conducting qualitative research in mental health thematic and content analysis

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• Volume 13, Issue 2
• Qualitative Research Methods in Mental Health
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• Sarah Peters
• Correspondence to : Dr Sarah Peters, School of Psychological Sciences, The University of Manchester, Coupland Building 1, Oxford Road M13 9PL, UK; sarah.peters{at}manchester.ac.uk

As the evidence base for the study of mental health problems develops, there is a need for increasingly rigorous and systematic research methodologies. Complex questions require complex methodological approaches. Recognising this, the MRC guidelines for developing and testing complex interventions place qualitative methods as integral to each stage of intervention development and implementation. However, mental health research has lagged behind many other healthcare specialities in using qualitative methods within its evidence base. Rigour in qualitative research raises many similar issues to quantitative research and also some additional challenges. This article examines the role of qualitative methods within mental heath research, describes key methodological and analytical approaches and offers guidance on how to differentiate between poor and good quality qualitative research.

https://doi.org/10.1136/ebmh.13.2.35

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The trajectory of qualitative methods in mental health research

Qualitative methodologies have a clear home within the study of mental health research. Early and, arguably, seminal work into the study of mental illnesses and their management was based on detailed observation, moving towards theory using inductive reasoning. Case studies have been long established in psychiatry to present detailed analysis of unusual cases or novel treatments. Participant observation was the principle method used in Goffman's seminal study of psychiatric patients in asylums that informed his ideas about the institutionalising and medicalising of mental illness by medical practice. 1 However, the 20th century saw the ‘behaviourist revolution’, a movement where quantification and experimentation dominated. Researchers sought to identify cause and effects, and reasoning became more deductive – seeking to use data to confirm theory. The study of health and illness was determined by contemporary thinking about disease, taking a biomedical stance. Psychologists and clinical health researchers exploited natural science methodologies, attempting to measure phenomenon in their smallest entities and do so as objectively as possible. This reductionist and positivist philosophy shaped advances in research methods and meant that qualitative exploration failed to develop as a credible scientific approach. Indeed, ‘objectivity’ and the ‘discovery of truth’ have become synonymous with ‘scientific enquiry’ and qualitative methods are easily dismissed as ‘anecdotal’. The underlying epistemology of this approach chimes well with medical practice for which training is predominately in laboratory and basic sciences (such as physics and chemistry) within which the discourse of natural laws dominate. To this end, research in psychiatry still remains overwhelmingly quantitative. 2

Underlying all research paradigms are assumptions. However, most traditional researchers remain unaware of these until they start to use alternative paradigms. Key assumptions of quantitative research are that facts exist that can be quantified and measured and that these should be examined, as far as possible, objectively, partialling out or controlling for the context within which they exist. There are research questions within mental health where this approach can hold: where phenomenon of interest can be reliably and meaningfully quantified and measured, it is feasible to use data to test predictions and examine change. However, for many questions these assumptions prove unsatisfying. It is often not possible or desirable to try and create laboratory conditions for the research; indeed it would be ecologically invalid to do so. For example, to understand the experience of an individual who has been newly diagnosed with schizophrenia, it is clearly important to consider the context within which they live, their family, social grouping and media messages they are exposed to. Table 1 depicts the key differences between the two methodological approaches and core underlying assumptions for each.

• View inline

Comparison of underlying assumptions of quantitative and qualitative research approaches

It should be cautioned that it is easy to fall into the trap of categorising studies as either quantitative or qualitative. The two traditions are often positioned within the literature as opposing and in conflict. This division is unhelpful and likely to impede methodological advancement. Though, undeniably, there are differences in the two approaches to research, there are also many exceptions that expose this dichotomy to be simplistic: some qualitative studies seek to test a priori hypotheses, and some quantitative studies are atheoretical and exploratory. 3 Hence it is more useful to consider research methodologies as lying along a spectrum and that researchers should be familiar with the full range of methodologies, so that a method is chosen according to the research question rather than the researcher's ability.

Rationale for qualitative methods in current mental health research

There are a number of scientific, practical and ethical reasons why mental health is an area that can particularly benefit from qualitative enquiry. Mental health research is complex. Health problems are multifactorial in their aetiology and the consequences they have on the individual, families and societies. Management can involve self-help, pharmacological, educative, social and psychotherapeutic approaches. Services involved are often multidisciplinary and require liaison between a number of individuals including professionals, service-users and relatives. Many problems are exacerbated by poor treatment compliance and lack of access to, or engagement with, appropriate services. 4

Engagement with mental health research can also be challenging. Topics may be highly sensitive or private. Individuals may have impaired capacity or be at high risk. During the research process there may be revelations of suicidal ideation or criminal activity. Hence mental health research can raise additional ethical issues. In other cases scepticism of services makes for reluctant research participants. However, if we accept the case that meaningful research can be based in subjective enquiry then qualitative methods provide a way of giving voice to participants. Qualitative methods offer an effective way of involving service-users in developing interventions for mental health problems 5 ensuring that the questions asked are meaningful to individuals. This may be particularly beneficial if participants are stakeholders, for example potential users of a new service.

Qualitative methods are valuable for individuals who have limited literacy skills who struggle with pencil and paper measures. For example qualitative research has proved fruitful in understanding children's concepts of mental illness and associated services. 6

How qualitative enquiry is used within mental health research

There are a range of types of research question where qualitative methods prove useful – from the development and testing of theory, to the piloting and establishing efficacy of treatment approaches, to understanding issues around translation and implementation into routine practice. Each is discussed in turn.

Development and testing of theory

Qualitative methods are important in exploratory work and in generating understanding of a phenomenon, stimulating new ideas or building new theory. For example, stigma is a concept that is recognised as a barrier to accessing services and also an added burden to mental health. A focus-group study sought to understand the meaning of stigma from the perspectives of individuals with schizophrenia, their relatives and health professionals. 7 From this they developed a four-dimensional theory which has subsequently informed interventions to reduce stigma and discrimination that target not only engagement with psychiatric services but also interactions with the public and work. 7

Development of tools and measures

Qualitative methods access personal accounts, capturing how individuals talk about a lived experience. This can be invaluable for designing new research tools. For example, Mavaddat and colleagues used focus groups with 56 patients with severe or common mental health problems to explore their experiences of primary care management. 8 Nine focus groups were conducted and analysis identified key themes. From these, items were generated to form a Patient Experience Questionnaire, of which the psychometric properties were subsequently examined quantitatively in a larger sample. Not only can dimensions be identified, the rich qualitative data provide terminology that is meaningful to service users that can then be incorporated into question items.

Development and testing of interventions

As we have seen, qualitative methods can inform the development of new interventions. The gold-standard methodology for investigating treatment effectiveness is the randomised controlled trial (RCT), with the principle output being an effect size or demonstration that the primary outcome was significantly improved for participants in the intervention arm compared with those in the control/comparison arm. Nevertheless, what will be familiar for researchers and clinicians involved in trials is that immense research and clinical learning arises from these substantial, often lengthy and expensive research endeavours. Qualitative methods provide a means to empirically capture these lessons, whether they are about recruitment, therapy training/supervision, treatment delivery or content. These data are essential to improve the feasibility and acceptability of further trials and developing the intervention. Conducting qualitative work prior to embarking on an RCT can inform the design, delivery and recruitment, as well as engage relevant stakeholders early in the process; all of these can prevent costly errors. Qualitative research can also be used during a trial to identify reasons for poor recruitment: in one RCT, implementing findings from this type of investigation led to an increased randomisation rate from 40% to 70%. 9

Nesting qualitative research within a trial can be viewed as taking out an insurance policy as data are generated which can later help explain negative or surprising findings. A recent trial of reattribution training for GPs to manage medically unexplained symptoms demonstrated substantial improvements in GP consultation behaviour. 10 However, effects on clinical outcomes were counterintuitive. A series of nested qualitative studies helped shed light as to why this was the case: patients' illness models were complex, and they resisted engaging with GPs (who they perceived as having more simplistic and dualistic understanding) because they were anxious it would lead to non-identification or misdiagnosis of any potential future disease 11 , an issue that can be addressed in future interventions. Even if the insights are unsurprising to those involved in the research, the data collected have been generated systematically and can be subjected to peer review and disseminated. For this reason, there is an increasing expectation from funding bodies that qualitative methodologies are integral to psychosocial intervention research.

Translation and implementation into clinical practice

Trials provide limited information about how treatments can be implemented into clinical practice or applied to another context. Psychological interventions are more effective when delivered within trial settings by experts involved in their development than when they are delivered within clinical settings. 12 Qualitative methods can help us understand how to implement research findings into routine practice. 13

Understanding what stakeholders value about a service and what barriers exist to its uptake is another evidence base to inform clinicians' practice. Relapse prevention is an effective psychoeducation approach that helps individuals with bipolar disorder extend time to relapse. Qualitative methodologies identified which aspects of the intervention service-users and care-coordinators value, and hence, are likely to utilise in routine care. 14 The intervention facilitated better understanding of bipolar disorder (by both parties), demonstrating, in turn, a rationale for medication. Patients discovered new, empowering and less socially isolated ways of managing their symptoms, which had important impacts on interactions with healthcare staff and family members. Furthermore, care-coordinators' reported how they used elements of the intervention when working with clients with other diagnoses. The research also provided insights as to where difficulties may occur when implementing a particular intervention into routine care. For example, for care-coordinators this proved a novel way of working with clients that was more emotionally demanding, thus highlighting the need for supervision and managerial support. 14

Beginners guide to qualitative approaches: one size doesn't fit all

Just as there is a range of quantitative research designs and statistical analyses to choose from, so there are many types of qualitative methods. Choosing a method can be daunting to an inexperienced or beginner-level qualitative researcher, for it requires engaging with new terms and ways of thinking about knowledge. The following summary sets out analytic and data-generation approaches that are used commonly in mental health research. It is not intended to be comprehensive and is provided only as a point of access/familiarisation to researchers less familiar with the literature.

Data generation

Qualitative data are generated in several ways. Most commonly, researchers seek a sample and conduct a series of individual in-depth interviews, seeking participants' views on topics of interest. Typically these last upwards of 45 min and are organised on the basis of a schedule of topics identified from the literature or pilot work. This does not act as a questionnaire, however; rather, it acts as a flexible framework for exploring areas of interest. The researcher combines open questions to elicit free responses, with focused questions for probing and prompting participants to provide effective responses. Usually interviews are audio-recorded and transcribed verbatim for subsequent analysis.

As interviews are held in privately, and on one-to-one basis, they provide scope to develop a trusting relationship so that participants are comfortable disclosing socially undesirable views. For example, in a study of practice nurses views of chronic fatigue syndrome, some nurses described patients as lazy or illegitimate – a view that challenges the stereotype of a nursing professional as a sympathetic and caring person. 15 This gives important information about the education and supervision required to enable or train general nurses to ensure that they are capable of delivering psychological interventions for these types of problems.

Alternatively, groups of participants are brought together for a focus group, which usually lasts for 2 hours. Although it is tempting to consider focus groups as an efficient way of acquiring data from several participants simultaneously, there are disadvantages. They are difficult to organise for geographically dispersed or busy participants, and there are compromises to confidentiality, particularly within ‘captive’ populations (eg, within an organisation individuals may be unwilling to criticise). Group dynamics must be considered; the presence of a dominant or self-professed expert can inhibit the group and, therefore, prevent useful data generation. When the subject mater is sensitive, individuals may be unwilling to discuss experiences in a group, although it often promotes a shared experience that can be empowering. Most of these problems are avoided by careful planning of the group composition and ensuring the group is conducted by a highly skilled facilitator. Lester and colleagues 16 used focus-group sessions with patients and health professionals to understand the experience of dealing with serious mental illness. Though initially participants were observed via focus-group sessions that used patient-only and health professional only groups, subsequently on combined focus groups were used that contained both patients and health professionals. 16 The primary advantage of focus groups is that they enable generation of data about how individuals discuss and interact about a phenomenon; thus, a well-conducted focus group can be an extremely rich source of data.

A different type of data are naturally occurring dialogue and behaviours. These may be recorded through observation and detailed field notes (see ethnography in Table 2 ) or analysed from audio/ video-recordings. Other data sources include texts, for example, diaries, clinical notes, Internet blogs and so on. Qualitative data can even be generated through postal surveys. We thematically analysed responses to an open-ended question set within a survey about medical educators' views of behavioural and social sciences (BSS). 17 From this, key barriers to integrating BSS within medical training were identified, which included an entrenched biomedical mindset. The themes were analysed in relation to existing literature and revealed that despite radical changes in medical training, the power of the hidden curriculum persists. 17

Key features of a range of analytical approaches used within mental health research

Analysing qualitative data

Researchers bring a wide range of analytical approaches to the data. A comprehensive and detailed discussion of the philosophy underlying different methods is beyond the scope of this paper; however, a summary of the key analytical approaches used in mental health research are provided in Table 2 . An illustrative example is provided for each approach to offer some insight into the commonalities and differences between methodologies. The procedure for analysis for all methods involves successive stages of data familiarisation/immersion, followed by seeking and reviewing patterns within the data, which may then be defined and categorized as specific themes. Researchers move back and forth between data generation and analysis, confirming or disconfirming emerging ideas. The relationship of the analysis to theory-testing or theory-building depends on the methodology used.

Some approaches are more common in healthcare than others. Interpretative phenomenological (lPA) analysis and thematic analysis have proved particularly popular. In contrast, ethnographic research requires a high level of researcher investment and reflexivity and can prove challenging for NHS ethic committees. Consequently, it remains under used in healthcare research.

Recruitment and sampling

Quantitative research is interested in identifying the typical, or average. By contrast, qualitative research aims to discover and examine the breadth of views held within a community. This includes extreme or deviant views and views that are absent. Consequently, qualitative researchers do not necessarily (though in some circumstances they may) seek to identify a representative sample. Instead, the aim may be to sample across the range of views. Hence, qualitative research can comment on what views exist and what this means, but it is not possible to infer the proportions of people from the wider population that hold a particular view.

However, sampling for a qualitative study is not any less systematic or considered. In a quantitative study one would take a statistical approach to sampling, for example, selecting a random sample or recruiting consecutive referrals, or every 10th out-patient attendee. Qualitative studies, instead, often elect to use theoretical means to identify a sample. This is often purposive; that is, the researcher uses theoretical principles to choose the attributes of included participants. Healey and colleagues conducted a study to understand the reasons for individuals with bipolar disorder misusing substances. 18 They sought to include participants who were current users of each substance group, and the recruitment strategy evolved to actively target specific cases.

Qualitative studies typically use far smaller samples than quantitative studies. The number varies depending on the richness of the data yielded and the type of analytic approach that can range from a single case to more than 100 participants. As with all research, it is unethical to recruit more participants than needed to address the question at hand; a qualitative sample should be sufficient for thematic saturation to be achieved from the data.

Ensuring that findings are valid and generalisable

A common question from individuals new to qualitative research is how can findings from a study of few participants be generalised to the wider population? In some circumstances, findings from an individual study (quantitative or qualitative) may have limited generalisability; therefore, more studies may need to be conducted, in order to build local knowledge that can then be tested or explored across similar groups. 4 However, all qualitative studies should create new insights that have theoretical or clinical relevance which enables the study to extend understanding beyond the individual participants and to the wider population. In some cases, this can lead to generation of new theory (see grounded theory in Table 2 ).

Reliability and validity are two important ways of ascertaining rigor in quantitative research. Qualitative research seeks to understand individual construction and, by definition, is subjective. It is unlikely, therefore, that a study could ever be repeated with exactly the same circumstances. Instead, qualitative research is concerned with the question of whether the findings are trustworthy; that is, if the same circumstances were to prevail, would the same conclusions would be drawn?

There are a number of ways to maximise trustworthiness. One is triangulation, of which there are three subtypes. Data triangulation involves using data from several sources (eg, interviews, documentation, observation). A research team may include members from different backgrounds (eg, psychology, psychiatry, sociology), enabling a range of perspectives to be used within the discussion and interpretation of the data. This is termed researcher triangulation . The final subtype, theoretical triangulation, requires using more than one theory to examine the research question. Another technique to establish the trustworthiness of the findings is to use respondent validation. Here, the final or interim analysis is presented to members of the population of interest to ascertain whether interpretations made are valid.

An important aspect of all qualitative studies is researcher reflexivity. Here researchers consider their role and how their experience and knowledge might influence the generation, analysis and interpretation of the data. As with all well-conducted research, a clear record of progress should be kept – to enable scrutiny of recruitment, data generation and development of analysis. However, transparency is particularly important in qualitative research as the concepts and views evolve and are refined during the process.

Judging quality in qualitative research

Within all fields of research there are better and worse ways of conducting a study, and range of quality in mental health qualitative research is variable. Many of the principles for judging quality in qualitative research are the same for judging quality in any other type of research. However, several guidelines have been developed to help readers, reviewers and editors who lack methodological expertise to feel more confident in appraising qualitative studies. Guidelines are a prerequisite for the relatively recent advance of methodologies for systematic reviewing of qualitative literature (see meta-synthesis in Table 2 ). Box 1 provides some key questions that should be considered while studying a qualitative report.

Box 1 Guidelines for authors and reviewers of qualitative research (adapted from Malterud 35 )

▶ Is the research question relevant and clearly stated?

Reflexivity

▶ Are the researcher's motives and background presented?

Method, sampling and data collection

▶ Is a qualitative method appropriate and justified?

▶ Is the sampling strategy clearly described and justified?

