thematic analysis in qualitative case study research

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Home > Books > Global Social Work - Cutting Edge Issues and Critical Reflections

Thematic Analysis in Social Work: A Case Study

Submitted: 14 May 2019 Reviewed: 02 September 2019 Published: 09 December 2019

DOI: 10.5772/intechopen.89464

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The article aims to provide a step-by-step description of how thematic analysis was applied in a study examining why men choose to undertake social work as an area of study. Participants in the study came from the University of Concepción in Chile and the University of Quebec in Abitibi-Témiscamingue in Canada. The six phases of the thematic analysis are described in detail to provide students and novice social work researchers with a guide to this method of analysis. Thematic analysis offers a flexible, yet rigorous approach to subjective experience that is highly applicable to research in social work as a means of promoting social justice and combating inequalities.

• thematic analysis
• social work
• qualitative research

Author Information

Oscar labra *.

• Department of Human and Social Development, Université du Québec en Abitibi-Témiscamingue, Canada

Carol Castro

• Université du Québec en Abitibi-Témiscamingue, Canada

Robin Wright

• School of Social Work, University of Windsor, Canada

Isis Chamblas

• School of Social Work, Bío-Bío, University of Concepción, Chile

*Address all correspondence to: [email protected]

1. Introduction

There exist few detailed guidelines for thematic analysis, which represents a gap in the scientific literature. This article aims to partially remedy this scarcity by examining thematic analysis methods, drawing on the authors’ experiences as social work researchers, particularly as pertains to a case study. The present study is a six-step guide addressed specifically to students and novice researchers.

Thematic analysis has gained increasing currency in various branches of social work research, such as qualitative analysis [ 1 , 2 , 3 ], aboriginal research [ 4 ], resilience studies [ 5 ], the practice of social work in healthcare [ 6 , 7 , 8 ], and minors [ 9 , 10 ]. Nevertheless, little has been written on the specific adaptations and modulations that thematic analysis requires for use in social work research if it is to reflect the field’s specific preoccupations. It is important to note from the outset that thematic analysis in qualitative research is an empirical inductive approach to collect data.

The particular importance of qualitative research methods, such as thematic analysis, for social work is that these approaches can also serve to promote social justice and combat inequalities. Qualitative methods allow researchers to transmit people’s ideas, perceptions, and opinions by analyzing and disseminating participant discourses. This “speech act” is based on the values that guide social work, namely, respect for personal and collective rights, as well as a recognition of the need to perceive and understand human beings as constituents of an interdependent system that carries the potential for change. In employing qualitative research methods, social work researchers have a responsibility to promote social change and contribute to resolve social problems by analyzing and disseminating collected testimonies, which also serve as a basis from which to formulate future research and intervention paths. No other research methods have the same capacity to give voice to the disenfranchised in order to foster social change.

In order to contextualize the discussion of thematic analysis, the following section will first explore the broader framework of qualitative research. Why is qualitative research well suited to social work? After examining potential answers to this question, the discussion will then proceed to its core subject: thematic analysis and its usefulness in social work research, demonstrated by specific examples from fieldwork. This constitutes the primary aim of the present article.

2. Qualitative research and its relevance for social work

Qualitative methods are an established component of research models in various branches of inquiry, including social work, and have been used by social work researchers studying a range of dimensions, such as the family [ 11 , 12 , 13 , 14 ], women [ 15 , 16 , 17 ], children [ 18 , 19 , 20 , 21 ], and mental health services [ 18 , 22 , 23 , 24 ]. Thus, qualitative research methods have served to develop various domains of social work intervention ( Table 1 ).

Characteristics of qualitative research.

Source: Deslauriers [ 25 ]; Guba [ 26 ]; Hatch [ 27 ]; Hernández Sampieri et al. [ 28 ]; Marshall and Rossman [ 29 ]; Morse and Richards [ 30 ].

Over the past three decades, many authors have proposed varying definitions of qualitative research. Table 2 shows the major components of those definitions, providing clues as to the fundamental elements of the “DNA” of qualitative research and their relevance for social work.

Qualitative research criteria.

3. Applications of qualitative research

The elaboration of a research protocol or project requires asking whether qualitative research is relevant to the study’s methods and goals. The choice to adopt a qualitative approach is generally based on at least one of the criteria presented in Table 3 .

Research questions typology.

These seven elements represent contexts in which qualitative research is apposite. In order to demonstrate the application of these elements in fieldwork, Table 3 presents examples of questions used by the authors in previous qualitative studies.

Qualitative research includes a range of analytical methods applicable in various contexts. Those that appear to be adopted most often include phenomenographic analysis, phenomenological analysis, grounded theory (GT), case studies [ 32 ], narrative analysis [ 31 ], content analysis [ 33 , 34 , 35 ], participatory action research [ 36 , 37 , 38 ], aboriginal research [ 39 , 40 , 41 ], discourse analysis [ 42 , 43 , 44 , 45 ], and systematic analysis [ 46 , 47 ].

4. Defining thematic analysis

The definition of thematic analysis adopted in the present paper is that of a method that allows researchers to identify and organize relevant themes and subthemes, which can then be used as units of analysis [ 48 , 49 ] in subsequent detailed re-readings of a data set [ 50 ], through which researchers increasingly familiarize themselves with the data and explore the meanings associated with the concepts emerging from participant testimonies [ 51 , 52 ]. The central operation of thematic analysis, therefore, is thematization [ 53 ]. It is important to specify that “data set” refers to all materials compiled within the scope of a given study: transcripts of interviews conducted with participants, written testimonies, verbal communications, study objectives, and research questions, as well as all other relevant materials, which can include newspaper articles, annual research reports, and social work intervention reports, among others.

Repeated readings of a data set are necessary for the identification of the most salient significations in the collected materials. It is through these processes that researchers can reveal the affective, cognitive, and symbolic dimensions of the assembled data.

Social work research should seek to address issues of social justice and inequality or, at the very least, should not contribute to deficit constructions of marginalized populations by failing to acknowledge issues of discrimination and oppression.

5. The phases of thematic analysis

Thematic analysis involves six phases (see Figure 1 ). For the purposes of the present discussion, these phases will be described using examples from the authors’ experiences during a previous study, in which one of the main research themes was the reasons why certain men choose professions socially viewed as feminine [ 54 ]. The study involved 26 male participants enrolled in social work university programs: 13 in Chile and 13 in the Canadian province of Québec. The research question was exploratory, since no previous studies had addressed the issue directly; the thematic analysis, therefore, required a high degree of interpretation to fully grasp the significations emerging from participant testimonies. Specifically, the research question sought to discover the motivations, obstacles, and positive reference points, which characterized men’s interest in social work, a profession socially viewed as feminine. The following extensive discussion will refer to examples from the aforementioned study in order to examine in detail the methodological progression of the six phases of thematic analysis.

Thematic analysis: Six interactive phases.

Presentation of results.

It is essential to note that the six phases presented in Figure 2 overlap and interact: the phases are not exclusively successive, since there is a measure of recursion involved, in what is nevertheless a generally linear process. These characteristics indicate that thematic analysis is a flexible yet rigorous method of data analysis (see Figure 1 ). Three distinct approaches may be applied to thematic analysis: deductive (when themes are defined at the outset, prior to analyses), inductive (when themes emerge in the course of analysis), or, frequently, a deductive-inductive combination.

5.1 Phase 1: Familiarization with collected data

The first phase begins with the task of transcribing audio recordings of individual or group interviews carried out in the course of the study. The next step involves proceeding through initial readings of the transcripts in order to find the most salient significations in the participants’ testimonies. The material must be read thoroughly, attentively and analytically, particularly in order to identify those elements that may at first seem banal, yet frequently crucial to understanding the significations of a participants’ discourse.

Several techniques can help researchers to structure their first readings of the material. For example, an initial coding chart allows for the clear identification of excerpts that appear immediately relevant. As well, researchers familiar with thematic analysis frequently make annotations in the margins of transcripts or highlight in color certain excerpts that appear to be particularly significant.

The following excerpt and the comments cited below illustrate one researcher’s initial observations following a first reading of material collected in the course of a study:

Q: Which factors influenced your career choice?

A: I have a childhood friend who is a SW [social worker] and I went to talk with him. He told me about the main orientations of the profession, and I took the decision to enter this line of work. So it was the advice of a friend that helped me to make my decision to undertake social work, which I had not really thought about when I was in high school. It came from these conversations with this friend about the program, and I feel that I do not regret this decision. (Chilean participant No. 8, page 54)

The meanings identified in the testimony of Participant No. 8 were that: a) the participant had a close relationship with a social worker who influenced his career choice; b) the participant wanted to learn about the profession before deciding to undertake it; c) the profession’s orientations attracted the participant; d) the participant had not chosen a career path upon completing his secondary education; and e) the participant was satisfied with his choice of studies.

The example demonstrates that even a short interview excerpt can be a rich source of information, in this case indicating the various factors that characterized and influenced the participant’s choice to study toward a career in social work.

It is worth noting that qualitative data software, such as Nvivo®, presents additional coding capabilities and is in widespread use. For the purposes of the present study, however, the researchers opted to employ a manual coding technique.

Listening to and transcribing participant interviews.

Before undertaking readings of the material, it is helpful to construct an initial coding chart on which researchers can record their first impressions of the readings; this coding chart may identify the participant’s pseudonym, the specific excerpt in question, the transcript page number, and the signification or observation noted.

It is useful, as well, to keep the study objectives physically visible or close at hand for quick reference; this is especially recommended if the researcher carrying out the thematic analysis did not personally carry out the interviews or did not participate in the elaboration of the research project.

Initial readings of the material should be carried out repetitively, without at first overly focusing on particular details, in order to develop a familiarity with the raw data collected from participants. Examples of questions to keep in my mind during these first readings include:

What is this person trying to say?

Why are they talking about that in this particular way?

How should I interpret what I am reading?

In order to maintain familiarity with the raw data, repeated readings must be carried out in close succession, which contributes to a fuller understanding of participant testimonies and their significations. Researchers must keep in mind that they are scrutinizing the data for any and all information that relates to the research question and study objectives.

During these surface readings of the data set, researchers should use the initial coding chart to note any emerging elements that seem unfamiliar, interesting, or specifically related to the study question and objectives.

It is possible that following a few initial readings, researchers will be able to identify certain elements of data as themes (normally, this operation is not carried out until Phase 3). It is advisable in these instances to proceed cautiously, noting all pertinent elements on the coding chart and continuing to progress through the readings while noting elements that appear related to the theme, but refraining from premature definition.

Within a constructivist perspective, in the first phase of thematic analysis, the researcher adopts a subjectivist epistemological approach the reality under study. In the course of this process, researcher and respondent become a mutually constructed unit. The results, therefore, are the products of interactions between their realities ([ 26 ] in [ 55 ]:p. 17). In this process of production, social work researchers must maintain consciously reflexive, in order to minimize the potential effects of their prejudices or opinions, which could otherwise deform or falsify interpretation.

It is always preferable that the researcher carrying out the readings be the same person that carried out interviews with participants; this will place the researcher in a better epistemological position to ensure continuity throughout the thematic analysis process. If someone else is tasked with carrying out the readings, it is imperative that they become highly familiar with all aspects of the research project before beginning their analyses.

5.2 Phase 2: Generating initial codes

In this second phase, the researcher will use information identified as relevant in Phase 1 to generate initial codes. At the outset, researchers begin grouping elements of data according to similarities or perceived patterns: these are initial codes (see Tables 4 and 5 ). This ordering of the data is necessary to develop a comprehensive perspective on the participants’ latent or semantic discourse. An experienced researcher will likely proceed more quickly through this process; indeed, some researchers frequently combine the first two phases of thematic analysis.

Coding chart: Chile students.

Coding chart: Quebec students.

To begin, a code is a type of raw data extracted from interviews and field notes. These include words or phrases that are representative of groups or patterns of data (see Table 4 ). Miles and Huberman [ 56 ] identify three types of codes. The first is descriptive codes, which require very little interpretation. The second is interpretive codes, which represent data that require a certain depth of interpretation in order to be fully understood. The third type is inferential codes, relating to data that are explicative and indicate causal relationships.

Within the classification elaborated by Miles and Huberman [ 56 ], therefore, the examples presented in this article largely correspond to the descriptive type. When identifying descriptive codes, researchers have two options: using words or phrases drawn directly from participant testimonies (Level 1) or, where more appropriate, making reference to concepts drawn from relevant theory. The body of accumulated conceptual knowledge allows social work researchers to contextualize problems under study and more fully understand participants’ subjective reality. Social work researchers must remain conscious, however, of how their hypotheses influence their formulations of research questions, objectives, and resulting methodological choices that necessarily precede their analyses.

In order to systematically classify the information, codes and interview excerpts should be grouped in relation to clearly identify study objectives, as shown in Tables 4 and 5 . Particularly for researchers unfamiliar with thematic analysis, this method is effective in developing a better grasp of the classification processes involved in classifying generated data within the scope of defined study objectives.

Codes are always a combination of the descriptive and interpretive. This is evident in the preliminary codes cited in Tables 4 and 5 .

It is important to note that this method does not require codes to be generated for every line of transcript in the data set. Depending on interview type, a data set typically contains between 7000 and 9000 words, or close to 700 lines. A code can represent two, three, or more lines of transcript. It is always advisable to begin by working with the specific words used by participants (Level 1) and only after repeated readings to begin establishing links with concepts drawn from theory (Level 2), as in Table 6 , for example.

Thematic matrix.

Phase 2 concludes once all the elements of the data set have been coded. It is important to note that there is no minimum or maximum number of codes to be generated from a data set: the number is determined by each researcher’s judgment in assessing what is or is not pertinent, a skill that develops over time, in the course of work with transcripts.

5.3 Phase 3: Searching for themes

In qualitative research, a theme (sometimes also termed “category”) [ 31 ] is an element of data or sequence of words that can serve as a synoptic and accurate representation of the signification that interviewed participants attribute to an object, phenomenon, or situation. A theme, therefore, is composed of coded data grouped together according to similarities or patterns.

The search for themes is open ended, and the number and variety of results will depend on how systematically and thoroughly the first two phases were carried out. The process involves identification, differentiation, recombination, and grouping: certain themes will emerge distinctly from the data, others will be the product of either identifying more than one theme in what at first appeared to be one integral category, while others will emerge from the fusion of two or more themes that initially appeared distinct; themes that are divergent, yet related, may also be grouped into broader categories. With certain data sets, yet another level of classification will map the hierarchical relationships between themes. For Crabtree and Miller [ 57 ], the process of linking themes leads to the discovery of yet other themes and patterns in the data, that is, it generates overarching themes and allows for the identification of broad connections. This process of grouping distinct elements identified within a data set into themes constitutes the core task of thematic analysis.

In the example of the study discussed in the present article, data collected from interviews with Chilean and Québec students 1 were coded according to the study’s primary objective. As Table 7 demonstrates, a primary theme was identified in reference to theory (influence of life trajectory), while three subthemes emerged from the coded data.

Final thematic matrix.

Table 6 demonstrates how a primary theme connects three subthemes generated from seven distinct codes. In this example, the motivations to pursue social work of Chilean and Québec students participating in the study were all grouped in the primary theme “Influence of life trajectory.”

As mentioned above, there are no guidelines dictating minimum or maximum numbers of themes or subthemes to identify in a given study, independent of particular factors, such as number of participants. It is of utmost importance that themes and subthemes be delineated precisely in order to represent accurately and comprehensively the complexity of data collected from study participants. Themes therefore will vary qualitatively, substantively, and quantitatively from one study to another. In the example cited, a single-primary theme proved sufficiently broad to represent the significations derived from the data, enabling the authors to answer the research question and achieve the study objective.

A method useful in Phase 3 is to elaborate a coding sheet on which to classify elements of data that could not be precisely categorized in Phase 2 or that do not appear directly linked with the research question or study objectives. These data can prove highly relevant later, as additional themes are identified.

reading through the coding generated during Phase 2 (see Table 5 ), from right to left, in order to verify the accuracy of the identified elements of data;

assessing the correlation of codes with interview excerpts, as well as their relevance in relation to study objectives;

grouping the coded information in reference to concepts or sequences of words according to similarities or patterns: this is the identification of themes;

reviewing the identified themes in order to further categorize subthemes, overarching themes, or groups of themes, as the case may be; and

reading the material in order to identify hierarchical relationships between the themes.

Throughout this process, it is essential to keep in mind the stated study objectives, as well as to question continually whether the codes, themes, and subthemes are relevant to the research question and study objectives or whether they fall beyond the delineated scope of the study. It is important to point out that the themes and subthemes in which codes are grouped can represent concepts drawn from theory or original categories elaborated by the researcher. The epistemological challenge for researchers is to remain analytical in relation to the data that emerge from this phase of coding and to analyze them with reference to theory.

Phase 3 culminates in the elaboration of a thematic matrix that demonstrates connections between themes, subthemes, and codes (see Table 7 ). The matrix offers a clear overview of the ordered complexity of the relationships identified within the data set. It is useful, as well, to include within the matrix a column listing the study objectives or research question, providing an easily accessible reference with which to verify the relevance of data to the stated research goals.

5.4 Phase 4: Reviewing the themes

A comprehensive description of a given phenomenon requires a systematic review of the themes identified in Phase 3. Although, for the purposes of discussion, Phase 4 is identified as distinct from and subsequent to Phase 3, in practice researchers familiar with thematic analysis will frequently carry out the two phases simultaneously.

Is this a theme, subtheme, or code?

Does the theme accurately represent the data with which it is linked (codes and interview excerpts)?

Is the theme too abstract or difficult to understand or, conversely, is it so specific that it cannot be linked more broadly with data?

Is there a clearly identifiable logic to the hierarchical relationships between themes, subthemes, and codes (i.e., clear distinction between broader categories and more specific elements, as in Table 7 ?

Which data do the theme include and which do these exclude?

Is the theme a good representation of the subthemes? Are the subthemes a good representation of the codes?

Does the thematic matrix contain the information necessary to answer the research question and the study objectives?

These questions allow the researcher to assess the validity of the matrix and the coherence of its components. As in the preceding steps, validating the relevance of each element and the links between them is essential to ensuring the authenticity of results. It is important, however, to nuance the notion of validity. In qualitative research, a result is only considered valid if it is reproducible, that is, if it is not an individual occurrence of a given observation. Validity, moreover, may be internal or external. Internal validity refers to the degree to which valid conclusions can be drawn from a study, based on an assessment of all research parameters. External validity is the degree to which internally valid results may be extrapolated beyond specific study samples and settings, that is, to people and contexts other than those considered in the study.

A range of factors may have an incidence on a study’s internal validity, including participants’ personal histories, maturation and pretest habituation, participant selection, experimental mortality, and instrument bias. External validity is subject to other factors, such as interaction between historical factors and interventions, the effect of reactivity (that is, participants’ awareness of taking part in a study resulting changes in behavior), and researcher bias.

Researchers must also take into account other dimensions of validity relevant to social work research, for example, reflexive practice in collaboration with other researchers [ 58 ], data triangulation [ 59 , 60 ], and iterative research that allows participants to react to interpretations of previous results.

A detailed, comprehensive review of the thematic matrix frequently results in adjustments, including changes to the designations and relative positions of codes and themes, as well as the outright deletion of certain themes and subthemes that are not relevant to the research question (see Table 7 ). As a result of this review process, it is often necessary to rename themes that prove unclear, inaccurate, or disconnected from the identified codes. In such cases, themes are said to have evolved. As with each step of each phase, it is through the practice of these operations that researchers unfamiliar with thematic analysis will develop a better grasp of its techniques.

A comparison between Tables 6 and 7 illustrates this process. In this case, the subthemes initially identified as referring to experiences were adjusted in Table 7 to represent motivations. A second important change consisted in adjusting the code designated in Table 6 as “educational performance,” in order to further specify “ good educational performance” in Table 7 . A final change made to the thematic matrix concerned the position of the “ parental influence ” code, which had been placed in the “professional trajectory” subtheme in Table 7 but, subsequent to review, was placed within the “personal motivations” subtheme in Table 7 . In this example, the other data in the matrix remained unchanged following the Phase 4 review (see Table 7 ).

A valuable method of ensuring that the themes, subthemes, and codes are clearly delineated and appropriately positioned is to submit the thematic matrix to additional review by one or two researchers uninvolved in the study who are familiar with thematic analysis methods. If the reliability analysis process is successful, that is, if the independent reviewers concur that the themes reliably represent the codes derived from the data set to which they are linked within the matrix, the thematic analysis can proceed to Phase 5.

5.5 Phase 5: Defining and naming themes

Phase 5 consists of two major stages. First, the themes and subthemes undergo a definitive revision. Thus, the thematic matrix must once again be analyzed thoroughly in order to assess the validity of hierarchical relationships and verify whether the designations given at both levels are an accurate reflection of the significations represented by the codes. It is essential that names given to the themes be revised repeatedly, until no ambiguities remain as to their accuracy. The second stage of Phase 5 is interpretive and consists in the conceptual definition of the themes and subthemes that will be subject to analysis in Phase 6.

Educational motivations: an individual’s [student’s] capacity to construct short- and long-term objectives [in their educational trajectory], notwithstanding difficulties. It is through motivation that needs are transformed into objectives and projects [ 61 , 62 ].

Personal motivations: the choice, energy, and direction of behavior [ 63 ].

Professional motivations: the set of dynamic factors that determine an individual’s [student’s] interest in succeeding [in the chosen profession] [ 64 ].

In defining themes, it is advisable to refer exclusively to specialized reference works conventionally accepted in relevant fields of study, such as dictionaries or encyclopedias of social work, education, or sociology, depending on the focus of a given study.

It is important to mention that the boundary between Phases 4 and 5 may be difficult to pinpoint, since both involve a revision of the themes. The distinction lies in that the final revision and conclusive assessment of themes in Phase 5 is the culmination of the repeated reviews of designations, categories, and relationships performed in Phase 4. In Phase 5, therefore, the researcher’s principal task is to define and name the themes, in reference to all the operations performed in the previous phases, ensuring that they faithfully represent the significations emerging from the data set.

5.6 Phase 6: Presenting and discussing results

Whether to be included in a book, article, or other form of publication, the crux of the material supporting the results presented and discussed is to be found in notes taken by researchers during interviews with participants and the thematic matrix developed in Phase 3 and revised in Phase 4. For the purposes of the present discussion, it is worthwhile to address the two main components of Phase 6, presentation and discussion, as distinct from one another.

In the presentation of results, researchers must produce a clear and coherent description that makes reference the data outlined in the thematic matrix. The presentation should be accompanied by explanations and clarifications sufficient for readers unfamiliar with the specific area of study to understand the results without room for erroneous interpretation. It is highly advisable to quote interview excerpts that are particularly illustrative of the assertions and conclusions described.

A clear presentation of data outlined in the thematic matrix should reflect the order of the hierarchical relationships between the themes and subthemes. In the study of Chilean and Québec students enrolled in social work programs described in the present article, the primary theme of “ influence of life trajectories ” integrated all subthemes and associated codes. The presentation of results, therefore, began with a description of the primary theme and then proceeded through a descriptive and coherent account, supported by illustrative interview excerpts, that outlined all relevant elements of data, beginning with the most broadly inclusive (primary theme) and proceeding toward the most specific (codes).

This is clearly evident in the following excerpt of the presentation of results in the study involving male social work students in Chile and Québec, which provides valuable examples of thematic analysis methods.

This section will first present the motivations that prompt Chilean and Québec male students’ choices to undertake social work. […] On the personal level, the two primary motivations that emerge from the testimonies of Chilean students are the desire to help others and the appeal of social work as a vocation, followed in the order of importance by the influence of family or social circle members who had studied social work.

The following excerpt from the testimony of one student (1) illustrates the motivation to help others and undertake social work as a vocation: “I went into social work […] to be able to help people. I believe that this is the factor that made me enrol” (René). The testimonies of Québec students, however, suggest that their strong motivations are attributable to good relationships with family, specifically parents [who had worked in the health system], and negative personal experiences in the past, among others. The testimony of one participant typifies this primary motivation of most Québec students participating in the present study: “The fact of having two parents who work in the health system. Since I was little, I have been going to hospitals and I have seen how it all works” (Simon) [ 54 ].

It is important that the presentation of results remains descriptive, as in the example cited above. The logical question to ask at this point is: when does the presentation of results end? The answer, too, is logical: when the relevant elements of the final subtheme have been presented. In the study cited above, therefore, the presentation concludes with a description of the professional motivations subtheme (see Table 7 ). Once the results have been comprehensively presented, they must subsequently be discussed.

In the discussion, researchers must address the presented results within an analytical perspective. As in the example cited below, the discussion makes reference to the broader literature relevant to the phenomenon under study:

The present study offers comparative and complementary views on the various dimensions associated with the motivations of men who engage in social work. Participants’ answers to the question “ What made you choose social work studies ?”, suggest that their motivations are varie, “multifactorial” [ 65 ] and linked with life trajectories. At the level of the sub-category of “educational motivations,” it appears that Chilean men seek cognitive and technical skills with which to achieve their goal of social change. The results suggest that these men aspire to the values of social work (EASSW, 2015 [3]) and a more humanist and just society in which social work occupies a position of importance among social science professions. These motivations originate in two factors. One is the participants’ social engagement prior to enrolling in university studies. The other is their personal orientation towards humanist values. In the case of participants from Québec, their main motivations lie in good results obtained during pre-university social science studies, which inspired them to undertake social work at university. Our results corroborate a number of previous studies [ 54 , 66 , 67 ].

The above excerpt illustrates how the discussion builds on the description of results in order to produce an analytical discourse that compares and contrasts the results and conclusions of the study with those of other studies and authors.

The discussion should follow the same order of themes as in the presentation of results.

It should underscore and further develop those themes that most closely correlate with the stated study objectives; it is not always possible to address all the obtained results within the discussion; therefore, a capacity to synthesize is particularly useful at this last stage of the thematic analysis.

The discussion must be framed analytically; the goal is to go beyond the descriptive, in order to demonstrate why the results are meaningful within the context of previous research.

7. Conclusion

As a qualitative research method that offers a simultaneously flexible and rigorous approach to data, thematic analysis allows social work students and novice social work researchers to approach the discourses, opinions, and visions of respondents both analytically. These qualities make it particularly applicable to social work research. Thematic analysis also represents the intellectual and ethic challenge, for experienced and novice researchers alike, of attempting to reveal and interpret themes and subthemes in the participants’ discourse. The ethical challenge for researchers is to avoid substituting personal objectives for research objectives, since this may impact the interpretation of data collected from participants and, consequently, skew study results.

The other challenge facing social work researchers employing thematic analysis is to keep their subjectivity in check. When describing and categorizing testimonies of human experiences, perspectives, and emotions, whether expressed in words or communicated inadvertently by respondents through behavior during interviews, researchers must remain especially vigilant so that their author’s own personal histories and professional experiences do not contaminate their interpretation of the data, altering the significance of participant testimonies. Indeed, this reflects one of the fundamental principles of social work practice and research methodologies that knowledge and techniques must always be applied methodically and objectively.

