestic violence death reviews and related research that when women leave, or attempt to leave, a violent relationship, or take other steps towards safety for themselves and their children, the risk of severe violence significantly increases. Leaving is, in fact, a key risk indicator for femicide in the context of violent intimate relationships, as the abusive partner begins to feel the loss of control and may lash out to re-establish dominance [ 9 ]. Thus, as women’s shelters in Canada evolved from private homes where women could hide, to government-funded facilities with explicit mandates, procedures and accountabilities [ 10 , 11 ], the emphasis on keeping those inside safe, through features like double, buzz-through steel doors, security cameras, visitor logs, etc., made shelters sometimes feel like prisons designed to keep people in, as well as out.

As noted above, shelters are chronically under-funded and over-capacity [ 12 , 13 , 14 ], with physical space designed to maximize beds, not flexibility in space use, and therefore women are routinely triaged for service. Even before the COVID-19 pandemic, shelter leaders and staff balanced rules of stay with client autonomy, woman/child well-being, especially in the context of the traumatic effects of violence experiences, and the safety of staff and other residents [ 15 ]. At the micro level, this could play out as rules designed to reduce risk by limiting outings and visitors, enforcing curfews, and requiring abstinence with respect to on-site smoking, alcohol and drug use. At a more macro level, this has meant organizational mandates that explicitly exclude those deemed as “high risk” or “unsafe”, including women actively using certain substances or in acute mental health distress, being excluded from residential services [ 14 ]. As Kulkarni et al. [ 15 ] note, and we have explored in related analyses [ 8 ], these rules often reinforce or re-activate women’s previous experiences of violence, stigma, inequity and structural racism. In the context of severe capacity limits, the issue of who deserves service, and who is “safe” to be in shelter, takes on additional importance, especially as pandemic restrictions began to emerge that further limited access to shelters [ 16 ].

Women’s shelters and public health

There is a paucity of literature on the role of public health regulations, programs or services as they pertain to VAW services. No literature was identified detailing any relationship between local or regional public health authorities, and those providing VAW services. Anecdotal evidence from VAW organizations in Ontario, Canada (our research context), and examination of the prevailing public health legislation, the Ontario Health Protection and Promotion Act [ 17 ], reinforced that these two sectors were, prior to the current pandemic, largely siloed. At the individual service level, there may have been occasional referrals by VAW workers of women to specific public health programs, such as well-baby visits or sexual health clinics, and in some cases public health nurses would conduct visits in the shelter, but very little else. For those organizations large enough to have a commercial kitchen, food safety regulations and inspections would apply. In one case, an executive director (ED) partnering on this research commented on a positive relationship with public health that also included advice on infection control practices prior to COVID-19, as well as the above activities, but this was an exception, at least among this anecdotal survey of Ontario VAW agency EDs. The lack of significant organizational-level interaction between these sectors prior to COVID-19 is interesting given VAW’s framing, as noted above, as a “major public health issue” by the WHO and others. This presents a research gap, as well as an ideal space in which to explore how COVID-19 responses impacted a sector rarely previously considered by public health authorities.

The current research, co-led with leaders from the VAW sector in Ontario, Canada, is part of a larger mixed method project designed to understand the impact of the pandemic, and responses to it, on VAW services generally. The present analysis examines how the evolving policy context, as represented by emerging guidance and protocols from public health and other government authorities, impacted those receiving, providing and guiding care in shelters for women experiencing violence. The specific research question was: how did changes in public health and government rules, and how these were communicated, impact the care provided and received in women’s shelters?

Interpretive description (ID), combined with an integrated knowledge mobilization (KMb) approach, provided the methodological context for this study. ID was originally conceived as an inductive qualitative approach to provide ways of understanding phenomena that are useful to applied health practice [ 18 ]. Integrated KMb is an approach to research that engages knowledge users in the development, implementation, and dissemination of mutually beneficial research [ 19 , 20 ]. The two approaches are well-aligned in that they prioritize the articulation, through data analysis and meaning-making, of actionable messages that are explicitly embedded in existing social and cultural environments, and reflect both what is known, and what needs to be changed, about practice and policy. In our project, and with a focus on providing pathways for action, we collaborated with five executive directors (EDs) from urban and rural women’s shelters in Ontario, Canada as active partners in crafting the research questions, recruiting participants, and framing how results were communicated to various audiences. The content experts on the research team, who are immersed in relevant literature, complemented the lived expertise of the EDs to ensure, consistent with the ID approach, that extant knowledge was continuously embedded in emerging findings to create recommendations that would both advance practice and policy, while being grounded in existing realities. Further methodological details are described elsewhere [ 21 ].

Sampling & recruitment

Women using emergency residential shelter services, staff providing direct service, and executive directors (EDs) in these and related organizations serving women with violence experiences were eligible to participate. We used purposive and snowball sampling to recruit participants. Research partners supported recruitment by 1) ensuring shelter staff were aware of the study; 2) asking shelter staff to advise women about the study; and 3) inviting ED colleagues from both women’s shelters and other services women may use when experiencing violence (e.g., homeless shelters, trauma counseling agencies) to participate in the study.

Participants & procedures

The participants in this study were from 24 VAW/shelter agencies across Ontario, Canada and included three separate groups: 1)eight women (mean age 32 years, SD = 11.13) who had lived in a residential women’s shelter during the pandemic, or alternate housing offered by the shelter due to COVID-19 capacity restrictions (i.e., hotel/motel) [ 21 ]); 2) 26 direct service staff; and 3) 24 EDs (mean age 48 years, SD = 9.53) from 14 VAW/shelter organizations, and 10 other organizations providing services to women experiencing violence (e.g., counseling agencies, homeless shelters). The characteristics of those providing data for each group are provided in Table 1 .

One-on-one semi-structured telephone interviews were conducted with women and staff. Five focus groups with EDs, each consisting of four to six participants, took place via videoconference and each was facilitated by two research team members. These focus groups were repeated with the same participants approximately 12–14 months later – i.e., we heard from leaders relatively early in the pandemic (“wave 2” in Ontario in late Summer/early Fall 2020) and later (“wave 3”, Fall 2021, prior to the Omicron variant arriving in Ontario). Footnote 2

Interviews and focus groups addressed questions regarding participants’ service-related experiences during the pandemic. The first set of discussions occurred prior to vaccines, thus focused on the earlier stages of the pandemic, as staff and leaders re-organized their work flows specific to physical distancing, quarantine and infection control guidance (personal protective equipment (PPE), cleaning, etc.). The follow-up focus groups with leaders allowed us to ask about vaccination-related protocols and mandates, and how these unfolded in organizations and across the sector.

Data coding & analysis

Interviews and focus groups were transcribed verbatim using a professional transcription service and coded using Quirkos qualitative analysis software (Quirkos 2020, Version 2.4.1). Along with the principal investigator, team members involved in conducting the interviews and focus groups developed a preliminary coding scheme. Using this, a subset of transcripts was coded independently, each by two of seven core research team members. Pairs of coders met to discuss the coding scheme and brought suggested revisions back to the larger group. After several rounds of discussion and revision, the coding scheme was finalized, remaining transcripts were coded by two team members each, and the Quirkos files were combined. Two team members assigned to the thematic area specific to public health/government rules read and re-read relevant text to further extract meaning and develop an understanding of the data overall, while also, per the interpretive description approach, recontextualizing participants’ comments within the broader literature [ 22 ]. Revisions to the names and definitions of codes were made throughout, as needed. All authors provided input on the quotes presented in this paper and attention was paid to ensure representation of a variety of participant perspectives, as well as to include both converging and diverging points of view. As part of our integrated approach to knowledge mobilization, study partners were consulted on emerging themes during two half-day sessions dedicated to sharing and discussing the interpretation of findings, and how best to communicate them to specific key audiences. Thus, the recommendations presented at the end of this paper were co-developed with the VAW organization EDs partnering on the study.

Ethics approval and consent to participate

This study was approved by the Western University Non-Medical Research Ethics Board (REB Protocol 115865). Informed consent was obtained from all participants.

Our analysis identified eight themes that we organized under two domains. Comments from EDs, direct service staff, and women receiving care were often coded under more than one theme. Figure  1 describes the eight themes, conceptual links between them (as indicated by repeated coding overlap), and the participant groups (EDs, staff, and/or women) in which each theme was present.

Themes, Theme Descriptions and Conceptual Links Among Themes

*Data from all three sources (women and staff interviews, focus groups with executive directors) contributed to all themes except these two which were present in staff interviews and focus groups only

Rule environment: understanding and following new, changing, and conflicting rules

Different rules.

One of the key themes, present in ED and staff data, was the notion of different rules coming from, and being implemented in, different ‘places.’ For example, some participants commented that rules varied among public spaces, businesses or agencies, and could also vary from one shelter to another, depending on their regional public health unit. An ED described the challenge of balancing rules from various levels of government with expectations from funders:

And it makes it difficult to be able to give the quality care that we want to give, but we need those spaces because I’ve got Ministry [funders], I’ve got Public Health, I’ve got Ontario, I’ve got like a whole bunch of people telling me that I can’t have them [clients] in shelter, so it makes it a whole lot more challenging. So, when I talk to my funder about like oh, we have this challenge, it’s like managing all of these spaces. [FG3, time 1]

Or as another ED in a follow-up (Fall 2021) focus group said:

[W]e’ve been treated like a congregate care setting throughout the entire pandemic… so when they started opportunities to vaccinate … other public health units in other parts of the province were qualifying VAW shelter workers as healthcare workers and interpreting the direction from the Ministry of Health as this includes the shelter workers. But in [location] that wasn’t the case and so it got pretty fierce for a few days, [we] had some pretty intense conversations with Public Health and it didn’t make a whole lot of sense… what I learned is it was an inconsistent interpretation of what the Ministry was saying to public health units. [FG5, time 2]

Rules created at higher levels were often not specific to the shelter context, therefore EDs and staff engaged in a process of deciding which rules to follow, i.e., which were most applicable and aligned with shelter practice, and where additional information might be sought to support these decisions. For example:

But we didn’t go with the health unit’s version [for guidance for developing vaccination policy] because one of the neighbourhood resource centres hired a lawyer to develop a policy that was well suited to the work that we do [FG5, time 2]

Moreover, this staff member described wanting to be more involved in how to implement rules and not even knowing where various rules came from:

…I guess the policies got put in place and then it was kind of up to us as workers to relay to our women… because I don’t know if some of them are coming from – like what is coming from the government, health units, and then what is coming from the agency itself. I think that I would like more clari[ty]… because you can’t do anything about changing the government’s rules or policies, or even the health unit... we can ask questions or kind of say, the impact of what the agency's policies may have on the women… [I want] to be able to have that dialogue around that . [S13]

Understanding, communicating & keeping up with rules

Women, staff, and EDs shared comments about understanding and communicating rules during the pandemic. For example, EDs described the difficulty of staying up to date:

Just really having to really educate myself and keep in tune with what is happening on a daily basis on the news with COVID and just the changes … occurring with bylaws and different policies that we have to add to, you know, the policies and procedures to our shelter to ensure the safety of our clients, the staff.... [FG5, time 1]

Challenges related to understanding rules also had to do with the pace at which rules changed:

I think some of the challenge in all of this has been discrepancy in information and what seems like misinformation because you’re given one directive or certain information one week and then the next week it’s quite different and I think the entire population has experienced a bit of that. So that has made it challenging for educating our staff so that they have knowledge so that they’re then able to support clients…. Particularly at the beginning, it was changing all the time. So trying to be flexible and taking in new information and that constant change can be challenging. [S23]

There were also challenges related to the communication of rules within shelter, and to the shelter from outside sources. This included EDs navigating how to relay important information about government mandates and pandemic protocols from a number of agencies to their teams without inundating them with an overwhelming amount of information that sometimes changed drastically throughout the day. Others noted that communication from public health and government authorities often included over-explanation, with sometimes redundant links to outdated guidance, or information tangential to the core message; as one ED said: “ break it down to what do we need to do. Six items, what do you expect us to do. Not 15 pages of there’s this option and there’s this, and there’s this. What are the bottom lines, what are your expectations? ” [FG3, time 2].