▶ Is the method for data generation fully described

▶ Are the characteristics of the sample sufficiently described?

Theoretical framework

▶ Was a theoretical framework used and stated?

▶ Are the principles and procedures for data organisation and analysis described and justified?

▶ Are strategies used to test the trustworthiness of the findings?

▶ Are the findings relevant to the aim of the study?

▶ Are data (e.g. quotes) used to support and enrich the findings?

▶ Are the conclusions directly linked to the study? Are you convinced?

▶ Do the findings have clinical or theoretical value?

▶ Are findings compared to appropriate theoretical and empirical literature?

▶ Are questions about the internal and external validity and reflexivity discussed?

▶ Are shortcomings of the design, and the implications these have on findings, examined?

▶ Are clinical/theoretical implications of the findings made?

Presentation

▶ Is the report understandable and clearly contextualised?

▶ Is it possible to distinguish between the voices of informants and researchers?

▶ Are sources from the field used and appropriately referenced?

Conclusions and future directions

Qualitative research has enormous potential within the field of mental health research, yet researchers are only beginning to exploit the range of methods they use at each stage of enquiry. Strengths of qualitative research primarily lie in developing theory and increasing understanding about effective implementation of treatments and how best to support clinicians and service users in managing mental health problems. An important development in the field is how to integrate methodological approaches to address questions. This raises a number of challenges, such as how to integrate textual and numerical data and how to reconcile different epistemologies. A distinction can be made between mixed- method design (eg, quantitative and qualitative data are gathered and findings combined within a single or series of studies) and mixed- model study, a pragmatist approach, whereby aspects of qualitative and quantitative research are combined at different stages during a research process. 19 Qualitative research is still often viewed as only a support function or as secondary to quantitative research; however, this situation is likely to evolve as more researchers gain a broader skill set.

Though it is undeniable that there has been a marked increase in the volume and quality of qualitative research published within the past two decades, mental health research has been surprisingly slow to develop, compared to other disciplines e.g. general practice and nursing, with relatively fewer qualitative research findings reaching mainstream psychiatric journals. 2 This does not appear to reflect overall editorial policy; however, it may be partly due to the lack of confidence on the part of editors and reviewers while identifying rigorous qualitative research data for further publication. 20 However, the skilled researcher should no longer find him or herself forced into a position of defending a single-methodology camp (quantitative vs qualitative), but should be equipped with the necessary methodological and analytical skills to study and interpret data and to appraise and interpret others' findings from a full range of methodological techniques.

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• ↵ MRC Developing and Evaluating Complex Interventions 2008
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• Quintana SM
• Schulze B ,
• Angermeyer MC
• Mavaddat N ,
• Lester HE ,
• Donovan J ,
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A worked example of Braun and Clarke’s approach to reflexive thematic analysis

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• Published: 26 June 2021
• Volume 56 , pages 1391–1412, ( 2022 )

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Since the publication of their inaugural paper on the topic in 2006, Braun and Clarke’s approach has arguably become one of the most thoroughly delineated methods of conducting thematic analysis (TA). However, confusion persists as to how to implement this specific approach to TA appropriately. The authors themselves have identified that many researchers who purport to adhere to this approach—and who reference their work as such—fail to adhere fully to the principles of ‘reflexive thematic analysis’ (RTA). Over the course of numerous publications, Braun and Clarke have elaborated significantly upon the constitution of RTA and attempted to clarify numerous misconceptions that they have found in the literature. This paper will offer a worked example of Braun and Clarke’s contemporary approach to reflexive thematic analysis with the aim of helping to dispel some of the confusion regarding the position of RTA among the numerous existing typologies of TA. While the data used in the worked example has been garnered from health and wellbeing education research and was examined to ascertain educators’ attitudes regarding such, the example offered of how to implement the RTA would be easily transferable to many other contexts and research topics.

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1 Introduction

Although the lineage of thematic analysis (TA) can be traced back as far as the early twentieth century (Joffe 2012 ), it has up until recently been a relatively poorly demarcated and poorly understood method of qualitative analysis. Much of the credit for the recent enlightenment and subsequent increase in interest in TA can arguably be afforded to Braun and Clarke’s ( 2006 ) inaugural publication on the topic of thematic analysis in the field of psychology. These authors have since published several articles and book chapters, as well as their own book, all of which make considerable contributions to further delineating their approach to TA (see, for example, Braun and Clarke 2012 , 2013 , 2014 , 2019 , 2020 ; Braun et al. 2016 ; Terry et al. 2017 ). However, on numerous occasions Braun and Clarke have identified a tendency for scholars to cite their 2006 article, but fail to fully adhere to their contemporary approach to RTA (see Braun and Clarke 2013 , 2019 , 2020 ). Commendably, they have acknowledged that their 2006 paper left several aspect of their approach incompletely defined and open to interpretation. Indeed, the term ‘reflexive thematic analysis’ only recently came about in response to these misconceptions (Braun and Clarke 2019 ). Much of their subsequent body of literature in this area addresses these issues and attempts to correct some of the misconceptions in the wider literature regarding their approach. Braun and Clarke have repeatedly iterated that researchers who chose to adopt their approach should interrogate their relevant publications beyond their 2006 article and adhere to their contemporary approach (Braun and Clarke 2019 , 2020 ). The purpose of this paper is to contribute to dispelling some of the confusion and misconceptions regarding Braun and Clarke’s approach by providing a worked example of their contemporary approach to reflexive thematic analysis. The worked example will be presented in relation to the author’s own research, which examined the attitudes of post-primary educators’ regarding the promotion of student wellbeing. This paper is intended to be a supplementary resource for any prospective proponents of RTA, but may be of particular interest to scholars conducting attitudinal studies in an educational context. While this paper is aimed at all scholars regardless of research experience, it may be most useful to research students and their supervisors. Ultimately, the provided example of how to implement the six-phase analysis is easily transferable to many contexts and research topics.

2 What is reflexive thematic analysis?

Reflexive thematic analysis is an easily accessible and theoretically flexible interpretative approach to qualitative data analysis that facilitates the identification and analysis of patterns or themes in a given data set (Braun and Clarke 2012 ). RTA sits among a number of varied approaches to conducting thematic analysis. Braun and Clarke have noted that very often, researchers who purport to have adopted RTA have failed to fully delineate their implementation of RTA, of have confused RTA with other approaches to thematic analysis. The over-riding tendency in this regard is for scholars to mislabel their analysis as RTA, or to draw from a number of different approaches to TA, some of which may not be compatible with each other (Braun and Clarke 2012 , 2013 , 2019 ; Terry et al. 2017 ). In an attempt to resolve this confusion, Braun and Clarke have demarcated the position of RTA among the other forms of thematic analysis by differentiating between three principal approaches to TA: (1) coding reliability TA; (2) codebook approaches to TA, and; (3) the reflexive approach to TA (Braun et al. 2019 ).

Coding reliability approaches, such as those espoused by Boyatzis ( 1998 ) and Joffe ( 2012 ), accentuate the measurement of accuracy or reliability when coding data, often involving the use of a structured codebook. The researcher would also seek a degree of consensus among multiple coders, which can be measured using Cohen’s Kappa (Braun and Clarke 2013 ). When adopting a coding reliability approach, themes tend to be developed very early in the analytical process. Themes can be hypothesised based on theory prior to data collection, with evidence to support these hypotheses then gathered from the data in the form of codes. Alternatively, themes can be hypothesised following a degree of familiarisation with the data (Terry et al. 2017 ). Themes are typically understood to constitute ‘domain summaries’, or “summaries of what participants said in relation to a particular topic or data collection question” (Braun et al. 2019 , p. 5), and are likely to be discussed as residing within the data in a positivistic sense.

Codebook approaches, such as framework analysis (Smith and Firth 2011 ) or template analysis (King and Brooks 2017 ), can be understood to be something of a mid-point between coding reliability approaches and the reflexive approach. Like coding reliability approaches, codebook approaches adopt the use of a structured codebook and share the conceptualisation of themes as domain summaries. However, codebook approaches are more akin to the reflexive approach in terms of the prioritisation of a qualitative philosophy with regard to coding. Proponents of codebook approaches would typically forgo positivistic conceptions of coding reliability, instead recognising the interpretive nature of data coding (Braun et al. 2019 ).

The reflexive approach to TA highlights the researcher’s active role in knowledge production (Braun and Clarke 2019 ). Codes are understood to represent the researcher’s interpretations of patterns of meaning across the dataset. Reflexive thematic analysis is considered a reflection of the researcher’s interpretive analysis of the data conducted at the intersection of: (1) the dataset; (2) the theoretical assumptions of the analysis, and; (3) the analytical skills/resources of the researcher (Braun and Clarke 2019 ). It is fully appreciated—even expected—that no two researchers will intersect this tripartite of criteria in the same way. As such, there should be no expectation that codes or themes interpreted by one researcher may be reproduced by another (although, this is of course possible). Prospective proponents of RTA are discouraged from attempting to provide accounts of ‘accurate’ or ‘reliable’ coding, or pursuing consensus among multiple coders or using Cohen’s Kappa values. Rather, RTA is about “the researcher’s reflective and thoughtful engagement with their data and their reflexive and thoughtful engagement with the analytic process” (Braun and Clarke 2019 , p. 594). Multiple coders may, however, be beneficial in a reflexive manner (e.g. to sense-check ideas, or to explore multiple assumptions or interpretations of the data). If analysis does involve more than one researcher, the approach should be collaborative and reflexive, aiming to achieve richer interpretations of meaning, rather than attempting to achieve consensus of meaning. Indeed, in this sense it would be beneficial for proponents of RTA to remain cognisant that qualitative analysis as a whole does not contend to provide a single or ‘correct’ answer (Braun and Clarke 2013 ).

The process of coding (and theme development) is flexible and organic, and very often will evolve throughout the analytical process (Braun et al. 2019 ). Progression through the analysis will tend to facilitate further familiarity with the data, which may in turn result in the interpretation of new patterns of meaning. This is converse to the use of codebooks, which can often predefine themes before coding. Through the reflexive approach, themes are not predefined in order to ‘find’ codes. Rather, themes are produced by organising codes around a relative core commonality, or ‘central organising concept’, that the researcher interprets from the data (Braun and Clarke 2019 ).

In their 2006 paper, Braun and Clarke ( 2006 ) originally conceptualised RTA as a paradigmatically flexible analytical method, suitable for use within a wide range of ontological and epistemological considerations. In recent publications, the authors have moved away from this view, instead defining RTA as a purely qualitative approach. This pushes the use RTA into exclusivity under appropriate qualitative paradigms (e.g. constructionism) (Braun and Clarke 2019 , 2020 ). As opposed to other forms of qualitative analysis such as content analysis (Vaismoradi et al. 2013 ), and even other forms of TA such as Boyatzis’ ( 1998 ) approach, RTA eschews any positivistic notions of data interpretation. Braun and Clarke ( 2019 ) encourage the researcher to embrace reflexivity, subjectivity and creativity as assets in knowledge production, where they argue some scholars, such as Boyatzis ( 1998 ), may otherwise construe these assets as threats.

3 A worked example of reflexive thematic analysis

The data used in the following example is taken from the qualitative phase of a mixed methods study I conducted, which examined mental health in an educational context. This study set out to understand the attitudes and opinions of Irish post-primary educators with regard to the promotion of students’ social and emotional wellbeing, with the intention to feed this information back to key governmental and non-governmental stakeholders such as the National Council for Curriculum and Assessment and the Department of Education. The research questions for this study aimed to examine educators’ general attitudes toward the promotion of student wellbeing and towards a set of ‘wellbeing guidelines’ that had recently been introduced in Irish post-primary schools. I also wanted to identify any potential barriers to wellbeing promotion and to solicit educators’ opinions as to what might constitute apposite remedial measures in this regard.

The qualitative phase of this study, from which the data for this example is garnered, involved eleven semi-structured interviews, which lasted approximately 25–30 min each. Participants consisted of core-curriculum teachers, wellbeing curriculum teachers, pastoral care team-members and senior management members. Participants were questioned on their attitudes regarding the promotion of student wellbeing, the wellbeing curriculum, the wellbeing guidelines and their perceptions of their own wellbeing. When conducting these interviews, I loosely adhered to an interview agenda to ensure each of these four key topics were addressed. However, discussions were typically guided by what I interpreted to be meaningful to the interviewee, and would often weave in and out of these different topics.

The research questions for this study were addressed within a paradigmatic framework of interpretivism and constructivism. A key principle I adopted for this study was to reflect educators’ own accounts of their attitudes, opinions and experiences as faithfully as was possible, while also accounting for the reflexive influence of my own interpretations as the researcher. I felt RTA was highly appropriate in the context of the underlying theoretical and paradigmatic assumptions of my study and would allow me to ensure qualitative data was collected and analysed in a manner that respected and expressed the subjectivity of participants’ accounts of their attitudes, while also acknowledging and embracing the reflexive influence of my interpretations as the researcher.

In the next section, I will outline the theoretical assumptions of the RTA conducted in my original study in more detail. It should be noted that outlining these theoretical assumptions is not a task specific to reflexive thematic analysis. Rather, these assumptions should be addressed prior to implementing any form of thematic analysis (Braun and Clarke 2012 , 2019 , 2020 ; Braun et al. 2016 ). The six-phase process for conducting reflexive thematic analysis will then be appropriately detailed and punctuated with examples from my study.

3.1 Addressing underlying theoretical assumptions

Across several publications, Braun and Clarke ( 2012 , 2014 , 2020 ) have identified a number of theoretical assumptions that should be addressed when conducting RTA, or indeed any form of thematic analysis. These assumptions are conceptualised as a series of continua as follows: essentialist versus constructionist epistemologies; experiential versus critical orientation to data; inductive versus deductive analyses, and; semantic versus latent coding of data. The aim is not just for the researcher to identify where their analysis is situated on each of these continua, but why the analysis is situated as it is and why this conceptualisation is appropriate to answering the research question(s).

3.1.1 Essentialist versus constructionist epistemologies

Ontological and epistemological considerations would usually be determined when a study is first being conceptualised. However, these considerations may become salient again when data analysis becomes the research focus, particularly with regard to mixed methods. The purpose of addressing this continuum is to conceptualise theoretically how the researcher understands their data and the way in which the reader should interpret the findings (Braun and Clarke 2013 , 2014 ). By adhering to essentialism, the researcher adopts a unidirectional understanding of the relationship between language and communicated experience, in that it is assumed that language is a simple reflection of our articulated meanings and experiences (Widdicombe and Wooffiitt 1995 ). The meanings and systems inherent in constructing these meanings are largely uninterrogated, with the interpretive potential of TA largely unutilised (Braun et al. 2016 ).

Conversely, researchers of a constructionist persuasion would tend to adopt a bidirectional understanding of the language/experience relationship, viewing language as implicit in the social production and reproduction of both meaning and experience (Burr 1995 ; Schwandt 1998 ). A constructionist epistemology has particular implications with regard to thematic analysis, namely that in addition to the recurrence of perceptibly important information, meaningfulness is highly influential in the development and interpretation of codes and themes. The criteria for a theme to be considered noteworthy via recurrence is simply that the theme should present repeatedly within the data. However, what is common is not necessarily meaningful or important to the analysis. Braun and Clarke ( 2012 , p. 37) offer this example:

…in researching white-collar workers’ experiences of sociality at work, a researcher might interview people about their work environment and start with questions about their typical workday. If most or all reported that they started work at around 9:00 a.m., this would be a pattern in the data, but it would not necessarily be a meaningful or important one.

Furthermore, there may be varying degrees of conviction in respondents’ expression when addressing different issues that may facilitate in identifying the salience of a prospective theme. Therefore, meaningfulness can be conceptualised, firstly on the part of the researcher, with regard to the necessity to identify themes that are relevant to answering the research questions, and secondly on the part of the respondent, as the expression of varying degrees of importance with regard to the issues being addressed. By adopting a constructionist epistemology, the researcher acknowledges the importance of recurrence, but appreciates meaning and meaningfulness as the central criteria in the coding process.

In keeping with the qualitative philosophy of RTA, epistemological consideration regarding the example data were constructionist. As such, meaning and experience was interpreted to be socially produced and reproduced via an interplay of subjective and inter-subjective construction. Footnote 1

3.1.2 Experiential versus critical orientation

An experiential orientation to understanding data typically prioritises the examination of how a given phenomenon may be experienced by the participant. This involves investigating the meaning ascribed to the phenomenon by the respondent, as well as the meaningfulness of the phenomenon to the respondent. However, although these thoughts, feelings and experiences are subjectively and inter-subjectively (re)produced, the researcher would cede to the meaning and meaningfulness ascribed by the participant (Braun and Clarke 2014 ). Adopting an experiential orientation requires an appreciation that the thoughts, feelings and experiences of participants are a reflection of personal states held internally by the participant. Conversely, a critical orientation appreciates and analyses discourse as if it were constitutive, rather than reflective, of respondents’ personal states (Braun and Clarke 2014 ). As such, a critical perspective seeks to interrogate patterns and themes of meaning with a theoretical understanding that language can create, rather than merely reflect, a given social reality (Terry et al. 2017 ). A critical perspective can examine the mechanisms that inform the construction of systems of meaning, and therefore offer interpretations of meaning further to those explicitly communicated by participants. It is then also possible to examine how the wider social context may facilitate or impugn these systems of meaning (Braun and Clarke 2012 ). In short, the researcher uses this continuum to clarify their intention to reflect the experience of a social reality (experiential orientation) or examine the constitution of a social reality (critical orientation).