From the example that is present in this work and following the six stages of the thematic analysis, the researcher can draw inspiration to use this method of analysis and to apply other research designs. Finally, the qualitative research in Trabajo Social students from the two participating universities allowed us to use thematic analysis to better understand the motivations, difficulties, and anchors that make students from two different realities interest in social work.

Limitations

The thematic analysis approach discussed in the present paper must be interpreted with prudence. The article cited above provides a case example of how thematic analysis was applied in one study examining why men choose to undertake social work as an area of study. An additional limitation is the difficulty for researchers to ignore previous, tacit knowledge, which may have influenced the analysis of results [ 68 ]. Furthermore, the construction of certain themes and subthemes cited in Labra [ 54 ] may have been influenced by social desirability, that is, formulated so as to correspond with researchers’ expectations, given that Nvivo® software was not used to manage qualitative data. Nevertheless, the research design of the case example presented above, in which the interview guide was elaborated in reference to both the specific problem under study and a directly relevant conceptual framework, constitutes a significant element underpinning the validity of the thematic analysis approach.

We would like to thank Normand Brodeur, professor at the School of Social Work of Laval University, Canada, and Hugo Asselin, professor at the School of Aboriginal Studies of the University of Abitibi-Témiscamingue, Canada, for the reading and his valuable recommendations to this article. Similarly, we would like to thank in a very special way Carlos Contreras and Jorge Lara, students of the School of Social Work of the University of Concepción, Chile, who have been testing through research verbatim, the phases of the thematic analysis described in this article.

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• This study was built on the analysis of interviews with twenty-six (n = 26) students: 13 are respondents enrolled in a social work program at the University of Québec in Abitibi-Témiscamingue (UQAT) in Canada and the thirteen others enrolled in a social work program at a university of Concepción. The first participants were recruited by way of e-mail messages sent to male students enrolled at the University of Concepción and of University of Quebec in Abitibi-Témiscamingue on in undergraduate social work studies for the winter semesters of 2014 and 2015. The rest were recruited using the "snowball".

© 2019 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution 3.0 License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Practical thematic analysis: a guide for multidisciplinary health services research teams engaging in qualitative analysis

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• Peer review
• Catherine H Saunders , scientist and assistant professor 1 2 ,
• Ailyn Sierpe , research project coordinator 2 ,
• Christian von Plessen , senior physician 3 ,
• Alice M Kennedy , research project manager 2 4 ,
• Laura C Leviton , senior adviser 5 ,
• Steven L Bernstein , chief research officer 1 ,
• Jenaya Goldwag , resident physician 1 ,
• Joel R King , research assistant 2 ,
• Christine M Marx , patient associate 6 ,
• Jacqueline A Pogue , research project manager 2 ,
• Richard K Saunders , staff physician 1 ,
• Aricca Van Citters , senior research scientist 2 ,
• Renata W Yen , doctoral student 2 ,
• Glyn Elwyn , professor 2 ,
• JoAnna K Leyenaar , associate professor 1 2
• on behalf of the Coproduction Laboratory
• 1 Dartmouth Health, Lebanon, NH, USA
• 2 Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, Lebanon, NH, USA
• 3 Center for Primary Care and Public Health (Unisanté), Lausanne, Switzerland
• 4 Jönköping Academy for Improvement of Health and Welfare, School of Health and Welfare, Jönköping University, Jönköping, Sweden
• 5 Highland Park, NJ, USA
• 6 Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St Louis, MO, USA
• Correspondence to: C H Saunders catherine.hylas.saunders{at}dartmouth.edu
• Accepted 26 April 2023

Qualitative research methods explore and provide deep contextual understanding of real world issues, including people’s beliefs, perspectives, and experiences. Whether through analysis of interviews, focus groups, structured observation, or multimedia data, qualitative methods offer unique insights in applied health services research that other approaches cannot deliver. However, many clinicians and researchers hesitate to use these methods, or might not use them effectively, which can leave relevant areas of inquiry inadequately explored. Thematic analysis is one of the most common and flexible methods to examine qualitative data collected in health services research. This article offers practical thematic analysis as a step-by-step approach to qualitative analysis for health services researchers, with a focus on accessibility for patients, care partners, clinicians, and others new to thematic analysis. Along with detailed instructions covering three steps of reading, coding, and theming, the article includes additional novel and practical guidance on how to draft effective codes, conduct a thematic analysis session, and develop meaningful themes. This approach aims to improve consistency and rigor in thematic analysis, while also making this method more accessible for multidisciplinary research teams.

Through qualitative methods, researchers can provide deep contextual understanding of real world issues, and generate new knowledge to inform hypotheses, theories, research, and clinical care. Approaches to data collection are varied, including interviews, focus groups, structured observation, and analysis of multimedia data, with qualitative research questions aimed at understanding the how and why of human experience. 1 2 Qualitative methods produce unique insights in applied health services research that other approaches cannot deliver. In particular, researchers acknowledge that thematic analysis is a flexible and powerful method of systematically generating robust qualitative research findings by identifying, analysing, and reporting patterns (themes) within data. 3 4 5 6 Although qualitative methods are increasingly valued for answering clinical research questions, many researchers are unsure how to apply them or consider them too time consuming to be useful in responding to practical challenges 7 or pressing situations such as public health emergencies. 8 Consequently, researchers might hesitate to use them, or use them improperly. 9 10 11

Although much has been written about how to perform thematic analysis, practical guidance for non-specialists is sparse. 3 5 6 12 13 In the multidisciplinary field of health services research, qualitative data analysis can confound experienced researchers and novices alike, which can stoke concerns about rigor, particularly for those more familiar with quantitative approaches. 14 Since qualitative methods are an area of specialisation, support from experts is beneficial. However, because non-specialist perspectives can enhance data interpretation and enrich findings, there is a case for making thematic analysis easier, more rapid, and more efficient, 8 particularly for patients, care partners, clinicians, and other stakeholders. A practical guide to thematic analysis might encourage those on the ground to use these methods in their work, unearthing insights that would otherwise remain undiscovered.

Given the need for more accessible qualitative analysis approaches, we present a simple, rigorous, and efficient three step guide for practical thematic analysis. We include new guidance on the mechanics of thematic analysis, including developing codes, constructing meaningful themes, and hosting a thematic analysis session. We also discuss common pitfalls in thematic analysis and how to avoid them.

Summary points

Qualitative methods are increasingly valued in applied health services research, but multidisciplinary research teams often lack accessible step-by-step guidance and might struggle to use these approaches

A newly developed approach, practical thematic analysis, uses three simple steps: reading, coding, and theming

Based on Braun and Clarke’s reflexive thematic analysis, our streamlined yet rigorous approach is designed for multidisciplinary health services research teams, including patients, care partners, and clinicians

This article also provides companion materials including a slide presentation for teaching practical thematic analysis to research teams, a sample thematic analysis session agenda, a theme coproduction template for use during the session, and guidance on using standardised reporting criteria for qualitative research

In their seminal work, Braun and Clarke developed a six phase approach to reflexive thematic analysis. 4 12 We built on their method to develop practical thematic analysis ( box 1 , fig 1 ), which is a simplified and instructive approach that retains the substantive elements of their six phases. Braun and Clarke’s phase 1 (familiarising yourself with the dataset) is represented in our first step of reading. Phase 2 (coding) remains as our second step of coding. Phases 3 (generating initial themes), 4 (developing and reviewing themes), and 5 (refining, defining, and naming themes) are represented in our third step of theming. Phase 6 (writing up) also occurs during this third step of theming, but after a thematic analysis session. 4 12

Key features and applications of practical thematic analysis

Step 1: reading.

All manuscript authors read the data

All manuscript authors write summary memos

Step 2: Coding

Coders perform both data management and early data analysis

Codes are complete thoughts or sentences, not categories

Step 3: Theming

Researchers host a thematic analysis session and share different perspectives

Themes are complete thoughts or sentences, not categories

Applications

For use by practicing clinicians, patients and care partners, students, interdisciplinary teams, and those new to qualitative research

When important insights from healthcare professionals are inaccessible because they do not have qualitative methods training

When time and resources are limited

Steps in practical thematic analysis

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We present linear steps, but as qualitative research is usually iterative, so too is thematic analysis. 15 Qualitative researchers circle back to earlier work to check whether their interpretations still make sense in the light of additional insights, adapting as necessary. While we focus here on the practical application of thematic analysis in health services research, we recognise our approach exists in the context of the broader literature on thematic analysis and the theoretical underpinnings of qualitative methods as a whole. For a more detailed discussion of these theoretical points, as well as other methods widely used in health services research, we recommend reviewing the sources outlined in supplemental material 1. A strong and nuanced understanding of the context and underlying principles of thematic analysis will allow for higher quality research. 16

Practical thematic analysis is a highly flexible approach that can draw out valuable findings and generate new hypotheses, including in cases with a lack of previous research to build on. The approach can also be used with a variety of data, such as transcripts from interviews or focus groups, patient encounter transcripts, professional publications, observational field notes, and online activity logs. Importantly, successful practical thematic analysis is predicated on having high quality data collected with rigorous methods. We do not describe qualitative research design or data collection here. 11 17

In supplemental material 1, we summarise the foundational methods, concepts, and terminology in qualitative research. Along with our guide below, we include a companion slide presentation for teaching practical thematic analysis to research teams in supplemental material 2. We provide a theme coproduction template for teams to use during thematic analysis sessions in supplemental material 3. Our method aligns with the major qualitative reporting frameworks, including the Consolidated Criteria for Reporting Qualitative Research (COREQ). 18 We indicate the corresponding step in practical thematic analysis for each COREQ item in supplemental material 4.

Familiarisation and memoing

We encourage all manuscript authors to review the full dataset (eg, interview transcripts) to familiarise themselves with it. This task is most critical for those who will later be engaged in the coding and theming steps. Although time consuming, it is the best way to involve team members in the intellectual work of data interpretation, so that they can contribute to the analysis and contextualise the results. If this task is not feasible given time limitations or large quantities of data, the data can be divided across team members. In this case, each piece of data should be read by at least two individuals who ideally represent different professional roles or perspectives.

We recommend that researchers reflect on the data and independently write memos, defined as brief notes on thoughts and questions that arise during reading, and a summary of their impressions of the dataset. 2 19 Memoing is an opportunity to gain insights from varying perspectives, particularly from patients, care partners, clinicians, and others. It also gives researchers the opportunity to begin to scope which elements of and concepts in the dataset are relevant to the research question.

Data saturation

The concept of data saturation ( box 2 ) is a foundation of qualitative research. It is defined as the point in analysis at which new data tend to be redundant of data already collected. 21 Qualitative researchers are expected to report their approach to data saturation. 18 Because thematic analysis is iterative, the team should discuss saturation throughout the entire process, beginning with data collection and continuing through all steps of the analysis. 22 During step 1 (reading), team members might discuss data saturation in the context of summary memos. Conversations about saturation continue during step 2 (coding), with confirmation that saturation has been achieved during step 3 (theming). As a rule of thumb, researchers can often achieve saturation in 9-17 interviews or 4-8 focus groups, but this will vary depending on the specific characteristics of the study. 23

Data saturation in context

Braun and Clarke discourage the use of data saturation to determine sample size (eg, number of interviews), because it assumes that there is an objective truth to be captured in the data (sometimes known as a positivist perspective). 20 Qualitative researchers often try to avoid positivist approaches, arguing that there is no one true way of seeing the world, and will instead aim to gather multiple perspectives. 5 Although this theoretical debate with qualitative methods is important, we recognise that a priori estimates of saturation are often needed, particularly for investigators newer to qualitative research who might want a more pragmatic and applied approach. In addition, saturation based, sample size estimation can be particularly helpful in grant proposals. However, researchers should still follow a priori sample size estimation with a discussion to confirm saturation has been achieved.

Definition of coding

We describe codes as labels for concepts in the data that are directly relevant to the study objective. Historically, the purpose of coding was to distil the large amount of data collected into conceptually similar buckets so that researchers could review it in aggregate and identify key themes. 5 24 We advocate for a more analytical approach than is typical with thematic analysis. With our method, coding is both the foundation for and the beginning of thematic analysis—that is, early data analysis, management, and reduction occur simultaneously rather than as different steps. This approach moves the team more efficiently towards being able to describe themes.

Building the coding team

Coders are the research team members who directly assign codes to the data, reading all material and systematically labelling relevant data with appropriate codes. Ideally, at least two researchers would code every discrete data document, such as one interview transcript. 25 If this task is not possible, individual coders can each code a subset of the data that is carefully selected for key characteristics (sometimes known as purposive selection). 26 When using this approach, we recommend that at least 10% of data be coded by two or more coders to ensure consistency in codebook application. We also recommend coding teams of no more than four to five people, for practical reasons concerning maintaining consistency.

Clinicians, patients, and care partners bring unique perspectives to coding and enrich the analytical process. 27 Therefore, we recommend choosing coders with a mix of relevant experiences so that they can challenge and contextualise each other’s interpretations based on their own perspectives and opinions ( box 3 ). We recommend including both coders who collected the data and those who are naive to it, if possible, given their different perspectives. We also recommend all coders review the summary memos from the reading step so that key concepts identified by those not involved in coding can be integrated into the analytical process. In practice, this review means coding the memos themselves and discussing them during the code development process. This approach ensures that the team considers a diversity of perspectives.

Coding teams in context

The recommendation to use multiple coders is a departure from Braun and Clarke. 28 29 When the views, experiences, and training of each coder (sometimes known as positionality) 30 are carefully considered, having multiple coders can enhance interpretation and enrich findings. When these perspectives are combined in a team setting, researchers can create shared meaning from the data. Along with the practical consideration of distributing the workload, 31 inclusion of these multiple perspectives increases the overall quality of the analysis by mitigating the impact of any one coder’s perspective. 30

Coding tools

Qualitative analysis software facilitates coding and managing large datasets but does not perform the analytical work. The researchers must perform the analysis themselves. Most programs support queries and collaborative coding by multiple users. 32 Important factors to consider when choosing software can include accessibility, cost, interoperability, the look and feel of code reports, and the ease of colour coding and merging codes. Coders can also use low tech solutions, including highlighters, word processors, or spreadsheets.

Drafting effective codes

To draft effective codes, we recommend that the coders review each document line by line. 33 As they progress, they can assign codes to segments of data representing passages of interest. 34 Coders can also assign multiple codes to the same passage. Consensus among coders on what constitutes a minimum or maximum amount of text for assigning a code is helpful. As a general rule, meaningful segments of text for coding are shorter than one paragraph, but longer than a few words. Coders should keep the study objective in mind when determining which data are relevant ( box 4 ).

Code types in context

Similar to Braun and Clarke’s approach, practical thematic analysis does not specify whether codes are based on what is evident from the data (sometimes known as semantic) or whether they are based on what can be inferred at a deeper level from the data (sometimes known as latent). 4 12 35 It also does not specify whether they are derived from the data (sometimes known as inductive) or determined ahead of time (sometimes known as deductive). 11 35 Instead, it should be noted that health services researchers conducting qualitative studies often adopt all these approaches to coding (sometimes known as hybrid analysis). 3

In practical thematic analysis, codes should be more descriptive than general categorical labels that simply group data with shared characteristics. At a minimum, codes should form a complete (or full) thought. An easy way to conceptualise full thought codes is as complete sentences with subjects and verbs ( table 1 ), although full sentence coding is not always necessary. With full thought codes, researchers think about the data more deeply and capture this insight in the codes. This coding facilitates the entire analytical process and is especially valuable when moving from codes to broader themes. Experienced qualitative researchers often intuitively use full thought or sentence codes, but this practice has not been explicitly articulated as a path to higher quality coding elsewhere in the literature. 6

Example transcript with codes used in practical thematic analysis 36

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Depending on the nature of the data, codes might either fall into flat categories or be arranged hierarchically. Flat categories are most common when the data deal with topics on the same conceptual level. In other words, one topic is not a subset of another topic. By contrast, hierarchical codes are more appropriate for concepts that naturally fall above or below each other. Hierarchical coding can also be a useful form of data management and might be necessary when working with a large or complex dataset. 5 Codes grouped into these categories can also make it easier to naturally transition into generating themes from the initial codes. 5 These decisions between flat versus hierarchical coding are part of the work of the coding team. In both cases, coders should ensure that their code structures are guided by their research questions.

Developing the codebook

A codebook is a shared document that lists code labels and comprehensive descriptions for each code, as well as examples observed within the data. Good code descriptions are precise and specific so that coders can consistently assign the same codes to relevant data or articulate why another coder would do so. Codebook development is iterative and involves input from the entire coding team. However, as those closest to the data, coders must resist undue influence, real or perceived, from other team members with conflicting opinions—it is important to mitigate the risk that more senior researchers, like principal investigators, exert undue influence on the coders’ perspectives.

In practical thematic analysis, coders begin codebook development by independently coding a small portion of the data, such as two to three transcripts or other units of analysis. Coders then individually produce their initial codebooks. This task will require them to reflect on, organise, and clarify codes. The coders then meet to reconcile the draft codebooks, which can often be difficult, as some coders tend to lump several concepts together while others will split them into more specific codes. Discussing disagreements and negotiating consensus are necessary parts of early data analysis. Once the codebook is relatively stable, we recommend soliciting input on the codes from all manuscript authors. Yet, coders must ultimately be empowered to finalise the details so that they are comfortable working with the codebook across a large quantity of data.

Assigning codes to the data

After developing the codebook, coders will use it to assign codes to the remaining data. While the codebook’s overall structure should remain constant, coders might continue to add codes corresponding to any new concepts observed in the data. If new codes are added, coders should review the data they have already coded and determine whether the new codes apply. Qualitative data analysis software can be useful for editing or merging codes.

We recommend that coders periodically compare their code occurrences ( box 5 ), with more frequent check-ins if substantial disagreements occur. In the event of large discrepancies in the codes assigned, coders should revise the codebook to ensure that code descriptions are sufficiently clear and comprehensive to support coding alignment going forward. Because coding is an iterative process, the team can adjust the codebook as needed. 5 28 29

Quantitative coding in context

Researchers should generally avoid reporting code counts in thematic analysis. However, counts can be a useful proxy in maintaining alignment between coders on key concepts. 26 In practice, therefore, researchers should make sure that all coders working on the same piece of data assign the same codes with a similar pattern and that their memoing and overall assessment of the data are aligned. 37 However, the frequency of a code alone is not an indicator of its importance. It is more important that coders agree on the most salient points in the data; reviewing and discussing summary memos can be helpful here. 5

Researchers might disagree on whether or not to calculate and report inter-rater reliability. We note that quantitative tests for agreement, such as kappa statistics or intraclass correlation coefficients, can be distracting and might not provide meaningful results in qualitative analyses. Similarly, Braun and Clarke argue that expecting perfect alignment on coding is inconsistent with the goal of co-constructing meaning. 28 29 Overall consensus on codes’ salience and contributions to themes is the most important factor.

Definition of themes

Themes are meta-constructs that rise above codes and unite the dataset ( box 6 , fig 2 ). They should be clearly evident, repeated throughout the dataset, and relevant to the research questions. 38 While codes are often explicit descriptions of the content in the dataset, themes are usually more conceptual and knit the codes together. 39 Some researchers hypothesise that theme development is loosely described in the literature because qualitative researchers simply intuit themes during the analytical process. 39 In practical thematic analysis, we offer a concrete process that should make developing meaningful themes straightforward.

Themes in context

According to Braun and Clarke, a theme “captures something important about the data in relation to the research question and represents some level of patterned response or meaning within the data set.” 4 Similarly, Braun and Clarke advise against themes as domain summaries. While different approaches can draw out themes from codes, the process begins by identifying patterns. 28 35 Like Braun and Clarke and others, we recommend that researchers consider the salience of certain themes, their prevalence in the dataset, and their keyness (ie, how relevant the themes are to the overarching research questions). 4 12 34

Use of themes in practical thematic analysis

Constructing meaningful themes

After coding all the data, each coder should independently reflect on the team’s summary memos (step 1), the codebook (step 2), and the coded data itself to develop draft themes (step 3). It can be illuminating for coders to review all excerpts associated with each code, so that they derive themes directly from the data. Researchers should remain focused on the research question during this step, so that themes have a clear relation with the overall project aim. Use of qualitative analysis software will make it easy to view each segment of data tagged with each code. Themes might neatly correspond to groups of codes. Or—more likely—they will unite codes and data in unexpected ways. A whiteboard or presentation slides might be helpful to organise, craft, and revise themes. We also provide a template for coproducing themes (supplemental material 3). As with codebook justification, team members will ideally produce individual drafts of the themes that they have identified in the data. They can then discuss these with the group and reach alignment or consensus on the final themes.

The team should ensure that all themes are salient, meaning that they are: supported by the data, relevant to the study objectives, and important. Similar to codes, themes are framed as complete thoughts or sentences, not categories. While codes and themes might appear to be similar to each other, the key distinction is that the themes represent a broader concept. Table 2 shows examples of codes and their corresponding themes from a previously published project that used practical thematic analysis. 36 Identifying three to four key themes that comprise a broader overarching theme is a useful approach. Themes can also have subthemes, if appropriate. 40 41 42 43 44

Example codes with themes in practical thematic analysis 36

Thematic analysis session

After each coder has independently produced draft themes, a carefully selected subset of the manuscript team meets for a thematic analysis session ( table 3 ). The purpose of this session is to discuss and reach alignment or consensus on the final themes. We recommend a session of three to five hours, either in-person or virtually.

Example agenda of thematic analysis session

The composition of the thematic analysis session team is important, as each person’s perspectives will shape the results. This group is usually a small subset of the broader research team, with three to seven individuals. We recommend that primary and senior authors work together to include people with diverse experiences related to the research topic. They should aim for a range of personalities and professional identities, particularly those of clinicians, trainees, patients, and care partners. At a minimum, all coders and primary and senior authors should participate in the thematic analysis session.

The session begins with each coder presenting their draft themes with supporting quotes from the data. 5 Through respectful and collaborative deliberation, the group will develop a shared set of final themes.

One team member facilitates the session. A firm, confident, and consistent facilitation style with good listening skills is critical. For practical reasons, this person is not usually one of the primary coders. Hierarchies in teams cannot be entirely flattened, but acknowledging them and appointing an external facilitator can reduce their impact. The facilitator can ensure that all voices are heard. For example, they might ask for perspectives from patient partners or more junior researchers, and follow up on comments from senior researchers to say, “We have heard your perspective and it is important; we want to make sure all perspectives in the room are equally considered.” Or, “I hear [senior person] is offering [x] idea, I’d like to hear other perspectives in the room.” The role of the facilitator is critical in the thematic analysis session. The facilitator might also privately discuss with more senior researchers, such as principal investigators and senior authors, the importance of being aware of their influence over others and respecting and eliciting the perspectives of more junior researchers, such as patients, care partners, and students.

To our knowledge, this discrete thematic analysis session is a novel contribution of practical thematic analysis. It helps efficiently incorporate diverse perspectives using the session agenda and theme coproduction template (supplemental material 3) and makes the process of constructing themes transparent to the entire research team.

Writing the report

We recommend beginning the results narrative with a summary of all relevant themes emerging from the analysis, followed by a subheading for each theme. Each subsection begins with a brief description of the theme and is illustrated with relevant quotes, which are contextualised and explained. The write-up should not simply be a list, but should contain meaningful analysis and insight from the researchers, including descriptions of how different stakeholders might have experienced a particular situation differently or unexpectedly.

In addition to weaving quotes into the results narrative, quotes can be presented in a table. This strategy is a particularly helpful when submitting to clinical journals with tight word count limitations. Quote tables might also be effective in illustrating areas of agreement and disagreement across stakeholder groups, with columns representing different groups and rows representing each theme or subtheme. Quotes should include an anonymous label for each participant and any relevant characteristics, such as role or gender. The aim is to produce rich descriptions. 5 We recommend against repeating quotations across multiple themes in the report, so as to avoid confusion. The template for coproducing themes (supplemental material 3) allows documentation of quotes supporting each theme, which might also be useful during report writing.

Visual illustrations such as a thematic map or figure of the findings can help communicate themes efficiently. 4 36 42 44 If a figure is not possible, a simple list can suffice. 36 Both must clearly present the main themes with subthemes. Thematic figures can facilitate confirmation that the researchers’ interpretations reflect the study populations’ perspectives (sometimes known as member checking), because authors can invite discussions about the figure and descriptions of findings and supporting quotes. 46 This process can enhance the validity of the results. 46

In supplemental material 4, we provide additional guidance on reporting thematic analysis consistent with COREQ. 18 Commonly used in health services research, COREQ outlines a standardised list of items to be included in qualitative research reports ( box 7 ).

Reporting in context

We note that use of COREQ or any other reporting guidelines does not in itself produce high quality work and should not be used as a substitute for general methodological rigor. Rather, researchers must consider rigor throughout the entire research process. As the issue of how to conceptualise and achieve rigorous qualitative research continues to be debated, 47 48 we encourage researchers to explicitly discuss how they have looked at methodological rigor in their reports. Specifically, we point researchers to Braun and Clarke’s 2021 tool for evaluating thematic analysis manuscripts for publication (“Twenty questions to guide assessment of TA [thematic analysis] research quality”). 16

Avoiding common pitfalls

Awareness of common mistakes can help researchers avoid improper use of qualitative methods. Improper use can, for example, prevent researchers from developing meaningful themes and can risk drawing inappropriate conclusions from the data. Braun and Clarke also warn of poor quality in qualitative research, noting that “coherence and integrity of published research does not always hold.” 16

Weak themes

An important distinction between high and low quality themes is that high quality themes are descriptive and complete thoughts. As such, they often contain subjects and verbs, and can be expressed as full sentences ( table 2 ). Themes that are simply descriptive categories or topics could fail to impart meaningful knowledge beyond categorisation. 16 49 50

Researchers will often move from coding directly to writing up themes, without performing the work of theming or hosting a thematic analysis session. Skipping concerted theming often results in themes that look more like categories than unifying threads across the data.

Unfocused analysis

Because data collection for qualitative research is often semi-structured (eg, interviews, focus groups), not all data will be directly relevant to the research question at hand. To avoid unfocused analysis and a correspondingly unfocused manuscript, we recommend that all team members keep the research objective in front of them at every stage, from reading to coding to theming. During the thematic analysis session, we recommend that the research question be written on a whiteboard so that all team members can refer back to it, and so that the facilitator can ensure that conversations about themes occur in the context of this question. Consistently focusing on the research question can help to ensure that the final report directly answers it, as opposed to the many other interesting insights that might emerge during the qualitative research process. Such insights can be picked up in a secondary analysis if desired.