The abundance and ever-changing nature of rules led to confusion for everyone, with EDs commenting on a “trickle down” effect of the lack of clarity from external authorities impacting their ability to guide managers and direct service staff, and from there, the ability of staff to best support women. The following series of quotes exemplifies this:

When you’ve got people that are moving around with no clarity with regards to what’s your portfolio now and what does this mean, like that’s challenging. So clarity from the government with regards to who’s on this team, what are their different roles. How is Public Health and the Ministry intersecting because, you know, there were times where I asked the Ministry questions, they were like – they’re trying to figure it out themselves and, you know, they don’t know who these people are [FG1, time 2] …But sometimes our feedback like from management is… there’s been a lot of like contradictory things and so it just doesn’t feel very settled, I’ll put it that way… but I will say overall, it seems that all of us are somewhat confused about what we should be and what we should not be doing . [S2] I had a few little problems there with understanding some of the rules… We did a meeting about once a week, sometimes two times [for] COVID updates, and I would ask for the form so I know the rules, so I know everything, and they would tell me that I’m not allowed to have documents because it’s something to do with if they’re service documents that I can’t, and we’re not allowed to have one. So, it was a little difficult to understand the rules and stuff. [Woman (W) 5]

At the point of care, staff were aware that clients wanted more information and wanted to communicate more clearly but faced barriers in doing so. For example, women identified that the way in which restrictions were delivered or communicated to residents could have been improved and feedback could have been sought from clients, where possible. Staff tried to be as transparent as possible with clients, even amidst changing rules and mandates that were difficult to understand and employed a trauma- and violence-informed approach wherever possible to deliver, in compassionate ways, difficult information about isolation requirements and virus updates.

Rule vacuum

While at different times during the pandemic there was an (over)abundance of rules, at other times, or with regard to certain issues, staff and EDs experienced a ‘rule vacuum.’ For example, this ED spoke about not having guidance when they needed it:

So, I went ahead and built a policy around what we were going to do in-house and how I was going to implement it. And thank God it was in line with – partially at least – with what the Ministry wanted to implement in June. But I didn’t know. I had no idea. So, I felt like OK, we’re spinning our wheels doing all this stuff when… I like the idea of having some autonomy, but on the other hand, it would have been nice to give us some kind of a framework for what expectations [they] had of us. [FG4, time 1]

While EDs sometimes lacked guidance from their local public health authority or from various government Ministries, at the shelter level, some staff members spoke about particular situations where there were no rules in place for what to do, for example, if/when: a shelter client got COVID-19, staff were in contact with someone who was in contact with a positive case, or there was a delay in receiving clients’ COVID-19 test results. This staff member felt a need for more and clearer rules in general, while recognizing why this wasn’t always possible:

…but if we had really clear rules and boundaries and expectations, I think that would actually be super helpful. I would definitely appreciate more of that. But I know that’s also hard, because things come up and you just have to wing it because you haven’t experienced it. Right? [S2]

A lack of rules, or guidance for how to implement them, resulted in extra work for EDs and staff, but also tremendous stress and frustration. This ED described needing to figure things out on their own:

I felt pretty hung out to dry for many, many months and we finally just stopped asking them for help and we went and found our own guidelines, our own tools. And then by the time [area] Public Health was getting out how we’re supposed to be running things, we’d already put all these practices into place and found money and found, you know, donations… like I’ve never in my life felt so much anger and frustration and feeling so abandoned by a public health unit that was supposed to be protecting us. [FG2, time 1]

This extra work and frustration associated with the lack of guidance remained a common theme in the follow-up focus groups.

Finally, staff and EDs also described how, even when there were rules, they did not necessarily come with the information needed for implementation – guidance had to be tailored to the shelter context.

[Shelter management] asked us our opinion with everything, but mainly, it came from, like, public health. So, anything that … the Ministry or public health would mandate, then we would have to obviously follow, right? So, they would put it in place, and then our manager would ask us, like, ‘What is your opinion? How do you think this is going to work?’ or, ‘What are some ways that we could do it?’ And because we work so closely with the women and are always in the hub of everything, we do have more information that would work better, right? [S25]

Rule compliance & enforcement

Given the number of new pandemic-related rules added to the pre-existing rules for staying in shelter, issues of compliance and enforcement were never far from the surface. For example, this ED wrestled with complying with COVID-19 rules in shelter that went against her values for providing care and, in her view, compromised women’s safety:

When I get stuck on [whether to comply] and start thinking I should follow some of the compliance guidelines, I sit down and I say to myself, and I have done this four times in the pandemic: if this woman dies, and these are four specific women, what will I be able to say on the stand of an inquest that makes any sense? Will I say I followed these rules and therefore she had to go here and leave here and not have the safety that she needed in that acute moment? [FG1, time 1]

Again, this was an issue that persisted across time. EDs in our follow-up focus groups also discussed rules that did not prioritize women’s safety and were facing new issues when it came to vaccination enforcement for clients in shelter: “ If it's a choice between a woman being homeless or living in danger or living rough, and coming here and having to be vaccinated, the choice is very easy for me. ” [FG2, time 2]. Footnote 3

Many direct service staff were concerned about enforcing rules rather than prioritizing women’s autonomy, and felt challenged regarding whether, and how, to enforce the rules. For example, this staff member was able to rationalize enforcing isolation requirements for women in shelter:

So we did it because respecting health guidelines and trying to respond to a pandemic takes precedence over personal choice and freedom to make your own decisions. So we did come down pretty strongly with that and if people were not able to maintain that, we told them that they needed to find another place to be. [S22]

This staff member described the varying reactions that women had to staff members’ enforcement efforts:

[I]n the beginning it felt like we were really policing people because we were constantly like… oh no, you can’t be hugging … your mask, you know… don’t forget to sanitize when you get back in, like we were constantly like just reminding people. And, you know, because people were under a lot of stress sometimes people were like ‘oh, OK sorry,’ you know, and sometimes people were like ‘are you f*cking serious? ’ [S16]

Overall, staff enforced rules to varying degrees, and some mentioned that it was difficult or impossible to do where children were concerned (e.g., ensuring young children maintain physical distance in shelter). Moreover, there were varying levels of compliance (e.g., related to mask-wearing) among and between staff and women that sometimes led to tensions in the shelter. One woman described how she felt when another woman in shelter was not being compliant: “ And the other family just – she doesn’t follow the rules, so she kind of does her own thing. Like to me it actually pissed me off. And I complained” [W6]. In contrast, some women strictly adhered to the rules, for example, this staff member spoke of a woman who was supposed to stay in her room: “… that’s how restricted she felt, that her daughter had fallen and was bleeding from her mouth, and she still didn’t leave the room to come out to us ” [S5]. Finally, some women spoke of the actual or suspected consequences of breaking the rules. One woman described being “ called up ” (i.e., reprimanded) for getting too close to other people. Another woman said,

A lot of people… knew they had nowhere else to go… so they wouldn’t question [the rules]… and they were afraid they were going to get locked in or… or everyone was really scared of getting in trouble, like and we were going to get kicked out and then be on the street . [W5]

Rule application & impact

Negative impacts of rules.

In general, COVID-19-related rules made shelter work and life more difficult for all involved:

We can’t just make decisions just based off of a pandemic. Like we can get creative because it’s not working for the women. And then it’s making staff’s job harder because we’re trying to navigate ways to support them when we’re like so limited with what we actually can do if we follow all the rules. [S21]

Later in the pandemic, EDs particularly struggled with staffing issues caused by rules, for example:

I’ll also mention… the mandated policy that we got from ministry also required us to have all of our volunteers be vaccinated or [have regular testing], so we lost about 30% of our volunteers… [volunteers] answer our crisis and support line. [FG5, time 2]

As this staff member described, there were serious concerns about the impact of service changes to accommodate new rules on quality of care: “ Some of the orders and some of the directives really, from a trauma-and violence-informed perspective, didn’t necessarily always meet the needs of the women that we were supporting ” [S20]. In addition, the rules felt so restrictive for some women that they left shelter (to return to their partner or other unsafe space) or were reluctant to come at all. As this woman commented, at times the rules seemed to take priority over women’s best interests: “… and it almost feels like bullying at some point where it’s just they’re not – like they’re taking the rules more seriously than like the community’s benefits and the mental side of things ” [W5].