In the present example, an experiential orientation to data interpretation was adopted in order to emphasise meaning and meaningfulness as ascribed by participants. Adopting this approach meant that this analysis did not seek to make claims about the social construction of the research topic (which would more so necessitate a critical perspective), but rather acknowledged the socially constructed nature of the research topic when examining the subjective ‘personal states’ of participants. An experiential orientation was most appropriate as the aim of the study was to prioritise educators’ own accounts of their attitudes, opinions. More importantly, the research questions aimed to examine educators’ attitudes regarding their experience of promoting student wellbeing—or the ‘meanings made’—and not, for example, the socio-cultural factors that may underlie the development of these attitudes—or the ‘meaning making’.

3.1.3 Inductive versus deductive analysis

A researcher who adopts a deductive or ‘theory-driven’ approach may wish to produce codes relative to a pre-specified conceptual framework or codebook. In this case, the analysis would tend to be ‘analyst-driven’, predicated on the theoretically informed interpretation of the researcher. Conversely, a researcher who adopts an inductive or ‘data-driven’ approach may wish to produce codes that are solely reflective of the content of the data, free from any pre-conceived theory or conceptual framework. In this case, data are not coded to fit a pre-existing coding frame, but instead ‘open-coded’ in order to best represent meaning as communicated by the participants (Braun and Clarke 2013 ). Data analysed and coded deductively can often provide a less rich description of the overall dataset, instead focusing on providing a detailed analysis of a particular aspect of the dataset interpreted through a particular theoretical lens (Braun and Clarke 2020 ). Deductive analysis has typically been associated with positivistic/essentialist approaches (e.g. Boyatzis 1998 ), while inductive analysis tends to be aligned with constructivist approaches (e.g. Frith and Gleeson 2004 ). That being said, inductive/deductive approaches to analysis are by no means exclusively or intrinsically linked to a particular epistemology.

Coding and analysis rarely fall cleanly into one of these approaches and, more often than not, use a combination of both (Braun and Clarke 2013 , 2019 , 2020 ). It is arguably not possible to conduct an exclusively deductive analysis, as an appreciation for the relationship between different items of information in the data set is necessary in order to identify recurring commonalities with regard to a pre-specified theory or conceptual framework. Equally, it is arguably not possible to conduct an exclusively inductive analysis, as the researcher would require some form of criteria to identify whether or not a piece of information may be conducive to addressing the research question(s), and therefore worth coding. When addressing this issue, Braun and Clarke ( 2012 ) clarify that one approach does tend to predominate over the other, and that the predominance of the deductive or inductive approach can indicate an overall orientation towards prioritising either researcher/theory-based meaning or respondent/data-based meaning, respectively.

A predominantly inductive approach was adopted in this example, meaning data was open-coded and respondent/data-based meanings were emphasised. A degree of deductive analysis was, however, employed to ensure that the open-coding contributed to producing themes that were meaningful to the research questions, and to ensure that the respondent/data-based meanings that were emphasised were relevant to the research questions.

3.1.4 Semantic versus latent coding

Semantic codes are identified through the explicit or surface meanings of the data. The researcher does not examine beyond what a respondent has said or written. The production of semantic codes can be described as a descriptive analysis of the data, aimed solely at presenting the content of the data as communicated by the respondent. Latent coding goes beyond the descriptive level of the data and attempts to identify hidden meanings or underlying assumptions, ideas, or ideologies that may shape or inform the descriptive or semantic content of the data. When coding is latent, the analysis becomes much more interpretive, requiring a more creative and active role on the part of the researcher. Indeed, Braun and Clarke ( 2012 , 2013 , 2020 ) have repeatedly presented the argument that codes and themes do not ‘emerge’ from the data or that they may be residing in the data, waiting to be found. Rather, the researcher plays an active role in interpreting codes and themes, and identifying which are relevant to the research question(s). Analyses that use latent coding can often overlap with aspects of thematic discourse analysis in that the language used by the respondent can be used to interpret deeper levels of meaning and meaningfulness (Braun and Clarke 2006 ).

In this example, both semantic and latent coding were utilised. No attempt was made to prioritise semantic coding over latent coding or vice-versa. Rather, semantic codes were produced when meaningful semantic information was interpreted, and latent codes were produced when meaningful latent information was interpreted. As such, any item of information could be double-coded in accordance with the semantic meaning communicated by the respondent, and the latent meaning interpreted by the researcher (Patton 1990 ). This was reflective of the underlying theoretical assumptions of the analysis, as the constructive and interpretive epistemology and ontology were addressed by affording due consideration to both the meaning constructed and communicated by the participant and my interpretation of this meaning as the researcher.

3.2 The six-phase analytical process

Braun and Clarke ( 2012 , 2013 , 2014 , 2020 ) have proposed a six-phase process, which can facilitate the analysis and help the researcher identify and attend to the important aspects of a thematic analysis. In this sense, Braun and Clarke ( 2012 ) have identified the six-phase process as an approach to doing TA, as well as learning how to do TA. While the six phases are organised in a logical sequential order, the researcher should be cognisant that the analysis is not a linear process of moving forward through the phases. Rather, the analysis is recursive and iterative, requiring the researcher to move back and forth through the phases as necessary (Braun and Clarke 2020 ). TA is a time consuming process that evolves as the researcher navigates the different phases. This can lead to new interpretations of the data, which may in turn require further iterations of earlier phases. As such, it is important to appreciate the six-phase process as a set of guidelines, rather than rules, that should be applied in a flexible manner to fit the data and the research question(s) (Braun and Clarke 2013 , 2020 ).

3.2.1 Phase one: familiarisation with the data

The ‘familiarisation’ phase is prevalent in many forms of qualitative analysis. Familiarisation entails the reading and re-reading of the entire dataset in order to become intimately familiar with the data. This is necessary to be able to identify appropriate information that may be relevant to the research question(s). Manual transcription of data can be a very useful activity for the researcher in this regard, and can greatly facilitate a deep immersion into the data. Data should be transcribed orthographically, noting inflections, breaks, pauses, tones, etc. on the part of both the interviewer and the participant (Braun and Clarke 2013 ). Often times, data may not have been gathered or transcribed by the researcher, in which case, it would be beneficial for the researcher to watch/listen to video or audio recordings to achieve a greater contextual understanding of the data. This phase can be quite time consuming and requires a degree of patience. However, it is important to afford equal consideration across the entire depth and breadth of the dataset, and to avoid the temptation of being selective of what to read, or even ‘skipping over’ this phase completely (Braun and Clarke 2006 ).

At this phase, I set about familiarising myself with the data by firstly listening to each interview recording once before transcribing that particular recording. This first playback of each interview recording required ‘active listening’ and, as such, I did not take any notes at this point. I performed this active-listen in order to develop an understanding of the primary areas addressed in each interview prior to transcription. This also provided me an opportunity, unburdened by tasks such as note taking, to recall gestures and mannerisms that may or may not have been documented in interview notes. I manually transcribed each interview immediately after the active-listen playback. When transcription of all interviews was complete, I read each transcripts numerous times. At this point, I took note of casual observations of initial trends in the data and potentially interesting passages in the transcripts. I also documented my thoughts and feelings regarding both the data and the analytical process (in terms of transparency, it would be beneficial to adhere to this practice throughout the entire analysis). Some preliminary notes made during the early iterations of familiarisation with the data can be seen in Box 1. It will be seen later that some of these notes would go on to inform the interpretation of the finalised thematic framework.

Example of preliminary notes taken during phase one

3.2.2 Phase two: generating initial codes

Codes are the fundamental building blocks of what will later become themes. The process of coding is undertaken to produce succinct, shorthand descriptive or interpretive labels for pieces of information that may be of relevance to the research question(s). It is recommended that the researcher work systematically through the entire dataset, attending to each data item with equal consideration, and identifying aspects of data items that are interesting and may be informative in developing themes. Codes should be brief, but offer sufficient detail to be able to stand alone and inform of the underlying commonality among constituent data items in relation to the subject of the research (Braun and Clarke 2012 ; Braun et al. 2016 ).

A brief excerpt of the preliminary coding process of one participant’s interview transcript is presented in Box 2. The preliminary iteration of coding was conducted using the ‘comments’ function in Microsoft Word (2016). This allowed codes to be noted in the side margin, while also highlighting the area of text assigned to each respective code. This is a relatively straightforward example with no double-codes or overlap in data informing different codes, as new codes begin where previous codes end. The code C5 offers an exemplar of the provision of sufficient detail to explain what I interpreted from the related data item. A poor example of this code would be to say “the wellbeing guidelines are not relatable” or “not relatable for students”. Each of these examples lack context. Understanding codes written in this way would be contingent upon knowledge of the underlying data extract. The code C8 exemplifies this issue. It is unclear if the positivity mentioned relates to the particular participant, their colleagues, or their students. This code was subsequently redefined in later iterations of coding. It can also be seen in this short example that the same code has been produced for both C4 and C9. This code was prevalent throughout the entire dataset and would subsequently be informative in the development of a theme.

Extract of preliminary coding

Any item of data that might be useful in addressing the research question(s) should be coded. Through repeated iterations of coding and further familiarisation, the researcher can identify which codes are conducive to interpreting themes and which can be discarded. I would recommend that the researcher document their progression through iterations of coding to track the evolution of codes and indeed prospective themes. RTA is a recursive process and it is rare that a researcher would follow a linear path through the six phases (Braun and Clarke 2014 ). It is very common for the researcher to follow a particular train of thought when coding, only to encounter an impasse where several different interpretations of the data come to light. It may be necessary to explore each of these prospective options to identify the most appropriate path to follow. Tracking the evolution of codes will not only aid transparency, but will afford the researcher signposts and waypoints to which they may return should a particular approach to coding prove unfruitful. I tracked the evolution of my coding process in a spreadsheet, with data items documented in the first column and iterations of codes in each successive column. I found it useful to highlight which codes were changed in each successive iteration. Table 1 provides an excerpt of a Microsoft Excel (2016) spreadsheet that was established to track iterations of coding and document the overall analytical process. All codes developed during the first iteration of coding were transferred into this spreadsheet along with a label identifying the respective participant. Subsequent iterations of coding were documented in this spreadsheet. The original transcripts were still regularly consulted to assess existing codes and examine for the interpretation of new codes as further familiarity with the data developed. Column one presents a reference number for the data item that was coded, while column two indicates the participant who provided each data item. Column three presents the data item that was coded. Columns four and five indicate the iteration of the coding process to be the third and fourth iteration, respectively. Codes revised between iterations three and four are highlighted.

With regard to data item one, I initially considered that a narrative might develop exploring a potential discrepancy in levels of training received by wellbeing educators and non-wellbeing educators. In early iterations of coding, I adopted a convention of coding training-related information with reference to the wellbeing or non-wellbeing status of the participant. While this discrepancy in levels of training remained evident throughout the dataset, I eventually deemed it unnecessary to pursue interpretation of the data in this way. This coding convention was abandoned at iteration four in favour of the pre-existing generalised code “insufficient training in wellbeing curriculum”. With data item three, I realised that the code was descriptive at a semantic level, but not very informative. Upon re-evaluating this data item, I found the pre-existing code “lack of clarity in assessing student wellbeing” to be much more appropriate and representative of what the participant seemed to be communicating. Finally, I realised that the code for data item five was too specific to this particular data item. No other data item shared this code, which would preclude this code (and data item) from consideration when construction themes. I decided that this item would be subsumed under the pre-existing code “more training is needed for wellbeing promotion”.

The process of generating codes is non-prescriptive regarding how data is segmented and itemised for coding, and how many codes or what type of codes (semantic or latent) are interpreted from an item of data. The same data item can be coded both semantically and latently if deemed necessary. For example, when discussing how able they felt to attend to their students’ wellbeing needs, one participant stated “…if someone’s struggling a bit with their schoolwork and it’s getting them down a bit, it’s common sense that determines what we say to them or how we approach them. And it might help to talk, but I don’t know that it has a lasting effect” [2B]. Here, I understood that the participant was explicitly sharing the way in which they address their students’ wellbeing concerns, but also that the participant was implying that this commonsense approach might not be sufficient. As such, this data item was coded both semantically as “educators rely on common sense when attending to wellbeing issues”, and latently as “common sense inadequate for wellbeing promotion”. Both codes were revised later in the analysis. However, this example illustrates the way in which any data item can be coded in multiple ways and for multiple meanings. There is also no upper or lower limit regarding how many codes should be interpreted. What is important is that, when the dataset is fully coded and codes are collated, sufficient depth exists to examine the patterns within the data and the diversity of the positions held by participants. It is, however, necessary to ensure that codes pertain to more than one data item (Braun and Clarke 2012 ).

3.2.3 Phase three: generating themes

This phase begins when all relevant data items have been coded. The focus shifts from the interpretation of individual data items within the dataset, to the interpretation of aggregated meaning and meaningfulness across the dataset. The coded data is reviewed and analysed as to how different codes may be combined according to shared meanings so that they may form themes or sub-themes. This will often involve collapsing multiple codes that share a similar underlying concept or feature of the data into one single code. Equally, one particular code may turn out to be representative of an over-arching narrative within the data and be promoted as a sub-theme or even a theme (Braun and Clarke 2012 ). It is important to re-emphasise that themes do not reside in the data waiting to be found. Rather, the researcher must actively construe the relationship among the different codes and examine how this relationship may inform the narrative of a given theme. Construing the importance or salience of a theme is not contingent upon the number of codes or data items that inform a particular theme. What is important is that the pattern of codes and data items communicates something meaningful that helps answer the research question(s) (Braun and Clarke 2013 ).

Themes should be distinctive and may even be contradictory to other themes, but should tie together to produce a coherent and lucid picture of the dataset. The researcher must be able and willing to let go of codes or prospective themes that may not fit within the overall analysis. It may be beneficial to construct a miscellaneous theme (or category) to contain all the codes that do not appear to fit in among any prospective themes. This miscellaneous theme may end up becoming a theme in its own right, or may simple be removed from the analysis during a later phase (Braun and Clarke 2012 ). Much the same as with codes, there is no correct amount of themes. However, with too many themes the analysis may become unwieldy and incoherent, whereas too few themes can result in the analysis failing to explore fully the depth and breadth of the data. At the end of this stage, the researcher should be able to produce a thematic map (e.g. a mind map or affinity map) or table that collates codes and data items relative to their respective themes (Braun and Clarke 2012 , 2020 ).

At this point in the analysis, I assembled codes into initial candidate themes. A thematic map of the initial candidate themes can be seen in Fig.  1 . The theme “best practice in wellbeing promotion” was clearly definable, with constituent coded data presenting two concurrent narratives. These narratives were constructed as two separate sub-themes, which emphasised the involvement of the entire school staff and the active pursuit of practical measures in promoting student wellbeing, respectively. The theme “recognising student wellbeing” was similarly clear. Again, I interpreted a dichotomy of narratives. However, in this case, the two narratives seemed to be even more synergetic. The two sub-themes for “best practice…” highlighted two independently informative factors in best practice. Here, the sub-themes are much more closely related, with one sub-theme identifying factors that may inhibit the development of student wellbeing, while the second sub-theme discusses factors that may improve student wellbeing. At this early stage in the analysis, I was considering that this sub-theme structure might also be used to delineate the theme “recognising educator wellbeing”. Finally, the theme “factors influencing wellbeing promotion” collated coded data items that addressed inhibitive factors with regard to wellbeing promotion. These factors were conceptualised as four separate sub-themes reflecting a lack of training, a lack of time, a lack of appropriate value for wellbeing promotion, and a lack of knowledge of supporting wellbeing-related documents. While it was useful to bring all of this information together under one theme, even at this early stage it was evident that this particular theme was very dense and unwieldy, and would likely require further revision.

Initial thematic map indicating four candidate themes

3.2.4 Phase four: reviewing potential themes

This phase requires the researcher to conduct a recursive review of the candidate themes in relation to the coded data items and the entire dataset (Braun and Clarke 2012 , 2020 ). At this phase, it is not uncommon to find that some candidate themes may not function well as meaningful interpretations of the data, or may not provide information that addresses the research question(s). It may also come to light that some of the constituent codes and/or data items that inform these themes may be incongruent and require revision. Braun and Clarke ( 2012 , p. 65) proposed a series of key questions that the researcher should address when reviewing potential themes. They are:

Is this a theme (it could be just a code)?

If it is a theme, what is the quality of this theme (does it tell me something useful about the data set and my research question)?

What are the boundaries of this theme (what does it include and exclude)?

Are there enough (meaningful) data to support this theme (is the theme thin or thick)?

Are the data too diverse and wide ranging (does the theme lack coherence)?

The analysis conducted at this phase involves two levels of review. Level one is a review of the relationships among the data items and codes that inform each theme and sub-theme. If the items/codes form a coherent pattern, it can be assumed that the candidate theme/sub-theme makes a logical argument and may contribute to the overall narrative of the data. At level two, the candidate themes are reviewed in relation to the data set. Themes are assessed as to how well they provide the most apt interpretation of the data in relation to the research question(s). Braun and Clarke have proposed that, when addressing these key questions, it may be useful to observe Patton’s ( 1990 ) ‘dual criteria for judging categories’ (i.e. internal homogeneity and external heterogeneity). The aim of Patton’s dual criteria would be to observe internal homogeneity within themes at the level one review, while observing external heterogeneity among themes at the level two review. Essentially, these two levels of review function to demonstrate that items and codes are appropriate to inform a theme, and that a theme is appropriate to inform the interpretation of the dataset (Braun and Clarke 2006 ). The outcome of this dual-level review is often that some sub-themes or themes may need to be restructured by adding or removing codes, or indeed adding or removing themes/sub-themes. The finalised thematic framework that resulted from the review of the candidate themes can be seen in Fig.  2 .