Inappropriate quantification

Presenting findings quantitatively (eg, “We found 18 instances of participants mentioning safety concerns about the vaccines”) is generally undesirable in practical thematic analysis reporting. 51 Descriptive terms are more appropriate (eg, “participants had substantial concerns about the vaccines,” or “several participants were concerned about this”). This descriptive presentation is critical because qualitative data might not be consistently elicited across participants, meaning that some individuals might share certain information while others do not, simply based on how conversations evolve. Additionally, qualitative research does not aim to draw inferences outside its specific sample. Emphasising numbers in thematic analysis can lead to readers incorrectly generalising the findings. Although peer reviewers unfamiliar with thematic analysis often request this type of quantification, practitioners of practical thematic analysis can confidently defend their decision to avoid it. If quantification is methodologically important, we recommend simultaneously conducting a survey or incorporating standardised interview techniques into the interview guide. 11

Neglecting group dynamics

Researchers should concertedly consider group dynamics in the research team. Particular attention should be paid to power relations and the personality of team members, which can include aspects such as who most often speaks, who defines concepts, and who resolves disagreements that might arise within the group. 52

The perspectives of patient and care partners are particularly important to cultivate. Ideally, patient partners are meaningfully embedded in studies from start to finish, not just for practical thematic analysis. 53 Meaningful engagement can build trust, which makes it easier for patient partners to ask questions, request clarification, and share their perspectives. Professional team members should actively encourage patient partners by emphasising that their expertise is critically important and valued. Noting when a patient partner might be best positioned to offer their perspective can be particularly powerful.

Insufficient time allocation

Researchers must allocate enough time to complete thematic analysis. Working with qualitative data takes time, especially because it is often not a linear process. As the strength of thematic analysis lies in its ability to make use of the rich details and complexities of the data, we recommend careful planning for the time required to read and code each document.

Estimating the necessary time can be challenging. For step 1 (reading), researchers can roughly calculate the time required based on the time needed to read and reflect on one piece of data. For step 2 (coding), the total amount of time needed can be extrapolated from the time needed to code one document during codebook development. We also recommend three to five hours for the thematic analysis session itself, although coders will need to independently develop their draft themes beforehand. Although the time required for practical thematic analysis is variable, teams should be able to estimate their own required effort with these guidelines.

Practical thematic analysis builds on the foundational work of Braun and Clarke. 4 16 We have reframed their six phase process into three condensed steps of reading, coding, and theming. While we have maintained important elements of Braun and Clarke’s reflexive thematic analysis, we believe that practical thematic analysis is conceptually simpler and easier to teach to less experienced researchers and non-researcher stakeholders. For teams with different levels of familiarity with qualitative methods, this approach presents a clear roadmap to the reading, coding, and theming of qualitative data. Our practical thematic analysis approach promotes efficient learning by doing—experiential learning. 12 29 Practical thematic analysis avoids the risk of relying on complex descriptions of methods and theory and places more emphasis on obtaining meaningful insights from those close to real world clinical environments. Although practical thematic analysis can be used to perform intensive theory based analyses, it lends itself more readily to accelerated, pragmatic approaches.

Strengths and limitations

Our approach is designed to smooth the qualitative analysis process and yield high quality themes. Yet, researchers should note that poorly performed analyses will still produce low quality results. Practical thematic analysis is a qualitative analytical approach; it does not look at study design, data collection, or other important elements of qualitative research. It also might not be the right choice for every qualitative research project. We recommend it for applied health services research questions, where diverse perspectives and simplicity might be valuable.

We also urge researchers to improve internal validity through triangulation methods, such as member checking (supplemental material 1). 46 Member checking could include soliciting input on high level themes, theme definitions, and quotations from participants. This approach might increase rigor.

Implications

We hope that by providing clear and simple instructions for practical thematic analysis, a broader range of researchers will be more inclined to use these methods. Increased transparency and familiarity with qualitative approaches can enhance researchers’ ability to both interpret qualitative studies and offer up new findings themselves. In addition, it can have usefulness in training and reporting. A major strength of this approach is to facilitate meaningful inclusion of patient and care partner perspectives, because their lived experiences can be particularly valuable in data interpretation and the resulting findings. 11 30 As clinicians are especially pressed for time, they might also appreciate a practical set of instructions that can be immediately used to leverage their insights and access to patients and clinical settings, and increase the impact of qualitative research through timely results. 8

Practical thematic analysis is a simplified approach to performing thematic analysis in health services research, a field where the experiences of patients, care partners, and clinicians are of inherent interest. We hope that it will be accessible to those individuals new to qualitative methods, including patients, care partners, clinicians, and other health services researchers. We intend to empower multidisciplinary research teams to explore unanswered questions and make new, important, and rigorous contributions to our understanding of important clinical and health systems research.

Acknowledgments

All members of the Coproduction Laboratory provided input that shaped this manuscript during laboratory meetings. We acknowledge advice from Elizabeth Carpenter-Song, an expert in qualitative methods.

Coproduction Laboratory group contributors: Stephanie C Acquilano ( http://orcid.org/0000-0002-1215-5531 ), Julie Doherty ( http://orcid.org/0000-0002-5279-6536 ), Rachel C Forcino ( http://orcid.org/0000-0001-9938-4830 ), Tina Foster ( http://orcid.org/0000-0001-6239-4031 ), Megan Holthoff, Christopher R Jacobs ( http://orcid.org/0000-0001-5324-8657 ), Lisa C Johnson ( http://orcid.org/0000-0001-7448-4931 ), Elaine T Kiriakopoulos, Kathryn Kirkland ( http://orcid.org/0000-0002-9851-926X ), Meredith A MacMartin ( http://orcid.org/0000-0002-6614-6091 ), Emily A Morgan, Eugene Nelson, Elizabeth O’Donnell, Brant Oliver ( http://orcid.org/0000-0002-7399-622X ), Danielle Schubbe ( http://orcid.org/0000-0002-9858-1805 ), Gabrielle Stevens ( http://orcid.org/0000-0001-9001-178X ), Rachael P Thomeer ( http://orcid.org/0000-0002-5974-3840 ).

Contributors: Practical thematic analysis, an approach designed for multidisciplinary health services teams new to qualitative research, was based on CHS’s experiences teaching thematic analysis to clinical teams and students. We have drawn heavily from qualitative methods literature. CHS is the guarantor of the article. CHS, AS, CvP, AMK, JRK, and JAP contributed to drafting the manuscript. AS, JG, CMM, JAP, and RWY provided feedback on their experiences using practical thematic analysis. CvP, LCL, SLB, AVC, GE, and JKL advised on qualitative methods in health services research, given extensive experience. All authors meaningfully edited the manuscript content, including AVC and RKS. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.

Funding: This manuscript did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Competing interests: All authors have completed the ICMJE uniform disclosure form at https://www.icmje.org/disclosure-of-interest/ and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

Provenance and peer review: Not commissioned; externally peer reviewed.

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Attempting rigour and replicability in thematic analysis of qualitative research data; a case study of codebook development

Affiliations.

• 1 Department of Primary Health Care & General Practice, University of Otago, Wellington, New Zealand. [email protected].
• 2 Department of Primary Health Care & General Practice, University of Otago, Wellington, New Zealand.
• 3 Bioethics Centre, University of Otago, Dunedin, New Zealand.
• PMID: 30922220
• PMCID: PMC6437927
• DOI: 10.1186/s12874-019-0707-y

Background: Navigating the world of qualitative thematic analysis can be challenging. This is compounded by the fact that detailed descriptions of methods are often omitted from qualitative discussions. While qualitative research methodologies are now mature, there often remains a lack of fine detail in their description both at submitted peer reviewed article level and in textbooks. As one of research's aims is to determine the relationship between knowledge and practice through the demonstration of rigour, more detailed descriptions of methods could prove useful. Rigour in quantitative research is often determined through detailed explanation allowing replication, but the ability to replicate is often not considered appropriate in qualitative research. However, a well described qualitative methodology could demonstrate and ensure the same effect.

Methods: This article details the codebook development which contributed to thematic analysis of qualitative data. This analysis formed part of a mixed methods multiphase design research project, with both qualitative and quantitative inquiry and involving the convergence of data and analyses. This design consisted of three distinct phases: quantitative, qualitative and implementation phases.

Results and conclusions: This article is aimed at researchers and doctoral students new to thematic analysis by describing a framework to assist their processes. The detailed description of the methods used supports attempts to utilise the thematic analysis process and to determine rigour to support the establishment of credibility. This process will assist practitioners to be confident that the knowledge and claims contained within research are transferable to their practice. The approach described within this article builds on, and enhances, current accepted models.

Keywords: Codebook; Coding; Qualitative research; Rigour; Thematic analysis.

• Evidence-Based Medicine / methods
• Evidence-Based Medicine / statistics & numerical data*
• Health Knowledge, Attitudes, Practice
• Health Services Research / methods
• Health Services Research / statistics & numerical data*
• Qualitative Research*
• Reproducibility of Results
• Research Design*

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• v.21(12); 2021 Dec

General-purpose thematic analysis: a useful qualitative method for anaesthesia research

1 Centre for Medical and Health Sciences Education, School of Medicine, University of Auckland, Auckland, New Zealand

2 Department of Anaesthesia, Auckland City Hospital, Auckland, New Zealand

Learning objectives

By reading this article, you should be able to:

• • Explain when to use thematic analysis.
• • Describe the steps in thematic analysis of interview data.
• • Critique the quality of a study that uses the method of thematic analysis.
• • Thematic analysis is a popular method for systematically analysing qualitative data, such as interview and focus group transcripts.
• • It is one of a cluster of methods that focus on identifying patterns of meaning, or themes, across a data set.
• • It is relevant to many questions in perioperative medicine and a good starting point for those new to qualitative research.
• • Systematic approaches to thematically analysing data exist, with key components to demonstrate rigour, accountability, confirmability and reliability.
• • In one study, a useful six-step approach to analysing data is offered.

Anaesthesia research commonly uses quantitative methods, such as surveys, RCTs or observational studies. Such methods are often concerned with answering what questions and how many questions. Qualitative research is more concerned with why questions that enable us to understand social complexities. ‘Qualitative studies in the anaesthetic setting’, write Shelton and colleagues, ‘have been used to define excellence in anaesthesia, explore the reasons behind drug errors, investigate the acquisition of expertise and examine incentives for hand hygiene in the operating theatre’. 1

General-purpose thematic analysis (termed thematic analysis hereafter) is a qualitative research method commonly used with interview and focus group data to understand people's experiences, ideas and perceptions about a given topic. Thematic analysis is a good starting point for those new to qualitative research and is relevant to many questions in the perioperative context. It can be used to understand the experiences of healthcare professionals and patients and their families. Box 1 gives examples of questions amenable to thematic analysis in anaesthesia research.

Examples of questions amenable to thematic analysis.

• (i) How do operating theatre staff feel about speaking up with their concerns?
• (ii) What are trainee's conceptions of the balance between service and learning?
• (iii) What are patients' experiences of preoperative neurocognitive screening?

Alt-text: Box 1

Thematic analysis involves a process of assigning data to a number of codes, grouping codes into themes and then identifying patterns and interconnections between these themes. 2 Thematic analysis allows for a nuanced understanding of what people say and do within their particular social contexts. Of note, thematic analysis can be used with interviews and focus groups and other sources of data, such as documents or images.

Thematic analysis is not the same as content analysis. Content analysis involves counting the frequency with which words or phrases appear in data. Content analysis is a method used to code and categorise textual information systematically to determine trends, frequency and patterns of words used. 3 Conversely, thematic analysis focuses on the relative importance of ideas and how ideas connect and govern practices. Thematic analysis does not rely on frequency counts to indicate the importance of coded data. Content analysis can be coupled with thematic analysis, where both themes and frequencies of particular statements or words are reported.

Thematic analysis is a research method, not a methodology. A methodology is a method with a philosophical underpinning. If researchers report only on what they did, this is the method. If, in addition, they report on the philosophy that governed what they did, this is methodology. Common methodologies in qualitative research include phenomenology, grounded theory, hermeneutics, narrative enquiry and ethnography. 4 Each of these methodologies has associated methods for data analysis. Thematic analysis can be combined with many different qualitative methodologies.

There are also different types of thematic analysis, such as inductive (including general purpose), applied, deductive or semantic thematic analysis. Inductive analysis involves approaching the data with an open mind, inductively looking for patterns and themes and interpreting these for meaning. 2 , 4 Of note, researchers can never have a truly open mind on their topic of interest, so the process will be influenced by their particular perspectives, which need to be declared. In applied and deductive thematic analysis, the researcher will have a pre-existing framework (which may be informed by theory or philosophy) against which they will attempt to categorise the data. 4 , 5 , 6 For semantic thematic analysis, the data are coded on explicit content, and tend to be descriptive rather than interpretative. 6

In this review, we outline what thematic analysis entails and when to use it. We also list some markers to look for to appraise the quality of a published study.

Designing the data collection

Before embarking on qualitative research, as with quantitative research, it is important to seek ethical review of the proposed study. Ethical considerations include such issues as consent, data security and confidentiality, permission to use quotes, potential for identifying individuals or institutions, risk of psychological harm to participants with studies on sensitive issues (e.g. suicide or sexual harassment), power relationships between interviewer and interviewee or intrusion on other activities (such as teaching time or work commitments). 7

Qualitative research often involves asking people questions during interviews or focus groups. Merriam and Tisdell stated that, ‘The most common form of interview is the person-to-person encounter in which one person elicits information from the other’. 8 Information is elicited through careful and purposeful questioning and listening. 9 Research interviews in anaesthesia are generally purposeful conversations with a structure that allows the researcher to gather information about a participant's ideas, perceptions and experiences concerning a given topic.

A structured interview is when the researcher has already decided on a set of questions to ask. 9 If the researcher will ask a set of questions, but has flexibility to follow up responses with further questions, this is called a semi-structured interview. Semi-structured interviews are commonly used in research involving thematic analysis. The researcher can also use other forms of questioning, such as single-question interview. Semi-structured interviews are commonly used in anaesthesia, such as the studies from our own research group. 10 , 11 , 12

Interviews are usually recorded in audio form and then transcribed. For each interview or focus group, a single transcript is created. The transcripts become the written form of data and the collection of transcripts from the research participants becomes the data set.

Designing productive interview questions

The design of interview questions significantly shapes a participant's response. Interview questions should be designed using ‘sensitising concepts’ to encourage participants to share information that will increase a researcher's understanding of the participants' experiences, views, beliefs and behaviours. 13 ‘Sensitising concepts’ describe words in questions that bring the participants' attention to a concept of research interest. Examples of sensitising concepts include speaking up, teamwork and theoretical concepts (such as Kolb's experiential learning cycle or Foucauldian power theory in relation to trainee learning and operating theatre culture). 14 , 15 Specifically, the questions should be framed in such a way as to encourage participants to make sense of their own experience and in their own words. The researcher should try to minimise the influences of their own biases when they design questions. Using open-ended questions will increase the richness of data. Box 2 gives examples of question design.

How to design an interview question.

Alt-text: Box 2

Bias, positionality and reflexivity

Bias is an inclination or prejudice for or against someone or something, whereas positionality is a person's position in society or their stance towards someone or something. For example, Tanisha once had an inexperienced anaesthetist accidentally rupture one of her veins whilst they were siting an i.v. cannula in an emergency situation. Now, Tanisha has a bias against inexperienced anaesthetists. Tanisha's positionality —a medical anthropologist with no anaesthesia training, but working with many anaesthesia colleagues, including her director—may also inform that bias or the way that Tanisha interacts with anaesthetists. Reflexivity is a process whereby people/researchers proactively reflect on their biases and positionality. Biases shape positionality (i.e. the stance of the researcher in relation to the social, historical and political contexts of the study). In practical research terms, biases and positionality inform the way researchers design and undertake research, and the way they interpret data. It is important in qualitative research to both identify biases and positionality, and to take steps to minimise the impact of these on the research.

Some ways to minimise the influence of bias and positionality on findings include:

(i) Raise awareness amongst the research team of bias and positionality.

(ii) Design research/interview questions that minimise potential for these to distort which data are collected or how they are collected.

(iii) Researchers ask reflexive questions during data analysis, such as, ‘Is my bias about xxx informing my view of these data?’

(iv) Two or more researchers are involved in the analysis process.

(v) Data analysis member check (e.g. checking back with participants if the interpretation of their data is consistent with their experience and with what they said).

Before embarking on the study, researchers should consider their own experiences, knowledge and views; how this influences their own position in relation to the study question; and how this position could potentially introduce bias in how they collect and analyse the data. Taking time to reflect on the impact of the researchers' position is an important step towards being reflective and transparent throughout the research process. When writing up the study, researchers should include statements on bias and positionality. In quantitative research, we aim to eliminate bias. In qualitative research, we acknowledge that bias is inevitable (and sometimes even unconscious), and we take steps to make it explicit and to minimise its effect on study design and data interpretation.

Sampling and saturation

Qualitative research typically uses systematic, non-probability sampling. Unlike quantitative research, the goal of sampling is not to randomly select a representative sample from a population. Instead, researchers identify and select individuals or groups relevant to the research question. Commonly used sampling techniques in anaesthesia qualitative research are homogeneous (group) sampling and maximum variation sampling. In the former, researchers may be concerned with the experiences of participants from a distinct group or who share a certain characteristic (e.g. female anaesthesia trainees), so they recruit selectively from within the group with this shared characteristic to gain a rich, in-depth understanding of their experiences. Conversely, the aim with maximum variation sampling is to recruit participants with diverse characteristics to obtain a broad understanding of the question being studied (e.g. members of different professional groups within operating theatre teams, who have diverse ages, gender and ethnicities).

As with quantitative research, the purpose of sampling is to recruit sufficient numbers of participants to enable identification of patterns or richness in what they say or do to understand or explain the phenomenon of interest, and where collecting more data is unlikely to change this understanding.

In qualitative research, data collection and analysis often occur concurrently. This is because data collection is an iterative process both in recruitment and in questioning. The researchers may identify that more data are needed from a particular demographic group or on a particular theme to reach data saturation, so the next participants may be selected from a particular demographic, or be asked slightly different questions or probes to draw out that theme. Sample size is considered adequate when little or no new information emerges from interviews or focus groups; this is generally termed ‘data saturation’, although some qualitative researchers use the term ‘data sufficiency’. This could also be explained in terms of data reliability (i.e. the researcher is satisfied that collecting more data will not substantially change the results). Data saturation typically occurs with between 12 and 17 participants in a relatively homogeneous sampling, but larger numbers may be required, where the interviewees are from distinct groups or cultures. 16 , 17

Data management

For data sets that involve 10 or more transcripts or lengthy interviews (e.g. 90 min or more), researchers often use software to help them collate and manage the data. The most commonly used qualitative software packages are QSR NVivo, Atlas and Dedoose. 18 , 19 , 20 Many researchers use Microsoft Excel instead, or for small data sets the analysis can be done by hand, with pen, paper and scissors (i.e. researchers cut up printed transcripts and reorder the information according to code and theme). 21 NVivo and Atlas are simply repositories, in which you can input the transcripts and, using your coding scheme, sort the text into codes. They facilitate the task of analysis, rather than doing the analysis for you. Some advantages over coding by hand are that text can be allocated to more than one code, and you can easily identify the source of the segment of text you have coded.

Data analysis

Qualitative data analysis is ‘the classification and interpretation of linguistic (or visual) material to make statements about implicit and explicit dimensions and structures of meaning-making in the material and what is represented in it’. 22

Several social scientists have described this analytical process in depth. 2 , 6 , 22 , 23 , 24 , 25 For inductive studies, we recommend researchers follow Braun and Clarke's practical six-phase approach to thematic analysis. 26 The phases are (i) familiarising the researcher with the data, (ii) generating initial codes, (iii) searching for themes, (iv) reviewing themes, (v) defining and naming themes and (vi) producing the report. These six phases are described next.

Phase 1: familiarising the researcher with the data

In this step, the researchers read the transcripts to become familiar with them and take notes on potential recurring ideas or potential themes. They share and discuss their ideas and, in conjunction with any sensitising concepts, they start thinking about possible codes or themes.

Phase 2: generating initial codes

The first step in Phase 2 is ‘assigning some sort of short-hand designation to various aspects of your data so that you can easily retrieve specific pieces of the data’. 2 The designation might be a word or a short phrase that summarises or captures the essence of a particular piece of text. Coding makes it easier to summarise and compare, which is important because qualitative research is primarily about synthesis and comparison of data. 2 , 25 As the researcher reads through the data, they assign codes. If they are coding a transcript, they might highlight some words, for example, and attach to them a single word that summarises their meaning.

Researchers undertaking thematic analysis should iteratively develop a ‘coding scheme’, which is essentially a list of the codes they create as they read the data, and definitions for each code. 25 , 26 Code definitions are important, as they help the researcher make decisions on whether to assign this code or another one to a segment of data. In Table 1 , we have provided an example of text data in Column 1. TJ analysed these data. To do so, she asked, ‘What are these data about? How does it answer the research question? What is the essence of this statement?’ She underlined keywords and created codes and definitions (Columns 2 and 3). Then, TJ searched the remaining data to see if any more data met each code definition, and if so, coded that (see Table 1 ). As demonstrated in Table 1 , data can be coded to multiple codes.

Table 1

How to code qualitative data: an example

In thematic analysis of interview data, we recommend that code definitions begin with something objective, such as ‘participant describes’. This keeps the researcher's focus on what participants said rather than what the researcher thought or said.

There is no set rule for how many codes to create. 25 However, in our experience, effective manageable coding schemes tend to have between 15 and 50 codes. The coding scheme is iterative. This means that the coding scheme is developed over time, with new codes being created as more data are coded. For example, after a close reading of the first transcript, the researcher might create, say, 10 codes that convey the key points. Then, the researcher reads and codes the next transcript and may, for instance, create additional four codes. As additional transcripts are read and coded, more codes may be created. Not all codes are relevant to all transcripts. The researcher will notice patterns as they code more transcripts. Some codes may be too broad and will need to be refined into two or three smaller codes (and vice versa ). Once the coding scheme is deemed complete and all transcripts have been coded, the researcher should go back to the beginning and recode the first few transcripts to ensure coding rigour.

The second step in Phase 2, once the coding is complete, is to collate all the data relevant to each of these codes.

Phase 3: searching for themes

In this phase, the researchers look across the codes to identify connections between them, with the intention of collating the codes into possible themes. Once these possible themes have been identified, all the data relevant to each possible theme are pulled together under that theme.

Phase 4: reviewing the themes

After the initial collation of the data into themes, the researchers undertake a rigorous process of checking the integrity of these themes, through reading and re-reading their data. This process includes checking to see if the themes ‘fit’ in relation to the coded excerpts (i.e. Do all the data collected under that theme fit within that theme?). Next is checking if the themes fit in relation to the whole data set (i.e. Do the themes adequately reflect the data?) This step may result in the search for additional themes. As a final step in this phase, the researchers create a thematic ‘map’ of the analysis.

When viewed together, the themes should answer the research question and should summarise participant experiences, views or behaviours.

Phase 5: naming the themes

Once researchers have checked the themes and included any additional emerging themes they name the final set of themes identified. Each theme and any subthemes should be listed in turn.

Phase 6: producing the report

The report should summarise the themes and illustrate them by choosing vivid or persuasive extracts from the data. For data arising from interviews, extracts will be quotes from participants. In some studies, researchers also report strong associations between themes, or divide a theme into sub-themes.

Tight word limits on many academic journals can make it difficult to include multiple quotes in the text. 27 One way around a word limit is to provide quotes in a table or a supplementary file, although quotes within the text tend to make for more interesting and compelling reading.

Who should analyse the data?

Ideally, each researcher in the team should be involved in the data analysis. Contrasting researcher viewpoints on the same study subject enhance data quality and validity, and minimise research bias. Independent analysis is time and resource intensive. In clinical research, close independent analysis by each member of the research team may be impractical, and one or two members may undertake the analysis while the rest of the research team read sections of data (e.g. reading two or three transcripts rather than closely analysing the whole data set), thus contributing to Phase 1 and Phase 2 of Braun and Clarke's method. 2

The research team should regularly meet to discuss the analytical process, as described earlier, to workshop and reach agreement on the coding and emergent themes (Phase 4 and Phase 5). The research team members compare their perspectives on the data, analyse divergences and coincidences and reach agreement on codes and emerging themes. Contrasting researcher viewpoints on the same study subject enhance data quality and validity, and minimise research bias.

Judging the quality and rigour of published studies involving thematic analysis

There are a number of indicators of quality when reading and appraising studies. 28 , 29 , 30 , 31 In essence, the authors should clearly state their method of analysis (e.g. thematic analysis) and should reference the literature relevant to their qualitative method, for example Braun and Clarke. 2 This is to indicate that they are following established steps in thematic analysis. The authors should include in the methods a description of the research team, their biases and experience and the efforts made to ensure analytical rigour. Verbatim quotes should be included in the findings to provide evidence to support the themes.

A number of guides have been published to assist readers, researchers and reviewers to evaluate the quality of a qualitative study. 30 , 31 The Joanna Briggs Institute guide to critical appraisal of qualitative studies is a good start. 30 This guide includes a set of 10 criteria, which can be used to rate the study. The criteria are summarised in Box 3 . Within these criteria lie rigorous methodological approaches to how data are collected, analysed and interpreted.

Ten quality appraisal criteria for qualitative literature.31

• (i) Alignment between the stated philosophical perspective and the research methodology
• (ii) Alignment between the research methodology and the research question or objectives
• (iii) Alignment between the research methodology and the methods used to collect data
• (iv) Alignment between the research methodology and the representation and analysis of data
• (v) Alignment between the research methodology and the interpretation of results
• (vi) A statement locating the researcher culturally or theoretically (positionality and bias)
• (vii) The influence of the researcher on the research, and vice versa
• (viii) Adequate representation of participants and their voices
• (ix) Ethical research conduct and evidence of ethical approval by an appropriate body
• (x) Conclusions flow from the analysis, or interpretation, of the data

Alt-text: Box 3

Another approach to quality appraisal comes from Lincoln and Guba, who have published widely on the topic of judging qualitative quality. 28 They look for quality in terms of credibility, transferability, dependability, confirmability and authenticity. There are many qualitative checklists readily accessible online, such as the Standards for Reporting Qualitative Research checklist or the Consolidated Criteria for Reporting Qualitative Research checklist, which researchers can include in their work to demonstrate quality in these areas.

Conclusions

As with quantitative research, qualitative research has requirements for rigour and trustworthiness. Thematic analysis is an accessible qualitative method that can offer researchers insight into the shared experiences, views and behaviours of research participants.

Declaration of interests

The authors declare that they have no conflicts of interest.

The associated MCQs (to support CME/CPD activity) will be accessible at www.bjaed.org/cme/home by subscribers to BJA Education .

Biographies

Tanisha Jowsey PhD BA (Hons) MA PhD is a senior lecturer in the Centre for Medical and Health Sciences Education, School of Medicine, University of Auckland. She has a background in medical anthropology and has expertise as a qualitative researcher.

Carolyn Deng MPH FANZCA is a specialist anaesthetist at Auckland City Hospital. She has a Master of Public Health degree. She is embarking on qualitative research in perioperative medicine and hopes to use it as a tool to complement quantitative research findings in the future.