The language of not being “allowed” to do various things was quite common throughout the data. Perhaps even more troubling was how women, staff, and EDs spoke about the controlling aspect of rules (e.g., not being allowed to leave one’s room, limited connection with staff or other residents) and how they replicated the abusive relationship dynamics that women were trying to leave behind. For example, this staff member described the requirement that women were accompanied when they left the shelter for errands or appointments:

It’s created a difficult situation, and women have been upset. It ties back to feeling like they don’t have that control. And I’m sure that that is something that they’ve already experienced so often in life, fleeing domestic violence. So to now have to have that control over when they leave and when they come on our timeline has been really difficult. [S19]

Accordingly, staff and EDs were negatively impacted when they felt pressure to, or actually did, implement or enforce rules that compromised their values:

It also continues to be a challenge because of some of the directions we’re getting from our Ministries about some of the rules and expectations that we have to follow. They’re not trauma- and violence-informed. They’re just not. And some of those expectations are at – there’s conflict there… when the Ministry is holding the purse strings and then you having to comply when it feels like it’s a violation of some of your organization’s values, it’s a tricky space to navigate. [FG3]

Again, this sense did not improve as the pandemic evolved to the point of vaccines being available, though there was far more diversity in opinions on this specific issue, with, as noted above, vaccine mandates being applied to staff, but not to women using services:

…we’ve always advocated for people and women’s bodies not to be policed by other systems, right. So how is it that we are supporting the government’s decision that people need to be vaccinated in order to maintain employment, how is it that we’ve jumped onto that so well and are willing to give up a core principle and value that we’ve held for so many years? [FG1, time 2]

Finally, some of the negative impacts of the rules took the form of the removal of positive experiences. Specifically, use of communal spaces, group activities, and physical contact were not allowed. This participant described what it was like:

And it was just so, like, we’d set up lawn chairs in a parking lot for people to sit out there. And their family would come, they were not allowed to hug them, they’re not allowed to, like, you know, when you see your mom, you want to give her a hug. You can’t do that. You’re going through this traumatic experience where you’re torn away from your family and your home and everything, and these grandkids can’t run up and hug their grandmother, right? ... It’s heartbreaking to see. [S25]

Rule inequities

Women, EDs and, particularly, staff, spoke about how the rules, their implementation, or their impacts were not always fair. There were two main ways these inequities took place, with rules disproportionately impacting 1) clients (as opposed to staff), and 2) vulnerable groups. For example,

We’re saying to women that they’re not allowed to go out and they’re not allowed to talk to each other. But we have the privilege to do that in our – to whatever, in our home life, so would have to be mindful that how we enforce those rules to the women that have no choice, would have to be conscious of that and we need to take that in consideration when we are out and about with family and friends and interacting too as well… [S15]

In contrast, one staff member pointed out that the inequity sometimes went the other way, with women in shelter being allowed to do things after their initial two-week quarantine, Footnote 4 such as leaving the shelter over-night, that staff did not feel free to do themselves in the interest of keeping women safe.

Some women using shelter services were particularly impacted by rules that no longer allowed care to be tailored to their unique needs. Those described as experiencing inequity because of rules (within and/or outside of shelter) included Indigenous women and women of colour, as well as women with low literacy, those on low income (e.g., who can’t afford masks or hand sanitizer), with mental health concerns (including anxiety related to mask-wearing), and women who are not fluent in English. This staff member described a situation where one woman was disproportionately impacted by isolation and how shelter staff tried to help her by bending the rules:

But she went right from isolation in her own home to isolation in a completely new place where she knew absolutely no one. She doesn’t speak English fluently. And so, she was having, like, complete mental health crises during the quarantine period. And, we couldn’t do anything for her, you know. Like, we were so restricted. And, you know, we problem-solved constantly… We eventually settled on allowing her… and her daughter to go… [to] a courtyard in the middle… which has a small playground for really small kids in it. And so, we ended up telling everyone else that they couldn’t go into the courtyard and she was allowed to use the courtyard for the second week. So, that helped her. [S5]

These staff members described how women of colour were less able to advocate to have their needs met and experienced discrimination with regard to rule enforcement:

And for me as staff, it’s so hurtful. As a Black woman, it’s so hurtful to see how when you know [how] to navigate the system and challenge how you get your needs met… those women of colour who are so fearful and just kind of say yes and just go along with whatever. [S14] And I’ve heard from Indigenous members from the community that are saying if I was to require [vaccine mandates], I wouldn’t have any staff, right, because my community doesn’t trust the government or anything the government does. We’ve seen genocide, we've seen… and I could say the same from the Black community, right? [FG1, time 2]

One size doesn’t fit all

One of the reasons the rules didn’t work well for women, staff, and EDs was that they were often ‘blanket’ rules to be implemented across sectors, organizations, and clients, and/or across an entire type of setting, such as “congregate care”, despite significant heterogeneity between, for example, a long-term care facility, a penitentiary, and a women’s shelter. Some participants spoke about it being unclear how rules created at a higher level (e.g., by the funding Ministry) applied or should be implemented in the VAW shelter context, or that it didn’t make sense to have the same rules apply to both long-term care homes and shelters. More often, however, this theme was present at the individual level. For example, this staff member contextualized the rules within the VAW sector that is known for providing care based on individual women’s needs:

It’s hard. It’s hard. It’s been really difficult, because I’m just like scrolling through who has been in and each woman is so different and has different needs, that how they’re handling COVID is also really different. There’s always challenges. It depends on what they’re going through. [S24]

For women, this theme was present in their comments about the need for flexibility or accommodation.

I think there could have been sort of more meeting in the middle in terms of just mental health and letting us outside for a little bit… There was no real discussion about what would benefit us, it was just kind of, like, okay, this is what’s happening. And I understand the seriousness of it all, but considering that we were coming from traumatized recent pasts and the need for mental health [support] in that case… And just, like, a little bit of sunshine can do enormous things for your body and mind and soul, so yeah, just a little bit more flexibility in that regard alone would have made a huge difference. [W2]

‘Stupid’ rules: applying judgement and workarounds

The most common theme across the interviews (especially among staff) and focus groups involved participants questioning the rules (e.g., pointing out inconsistencies), highlighting the impractical nature of rules or the difficulty to implement them, or describing ‘workarounds,’ including developing new processes, or adapting, breaking, or loosening rules. For example, this staff member disagreed with specific rules related to COVID-19 testing:

But I don’t understand our logic, if a woman comes in and she’s staying more than two weeks, then she’ll need to be tested for COVID [after] two weeks. And I’m like well that doesn’t make sense, why don’t we get her tested when she comes in, because if she has COVID, I don’t want to find out two weeks later. That’s something I don’t agree with in our policy, I think that’s rather silly. [S11]

Furthermore, these staff members described how some rules were impractical for a shelter setting: “ when you have a four-year-old who… literally all she wants to do is hug everyone and play with everyone, you cannot tell a four-year-old to social distance. Like, it just doesn’t work ” [S5]. Similarly, this ED described how some rules were difficult to implement and the “fight” it took to make authorities understand: “ So we fixed that [vaccine requirement for everyone on building entry], that’s no longer the case anymore but it was a fight that just – it took energy that we didn’t really have” [FG5, time 2].

Finally, these participants spoke about how they needed to do what they felt needed doing to support their clients:

We really can’t have clients in the office. That was something that was stressed in the beginning and still is. Due to the nature of the work, we’ve had to, like, have some leniencies on that. But… I have a chair in front of my office and my desk, and I used to have clients just sit there, we’d talk, we’d work on things. [S18] When a woman comes into shelter they are to be 14 days in isolation. Yeah. And some shelters like it didn’t make sense it was increasing the risk to women so we chose not to do it. But then we’re going exactly against to what the Ministry was directing us to do. So when you gave that feedback [to the Ministry] there wasn’t any change or movement ... So then you have to go against what they’re saying because we know it’s not going to work to keep women safe, it’s going to increase their risk. [FG3, time 2]

Dealing with COVID-19 rules, trying to fit them to the context of residential care for highly traumatized women and children, while trying to manage the impacts of the rules on services, was frustrating and exhausting. In our follow-up focus groups with leaders, we heard about the profound exhaustion they all felt, and the loss of many in their ranks, either to early retirement, or to sectors that pay better and are less fraught – both in the type of work, and in the constraints put around it. The following quote provides an excellent macro-level insight into the disconnect between how, why and where rules originated, and the harm that a lack of understanding of the work of women’s shelters among public health and government authorities had on care:

We are talking about the impacts on policy, on government, and our workload around policy and keeping women safe; to me, the issues that are being missed are what’s changed for the women, how much higher risk they’re at. Why is the Ministry not asking that? What are you seeing differently? What do we need to give you to keep women safer? What are the issues on a larger scale that have changed and shifted? We’re talking policy, we’re not talking about keeping women alive. And I find that very frustrating when that’s the embedded piece of our work, that’s where my heart is, and I'm being forced not to focus [on that] because now I don’t have the damn time to focus on what I feel matters more, because of these other things happening up here at this policy/governmental level. And then things – the real reason of why they fund us and why we exist in the first place, let’s take a look at that. [FG3, time 2]

The present analysis highlighted how the evolving rules environment during the first 18 months of the COVID-19 pandemic impacted service delivery to women experiencing violence. As for many health and social service sectors and organizations, inconsistency and lack of clarity in COVID-19 specific and related rules, and how they were communicated, was frustrating to all involved – leaders, staff and those receiving service – and a source of significant stress, and increasingly, exhaustion. In VAW services, however, these consequences played out in uniquely problematic ways, especially in the context of the intense, highly relational counseling, system navigation and support work undertaken within usually crowded shelters, where highly traumatized women and children find safety, begin to heal and start looking ahead to next steps. For example, when specific COVID-19 regulations, such as 14-day in-room quarantine upon arrival, were implemented, especially in precautionary ways rather than for actual outbreaks (which were very rare in Ontario’s women’s shelters), the balance between “safety from Covid-19” and “safety from violence and its traumatic effects” was lost. Isolating women in this way directly replicated a common tactic of coercively controlling partners, and everyone involved, especially staff, knew this was harmful. In a related analysis, we discuss this in more detail [ 23 ] and frame these harmful practices as both vicarious trauma and moral distress.

In the absence of consistent guidance on pandemic rules and how to implement them, many shelters filled this vacuum with creative, shelter-specific solutions to re-instate the balance noted above; this sometimes involved finding ways to work around or tailor rules to reduce harm to women and children. However, this was difficult work, compounded by the fact that unlike most health and social services, VAW services in Ontario are funded by multiple provincial Ministries Footnote 5 (primarily the Ministry of Community, Children and Social Services, but also the Ministry of the Attorney General), each with different accountabilities. During the pandemic, additional rules flowed from the Ministry of Health (MoH), sometimes directly, and sometimes via MoH’s direction to local public health units, which themselves are governed via both provincial and municipal mechanisms (i.e., legislation, Boards of Health) and funding agreements. Compounding this were federal guidelines, which while not mandatory, were part of the broader information environment, adding another point of potential confusion. Shelters often also rely on donations to fund operations, thus they also consider themselves accountable to their local communities, as well as to their feminist principles, including as advocates for women’s autonomy.

As in the broader public, there was often the perception within the shelter that the rules did not apply equally to everyone. In our data, this was expressed as a concern for women of colour, Indigenous women, or those whose first language was not English; a finding we also report in a companion analysis [ 8 ], and which emerged in an analysis from Norway, which also found differential impacts of COVID-19 on marginalized groups seeking shelter [ 24 ]. Similarly, staff felt that decisions regarding such things as who works from home, and who takes up preparing and delivering meals to women’s rooms, were not always clear, or equitable [ 23 ].