Finalised thematic map demonstrating five themes

During the level one review, inspection of the prospective sub-theme “sources of negative affect” in relation to the theme “recognising educator wellbeing” resulted in a new interpretation of the constituent coded data items. Participants communicated numerous pre-existing work-related factors that they felt had a negative impact upon their wellbeing. However, it was also evident that participants felt the introduction of the new wellbeing curriculum and the newly mandated task of formally attending to student wellbeing had compounded these pre-existing issues. While pre-existing issues and wellbeing-related issues were both informative of educators’ negative affect, the new interpretation of this data informed the realisation of two concurrent narratives, with wellbeing-related issues being a compounding factor in relation to pre-existing issues. This resulted in the “sources of negative affect” sub-theme being split into two new sub-themes; “work-related negative affect” and “the influence of wellbeing promotion”. The “actions to improve educator wellbeing” sub-theme was folded into these sub-themes, with remedial measures for each issue being discussed in respective sub-themes.

During the level two review, my concerns regarding the theme “factors inhibiting wellbeing promotion” were addressed. With regard to Braun and Clarke’s key questions, it was quite difficult to identify the boundaries of this theme. It was also particularly dense (or too thick) and somewhat incoherent. At this point, I concluded that this theme did not constitute an appropriate representation of the data. Earlier phases of the analysis were reiterated and new interpretations of the data were developed. This candidate theme was subsequently broken down into three separate themes. While the sub-themes of this candidate theme were, to a degree, informative in the development of the new themes, the way in which the constituent data was understood was fundamentally reconceptualised. The new theme, entitled “the influence of time”, moves past merely describing time constraints as an inhibitive factor in wellbeing promotion. A more thorough account of the bi-directional nature of time constraints was realised, which acknowledged that previously existing time constraints affected wellbeing promotion, while wellbeing promotion compounded previously existing time constraints. This added an analysis of the way in which the introduction of wellbeing promotion also produced time constraints in relation to core curricular activities.

The candidate sub-themes “lack of training” and “knowledge of necessary documents” were re-evaluated and considered to be topical rather than thematic aspects of the data. Upon further inspection, I felt that the constituent coded data items of these two sub-themes were informative of a single narrative of participants attending to their students’ wellbeing in an atheoretical manner. As such, these two candidate sub-themes were folded into each other to produce the theme “incompletely theorised agreements”. Finally, the level two review led me to the conclusion that the full potential of the data that informed the candidate sub-theme “lack of value of wellbeing promotion” was not realised. I found that a much richer understanding of this data was possible, which was obscured by the initial, relatively simplistic, descriptive account offered. An important distinction was made, in that participants held differing perceptions of the value attributed to wellbeing promotion by educators and by students. Further, I realised that educators’ perceptions of wellbeing promotion were not necessarily negative and should not be exclusively presented as an inhibitive factor in wellbeing promotion. A new theme, named “the axiology of wellbeing” and informed by the sub-themes “students’ valuation of wellbeing promotion” and “educators’ valuation of wellbeing promotion”, was developed to delineate this multifaceted understanding of participants’ accounts of the value of wellbeing promotion.

It is quite typical at this phase that codes, as well as themes, may be revised or removed to facilitate the most meaningful interpretation of the data. As such, it may be necessary to reiterate some of the activities undertaken during phases two and three of the analysis. It may be necessary to recode some data items, collapse some codes into one, remove some codes, or promote some codes as sub-themes or themes. For example, when re-examining the data items that informed the narrative of the value ascribed to wellbeing promotion, I observed that participants offered very different perceptions of the value ascribed by educators and by students. To pursue this line of analysis, numerous codes were reconceptualised to reflect the two different perspectives. Codes such as “positivity regarding the wellbeing curriculum” were split into the more specified codes “student positivity regarding the wellbeing curriculum” and “educator positivity regarding the wellbeing curriculum”. Amending codes in this way ultimately contributed to the reinterpretation of the data and the development of the finalised thematic map.

As with all other phases, it is very important to track and document all of these changes. With regard to some of the more significant changes (removing a theme, for example), I would recommend making notes on why it might be necessary to take this action. The aim of this phase is to produce a revised thematic map or table that captures the most important elements of the data in relation to the research question(s).

3.2.5 Phase five: defining and naming theme

At this phase, the researcher is tasked with presenting a detailed analysis of the thematic framework. Each individual theme and sub-theme is to be expressed in relation to both the dataset and the research question(s). As per Patton’s ( 1990 ) dual criteria, each theme should provide a coherent and internally consistent account of the data that cannot be told by the other themes. However, all themes should come together to create a lucid narrative that is consistent with the content of the dataset and informative in relation to the research question(s). The names of the themes are also subject to a final revision (if necessary) at this point.

Defining themes requires a deep analysis of the underlying data items. There will likely be many data items underlying each theme. It is at this point that the researcher is required to identify which data items to use as extracts when writing up the results of the analysis. The chosen extracts should provide a vivid and compelling account of the arguments being made by a respective theme. Multiple extracts should be used from the entire pool of data items that inform a theme in order to convey the diversity of expressions of meaning across these data items, and to demonstrate the cohesion of the theme’s constituent data items. Furthermore, each of the reported data extracts should be subject to a deep analysis, going beyond merely reporting what a participant may have said. Each extract should be interpreted in relation to its constitutive theme, as well as the broader context of the research question(s), creating an analytic narrative that informs the reader what is interesting about this extract and why (Braun and Clarke 2012 ).

Data extracts can be presented either illustratively, providing a surface-level description of what participants said, or analytically, interrogating what has been interpreted to be important about what participants said and contextualising this interpretation in relation to the available literature. If the researcher were aiming to produce a more illustrative write-up of the analysis, relating the results to the available literature would tend to be held until the ‘discussion’ section of the report. If the researcher were aiming to produce an analytical write-up, extracts would tend to be contextualised in relation to the literature as and when they are reported in the ‘results’ section (Braun and Clarke 2013 ; Terry et al. 2017 ). While an illustrative write-up of RTA results is completely acceptable, the researcher should remain cognisant that the narrative of the write-up should communicate the complexities of the data, while remaining “embedded in the scholarly field” (Braun and Clarke 2012 , p. 69). RTA is an interpretive approach to analysis and, as such, the overall report should go beyond describing the data, providing theoretically informed arguments as to how the data addresses the research question(s). To this end, a relatively straightforward test can reveal a researcher’s potential proclivity towards one particular reporting convention: If an extract can be removed and the write-up still makes sense, the reporting style is illustrative; if an extract is removed and the write-up no longer makes sense, the reporting style is analytical (Terry et al. 2017 ).

The example in Box 3 contains a brief excerpt from the sub-theme “the whole-school approach”, which demonstrates the way in which a data extract may be reported in an illustrative manner. Here, the narrative discussed the necessity of having an ‘appropriate educator’ deliver the different aspects of the wellbeing curriculum. One participant provided a particularly useful real-world example of the potential negative implications of having ‘the wrong person’ for this job in relation to physical education (one of the aspects of the wellbeing curriculum). This data extract very much informed the narrative and illustrated participants’ arguments regarding the importance of choosing an appropriate educator for the job.

Example of data extract reported illustratively

In Box 4, an example is offered of how a data extract may be reported in an analytical manner. This excerpt is also taken from the sub-theme “the whole-school approach”, and also informs the ‘appropriate educator for the job’ narrative. Here, however, sufficient evidence has already been established to illustrate the perspectives of the participants. The report turns to a deeper analysis of what has been said and how it has been said. Specifically, the way in which participants seemed to construe an ‘appropriate educator’ was examined and related to existing literature. The analytical interpretation of this data extract (and others) proposes interesting implications regarding the way in which participants constructed their schema of an ‘appropriate educator’.

Example of data extract reported analytically

The names of themes are also subject to a final review (if necessary) at this point. Naming themes may seem trivial and might subsequently receive less attention than it actually requires. However, naming themes is a very important task. Theme names are the first indication to the reader of what has been captured from the data. Names should be concise, informative, and memorable. The overriding tendency may be to create names that are descriptors of the theme. Braun and Clarke ( 2013 , 2014 , 2020 ) encourage creativity and advocate the use of catchy names that may more immediately capture the attention of the reader, while also communicating an important aspect of the theme. To this end, they suggest that it may be useful to examine data items for a short extract that could be used to punctuate the theme name.

3.2.6 Phase six: producing the report

The separation between phases five and six can often be blurry. Further, this ‘final’ phase would rarely only occur at the end of the analysis. As opposed to practices typical of quantitative research that would see the researcher conduct and then write up the analysis, the write-up of qualitative research is very much interwoven into the entire process of the analysis (Braun and Clarke 2012 ). Again, as with previous phases, this will likely require a recursive approach to report writing. As codes and themes change and evolve over the course of the analysis, so too can the write-up. Changes should be well documented by this phase and reflected in informal notes and memos, as well as a research journal that should be kept over the entire course of the research. Phase six then, can be seen as the completion and final inspection of the report that the researcher would most likely have begun writing before even undertaking their thematic analysis (e.g. a journal article or thesis/dissertation).

A useful task to address at this point would be to establish the order in which themes are reported. Themes should connect in a logical and meaningful manner, building a cogent narrative of the data. Where relevant, themes should build upon previously reported themes, while remaining internally consistent and capable of communicating their own individual narrative if isolated from other themes (Braun and Clarke 2012 ). I reported the theme “best practice in wellbeing promotion” first, as I felt it established the positivity that seemed to underlie the accounts provided by all of my participants. This theme was also strongly influence by semantic codes, with participants being very capable of describing what they felt would constitute ‘best practice’. I saw this as an easily digestible first theme to ease the reader into the wider analysis. It made sense to report “the axiology of wellbeing promotion” next. This theme introduced the reality that, despite an underlying degree of positivity, participants did indeed have numerous concerns regarding wellbeing promotion, and that participants’ attitudes were generally positive with a significant ‘but’. This theme provided good sign-posting for the next two themes that would be reported, which were “the influence of time” and “incompletely theorised agreements”, respectively. I reported “the influence of time” first, as this theme established how time constraints could negatively affect educator training, contributing to a context in which educators were inadvertently pushed towards adopting incompletely theorised agreements when promoting student wellbeing. The last theme to be reported was “recognising educator wellbeing”. As the purpose of the analysis was to ascertain the attitudes of educators regarding wellbeing promotion, it felt appropriate to offer the closing commentary of the analysis to educators’ accounts of their own wellbeing. This became particularly pertinent when the sub-themes were revised to reflect the influence of pre-existing work-related issues and the subsequent influence of wellbeing promotion.

An issue proponents of RTA may realise when writing up their analysis is the potential for incongruence between traditional conventions for report writing and the appropriate style for reporting RTA—particularly when adopting an analytical approach to reporting on data. The document structure for academic journal articles and Masters or PhD theses typically subscribe to the convention of reporting results of analyses in a ‘results’ section and then synthesising and contextualising the results of analyses in a ‘discussion’ section. Conversely, Braun and Clarke recommend synthesising and contextualising data as and when they are reported in the ‘results’ section (Braun and Clarke 2013 ; Terry et al. 2017 ). This is a significant departure from the traditional reporting convention, which researchers—particularly post-graduate students—may find difficult to reconcile. While Braun and Clarke do not explicitly address this potential issue, it is implicitly evident that they would advocate that researchers prioritise the appropriate reporting style for RTA and not cede to the traditional reporting convention.

4 Conclusion

Although Braun and Clarke are widely published on the topic of reflexive thematic analysis, confusion persists in the wider literature regarding the appropriate implementation of this approach. The aim of this paper has been to contribute to dispelling some of this confusion by provide a worked example of Braun and Clarke’s contemporary approach to reflexive thematic analysis. To this end, this paper provided instruction in how to address the theoretical underpinnings of RTA by operationalising the theoretical assumptions of the example data in relation to the study from which the data was taken. Clear instruction was also provided in how to conduct a reflexive thematic analysis. This was achieved by providing a detailed step-by-step guide to Braun and Clarke’s six-phase process, and by providing numerous examples of the implementation of each phase based on my own research. Braun and Clarke have made (and continue to make) an extremely valuable contribution to the discourse regarding qualitative analysis. I strongly recommended that any prospective proponents of RTA who may read this paper thoroughly examine Braun and Clarke’s full body of literature in this area, and aim to achieve an understanding of RTA’s nuanced position among the numerous different approaches to thematic analysis.

While the reconceptualisation of RTA as falling within the remit of a purely qualitative paradigm precipitates that the research fall on the constructionist end of this continuum, it is nevertheless good practice to explicate this theoretical position.

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Byrne, D. A worked example of Braun and Clarke’s approach to reflexive thematic analysis. Qual Quant 56 , 1391–1412 (2022). https://doi.org/10.1007/s11135-021-01182-y

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Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study

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• 1 College of Human and Health Sciences, Swansea University, Swansea, UK; Faculty of Professional Studies, University of Nordland, Bodø, Norway.
• PMID: 23480423
• DOI: 10.1111/nhs.12048

Qualitative content analysis and thematic analysis are two commonly used approaches in data analysis of nursing research, but boundaries between the two have not been clearly specified. In other words, they are being used interchangeably and it seems difficult for the researcher to choose between them. In this respect, this paper describes and discusses the boundaries between qualitative content analysis and thematic analysis and presents implications to improve the consistency between the purpose of related studies and the method of data analyses. This is a discussion paper, comprising an analytical overview and discussion of the definitions, aims, philosophical background, data gathering, and analysis of content analysis and thematic analysis, and addressing their methodological subtleties. It is concluded that in spite of many similarities between the approaches, including cutting across data and searching for patterns and themes, their main difference lies in the opportunity for quantification of data. It means that measuring the frequency of different categories and themes is possible in content analysis with caution as a proxy for significance.

Keywords: content analysis; nursing; qualitative descriptive research; thematic analysis.

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Thematic analysis is a widely used method for analyzing qualitative data in social sciences research. This research article provides a step-by-step guide on conducting thematic analysis manually, emphasizing the importance of understanding the process for researchers seeking a deeper grasp of the nuances involved. The article highlights the key steps, including familiarizing oneself with the data, generating initial codes, searching for themes, reviewing and refining them, defining and naming the themes, and producing a final report. Through iterative reading, note-taking, and coding techniques, researchers can delve deep into the data, capture meaningful details, and uncover rich insights. Thematic analysis offers a valuable avenue for developing theoretical understanding, generating nuanced interpretations, and contributing to knowledge advancement in tourism research. The article also discusses the relevance and adaptability of thematic analysis in various qualitative research designs and methodologies. By prioritizing transparency, rigor, and a manual coding approach, researchers can ensure the validity and reliability of their thematic analysis, leading to robust and insightful findings.

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A Qualitative Content Analysis of Online Public Mental Health Resources for COVID-19

Faith martin.

1 Centre for Intelligent Healthcare, Coventry University, Coventry, United Kingdom

Thomas Oliver

2 Department of Social Sciences, University of the West of England, Bristol, United Kingdom

Associated Data

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author/s.

The COVID-19 pandemic has far reaching potential public mental health impacts and is linked to higher levels of depression and anxiety. To address these in part, online information resources acted as mass interventions. It is vital to explore the content of these interventions, to consider the framing of the pandemic and to examine the extent to which their content is relevant. In March 2020, a qualitative content analysis was undertaken of 39 easily accessible online resources that offered advice, tips or guidance relating to mental health or mental wellbeing and COVID-19. Their content was compared to subsequent reports of the mental health impact of the pandemic. Resources frequently focused on anxiety. The content of intervention was typically of a cognitive-behavioral nature, with a significant focus on maintaining social contact. Typically, distress related to the situation was normalized and stigmatizing language was not seen. Data revealed a significant impact of the pandemic on depression as well as anxiety measures in the general UK population. A key recommendation is to ensure both depression and anxiety are addressed in these public mental health resources.

Introduction

The COVID-19 pandemic presented a major public health and public mental health challenge. At the start of the pandemic in March 2020, reviews of the impact of restrictions such as quarantine and COVID-19 itself pointed to an understandable effect on psychological wellbeing and mental health. Prior to COVID-19, research on the psychological impacts of epidemics and quarantine suggested high risk of potential distress including confusion, loss, anger, frustration, low mood, fear, stress, insomnia and boredom, with a minority of participants reporting high levels of depressive symptoms and anxiety ( 1 – 7 ). Given the impact on entire populations, often under protective measures that restrict their movement and interaction with others, even a minority of the population represents a significant number of people in distress and a significant challenge to the mental health services. UK data suggest that anxiety and depression levels “spiked” at the point at which the lockdown strategy was announced ( 8 ), prompting online public mental health information.

“Lockdown” and threat of illness are stressful. Stopping work, loss of routine, reduced physical social contact, a sense of isolation and loss of day-to-day activities are all identified as stressors, which can be addressed with coping and stress management techniques, problem solving, self-care, alleviation boredom, use of social networks, engagement with reliable information and re-iterating the purpose of isolation is to keep others safe ( 1 , 2 , 9 ). Sharing basic strategies to manage this distress has been recommended ( 10 ), alongside a need for online psychoeducation and self-management support, with self-directed interventions ( 7 , 11 – 13 ).