Jennifer Weller MD MClinEd FANZCA FRCA is head of the Centre for Medical and Health Sciences Education at the University of Auckland. Professor Weller is a specialist anaesthetist at Auckland City Hospital and often uses qualitative methods in her research in clinical education, teamwork and patients' safety.

Matrix codes: 1A01, 2A01, 3A01

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Chapter 22: Thematic Analysis

Darshini Ayton

Learning outcomes

Upon completion of this chapter, you should be able to:

• Describe the different approaches to thematic analysis.
• Understand how to conduct the three types of thematic analysis.
• Identify the strengths and limitations of each type of thematic analysis.

What is thematic analysis?

Thematic analysis is a common method used in the analysis of qualitative data to identify, analyse and interpret meaning through a systematic process of generating codes (see Chapter 20) that leads to the development of themes. 1 Thematic analysis requires the active engagement of the researcher with the data, in a process of sorting, categorising and interpretation. 1 Thematic analysis is exploratory analysis whereby codes are not predetermined and are data-derived, usually from primary sources of data (e,g, interviews and focus groups). This is in contrast to themes generated through directed or summative content analysis, which is considered confirmatory hypothesis-driven analysis, with predetermined codes typically generated from a hypothesis (see Chapter 21). 2 There are many forms of thematic analysis. Hence, it is important to treat thematic analysis as one of many methods of analysis, and to justify the approach on the basis of the research question and pragmatic considerations such as resources, time and audience. The three main forms of thematic analysis used in health and social care research, discussed in this chapter, are:

Applied thematic analysis

• Framework analysis
• Reflexive thematic analysis.

This involves multiple, inductive analytic techniques designed to identify and examine themes from textual data in a way that is transparent and credible, drawing from a broad range of theoretical and methodological perspectives. It focuses on presenting the stories of participants as accurately and comprehensively as possible. Applied thematic analysis mixes a bit of everything: grounded theory, positivism, interpretivism and phenomenology. 2

Applied thematic analysis borrows what we feel are the more useful techniques from each theoretical and methodological camp and adapts them to an applied research context. 2(p16)

Applied thematic analysis involves five elements:

• Text s egmentation  involves identifying a meaningful segment of text and the boundaries of the segment. Text segmentation is a useful process as a transcript from a 30-minute interview can be many pages long. Hence, segmenting the text provides a manageable section of the data for interrogation of meaning. For example, text segmentation may be a participant’s response to an interview question, a keyword or concept in context, or a complete discourse between participants. The segment of text is more than a short phrase and can be both small and large sections of text. Text segments can also overlap, and a smaller segment may be embedded within a larger segment. 3
• Creation of the codebook is a critical element of applied thematic analysis. The codebook is created when the segments of text are systematically coded into categories, types and relationships, and the codes are defined by the observed meaning in the text. The codes and their definitions are descriptive in the beginning, and then evolve into explanatory codes as the researcher examines the commonalities, differences and relationships between the codes. The codebook is an iterative document that the researcher builds and refines as they become more immersed and familiar with the data. 3 Table 22.1 outlines the key components of a codebook. 3

Table 22.1. Codebook components and an example

• Structural coding can be useful if a structured interview guide or focus group guide has been used by the researcher and the researcher stays close to the wording of the question and its prompts. The structured question is the structural code in the codebook, and the text segment should include the participant’s response and any dialogue following the question. Of course, this form of coding can be used even if the researcher does not follow a structured guide, which is often the reality of qualitative data collection. The relevant text segments are coded for the specific structure, as appropriate. 3
• Content coding is informed by the research question(s) and the questions informing the analysis. The segmented text is grouped in different ways to explore relationships, hierarchies, descriptions and explanations of events, similarities, differences and consequences. The content of the text segment should be read and re-read to identify patterns and meaning, with the generated codes added to the codebook.
• Themes vary in scope, yet at the core they are phrases or statements that explain the meaning of the text. Researchers need to be aware that themes are considered a higher conceptual level than codes, and therefore should not be comprised of single words or labels. Typically, multiple codes will lead to a theme. Revisiting the research and analysis questions will assist the researcher to identify themes. Through the coding process, the researcher actively searches the data for themes. Examples of how themes may be identified include the repetition of concepts within and across transcripts, the use of metaphors and analogies, key phrases and common phrases used in an unfamiliar way. 3

Framework a nalysis

This method originated in the 1980s in social policy research. Framework analysis is suited to research seeking to answer specific questions about a problem or issue, within a limited time frame and with homogenous data (in topics, concepts and participants); multiple researchers are usually involved in the coding process. 4-6 The process of framework analysis is methodical and suits large data sets, hence is attractive to quantitative researchers and health services researchers. Framework analysis is useful for multidisciplinary teams in which not all members are familiar with qualitative analysis. Framework analysis does not seek to generate theory and is not aligned with any particular epistemological, philosophical or theoretical approach. 5 The output of framework analysis is a matrix with rows (cases), columns (codes) and cells of summarised data that enables researchers to analyse the data case by case and code by code. The case is usually an individual interview, or it can be a defined group or organisation. 5

The process for conducting framework analysis is as follows 5 :

1. Transcription – usually verbatim transcription of the interview.

2. Familiarisation with the interview – reading the transcript and listening to the audio recording (particularly if the researcher doing the analysis did not conduct the interview) can assist in the interpretation of the data. Notes on analytical observations, thoughts and impressions are made in the margins of the transcript during this stage.

3. Coding – completed in a line-by-line method by at least two researchers from different disciplines (or with a patient or public involvement representative), where possible. Coding can be both deductive – (using a theory or specific topics relevant to the project – or inductive, whereby open coding is applied to elements such as behaviours, incidents, values, attitudes, beliefs, emotions and participant reactions. All data is coded.

4. Developing a working analytical framework – codes are collated and organised into categories, to create a structure for summarising or reducing the data.

5. Applying the analytical framework – indexing the remaining transcripts by using the categories and codes of the analytical framework.

6. Charting data into the framework matrix – summarising the data by category and from each transcript into the framework matrix, which is a spreadsheet with numbered cells in which summarised data are entered by codes (columns) and cases (rows). Charting needs to balance the reduction of data to a manageable few lines and retention of the meaning and ‘feel’ of the participant. References to illustrative quotes should be included.

7. Interpreting the data – using the framework matrix and notes taken throughout the analysis process to interpret meaning, in collaboration with team members, including lay and clinical members.

Reflexive thematic analysis

This is the thematic analysis approach developed by Braun and Clarke in 2006 and explained in the highly cited article ‘ Using thematic analysis in psychology ’ . 7 Reflexive thematic analysis recognises the subjectiveness of the analysis process, and that codes and themes are actively generated by the researcher. Hence, themes and codes are influenced by the researcher’s values, skills and experiences. 8 Reflexive thematic analysis ‘exists at the intersection of the researcher, the dataset and the various contexts of interpretation’. 9(line 5-6) In this method, the coding process is less structured and more organic than in applied thematic analysis. Braun and Clarke have been critical of the use of the term ‘emerging themes’, which many researchers use to indicate that the theme was data-driven, as opposed to a deductive approach:

This language suggests that meaning is self evident and somehow ‘within’ the data waiting to be revealed, and that the researcher is a neutral conduit for the revelation of said meaning. In contrast, we conceptualise analysis as a situated and interactive process, reflecting both the data, the positionality of the researcher, and the context of the research itself… it is disingenuous to evoke a process whereby themes simply emerge, instead of being active co-productions on the part of the researcher, the data/participants and context. 10 (p15)

Since 2006, Braun and Clarke have published extensively on reflexive thematic analysis, including a methodological paper comparing reflexive thematic analysis with other approaches to qualitative analysis, 8 and have provided resources on their website to support researchers and students. 9 There are many ways to conduct reflexive thematic analysis, but the six main steps in the method are outlined following. 9 Note that this is not a linear, prescriptive or rule-based process, but rather an approach to guide researchers in systematically and robustly exploring their data.

1.  Familiarisation with data – involves reading and re-reading transcripts so that the researcher is immersed in the data. The researcher makes notes on their initial observations, interpretations and insights for both the individual transcripts and across all the transcripts or data sources.

2.  Coding – the process of applying succinct labels (codes) to the data in a way that captures the meaning and characteristics of the data relevant to the research question. The entire data set is coded in numerous rounds; however, unlike line-by-line coding in grounded theory (Chapter 27), or data segmentation in applied thematic analysis, not all sections of data need to be coded. 8 After a few rounds of coding, the codes are collated and relevant data is extracted.

3.  Generating initial themes – using the collated codes and extracted data, the researcher identifies patterns of meaning (initial or potential themes). The researcher then revisits codes and the data to extract relevant data for the initial themes, to examine the viability of the theme.

4 .  Developing and reviewing themes – checking the initial themes against codes and the entire data set to assess whether it captures the ‘story’ of the data and addresses the research question. During this step, the themes are often reworked by combining, splitting or discarding. For reflexive thematic analysis, a theme is defined as a ‘pattern of shared meaning underpinned by a central concept or idea’. 8 (p 39 )

5.  Refining, defining and naming themes – developing the scope and boundaries of the theme, creating the story of the theme and applying an informative name for the theme.

6.  Writing up – is a key part of the analysis and involves writing the narrative of the themes, embedding the data and providing the contextual basis for the themes in the literature.

Themes versus c odes

As described above, themes are informed by codes, and themes are defined at a conceptually higher level than codes. Themes are broader categorisations that tend to describe or explain the topic or concept. Themes need to extend beyond the code and are typically statements that can stand alone to describe and/or explain the data. Fereday and Muir-Cochrane explain this development from code to theme in Table 22.2. 11

Table 22.2. Corroborating and legitimating coded themes to identify second-order themes

*Note: This table is from an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

When I [the author] first started publishing qualitative research, many of my themes were at the code level. I then got advice that when the themes are the subheadings of the results section of my paper, they should tell the story of the research. The difference in my theme naming can be seen when comparing a paper from my PhD thesis, 12 which explores the challenges of church-based health promotion, with a more recent paper that I published on antimicrobial stewardship 13 (refer to the theme tables in the publications).

Table 22.3. Examples of thematic analysis

Advantages and challenges of thematic analysis.

Thematic analysis is flexible and can be used to analyse small and large data sets with homogenous and heterogenous samples. Thematic analysis can be applied to any type of data source, from interviews and focus groups to diary entries and online discussion forums. 1 Applied thematic analysis and framework analysis are accessible approaches for non-qualitative researchers or beginner researchers. However, the flexibility and accessibility of thematic analysis can lead to limitations and challenges when thematic analysis is misapplied or done poorly. Thematic analysis can be more descriptive than interpretive if not properly anchored in a theoretical framework. 1 For framework analysis, the spreadsheet matrix output can lead to quantitative researchers inappropriately quantifying the qualitative data. Therefore, training and support from a qualitative researcher with the appropriate expertise can help to ensure that the interpretation of the data is meaningful. 5

Thematic analysis is a family of analysis techniques that are flexible and inductive and involve the generation of codes and themes. There are three main types of thematic analysis: applied thematic analysis, framework analysis and reflexive thematic analysis. These approaches span from structured coding to organic and unstructured coding for theme development. The choice of approach should be guided by the research question, the research design and the available resources and skills of the researcher and team.

• Clarke V, Braun V. Thematic analysis. J Posit Psychol . 2017;12(3):297-298. doi:10.1080/17439760.2016.1262613
• Guest G, MacQueen KM, Namey EE. Introduction to applied thematic analysis. In: Guest G, MacQueen, K.M., Namey, E.E., ed. Applied thematic analysis . SAGE Publications, Inc.; 2014. Accessed September 18, 2023. https://methods.sagepub.com/book/applied-thematic-analysis
• Guest G, MacQueen, K.M., Namey, E.E.,. Themes and Codes. In: Guest G, MacQueen, K.M., Namey, E.E., ed. Applied thematic analysis . SAGE Publications, Inc.; 2014. Accessed September 18, 2023. https://methods.sagepub.com/book/applied-thematic-analysis
• Srivastava A, Thomson SB. Framework analysis: A qualitative methodology for applied policy research. Journal of Administration and Governance . 2009;72(3). Accessed September 14, 2023. https://ssrn.com/abstract=2760705
• 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. doi:10.1186/1471-2288-13-117
• Smith J, Firth J. Qualitative data analysis: the framework approach. Nurse Res . 2011;18(2):52-62. doi:10.7748/nr2011.01.18.2.52.c8284
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol . 2006;3(2):77-101. doi:10.1191/1478088706qp063oa
• Braun V, Clarke V. Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Couns Psychother Res . 2021;21(1):37-47. doi:10.1002/capr.12360
• Braun V, Clarke V. Thematic analysis. University of Auckland. Accessed September 18, 2023. https://www.thematicanalysis.net/
• Braun V, Clarke V. Answers to frequently asked questions about thematic analysis. University of Auckland. Accessed September 18, 2023. https://www.thematicanalysis.net/faqs/
• Fereday J, Muir-Cochrane E. Demonstrating Rigour Using Thematic Analysis: A Hybrid Approach of Inductive and Deductive Coding and Theme Development. International Journal of Qualitative Methods . 2006;5(1):80-92. doi: 10.1177/160940690600500107
• Ayton D, Manderson L, Smith BJ. Barriers and challenges affecting the contemporary church’s engagement in health promotion. Health Promot J Austr . 2017;28(1):52-58. doi:10.1071/HE15037
• Ayton D, Watson E, Betts JM, et al. Implementation of an antimicrobial stewardship program in the Australian private hospital system: qualitative study of attitudes to antimicrobial resistance and antimicrobial stewardship. BMC Health Serv Res . 2022;22(1):1554. doi:10.1186/s12913-022-08938-8
• McKenna-Plumley PE, Graham-Wisener L, Berry E, Groarke JM. Connection, constraint, and coping: A qualitative study of experiences of loneliness during the COVID-19 lockdown in the UK. PLoS One . 2021;16(10):e0258344. doi:10.1371/journal.pone.0258344
• Dickinson BL, Gibson K, VanDerKolk K, et al. “It is this very knowledge that makes us doctors”: an applied thematic analysis of how medical students perceive the relevance of biomedical science knowledge to clinical medicine. BMC Med Educ . 2020;20(1):356. doi:10.1186/s12909-020-02251-w
• Bunzli S, O’Brien P, Ayton D, et al. Misconceptions and the acceptance of evidence-based nonsurgical interventions for knee osteoarthritis. A Qualitative Study. Clin Orthop Relat Res . 2019;477(9):1975-1983. doi:10.1097/CORR.0000000000000784

Qualitative Research – a practical guide for health and social care researchers and practitioners Copyright © 2023 by Darshini Ayton is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License , except where otherwise noted.

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Research Writing and Analysis

• NVivo Group and Study Sessions
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• Using Qualtrics
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• Research Process Flow Chart
• Research Alignment Chapter 1 This link opens in a new window
• Step 1: Seek Out Evidence
• Step 2: Explain
• Step 3: The Big Picture
• Step 4: Own It
• Step 5: Illustrate
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• Systematic Reviews & Meta-Analyses
• How to Synthesize and Analyze
• Synthesis and Analysis Practice
• Synthesis and Analysis Group Sessions
• Problem Statement
• Purpose Statement
• Quantitative Research Questions
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• Trustworthiness of Qualitative Data
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• Thematic Data Analysis in Qualitative Design
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Thematic Analysis

Data analysis in design and development research.

Most of the data in DDR will be qualitative in nature and best analyzed using a thematic approach such as Clarke and Braun’s 6-step process illustrated below:

Clarke and Braun’s (2013) Six Step Data Analysis Process

The 6-phase coding framework for thematic analysis will be used to identify themes and patterns in the data (Braun & Clarke, 2006). The phases are:

• Familiarization of data.
• Generation of codes.
• Combining codes into themes.
• Reviewing themes.
• Determine significance of themes.
• Reporting of findings.

For survey and other numeric data, descriptive statistics can be generated using EXCEL or SPSS.

Clarke, V. & Braun, V. (2013) Teaching thematic analysis: Overcoming challenges and developing strategies for effective learning. The Psychologist , 26(2), 120-123

Reading List

Merriam and Tysdale (2016) is considered a seminal source for qualitative methodology. Generic design is discussed on pages 23 to 25.

Merriam, S. & Tysdale, E. (2016). Qualitative research: A guide to design and implementation(4th ed). Jossey-Bass.

Elliott and Timulak (2021) provide a current summary of descriptive design.

Elliott, R. & Timulak, L. (2021). Descriptive-interpretive qualitative research; A generic approach. American Psychological Association. https://soi.org/10.1037/0000224-000  

Kalke (2014) provides overview of generic design including the criticisms. The update, in 2018, reaffirms the 2014 source.

Kalke, R. (2014). Generic qualitative approaches: Pitfalls and benefits of methodological mixology. International Journal of Qualitative Methods, 13 , 37-52. Retrieved from https://journals.sagepub.com/doi/full/10.1177/160940691401300119

Kalke, R., (2018). Reflection/commentary on a past article” Generic qualitative approaches; Pitfalls and benefits of methodological mixology. International Journal of Qualitative Methods . https://journals.sagepub.com/doi/full/10.1177/1609406918788193  

Descriptive Design has been described in the qualitative research literature since the early 2000’s. Prior to that, it was not considered a non-categorial design lacking in rigor. The following articles address those criticisms and provide insight into how to best design a study using a descriptive approach.

Caelli, K., Ray, L., & Mill, J. (2003). Clear as mud: Towards a greater clarity in generic qualitative research. International Journal of Qualitative Methods, 2( 2), 1 – 23. https://journals.sagepub.com/doi/pdf/10.1177/160940690300200201

Percy, W., Kostere, K., & Kostere, S. (2015). Generic qualitative research in psychology. The Qualitative Report, 20 (2), 76-85. https://nsuworks.nova.edu/tqr/vol20/iss2/7/

Sandelowski, M. (2000). Focus on research methods-Whatever happened to qualitative description? Research in Nursing and Health, 23 (4), 334-340. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.461.4974&rep=rep1&type=pdf

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Digital Humanities Looking at the World pp 53–71 Cite as

Enhancing Semantic Understanding by Bridging Topic Modeling and Thematic Analysis: An Empirical Study on Self-Help Twitter Corpus and In-Depth Interviews

• Canan Urhan 4  
• First Online: 20 April 2024

Bridging data science with social science is useful for social scientists to develop a more transparent approach to their data analysis and enhance the rigor and credibility of qualitative research. This study aims to offer the potential of an iterative process which allows to discover some patterns through exploratory analysis of big Twitter data drawn from four influential self-help gurus’ accounts and grounding these patterns into smaller but richer interview data based on 24 in-depth interviews conducted among self-help consumers. Going in between the findings from topic modeling and thematic analysis helped triangulate the analysis of the same research question from multiple data sources and from different methodological perspectives.

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https://github.com/JustAnotherArchivist/snscrape .

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Urhan, C. (2024). Enhancing Semantic Understanding by Bridging Topic Modeling and Thematic Analysis: An Empirical Study on Self-Help Twitter Corpus and In-Depth Interviews. In: Araújo, S., Aguiar, M., Ermakova, L. (eds) Digital Humanities Looking at the World . Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-031-48941-9_5

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Attempting rigour and replicability in thematic analysis of qualitative research data; a case study of codebook development

• Kate Roberts 1 ,
• Anthony Dowell 2 &
• Jing-Bao Nie 3  

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Navigating the world of qualitative thematic analysis can be challenging. This is compounded by the fact that detailed descriptions of methods are often omitted from qualitative discussions. While qualitative research methodologies are now mature, there often remains a lack of fine detail in their description both at submitted peer reviewed article level and in textbooks. As one of research’s aims is to determine the relationship between knowledge and practice through the demonstration of rigour, more detailed descriptions of methods could prove useful. Rigour in quantitative research is often determined through detailed explanation allowing replication, but the ability to replicate is often not considered appropriate in qualitative research. However, a well described qualitative methodology could demonstrate and ensure the same effect.

This article details the codebook development which contributed to thematic analysis of qualitative data. This analysis formed part of a mixed methods multiphase design research project, with both qualitative and quantitative inquiry and involving the convergence of data and analyses. This design consisted of three distinct phases: quantitative, qualitative and implementation phases.

Results and conclusions

This article is aimed at researchers and doctoral students new to thematic analysis by describing a framework to assist their processes. The detailed description of the methods used supports attempts to utilise the thematic analysis process and to determine rigour to support the establishment of credibility. This process will assist practitioners to be confident that the knowledge and claims contained within research are transferable to their practice. The approach described within this article builds on, and enhances, current accepted models.

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Navigating the world of thematic qualitative analysis can be challenging. Thematic analysis is a straightforward way of conducting hermeneutic content analysis which is from a group of analyses that are designed for non-numerical data. It is a form of pattern recognition used in content analysis whereby themes (or codes) that emerge from the data become the categories for analysis. These forms of analysis state that the material as a whole is understood by studying the parts, but the parts cannot be understood except in relation to the whole [ 1 ]. The process involves the identification of themes with relevance specific to the research focus, the research question, the research context and the theoretical framework. This approach allows data to be both described and interpreted for meaning.

In qualitative research replication of thematic analysis methods can be challenging given that many articles omit a detailed overview of qualitative process; this makes it difficult for a novice researcher to effectively mirror analysis strategies and processes and for experienced researchers to fully understand the rigour of the study. Even though descriptions of code book development exists in the literature [ 2 , 3 ] there continues to be significant debate about what constitutes reliability and rigor in relation to qualitative coding [ 1 ]. In fact, the idea of demonstration of rigour and reliability is often overlooked or only briefly discussed creating difficulties for replication.

Research aims to determine the relationship between knowledge and practice through the demonstration of rigour, validity and reliability. This combination helps determine the trustworthiness of a project. This is often determined through detailed explanations of methods allowing replication and thus the application of findings, but the ability to replicate is often not considered appropriate in qualitative research. However, general consensus states that all research should be open to critique, which includes the integrity of the assumptions and conclusions reached [ 4 ]. That considered, a well described qualitative methodology utilising some components of quantitative frameworks could potentially have the same effect.

When research is aimed at informing clinical practice, determining trustworthiness is as an important step to ensure applicability and utility [ 5 ]. It is suggested that validity, one component of trustworthiness in qualitative research, can be established by investigating three main aspects: content (sampling frame and instrument development description); criterion-related (comparison and testing of the instrument and analysis tools between researchers, e.g. inter-rater or inter-coder testing); and, construct validity (appropriateness of data-led inferences to the research question using reflexive techniques) [ 4 ]. It would thus seem then that determining the validity, or ‘trustworthiness’, can be best achieved by a detailed and reflexive account of procedures and methods, allowing the readers to see how the lines of inquiry have led to particular conclusions [ 6 ].

Whilst the development of a codebook is not considered a time efficient mode for analysis [ 2 ], it enables a discussion and possibility of replication within qualitative methods utilising what could be considered a quantitative tool. It also allows reliability testing to be more easily applied. The codebook development discussed in this article formed part of a mixed methods multiphase design research project (mentioned throughout as the “case study”) with the overarching aims of identifying barriers and enhancing facilitators to communication between two health provider groups. The discussion of demonstration of codebook development will include examples from the PhD research project, and whilst a full discussion of the project is not within the scope of this article some background will assist in a grounding of the discussion.

This research project was a mixed methods multiphase design project, with both qualitative and quantitative inquiry and involving the convergence of data and analyses. This design consisted of three distinct phases: quantitative, qualitative and implementation phases. This project’s qualitative thematic analysis utilised the dualistic technique of inductive and deductive thematic analysis informed by the work of Fereday and Muir-Cochrane which included the development and description of an analytical codebook [ 7 ]. (See Fig.  1 for the process followed in the coding process) The deductive component involved the creation of a preliminary codebook to help guide the analysis. This was based on the research question being asked, the initial analysis of the literature, the quantitative survey undertaken as part of the project and a preliminary scan of the raw interview data [ 8 ]. Additionally, the inductive approach followed the creation of the codebook. This allowed for any unexpected themes to develop during the coding process [ 9 ]. Deductive approaches are based on the assumption that there are ‘laws’ or principles that can be applied to the phenomenon. Insight was thus derived from the application of the deductive model to the set of information and searching for consistencies and anomalies. Conversely, inductive approaches searched for patterns from the ‘facts’ or raw data [ 9 ]. This allowed for any unexpected themes with the potential to provide further useful analysis of the data to develop during the coding process. Combining these approaches allowed the development of patterns from the unknown parts that may fall outside the predictive codes of deductive reasoning and allowed for a more complete analysis.

- Process of code creation and testing

This combined inductive/deductive approach fits well with both a mixed methods style of methodology and a pragmatic epistemology underpinning, whereby the methods are chosen by the researcher to be best able to answer the research questions. A critical realism ontological approach also meant that while the deductive approach provided an initial sound grounding, the creator of the codebook needed to include an inductive process to allow the reality of others to be clearly represented in the data analysis.

The goal of this article therefore is to highlight the difficulties of the demonstration of rigour in qualitative thematic analysis. It does this by investigating the assumption which states that replicability is not seen as necessary in qualitative research. It then continues this conversation by showing the process of a codebook development and its use as a means of analysing interview data, using a case study and real world data. It also aims to clearly discuss the approach to determining rigour and validly within thematic analysis as part of a research project. The description of analysis is embedded within the philosophical standpoint of critical realism and pragmatism, which adds depth to the utilisation of these methods in previous discussions [ 2 , 7 ]. The clear description of the coding and reliability testing used in this analysis will assist replication and will support researchers and doctoral students hoping to demonstrate rigour in similar studies.

This case study was a project investigating the development of effective communication and collaboration tools between acupuncturists and general practitioners (GPs). A GP (sometimes known as a family doctor or family practice physician) is a medical physician whose practice is not orientated to a specific medical speciality but covers a variety of medical problems in patients of all ages [ 10 ]. The rationale for this project was the fact that the landscape for patient treatment is changing, and rather than rely solely on their GP’s advice, patients are making their own decisions about choice of treatment. Increasing numbers of patients are using complementary and alternative medicine (CAM) either as an adjunct, or as an alternative to standard mainstream care [ 11 ].

There are multiple reasons for the increase in CAM use cited in the literature including dissatisfaction with the biomedical model, increased perceived efficacy of CAM and an increase in training and practice of CAM therapies including biomedical appropriation of CAM skills [ 12 ]. Increasingly patients believe a combined approach of CAM and conventional medicine is better than either on its own, and more and more patients have the desire to discuss CAM with well-informed GPs [ 13 ].

Patient’s extensive use of CAM has the potential to impact doctor-patient communication. Even with the increase in CAM use and a desire to discuss this, up to 77% of patients do not disclose their CAM use to their general practitioners, and GPs tend to underestimate patients use of CAM and may not ask about it [ 14 ]. When CAM is discussed, GPs are being asked about the safety and effectiveness of CAM either on its own or as an adjunct, and additionally many patients have an expectation that their GP will be able to discuss and/or refer to a CAM practitioner [ 15 ].