As noted above, most VAW organizations, at least in the Ontario context, had very little interaction with public health, especially at an organizational level, prior to the current pandemic. While there was some referral of individual women and children to public health programs, and in some cases onsite nurse visits, it was rare for there to be formal interactions at the leadership level, or, for example, at community coordinating tables. This lack of familiarity, in both directions, likely exacerbated the confusion among, and the negative impacts of COVID-19 regulations on, VAW services. We heard repeatedly in this data, and companion analyses, that “one size doesn’t fit all” and that regulations treating VAW shelters like other congregate settings, from long-term care to prisons, did significant harm to women, and hindered their ability to provide trauma- and violence-informed, culturally safe and equitable care. In addition, while most shelters involved in this study had emergency, and in some cases pandemic-specific, preparedness plans (usually arising from the 2009 H1N1 influenza pandemic), these were not dictated by public health, and in fact were often made moot by the deluge of COVID-19 rules coming from the various authorities.

Limitations and future research

Due to the ever-changing nature of the COVID-19 guidance being provided by multiple government and public health agencies to the participating organizations (and the VAW sector more broadly), the time frame of our data collection and analysis (over approximately 14 months), and the overall number of organizations represented in the data (24), we did not analyze the specific protocols that each participating organization was using at any given point in time, relying instead on their own experience of the myriad rules being provided, and their interpretation of how to apply them to their services. In a separate sub-study from this project examining how these regulations impacted the physical space use of shelters [ 25 ], it was clear that certain protocols were more restrictive than others, but that flexible interpretation of these could mitigate the impacts on service delivery.

Future research could examine in more depth the impact of vaccine mandates on the service environment, especially from the perspective of women using services. While Ontario’s shelters were never mandated to impose vaccine requirements for access to any form of service, including residential shelter service, community perception may have influenced women’s decisions to seek care. Staff vaccine mandates also varied, or were applied in different ways, another area warranting examination.

Implications for practice and policy

Given our integrated knowledge mobilization approach, and our use of interpretive description as an action-oriented methodology, we co-developed, with our VAW organization partners, a number of recommendations for policy and practice specific to developing and communicating rules and regulations during a crisis. These are summarized in Table 2 .

Women’s shelters during “normal” times are generally high rules environments [ 14 , 15 ], and public health rules imposed during the COVID-19 pandemic added to the existing and daily negotiations between and among staff and women, highlighting existing tensions, such as the inequities noted above, and revealing new ones. To the extent possible, and in future crisis situations, rules must be synchronized across government funders and public health authorities, and aligned with both regional contexts, and the specific context of VAW services, ideally in consultation with VAW sector leaders, which has been lacking. The work of synchronization should be done by the authorities, and not left to each sector or organization to have to interpret diverse and sometimes conflicting guidelines. This leads to both lack of compliance, but also loss of trust, and as a worst case, poorer infection control and a lack of woman-centred, trauma- and violence-informed service provision.

Availability of data and materials

The datasets generated and/or analysed during the current study are not publicly available due confidentiality provisions in the consent process, but are available from the corresponding author on reasonable request.

For the purposes of this paper, we use the term ‘rules’ to apply broadly to any written/spoken statements or unwritten/unspoken understandings regarding what should and should not be done with regard to COVID-19 at any level, ranging from individual shelter-level policies or procedures to government-level legislation, and everything inbetween.

The groups were not conducted in the same order, so numbering of quotes, below, is temporal and does not indicate the same people were in “FG3” at each time point.

In fact, vaccine mandates for clients were not, at least by time of writing, put in place for those seeking service.

Early in the pandemic, women and their children were required to self-isolate in their rooms for their initial two weeks in the shelter to avoid spreading infections they might have had on entry.

During the pandemic, the Federal government also provided one-time funds to support specific shelter activities, and, in non-pandemic times, supports “bricks and mortar” resources via the Canada Mortgage and Housing Corporation.

Abbreviations

Executive director

Focus group

Interpretive description

Knowledge mobilization

Ministry of Health

Personal protective equipment

United Nations

• Violence against women

World Health Organization

World Health Organization. Violence against women. Geneva: WHO; 2021 [cited 2022 Feb 24]. Available from: https://www.who.int/news-room/fact-sheets/detail/violence-against-women

Peterman A, Potts A, O’Donnell M, Thompson K, Shah N, Oertelt-Prigione S, et al. Pandemics and violence against women and children. CGD Working Paper 528. Washington, DC: Center for Global Development; 2020 [cited 2022 Feb 24]. Available from: https://www.cgdev.org/publication/pandemics-and-violence-against-women-and-children

United Nations. UN chief calls for domestic violence ‘ceasefire’ amid ‘horrifying global surge’. UN News [Internet]. 2020 Apr 6 [cited 2022 Feb 24]. Available from: https://news.un.org/en/story/2020/04/1061052

UN Women. Measuring the shadow pandemic: violence against women during COVID-19. New York: UN Women; 2021 [cited 2022 Feb 24]. Available from: https://data.unwomen.org/publications/vaw-rga

Dawson M. ‘Home is the most dangerous place for women,’ but private and public violence are connected. The Conversation [Internet]. 2021 Nov 24 [cited 2022 Feb 24]. Available from: https://theconversation.com/home-is-the-most-dangerous-place-for-women-but-private-and-public-violence-are-connected-171348

Canadian Femicide Observatory for Justice and Accountability. 20 women & girls killed in 31 days: https://mobile.twitter.com/CAN_Femicide/status/1488637161733771271/photo/1 2022 Feb 1 [cited 2022 Feb 24] [Tweet]. Available from: @CAN_Femicide.

World Health Organization. Addressing violence against children, women and older people during the covid-19 pandemic: key actions. Geneva: WHO; 2020 [cited 2022 Mar 8]. Available from: https://www.jstor.org/stable/resrep28197

Mantler T, Wathen CN, Burd C, MacGregor JCD, McLean I, Veenendaal J. Navigating multiple pandemics: A critical analysis of the impact of COVID-19 policy responses on gender-based violence services. Critical Social Policy. April 2022. https://doi.org/10.1177/02610183221088461 .

Dawson M, Piscitelli A. Risk factors in domestic homicides: identifying common clusters in the Canadian context. J Interpers Violence [Internet]. 2021;36(1–2):781–92. https://doi.org/10.1177/0886260517729404 .

Article   Google Scholar  

Goodhand M. Runaway wives and rogue feminists: the origins of the women’s shelter movement in Canada. Toronto: Fernwood; 2017.

Google Scholar  

Harris RM, Wathen CN, Lynch R. Assessing performance in shelters for abused women: can ‘caring citizenship’ be measured in ‘value for money’ accountability regimes? Int J of Public Admin. 2014;37(11):737–46.

Maki K. More than a bed: a national profile of VAW shelters and transition houses. Ottawa, ON: Women’s Shelters Canada; 2019 [cited 2022 Feb 24]. Available from: https://endvaw.ca/wp-content/uploads/2019/04/More-Than-a-Bed-Final-Report.pdf

Office of the Auditor General of Ontario. Section 4.10: Violence Against Women. 2015 Annual Report. Toronto, ON: Office of the Auditor General of Ontario; 2015 [cited 2022 Feb 24]. Available from: https://www.auditor.on.ca/en/content/annualreports/arreports/en15/2015AR_en_final.pdf

Wathen CN, Harris RM, Ford-Gilboe M, Hansen M. for the Ontario Shelter Research Project. What counts? A mixed-methods study to inform evaluation of shelters for abused women. Violence Against Women. 2015 21(1):125–46. https://doi.org/10.1177/1077801214564077

Kulkarni SJ, Stylianou AM, Wood L. Successful rules reduction implementation process in domestic violence shelters: from vision to practice. Soc Work. 2019;64(2):147–56. https://doi.org/10.1093/sw/swz010 .

Article   PubMed   Google Scholar  

Garcia R, Henderson C, Randell K., Villaveces A, Katz A, Abioye F, et al. The impact of the COVID-19 pandemic on intimate partner violence advocates and agencies. J Fam Viol. 2021 Oct;1–4. https://doi.org/10.1007/s10896-021-00337-7

Government of Ontario. Health Protection and Promotion Act, R.S.O. 1990, c. H.7. [cited 2022 Feb 24]. Available from: https://www.ontario.ca/laws/statute/90h07

Thorne S. Interpretive description: qualitative research for applied practice. 2nd ed. New York: Routledge; 2016.

Book   Google Scholar  

Kothari A, Wathen CN. A critical second look at integrated knowledge translation. Health Policy. 2013;109:189–91.

Kothari A, Wathen CN. Integrated knowledge translation: digging deeper, moving forward. J Epidemiol Community Health. 2017;71:619–23. https://doi.org/10.1136/jech-2016-208490 .

Mantler T, Veenendaal J, Wathen CN. Exploring the use of hotels as alternative housing by domestic violence shelters during COVID-19. Int J Homelessness. 2021;1(1):32–49. https://doi.org/10.5206/ijoh.2021.1.13642 .

Thorne S, Kirkham SR, Flynn-Magee KO. The analytic challenge in interpretive description. Int J Qual Methods. 2004;3(1):1–11. https://doi.org/10.1177/160940690400300101 .

Burd C, MacGregor JCD, Ford-Gilboe M, Mantler T, McLean I, Veenendaal J, et al. (in press). The impact of the COVID-19 pandemic on staff in violence against women services. Violence Against Women.

Bergman S, Bjørnholt M, Helseth H. Norwegian shelters for victims of domestic violence in the COVID-19 pandemic - navigating the new normal. J Fam Violence. 2021;1-11. https://doi.org/10.1007/s10896-021-00273-6 .

McLean I, Wathen CN, The Violence Against Women Services in a Pandemic Research Team. Planning shelter service spaces and structures for resilience: a spatial analysis of women’s shelters during COVID-19. Int J Homelessness. 2021 2(1):1–12. https://ojs.lib.uwo.ca/index.php/ijoh/article/view/13627/11562

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Acknowledgements

This project was a community-university research partnership. We sincerely thank our violence against women (VAW) service partners in Ontario, Canada: Jessie Rodger and AnnaLise Trudell from Anova in London, Corey Allison from Women’s Rural Resource Centre in Strathroy, Jasmine Clark from Optimism Place in Stratford; and Debbie Zweep from Faye Peterson House in Thunder Bay. We also thank the eight women, 26 staff and 24 leaders from 24 VAW services across Ontario who participated. In addition to this manuscript’s authors, the VAW Services in a Pandemic Research Team included the above partners and: Drs. Eugenia Canas, Marilyn Ford-Gilboe, Susan Rodger, and Vicki Smye from Western University. For more information: https://gtvincubator.uwo.ca/vawservicespandemic/ .