Numerous online resources offering support and guidance on how to manage one's mental health were published in March 2020, in the period where the pandemic rose to the public's awareness and protective measures were enacted in many nations. These were effectively mass interventions, to attempt to maintain psychological wellbeing or minimize adverse impact on mental health. Many online resources were produced, however for these to be useful, their content must be optimized. Some would argue that anxiety and distress in the face of this global health threat is entirely normal. However, it is also important to offer support and strategies to maintain wellbeing, and further intervention where people require more specialist mental health support.

The content of online resources intending to address mental health needs to be explored, to highlight any areas of omission in particular. This is important both at the time of the protective measures being put into place and subsequently, to learn from this pandemic and plan for the next. Indeed, future pandemics are thought to be “inevitable” ( 14 ). Mental health is key in their management: avoiding or treating depression and anxiety is important in its own right, but also as they may be linked to lower engagement in adaptive health-behaviors needed for COVID-19, as they are for many other health behaviors ( 15 ). The way in which these resources frame both COVID-19 and mental health is also important to understand and potentially improve. Excessive fear arousal or global descriptions of lack of personal control are likely to risk both mental health and adherence to public health infection reduction measures ( 16 , 17 ). Stigmatizing messages must be avoided, for both mental health and COVID-19 ( 1 ). This study aimed to complete a rapid content analysis of the easily accessible, online resources to elucidate their content, comparing these to subsequent data on the mental health impact of the pandemic.

Sampling of Resources

Google search for “COVID-19 mental health” was conducted (29/03/2020). The first twenty results that included guidance and advice were selected for analysis. An additional 10 novel results (i.e. disregarding duplicates from previous search) from a search for “COVID-19 mental wellbeing” were also selected. The searches were limited to results in English and was conducted from google.co.uk. This was augmented by Twitter searches using the same terms, selecting results not duplicating those from the Google searches. Snowballing was used to identify further resources from links within the online documentation. Links to other resources were all noted and these resources then analyzed.

Analysis began immediately with the Google search results, then Twitter results and snowballed results. Sampling was ceased when saturation was reached.

Evidence of the Mental Health Impact of COVID-19

The sampling of resources relating to the pandemic focused was conducted in the UK, and was limited to results in English. As such, the evidence we use to compare the impact of the pandemic on mental health uses UK focused data. The Office of National Statistics (ONS) is a UK government organization that collects, analyses and reports on relevant health, wellbeing, economic and population data. During the COVID-19 pandemic, they have collected and reported data relating to anxiety and depression symptom experience in adults. Data were collected using common measures—the Patient Health Questionnaire for depression ( 18 ) and the Generalized Anxiety Disorder assessment for anxiety ( 19 ). The measures provide an indication of those with probable clinical levels of depression or anxiety. These data were used to identify the estimated actual impact on the pandemic on mental health. An ONS report on depression provides data from pre-pandemic, 2020 and January-March 2021 ( 20 ). The report on anxiety uses data from the early pandemic—from April to May 2020 ( 21 ). These are supplemented by a report presenting data from July-August 2021 ( 22 ).

Data Analysis

The content from each resource was downloaded. Qualitative content analysis was used inductively to code the data, as this approach allows analysis of both the explicit content and the latent meaning ( 23 ). Descriptions of the (a) type of data source, (b) type of resource, and (c) focus/topics were analyzed to create discrete categories addressing each factor. The details of the guidance itself were initially described with open-ended, descriptive responses. These were inspected to form inductive categories relating to each of the six areas outlined in the data collection (key message, diagnostic categories, responsibility, mechanism for change, normalization, claims). After analysis of 10 resources, initial categories were created and each resource re-checked for the presence of all categories. As analysis continued, with each new category, the previous resources were re-checked to explore whether this category was present. All data were first analyzed by one researcher, and then second coded by the other.

Coding continued until all the initially identified resources had been analyzed. During this process, it was noted whether each new resource was adding any new data. Saturation was used as the criterion as to whether it was necessary to seek further resources. Saturation was defined as resources being redundant, in that no new data advanced the conceptual categories ( 24 , 25 ). Forty percentage of the resource data were second coded, and inter-rater reliability was calculated ( 26 ), with the protocol that a kappa <0.90 would lead to second coding of all data.

The 30 resources identified from Google were supplemented with a further 19 identified from Twitter or snowballing. These included the resources published by Public Health England, UK National Health Service, World Health Organization, United States Center for Disease Control and several mental health charities. A list of the resources is given in Table 1 . On close inspection, four of the resources identified from Google were excluded as they did not include novel guidance on mental health or wellbeing, and six of the resources identified from snowballing were also excluded for this reason. Analysis was conducted on 39 resources. No new themes or topics were identified at the end of the analysis of the identified resources, therefore no further sampling was conducted. Inter-rated reliability of kappa 0.94 was achieved for second coding of 40% of the resources.

Lists the organizations that produced the resources.

Table 2 provides a summary of the results, which are described in further detail below.

Content of COVID-19 mental health focused online resources.

Framing of the Situation, Impact, and Resource

The COVID-19 pandemic was mostly referred to as “COVID-19 outbreak” or simply as “COVID-19” or “coronavirus.” Almost all resources specifically named the situation, with the language of outbreak, virus name, pandemic or epidemic used. Just four resources did not use this language, instead referring to “lockdown,” “crisis,” or “social isolation.” Potentially stigmatizing language of “Wuhan virus” or “Chinese virus” were not seen.

The impact of the situation on psychological wellbeing and mental health typically included significant attempts to normalize. Resources described the situation as having an impact on everyone, emphasizing universality. Worry and stress were described as “natural,” “normal” and “understandable.” Many described that everyone would react differently. Some described examples of specific people's experiences, to exemplify potential reactions. Of the 39 inspected resources, nine did not offer normalization of psychological distress. Some of these were very brief resources, however four were resources, longer than a list of tips, from mental health charities. Most resources did not use diagnostic labels to describe people's experiences, and offer normalization of distress. Where diagnostic categories were used and where symptoms or difficulties were described, the focus was on anxiety.

Whilst resources described a range of potential emotional and psychological impacts, the majority focused on anxiety and its management, focusing on “worry,” “stress,” “anxiety,” “fear” and “uncertainty”.

The resources were published by a range of organizations, as show in Table 1 . The results reflect to some extent the geographical location of the authors, and cover international, national, and local sources, from governments, charities, businesses, and individuals. They are mostly lists of instructions, sometimes with text preceding these instructions. The intended aims or claims of what the resources could offer were commonly to “look after,” “help,” “support,” “take care,” “manage” and “protect.” No resource made claims to remove distress or treat.

Content of Resources

The resources offered a range of strategies, detailed in Table 2 . The majority of resources offered a list of tips or strategies. The resources then were frequently very brief, offering little detail on how to implement the suggested tips or strategies.

It was rare to see the likelihood of achieving these acknowledged, with just one resource explicitly suggesting “cut yourself some slack.” Managing expectations of oneself was rarely acknowledged. The majority of advice did not acknowledge the other challenges that people may be facing, including lack of time owing to caring responsibilities, ongoing work expectations and challenges, potential ill-health, financial stressors, and difficulties in managing how to obtain everyday items such as food.

Social support was most commonly suggested. Self-care, management of media usage, maintenance of activities, and use of cognitive strategies were all advised. Several resources included content on focusing on what one can control as a cognitive strategy. Arousal reduction and emotional expression were also offered. Less commonly offered were advice relating to managing personal relationships and maintaining or altering one's physical environment. Within the cognitive focused advice, several resources offer prompts to consider the positives or solve problems, without offering further guidance on how this can be achieved. Some suggested the situation be reframed as an opportunity. An emphasis on kindness and gratitude was also seen.

Comparison of Resource Coverage to Mental Health Impact

Data from the ONS observed an increase in depression in the general population from pre-pandemic levels of around 10 to 19% in June and November 2020, and 21% in January-March 2021 ( 20 ). These data relate to those aged 16 or more. Interestingly, depression was most common at 34% in the 16–29 year old age range (compared to just 10% in people aged at least 70 years). This age group are of course highly internet literate. For anxiety, in March-April 2020, at the very start of the pandemic in the UK and during a period of extreme uncertainty, 49.6% of people reported high anxiety ( 21 ). The mean score of the anxiety measure was 5.2/10, up from 3.0/10 at the end of 2019. Data from July-August 2021 show on ongoing higher than pre-pandemic level of depression, being 17% (compared to pre-pandemic levels of 10%) ( 22 ).

Analysis examined the framing and content of a variety of online resources aiming to support psychological wellbeing. The epidemic was referred to without using stigmatizing language for either the virus or the impact on mental wellbeing. Normalizing and contextualizing distress during a distressing situation is vital, as it can offer a sense of universality and not stigmatize what is understandable during this time of threat. Resources were found to be stating aims to help support mental wellbeing, which is an appropriate aim as these mass, online resources are not to replace therapy or interventions to treat mental health problems.

Overall the content of interventions could be broadly construed as including elements of cognitive-behavioral therapies, including elements of mindfulness and acceptance commitment approaches, such as thought defusion ( 27 ). The focus on maintaining activity and social contact address likely stressors of the situation. Practical strategies are frequently offered. These strategies can address both low mood and anxiety related difficulties as they form elements of behavioral activation ( 28 ). Cognitive intervention is overall less frequently offered, and again tends to focus on anxious thinking, however could be equally well applied to depressive rumination, for example techniques of reframing and defusing from thoughts may be useful for both types of difficulties ( 29 ). Control is a theme in nearly half the resources, typically with advice to focus on what you can control. This is highly relevant as appropriate control beliefs are linked to reduced anxiety ( 16 ). This is particularly important messaging to avoid fatalism, which may reduce protective health behaviors of handwashing and social distancing ( 15 ).

The data concerning the impact of the pandemic show a large increase in both depression and anxiety. A clear recommendation results from comparing this to the content of the resources. The majority of resources focused on anxiety related symptoms and strategies. It is vital ensure impact on depressive symptoms is also acknowledged, given preliminary findings of increased depression ( 8 ).

A number of additional recommendations arise from the findings. First, most resources were didactic information giving. These could usefully be augmented with guided activities, to increase engagement with the resources' advice. This could include links to activities to support people to problem solve, cognitively reframe, set goals and so on. Most people are likely to be able to spontaneously do these activities, however some may require further support. Second, the pandemic events are outside of personal control, potentially leading feelings of helplessness, which are linked to low mood and depression ( 30 ). More attention should be given in resources to reducing rumination, replacing both anxious and low-mood related thoughts with alternatives or defusing from thoughts. Third, the resources' content could potentially feel overwhelming itself: a single parent, struggling to manage a toddler at home and continue to work, experiencing financial difficulties and stress when trying to acquire food shopping may find a list suggesting great social contact and doing creative activities somewhat at odds with their personal experience. Noting the context is vital and recognizing this may be having a very significant impact may help some to feel more understood and the resources to feel more relevant. Fourth, and related to the previous recommendation, it may be important to include guidance on adapting ones' expectations of oneself. The current challenges may activate core beliefs about being not good enough, which may be further triggered by lists of activities to do. This could be simply acknowledging a need to shift one's expectations from normal level of achievement or activity to abnormal ones, given the abnormal situation. Fifth, resources could continue to emphasis the rationale of the restrictions to movement, emphasizing the shared experience; social cohesion and resilience; and collective responsibility to act, in the collective good ( 31 , 32 ).

Finally, two areas were commonly omitted. First, the importance of managing personal relationships was rarely mentioned. It is important to note that loneliness was observed in 27% of a UK sample in March-April 2020 ( 33 ). Addressing the maintenance of relationships during times of protective measures that restrict social interaction is then vital. In addition to the significant risk of increased domestic violence, the stress of confinement may affect many relationships within the home. Raising this issue and inclusion of basic guidance on communication skills may be beneficial ( 34 ). Second, greater awareness raising of the potential impact on mental wellbeing of home environment may be beneficial, particularly as this is an area over which many people will have some control ( 35 ).

Limitations

This study is limited by its sampling. Only resources written in English were included, limiting its coverage and generalisability, however resources from a range of sources were included. The limitation to resources written in English does also limit the underlying cultural assumptions and approaches offered. Only resources relating to a general population were included, advice for health-workers and children must also be made available to the highest standard. It is not possible to review the resources against existing evidence standards, as no such standards exist; rather we sought to summarize the content, consider its empirical basis, and highlight areas of omission.

In conclusion, the resources relating to public mental health addressed important topics. Supportive, comprehensive, empirically grounded resources can help maintain mental wellbeing for many, thus reducing future impact on mental health services, allowing them to focus on those with existing difficulties and high levels of distress. Such resources must address not only anxiety, but also depression. Given the high risk of future pandemics, the recommendations may inform future mass mental health support interventions.

Data Availability Statement

Author contributions.

FM conceived of the study, coded data, and co-drafted the manuscript. TO gave methodological advice, coded data, co-drafted, and edited the manuscript. All authors contributed to the article and approved the submitted version.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's Note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

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You're going on a vacation to Italy next month, and you want to learn some basic Italian for getting around while there. You decided to try Duolingo.

• Please begin by downloading the app to your device.
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• Now go all the way through the rest of the first lesson, describing your thoughts as you go.
• Get your profile set up, then view your account page. What information and options are there? Do you feel that these are useful? Why or why not?
• After a week in Italy, you're going to spend a few days in Austria. How would you take German lessons on Duolingo?
• What other languages does the app offer? Do any of them interest you?

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It would be cool if there were some feature that could allow two learners studying the same language to take lessons together. I imagine that their screens would be synced and they could go through lessons together and chat along the way.

Overall, the app was very intuitive to use and visually appealing. I also liked the option to connect with others.

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What is Thematic Analysis in Qualitative Research? Definition, Process and Examples and Best Practices

What is Thematic Analysis in Qualitative Research?

Thematic analysis is a widely used method in qualitative research that involves identifying, analyzing, and reporting patterns, themes, or recurring ideas within a dataset. It is a flexible and systematic approach that allows researchers to uncover meaningful insights and understandings from the rich, often narrative data collected in qualitative studies. The goal of thematic analysis is to distill and organize the data into coherent themes that capture the essence of participants’ experiences, perceptions, or perspectives.

The first step in thematic analysis involves familiarizing oneself with the data through a process known as data immersion. Researchers immerse themselves in the raw data, which can include transcripts from interviews, focus group discussions, or any other qualitative material. This immersion helps researchers gain a holistic understanding of the content and identify initial patterns or notable observations.

Once familiarized with the data, the researcher generates initial codes, which are labels or tags attached to segments of the data that represent specific ideas, concepts, or recurring patterns. These codes are then organized into potential themes. Thematic analysis emphasizes a bottom-up, data-driven approach, allowing themes to emerge organically from the data rather than being imposed based on preconceived notions. Through an iterative process of reviewing, refining, and defining themes, researchers aim to create a coherent and internally consistent representation of the underlying patterns within the dataset.

Finally, thematic analysis involves interpreting and reporting the identified themes in a way that captures the essence of the participants’ experiences or perspectives. This process often involves selecting representative quotes or excerpts from the data to illustrate each theme, providing a rich and vivid portrayal of the findings. Thematic analysis is valued for its adaptability across various research designs and its ability to offer valuable insights into the complexities of qualitative data, making it a widely employed method in the social sciences.

Key Characteristics of Thematic Analysis in Qualitative Research

Thematic analysis is a qualitative research method characterized by several key features that guide the systematic examination and interpretation of textual data. These characteristics contribute to the method’s flexibility and applicability across diverse research contexts. Here are key characteristics of thematic analysis:

• Thematic analysis is primarily inductive, meaning that it allows themes to emerge from the data rather than imposing pre-existing theoretical frameworks. It is driven by the participants’ voices and experiences, emphasizing a bottom-up process that captures the richness of the data.
• Thematic analysis is known for its flexibility, making it applicable to various research questions, study designs, and data types. Researchers can tailor the approach to suit the specific needs of their study, whether it involves interviews, focus groups, or other qualitative data sources.
• Before identifying themes, researchers engage in a process of data immersion and familiarization. This involves a thorough review of the raw data to gain a deep understanding of its content. By immersing themselves in the data, researchers can identify patterns, nuances, and potential areas of interest.
• Thematic analysis involves the systematic coding of data, where researchers assign labels or codes to segments of text representing specific ideas or patterns. These codes are then organized into potential themes. The process is iterative, allowing for constant refinement and development of themes as the analysis progresses.
• Thematic analysis encourages reflexivity, prompting researchers to be aware of their own perspectives, biases, and potential influences on the interpretation of data. This self-awareness contributes to transparency and helps ensure that the analysis is grounded in the participants’ experiences rather than the researchers’ preconceptions.
• Themes in thematic analysis are often emergent, arising from the data rather than being predetermined. Additionally, thematic analysis can involve hierarchical organization of themes, where overarching themes encompass sub-themes, providing a layered and nuanced understanding of the data.
• Transparency is a key characteristic of thematic analysis. Researchers are encouraged to document and report the decision-making process, including how themes were identified, refined, and interpreted. This documentation enhances the rigor and credibility of the research.
• Thematic analysis aims to provide a rich and contextual presentation of the findings. This often involves using participants’ own words or representative quotes to illustrate each theme, allowing readers to connect with the experiences and perspectives being portrayed.
• Thematic analysis is an iterative process that involves multiple rounds of coding, theme generation, and refinement. Researchers continuously revisit the data, codes, and themes to ensure a comprehensive and accurate representation of the dataset.
• Thematic analysis is well-suited for a wide range of research questions, making it applicable in disciplines such as psychology, sociology, education, and health sciences. Its adaptability allows researchers to explore diverse phenomena and capture the complexity of human experiences.