Communication gaps identified in both the research and evidenced in clinical practice formed the basis of this research questions. The specific questions asked were:

What is the current communication and collaboration between general practitioners and acupuncturists or CAM?

What are the barriers to communication between General Practice and Acupuncture or CAM?

How can communication be improved between General Practice and Acupuncture or CAM?

Does communication and collaboration differ in the landscape of mental health? And if so, why?

The mixed methods project utilised both survey and interview techniques to extrapolate data from the two participant groups (acupuncturists and general practitioners). The research aimed to evaluate and define current practice in order to develop effective strategies to connect the two groups. The tools and strategies allow clinical utility and transferability to other similar clinical groups. Ethics approval for this study was obtained from the The University of Otago Ethics Committee, and additionally the Ngai Tahu Research Consultation Committee approved the research and considered it of importance to Maori health.

The case study example within this article was part of a mixed method project which contained a qualitative approach to interpreting interview data using thematic analysis. It is the analysis of the qualitative component of this study that forms the basis of the discussion contained herewith. These types of qualitative analyses posit that reality consists of people’s subjective experiences or interpretations of the world. Therefore, there is no singular correct pathway to knowledge. This mode of analysis suggests a way to understand meaning or try to make sense out of textual data which may be somewhat unclear. Knowledge is derived from the field through a semi-structured examination of the phenomenon being explored. Thus there is no objective knowledge which is independent of thinking [ 16 ].

The case example utilised a codebook as part of the thematic analysis. A codebook is a tool to assist analysis of large qualitative data sets. It defines codes and themes by giving detailed descriptions and restrictions on what can be included within a code, and provides concrete examples of each code. A code is often a word or short phrase that symbolically assigns a summative, salient, essence-capturing, or attribute for a portion of data [ 17 ]. The use of a codebook was deemed appropriate to allow for the testing of interpretations of the data, and to allow for demonstration of rigour within the project.

Study population

The study population consisted of GPs in current practice registered with the Royal New Zealand College of General Practitioners, and Acupuncturists in current practice registered with either the New Zealand Register of Acupuncturists or the New Zealand Acupuncture Standards Authority. Written informed consent was obtained from all participants.

Sample size

The recommendation for sampling size when investigating the phenomena surrounding experience is six participants [ 18 ]. However Guest suggests that thematic saturation is more likely to occur with a sample of twelve [ 19 ]. Therefore a group of 27 (14 GPs and 13 acupuncturists) were invited to participate in the semi structured interviews.

Maximum variation purposeful sampling was used for participant recruitment to allow for the exploration of the common and unique manifestations of the target phenomenon and demographically varied cases [ 20 ]. Demographic norms were mirrored where possible in the sampling technique with regard to sex, age, ethnicity and type and location of practice. This type of sampling is non-random and is based on the researcher’s viewpoint that the participants selected will provide insightful and penetrating information regarding the research question. Participants initially self-selected by indicating a willingness to be interviewed during the survey phase of this project, and further participants were targeted to meet demographic subsets.

Rationale of choice of methods

Semi-structured interviews, utilised in this case study, draw on aspects of descriptive research which allow a comprehensive summary of events in everyday terms, and allow for in-depth exploration of a specific phenomenon. The aim is to understand phenomena through meanings that people assign to them [ 21 ]. Through the ability to investigate this descriptive data, new perspectives, concepts and themes may be uncovered. During analysis researchers stay close to the data and there is no ability to prove causal effects. Although the inquiry may be value-bound, the researcher aims through the adoption of their ontological and epistemological lens to identify a range of beliefs without introducing bias from their own world view.

These descriptive techniques explored the range of attitudes, perceptions, beliefs and behaviours from the sample and ensured subsequent discussions and proposed interventions were applicable and appropriate to both GPs and acupuncturists. The qualitative data obtained from the semi structured interviews refined and explained the numerical and statistical results from earlier components of the study through a more in-depth exploration.

Developing the codebook and stages of data coding and testing

The development, use and testing of codebooks is not often reported in qualitative research reports, and rarely in enough detail for replication of the process. The decision to use and test a codebook was important in the demonstration of rigour in this project, as it allowed a clear trail of evidence for the validity of the study and also allowed ease of inter-rater reliability testing of the data. The combination of the inductive/deductive approach described earlier to codebook development meant that the codebook, in this instance, was deduced a priori from the initial search of the literature, the quantitative survey and the initial read of the raw interview data. The preliminary codebook underwent many iterations through the inductive process before the final version was agreed upon by the researchers. (The process of the codebook development is represented in Fig. 1 ). The utilisation of a codebook allowed a more refined, focused and efficient analysis of the raw data in subsequent reads [ 8 ]. The testing of reliability of codes was complex in the context of qualitative research as it could be seen as borrowing a concept from quantitative research and applying it to qualitative research. Yet when adopting the critical realist lens, it is acknowledged that interpretation would be difficult to infer to a wider group without establishing some line of reliability between testers. As this project was aimed directly at practical utility of its findings, the testing approach seemed appropriate.

Summarising the data and identifying initial themes

Following the literature review and suggestion of themes for inclusion in the early codebook a priori, the first read of a sample of the raw data was undertaken. The first read of the data involved highlighting text or ‘codable’ units that the researcher considered may become a ‘codable’ moment. Comments were inserted into the margins with initial thoughts and ideas.

This was then done again using the literature informed codes as a guide to determine whether more codable units fitted within the early codebook, or whether further codes needed to be added to the analytical framework.

Examples of each theme, subtheme and code continued to be reviewed and moved until agreement between the coders as to what determined sufficient demonstration of a true representation of a theme became evident. This involved reading and re reading the subset of transcripts multiple times until theme saturation was achieved. Reoccurring themes were identified, but not necessarily given credence over stand out single comments that really embodied a theme.

Codes were written following the guidelines of Boyatzis [ 9 ] and were classified with the following: label, definition, description, qualifications or exclusions and examples from the raw data. An example of code labels from this research is outlined in Table  1 below.

Applying a template of codes and additional coding

Once the codebook was in a draft form it was applied to a larger data set. This was repeated in an iterative way using the early codebook as a guide to determine whether most codable units fitted within the code guide or whether further codes needed to be added to the analytical framework. Once this was done multiple times with no new codes emerging the codebook was assumed as a valid representation of the data.

Utilising technology: connecting the codes and identifying themes

At this stage the raw data was then transferred into Nvivo software program [ 22 ] to allow for a systematic coding approach with the identified codes being added as nodes, and the coded text being matched to the nodes in a systematic way. This allowed for sorting, clustering and comparison of codes between and within subgroups.

Corroborating and legitimating coded themes

Approaches used for codebook structure analysis were chunking and displaying [ 8 ]. Chunking refers to examining chunks of text that are interrelated and are used for analysis in relation to the research questions and hypotheses. Displaying data is another technique for discovering connections using maps and matrices to contextualise relationships between categories and concepts. Both these approaches allowed for legitimising analysis and to assist in the process of interpretation.

Testing the reliability of the code

Although inter-rater code testing and discussion occurred throughout the codebook development stage, the final codebook continued to be tested for inter-rater reliability before the data reached the interpretation stage. Reliability can be described as the consistency of judgement that protects against or lessens the contamination of projection [ 9 ]. Reliability was tested in this project in two ways:

Consistency of judgment over absence and presence (test-retest reliability); and

Consistency of judgement across various viewers (inter-rater reliability).

Both tests were checked for reliability using this formula suggested by Miles and Huberman [ 23 ]:

This calculation is a much cruder tool than Choen’s kappa, but gives a simple measure of agreement as a percentage value and is able to be applied to small data sets with a high number of variables. As a rule of thumb, the minimum percentage to demonstrate adequate levels of agreement is 75% [ 17 ]. Less than this indicates an inadequate level of agreement.

Inter-rater reliability was tested initially using nominal comparisons of absence or presence of a set of themes and frequency of observation of a single theme (see Table  2 ). This detailed approach to testing of agreement between coders is not always carried out and/or reported whereas it is suggested here as a necessary step. This continued to be tested, with disagreements being recorded, but minimal changes to the codebook were made at this stage unless it was deemed absolutely necessary as the codebook was now deemed to be in its final version. This was in keeping with the critical realism philosophy that states that various realities are possible, and the pragmatic approach which states that there is no one correct way to code a data set. When all coders were in agreement, these sections of data were determined to be key representations of the code. Where more than one, but not a unanimous agreement was made, this section of data would be discussed between coders. When only one coder applied a section of data to a specific code, this was assumed not to be a clear representation of the code.

Examples of how reliability testing was undertaken can be found in Tables  2 and 3 . Once inter-rater testing had been analysed the coding of the data set was seen as complete and key themes and codes were identified and formed the basis for the discussion in relation to the research questions posed. While absolute agreement was not reached, discussion of coding differences continued to inform the codebook development until all coders agreed that the results were reflective of the data. Of interest here, is that even with this detailed and reflexive process undertaken, the final inter-rater calculations still fell below adequate rates of agreement. However, this clear transparency of the process informed the interpretations and from this, conclusions and recommendations were drawn in relation to the research.

Limitations of this method

A key limitation of codebook development is the extensive time required to establish the codebook itself and to train coders in the use of the codebook. Utilisation of a codebook often requires many revisions and iterations during the code development process before coder agreement can be reached. Even then, and as demonstrated by this project, full inter-coder reliability is unlikely to be achieved. Additionally, application of statistical testing, such as kappa coefficients, would require large volumes of data and analysis is unlikely to be undertaken within most qualitative projects. As was the case with this project, as the code number increases the percentage of agreement decreases during calculation. It is therefore unclear whether this form of analysis would reach a different end point to that of other forms of content analysis. To effectively establish this, a comparison of analysis of the same data using different techniques is recommended for future research projects. However, clear guidelines of qualitative methodological processes will strengthen interpretability and applicability of results.

There are also considerable limitations to the utilisation of the percentage agreement calculation of coders. Frequently one category or code is clearer than others. Thus there is likely to be considerable agreement between the two coders about data in this category. Another problem is that the procedure does not take into account that they are expected to agree solely by chance. A correction for this problem is to use a Kappa statistic to measure the agreement between coders. However, as previously mentioned, the more variables and the larger the data set the more problematic this calculation becomes.

Projection is another limitation of this thematic analysis approach. The stronger a researcher’s ideology the more tempted they will be to project. Projection can be reduced through the development of an explicit code and enabling consistency of judgement through inter-rater reliability. It is also necessary to remain close to the raw information during the development of themes and codes [ 9 ]. However, due to the likelihood of different ideologies of coders, it is likely that this will have an impact of the ability to achieve adequate reliability.

Another limitation in thematic analysis can be sampling and the limited scope provided through the use of convenience sampling. In this study the random sample accessed for the quantitative survey did not yield enough voluntary participants for the in-depth interviews hence the sampling framework was modified to purposive convenience sampling. Demographic data was collected to allow for comparison to the larger sample of survey participants and also to the census and workforce survey data carried out nationwide [ 24 , 25 ]. These demographic comparisons need to be explicitly transparent. In this type of study, the sampling will need to always be a convenience sample. This is because a true random sample is unlikely to be feasible as it is necessary for the interviewee to be willing to participate and this usually involves an interest in the subject or in research itself. This may give a somewhat skewed view within the results which must be taken into account in the analysis.

Conclusions

This article has provided a detailed and honest account of the difficulties in demonstrating rigour in thematic analysis of qualitative data. However, the researchers involved in this project found the development and utilisation of a codebook, and the application by a team of researchers of the codebook to the data to be advantageous albeit time consuming. It was thought that the codebook improved the potential for inter-coder agreement and reliability testing and ensured an accurate description of analyses. The approach was consistent with the ontological and epistemological framework which informed the study and allowed the unique perspectives highlighted whilst maintaining integrity of analysis. Whilst the creation of the codebook was time intensive, there is the assurance of a demonstration of rigour and reliability within the process. This article has outlined the steps involved in the process of thematic analysis used in this project and helps to describe the rigour demonstrated within the qualitative component of this mixed methods study. This article does not attempt to present an analysis of the data in relation to the research question, but rather provides a clear description of the process undertaken in a qualitative data analysis framework. This article explains and explores the use of Fereday and Muir-Cochranes’ hybrid approach to analysis which combines deductive and inductive coding whilst embedding it in a differing philosophical standpoint [ 7 ]. The clear description of the coding and reliability testing processes used in this analysis can be replicated and will support researchers wishing to demonstrate rigour in similar studies. We recommend that others embarking on qualitative analysis as a team embrace and enhance the concept of codebook development to guide complex analytical processes.

Abbreviations

Complementary and alternative medicine

General practitioner

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Acknowledgements

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no funding received as part of this study.

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

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Department of Primary Health Care & General Practice, University of Otago, Wellington, New Zealand

Kate Roberts

Anthony Dowell

Bioethics Centre, University of Otago, Dunedin, New Zealand

Jing-Bao Nie

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Conception or design of the work KR, TD, JN. Data collection KR. Data analysis and interpretation KR Drafting the article KR. Critical revision of the article KR, TD, JN. Final approval of the version to be published KR, TD, JN.

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Correspondence to Kate Roberts .

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Roberts, K., Dowell, A. & Nie, JB. Attempting rigour and replicability in thematic analysis of qualitative research data; a case study of codebook development. BMC Med Res Methodol 19 , 66 (2019). https://doi.org/10.1186/s12874-019-0707-y

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Published on 16.4.2024 in Vol 26 (2024)

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Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study

Authors of this article:

Original Paper

• Charlotte Howdle 1   ; 
• William James Alexander Wright 1 , BChir, MB, MA   ; 
• Jonathan Mant 2 , MBBS, MA, MSc, MD   ; 
• Anna De Simoni 2, 3 , MBBS, PhD, MRCGP  

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

2 Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom

3 Wolfson Institute of Population Health, Queen Mary University of London, London, United Kingdom

Corresponding Author:

Anna De Simoni, MBBS, PhD, MRCGP

Wolfson Institute of Population Health

Queen Mary University of London

58 Turner Street

Centre for Primary Care

London, E1 2AB

United Kingdom

Phone: 44 207882 ext 252

Email: [email protected]

Background: The incidence of stroke in children is low, and pediatric stroke rehabilitation services are less developed than adult ones. Survivors of pediatric stroke have a long poststroke life expectancy and therefore have the potential to experience impairments from their stroke for many years. However, there are relatively few studies characterizing these impairments and what factors facilitate or counteract recovery.

Objective: This study aims to characterize the main barriers to and facilitators of recovery from pediatric stroke. A secondary aim was to explore whether these factors last into adulthood, whether they change, or if new factors impacting recovery emerge in adulthood.

Methods: We performed a qualitative thematic analysis based on posts from a population of participants from a UK-based online stroke community, active between 2004 and 2011. The analysis focused on users who talked about their experiences with pediatric stroke, as identified by a previous study. The posts were read by 3 authors, and factors influencing recovery from pediatric stroke were mapped into 4 areas: medical, physical, emotional, and social. Factors influencing recovery were divided into short-term and long-term factors.

Results: There were 425 posts relating to 52 survivors of pediatric stroke. Some survivors of stroke posted for themselves, while others were talked about by a third party (mostly parents; 31/35, 89% mothers). In total, 79% (41/52) of survivors of stroke were aged ≤18 years and 21% (11/52) were aged >18 years at the time of posting. Medical factors included comorbidities as a barrier to recovery. Medical interventions, such as speech and language therapy and physiotherapy, were also deemed useful. Exercise, particularly swimming, was deemed a facilitator. Among physical factors, fatigue and chronic pain could persist decades after a stroke, with both reported as a barrier to feeling fully recovered. Tiredness could worsen existing stroke-related impairments. Other long-standing impairments were memory loss, confusion, and dizziness. Among emotional factors, fear and uncertainty were short-term barriers, while positivity was a major facilitator in both short- and long-term recovery. Anxiety, grief, and behavioral problems hindered recovery. The social barriers were loneliness, exclusion, and hidden disabilities not being acknowledged by third parties. A good support network and third-party support facilitated recovery. Educational services were important in reintegrating survivors into society. Participants reported that worrying about losing financial support, such as disability allowances, and difficulties in obtaining travel insurance and driving licenses impacted recovery.

Conclusions: The lived experience of survivors of pediatric stroke includes long-term hidden disabilities and barriers to rehabilitation. These are present in different settings, such as health care, schools, workplaces, and driving centers. Greater awareness of these issues by relevant professional groups may help ameliorate them.

Introduction

A pediatric stroke is classified as either perinatal (occurring when the child is 20 weeks in gestation to 28 days after birth) or childhood (from 29 days after birth to 18 years). There are >400 cases of pediatric stroke in the United Kingdom annually [ 1 ]. Pediatric stroke can be a debilitating disease, leaving survivors and their families coping with persisting issues during their recovery. These problems evolve and become more numerous as the survivor grows up, with as many as 75% of families of a child with stroke having at least 1 unmet need [ 2 ].

There is limited literature on factors that impact recovery. Survivors of pediatric stroke often develop comorbidities. Studies have found that survivors have an increased incidence of the following: epilepsy [ 3 - 5 ], attention-deficit/hyperactivity disorder [ 3 , 5 ], depression [ 5 ], anxiety [ 4 , 5 ], and autism [ 6 , 7 ], compared with their nonstroke counterparts. Fatigue [ 8 ] and behavioral problems [ 4 , 9 ] also hinder recovery. Mental health support [ 10 ] and follow-up neuropsychological assessments [ 10 , 11 ] positively influence outcomes. Qualitative studies with parents revealed that many disabilities experienced by stroke survivors are hidden [ 9 ], resulting in them not receiving the support they need. 

There are also emotional barriers that impact recovery. Pediatric stroke negatively affects the family of a survivor, with reports of poor parental mental health [ 4 , 11 ], guilt [ 4 , 12 , 13 ], and uncertainty about the future [ 12 ]. Having good parental welfare is important—parents are the primary caregivers following their child’s stroke, and their well-being impacts their child’s recovery. Good family functioning [ 4 ] also facilitates recovery from childhood stroke. Parents reported that treating the child as “normal” aided recovery [ 14 ]. A supportive social network, from close family and friends [ 14 ] to the wider society [ 13 ], is important for both parents and children to facilitate recovery.

Certain social factors are known to impact recovery. Qualitative reviews asking about patients’ experiences of health care showed that after discharge, parents felt abandoned by professionals [ 9 , 12 ]. Health care services may not be flexible, they may be difficult to access, and parents may not know where they can access therapy for their child [ 12 ]. When health care staff could be approached, parents may not have known what questions to ask [ 15 ]. Clear communication with parents by medical professionals about the causes of the stroke and events occurring around the stroke has been identified as an important issue [ 4 ]. Patients have appreciated positivity from clinicians [ 14 ], close and ongoing medical support [ 14 , 15 ], involvement with goal-setting approaches [ 16 , 17 ], and continuity of care. There is limited medical awareness or literature to support parents during their child’s recovery from stroke [ 2 , 9 , 12 ]. Support from charities and both in-person and online community groups partly addresses this issue [ 4 , 13 , 15 ]. Accessing disability aid also appears to facilitate recovery from childhood stroke [ 15 ].

A growing body of literature supports the potential of online health communities to provide opportunities for individuals to share their personal experiences and learn from others with similar conditions [ 18 , 19 ]. These communities also serve as a reliable and novel source of information about patients’ unmet needs [ 20 , 21 ], complementing more traditional research methods [ 22 , 23 ].

There are an increasing number of studies that explore the barriers to and facilitators of recovery from pediatric stroke, considering that these factors may be numerous and long lasting as children have a long poststroke life expectancy. However, there are relatively few studies that characterize the long-term impact of stroke on children; currently, the longest time frame studied is 5 years after stroke [ 24 ]. In May 2017, the Royal College of Paediatrics and Child Health in the United Kingdom published The Stroke in Childhood Clinical Guidelines , which had a set of “research recommendations” that included “reviewing the complications that children experience” following pediatric stroke to assess the “ rehabilitation needs of pediatric stroke patients” and evaluate the “long-term outcomes” of survivors of pediatric stroke [ 25 ]. This study aims to address these recommendations by characterizing what survivors of pediatric stroke report as the main barriers and facilitators to their recovery in a UK-based online stroke community. As a secondary aim, the study also explores whether these factors last into adulthood or not, whether they change, or if new factors impacting recovery emerge in adulthood.

Study Design

We conducted a qualitative thematic analysis on posts from a pediatric stroke population within a UK-based online stroke community.

The analysis used the archived TalkStroke online community, a UK-based, moderated online community hosted on the Stroke Association website from 2004 to 2011. In total, the TalkStroke archive contains 22,173 posts written by 2583 unique usernames. A previous study by De Simoni et al [ 18 ] identified 58 usernames that posted about experiences of pediatric stroke, contributing to a total of 469 posts. We excluded some users: 2 after further analysis revealed that their age at stroke was >18 years and a further 4 users because their age at the time of posting was unknown. A sample of 52 users remained. The characteristics of the survivors of pediatric stroke, including demographics, employment, education, stroke type, initial impairments as well as impairments at the time of posting, support needs, and independence, were retrieved from the data set of a previous study [ 18 ].

Data Analysis

A deductive approach was used to develop predetermined themes before the start of the analysis. Factors (barriers or facilitators) were split into 4 themes based on recommendations by the Clinical Guidelines for Stroke in Childhood [ 25 ]: medical, physical, emotional, and social.

All relevant posts were collected in an Excel (Microsoft Inc) spreadsheet. WJAW and CH read all the posts to become familiar with the data. Themes were further split into subcategories using a data-driven approach by applying thematic analysis, as described by Braun and Clarke [ 26 ]. Coding was discussed until agreement was reached and a final coding framework was agreed upon. Each individual post was considered on its own, outside the context of the thread to which the posts belonged.

To consider the potentially different perspectives of participants over time, the posts were split into 2 categories: whether the survivor of pediatric stroke was aged ≤18 years or >18 years at the time of posting. This provided an assessment of whether the factors impacting recovery were short-term or long-term factors. We defined “long-term factors” as those affecting participants into adulthood and “short-term factors” as those impacting patients from the time immediately following a stroke until they reach 18 years of age. Sometimes, third parties (ie, parents or a member of the wider family) wrote on behalf of the survivor of pediatric stroke.

In this analysis, the term recovery describes the improvement of any aspect of stroke-related impairment. Rehabilitation is defined in concordance with the definition of the World Health Organization: “interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment” [ 27 ].

Patient and Public Involvement

A 22-year-old survivor of pediatric stroke (when aged 0 years) was contacted after the analysis was completed. The patient and public involvement (PPI) participant was an acquaintance of a coauthor’s friend and was approached informally. We obtained written consent for her contribution to the work to be included in the paper.

The initial results were written and sent to the PPI participant, who read and provided insightful comments that highlighted important subcategories and informed our Discussion section.

Ethical Considerations

The Stroke Association collected the data from the archived TalkStroke forum and provided the data set, together with their permission, for analysis for research purposes. The data are stored through the University of Cambridge Clinical School’s Secure Data Hosting Service, with reference S0126—Stroke Needs & Exp. This analysis was assessed by the University of Cambridge institutional review board and exempted from ethics approval, provided that permission to use the data was granted by the Stroke Association. At the time of registering with the community, users agreed that their data would be public. However, to protect the identity and intellectual property of participants, this analysis does not use direct quotes; instead, quotes are paraphrased. A more detailed account of the ethics involved with research on the TalkStroke archives is described in the study by De Simoni et al [ 18 ].

Participants’ Characteristics

In total, 79% (41/52) of users were aged ≤18 years at the time of participation, contributing a total of 273 posts; 21% (11/52) of users were aged >18 years and contributed 152 posts. The majority of data from the ≤18-year-old group were collected through third-party users (35/41, 85%). Of these, most were written by the mother of the survivor (31/35, 89%). Data from the >18-year-old group were reported firsthand by adult survivors of pediatric stroke ( Table 1 ).

Among the 11 participants who were aged >18 years at the time of posting, 2 (18%) held a driving license, 1 (9%) was considering applying for one, and 1 (9%) stated they do not drive. In total, 4 (36%) participants were university graduates or attending university, 1 (9%) was in part-time employment, and 1 (9%) was in full-time employment.

a Age at time of participation in the online stroke community.

b x: time or age between the 2 values.

c N/A: not applicable.

Causes of Stroke and Resulting Impairments

Of the 52 survivors, 13 (25%) were survivors of right-sided strokes, 22 (42%) were survivors of left-sided strokes, 2 (4%) were survivors of stroke affecting both sides, and 15 (29%) were not reported. The causes of stroke were reported for a small number of participants: 4 (8%) were after surgery (3/4, 75% was due to cardiac operations and 1/4, 25% was unknown); 6 (11%) were after infection (1/6, 17% was meningitis; 3/6, 50% was chicken pox; 1/6, 17% was herpes encephalopathy; and 1/6, 17% was maternal shingles during gestation); 2 (4%) were ischemic; 3 (6%) were hemorrhagic; 1 (2%) was linked to acute lymphoblastic leukemia treatment; 2 (4%) were dissections; 1 (2%) was linked to a brain tumor; 1 (2%) was linked to arterial stenosis; 1 (2%) was linked to a septal defect; 1 (2%) was linked to an oral contraceptive pill; and 30 (58%) were not reported.

The initial impairments after stroke included the following: hemiplegia, hemiparesis, poststroke epilepsy, visual disturbances, tiredness, increased emotions, dystonia, dysarthria, facial droop, memory impairments, headaches, and no impairments. The difference between initial impairments and residual impairments at the time of posting varied greatly for users. The time between stroke and participation in the community ranged from 2 weeks to 46 years.

The subcategories of the 4 themes are presented in Table 2 , which shows whether the factors are short term, mostly reported by parents discussing their children with stroke, or long term, as reported by adult survivors of pediatric strokes.

Medical Factors

Comorbidities.