The study was funded by a Western University Catalyst Grant: Surviving Pandemics, and knowledge mobilization activities were funded by a Social Sciences and Humanities Research Council of Canada (SSHRC) Connection Grant (#611–2020-0204). Wathen is funded by a SSHRC Canada Research Chair in Mobilizing Knowledge o Gender-Based Violence. The funders were not involved in any aspect of study design, data collection or analysis, or interpretation.

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NW conceived and was principal investigator for all study activities and led the writing of this manuscript. JM and CB supported focused data interpretation and writing. All authors engaged in data coding, analysis and interpretation and read, edited and approved the final draft of this manuscript.

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Wathen, C.N., Burd, C., MacGregor, J.C.D. et al. “We’re so limited with what we actually can do if we follow all the rules”: a qualitative study of the impact of COVID-19 public health protocols on violence against women services. BMC Public Health 22 , 1175 (2022). https://doi.org/10.1186/s12889-022-13550-w

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Published on 28.5.2024 in Vol 8 (2024)

Health Care Professionals’ Experiences With Using Information and Communication Technologies in Patient Care During the COVID-19 Pandemic: Qualitative Study

Authors of this article:

Original Paper

• Carly A Cermak 1, 2 , MClSc, PhD   ; 
• Heather Read 1 , PhD   ; 
• Lianne Jeffs 1, 2, 3 , RN, PhD  

1 Science of Care Institute, Sinai Health, Toronto, ON, Canada

2 Lunenfeld-Tanenbaum Research Institute, Sinai Health, Toronto, ON, Canada

3 Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

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Carly A Cermak, MClSc, PhD

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Sinai Health

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Toronto, ON, M4M 2B5

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Background: The COVID-19 pandemic acted as a catalyst for the use of information and communication technology (ICT) in inpatient and outpatient health care settings. Digital tools were used to connect patients, families, and providers amid visitor restrictions, while web-based platforms were used to continue care amid COVID-19 lockdowns. What we have yet to learn is the experiences of health care providers (HCPs) regarding the use of ICT that supported changes to clinical care during the COVID-19 pandemic.

Objective: The aim of this paper was to describe the experiences of HCPs in using ICT to support clinical care changes during the COVID-19 pandemic. This paper is reporting on a subset of a larger body of data that examined changes to models of care during the pandemic.

Methods: This study used a qualitative, descriptive study design. In total, 30 HCPs were recruited from 3 hospitals in Canada. One-on-one semistructured interviews were conducted between December 2022 and June 2023. Qualitative data were analyzed using an inductive thematic approach to identify themes across participants.

Results: A total of 30 interviews with HCPs revealed 3 themes related to their experiences using ICT to support changes to clinical care during the COVID-19 pandemic. These included the use of ICT (1) to support in-person communication with patients, (2) to facilitate connection between provider to patient and patient to family, and (3) to provide continuity of care.

Conclusions: HCP narratives revealed the benefits of digital tools to support in-person communication between patient and provider, the need for thoughtful consideration for the use of ICT at end-of-life care, and the decision-making that is needed when choosing service delivery modality (eg, web based or in person). Moving forward, organizations are encouraged to provide education and training on how to support patient-provider communication, find ways to meet patient and family wishes at end-of-life care, and continue to give autonomy to HCPs in their clinical decision-making regarding service delivery modality.

Introduction

The health care workforce had to quickly adapt to the COVID-19 pandemic, with health systems grappling with the provision of COVID-19 care at the same time as non-COVID-19 care. Restrictions to reduce the spread of COVID-19 put an additional strain on the health care system. Health care providers (HCPs) were left to problem-solve how to continue providing compassionate, connected care among layers of personal protective equipment and visitor restrictions. Fortunately, the COVID-19 pandemic was a catalyst for digital health to support the ongoing response to the COVID-19 pandemic, with web-based care emerging as the primary innovation of information and communication technology (ICT) used in medical care [ 1 , 2 ]. Uses of ICT in medical care include remote consultations, digital noninvasive care, and digital platforms for data sharing [ 3 ].

ICT played an important role in supporting changes to clinical care within inpatient and outpatient health care settings. Within inpatient settings, ICT was integral in maintaining connectivity between patients, families, and providers when changes to visitor policies were implemented [ 4 ]. For example, the use of mobile devices and tablets allowed for connection between patient and family and supported knowledge transfer between provider and family [ 5 ]. Within outpatient settings, ICT was integral in continuing care when COVID-19 lockdown restrictions limited in-person visits [ 1 ]. For example, videoconference and telemedicine services (ie, web-based care) emerged as a platform for providers to use to allow for remote care [ 1 ]. In both facets, ICT facilitated connection, acting as an essential link between patients, families, and providers. However, we have yet to learn of HCPs’ experiences in using ICT to support clinical care.

Learning from the experiences of HCPs’ use of ICT will offer valuable insights into how innovative uses of ICT might continue to be used in inpatient and outpatient health care settings moving forward. From here, uses of ICT can inform organizational leadership of the systems or processes that may require further investigation to support ICT use in clinical care in a postpandemic world. The main objective of the study was to examine changes to models of care during the pandemic from the perspectives of HCPs, implementation team members, and leaders across 3 Canadian hospitals. For this paper, we report on a storyline that emerged from this work to describe the experiences of HCPs’ use of ICT that supported changes to clinical care during the COVID-19 pandemic.

Study Design

This qualitative descriptive study was undertaken from March 2022 to June 2023 to understand changes to models of care during the COVID-19 pandemic through the experiences of HCPs, implementation team members, and leaders across 3 hospitals in Canada. This paper is reporting on a subset of data related to HCPs’ experiences of using ICT in supporting changes to clinical care, drawn from the larger study that explored changes to models of care that took place during the COVID-19 pandemic. The reporting of this study was guided by the Standards for Reporting Qualitative Research [ 6 ].

Sampling and Participant Recruitment

In total, 30 HCPs were recruited from critical care, inpatient, and ambulatory services across 3 hospitals in Canada. A purposeful sampling strategy was used where recruiting took place in organizations that were known to have been affected by COVID-19 restrictions and policies. Site leads at participating institutions disseminated study information to HCPs (eg, nurses, physicians, and allied health disciplines) working within their respective health care organizations. From here, interview participants self-referred to this study. Inclusion criteria included current employment as an HCP working at the health care organization over the course of the pandemic and postpandemic recovery.

Data Collection

One-on-one, semistructured interviews were conducted by members of the research team (Kang Kang Margolese, Marina Morris, Lily Zeng, Marie Oliveira, Adebisi Akande, HR, Frances Bruno, or CAC) between December 2022 and June 2023. Demographic information, including age, gender, ethnicity, health discipline, time in profession, time in organization, and time in current role, was collected from all participants before the interview to ensure diversity within the sample. An interview guide was developed by the research team that explored the following five areas: (1) changes to care (eg, “What was your role like before the pandemic? How did care change over the course of the last 3 years?”), (2) provisions of care (eg, “What did you/your team start/stop doing? How did you prioritize care?”), (3) emotions (eg, “How did care change feel for you/your team? What supports were available to you?”), (4) implementation and evaluation (eg, “How were changes implemented and evaluated?”), and (5) lessons that were learned or future recommendations.

Data collection was completed by nonclinical research staff (Kang Kang Margolese, Marina Morris, Lily Zeng, Adebisi Akande, and HR) and clinical research staff (Marie Oliveira, Frances Bruno, and CAC). Data collection was concluded when saturation of themes was reached, meaning that limited new insights emerged from existing themes with the collected data sample [ 7 ]. The interviews were conducted via either a videoconferencing platform or in person and were approximately 45 to 60 minutes in length.

Ethical Considerations

Ethics was formally reviewed and approved by Sinai Health’s Research Ethics Board (REB# 22-0153-E), as well as at each participating site: Sunnybrook Health Sciences Centre (REB# 5571) and Providence Health Care (REB# H22-02792). Participants were informed that participation in this study was completely voluntary and that they could withdraw from the study at any time without penalty. Verbal informed consent was obtained before the start of the interviews, and participants were given an electronic gift card in recognition of their time. The honorarium for participants was CAD $20 (US $26.4). Demographic information was collected from all participants before the interview. These data were anonymized and stored separately from the transcripts, which were deidentified and stored on a secure server.

Data Analysis

The research design was conceived within an interpretivist paradigm, where the researchers’ purpose was to gather insight into how clinical care changed during the COVID-19 pandemic through the learning of the experiences of participants [ 8 ]. Interviews were analyzed using an inductive thematic analysis approach, which included openly coding line by line to organize data in a meaningful, systematic way; examining the codes to identify themes; and reviewing the themes [ 9 ]. Specifically, the entire research team openly coded a small group of interviews (n=3) independently, line by line, and then met as a group to review codes, discuss themes, and develop an initial codebook through consensus. From here, the research team coded the bulk of the interviews in pairs, meeting as needed to ensure the reliability of coding, using the primary investigator (LJ) to triangulate and resolve any discrepancies as needed.

Reflexivity was demonstrated through regular debriefs of interviews and a review of the codebook at 1- to 2-week intervals during the coding process. Primary adjustments were additions of new codes as interviews were collected from new participant subgroups. For example, the initial codebook was derived from nurse interviews, and new codes were required as the project expanded into allied health disciplines. Codes that related to HCPs’ experiences of ICT included disciplinary changes, technical changes and innovations, improvisation, problem-solving, tools, and technology recommendations. NVivo software (QSR International) was used to facilitate the cross-synthesis analysis. As a final step of analysis to ensure saturation and methodological rigor, the primary investigator for the study (LJ) reviewed the emergent coding schema with the original transcripts.

Participant Characteristics

A total of 30 participants (site A: n=4, site B: n=14, and site C: n=12) described their experiences of how ICT supported changes to clinical care. Table 1 presents the demographic characteristics. Themes generated from participants included the use of ICT (1) for supporting in-person communication with patients; (2) for enabling connection between patients, providers, and families; and (3) for providing continuity of care amid COVID-19 restrictions.

a HCP: health care provider.

b Participant self-identified; categories were not provided.