These key characteristics collectively make thematic analysis a versatile and robust qualitative research method, providing researchers with a systematic yet adaptable approach for exploring and understanding the nuances embedded in textual data.

Types of Thematic Analysis in Qualitative Research with Examples

Thematic analysis is a flexible qualitative research method, and there are different types or approaches within thematic analysis. Here are three commonly recognized types with corresponding definitions and examples:

• Inductive thematic analysis involves a bottom-up approach where themes emerge directly from the data. Researchers refrain from using pre-existing theoretical frameworks or prior knowledge to guide the analysis, allowing patterns and themes to surface organically through close examination of the data.
• Example: In a study exploring the experiences of cancer survivors, an inductive approach might involve thoroughly reading interview transcripts, coding segments that stand out, and gradually identifying themes that encapsulate common experiences such as resilience, support systems, and coping strategies.
• Deductive thematic analysis takes a more top-down approach, utilizing pre-existing theories or frameworks to guide the identification and interpretation of themes. Researchers start with predefined categories or concepts and then analyze the data with these predetermined themes in mind.
• Example: In a research project informed by a specific psychological theory, such as Maslow’s Hierarchy of Needs, deductive thematic analysis might involve coding data according to categories derived from Maslow’s theory, such as physiological needs, safety, belongingness, esteem, and self-actualization.
• Framework thematic analysis involves combining elements of both inductive and deductive approaches. Researchers begin with a broad coding framework based on the research question or existing literature but remain open to emergent themes as they delve into the data. The initial framework provides a structure that is flexible enough to evolve through the analysis process.
• Example: In a study examining attitudes toward technology use in education, a framework thematic analysis might start with predefined categories like access, pedagogical integration, and student engagement, but also allow for new themes to emerge during the coding process based on unanticipated insights from the participants.
• Critical thematic analysis goes beyond describing patterns in the data and aims to uncover power structures, social inequalities, and ideologies. It involves questioning assumptions, examining discourses, and exploring how language and representations may perpetuate or challenge existing power dynamics.
• Example: In a study on media representations of a marginalized community, critical thematic analysis might involve examining how specific language choices in news articles contribute to the stereotyping or marginalization of that community. Themes could include instances of linguistic bias, stigmatization, or resistance.
• Narrative thematic analysis focuses on the stories people tell and emphasizes the narrative structure of the data. It involves identifying key plot points, character development, and the ways in which individuals construct and convey meaning through storytelling.
• Example: In a research project exploring personal narratives of overcoming adversity, narrative thematic analysis might involve identifying themes related to the story arc, such as challenges faced, turning points, personal growth, and resolutions. This approach allows researchers to understand how individuals make sense of their experiences through storytelling.

These additional types of thematic analysis reflect the method’s adaptability to various research goals and theoretical orientations. Researchers can choose the type of thematic analysis that aligns with their research questions, epistemological stance, and the depth of analysis required to address the complexities inherent in qualitative data.

Best Practices for Thematic Analysis in Qualitative Research

Thematic analysis is a valuable qualitative research method, and employing best practices enhances the rigor, reliability, and validity of the study findings. Here are some best practices for conducting thematic analysis:

• Begin with well-defined research questions or objectives. Clearly articulate what you aim to explore, ensuring that your thematic analysis remains focused and purposeful.
• Develop a systematic and transparent process for conducting thematic analysis. This process should include distinct stages such as data familiarization, coding, theme generation, reviewing, and reporting. A systematic approach enhances the replicability of your study.
• Immerse yourself in the data to gain a deep understanding of its content. Read and re-read the data to identify patterns, recurring ideas, or potential themes. This initial data immersion phase is crucial for generating meaningful codes and themes.
• Conduct in-depth coding of the data. Code segments that capture meaningful concepts or patterns. Ensure that your coding captures both manifest (explicit) and latent (underlying) content in the data.
• Thematic analysis is an iterative process. Refine and revise codes and themes as you progress through the analysis. Regularly revisit the data to ensure that your emerging themes accurately reflect the complexity of the dataset.
• Be reflexive about your role as a researcher. Acknowledge your preconceptions, biases, and potential influence on the analysis. Document your reflexivity in research notes to enhance transparency.
• Establish clear coding guidelines and maintain consistency in coding across the entire dataset. Consistency enhances the reliability of your analysis, especially if multiple researchers are involved.
• Pay attention to negative or deviant cases that may challenge emerging themes. Ensure that your analysis accounts for variations and exceptions in the data, adding nuance to your interpretations.
• Collaboration can improve the credibility of thematic analysis. If possible, involve other researchers in the process, and seek feedback from peers or experts in qualitative research. This external perspective can enhance the robustness of your findings.
• Maintain a comprehensive audit trail documenting your decision-making processes, from coding to theme generation. This trail serves as a record of your analytical choices and enhances the transparency and trustworthiness of your study.
• Consider using qualitative data analysis software to organize and manage your data. Software tools such as NVivo, MAXQDA, or ATLAS.ti can facilitate efficient coding, retrieval, and organization of thematic data.
• Adhere to ethical standards throughout the research process. Obtain informed consent, protect participant confidentiality, and consider the ethical implications of your analysis, especially when exploring sensitive topics.

By adhering to these best practices, researchers can conduct a robust thematic analysis that contributes meaningful insights to the qualitative research literature. These practices enhance the reliability, validity, and transparency of the research process and findings.

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Conducting qualitative research in mental health: Thematic and content analyses

• M. Crowe , M. Inder , R. Porter
• Published in Australian and New Zealand… 21 April 2015
• Australian & New Zealand Journal of Psychiatry

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Published in Australian and New Zealand journal of psychiatry (Print) 2015

M. Crowe M. Inder R. Porter

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Open Access

Peer-reviewed

Research Article

Opportunities and challenges of using a health information system in adolescent health management: A qualitative study of healthcare providers’ perspectives in the West Bank, occupied Palestinian territory

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

* E-mail: [email protected]

Affiliations Institute Community and Public Health, Birzeit University, Birzeit, West Bank, Palestine, School of Medicine, University of Limerick, Limerick, Ireland

Roles Conceptualization, Funding acquisition, Supervision, Writing – review & editing

Affiliation Institute Community and Public Health, Birzeit University, Birzeit, West Bank, Palestine

Roles Conceptualization, Supervision, Writing – review & editing

Affiliation School of Medicine, University of Limerick, Limerick, Ireland

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

Affiliation Public Health Program, University of Birmingham, Dubai, United Arab Emirates

• Aisha Shalash, 
• Niveen Abu-Rmeileh, 
• Dervla Kelly, 
• Khalifa Elmusharaf

• Published: August 22, 2024
• https://doi.org/10.1371/journal.pone.0307207
• Reader Comments

Adolescents are a critical demographic facing unique health challenges who are further impacted in humanitarian settings. This article focuses on the urgent need for a structured health information system (HIS) to address the gaps in data availability and evidence-based interventions for adolescent health. The study aims to identify opportunities and challenges in utilizing the HIS to enhance adolescent health in the West Bank by gathering insights from healthcare providers.

Semi-structured key informant interviews were conducted with participants involved in the HIS regarding adolescent health in the West Bank. They were selected by purposive sampling. Nineteen interviews were conducted between July and October 2022, and thematic analysis was carried out using MAXQDA software.

The opportunities identified were the small-scale victories the participants described in building the HIS for adolescent health. These included institutional and individual capacity building, digitalizing parts of the HIS, connection fragmentation of adolescent health activities, multi-sectoral collaboration, reorienting services based on health information, working with limited resources, enhancing community engagement to encourage ownership and active participation, and taking strategic actions for adolescents for information. The challenges were the high workload of staff, lack of health information specialists, limited resources, lack of a unified system in data collection, lack of data on essential indicators, data quality, data sharing, and data sources and use.

This study showed the potential of the HIS with capacity building, digitization, and collaborative initiatives; it also suffers from issues like staff shortages, non-standardized data collection, and insufficient data for essential indicators. To maximize the impact of the HIS, urgent attention to staff shortages through comprehensive training programs, standardization of data collection systems, and development of a unified core indicator list for adolescent health is recommended. Embracing these measures will allow the HIS to provide evidence-based adolescent health programs, even in resource-constrained and complex humanitarian settings.

Citation: Shalash A, Abu-Rmeileh N, Kelly D, Elmusharaf K (2024) Opportunities and challenges of using a health information system in adolescent health management: A qualitative study of healthcare providers’ perspectives in the West Bank, occupied Palestinian territory. PLoS ONE 19(8): e0307207. https://doi.org/10.1371/journal.pone.0307207

Editor: Deema Jaber, Zarqa University, JORDAN

Received: October 23, 2023; Accepted: July 2, 2024; Published: August 22, 2024

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

Data Availability: No - some restrictions will apply; Data are available from the “Data Access Committee at ICPH-BZU, represented by the ICPH Ethics Review Committee (contact via [email protected] ) and the corresponding author" for researchers who meet the criteria for access to confidential data. Data cannot be shared publicly because of the need to keep all interviews anonymous. Due to the participants being government employees, and holding other important positions in the country, they would only agree to the interview if their identity was kept anonymous.

Funding: This work was funded by a grant from the International Development Research Centre (IDRC). NA was the author that received the award, grant number 109011-001. https://idrc-crdi.ca/en Funder did not play any role in study design, data collection and analysis, decision or publish or preparation of the manuscript.

Competing interests: The authors declared that no competing interests exist.

Abbreviations: DHIS2, District Health Information Software 2; HIS, Health Information System; IT, Information Technology; NGOs, Non-Governmental Organizations; PCBS, Palestinian Central Bureau of Statistics; PMoH, Palestinian Ministry of Health; SRH, Sexual Reproductive Health; UNFPA, United Nations Population Fund; WHO, World Health Organization

Introduction

Adolescents, defined by the World Health Organization (WHO) as individuals aged 10 to 19, represent the link between childhood and adulthood, experiencing unique health and well-being challenges dissimilar from those of adults [ 1 ]. This transitional period includes the onset of puberty and other significant developmental milestones, such as experiencing menarche [ 2 ]. Approximately 90% of the global adolescent population resides in low- and middle-income countries, where they often bear a disproportionate burden of health-related issues compared to their counterparts elsewhere [ 3 , 4 ]. Some of the challenges they face are risky behaviors, violence, substance abuse, and cyberbullying [ 5 ].

Now, imagine the compounding impact of these challenges and other challenges that occur in humanitarian settings. Humanitarian settings are man-made conflicts, civil wars, or natural disasters where the affected populations cannot cope without external assistance [ 6 ]. In humanitarian settings, you see some of the same risk factors, such as substance abuse and violence, but are also burdened with factors such as infectious diseases, mental health issues, lack of access to education, displacement, crowding, and limited preventative healthcare [ 7 ]. This is currently being seen in the Gaza strip, as the war has allowed for limited preventative health care, lack of access to education, displacement, and crowding for the majority of the population [ 8 ]. What compounds the issue is the scarcity of comprehensive data and indicators to track their health status and needs [ 6 ]. The unpredictable nature of adolescent needs, resource limitations, increased internal and external migration, and the proliferation of humanitarian organizations in these settings further exacerbate the situation [ 9 ].

As more organizations intervene, implementing various programs and policies while collecting data, a structured and unified health information system (HIS) becomes vital. An HIS is an integral part of a comprehensive health system focused on collecting, processing, and reporting data to inform policy-making, programs, interventions, and research [ 10 ]. Such a system is essential for ensuring data quality and utilization [ 11 ]. Reliably collected data has been vital in revealing critical insights, such as the fact that most adolescent deaths are due to road traffic injuries [ 12 ]. However, it’s critical to acknowledge that previous interventions in adolescent health have often been of limited duration and quality, particularly in the domains of mental health, immunizations, and substance abuse. Moreover, many of these interventions have been predominantly conducted in high-income countries, making their applicability to marginalized settings questionable [ 13 ]. Transitioning from the broader context of global HISs to the specific challenges faced in the West Bank, particularly within the realm of adolescent health, emphasizes the pressing need for targeted interventions and a comprehensive understanding of the healthcare landscape in this region. While adolescents globally face significant health challenges, those in the West Bank encounter unique difficulties due to prolonged conflict and political instability [ 14 ]. These conditions make common adolescent health issues harder to treat and complicate effective healthcare delivery [ 15 ].

Roughly 20% of the population of the West Bank are adolescents [ 16 ]. Despite some efforts to address these challenges, a comprehensive understanding of adolescent health in the West Bank, specifically in the context of a chronic humanitarian crisis, remains elusive [ 17 ]. There are available interventions for mental health, sexual and reproductive health, and nutrition, but data availability is not clear to show these interventions are what is needed. This shows the urgent need for a structured HIS to address the gaps in data availability and evidence-based interventions for adolescent health in similar settings. Against the backdrop of this chronic humanitarian crisis, our study seeks to identify healthcare providers’ perspectives on the opportunities and challenges in leveraging the HIS to enhance adolescent health and services in the West Bank. Healthcare providers witness firsthand the complexities and barriers in delivering care [ 18 ]. Therefore, their insights are critical for developing an HIS that is comprehensive and responsive to adolescent health needs in the West Bank. Their perspective will allow us to determine the successes and barriers of the HIS based on their experiences. They can effectively inform of the challenges and barriers to delivering health services to adolescents. This includes issues related to data collection, coordination among different healthcare providers, and integrating HIS into routine practices. Their experiences and insights are invaluable for informing evidence-based policies and strategies tailored to the region’s needs. It will allow us to look beyond theoretical HIS improvements and recommend practical solutions for implementation. To our knowledge, this is the first study to consider adolescent health when looking at the HIS in the West Bank. This study aims to examine healthcare providers’ perspectives on the HIS in the West Bank and identify critical gaps in our current understanding of the adolescent HIS.

The research employed a qualitative content analysis approach, conducting semi-structured key informant interviews with participants involved in the HIS regarding adolescent health and services in the West Bank.

Context the West Bank

This study unfolds in the complex context of the West Bank, a region within the occupied Palestinian territory. Here, the Palestinian healthcare system is composed of four significant providers: the Palestinian Ministry of Health (PMoH), the United Nations Relief and Works Agency for Palestine Refugees (UNRWA), national and international non-governmental organizations (NGOs), and the private sector [ 19 ]. The PMoH plays a central role as the primary healthcare provider and data aggregator, employing the Health Management Information System Avicenna in health facilities and District Health Information Software 2 (DHIS2) in primary healthcare clinics across the country [ 20 , 21 ]. Each provider has their own HIS and does not communicate with each other, leaving the HIS fragmented. Informed decision-making within the PMoH heavily relies on data collected from population-based surveys like the Multiple Indicator Cluster Survey (MICS) and surveys conducted by various NGOs operating in the region [ 22 ].

Mapping, sampling, and selecting key participants

Semi-structured key informant interviews were conducted with participants involved in the HIS regarding adolescent health and services in the West Bank. The researchers conducted a previous mapping of all organizations involved in adolescent health. Using this list, participants were selected by purposive sampling. They were directly approached if recognized for working in an organization known to serve adolescent health or known to be involved in the HIS of their organizations. Participants were chosen based on their expertise in HISs or experience working with adolescents. They were contacted by phone, and subsequent correspondence was sent by email. Interviews were done in the workplace of participants, and only researchers and participants were present at the time of the interviews.

Data collection

Semi-structured interview questions were adapted from three popular HIS assessment tools. These tools are the Performance of Routine Information System Management (PRISM) tools by MEASURE Evaluation [ 23 ], the Center for Disease Control (CDC) surveillance system guidelines [ 24 ], and the Health Metrics Network assessment tool [ 25 ]. Using these tools, all researchers built a topic-based interview guide: AS, NA, DK, and KE. It was built in English, translated into Arabic, and then back into English by two researchers, NA and KA, separately, fluent in both languages to ensure validity. The interview guide can be found in the S1 File . Interviews were recorded and conducted in Arabic or English, depending on the participant’s preference. The transcription was done in Arabic. AS conducted interviews; she is a current PhD candidate with a master’s degree in public health. Interviews were conducted until the researchers AS and KE felt information saturation was reached and no new information was generated from the last interviews.

Data analysis.

Thematic analysis [ 26 ] was used to analyze the interviews, and analysis was done in English. The analysis process was guided by an interview guide structured around key themes identified a priori, including resources, indicators, data quality, data dissemination and use, and information products. This guide served as a foundational framework for exploring the perspectives of healthcare providers on the HIS for adolescent health in the West Bank. Codes were systematically generated based on predetermined themes. Similar codes were grouped to form sub-themes. For instance, under the overarching theme of "resources," sub-themes emerged, such as "financial constraints" and "staffing challenges." The coding process was iterative, and it was done after each interview. This allowed for constantly refining the codebook as new insights and perspectives emerged. Questions in subsequent interviews were adjusted based on the evolving analysis to accommodate new insights and perspectives that emerged throughout the data analysis process. Two researchers, AS and KE, used MAXQDA software for the thematic analysis [ 27 ]. This software facilitated the organization, retrieval, and visualization of coded data, enhancing the analysis’s efficiency and transparency. MAXQDA enabled a systematic exploration of patterns and relationships within the data, contributing to the transparency of our analytical process. Regular team discussions were conducted to maintain reflexivity, and researchers’ thoughts and preconceptions were documented through journaling. Both researchers, AS and KE, brought distinct yet complementary backgrounds to the analysis. With prior experience in HISs in the West Bank, AS provided contextual insights, while KE’s expertise in qualitative research and HISs contributed to methodological rigor. Any discrepancies or disagreements in coding and theme identification were addressed through discussion and consensus among the research team. Additionally, COREQ, the consolidated criteria for reporting qualitative studies, guided reporting findings, can be found as S2 File [ 28 ].