Epilepsy and depression were most commonly mentioned. Parents found it tough to cope with the additional diagnosis of epilepsy alongside pediatric stroke, with some reporting seeing their children getting more ill rather than better:

A parent writes they were completely shattered as their child had already suffered so much. [Mother; participant 30; ≤18-year-old group; stroke at the age of 11 years; 2 years since the stroke]

One survivor wrote their depression sets them in a really low state of mind, where they cannot control their emotion. [Survivor; participant 47; ≤18-year-old group; stroke at the age of 15 years; 1 year since the stroke]

Another, 35 years after their stroke, queried if it was possible to still feel depressed due to the stroke. [Survivor; participant 36; >18-year-old group; stroke at the age of 0 years; 35 years after the stroke]

Medical Interventions

The survivors credited physiotherapy and speech therapy with helping them regain functionality and speech, respectively. The only downside mentioned was long waiting times to access services:

One parent advised others to get on top of physio immediately, saying that she went privately as waiting lists were long. [Mother; participant 12; ≤18-year-old group; stroke at the age of 1 year; 11 years after the stroke]

One adult survivor writes that having physiotherapy sessions helped her walk. [Survivor; participant 36; >18-year-old group; stroke at the age of 0 years; 35 years after the stroke]

Exercise was an activity recommended by medical practitioners that aided recovery. Parents and survivors mentioned the importance of repeatedly doing both general exercise and muscle-specific exercises to prevent muscle wasting, build muscle strength, help induce sleep, and increase fitness. Comments from the >18-year-old group also supported the utility of exercise, stressing the importance of regular daily activity. Swimming was written about consistently; it was recommended by parents as a way to get their children’s limbs to move, and it was noted that gains in swimming ability became an indicator of recovery and a source of excitement for the survivors and their families:

One individual advised parents to make a child do their exercises every day. [Survivor; participant 52; >18-year-old group; stroke at the age of 17 years; 21 years after the stroke]

One parent wrote that swimming is a great way of exercising and moving their child’s limbs without trauma. [Mother; participant 11; ≤18-year-old group; stroke at the age of 1 year; 1 year after the stroke]

Another wrote their child had 1 to 1 swimming lessons and could nearly do breaststroke again. [Mother; participant 25; ≤18-year-old group; stroke at the age of 8 years; 0 years after the stroke]

Other medical interventions that the participants mentioned were the use of Botox for tightness in muscles. Although it was often useful, it did not always help. In addition, the participants aged >18 years endorsed the use of SaeboFlex [ 28 ] for regaining functionality, tai chi for mental health, and quinine for muscle cramps and spasms.

Physical Factors

Fatigue was the most commonly reported physical barrier to recovery, with some parents writing that it was their main concern. When sleep duration was reported, it was at least 12 hours each night. The users told each other that tiredness was often caused by the large effort that the survivors were putting into their recovery. Fatigue was also a long-term factor:

A parent advised another that tiredness as a result of stroke is normal. [Mother; participant 26; ≤18-year-old group; stroke at the age of 9 years; 0 years after the stroke]

One user reported that there was underlying tiredness throughout middle age, when they were working full time. In another post, they wrote that having a stroke resulted in less stamina, tolerance and energy in the context of noisy, busy backgrounds. [Survivor; participant 45; >18-year-old group; stroke at the age of 15 years; 46 years after the stroke]

When a survivor became tired, this caused a worsening in disability. This affected speech, movement, and coordination:

A parent reported that when their child became tired on holiday, they were sad to see that their leg and arms were dragging. [Mother; participant 12; ≤18-year-old group; stroke at the age of 1 year; 0 years after the stroke]

Pain was another commonly cited barrier preventing people from feeling fully recovered. Sites of pain were varied, including back pain, headaches, and limb muscle cramps. Pain emerged as a long-term consequence of a pediatric stroke. When the users discussed their pain with medical professionals, they were told that it was a result of their stroke and that it would ease with time. Being cold exacerbated chronic pain both in the short and long term:

One user reported that their headaches were seriously affecting their everyday life. [Survivor; participant 47; ≤18-year-old group; stroke at the age of 15 years; 1 year after the stroke]

A user still has pain in their joints 35 years poststroke. [Survivor; participant 36; >18-year-old group; stroke at the age of 0 years; 35 years after the stroke]

A parent wrote that their child’s affected limbs were more painful in the cold weather. [Mother; participant 32; >18-year-old group; stroke at the age of 13 years; 1 year after the stroke]

Neurological Sequelae

Poststroke memory loss, confusion, and dizziness were the barriers to recovery both in the short and long term:

A parent described her child’s memory loss as causing as much trouble as the arm or foot. [Mother; participant 32; ≤18-year-old group; stroke at the age of 13 years; 1 year after the stroke]

An individual 3 years poststroke commented that his eyes are dizzy. [Survivor; participant 41; >18-year-old group; stroke at the age of 11 years; 30 years after the stroke]

Emotional Factors

Adult survivors of pediatric stroke stressed that positivity was an important factor in ensuring a successful recovery. It was mentioned less often by parents and younger survivors of pediatric stroke. However, humor was brought up by both groups as an important facilitator in coping with the consequences of stroke. Many possible fun activities were exchanged on the site. There was a large proportion of music-related activities, for example, singing songs with hand puppets:

One survivor stresses staying positive is the key to a successful recovery. [Survivor; participant 49; >18-year-old group; stroke at the age of 17 years; 2 years after the stroke]

One parent writes their family tries to laugh themselves through bad times, rather than cry again. [Mother; participant 32; ≤18-year-old group; stroke at the age of 13 years; 1 year after the stroke]

One parent wrote that music is a great mental stimulator as well as being fun. [Mother; participant 12; ≤18-year-old group; stroke at the age of 1 year; 0 years after the stroke]

Grief and Bereavement

Following a pediatric stroke, the survivors wrote that they viewed themselves as different people and grieved for the person they once were. The families of survivors also commented that they experienced similar emotions and that the stroke had a long-term effect on the whole family:

One parent commented they have a different child now. [Mother; participant 31; ≤18-year-old group; stroke at the age of 11 years; 5 years after the stroke]

Another survivor queried whether anyone on the forum felt that stroke was like a loss in the family and caused a grieving process. [Survivor; participant 51; >18-year-old group; stroke at the age of 17 years; 4 years after the stroke]

One parent commented that they don’t think any of their family will ever be the same as before the stroke. [Mother; participant 32; ≤18-year-old group; stroke at the age of 13 years; 1 year after the stroke]

Fear of uncertainty and the unknown was commonly cited as a barrier to recovery. Parents wrote that the fear of another stroke event, how their child will grow up and fit into society, and having no explanation of the cause of the stroke were particularly difficult issues. In contrast, adult survivors encouraged users to accept the stroke and not let fear stand in the way of recovery:

A parent wrote that it was hard to comprehend the unknown future. [Mother; participant 11; ≤18-year-old group; stroke at the age of 1 year; 1 year after the stroke]

One adult survivor wrote that acceptance of stroke is the first stage of the healing process and survivors must move on and get on with their lives. [Survivor; participant 46; >18-year-old group; stroke at the age of 15 years; 28 years after the stroke]

Both parents and survivors described the scenarios that caused upset by reminding them of the trauma surrounding the stroke event:

One parent writes that her daughter was admitted to hospital and it brings back too many memories which makes their calm slip a little inside. [Mother, participant 12; ≤18-year-old group; stroke at the age of 1 year; 0 years after the stroke]

An adult survivor training to be a health care professional writes that having a placement on a stroke unit is difficult to cope with. [Survivor; participant 51; >18-year-old group; stroke at the age of 17 years; 4 years after the stroke]

Behavioral Problems

Behavioral problems were commonly mentioned. Parents reported mood swings with negative emotions, such as getting upset, anger, and frustration. There were multiple posts trying to rationalize why these changes occur, possible reasons being parental spoiling of the child either before or after the stroke and typical teenage mood swings. Adult survivors of pediatric stroke mentioned some lasting behavioral problems:

A parent wrote that their child gets upset with how she feels and that her brain seems to tell her things that she can’t cope with. [Mother; participant 30; ≤18-year-old group; stroke at the age of 11 years; 2 years after the stroke]

One survivor wrote that he takes himself to bed when he gets really grumpy. [Survivor; participant 52; >18-year-old group; stroke at the age of 17 years; 21 years after the stroke]

Another survivor queries whether it is possible to have mood swings and feel low 35 years after a stroke as she is struggling. [Survivor; participant 36; >18-year-old group; stroke at the age of 0 years; 35 years after the stroke]

Social Factors

Support network.

Parents stressed the importance of supporting their children throughout the stroke recovery process. Support was appreciated by the survivors of stroke, who reiterated the importance of love and support in motivating them during recovery:

One parent wrote it is completely down to the family to get their child through recovery. [Mother; participant 12; ≤18-year-old group; stroke at the age of 1 year; 0 years since the stroke]

An adult survivor of pediatric stroke wrote that they fought every inch of the way with the love and support of their parents. [Survivor; participant 39; >18-year-old group; stroke at the age of 8 years; 23 years since the stroke]

A user mentioned their friend by name and thanked them for getting them over the mental side of things. [Survivor; participant 42; >18-year-old group; stroke at the age of 13 years; 7 years after the stroke]

Loneliness emerged in many contexts as both a short-term and a long-term barrier to recovery from stroke. Loneliness made the survivors feel different from those around them, which negatively impacted their well-being. The survivors felt isolated from fellow survivors of stroke, friends, family, and peers:

A male survivor wrote he struggled to find any help and support with his rehabilitation. [Survivor; participant 43; >18-year-old group; stroke at the age of 13 years; 7 years after the stroke]

A female survivor commented she never talks about her stroke to her friends because she doesn’t want to be judged. [Survivor; participant 36; >18-year-old group; stroke at the age of 0 years; 35 years after the stroke]

The parent of a survivor writes that her child’s class look at him differently. [Mother; participant 20; ≤18-year-old group; stroke at the age of 3 years; 2 years after the stroke]

Loneliness had long-lasting effects on survivors of stroke:

One member of the >18 group reported they felt alone most of their life. They then go on to tell a user they have done the best thing joining the site. [Survivor; participant 36; >18-year-old group; stroke at the age of 0 years; 35 years after the stroke]

Exclusion or Bullying

There were reports of bullying and exclusion behaviors among children at school. Furthermore, parents reported that social restrictions, such as not allowing the survivors to ride a bicycle or go out with friends, were a barrier to recovery:

A survivor’s mother wrote that her daughter is taunted at school by her own friends for having a stroke. [Mother; participant 26; ≤18-year-old group; stroke at the age of 9 years; 0 years after the stroke]

One parent wrote that the restrictions placed on her son prompted him to tell them that he may as well be dead. [Mother; participant 22; ≤18-year-old group; stroke at the age of 5 years; 4 years after the stroke]

Hidden Disabilities

Being doubted about their degree of disability was reported by several adult survivors of pediatric stroke. They described the medical staff and the public as not understanding the hidden effects of stroke and assuming that if there are no visible impairments, they are recovered. This discredited the survivor’s struggle for recovery and made them feel upset:

A survivor wrote how she told a midwife about her stroke and the midwife’s response was that because they hadn’t noticed at first glance, it couldn’t have affected the survivor that badly. The survivor commented how angry that made her feel. [Survivor; participant 36; >18-year-old group; stroke at the age of 0 years; 35 years after the stroke]

A survivor reported people discrediting their tiredness, accusing them of being selfish or lazy. [Survivor; participant 51; >18-year-old group; stroke at the age of 17 years; 4 years after the stroke]

There were mixed reviews about the education services accessed; however, interaction with the education sector was highlighted as important in getting the survivor of pediatric stroke back into school and therefore integrating back into society:

One parent writes that her child’s new school is not dealing with her needs very well, and they have had to go in on several occasions. [Mother; participant 32; >18-year-old group; stroke at the age of 13 years; 1 year after the stroke]

There was concern from parents of survivors of stroke as to whether their children could drive. There was much reassurance and advice given by other parents and survivors in the >18-year-old group:

One parent writes that her child had his stroke at 11 and was then 16 and wondered if he would be able to drive. [Mother; participant 31; ≤18-year-old group; stroke at the age of 11 years; 5 years after the stroke]

One survivor commented he overcame medical predictions and had been driving since the age of 21. [Survivor; participant 46; >18-year-old group; stroke at the age of 15 years; 28 years after the stroke]

Parents reported that obtaining travel insurance for their child was difficult. Many companies did not provide insurance at all; they only insured per trip and not for longer periods as parents wanted, and the price of insurance was high, deterring the families from traveling:

One parent commented that they found it mind-blowing that they must pay so much and no one else will cover them. [Survivor; participant 52; >18-year-old group; stroke at the age of 17 years; 21 years after the stroke]

Third-Party Support

The members often recommended external resources to each other. These were most often helplines or information on websites. Organizations that were mentioned were the Stroke Association [ 1 ], HemiHelp [ 29 ], Maypole project [ 30 ], Different Strokes [ 31 ], Mobilise [ 32 ], Disability Information and Advice Line [ 33 ], and Headway [ 34 ].

Financial Support

Financial support for disability was available for survivors of pediatric stroke and was identified as helpful. However, there was discussion among adult survivors of pediatric stroke who expressed fear of having financial support taken away from them:

One survivor wrote that they had read an article about how people with mental health issues are more likely to fail the assessment test, as they have multiple symptoms which vary and she was worried that this would disadvantage stroke survivors also. [Survivor; participant 45; >18-year-old group; stroke at the age of 15 years; 46 years after the stroke]

PPI Feedback

The analysis was read by a survivor of multiple childhood strokes while aged <1 year who is now studying at a university. She reported strongly agreeing with uncertainty about the future, the benefits of swimming, the hidden disabilities because of stroke, and the lack of public awareness of pediatric stroke. Some quotes are reported in the subsequent section to illustrate the PPI feedback:

• Regarding swimming:

I was also told it was important for me to swim to help prevent any damage as I developed so swam from 6 months on.

• Uncertainty about the future:

This strongly resonates with me and my family. For my parents it was a huge unknown as the doctors couldn’t tell them if I would be able to walk, speech or do well in school. They also couldn’t tell if I was going to have another one, but if I didn’t have another by 12 I should be clear from not having another.

• Hidden disabilities:

I would agree hidden effects of a stroke are not spoken about. In the main all I was warned of was physical disabilities and those which would be major hindrances in my life. By this I mean walking, talking, learning and doing physical exercise/sport well. Once it was clear at ~7 or 8 year old I was able to conduct those tasks no further check ups were taken and no-one checked for any other less major/obvious effects. As for the public, I would strongly agree many have no idea of the effects of strokes, even I didn’t realise tiredness was an effect until I read this paper! I have an absolutely terrible memory and I do think if this is very likely down to my stroke and this I would say is a hidden disability. I’m almost certain my stroke affected the memory side of my brain so it would make some sense. However, I assume few members of the public would understand this and no medical staff checked or mentioned smaller effects other than physical movement/speech/learning.

Principal Findings

Medical, physical, emotional, and social themes were identified as impacting the recovery from pediatric stroke. Exercise, swimming, speech therapy, and physiotherapy were the medical factors that facilitated recovery, whereas having a comorbidity hindered recovery. A novel finding of this study is that “hidden” physical impairments, such as fatigue, pain, memory loss, confusion, and dizziness, affected survivors of pediatric stroke in the long term, with the lack of awareness of these impairments by the general public and by professionals in health care, school, and workplace settings also hindering recovery. Grief, fear of the future, restrictions on the child’s life, and behavioral problems were the emotional factors that slowed recovery, whereas positivity and a good support network aided recovery. Isolation, hidden disabilities, triggering events, finding travel insurance, and fear of not being able to drive were the social factors hindering recovery. Third-party support and financial aid were facilitators of recovery, albeit there was a fear of losing financial aid as survivors of pediatric stroke aged.

Identifying the factors that impact recovery from pediatric stroke is important, as there is the potential for survivors to live for many decades after the stroke, and therefore, they may live many years with disabling factors. Our study found that fatigue persists many decades after stroke, which expands on current literature that fatigue is an identified barrier up to 5 years after the stroke [ 8 ]. In addition, tiredness was reported to exacerbate stroke-related disabilities. This relationship has been reported in adult brain injury [ 35 ], but to the best of our knowledge, this is the first time it has been reported in pediatric stroke. In addition, this study is the first to report chronic pain as a barrier to recovery in pediatric stroke, despite chronic pain being well known because of adult stroke [ 36 ].

Rehabilitation therapies are recommended following pediatric stroke; however, there is little evidence that describes survivors’ experiences of these services. This study was the first to report that survivors of pediatric stroke found that both muscle-specific exercise and general exercise helped in recovery. The Royal College of Physicians national guidelines for adult stroke recommend muscle-specific exercises to improve functionality and found general exercise to help aerobic fitness, gait, and prevent regression of cognitive and functional gains after stroke as well as have positive psychological effects [ 37 ]. To our knowledge, no such research has established this for pediatric stroke. A new finding from this study was that swimming facilitated recovery. This has not been researched in relation to pediatric stroke, but a feasibility study on an introductory performance-focused swimming intervention for adult cerebral palsy found that swimming helped fatigue, physical function, and mental health [ 38 ]. Speech and language therapy is commonly used during rehabilitation, despite a lack of evidence [ 25 ]. This study provides qualitative evidence that participants found this intervention useful and recommended it to other users. Similarly, this is the first qualitative study to explore patients’ experiences of physiotherapy.

Our study found that stroke-related social restriction on a child’s life has a negative emotional effect. This is an important finding, as survivors of pediatric brain injuries, including stroke, commonly have lower levels of community activity and peer social play at school [ 39 ]. Another finding from this study was that isolation and exclusion were barriers to recovery. Denham et al [ 15 ] found that following a pediatric stroke, families feel abandoned by friends or their intimate support network. Our study further characterized this dimension as “isolation” from other survivors, friends, the wider family, and society. Bullying has also been found to be a barrier in previous studies [ 40 , 41 ]. Uncertainty about the future has also been reported [ 12 ]. This study found this is a short-term barrier, as participants in the >18-year-old group did not share this concern, instead putting the stroke behind them and being more positive about the future. Financial support is accessible after recovery from stroke. However, a new finding from this study was that there was a long-term fear of losing financial support as disability allowance was reassessed. Driving is an important indicator of independence and recovery after an adult stroke [ 42 ]. This study found that the parents and the survivors were concerned about whether they could drive after a pediatric stroke, and this concern was often expressed many years after the stroke. This was only a short-term concern, as the users were reassured by adult survivors of pediatric stroke who had driving licenses and could explain the process of learning to drive with a disability. Difficulty obtaining travel insurance has been reported so far only in the literature on adult stroke [ 43 ].

This study found that both parents and children experienced anxiety-triggering events that reminded them of the happenings of their original stroke. Although a diagnosis cannot be reached from these comments, Lehman et al [ 44 ] found increased symptoms of posttraumatic stress disorder in children and their parents, suggesting that the memory of stroke has long-lasting emotional effects on the family. Our findings support previous evidence that developing comorbidities [ 3 - 7 ], behavioral problems [ 4 , 9 ], and the bereavement process caused by the stroke [ 45 ] were factors hindering recovery. A good support network [ 13 ] and third-party support and information aided recovery [ 4 , 13 , 15 ], and the users often recommended useful resources to each other.

Strengths and Limitations

The strength of this study lies in the source of data, which is a UK-wide online community with several survivors of pediatric stroke at varying stages in their lives. First, the community facilitated the discussion between participants who had a stroke recently and users who had a stroke many years ago. This allowed unprecedented insight into longer-term factors inhibiting recovery. Second, the discussions were initiated by the participants and continued in an asynchronous way, with no time, geographical, or behavioral constraints on communication. This dynamic cannot be replicated in traditional research approaches, for example, in interviews. Finally, the population that uses the forum might include people who do not partake in traditional research studies, thereby including perspectives from an underrepresented patient population [ 23 ]. The limitations of this study are that the users may not mention all the factors that affect their recovery; therefore, our analysis may not be comprehensive. First, this may be because the users do not raise everything pertinent to the research question, the users were only active over a limited period of their recovery, or the forum was moderated, so some posts may have been removed or affected by the moderation process. Second, the authenticity of posts could not be determined. Third, the data set is individuals aged >10 years, and factors affecting recovery may have changed in the time between the posts and this analysis. PPI feedback was limited to a single individual. Finally, there is a nonactive population that reads but does not compose messages. These users may be more numerous than the registered users themselves; one study [ 46 ] reported a 26:1 ratio of lurkers for every author of a message in an online forum. This population cannot be quantified or classified.

Conclusions

This study identified novel findings regarding factors affecting recovery from pediatric stroke. Raising awareness about the lived experience of survivors of pediatric stroke and the type and impact of long-term impairments is needed in health care settings, schools, workplaces, driving centers, and travel agencies so that appropriate support and information can be provided. Recovery from a stroke is an evolving process that lasts decades. Although this study has highlighted some long-term factors impacting recovery, more research needs to be performed to further establish these as well as design interventions to alleviate these barriers. This will result in effective, long-term support for survivors. In particular, fatigue, pain, and loneliness were the physical problems that were present many decades after the stroke, and there are no effective interventions reported yet.

Acknowledgments

The authors are grateful to the Stroke Association for sharing the archived file of TalkStroke on the web with them. The authors thank their patient and public involvement representative for comments on the manuscript.

ADS was partly funded by a National Institute for Health and Care Research (NIHR) Programme Grant for Applied Research (NIHR202037). The views presented in this paper are those of the authors and not necessarily those of the National Health Service, NIHR, or the Department of Health and Social Care.

Conflicts of Interest

None declared.

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Abbreviations

Edited by A Mavragani; submitted 29.05.23; peer-reviewed by G Engvall; comments to author 15.01.24; revised version received 04.02.24; accepted 08.03.24; published 16.04.24.

©Charlotte Howdle, William James Alexander Wright, Jonathan Mant, Anna De Simoni. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 16.04.2024.

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 the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

• Open access
• Published: 12 April 2024

Healthcare team resilience during COVID-19: a qualitative study

• John W. Ambrose 1 ,
• Ken Catchpole 2 ,
• Heather L. Evans 3 ,
• Lynne S. Nemeth 1 ,
• Diana M. Layne 1 &
• Michelle Nichols 1  

BMC Health Services Research volume  24 , Article number:  459 ( 2024 ) Cite this article

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Metrics details

Resilience, in the field of Resilience Engineering, has been identified as the ability to maintain the safety and the performance of healthcare systems and is aligned with the resilience potentials of anticipation, monitoring, adaptation, and learning. In early 2020, the COVID-19 pandemic challenged the resilience of US healthcare systems due to the lack of equipment, supply interruptions, and a shortage of personnel. The purpose of this qualitative research was to describe resilience in the healthcare team during the COVID-19 pandemic with the healthcare team situated as a cognizant, singular source of knowledge and defined by its collective identity, purpose, competence, and actions, versus the resilience of an individual or an organization.

We developed a descriptive model which considered the healthcare team as a unified cognizant entity within a system designed for safe patient care. This model combined elements from the Patient Systems Engineering Initiative for Patient Safety (SEIPS) and the Advanced Team Decision Making (ADTM) models. Using a qualitative descriptive design and guided by our adapted model, we conducted individual interviews with healthcare team members across the United States. Data were analyzed using thematic analysis and extracted codes were organized within the adapted model framework.

Five themes were identified from the interviews with acute care professionals across the US ( N  = 22): teamwork in a pressure cooker , consistent with working in a high stress environment; healthcare team cohesion , applying past lessons to present challenges , congruent with transferring past skills to current situations; knowledge gaps , and altruistic behaviors , aligned with sense of duty and personal responsibility to the team. Participants’ described how their ability to adapt to their environment was negatively impacted by uncertainty, inconsistent communication of information, and emotions of anxiety, fear, frustration, and stress. Cohesion with co-workers, transferability of skills, and altruistic behavior enhanced healthcare team performance.

Working within the extreme unprecedented circumstances of COVID-19 affected the ability of the healthcare team to anticipate and adapt to the rapidly changing environment. Both team cohesion and altruistic behavior promoted resilience. Our research contributes to a growing understanding of the importance of resilience in the healthcare team. And provides a bridge between individual and organizational resilience.

Peer Review reports

Introduction

The COVID-19 pandemic highlighted the complexity and dynamic nature of healthcare systems. It also created a unique opportunity to look at the concept of resilience through the lens of the healthcare team versus the more common approach of situating the concept within the individual or the organization. The early phase of the pandemic was marked by challenges, such as limited access to personal protective equipment, personnel shortages, drug shortages, and increased risks of infection [ 1 , 2 ]. Ensuring patient safety and proper functioning requires coordination and adaptation of the healthcare team and various processes across the health system infrastructure [ 3 , 4 ]. Resilience results from adaptive coordination which enables healthcare systems to maintain routine function in the face of all conditions [ 5 , 6 ].

Resilience in healthcare has been operationalized through resilience engineering, an interdisciplinary aspect of systems engineering focused on promotingpatient safety through the design, implementation, and management of healthcare systems [ 7 , 8 , 9 ] (e.g., how healthcare systems adapt and adjust to maneuver through the daily complexities and challenges to identify effective practices, prevent errors and maintain resilient performance) [ 6 , 8 , 9 , 10 , 11 ]. Resilient performance in healthcare is proposed to be the net result of reaching the threshold of four resilience capabilities within the system: anticipation, the ability to expect and prepare for the unexpected; monitoring, the ability to observe threats to daily system performance; responding, the ability to adapt how the performance is enacted; and learning, the ability to learn from present and past accomplishments within the system [ 12 ]. At present, there is a paucity of research on the resilience of the healthcare team as a cohesive, singular conscious source of knowledge in a highly complex healthcare system. While the resilience of both healthcare systems [ 11 , 13 ] and healthcare workers [ 14 ] has been investigated, there is a gap in knowledge specific to the resilience of the healthcare team as a unified singular consciousness. The circumstances surrounding the COVID-19 pandemic presented a unique opportunity to understand the resilience of the healthcare team in a highly complex system as a singular aware entity within the system; how it acknowledges itself, defines its purpose, and performs under extenuating circumstances. This shifts the emphasis of individual and organization resilience to the resilience in the interconnected healthcare team that extends beyond the boundary of any single person.

The adapted model situates the healthcare team as a cohesive singlular conscious source of knowledge within an intricate and highly complex system [ 15 ]. This model was designed as a bridge between resilience found in individuals within the healthcare system and the organization to emphasize the healthcare team as an aware, unified whole. Our model [ 15 ] combines the existing Systems Engineering Initiative for Patient Safety (SEIPS) model [ 16 ] (version 1), which is based on five domains (organization, person, tasks, technologies, and tools), and environment and the Advanced Team Decision Making Model [ 17 ], which includes components for team performance [ 17 , 18 , 19 ]. Team performance is comprised of team identity, team cognition, team competency, and team metacognition [ 17 , 18 , 19 ]. Team identity describes how the team identifies their purpose to help one another [ 17 ]. Team cognition describes the state of mind of the team, their focus, and common goals [ 17 ]. Team competency describes how well the team accomplishes tasks, and team metacognition describes problem solving and responsibility [ 17 , 19 ], Fig.  1 .

Healthcare Team as a cohesive, singular conscious source of knowledge in a highly complex system. The continuous variegated border represents the singularity and connectedness of the healthcare team within the system. The gears represent the processes, people, technology, and tasks within this highly dynamic healthcare system

The purpose of this qualitative research was to describe resilience in the healthcare team during the COVID-19 pandemic with the healthcare team situated as a singular conscious source of knowledge defined by its collective identity, purpose, competence, and actions. Additionally, we sought to identify factors that may facilitate or hinder the healthcare team from achieving the necessary capabilities to monitor, anticipate, adapt, and learn to meet the standard for resilient performance.

Methodology

A qualitative descriptive design [ 20 , 21 ] was employed. The interview guide was framed using the adapted model to explore various aspects of healthcare team performance (identity, purpose, competence, and cognition). These questions were pilot tested on the first 3 participants and no further changes were needed. Specifically, we aimed to investigate resilience capabilities, decision-making processes, and overall healthcare team performance.