Supporting In-Person Communication With Patients

Participants described how tablets supported in-person communication to mitigate the impact that personal protective equipment (PPE) had on verbal interactions with patients. PPE such as masks, Plexiglas, and visors posed challenges in communicating effectively, particularly for patients who were hard of hearing or who had difficulties with comprehension. Efforts to support communication were essential as communication breakdowns created confusion for the patients with detrimental consequences:

And so when talking to elderly people, when they can’t read your lips or when they can’t really hear you through three layers of protective equipment, they get very confused and multiple confusing events leads to possible more agitation and agitation leads to an automatic write-off from a lot of health care providers as to a reason why not to provide a certain person with care. [Site B, 01, physiotherapist]

Participants described coming up with innovative ways to facilitate communication amid the layers of PPE, with tablets and phones used to break down communication barriers. Applications such as speech to text allowed live transcription of providers’ speech, which can be used as a tool to support comprehension for patients who were hearing impaired. Further, speech-to-text applications provided patients and families a model of how this tool can be used to support communication outside of the hospital setting:

And so, this [iPads] has been a huge help...it helps people, patients who haven’t heard of this...they go home with a brand-new strategy that makes their daily life so much easier. [Site C, 08, social worker]

In addition to using tablets to support communication with patients who were hard of hearing, participants also expressed the value of using tablets for translation services for patients who did not speak English. Benefits included the convenience of dialing translation services from an iPad:

We have translation services on them [iPads]...which has been so, so wonderful to have to just go into someone’s room who doesn’t speak English...And just call up this interpretation service, have a human being there and that was really a key. [Site C, 29, spiritual health practitioner]

Challenges surfaced when both a videoconferencing platform and translation services were required—specifically, the difficulties in handling 2 ICT tools simultaneously and the need to prioritize videoconferencing all the while hoping that family members were relaying information correctly:

...you can’t hold a Zoom, you know, iPad and then hold a translator phone to it, you know what I mean? So then it became family trying to find someone at their end who could relay information. [Site B, 13, occupational therapist]

Enabling Connection Between Patients, Providers, and Families

Participants described how digital devices facilitated the connection between provider to family and provider to patient during visitor restrictions. This included using phones and iPads to connect families to their loved ones in hospitals, especially at end-of-life care. Participants also described that providing a digital connection to families at end-of-life care was a service that could help families move through the grief process.

...we facilitated a FaceTime and all kinds of video calls for people to be able to talk to their loved ones. And even to their religious leaders in certain cases...Families were not able to be with a loved one when they were dying…we were a bridge between them. [Site B, 07, spiritual care]

...we recorded a memorial service that was generic and was put up on YouTube and we could send the link...And so many people just didn’t have the needed ritual to move through grief. And that was something that we could give them and that was—we received so much good feedback and gratitude for that. [Site C, 29, spiritual health practitioner]

While there were benefits of tablet use to connect families to patients at end-of-life care, a digital connection created an internal struggle for HCPs as they witnessed the lack of physical touch and difficulties in accommodating end-of-life rituals:

I feel like I struggled when I had to use an iPad to connect patients to family members and it could be in a very vulnerable situation, like a patient was dying, he doesn’t speak English, the daughter’s on the iPad, she’s crying, she can’t hold her dad, can’t hold his hand...I think we have to recognize that...there is a rite of passage before somebody dies. There are certain steps for religious people and families that need to happen to honour a dying body for them to move on to wherever that place is...So anointing, communion, confession. Those are not things that are amenable to a Zoom method. [Site B, 12, nursing]

Further, participants expressed the challenges with navigating the frequency of communication between patient and family, such as balancing family requests with staffing resources within the hospital:

...when you had multiple family members who each wanted their turn to visit once a week. Well, you know, you don’t have staff to be able to support five Facetimes per resident. So, we started to have to limit it and say...like two Facetimes a week for a family, or for a resident...So, that was a challenge. [Site B, 05, social worker]

Providing Continuity of Care

Participants described how the use of videoconferencing platforms such as Zoom (Zoom Video Communications) enhanced communication between providers and families, such as when needing to provide medical updates or discharge recommendations. Zoom provided accessible options for patients with hearing or comprehension challenges using closed captioning. Furthermore, Zoom enabled more efficient and faster communication between the care team and family, rather than being faced with the complexities of coordinating schedules of team members and families who may be coming in from out of town:

It [Zoom] optimized our efficiency for delivering family meetings...the specialist physicians were able to attend more of these family meetings than in the past, because of the ability to attend virtually. And then, more family were able to attend than...in the past. And it was able to happen faster because we could do it virtually versus waiting several days for a family member to arrive from another city. [Site B, 13, occupational therapist]

Participants also expressed the benefits of web-based care for patient access, particularly for patients with mobility challenges or lack of transportation:

I can actually say that shift [to virtual] was very positive because...it actually eliminated some of the concerns my patients have about transportation, or ways that they’re able to get out there, be it because of their physical impairment post-operation. Or simply just because they don’t have the resources to get transit for whatever reason. [Site A, 23, social worker]

Further, some participants expressed how web-based care positively changed clinical practice for counseling services:

And from all the patients I’ve intervened with...I’d say .01% want to come in person...I find that on Zoom you can sort of see the environment they’re in...I think that COVID has revolutionized social work intervention...I only have good things to say about it. COVID has opened up a whole new world for counseling. [Site B, 15, social worker]

Web-based care was not without its challenges. Clinicians described that greater access to care increased referrals from patients who would historically not come for in-person treatment, particularly for mental health services:

...we found that we were getting more referrals from ... all these different patients who would have not been able to come to hospital to do in-person groups...people with anxiety disorders, like agoraphobia. People who had not seen—have difficulty going outside the house. [Site A, 16, nursing]

...the workload increased enormously, and was impossible to keep up with because before people had to come in to [the hospital] to see me so that actually restricted the number of people that I could see to people who lived in [the city], or in some neighbouring communities. At times, people would come in and come drive like 90 to 120 minutes to come and see me but due to Covid, when we shifted to online therapy...now, everybody in [the province] had access to me who were part of these programs...many people wanted to see the psychologist because they wouldn’t have to drive in. [Site C, 16, psychologist]

Consequently, participants described that more visits over Zoom led to greater fatigue as a result of having to simultaneously navigate Zoom and in-person teaching, resulting in a reduction in group therapy frequency:

We noticed for us clinicians we were just getting so fatigued that it was just too much. Because running a group in-person, and running it over Zoom is very, very different. You’re staring at a screen, you’re looking at all the faces in the room. You’re trying to navigate the PowerPoint, there’s a lot of things happening simultaneously, that when we were doing four groups a week we just noticed this is not sustainable for us. So we had to shift it to three groups. So one less group a week. So I think that’s a huge change in terms of provision of care. [Site A, 16, nursing]

In terms of providing clinical care, clinicians described the challenges of conducting a physical assessment or providing counseling treatment via Zoom or by phone:

We do some physical examination. So it’s hard just to understand the status just by phone, even if you ask them “Any swelling?” Then they say no but actually they have, so the knowledge may not be there. [Site C, 10, registered dietician]

...in Zoom it’s very limited and you mostly see the face. Right? You don’t see what the person is doing with their hands, arms, with their legs, with their feet. [Site B, 07, spiritual care practitioner]

It’s just something about being in the same room with someone when their emotions are high that you don’t actually have to do anything in particular, but just the calming presence makes a difference. I think that people get some of that on Zoom...I don’t know how similar or different, but I’m just assuming that it’s probably a bit watered down...Whereas if I was just in the room, I think just being quiet with the person would be enough and might be even better at times. [Site C, 16, psychologist]

Finally, clinicians described the challenges of using web-based care when working with older patients due to limited experiences with technology or cognitive impairments. Interestingly, some participants felt that the reliance on web-based care reduced the attendance of older populations who were not familiar with the technology.

...our average age is 97, they’re not tech savvy, they’re not necessarily understanding, comprehending, you know, that, you know, as we would understand that you can actually talk to someone who’s not present here, but it’s in the same time...So, I would call it, you’re having a video call. I try and explain it’s that, you’re having a video telephone call. And then, they just think they’re looking at a television, you know, and they’re just watching kind of a show and stuff. [Site B, 10, recreation therapist]

Some of our clients—some people with dementia don’t understand...either they don’t recognize themselves, or they get agitated by the sight of themselves—so having the person facilitating the Zoom understand how to turn off the view that you can see yourself, was important...I think I lost a number of older spouses that used to come to the group, because they...had difficulty understanding the technology, or just their digital literacy, or access to technology wasn’t that great. So currently...and interestingly, that has changed the demographic of people who are coming in my Caregiver Group. [Site B, 08, social worker]

Principal Findings

The aim of this qualitative descriptive study was to describe the experiences of HCPs in how ICT supported changes to clinical care during the COVID-19 pandemic. Participant narratives revealed 3 key findings: the benefits of digital tools to support in-person communication between patient and provider, the need for thoughtful consideration for the use of ICT at end-of-life care, and the support for the continued use of web-based care, when appropriate. We discuss HCPs’ experiences as they relate to the literature and provide recommendations for health care organizations that can make use of ICT in a more collaborative way while reflecting on patient and family values.

Communication between patients and providers is essential for quality care and for reducing preventable adverse medical events [ 10 ]. Patients who have been appropriately supported in their communication have reported to be more satisfied in their hospital stay [ 11 ]. Devices to assist with communication, more commonly referred to as alternative augmentative communication (AAC), have existed in health care for decades. AAC is an intervention approach for individuals who require added support (augmentative) or a replacement (alternative) for their communication [ 12 ]. AAC can be low technology such as communication boards or pictures or high technology such as communication systems on iPads and speech-generation devices and can be used for a short or long period of time depending on the individual’s communication needs [ 12 ].

The COVID-19 pandemic spawned a rapid adoption of digital tools such as tablets, which became an available tool to reduce communication barriers experienced with mask-wearing when speaking to patients and families and allow for participation in conversation. Additionally, tablets enabled access to video language interpretation for patients who were mechanically ventilated and awake [ 13 ], a unique example of reducing language barriers when families were not able to be present for interpretation. However, participant narratives using digital tools within acute care and rehabilitation contrast the literature describing the experiences of patients and families in the intensive care unit. In the intensive care unit, HCPs and families reported barriers to the implementation of communication supports, particularly for patients who were mechanically ventilated and awake [ 14 ]. Nurses reported feeling inadequate and frustrated in trying to support patients [ 14 ], whereas families reported frustration with communication breakdowns, inconsistent availability of tools, and insufficient training by the HCP [ 15 ]. Patients described being mechanically ventilated as a vulnerable, lonely, and fearful experience [ 15 ], particularly as verbal communication was not an option.