Ethical considerations

This study was approved by the Ethical Research Committee of the Institute of Community and Public Health at Birzeit University, reference number 2022 ((4–1)). Before participating, every participant provided oral consent, understanding that they had the right to discontinue the interview at any point. Interview recordings commenced only after obtaining participant consent, and participants could halt the recording at any time if necessary. Furthermore, participants were assured that their interviews would remain confidential to the greatest extent possible, safeguarding their anonymity.

Nineteen interviews were conducted between July 2022 and October 2022, and the length of the interviews ranged from 22 to 94 minutes. There were seven males and 12 females; nine were government employees, five worked for local NGOs, and five were from international NGOs. Health providers, directors, statisticians, data collectors, and project managers were some of the interviewees’ positions. Due to anonymity, we could not identify exactly which organization and position the participant is affiliated with, other than the categorization of governmental, local non-governmental, and international non-governmental organizations and years of experience. This can be found in Table 1 .

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https://doi.org/10.1371/journal.pone.0307207.t001

Table 1 describes each participant’s interview length, their affiliation, and years of experience.

Participants identified and embraced many opportunities to explore the country’s HIS for adolescent health. These opportunities represented crucial pathways towards achieving a more robust and effective system. This section delved into the eight key opportunities they described. These encompassed capacity building, streamlining, and digitizing the HIS, fostering collaboration across sectors, reshaping services based on health information, resourceful collaboration, empowering community engagement, particularly among adolescents, and implementing strategic actions for informed adolescent health. While these opportunities paved the way for transformative change, it’s also essential to acknowledge the HIS’s significant challenges, including resource constraints, data quality issues, and the imperative need for more comprehensive data sharing and utilization. The results explored the potential for progress and the challenges in strengthening the adolescent HIS.

Opportunities

1. institutional and individual capacity building..

Many participants expressed great confidence in the surveys the Palestinian Central Bureau of Statistics (PCBS) produced. They felt they were experienced in data collection and provided capacity building in the training and fieldwork supervision. They described that this helped in the institutional capacity building of a solid body trained in data collection and could provide quality data.

“The international consultant came here locally to the country and conducted the training. Many of them are in the piloting stage, testing the tools themselves, modifying them, etc. So, again, this was joint work in which we were heavily engaged. So, we are confident in the results of this survey. We supported capacity building in the training and fieldwork supervision to ensure the quality of the data being gathered. To ensure that we have a harmonized understanding of the tool, the questions, and the data collection process, and we support the supervision during the data collection period, we jointly work with them on the data cleaning and analysis. We work side by side with PCBS.”–Participant ID #16

As it is essential to provide institutional capacity building, the participants described that individual capacity building was also given. Many different organizations were sure to train their field workers and data collectors. They also monitored the data entry to ensure data quality. They described that, for the most part, the collected surveys were of good data quality.

“We have field workers that are always in the field. They are always available… our field workers are trained beforehand. Then, we have project coordinators. They usually have one program manager and the program manager to the director to the unit director.” Participant ID #3

2. Digitalization of HIS.

In the digitalization age, many participants described the government piloted digital records for both primary and secondary health facilities. This made it easier for patients and healthcare providers to provide better care and ensured that the needed information was available. The governmental participants described that the primary health care system used software called DHIS2 and Avicenna. Participants also mentioned that non-governmental organizations also used this software.

“We have a national software and database for governmental and non-governmental hospitals, and they use the same system (Avicenna). This has made lives easier and made it easier for patients. They don’t have to carry their file to every doctor they see to ask them why they are here. Also, sometimes doctors write things that patients don’t understand, so it’s easier for the doctor to look at the patient’s history.” Participant ID #1

3. Connecting fragmentation.

With the various types of healthcare providers and organizations working in adolescent health, it was tough to keep track of all the different activities, programs, and interventions offered in the country. Many discussed being part of the Palestinian Adolescent Health Coalition. They felt that the coalition was a great way to keep informed on the different adolescent health activities and help lessen the duplication of services. It also encouraged multi-sectoral collaboration as it brought together all the partners in adolescent health.

“In 2018, we decided to see what institutions are working with or on adolescents. It was not efficient to see such hard work so scattered. So, we started and built the Palestinian Adolescent Health Coalition. Right now, there are more than 33 organizations, some of them are local NGOs that work with youth from Sharek to Juzoor to World Vision, as well as international organizations such as Save the Children, Y-peer, Tomorrow Youth in Nablus, UNICEF, WHO in Ramallah the institute-would like to join, the PMoH, the Ministry of Education all of us are in one hub. We meet regularly and hold an annual conference each year.” Participant ID #3

4. Reorienting services to overcome challenges.

When asked about the availability of adolescent health data, a few participants described the lack of data due to the lack of adolescent health services. They described the opening and closing of a youth-friendly clinic in Hebron. In 2012, the PMoH formed a youth-friendly clinic in Hebron. After some time, the clinic closed. When asked about examples of what kind of clinics worked for adolescents, it was found that most family services operated in schools or universities provide adolescent health services. Many described the move of family services to their primary healthcare clinics by the PMoH. This way, the entire family could go to one place and receive the needed services. One of the participants was involved in creating the manual to address adolescent and youth health and hoped that, with this move, more adolescent health data could be collected.

“A youth-friendly clinic was started, which did not work because everyone who went there obviously went to this. We thought this would not work; it should be integrated into the system. You go to the clinic and see someone you know; maybe he is there because his stomach hurts or his throat or he has something he wants to talk about. We made the job aid and manual that tackles everything related to youth health… We trained doctors, nurses, and midwives. We trained them in the manual and are now integrating it within primary healthcare so we can reach adolescents everywhere.” Participant ID #12

Many described the hesitation of adolescents seeking health information from a reliable source or healthcare for fear of lack of privacy. Two participants described the creation of an app for adolescents to ask a doctor any question they wanted confidentially. They could write and ask about anything and receive a reliable response from the doctor in 24 hours. With this application, they could track topics that were asked, who used the app, and the gender/age of participants, but no identifying information of who asked the question. When asked about the health data retrieved from this app, they said it had yet to be analyzed.

5. Smart collaboration to work with limited resources.

Another opportunity for success was the identification of collaboration to work with limited resources. Being in a humanitarian country, funds were often limited and donor-based. One of the participants identified the need for adolescent health data. They found it was best to use the Global School Health Survey to collect adolescent health data but did not have the human resources or financial backing to collect the needed data. They were able to collaborate with other organizations in adolescent health, using their staff to administer the survey in schools, requiring minimal financing.

“By working with others and using their staff to administer the survey in schools, it will not cost much to collect the data.” Participant ID #11

6. Empowerment of organizational program ownership.

A few of the participants not working in the governmental sector addressed the need to include the governmental sector in any new program or intervention they hoped to launch. They felt that allowing the governmental sector to be a part of the planning and implementation of programs would help the programs and interventions succeed. This gave the government ownership of the programs for sustainability purposes.

“It is important for the national partners to be the ones that implement our programs for sustainability.” Participant ID #6

“We work with our partners to include the government as much as possible to help implement programs.” Participant ID #5

a . Empowering adolescents . Three of the participants described using adolescents and youth in what they stated was peer-to-peer learning. This was part of an international program called Y-peer. Knowing that Palestine’s context differed from other areas, they were sure to tread lightly in an effort not to offend cultural norms. Adolescents were trained by their peers in suggested topics such as gender roles, sexual health, and gender-based violence. After this training, they became part of the mobile clinics where they would use different games to spread awareness.

“Members of the network joined after specialized training. They become a part of the mobile clinics funded by the United Nations Population Fund (UNFPA) in partnership with the Palestinian Medical Relief Society. They are a part of the mobile clinics… They can even do recreational activities for children there. In 2021, we did a workshop for adolescents. We transformed traditional games such as Monopoly and Snake and Ladders and used them to spread awareness about sexual and reproductive health.” Participant ID #17

7. Strategic actions for adolescents for information.

a . Forming a national strategy for adolescent health . Many participants described the necessity of forming the Department of School and Adolescent and Youth Health by the PMoH. They also described that they took part in drafting the national strategy. The department’s vision, mission, and primary objectives were written for the next five years.

“The original idea was established in 2019. After three years of working on the strategy with members of the Ministry of Health and outside partners, we recently launched the strategy (July 2022). After the launching, the Department of School and Adolescent and Youth Health was formed.” Participant ID #3 “We contributed to developing the Adolescent Health Strategy jointly with UNFPA , the Minister of Health , and other organizations . And now , we look forward to our new program cycle to sit together with the Ministry and other partners . The next priority is that we should all know what to contribute to . ” Participant ID #12

b . Addressing adolescent needs . A few of the participants working in NGOs described the establishment of the Department of School and Adolescent Health as what paved the way for other non-governmental and civil society organizations to review their mandates and include the adolescent age group as one of their priorities in some of their programs, especially regarding sexual and reproductive health. They found that adolescents sought certain information and formed certain behaviors and beliefs before they became adults.

“Originally, our projects were geared towards youth. Recently, it has been changed to adolescents and youth.” Participant ID #17 “Our organization’s mandate looks at youth (18–35). One of the projects we are working on is sexual reproductive health (SRH). We did some baseline surveys and research, and we found that we needed to incorporate the ages of (14–18). This age group is going through puberty in schools and has access to reliable SRH information. On this basis, we included them in our SRH project.” Participant ID #18 “We started working with ages under 18 because we found that most negative behaviors and beliefs are formed before the age of 18 , and we have a chance of changing these behaviors and beliefs while they are younger . ” Participant ID #6

Although the HIS in the West Bank has seen many improvements regarding adolescent health, it has also faced many challenges. Challenges included the high workload of staff, lack of health information specialists, limited resources, not a unified system in data collection, and lack of data on essential indicators, data quality, data sharing, and data sources and use.

1. Staff shortage.

Challenges were found in the high workload of staff, lack of health information specialists, lack of data on specific indicators, and incomplete data. The HIS was not given the attention that was needed. Many participants addressed the lack of staff for specific informational needs. For example, when something is not digital, an employee must enter the data later. One organization saw the need for an employee to run the HIS, but it was difficult to justify this need with a donor because it was donor-based. In the Ministry of Health, the health information department, which was in charge of all of the Ministry’s data in the West Bank, had only twelve employees.

“ I wish there was a person for data entry. We don’t have a person responsible, and we have so much information. This is a missing loop; with all this information and the research we made, we should have a huge database, but we can’t bring someone. We are project-based. Because I am working on that project and still need help with other projects. It is very hard to convince a donor that I need someone to create the database and do data entry, but I think this is needed because all the work we do gets missed.” Participant ID #3

2. Lack of health information specialists.

One of the participants who had experience working in HISs revealed that one of the biggest problems faced by human resources was the lack of specialization in HISs in the country. Due to the lack of specialization, employees were working in areas where they were not entirely familiar with what the job exactly entailed. It was clarified there was this misunderstanding: when you refer to information systems, it was automatically equivalated to information technology (IT), when these are two completely different things. Whenever training was offered in HISs, management sent someone who worked in the IT department.

“We do not focus on the specialization in information systems. When you go to the health statistics department in the Ministry of Health and find that the people who work there are not specialized in information systems but specialized in IT, there is a problem. It is also a problem when the person in charge doesn’t know that information systems are not equivalent to IT.” Participant ID #1

3. Resources.

a . Poor internet connectivity . The internet was a significant resource in moving from paper records to electronic records. Some participants referred to the lack of internet in some rural areas as making it harder to digitalize the HIS. After collecting information, the employee was required to input the data into the electronic system later. The lack of internet has been addressed but has yet to be resolved.

“There are 50–60 primary health clinics that are not digitalized because of connectivity to the internet. These are in Area C and do not have Jawwal or Ooreedo connections (cell towers). At my last meeting with the Ministry of Communication, they tried to fix the problem because there are schools with the same issues, and we are still waiting.” Participant ID #1

4. Not a unified system for data collection.

Although the governmental sector was able to digitalize both the primary and secondary health facilities, they could not use the same data collection system; making it harder for them to be connected in a unified system. The primary health care, limited to reproductive health, used DHIS2, while the hospital used Avicenna medical software. They were currently working on how they would be able to unify them. Also, due to poor internet connectivity, paper-based reports and files were still being used.

“Having one harmonized unified system within the Ministry itself has been a challenge, and so there are a lot of interventions from WHO, for instance, from our side, and from other partners regarding improving the HIS.” Participant ID #16

5. Indicators.

a . Input and outcome compared to impact indicators . Several participants clarified that input indicators usually could be found when indicators were collected. They described having information for indicators such as the number of adolescents who received services, the prevalence of anemia, and obesity. They defined impact indicators as the indicators that give you the information picture of the situation. They acknowledged the importance of having impact indicators, which they knew they needed to collect.

“We are trying to move towards impact-based indicators more than output or outcomes indicators because this widens our overall picture. Many times, we face difficulties in catching or not easy to track the impact (of our programs). This is not something that is easy; it has caused us to put different indicators into one.” Participant ID #2

b . Unified indicators for adolescent health . Due to adolescent health being a newer area of concern, many of the participants were unsure of the indicators that they should be collecting. There was a consensus on the recommendation of a unified core indicator list. This list should be agreed upon among the organizations that work in adolescent health. It would help the organizations build their future programs or interventions and provide a way to measure and monitor success as well.

“We need to prioritize which indicators we focus on, which ones are more relevant, and to publicize it to all organizations. This will help us design new projects, interventions, programs, and so on. To refer to these indicators and see that they are the most relevant to the Palestinian context. These (indicators) are more relevant to SDGs, and to the future interventions we want to make, we can unify them to all the organizations. Participant ID #2

c . Lack of data for essential indicators . Most of the participants agreed that limited data was available regarding adolescent health. They agreed that this included the lack of data for essential indicators such as child labor indicators, disability, and mental health such as depression and anxiety. Limited data caused a lack of focus on these areas, resulting in insufficient programs for battling adolescents who dropped out of school and joined the labor force.

“Learning of employment indicators would also be important to be measured and collected. It will influence our schools’ policies, maybe for the higher education system in Palestine. It would, as I said, influence me without labor laws in Palestine, etcetera, and I cannot deny that adolescents are dropping out of school and joining the labor force. Unfortunately, without necessarily the correct and healthy safe environment for them to work and that’s why we for instance, we are not focusing maybe enough on child labor in Palestine as we lack information on what is the size of adolescents in the labor force, for instance, in Palestine.” Participant ID #16

6. Data quality.

Although the population-based surveys administered showed good data quality, there was a consensus that the data quality of hospital and primary health care records overall was not the best. One of the participants described it as hit or miss, unsure of the data quality. The data quality was thought to be because of the lack of monitoring of the data collection, resulting in incomplete or inaccurate data.

More than one participant mentioned one of the main challenges of using data from routine data was the consistency of incomplete data. One of the participants described the inability to use the collected information for research.

“Once, I assessed the emergency rooms with the World Bank. I needed to take information from Avicenna; it’s horrible; you can’t get anything out of it, and they (health providers) barely enter anything, even when they enter, whatever they enter is for the sake of filling in text.” Participant ID #14

Another participant described in reviewing files gave an example of some errors viewed in the available data.

“ When reviewing a cause of death, I noticed they had put a cause of death that was associated with females when his name was X, and he was 72 years old. We had to open the patient’s record to make sure of the cause of death.” Participant ID #11

Technical, human, and system errors like this were common, and it took more resources than available to ensure the data was correct and complete.

7. Data sharing.

When asked about data sharing, many described the lack of a data-sharing system. All participants felt data sharing was essential but understood it was almost nonexistent. They also agreed that the PMoH should take the lead in formalizing a data-sharing system requiring any organization that provides health services to share its data with the PMoH.

“We don’t mind sharing the data, but we don’t have the database, we don’t mind sharing anything, but we don’t have the database or the person that can be not based on a project.” Participant ID #3

Three participants mentioned data sharing was problematic because organizations did not truly understand data ownership. They went on to discuss that it did not mean that you should collect the data and put it away under lock and key and not share it with anyone; it means you are the owners, and you must make sure the data is as accurate as possible, and it is used to be representative of the situation and proper credit for data collection is assigned.

“We don’t have a problem with data sharing, but we have a problem with publishing our data without our knowledge or permission. We have to know what is published because, unfortunately, from our experience, we have seen the fabrication of data, so we must be aware of the data and results that come from us.” Participant ID #14 “I am not sure why more data is not shared; maybe every organization in their thinking and point of view (the data) should come out in their name . ” Participant ID #9

8. Data sources and use.

When asked how data was used to decide programs, many participants described the unavailability of adolescent health data. Many of the programs currently being run were organizational initiatives or donor-based programs. To justify donor-based programs, non-governmental agencies often perform a needs assessment or a baseline survey to determine if a need was seen. These assessments were not published and were for organizational purposes only.