Sampling strategy

A purposive snowball sample was used to identify healthcare team members who worked in U.S. acute care settings between January 2020–December 2020. This sampling method was used to ensure recruitment of participants most likely to have insight into the phenomenon of resilience in the acute care setting.

Inclusion criteria

To explore a wide range of interprofessional experience, participants were recruited across geographic regions and professional roles through personal contacts and social media [ 22 , 23 , 24 , 25 ]. Eligible participants included English-speaking individuals ages 20 and older with a valid personal email address, internet access, and the ability to participate in an online video interview. Potential participants had to be employed full or part-time for any period from January 2020–December 2020 in any of the following acute healthcare environments: emergency room (ER), intensive care unit (ICU), COVID- 19 ICU, COVID-19 floor, gastroenterology inpatient unit, endoscopy suite, operating room (OR), post anesthesia recovery room (PACU), pre-operative holding area, hospital administration, or inpatient medical and/or surgical patient care unit.

Exclusion criteria

Healthcare team members who did not complete the pre-screening survey or failed to schedule an interview were not enrolled.

National recruitment in the U.S

Upon approval by MUSC Institutional Review Board (IRB), registered under Pro00100917, fliers, social media posts on Twitter TM (version 9.34 IOS, San Francisco, California) and Facebook TM (version 390.1 IOS, Menlo Park, CA), and word of mouth were used to initiate recruitment efforts. Interested participants were sent a link to an electronic screening survey explaining the purpose of the study and verifying the respondents’ eligibility to participate. Informed consent was obtained from all subjects.

Data collection

Data were collected via an initial screening questionnaire to determine eligibility. Data were managed using REDCap™ (version 11.2.2) electronic data capture tools hosted at MUSC. Demographic data included age, sex, race, professional role, years of experience, geographic region, patient population served, practice specialty area, and deployment status during the pandemic. Deployment refers to the reassignment of personnel from their primary clinical area to another area to meet the demands of another clinical area without regard for the participant’s clinical expertise. Qualitative data were collected through semi-structured audio video recorded interviews to understand the healthcare team in their natural environment. Recorded interviews were conducted via Microsoft® Teams (version 1.5.00.17261, Microsoft Corporation) from the PIs private office to mitigate the risk of COVID-19 transmission and promote participation across the U.S.

Data monitoring and safety

The quality of the demographic data was monitored to ensure completeness. Potential participants who submitted incomplete responses on the questionnaire were excluded. Interviews were transcribed using software, transcriptions were reviewed and verified for accuracy, and then uploaded to MAXQDA Analytics Pro, Version 2022 (VERBI software) to facilitate data analysis. Transcripts were not returned to the participants. Qualitative codebooks, institutional review board (IRB) logs, and other study records were stored on a secure university server, with access limited to authorized study personnel. Adherence to Consolidated Criteria for Reporting Qualitative Research (COREQ) standards were maintained throughout the study and analysis [ 26 ].

Data analysis

Quantitative analysis.

Demographic data were analyzed using SPSS Statistics for MAC, version 28 (IBM). Both descriptive statistics for the continuous variables of age and years of experience (mean, standard deviation) and frequency tables (age, sex, race, role, geographic region, population served, deployment status) were analyzed.

Qualitative analysis

The Principal Investigator (PI) (JA) and senior mentor (MN) independently coded the interview transcripts. Open coding method was used to identify the categories of data [ 22 , 27 ]. Both a reflexive journal and audit trail were maintained. Codes were identified through induction from participant experiences and verified through weekly consensus meetings, while theoretical deductive analysis was guided by the adapted model and the four resilience capabilities (anticipation, monitoring, responding, learning [ 12 ]. Reflexive thematic analysis (TA) [ 28 , 29 , 30 , 31 ] was used to analyze the coded data and generate themes. Data were collected and categorized into the codebook until no further codes were identified by the PI and research mentor [ 22 , 27 ]. Participant checking was not employed.

Demographics

The eligibility pool was established based on survey completion. Eighty-nine healthcare team members opened the online screening survey; 21 were incomplete and eliminated from the dataset, which left a pool of 68 potential eligible participants. Eligible participants (100%) were contacted by email and phone to determine their interest in completing the study interview. Twenty-two participants completed screening surveys and study interviews between May–September 2021, equating to a 32.5% enrollment rate. Participant interviews lasted between 21 and 91 min with an average of 43 min. None of the interviews were repeated. Participant demographics, including descriptive statistic and role key, are noted in Tables  1 and 2 , respectively.

Five themes were identified: team work in a pressure cooker , healthcare team cohesion , applying past lessons to present challenges , knowledge gaps , and altruistic behaviors .

Teamwork in a pressure cooker

The theme teamwork in a pressure cooker describes the relentless pressures and emotional stressors (e.g., fear, anxiety, frustration, and stress) experienced by the healthcare team from the risks and potential threats associated with COVID-19 contamination and infection. Factors associated with these pressures included risk of COVID-19 exposure, lack of COVID-19 testing, rapid changes to policies and procedures from the standard, personnel shortages, limited physical space, and limited supplies. Exemplary quotes highlighting participant descriptions of these pressures or subthemes are noted in Table  3 .

The healthcare team described an unprecedented level of stress in the workplace as the healthcare team had to adjust to rapidly changing protocols. The lack of protective equipment, shortage of providers to perform patient care and a lack of a familiar clinical routine saturated them in overwhelming pressure and emotions that stuck to them as they navigated uncharted territory. Exemplary quotes highlighting the healthcare team’s descriptions of these emotions are noted in Table  4 .

“It was…uncharted territory for me.” (P1, DIR) “You were stuck in a situation you never— you didn’t know when it was going to end.” (P4, RN PACU) “They have not enough staff—they can’t do it—they—I don’t know what we’re going to do.” (P6, DIR). “When we deployed—trying to get re-accustomed to the changes—with the needs that had to be met was very difficult.” (P10, RN ENDO) “I wasn’t about to sign up for extra time working in under those stressful conditions.” (P17, RN PACU)

The fear of the unknown, combined with the constant need to adapt to rapidly changing circumstances, led to widespread stress, frustration, anxiety, and exhaustion within the healthcare team. This theme was characterized by the constant pressure both inside and outside of work experienced by the healthcare team.

“Driving to the hospital, crying, driving back from the hospital, crying, still doesn’t sum it up— surrounded by people who were just dying. And what could you do?” (P6, DIR) “It was constant. It was terrible. I couldn’t sleep at night. I’d wake up worried.” (P8, ER MD) “It was kind of like just keep sending the Calvary forward—and when one drops, you just walk over them.” (P17, RN PACU) “It was always there—COVID here, COVID there—you never could just completely get away from it. It was basically the center of everybody’s conversation everywhere you went or if you were on the phone with somebody.” (P18, RN COVID ICU) “I was having to call my parents before I’d leave my apartment to go into work— to vent to them and cry— to let out my frustration and my anxiety—and have them essentially convince me to go into work.” (P19, RN ICU). “Working so much— COVID was all that was on my brain—and it was a lot of pressure.” (P22, MGR)

Working during COVID-19 challenged the resilience of the healthcare team in the face of constant fear and uncertainty. The pressure to maintain team performance, while dealing with constant fear associated with the pandemic effected the healthcare team’s resilience.

“I have to tell you that after being in hospital—I don’t feel resilient right now— doing all the things I’ve done—I just want to be out of the hospital— [crying] I can tell you that it will stay with me the rest of my life— It will always stay with me.” (P6, DIR) “I feel like my team has used up all of their resilience. I don’t think there’s much left.” (P8, ER MD)

However, one team member stood out as an exception. They reported the pressures from the environment helped them to make decisions. This demonstrates that environmental pressures affect members of the healthcare team differently. They reported that the pressure and intensity of the situation sharpened their focus and allowed them to make choices more quickly and effectively.

“I make better decisions when I’m under pressure.” (P22, MGR)

Healthcare team cohesion

The theme healthcare team cohesion describes the unique experience of working together during the pandemic that created a means among the healthcare team to form close relationships and unite. This bond was characterized by the emergence of strong interpersonal connections among healthcare professionals during the COVID-19 pandemic. These connections shaped healthcare team relationships and were a factor in the collaborative decision-making processes within healthcare team for their day-to day functions. This cohesive bonding was fueled by the stress and uncertainty of the situation, which brought the healthcare team together illustrated by their solidarity, camaraderie, trust, and empowerment.

“All those decisions, important decisions were made together.” (P7, CRNA) “Everyone felt like they were they were, you know, in a in a battle zone and on the same side—and so that kind of brought people together.” (P8, ER MD) “I think our team worked as one.” (P11, CEO)

Solidarity described the sense of unity evident among the members of the healthcare team. This was characterized by connectedness and a sense of reliance on one another that promoted teamwork and resilience within the team from support both given and received. The sub-theme camaraderie described the close personal connection and support between the healthcare team that went beyond normal social interactions prior to the pandemic. These connections were filled with trust and respect for other healthcare team members.

“I think we were all trying to do the best we could do and help each other do the best they could do—I think early on just camaraderie helped a lot within the department and, you know, just relying on each other for support.” (P8, ER MD) “We knew that we can depend on each other and we all had different skill sets— I think that that was very important—that made us feel secure— rather than going alone.” (P10, RN ENDO) “We [The ICU Nurses] developed a sense of camaraderie that I mean, it’s nothing I’ve ever felt before, like we had to trust each other with our licenses, with our own health—my resiliency came from my coworkers.” (P14, CHG RN) “One of the things that I think the pandemic did in a positive—was—I believe that the teams that I worked for really started to solidify. We leaned on each other. I felt more of a team environment than I had had pre-pandemic—I felt that people were a bit better together. We all needed each other, and we all leaned on each other, and we gave each other support—more so than before COVID- 19.” (P15, CRNA) ”The nurses on the unit were always there for me—they became my friends— my family.” (P19, RN ICU)

The sub theme of empowerment referred to the ability of the healthcare team to confidently make decisions and assume responsibility for their actions within the healthcare setting. This process involved a sense of authority and the ability to exercise agency in decision-making together to respond and adapt to the demands the healthcare team experienced. The combination of solidarity, camaraderie, trust, and empowerment resulted in a strong sense of cohesion within the healthcare team which led to improved relationships and enhanced resilience in their performance.

“I felt that I felt that the team—we all needed each other and we all leaned on each other and we gave each other support—more so than before COVID.” (P15, CRNA) “How do you want to handle this? What’s the plan?—and we collaborated in the true sense of collaboration.” (P15, CRNA) “We just knew that we could count on each other—we knew that we could count on each other at any time if we had questions, because we all worked so closely together during this. We really became a really tight knit group, and it was great.” (P22, MGR)

The benefits of the cohesion found in the healthcare team were significant and apparent during the COVID-19 pandemic. The strengthened relationships and increased resilience allowed for improved communication and collaboration, leading to better patient care and outcomes. Despite these advantages, it was noted by one participant that the relationships developed were not sustained beyond the peak of the pandemic.

“Now that COVID is kind of at bay in our area, it’s kind of gone back to the same way it was— it has not stuck.” (P15, CRNA)

Applying past lessons to present challenges

The theme applying past lessons to present challenges describes how the knowledge and understanding gained from prior participant experiences was used to adapt to the novel clinical and infrastructural challenges faced during the pandemic. Past experiences facilitated the healthcare team to strategize ways to meet the demands of the healthcare system during this time.

Participants described two strategies the healthcare team used to improve the system’s ability to adapt and function effectively: changing roles and deploying personnel. The process of changing roles involved assigning new responsibilities to individuals based on priority-based initiatives, while deployment involved transferring clinical staff from areas with lower patient care needs to those with higher needs to optimize their utilization. Eleven participants (50%) were affected by these strategies. Of these, 73% were assigned to clinical areas for direct patient care, while the remaining 27% underwent a role change to support the operational needs of the system. The participants’ preexisting work relationships, specialized clinical expertise, and leadership abilities helped them adapt to their new clinical and non-clinical roles, which in turn enhanced the resilience of the healthcare team.

“We wanted to make sure that we were putting people into the right area where their skill set could be used the best.” (P1, DIR) “I’m known for moving people forward—I’m also well known for speaking up when I don’t think it is right and there was a lot of stuff that I didn’t think was right— and not only speaking up, I’m also going to come with the solution.” (P6, DIR)

Participants indicated the lessons learned from prior experience positively impacted team performance and improved patient care outcomes. There were two significant examples in the data: the perspective of a nurse who was redeployed to work in an obstetrics unit (P5, ENDO RN) and the perspective of a nursing director (P6, DIR) whose role was changed to develop a program to ensure adequate staffing.

“Because we [the team of interprofessionals] were all very familiar with what we had to do at the task, at handit [the experience of the provision of care] was very fluid—I think it’s because of our years of experience and working with each other for so long that it just worked out very well ”. (P5, ENDO RN) “Staff believed in me when I said I would do something— I could galvanize people because of my reputation of caring for staff, so I was chosen specifically because of my ability to move people forward in spite of things.” (P6, DIR)

Participants identified being assigned to unfamiliar clinical areas or working with unfamiliar patient populations as a barrier that hindered their ability to adapt to clinical situations. The lack of clinical competence among some personnel led to an increase in workload for other healthcare team members, who had to provide additional instruction and guidance on how to complete the task. Decision-makers who deployed nursing staff to a clinical area with higher staffing needs may have believed that the individual nurse had specific clinical skills that would be helpful in that area, and this was not the case.

“She [the patient] felt like it was that he [the new nurse]—really didn’t know what he was doing—not only were we kind of reintroduced to that role of caring for patients where we haven’t been recently, but we’re also in a teaching mode, too, for the new nurses—we had to prioritize how sick the patients were, from basic vital signs to wound dressings to respiratory, and help those new nurses know which to attend to first.” (P10, RN ENDO) “Nurses weren’t really put in a place with enough support and enough resources to be able to do a job, and to do a job that maybe they haven’t done for a few years.” (P10, RN ENDO)

The participants indicated that clinical competencies of a healthcare provider in one patient population may not necessarily be applicable to another patient group. For instance, a neonatal intensive care unit (NICU) nurse who has experience in managing Extra Corporeal Membranous Oxygen (ECMO) in newborns may not have the necessary skills to care for adult ECMO patients in an adult COVID-19 intensive care unit.

“The ECMO nurse was a NICU nurse, so she really could not help me.” (P14, CHG RN)

Knowledge gaps

The theme knowledge gaps refers to the disparity between the existing knowledge of the healthcare team and the knowledge required for the team to effectively respond and adapt to the needs of the healthcare system. The lack of COVID-19 specific knowledge led to gaps in the healthcare team’s understanding, while the lack of communication made it difficult for necessary information to be effectively conveyed and received (e.g., medical logistics, human resources, and other operational policies and procedures). This knowledge gap created a barrier to healthcare team resilience as their capacities to surveil, anticipate, and respond were diminished from the lack of knowledge.

“That [information] is pretty fundamental to how you [the healthcare team] function.” (P17, RN PACU) “I don’t think any amount of preparation could have actually prepared us for how bad COVID was—but we were very, very, very unprepared.” (P18, RN COVID ICU) “It was confusing, it was disruptive to the patients that we had there. They sensed that. And that’s— OK—screw with me, screw with my colleagues, but don’t screw with the patient.” (P21, RN ENDO)

All the participants in leadership roles during the COVID-19 pandemic emphasized the importance of having a thorough understanding of the information and effectively communicating it to the frontline healthcare team members most involved in providing patient care.

“There’s nothing worse than having to learn something in the moment and not being prepared for it.” (P1, DIR) “That made us communicate in multiple ways throughout a day because we all know people learn and adapt it could be in print. It could be in person; it could be a video. We tried to have multiple ways of getting messages out and knowing we needed to repeat messages because this was so unknown, and people were so stressed.” (P11, CEO)

One team member (P13, CRNA), highlighted areas where there were gaps in knowledge in greater detail.

“It was as if the unit was being run by all these sort of substitute teachers that were called in at the last minute. Nobody knew where stuff was—nobody knew what the protocol was—the communication was terrible.” (P13, CRNA)

The cumulative effect from the knowledge gaps contributed to the lack of a practical working knowledge for the healthcare team and affected the healthcare team’s ability to anticipate what needed to be done and adapt their performance to accomplish it. Despite knowledge gaps, healthcare team members reported their capability to learn was facilitated by incremental gains in practical knowledge through their experience over time.

“—people got to be experts at protecting patients and keeping themselves safe.” (P8, ER MD) “I think it kind of was like on the job training at that point, I felt like we were all just trying to survive—learning was like—you went out —then you came back, and you would share how things went.” (P15, CRNA) “You tried to educate yourself so you could be safe.” (P17, RN PACU)

The participant responses received from the leadership (CNO, Directors, and Manager) and front-line personnel (administrative staff, nurses, and physicians) regarding the importance of communication highlighted a difference in perspective. Leadership exhibited a strong commitment toward effective communication and made efforts to ensure all healthcare team members were well informed. On the other hand, the frontline participants indicated instances where communication strategies were not perceived as effective.

“I wasn’t contacted by a manager from the unit or anything to be able to reassure, reassure me that things were being followed through and it should be okay, so that was tough.” (P10, RN ENDO) “It really seemed like there was no communication between—like staffing and the floor—we would get up to the floor and they would say, who are you? What are you doing here? What are we supposed to do with you?” (P20, RN OR)

Altruistic behaviors

The theme altruistic behaviors , encompasses the participants’ perception of their obligation and accountability to their patients and healthcare team, and their steadfastness in supporting the healthcare team even if it meant facing personal or professional repercussions. This readiness to aid the healthcare team and accept consequences showcased their altruism and commitment to the healthcare team. The team’s dedication to both their patients and each other was a primary focus driven by a strong sense of responsibility and obligation.

“I want to be able to look myself in the mirror and feel like I did the right thing—.” (P6, DIR) “My resiliency came from my coworkers. I wanted to come back to work to help them.” (P14, RN COVID ICU) “People really looked out for each other—and people were really kind and compassionate to each other—we all were in this together.” (P15, CRNA) “I’m grateful for the experience that I had and all of the different patients that I was able to help in my time there definitely solidified that being a nurse is what I needed to do—and why I chose the profession is exactly what I should have been doing.” (P19, RN ICU) “You just have to go with what seems right—.” (P22, MGR)

A defining characteristic of this theme was a willingness to endure consequences for the benefit of the healthcare team. These consequences varied from contracting the virus, facing criticism from the healthcare team, to foregoing financial incentives, and even job loss.

“I felt like I was punished for speaking up and I was punished for doing the right thing for patients.” (P6, DIR) “I mean, I literally broke the law so many times. Do you know how many times I started pressors [vasoactive drugs to increase blood pressure] on patients that I had no orders for [because a physician would not enter the ICU]?” (P14, CHG RN)

We identified five key themes based on the coded data; namely teamwork in a pressure cooker , healthcare team cohesion , applying past lessons to present challenges , knowledge gaps , and altruistic behaviors . The researchers propose that stressors arising from the COVID-19 pandemic had an impact on the healthcare team’s resilience. In addition, strong healthcare team cohesion, selfless behaviors among the healthcare team, shared knowledge, and job competence within the healthcare team, enhanced resilient performance.

The healthcare team experienced significant stress and uncertainty, due to the COVID-19 pandemic. This is consistent with previous research that has shown that the unprecedented nature of the pandemic led to challenging working conditions, limited resources, lack of information, and concerns about infecting loved ones [ 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 ]. The collective global impact of COVID-19 on healthcare systems is likely a contributing factor to these stressors [ 45 , 46 , 47 , 48 ].

Our study, along with those conducted by Anjara et al. (2021)[ 49 ] and Kaye-Kauderer et al. (2022) [ 50 ], found that solidarity and camaraderie among healthcare professionals improve resilience. Specifically, Anjara et al. observed increased collaboration among the healthcare professionals they studied in Ireland during the COVID-19 pandemic, while Kaye-Kauderer et al. identified team camaraderie among their sample of front-line healthcare workers from New York. Kinsella et al. (2023) [ 51 ] reported that COVID − 19 offered frontline workers in the UK the opportunity to work together toward a common goal. Potential explanations for these findings align with the concepts of social capital proposed by Coleman [ 52 ] and social identification with other as proposed by Drury [ 54 ]. Coleman suggests an individual’s skills and capabilities are enhanced through their interdependent relationships with others [ 52 ]. Drury found in communities affected by disasters, mutual aid and support emerged from a shared social identity, which serves to strengthen the community [ 53 ]. Brooks et al. (2021) [ 54 ] conducted a study with healthcare, police, and commercial sectors in England. They found it was important for these individuals to receive support from and provide support to their colleagues to mitigate the psychological impact of disaster exposure [ 54 ]. In addition, like our findings, Aufegger and colleague’s 2019 systematic review [ 55 ] found that social support in acute care healthcare teams creates a supportive atmosphere where team members help each other communicate problems, fulfill needs, and deal with stress.

Our results are consistent with those of Liu et al. (2020) [ 32 ] and Banerjee et al. (2021) [ 44 ] who each found that healthcare professionals frequently feel a sense of personal responsibility to overcome challenges. One potential explanation for this may be the influence of collectivism in their cultures. Similarly, our study suggests the sense of camaraderie among healthcare professionals may also contribute to a sense of responsibility and increased altruistic behavior. However, other studies have highlighted different perspectives on healthcare professionals’ sense of responsibility and duty. Godkin and Markwell’s (2003) [ 56 ] revealed that healthcare professionals’ sense of responsibility during the Severe Acute Respiratory Syndrome (SARS) outbreak was dependent on the protective measures and support offered by the healthcare system where most SARS infected patients were hospitalized. More recently, Gray et al. (2021) reported that nurses’ sense of responsibility stems from their ethical obligations, regardless of potential personal or familial risks [ 57 ].

The altruistic behaviors described by our participants helped maintain the performance of the healthcare team. It is too soon to see the long-term impact from working in this high-pressure environment; however, past research by Liu et al. (2012) [ 58 ] and Wu (2009) [ 59 ] demonstrated that “altruistic-risk acceptance” during the SARS outbreak was shown to decrease depressive symptoms among hospital employees in China.

Our research on resilience has important implications for healthcare organizations and professionals. In order to ready themselves for forthcoming events, healthcare systems must emphasize the significance of shared knowledge and its influence on the healthcare team’s ability to foresee and monitor effectively. This knowledge can help the healthcare organization function as a unified entity, rather than as individuals in separate roles or clusters within the organization to improve healthcare team preparedness. Establishing a cohesive, clinically competent healthcare team benefits the organization and the patients served. Measures to enhance social support, improve communication and ensure clinical competence maintain healthcare team resilience.

There are several limitations to consider when interpreting the results of this study. First, the sample was obtained using purposive snowball sampling, which may have introduced sampling bias and may not accurately represent the larger population of healthcare team members who worked during the COVID-19, as 95% of the sample were white. Second, our study did not have equal representation of all interprofessional team members. It is possible that a more heterogenous sample regarding role, race and gender may have introduced additional codes. Additionally, the PI (JA) worked as a Certified Registered Nurse Anesthesiologist (CRNA) in acute care during the pandemic and personal experience may have introduced confirmation bias. Also, the focus of our research was to fill a gap in the existing knowledge of what is known about healthcare team resilience in pandemic disasters, and help to answer if and how it intersects with individual and organizational resilience. It is possible this novel conceptualization of healthcare team as a cohesive singular conscious source of knowledge did not adequately address this.

Steps to ensure rigor and mitigate any potential shortcomings of qualitative data analysis were the maintenance of a reflexive journal, a willingness of the PI to let go of unsupported ideas and constant verification of codes and themes with the research mentor (MN) for coherence and consistency within the coded data, selected methodology and research questions.

Overall, the extracted themes of teamwork in a pressure cooker; healthcare team cohesion; applying past lessons to present challenges; knowledge gaps; and altruistic behaviors illustrate comparable experiences within the healthcare team. As healthcare professionals and organizations continue to navigate the challenges of the COVID-19 pandemic and other crises, our findings provide valuable insights into how team cohesion, along with altruistic behaviors, may enhance resilience capabilities to create and maintain a unified resilient healthcare team.

Data availability

The data for this study are confidential as required by the IRB approval. To protect the anonymity of the participants, the data are not publicly available. Additional information about the research method, Interview questions, informant data, and the study in general can be requested from the corresponding author, J.A.

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Acknowledgements

The authors want to thank all the interviewed healthcare team participants for their time and sharing their personal stories and for their continued service during the COVID-19 pandemic. We would also like to acknowledge Ayaba Logan, the Research and Education Informationist, Mohan Madisetti, the MUSC College of Nursing Director of Research, the staff of the MUSC Center for Academic Excellence and the reviewers of this journal for their constructive criticism.

This research (software, transcription services, etc.) was solely funded by the Principal Investigator, J.A.

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Conceptualization J.A., K.C., L.N., D.L., H.E., and M.N.; methodology J.A. and M.N.; J.A. led the study, recruited the interviewees, conducted interviews, led the data analysis, and drafted the manuscript. J.A., and M.N. conducted the data analyses; review and editing K.C., H.E., D.L., and M.N.; supervision M.N.; research project administration J.A. and M.N.; funding acquisition J.A. All authors reviewed the manuscript.

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Ambrose, J.W., Catchpole, K., Evans, H.L. et al. Healthcare team resilience during COVID-19: a qualitative study. BMC Health Serv Res 24 , 459 (2024). https://doi.org/10.1186/s12913-024-10895-3

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Qualitative analysis of mothers’ perception related to the delivery of information regarding preterm births

• Doriane Randriamboarison 1   na1 ,
• Elisa Fustec 2   na1 ,
• Isabelle Enderlé 2 , 3 ,
• Mathilde Yverneau 1 , 3 ,
• Karine Le Breton 1 , 2 ,
• Linda Lassel 2 ,
• Nadia Mazille-Orfanos 1 &
• Patrick Pladys 1 , 3  

BMC Pregnancy and Childbirth volume  24 , Article number:  272 ( 2024 ) Cite this article

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Preterm birth is a major health issue due to its potential outcomes and socioeconomic impact. Prenatal counseling is of major importance for parents because it is believed that the risk of preterm birth is associated with a higher parental mental burden. Nowadays in France, the content and delivery of antenatal counseling is based on personal experience since there is a lack of official guidelines. The goal of the study was to evaluate maternal perception of antenatal information delivered in the setting of preterm births.

A qualitative study was performed using semi-structured individual interviews of 15 mothers with a child born > 26–34 GW. Data analysis was based on a constant comparative method.