The collective experiences of nurses, families, and patients emphasize the impact that a lack of communication supports can have at the bedside. Further, the experiences of nurses, families, and patients shed light on the education and training that is needed for successful patient-provider communication to support participation in conversation, particularly for patients on mechanical ventilation. Reports from speech-language pathologists working with patients who are critically ill revealed positive patient-provider communication outcomes when there was nurse collaboration and readily available communication supports at the bedside [ 13 ]. Thus, the experiences of patients, families, and HCPs highlight the integral role that leadership and hospital policies play in prioritizing communication access, tool availability, and organizational-wide training [ 13 , 16 ]. For system-level change, it is recommended that hospital leaders develop regular staff training on communication supports led by professionals with expertise in this area such as speech-language pathologists [ 14 ]. For increased awareness on the importance of communication supports in health care, it is recommended that education on patient-provider communication starts as early as the undergraduate and postgraduate level for health discipline (ie, clinical) programs [ 14 ].

Videoconferencing tools have been used to connect loved ones for over a decade and have been shown to have positive psychosocial outcomes for nursing home residents when used as an addition to in-person family visits [ 17 ]. Specifically, older residents in nursing homes who received videoconferencing visits with family in addition to in-person family visits had a greater mean change in baseline depressive symptoms and feelings of loneliness when compared to older residents who had in-person visits only [ 17 ]. During the pandemic, however, videoconferencing tools and digital devices were used as a substitute for in-person visits due to visitor restrictions imposed by the COVID-19 pandemic. Although this enabled a connection between patient and family, the reduced frequency of family connections created tensions between both HCPs and family members.

Similar tensions were described by HCPs in the United Kingdom including communicating devastating news to relatives without having ever met them in person and the moral dilemma of what is “best” end-of-life care versus what could be offered given the COVID-19 restrictions [ 18 ]. Further, clinicians in Canada reported that web-based visits at end-of-life care prevented meaningful conversations typically had between family members at the bedside [ 19 ]. One physician described the importance of family connection in end-of-life care: “I’m now convinced that family members at the bedside improves patients’ ability to get better” [ 19 ]. The experiences of bereaved relatives aligned with the internal conflicts of HCPs in the United Kingdom: families wanted frequent communication that was easy to understand, one last chance to say goodbye through physical touch, and speaking to their loved one at bedside [ 20 ]. Similarly in Canada, HCPs, patients, and families all felt that restrictive acute care visitor policies impacted the safety and quality of care, mental health of everyone involved, families as partners in care, and communication and advocacy [ 4 ].

Although COVID-19 visitor restrictions have lifted, the experiences described by clinicians and families highlight the considerations needed for a positive, meaningful, end-of-life experience. One example of an organizational-wide intervention for end-of-life care includes the 3 Wishes Project (3WP), an intervention that gathers 3 wishes from the patient and family to help personalize and humanize end-of-life care [ 21 ]. The 3WP has demonstrated a positive impact on families and clinicians; families had a significantly higher rating of emotional and spiritual support than families who did not receive the 3WP [ 22 ], while clinicians reported greater morale and collaboration in helping families move toward acceptance [ 23 ]. Further, the 3WP has shown to build capacity for compassion at the organization level by facilitating collective noticing, feeling, and responding [ 24 ]. In other words, the implementation of 3WP creates system-level processes and structures to facilitate compassionate care while promoting the connection between patients, families, and HCPs [ 24 ]. Thus, while the use of digital devices will likely continue to be a complement to care [ 25 ], it is important that organizations encourage collective, compassionate care to meet the wishes of patients and families.

Literature describing the benefits and challenges of web-based care aligned with participant narratives. Benefits included faster access to care, greater efficiency, and improved convenience for patients [ 26 ]; challenges included conducting assessments without the ability to complete in-person physical examinations [ 26 ] and offering web-based care to patients with poor digital literacy [ 27 - 29 ]. What was unique to this study’s findings was the increase in referral rates with the implementation of web-based care. Two reasons for an increase in referrals as described by participants included greater access for patients with significant mental health needs who otherwise would not come in for services and greater access for patients living far away from the hospital. Consequently, more referrals increased the workload of HCPs, demonstrating the dichotomy between patient access to care and provider workload. This emphasizes the considerations needed to balance clinician workload with patient preference of service modality as organizations move toward hybrid models of care [ 25 ].

A recent US study examined patient preference for service modality for nonurgent care and found that when out-of-pocket costs were not a factor, slightly more than half of the sample (53%) preferred in-person visits to web-based care, while one-fifth (21%) preferred web-based and one-quarter (26%) had no preference or did not know what they preferred [ 30 ]. For individuals who had video visit experience, this was associated with their preference for video visits [ 30 ]. A closer look at demographic factors revealed that those who did not feel that video calls had a role in their medical care were generally older people, who lived rurally, and who had a lower income and educational level [ 30 ]. Conversely, patients who were younger and had a higher income and education were more likely to choose a video visit over in-person care [ 30 ]. While choice of service modality may be an option for nonurgent care moving forward, some populations may not have the same ability to choose. Rather, it is up to the HCP to decide whether web-based care is appropriate.

HCPs, such as psychiatrists, who work with patients with significant mental health disorders have described the role that contextual factors contribute to decision-making of service modality [ 31 ]. Contextual factors in decision-making included if an in-person visit provided greater therapeutic benefit than a web-based visit, if a general examination was needed, if there were caregivers nearby who could provide information, if insight into the living environment was necessary, and if safety resources were required for in-person visits [ 31 ]. There was no consensus among psychiatrists on the mental health conditions that would best be served, as some respondents felt web-based care offered unique benefits such as improved patient safety and reduced likelihood of escalation [ 31 ]. Taken together, a combination of factors will need to continue to be considered for service delivery modality moving forward, such as patient preference, nature of service provided, and technology literacy. Furthermore, thoughtful planning for the accessibility of technology use for underserved populations will likely be an element of consideration for the field of health care [ 32 ].

Limitations

First, this study is limited to the experiences of the HCP from urban hospitals in Ontario and British Columbia and may not be transferable to the full scope of pandemic hospital worker experiences across the globe. Consequently, there may have been uses of ICT that happened during the pandemic that were particularly novel or interesting but may not have been captured due to the nature of this qualitative study. Second, participants were given an electronic gift card after the interview in recognition of their time, which may have impacted self-referral into the study. Third, there were several research team members involved in interviews, which may have impacted the depth of information provided by the participants across interviews.

Conclusions

Experiences from HCP highlight the uses of ICT to support changes to clinical care during the pandemic. The use of digital tools supported patient-provider communication, enabled a connection between patients and families at end-of-life care, and provided continuity of care amid COVID-19 lockdowns. Moving forward, organizations are encouraged to provide education and training on how to support patient-provider communication in clinical care; find ways to implement collaborative, compassionate, end-of-life care; and continue to give autonomy to HCPs in their clinical decision-making regarding service delivery modality.

Acknowledgments

This study was funded by a grant from the Canadian Institutes of Health Research (W12179927). The authors would like to thank the participants who took time to reflect on the difficult experiences they and their colleagues faced during the COVID-19 pandemic. The authors would also like to thank the research team of Kang Kang Margolese, Marina Morris, Lily Zeng, Marie Oliveira, Adebisi Akande, and Frances Bruno who contributed to the data collection and analysis.

Data Availability

An aggregate summary of data generated and analyzed during this study are included in this published manuscript. Individual data transcripts cannot be publicly shared because of confidentiality.

Authors' Contributions

LJ conceived and designed the study and assisted with data analysis. CAC and HR assisted with data collection and data analysis. CAC drafted the manuscript, and all authors critically reviewed it as well as read and approved the final manuscript.

Conflicts of Interest

None declared.

• Liaw ST, Kuziemsky C, Schreiber R, Jonnagaddala J, Liyanage H, Chittalia A, et al. Primary care informatics response to Covid-19 pandemic: adaptation, progress, and lessons from four countries with high ICT development. Yearb Med Inform. 2021;30(1):44-55. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Wu TC, Ho CTB. A narrative review of innovative responses during the COVID-19 pandemic in 2020. Int J Public Health. 2022;67:1604652. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Tonetto LM, Saurin TA, Fogliatto FS, Tortorella GL, Narayanamurthy G, da Rosa VM, et al. Information and communication technologies in emergency care services for patients with COVID-19: a multi-national study. Int J Prod Res. 2023;61:8384-8400. [ CrossRef ]
• Montesanti S, MacKean G, Fitzpatrick KM, Fancott C. Family caregivers as essential partners in care: examining the impacts of restrictive acute care visiting policies during the COVID-19 pandemic in Canada. BMC Health Serv Res. 2023;23(1):320. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Levido A, Clement P, Gregory B, Morrey H, Kirrane M, Stott A, et al. Virtual engagement of families in the intensive care unit during COVID-19: a descriptive survey of family members of patients and health care workers. Telemed J E Health. 2023;29(3):466-472. [ CrossRef ] [ Medline ]
• O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245-1251. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52(4):1893-1907. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Thanh NC, Thanh TTL. The interconnection between interpretivist paradigm and qualitative methods in education. Am J Educ Sci. 2015;1(2):24-27. [ FREE Full text ]
• Braun V, Clarke V. Thematic Analysis: A Practical Guide. London. SAGE Publications Ltd; 2022.
• Bartlett G, Blais R, Tamblyn R, Clermont RJ, MacGibbon B. Impact of patient communication problems on the risk of preventable adverse events in acute care settings. CMAJ. 2008;178(12):1555-1562. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Rodriguez CS, Rowe M, Thomas L, Shuster J, Koeppel B, Cairns P. Enhancing the communication of suddenly speechless critical care patients. Am J Crit Care. 2016;25(3):e40-e47. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Beukelman DR, Mirenda P. Augmentative and Alternative Communication: Supporting Children and Adults with Complex Communication Needs. Baltimore MD. Paul H. Brookes Pub; 2013.
• Scibilia SJ, Gendreau SK, Towbin RT, Happ MB. Impact of COVID-19 on patient-provider communication in critical care: case reports. Crit Care Nurse. 2022;42(4):38-46. [ CrossRef ] [ Medline ]
• Kyranou M, Cheta C, Pampoulou E. Communicating with mechanically ventilated patients who are awake. A qualitative study on the experience of critical care nurses in Cyprus during the COVID-19 pandemic. PLoS One. 2022;17(12):e0278195. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Istanboulian L, Rose L, Yunusova Y, Dale C. Barriers to and facilitators for supporting patient communication in the adult ICU during the COVID-19 pandemic: a qualitative study. J Adv Nurs. 2022;78(8):2548-2560. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Santiago R, Gormley J, Altschuler T, Howard M, Pressman H, Blackstone S. Promoting system change for communication access in acute care hospitals. Assist Technol Outcomes Benefits. 2021;15(1):100-118. [ FREE Full text ]
• Tsai HH, Tsai YF. Changes in depressive symptoms, social support, and loneliness over 1 year after a minimum 3-month videoconference program for older nursing home residents. J Med Internet Res. Nov 15, 2011;13(4):e93. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Hanna JR, Rapa E, Dalton LJ, Hughes R, Quarmby LM, McGlinchey T, et al. Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: a qualitative study. Palliat Med. 2021;35(7):1249-1257. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Elma A, Cook D, Howard M, Takaoka A, Hoad N, Swinton M, et al. Use of video technology in end-of-life care for hospitalized patients during the COVID-19 pandemic. Am J Crit Care. 2022;31(3):240-248. [ CrossRef ] [ Medline ]
• Hanna JR, Rapa E, Dalton LJ, Hughes R, McGlinchey T, Bennett KM, et al. A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic. Palliat Med. 2021;35(5):843-851. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Cook D, Swinton M, Toledo F, Clarke F, Rose T, Hand-Breckenridge T, et al. Personalizing death in the intensive care unit: the 3 Wishes Project: a mixed-methods study. Ann Intern Med. 2015;163(4):271-279. [ CrossRef ] [ Medline ]
• Neville TH, Taich Z, Walling AM, Bear D, Cook DJ, Tseng CH, et al. The 3 Wishes Program improves families' experience of emotional and spiritual support at the end of life. J Gen Intern Med. 2023;38(1):115-121. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Neville TH, Agarwal N, Swinton M, Phung P, Xu X, Kao Y, et al. Improving end-of-life care in the intensive care unit: clinicians' experiences with the 3 Wishes Project. J Palliat Med. 2019;22(12):1561-1567. [ CrossRef ] [ Medline ]
• Vanstone M, Sadik M, Smith O, Neville TH, LeBlanc A, Boyle A, et al. Building organizational compassion among teams delivering end-of-life care in the intensive care unit: the 3 Wishes Project. Palliat Med. 2020;34(9):1263-1273. [ CrossRef ] [ Medline ]
• Ng G, Desai C, Gagliardi L, Donaghy S, Di Prospero L. Implementing digital devices to maintain family connections during the COVID-19 pandemic: experience of a large academic urban hospital. J Med Imaging Radiat Sci. 2023:1-6. [ CrossRef ] [ Medline ]
• Li E, Tsopra R, Jimenez G, Serafini A, Gusso G, Lingner H, et al. General practitioners' perceptions of using virtual primary care during the COVID-19 pandemic: an international cross-sectional survey study. PLOS Digit Health. 2022;1(5):e0000029. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Curran VR, Hollett A, Peddle E. Patient experiences with virtual care during the COVID-19 pandemic: phenomenological focus group study. JMIR Form Res. 2023;7:e42966. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Chan-Nguyen S, Ritsma B, Nguyen L, Srivastava S, Shukla G, Appireddy R. Virtual care access and health equity during the COVID-19 pandemic, a qualitative study of patients with chronic diseases from Canada. Digit Health. 2022;8:20552076221074486. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Kim J, Linos E, Fishman DA, Dove MS, Hoch JS, Keegan TH. Factors associated with online patient-provider communications among cancer survivors in the United States during COVID-19: cross-sectional study. JMIR Cancer. 2023;9:e44339. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Predmore ZS, Roth E, Breslau J, Fischer SH, Uscher-Pines L. Assessment of patient preferences for telehealth in post-COVID-19 pandemic health care. JAMA Netw Open. 2021;4(12):e2136405. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Uscher-Pines L, Parks AM, Sousa J, Raja P, Mehrotra A, Huskamp HA, et al. Appropriateness of telemedicine versus in-person care: a qualitative exploration of psychiatrists' decision making. Psychiatr Serv. 2022;73(8):849-855. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Budhwani S, Fujioka J, Thomas-Jacques T, De Vera K, Challa P, De Silva R, et al. Challenges and strategies for promoting health equity in virtual care: findings and policy directions from a scoping review of reviews. J Am Med Inform Assoc. Apr 13, 2022;29(5):990-999. [ FREE Full text ] [ CrossRef ] [ Medline ]

Abbreviations

Edited by A Mavragani; submitted 24.09.23; peer-reviewed by A Ševčíková, H Pilabré, A Olsson; comments to author 02.12.23; revised version received 06.03.24; accepted 21.03.24; published 28.05.24.

©Carly A Cermak, Heather Read, Lianne Jeffs. Originally published in JMIR Formative Research (https://formative.jmir.org), 28.05.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright and license information must be included.

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

StatPearls [Internet].

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

Qualitative research, at its core, asks open-ended questions whose answers are not easily put into numbers, such as "how" and "why." [2] Due to the open-ended nature of the research questions, qualitative research design is often not linear like quantitative design. [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 complex to capture accurately and quantitatively. In contrast, a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a particular time or during an event of interest. Quantifying qualitative data certainly is possible, but at its core, qualitative data is looking for themes and patterns that can be difficult to quantify, and it is essential to ensure that the context and narrative of qualitative work are not lost by trying to quantify something that is not meant to be quantified.

However, while qualitative research is sometimes placed in opposition to quantitative research, where they are necessarily opposites and therefore "compete" against each other and the philosophical paradigms associated with each other, qualitative and quantitative work are neither necessarily opposites, nor are they incompatible. [4] While qualitative and quantitative approaches are different, they are not necessarily opposites and certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated.

Qualitative Research Approaches

Ethnography

Ethnography as a research design originates 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 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] Unlike quantitative research, which is deductive and tests or verifies an existing theory, grounded theory research is inductive and, therefore, lends itself to research aimed at social interactions or experiences. [3] [2] In essence, Grounded Theory’s goal is to explain 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 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 pretty similar, but the differences can be seen upon careful examination. At its core, phenomenology looks to investigate experiences from the individual's perspective. [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. In contrast, Phenomenology focuses on describing and explaining an event or phenomenon 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 a "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, hoping to create 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 underpinning different research approaches. Essentially, research paradigms are the "worldviews" that inform research. [4] It is valuable for qualitative and quantitative researchers 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 ontologies 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 researchers' work. [2] It is essential to understand the ontological and epistemological foundations of the research paradigm researchers are working within to allow for a complete understanding of the approach being used and the assumptions that underpin the approach as a whole. Further, researchers must 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 versus postpositivist

To further understand qualitative research, we must discuss positivist and postpositivist frameworks. Positivism is a philosophy that the scientific method can and should be applied to social and natural sciences. [4] Essentially, positivist thinking insists that the social sciences should use natural science methods in their research. It stems from positivist ontology, that there is an objective reality that exists that is wholly 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 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 also constructivist, meaning they think there is no objective external reality that exists but instead 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]  constructivist thought focuses on how "reality" is not a fixed certainty and how experiences, interactions, and backgrounds give people a unique view of the world. Constructivism contends, unlike positivist views, that there is not necessarily an "objective"reality we all experience. This is the ‘relativist’ ontological view that reality and our world 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. It can even change the role of the researchers. [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, as in postpositivist qualitative work? Understanding the philosophical base of the study undertaken allows researchers to fully understand the implications of their work and their role within the research and reflect on their 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. The following are examples of participant sampling and selection: [7]

• Purposive sampling- selection based on the researcher’s rationale for 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 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 participant-observers to share the experiences of the subject or non-participants or detached observers.

While quantitative research design prescribes a controlled environment for data collection, qualitative data collection may be in a central location or the participants' environment, 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 using 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 could also be in the form of themes and theory or model development.

Dissemination

The healthcare team can use two reporting standards to standardize and facilitate the dissemination of qualitative research outcomes. 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 more comprehensive range of qualitative research. [13]

Applications

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 to better understand what the numbers truly mean and their implications. The qualitative techniques can then help clarify the quantitative data and also help refine the hypothesis for future research. Furthermore, with qualitative research, researchers can explore poorly studied subjects with quantitative methods. These include opinions, individual actions, and social science research.

An excellent 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 no omissions of part of the target population. A proper collection method should be selected that will help obtain the desired information without overly limiting the collected data because, often, the information sought is not well categorized 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 why teens start to smoke and 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 nonsmokers). This survey provides specific numbers (ranked importance of each factor) and is thus a quantitative research tool.

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

The researcher can conduct interviews and focus groups (qualitative research) about what types and forms of peer pressure are commonly encountered, where the peer pressure comes from, and where smoking starts. The researcher hypothetically finds that peer pressure often occurs after school at the local teen hangouts, mostly in 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 to smoke. The researcher finds a local park where many local teenagers hang out and sees that the smokers tend to hang out in a shady, overgrown area of the park. The researcher notes that 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, 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 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 populations their perceptions of the changes and what factors are still at play, and quantitative research that includes teen smoking rates in the community and the incidence of new teen smokers, among others. [14] [15]

Qualitative research functions as a standalone research design or combined with quantitative research to enhance our understanding of the world. Qualitative research uses techniques including structured and unstructured interviews, focus groups, and participant observation not only to help generate hypotheses that 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 allows researchers 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 ways, including the evaluation criteria. There are four well-established criteria for evaluating quantitative data: internal validity, external validity, reliability, and objectivity. Credibility, transferability, dependability, and confirmability are the correlating concepts in qualitative research. [4] [11] The corresponding quantitative and qualitative concepts can be seen below, with the quantitative concept on the left and the qualitative concept 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, qualitative researchers should 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 data collection methods to increase the likelihood of getting a reliable and accurate result. In our above magic example, the result would be more reliable if we interviewed the magician, backstage hand, and the person who "vanished." In qualitative research, triangulation can include telephone surveys, in-person surveys, focus groups, and interviews and surveying an adequate cross-section of the target demographic.
• Peer examination: A peer can review results to ensure the data is consistent with the findings.

A "thick" or "rich" description can be used to evaluate the transferability of qualitative research, whereas an indicator such as an audit trail might help evaluate the dependability and confirmability.

• Thick or rich description:  This 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 conducted. Thick descriptions are detailed enough to allow readers to draw conclusions and interpret the data, 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 information records should also be kept (eg, surveys, notes, recordings).

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

• Hawthorne effect: The effect is the change in participant behavior when they know they are being observed. Suppose a researcher wanted to identify factors that contribute to employee theft and tell the employees they will watch them to see what factors affect employee theft. In that case, one would suspect employee behavior would change when they know they are being protected.
• Observer-expectancy effect: Some participants change their behavior or responses to satisfy the researcher's desired effect. This happens unconsciously for the participant, so it is essential to eliminate or limit the transmission of the researcher's views.
• Artificial scenario effect: Some qualitative research occurs in contrived scenarios 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 or 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 is not an island apart from quantitative research but an integral part of research methods to understand the world around us. [17]

• Enhancing Healthcare Team Outcomes

Qualitative research is essential for all healthcare team members 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 workers, 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, healthcare 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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