Concerning prenatal counseling content, parents wanted to be informed of their role in the care of their preterm child more so than statistics that were not always considered relevant. Parents’ reactions to the announcement of the risk of a preterm birth was dominated by stupefaction, uncertainty and anxiety. When it comes to the setting of prenatal counseling, patients’ room was deemed an appropriate setting by parents and ideally the presence of a coparent was appreciated as it increased patients’ understanding. The physicians’ attitude during the counseling was considered appropriate and described as empathic and optimistic. The importance of support throughout the hospitalization in the form of other parents’ experiences, healthcare professionals and the possibility to preemptively visit the NICU was emphasized by participants. Delivery experience was dominated by a sense of uncertainty, and urgency. Some leads for improvement included additional support of information such as virtual NICU visit; participants also insisted on continuity of care and the multidisciplinary aspect of counseling (obstetrician, neonatologist, midwife, nurse, lactation consultant and psychologist).

Highlighting parents’ expectations about prenatal counseling could lead to the establishment of overall general guidelines. However, some topics like the use of statistics and mentioning the risk of death underline the importance of a personalized information.

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Introduction

According to the latest French National Prenatal Survey (NPS), the rate of preterm birth was 7% in 2021, which represents about 46,000 newborns [ 1 ].This rate has remained stable since 2016. Most of preterm deliveries happen between 32 and 36 GW (5.3%), and1.7% occurbetween 22 and 31 GW [ 1 ].

Preterm birth has long term effects and even though survival without neuromotor or sensory disabilities has improved in the last decades from 45.5% in 1997 to 62% in 2011 [ 2 ], ex-preterm infants present more neurodevelopmental complications and motor disorders such as cerebral palsy, cognitive disabilities, school learning disabilities [ 3 , 4 ]. Considering all these outcomes and their socioeconomic impact,preterm birth represents a major health issue. Therefore, preventingpreterm labor and neonatal complications associated with a preterm birth is of utmost importance [ 2 ]. An integral part of high-risk pregnancy management is announcing to the parents that their pregnancy is no longer as they had envisioned it. It is the healthcare professional’s responsibility to make sure the patient understands all the information necessary to apprehend the medical course and to make informed decisions [ 5 ]. In this setting, communication in addition to bringing emotional support and conveying empathy also plays a legal role. This information is delivered during an antenatal consultation.

During the antenatal consultation, neonatologists focus on neonatal complications and how to manage them. This has been shown to be helpful for parents [ 6 ]. It contributes to psycho-social support, lowers risk of postpartum depression and mother-infant bonding disorder [ 7 ]. However, this new knowledge may also contribute to parents’ anxiety [ 8 ]. Parents’ needs and expectations regarding antenatal counseling are not always correctly understood by clinicians [ 9 , 10 ]. Furthermore, this information is often delivered in a stressful environment, where there is a concomitant concern for the mother’s health. Information concerning obstetrical outcomes must also be provided including causes of preterm birth, treatments, and prognosis. In this setting, delivery becomes an abrupt and unanticipated event which can generate an important amount of stress. High-risk pregnancies and emergency deliveries are more at risk to generate posttraumatic stress disorder than regular pregnancies (18.5% versus 4%) [ 11 ].Neonatal outcomes are deeply connected to the obstetrical path and perinatal collaboration between neonatal and maternal caregivers improves families’ experience in all aspects of preterm birth [ 12 ]. Therefore, the way in which information is delivered in the antenatal period has a major impact on the parents’ experience throughout their subsequent path.

Nowadays in France, the content and delivery of antenatal counseling is based on personal experience since there is a lack of official guidelines. Most studies evaluating antenatal counseling are focusing on extreme preterm birth [ 13 , 14 , 15 , 16 ]. However, even though preterm infants born after 26 GW are at lower risk of adverse outcomes, they represent an important population in terms of prognosis. Moreover, these studies essentially focus on parents’ role in deciding between active support and palliative care [ 17 ], overlooking all other aspects of prenatal information. Most research has also been conducted from a neonatological point of view without the obstetricians’ input.

The aim of this qualitative study is to evaluate maternal perception of antenatal information delivery in the setting of preterm birth between 26 and 34 GW. Our goal is to improve our practice by bringing some insights on how to best counsel patients at risk of preterm birth and help them understand complex information [ 18 ].

Study context

The neonatal and obstetric departments of the university hospital of Rennes offer prenatal counseling and maternal care to all patients at risk of preterm delivery. Information delivered is based on healthcare professionals’ experience. Concerning neonatal antenatal counseling, interviews are conducted by a senior neonatologist as soon as possible after patient’s hospital admission. If the situation evolves or if patient asks for an update, follow-up consultations may be conducted by the neonatal physician. The obstetric team (senior obstetricians and neonatologists, residents and midwives) informs patients on obstetrical care and prognostication. All information given is adjusted on clinical context and patient’s history.

A qualitative study was performed. We followed Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines [ 19 ]. Then we analyzed quantitative population’s characteristics.

Participants

Mothers with a child born between 26 and 34 gestation weeks admitted to the NICU at the tertiary care university hospital of Rennes from January 2019 to April 2020 and discharged from the hospital at the time of inclusion were selected. The time lag between birth and interview ranged from 6 months post-discharge to a maximum of 18 months, in order to minimize memory bias We included in our study mothers who had been hospitalized in the level 3 high risk pregnancy unit of the University hospital of Rennes and received prenatal counseling from a neonatal attending physician. Some patients had their first medical care at another hospital and then were transferred to the hospital of Rennes before birth. Transferred patients were also included. Our exclusion criteria were children born before 26 GW, deceased children, deceased mother, patients under 18 years old, patients who did not speak fluently French, patients with cognitive disabilities, patients without contact information, patients who gave birth in another hospital and patients whose child (or one of the children in case of multiple pregnancy) was still hospitalized at the time of the study.

Setting and sample

A physician was responsible for explaining the research project to potential participants and for sending an email newsletter describing the purpose and outline of the research. Mothers were invited to participate in a semi-structured interview. Participants responded to this invitation via email. Investigators who conducted the interviews informed participants, in the letter and then orally, about the aim of the study and their right to withdraw their participation at any time without giving any reason. Reminders were then sent via emails to the participants who did not respond to the letter. Patients who did not have an email address were recruited by phone calls made by one of the investigators. All mothers gave their informed consent before participating. We planned on stopping inclusion of patients when saturation was achieved (i.e. no new themes or ideas were generated by subsequent interviews).

Considering the difficulty for patients to come to the hospital for the interview, we initially let participants choose between a face-to-face interview or over the phone according to their convenience. In the face of the Sars-CoV-2 pandemic and its associated restrictions, all interviews were then conducted over the phone.

Data collection

Semi-structured interviews were conducted in French by one or both interviewers who were a neonatal resident (DR) and an obstetrician-gynecologist (OB/GYN) resident (EF). Data collection spanned from June 2020 to March 2021. Interviews were semi-structured, with a predefined list of open-ended questions focusing first on the information received concerning the hospitalization, treatments, and prenatal counseling, and then on desired improvements, and open suggestions. The interview guide was developed by authors (DR, EF, NM, IE and KL) after a review of the literature before starting the study. If applicable, face-to-face interviews were conducted at a private office space located in the NICU.

To ensure consistency, we used the same interview guide in every interview (Table  1 ). The interviewers received preliminary training on reformulation to carry out the in-depth interviews with qualitative method referents. They reported their involvement after each interview. Sessions were recorded with the consent of each participant and then transcribed verbatim and de-identified. The aims and rational for the research were disclosed to the participants in the newsletter. We confirmed patient’s understanding during the interview.

Throughout the session, the moderator summarized and reformulated the results and presented them back to the participants to ensure information was accurate and that their comments had been correctly understood. At the end of the session, participants completed a short quantitative questionnaire to obtain their socio-demographic characteristics. We obtained remaining socio-demographic data from the patient electronic medical record.

Data analysis

The analysis procedure was conducted byfour researchers (EF, DR, NM and IE) using an inductive approach to identify themes that emerged from the data. Each transcript was independently read several times to facilitate immersion in the data.The thematic analysis of the data promoted a logic of emergence. The interviews were first analyzed using a manual method of coding the themes and sub-themes. The researchers used open coding process to summarize participants’ views by assigning words to quotes or paragraphs. The coding of the researchers were then compared and in the event of any discrepancies or a disagreement, other physicians (MY, KL, LL and PP) adjudicated. This method enhances the validity of the assigned themes. We kept including participants in the study until saturation was achieved (i.e. no new themes or ideas were generated by subsequent interviews).

The list of themes and sub-themes was then generated and extracted in tabular form. Constant comparative analysis was used to assess overall saturation [ 20 ]. Authors selected verbatim quotes to illustrate the thematic findings. We coded data from transcripts using the Saldaña method [ 21 ] To ensure the reliability of the coding and analysis of the data, findings were discussed among the authors. At the same time we used the NVivo® 12 Plus software interface (QSR International) to support the coding tree. The software was also used to check the frequency of occurrence of themes and to ensure that our main themes were consistent. NVivo’s contribution was also to facilitate the link between the highlighted themes and the verbatim references.

Ethical considerations

The study was approved by the local Ethics Committee (reference number 20.61). Participation was on a voluntary basis. The university hospital of Rennes recorded the material in accordance with all French ethical regulations (ref: MR-003).

We conducted a total of 15 interviews, which took place between June 2020 and March 2021.We obtained data saturation after 12 interviews. Amongst the three first participants who were given the choice of the interview setting, two of them decided on a face-to-face interview, and the last one over the phone. For all remaining participants, we only conducted phone interviews.Average length of interviews is 44 min ± 11 min (minimum 25 min, maximum 66 min). Face to face interviews lasted 32 and 42 min each.

Participant’s characteristics are presented in Table  2 . On average, participating mothers were 31.4 years old (± 4.9 years). Newborns were on average 30.2 ± 2.5 weeks of gestation at birth.

Characteristics of prenatal counseling

Circumstances of prenatal counseling are reported in Table  3 . Interviews mostly took place in the patient’s hospital room, and within the first days after admission.

Thematic analysis

Seven themes were extracted from our data analysis. We subdivided each theme into sub-themes and illustrated some of them with participants’ quotes from the interview (presented in Table  4 ).

Prenatal counseling content.

Neonatal complications and care .

Information delivered during prenatal counseling was the most mentioned during the interviews. Participants recalled being told about neonatal complications. They talked about respiratory outcomes first, short and long term. Then neurological complications were evoked including specific follow-up and neurosensorial risks. Mothers also reported receiving information concerning the NICU: the rooms, the equipment, the incubator. They remembered being told about the usual medical course and the steps during hospitalization.

Parents’ role .

How participants should act with their preterm newborn is commonly addressed during antenatal consultation. Mentioning the baby’s future life makes parenthood more real. For instance, practical aspects such as transferring parents’ smell through comfort blankets and cuddly toys were greatly appreciated. Being able to spend unlimited time with their child was also reassuring. Breastfeeding is another important topic, especially knowing that it is feasible even in case of preterm delivery. This notion was carried by the obstetric team. Midwives adapted their support to patients’ need, no matter what they first wished. A participant explained that she changed her mind based on the information she received about the role of breast milk for preterm babies: ‘Midwives who listened, who taught me how to pump my milk even though I was totally reluctant to breastfeed’ (patient no 2).

Finally, participants mentioned skin to skin as a beneficial act to their child’s well-being. Mothers report highly on it, as shown by patient no 8’s quote: “they told me that I could stay close to her, that I was going to be able to touch her […] to hold her against me. When I was told that, I felt a lot better because I didn’t know I would have the opportunity to hold her.”

Use of statistics .

To participants, statistics and numbers were either not mentioned or considered irrelevant. Indeed, seven patients reported not receiving any and seven had no recall of any statistics. Only one patient was looking for statistical data in the prenatal counseling and insisted on receiving some. When asked if they wished they were given some, four participants were against, four would have appreciated it and seven had no opinion. The ones in favor explained they wanted to hear positive numbers such as survival rates. Some participants described themselves as wanting to know everything and be as informed as possible. Participants who did not wish to receive any statistics argued that it would have scared them, and made them worry about worst case scenario.

Risk of death .

Mortality of preterm children was not mentioned to every participant as four participants reported death not being talked about during antenatal counseling. Avoiding this subject was appreciated by some participants. One mentioned they felt like practitioners could sense which information was relevant to them. To other participants, not talking about death could lead parents to imagine the worst-case scenario.

Mothers’ feelings and reactions.

Announcement of a risk of preterm birth .

Participants often reported feeling paradoxically in good health while being diagnosed with a risk of preterm birth. Therefore, such a diagnosis was reported as being a shock. Another feeling commonly mentioned is fear for the child’s health. On the contrary, some participants felt optimistic.

Prenatal hospitalization experience .

When asked how their hospital stay went, participants reported as many positive aspects as negative ones. They generally appreciated the close medical attention and support which were reassuring. However, some of them also mentioned the difficulty to accept the fact that they needed to stay in the hospital. Feelings mentioned by order of frequency were stupefaction, uncertainty, hope and anxiety. The sudden change during their pregnancy brought disorientation to some participants. Another feeling described was not knowing exactly what would happen to them and when delivery would occur. Participants also mentioned developing some hope during their hospital stay, especially for participants who were hospitalized for the longest period of time. As time went by and nothing serious was happening, they found themselves hoping they would slowly escape preterm birth’s adverse outcomes. The whole experience of a risk of preterm birth generated anxiety for several participants. They continuously feared for their child’s life. Moreover, being hospitalized, away from their homes and relatives, could enhance this anxiety.

Circumstances of prenatal counseling.

Co-parent present .

Both parents being present during antenatal counseling was the most frequent situation. Having the other parent present allowed to reflect further on what had just been said. It kept the information alive and encouraged questions.

Organization of prenatal counseling .

All participants could describe how prenatal counseling went. Consultations happened in their hospital room, which participants found appropriate.

Counselor’s attitude .

Participants commented on the physician’s skills. Fourteen of them defined the neonatologist as optimistic, and showing empathy. They reported the physician using understandable language to them. According to participants, the counselor also personalized information according to the patient and the situation, as Patient no 1 mentioned: ‘I think they really understood [me] and told me what I needed to know without telling me too much.’

Support during prenatal hospitalization.

Close relatives seemed to be the most important emotional support throughout hospitalization. The other parent was the most mentioned, followed by first-degree family members, especially mothers and sisters, and for some participants, friends. Healthcare professionals were also referred as supportive. Midwives and assistant nurses were in the first line of patient’s care and mothers relied on them. The psychologist was also cited, bringing moral, psychological, and emotional support. Shared experience with other parents who went through a similar path were appreciated by participants. They mentioned feedback from relatives who had a preterm delivery, letters, and pictures from former parents of NICU’s babies, who are now doing well. One patient said she had the need to search the internet, even though it did not necessarily bring her comfort. The tour of the NICU was also appreciated by mothers and considered as a real source of support.

Delivery experience.

Participants described information on delivery as clear but mentioned the difficulty dealing with delivery’s unpredictability. They had questions on how far in their pregnancy they could possibly go, whether they were going to deliver vaginally or by cesarean, if they were going to be induced. Mothers also talked a lot about the urgency of delivery and reported a feeling of being rushed. The need for support in this difficult situation was important. The presence of the co-parent was requested by participants, although it may not always have been possible if delivery was impending. They counted on the midwives and the obstetric team to support them as well.

Additional sources of information.

The most mentioned source of information was the tour of the NICU, when the patient’s health allowed it, and delivery was not impending. Written documents were also presented to patients and appreciated. Most participants mentioned receiving paper documents, including one on breastfeeding and one explaining planned cesarean section. Some participants reported searching information on the internet.

Suggestions for improvement.

Additional support of information .

Participants suggested pictures and videos. A virtual tour of the NICU to show the rooms with their equipment was also mentioned. The expectation of what the photographs should describe was controversial. Pamphlets with pictures of staff members to help identify each professional’s face and tasks were suggested. Written documents about local neonatal units, from highly intensive care to current care, and how they connect to each other, would be appreciated as well. Explanations on milk collection centers (lactarium) were also requested as several participants did not have a complete understanding of their functioning.

Antenatal information .

Participants wanted the same practitioners to perform the consultation, as they sought continuity of care and commitment from healthcare professionals. Several participants also mentioned that the presence of a neonatal nurse during the neonatologist’s counseling would be beneficial. One participant suggested having the psychologist present to adjust psychological follow-up after the meeting. Sharing other parents’ experiences was also brought up. Participants wished they could have joined talk groups in the high pregnancy risks unit. Participant no 9 suggested to tell future parents confronted with a risk of preterm birth about the care of a preterm child: “And to tell them it’s a fight for the baby and it’s a fight for the parents.”

Postpartum care .

Several participants addressed postpartum mothers’ care. They expressed the need to be hospitalized in a unit without any newborn instead of the usual post-delivery maternity units, as it made the absence of their child harder to endure. Some of them even wished to be in the same room as their infant, included in the intensive care unit, such as Kangaroo Mother Care (KMC) units. Another commonly mentioned topic was breastfeeding: they wished for more help and support during the first steps of setting breastfeeding.

This study on the information related to preterm birth and its consequences, delivered during prenatal care, gives a thorough insight into the perception of mothers faced with the care of a preterm infant. The announcement of a risk ofpreterm birth came as a shock for patients, as there often was no forerunner. However, the information delivered byneonatologists was overall described as clear, adapted, and carried out with optimism and empathy. Concerning hospitalization in the high-risk pregnancy unit, participants emphasized the importance of having different sources of support to help them cope with anxiety and unpredictability. The feedback provided by participants to improve the delivery of information included the development of visual sources of information.

Providing information on a situation that cannot be predicted is a difficult task. Parents need to be aware that the ability to give an accurate prognosis before delivery remains limited [ 22 ]. Our study shows that some parents wish to have as much information as possible to be fully prepared, whereas others would like to only hear what is very necessary. Many studies on prenatal counseling have shown the importance of personalized information. Most of them focus on the field of extreme prematurity. However, Gaucher et al. demonstrated, in a preliminary qualitative study of 5 interviews [ 23 ], results comparable to our own on the content of patients’ expectations during this antenatal interview. This initial study was followed by a quantitative study [ 24 ] designed to verify their results on a larger scale using a quantitative method. This is one of the few studies which has focused on the maternal experience beyond extreme prematurity, but with a quantitative approach. Healthcare professionals must try to identify parents’ expectations and adapt their speech accordingly [ 18 ]. Culture and social background should also be taken into consideration, as well as level of understanding [ 25 ]. Personalization is probably the most important aspect and should be applied to all parts of antenatal care [ 26 , 27 ](. We also found these results in our study, but our qualitative approach, which is relevant for assessing mothers’ experiences, provided additional data on the way in which parents wish to receive this information. Learning how to identify parents’ wishes should be a part of residents’ training as it is not an easy task. Moreover, delivering unwanted information can create the wrong environment and hinder the parents and healthcare providers relationship [ 13 , 14 ]. Misunderstanding can generate miscommunication and dissatisfaction which can lead to suboptimal care [ 18 ]. What practicians think parents understood may not reflect what parents actually report being told [ 22 ].

In our findings, the wish for statistics and figures varies from one participant to another. Physicians may be confronted with the question of whether or not to share them. A study showed that some mothers, especially those with a high education level appreciated exact statistics more than general facts [ 6 ]. It brings us back to the idea of personalizing our counsel. Geurtzen et al. showed that parents’ choice on statistics was divided, and if given, these should be well explained [ 26 ]. However, a systematic review on parent communication needs during antenatal consultations found that parents wished for more than only quantitative data concerning mortality and morbidity. For instance, they expect information on their role [ 14 ]. So before giving statistical data, physicians should seek if parents want them and provide them in a way that is understandable and relevant to this individual situation.

In our study, physician’s skills and attitude are well remembered by mothers, suggesting the idea that if parents feel in a safe and trusting environment, they will be more willing to listen, understand and ask questions. Other studies found that in order to improve pedagogy, the speaker should be compassionate, empathic, honest, and caring [ 10 ]. Nevertheless, parents also expect truth and real outcomes and importantly, in words they can understand [ 14 ]. Our study shows that participants had a positive experience with well conducted antenatal counseling, even though the risk of neonatal death was brought up by the physician. As pointed in previous research work, truthful information, even when difficult, can be expected from physicians regarding prenatal information. Some hope should also be provided, however some physicians may fear giving false hope [ 16 ]. The timing of the information delivery is another aspect of prenatal counseling that also needs to be personalized. Too soon can be stressful if the patient is still accommodating to their new situation [ 18 ]. On the contrary, too late may increase mother’s stress. Uncertainty of the prognosis and the possible threat of sudden emergency delivery add difficulty to the timing of antenatal counseling.

Several participants from our study brought up the positive impact of a nurse being present during counseling, which illustrates the importance of multidisciplinarity. Indeed, it has been shown that nurses can rephrase and check parents’ understanding [ 14 ]. Moreover, in the Netherlands, guidelines mention antenatal counseling should be performed with both an obstetrician and aneonatologist [ 15 ]. An American study supports the idea that optimal communication between the obstetric and neonatal teams improves outcomes and safety during the peripartum period [ 28 ]. When combined with an obstetric expertise, neonatal information can be more accurate and adapted to the degree of emergency. .

The use of multiple means of information delivery was supported by our participants including written, oral and visual. A study on the use of a decision aid in antenatal counseling showed that written information was often too complicated and understanding relied on parents’ educational level. Consequently, written information should be completed by oral explanations from a professional [ 18 ]. This has proven its efficacy in the obstetric field [ 25 ]. Such documents should be preferably personalized and adjusted to parents’ needs [ 26 ]. A visual support can decrease mothers’ anxiety [ 7 ]. Indeed, the time between antenatal counseling and the actual day of delivery can be long and mothers’ memory of the information delivered may fade. Visual aid can help parents remember information, even more so in a stressful environment [ 29 ]. A. D. Muthusamy et al. [ 30 ] found that submission of the medium before or while the information is being delivered improved recall of the information and decreased anxiety. However, providing this support after the information has been delivered is not very effective. Written information may not improve factual recall after verbal counseling of mothers in preterm labor [ 31 ]. Concerning the support of written information, Nicole M Rau and al provided that a paper handout and multimedia tablet were equally effective in the labor unit to supplement verbal preterm birth counseling and decrease parental anxiety [ 32 ]. This approach could be used in the setting of antenatal counseling. Alongside official documents provided by the hospital, the use of the Internet as a means of information has become increasingly important for pregnant women over the years [ 28 ]. In our study, the internet was depicted as negative because mothers mostly reported on their “worst case scenario” findings. However, other research show that even though internet findings may generate anxiety, they can also reassure mothers-to-be and be a rich and accessible source of support [ 33 ].

Strengths and limitations

Our study is novel as it explores the obstetric side, and the research team was multidisciplinary, including neonatologists, obstetricians, and a psychologist. Moreover, the fact that we did not focus on periviable terms enabled us to study several aspects of prenatal counseling other than decision-making. Even though our interviews were conducted over the phone for the most part due to the sanitary conditions, the interview durations were satisfactory which shows participants’ trust towards researchers. Furthermore, we included patients who gave birth at least 6 months before the interview, and whose child was discharged which gave participants time to process what happened, allowing them to tell their experience. Another asset of this study is that it reflects real world experience and not a simulation like many previous studies [ 34 ].

One of the limitations of our study is that our results are impacted by some mothers’ characteristics: our participants mostly had preeclampsia. In consequence, we cannot generalize our results to all high-risk pregnancy hospitalizations, in particular spontaneous preterm labor. However, preeclampsia causes longer hospital stays and thus allows deeper insights on the hospital experience. Patients who present with spontaneous preterm labor sometimes don’t have time to receive antenatal counseling before delivery. Other biases to consider are gestational age at admission and delivery, and pathology of the newborns, as they may have influenced participants’ experiences. We also did not include mothers who had lost their child. They probably have a very different insight that is important to consider. This stems from the fact that we decided to not include very extreme preterm children, therefore mortality was less important in our population. In order to explore mothers’ point of view after the loss of their child, the research team would have to be well prepared to deal with grief and bring emotional support during the study. Another population that was not included was mothers who had gotten prenatal counseling but ended up delivering at full term. We did not explore the impact of such information on preterm birth and the stress generated on those patients. Fish et al. showed that prenatal counseling improved parental knowledge and satisfaction without increasing anxiety [ 35 ]. Finally, in this study we focused on mothers’ experiences. It would be interesting to compare them with the coparents’ point of views, as there could be differences in psychosocial perceptions between them.

To improve the delivery of information related to preterm births, several leads could be explored. Using simulation to personalize the information in prenatal counseling remains interesting and has been widely described in the literature, but an evaluation of the clinical implementation after this simulation training is essential. Furthermore, multidisciplinarity could be developed by training different specialists to perform prenatal counseling. Written documents and videos may be elaborated to improve patients’ understanding.

The risk of preterm birth is a complex situation and all involved healthcare professionals should reflect on the best way to inform and support patients. Providing some general guidelines on how to respond to mothers’ expectations could be relevant, however personalization is the most fundamental aspect to keep in mind when delivering information on preterm birth. Hence the skills associated with information delivery in preterm births could benefit from the development and improvement of tools like: healthcare professionals’ training, interview guide for physicians that integrates parents’ expectations, and multidisciplinary counseling including all actors involved in the care of the mother and the child.

Data availability

All authors had full access to the data and materials. Data is available from Nadia Mazille-Orfanos ([email protected]) upon reasonable request.

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Doriane Randriamboarison, Elisa Fustec Contributed equally.

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Department of Neonatology, University Hospital of Rennes, Rennes, 35000, France

Doriane Randriamboarison, Mathilde Yverneau, Karine Le Breton, Nadia Mazille-Orfanos & Patrick Pladys

Department of Obstetrics and Gynecology, University Hospital of Rennes, Rennes, 35000, France

Elisa Fustec, Isabelle Enderlé, Karine Le Breton & Linda Lassel

Faculty of Medicine Rennes 1 University, Rennes, France

Isabelle Enderlé, Mathilde Yverneau & Patrick Pladys

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DR, EF, IE, KL, NM participated in the study design, collection and analysis of the data and the writing of the report. NM, IE and MY participated in the study design, trained the interviewers, guaranteed the expertise of the qualitative method and participated in the analysis of the data through N Vivo software. LL and PP participated in study design, data collection, writing and the interpretation of the data. DR and EF participated in organisation of the interviews and collection of the data. All authors revised this article critically, approved the final manuscript and agreed to its being submitted for publication. DR, EF, IE, KL, MY, LL, NM, and PP had complete access to the study data that support the publication.

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Correspondence to Nadia Mazille-Orfanos .

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The study was reviewed and approved by the Rennes University Hospital Ethics Committee (reference number 20.61). The University Hospital of Rennes recorded the material in accordance with all French ethical regulations (ref: MR-003). All methods were carried out in accordance with relevant guidelines and regulations. Participation was on a voluntary basis. All participants provided written informed consent to participate in this study.

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Randriamboarison, D., Fustec, E., Enderlé, I. et al. Qualitative analysis of mothers’ perception related to the delivery of information regarding preterm births. BMC Pregnancy Childbirth 24 , 272 (2024). https://doi.org/10.1186/s12884-024-06404-3

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DOI : https://doi.org/10.1186/s12884-024-06404-3

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