In this study conducted in the West Bank, we identified opportunities and challenges within the Palestinian HIS concerning adolescent health. The opportunities encompassed capacity building, digitalization of health records, multi-sectoral collaboration, service reorientation based on health information, strategic actions for adolescents’ well-being, and enhancing community engagement. However, the study also unveiled critical challenges, including staff shortages, a lack of health information specialists, poor internet connectivity, non-unified data collection systems, insufficient data for essential indicators, incomplete or incorrect data, limited data sharing, and issues surrounding data ownership. Addressing these challenges is crucial for the use of the HIS for informed decision-making, evidence-based policies, and improved adolescent health outcomes in the West Bank.

As the priority for adolescent healthcare has grown in recent years within the country, it has become key to assess the capacity of the current HIS to manage the collection and dissemination of adolescent health data effectively. Our findings indicated that the HIS holds substantial potential, exemplified by its ability to employ data for service reorientation to address challenges faced by certain programs. This is a promising illustration of the impactful role that data utilization can play in shaping adolescent health initiatives. Furthermore, establishing family services within governmental primary healthcare clinics, where entire families can access comprehensive services in a single location, contributes significantly to safeguarding privacy and mitigating the stigma that often deters adolescents and youth from seeking care. This approach, proven successful among Latino populations in the United States, offers adaptable possibilities for other settings [ 29 ].

It was also found that implementing digital records for primary and secondary health facilities can help healthcare providers offer better care, ensuring that information is available when needed. Technology allows for the capture of data more quickly, lessens the chances of errors compared to manual entry, and helps organize information efficiently. This is a tool for a broader approach to change, and healthcare professionals must be open to this change [ 30 ]. Furthermore, no unified system in data collection within primary and secondary health facilities does not help link both systems. It was found that the primary and secondary health care centers do not share the same digital problems, so the exchange of information is not feasible. The DHIS2 system was developed to collect data from different levels of health facilities and users [ 31 ]. The software has been used in 46 countries and is known for its ease of use and adding new modules if needed [ 32 ]. To overcome these challenges and advance toward a more efficient HIS, healthcare professionals must embrace digital records integration while also addressing staff shortages and providing adequate health informatics training.

Staff shortages have resulted in the overload of current staff, with the need for data entry personnel. Additionally, there is a need to invest in health information programs and understand that this differs from IT specialists. The HIS involves more than just electronic records. With an increase in the use of computers and electronic records, it is essential that the staff receive the proper training in health informatics. Providing institutional and individual capacity building is essential for building a solid body of training in data collection and ensuring the data’s quality. Technology and e-health are vital to improving health and moving forward toward universal health coverage. A study by the WHO found that 60% of countries in the Eastern Mediterranean and African Region reported having access to training towards e-health [ 33 ]. A study done in Palestinian and Jordanian hospitals showed that 86% of the staff included in the study desired health informatics training [ 34 ].

It was also found there is a limited understanding of the importance of data and information among health professionals [ 30 ]. Healthcare professionals should also be trained in data entry and given incentives to provide good data quality entry [ 30 ]. Data quality was reflected in the lack of incentives and training and was also seen in other countries. In a review of the data quality of HISs in low and middle-income countries, no country showed a percentage of data quality higher than 50% [ 35 ]. The movement from paper-based reporting to electronic records plays a role in improving data quality [ 36 ]. Increasing the availability of training also helped increase data quality [ 37 ].

The unavailability of internet connectivity was a major challenge, especially in rural areas, making it harder to digitalize the HIS. A literature review showed that digital access nowadays is just as important as water and electricity connections. Communities are being punished for living in rural areas [ 38 ]. It was suggested that offline data entry and then connecting to the internet to load on the system would help overcome the lack of internet [ 39 ]. This was seen in the West Bank as well. Furthermore, no unified system in data collection within primary and secondary health facilities does not help with the linkage of both systems [ 40 ].

Data sharing was also viewed as a challenge to ensure that the data was not manipulated for preferred results and that the privacy of patients was maintained. This is seen as a challenge in most low and middle-income countries to ensure that data is anonymized and individual information is not illegally shared [ 41 ]. To help with the sharing of data and ensure ownership was not lost, an INDEPTH data depository was created. It was created to help low and middle-income countries share their data in a more structured way [ 42 ]. Another barrier found in data sharing amongst health professionals in Malawi, India, and Senegal was staff shortages and lack of incentives to fill in reports properly [ 43 ]. It was also found that the lack of knowledge-sharing culture also played a role in health professionals sharing health information.

Limited data is also available for essential adolescent health indicators. The lack of unified indicators for adolescent health is another challenge, with many participants unsure what indicators they should collect. Along with limited data, there was a sense of different definitions of the available indicators. It is essential to establish metadata standards in order to enhance documentation and facilitate the seamless integration of data across various countries, time periods, and sources [ 44 ]. Implementing even small changes to the HIS in the West Bank, despite the challenging environment, will significantly enhance the collection and utilization of adolescent health data and information.

Strengths and limitations

This is the first study to look at adolescent health from an HIS perspective in the West Bank. Analyzing the HIS regarding adolescent health is the first step in improving the overall adolescent health system. Participants were eager to share and learn ways to improve their overall HIS. The researchers were based locally, and the native language was used for interviews. As a limitation of this study, member checking was not feasible despite employing peer debriefing to enhance data validation. The potential burden on participants, who were already involved in other project activities where the research results were being applied, deterred additional engagement. Conducting member checking would have imposed an undue strain on their time and availability, thus limiting this aspect of our validation process. Also, one of the limitations that were faced was the inclusion of only participants from the West Bank. Results cannot be generalized for the occupied Palestinian territory, as the Gaza Strip and East Jerusalem were not included in the analysis.

In conclusion, this study has illuminated both the promising opportunities and persistent challenges within the Palestinian healthcare system’s HIS concerning adolescent health. While the system has demonstrated significant potential in capacity building, digitalization of health records, multi-sectoral collaboration, service reorientation, and enhancing community engagement, it is equally burdened by the daunting challenges of staff shortages, non-standardized data collection systems, insufficient data for essential indicators, and a lack of impact-based indicators. Furthermore, the limited culture of knowledge sharing remains a hurdle to realizing the full potential of HIS. To address these issues, we recommend urgent attention to staff shortages through comprehensive training programs for health information specialists, a concerted effort to standardize data collection systems, the development of a unified core indicator list for adolescent health, and the promotion of a robust knowledge-sharing culture among healthcare professionals and involved organizations. Embracing these recommendations will fortify the HIS and propel the Palestinian healthcare system towards improved adolescent health outcomes and more informed decision-making, despite resource limitations and complex humanitarian settings.

Supporting information

S1 file. interview guide for key informant interviews..

This interview guide was used to guide interviews with key informants.

https://doi.org/10.1371/journal.pone.0307207.s001

S2 File. COREQ, the consolidated criteria for reporting qualitative studies.

This checklist is a guide to reporting qualitative research.

https://doi.org/10.1371/journal.pone.0307207.s002

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• Open access
• Published: 19 August 2024

Physical activity policies in Saudi Arabia and Oman: a qualitative study using stakeholder interviews

• Ali Ahmed Alzahrani 1 ,
• Peter Gelius 2 ,
• Adrian E. Bauman 3 &
• Klaus Gebel   ORCID: orcid.org/0000-0003-0330-7756 1  

Health Research Policy and Systems volume  22 , Article number:  111 ( 2024 ) Cite this article

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Countries in the Middle East have some of the lowest rates of physical activity and some of the highest rates of obesity in the world. Policies can influence population levels of physical activity. However, there is a dearth of research on physical activity policies in the Gulf region. This qualitative study analyses cross-sectoral barriers and facilitators for the development, implementation and evaluation of physical activity policies in Saudi Arabia and Oman, two of the largest countries in the region.

Semi-structured interviews were conducted with 19 senior policymakers from the Ministries of Health, Education, and Sport in Saudi Arabia and Oman, and were examined using thematic analysis.

We identified seven themes related to physical activity policies in Saudi Arabia and Oman: leadership; existing policies; physical activity programs related to policies; private sector policies; challenges; data/monitoring; and future opportunities. Both countries have a central document that guides policy-makers in promoting physical activity, and the available policies in both countries are implemented via multiple programs and initiatives to increase physical activity. Compared with Oman, in Saudi Arabia, programs from the non-profit sector, represented by community groups, play a more significant role in promoting physical activity outside the government framework. The private sector has contributed to promoting physical activity in both countries, but interviewees stated that more financial support is required. Policy limitations differ between Saudi Arabia and Oman: intersectoral collaboration in Oman is limited and mainly based on individuals’ own initiative, while the health transformation in Saudi Arabia tends to slow down policy implementation in relevant areas. Physical education in Saudi Arabia and Oman is similar; however, increased support and collaboration between government agencies and the private sector for out-of-school sports academies are needed.

Conclusions

This study addresses key gaps in analysing physical activity policies in Gulf Cooperation Council countries. Our study highlights the importance of increasing financial support, improving collaboration between governmental agencies and between them and the private sector and consolidating efforts to back physical activity policies and dismantle cross-sectoral barriers in Saudi Arabia and Oman. Educational institutions in Saudi Arabia and Oman play a crucial role in promoting physical activity from early childhood to young adults. Our insights assist policy-makers, public health officials and stakeholders in shaping effective physical activity-promoting policies, programs and interventions to prevent non-communicable diseases. Challenges identified in Saudi Arabia and Oman's policies will inform their future development.

Peer Review reports

Despite the health benefits of physical activity [ 1 , 2 , 3 ], in most countries, large proportions of the population remain insufficiently active [ 4 , 5 ]. In line with social–ecological models of health [ 6 ], the need for policies to increase population levels of physical activity has been highlighted [ 7 , 8 ]. Physical activity policy is defined as any formal or informal legislative or regulatory action or organized guidance provided by governments and organizations [ 9 , 10 , 11 , 12 ]. Policies can be cross-sectoral and encompass access to various forms of physical activity, including walking and cycling, regulate and promote programs and initiatives, and provide a comprehensive framework for the design, funding and implementation of diverse physical activity interventions [ 9 , 13 , 14 ].

Countries in the Middle East have amongst the lowest levels of physical activity and some of the highest rates of overweight and obesity in the world [ 4 , 15 ]. In Saudi Arabia and Oman, only 29.7% and 25.6% of the adult population, respectively, meet the physical activity recommendations. For the Middle East and North Africa (MENA) region the rate is 38.5% and the global average is 31.3% [ 4 ]. Moreover, in 2020 in Oman, Qatar, Bahrain, Kuwait and the United Arab Emirates, more than 80% of teenagers and 55% of adults (45% of men and 65% of women) were not sufficiently active [ 16 ]. In Saudi Arabia and Oman, dietary patterns are shifting due to increased consumption of processed foods, leading to higher rates of obesity, diabetes and cardiovascular diseases. Traditional diets rich in fruits, vegetables and lean meats are being replaced by fast food and sugary drinks. Moreover, reduced physical activity and increasingly sedentary lifestyles are major determinants of the obesity epidemic [ 17 , 18 ]. Therefore, there is an urgent need in this region for action on physical activity, including policy development, implementation and evaluation.

The 2014 report from the WHO Regional Office for the Eastern Mediterranean on promoting physical activity in the region included a policy mapping exercise on national policy and action on physical activity in all 22 member states [ 19 ]. National physical activity policies were reported for most countries, including all members of the Gulf Cooperation Council (GCC), a political and economic alliance of six Middle Eastern countries [Saudi Arabia, Kuwait, the United Arab Emirates (UAE), Qatar, Bahrain and Oman] that share a similar cultural, social and economic background. According to WHO’s recent Global Status Report on Physical Activity [ 16 ], only 11 of the 22 countries in the Eastern Mediterranean Region had a national physical activity strategy, while all GCC countries had one. The report also identified some partnerships to promote physical activity between various ministries in the Gulf states, particularly across the health, sports and education sectors.

In a systematic scoping review, Klepac Pogrmilovic et al. examined the academic literature on physical activity policy and identified 163 papers, covering 168 countries, including all 6 GCC members [ 20 ]. Few papers on physical activity policy across the Eastern Mediterranean region were identified, thus, the findings for the region were largely based on the 2014 report of the WHO Regional Office [ 20 ]. In another study by Klepac Pogrmilovic and colleagues, a survey on national physical activity policies was completed by representatives of 76 countries. However, this only included three of the 22 countries from the Eastern Mediterranean Region. The authors also emphasized that although national policies and strategies exist in all GCC countries, implementation is lacking. The authors recommended that further research be undertaken into physical activity and sedentary behaviour policy in the region [ 8 ]. It is essential to contextualize these findings with regard to physical activity policies in the Gulf region, including disparities and challenges in their implementation.

Recently, Albujulaya et al. analysed physical activity policy initiatives in Saudi Arabia by conducting semi-structured interviews with three policy-makers from the Ministries of Education and Sports and with six Saudi academics working in this field [ 21 ]. Surprisingly, they did not interview anyone from the Ministry of Health. They concluded that while physical activity amongst Saudis overall has increased, levels among women are still low. While Albujulaya et al. analysed aspects of physical activity policy development, implementation and evaluation in Saudi Arabia, they did not address potential cross-sectoral barriers and facilitators for these processes.

The primary objective of the present study was to analyse cross-sectoral barriers and facilitators for physical activity policy development, implementation and evaluation in GCC countries. The best research paradigm for this study is qualitative research. We chose interpretivist research to describe complex social realities, explore new or under-researched subjects and generate hypotheses for future quantitative research. This approach allows for a detailed examination of phenomena, which is difficult with quantitative methods. Practically, we also lacked a large, easily accessible sample to survey quantitatively. Therefore, interpretivism is particularly effective for understanding stakeholder perspectives on physical activity policies in unique cultural settings, such as those in Saudi Arabia and Oman, providing deep insights into subjective experiences and nuanced views. To achieve this, we interviewed policy-makers from the Ministries of Health, Sport and Education in Saudi Arabia and Oman, the two largest countries in the GCC. We picked these three ministries as previous research highlights that they are chiefly responsible for promoting physical activity and implementing related policies in the Gulf region [ 22 , 23 , 24 ].

Study design

This is a qualitative study using the interpretivist research paradigm [ 25 ], comprising semi-structured interviews with key stakeholders in physical activity policy-making in Saudi Arabia and Oman. We utilized the COREQ checklist to ensure the rigour and transparency of our qualitative methods (Appendix 1).

Sampling and recruitment

We defined stakeholders as those that are directly involved in the development, implementation and evaluation of physical activity policies. We initially sought to conduct interviews with stakeholders in all six GCC countries. We attempted to reach a contact in the Ministry of Health (MoH) in each GCC country by writing to the official email address of the ministries to introduce the study and request the contact details of relevant stakeholders. Despite following up with non-responders, we did not receive any replies from Qatar, Bahrain, Kuwait and the United Arab Emirates. Therefore, we narrowed the scope to Saudi Arabia and Oman, the two largest countries of the six, with 36.4 million and 4.6 million inhabitants, respectively, accounting for 70% of the GCC’s population [ 26 ]. After obtaining contact details of key stakeholders from the ministries, the participants were contacted directly via email or telephone. To recruit additional participants, we used snowball sampling by asking interviewees to provide contact details of other relevant stakeholders in their organization. Because of the documented previous involvement of the sports and education sectors in promoting physical activity in the Gulf States [ 19 ], we also asked participants to identify relevant stakeholders in the Ministries of Sports and Education in Saudi Arabia and Oman. Our study focussed on the Ministries of Sports, Health and Education as they are significantly involved in promoting physical activity within Gulf Cooperation Council countries [ 22 , 23 , 24 ]. Attempts to contact the ministers directly were unsuccessful. However, we managed to reach senior staff in the ministries and in university sports federations which belong to the Ministries of Education. Additionally, we employed different strategies to engage participants from the non-governmental sector in both countries, including networking through professional contacts of the first author, utilizing online platforms such as Twitter and Facebook and forums and capitalizing on established partnerships with both non-governmental organizations (NGOs) and governmental sectors.

Participants were provided with information on the study, and all gave written consent to participate. Additionally, participants were informed at the beginning of the interview that they could withdraw from the study at any time if they chose not to continue participating. An interview guide, based on a review of previous literature [ 22 , 24 ] and collaborative input from the authors, was developed (Appendix 2). In the interviews, we explored stakeholders’ perspectives and opinions regarding existing physical activity policy documents from the Ministries of Health, Education and Sport in their country, as well as facilitators and barriers to physical activity policy development, implementation and evaluation, with field notes made during the interviews. A.A. conducted the interviews via Zoom due to the coronavirus disease 2019 (COVID-19) pandemic between December 2021 and February 2022. Interviews were conducted in Arabic, were audio-recorded with permission obtained from the participants and transcribed verbatim, and lasted between 10 min and 45 min. Repeat interviews were not carried out. The following personal information was collected from each participant: name, organization, position, age, gender and previous work experience. The participants were provided with an opportunity to review the Arabic transcripts for accuracy, and the final transcripts were translated to English. Monitoring of data saturation, an ongoing process based on the notion of informational redundancy [ 27 ], was conducted to ensure that comprehensive insights were obtained. The determination of the number of samples needed to reach data saturation was done separately in each country.

Data analysis

Authors A.A., A.B. and P.G. reviewed the transcripts to familiarize themselves with the content, after which thematic analysis was jointly undertaken by A.A., A.B. and P.G. to code each transcript. Themes were subsequently developed through a partially deductive approach: Main categories in Table  1 were derived from existing frameworks of the policy process, such as the HARDWIRED framework [ 28 ] (covering aspects such as development process, partnerships, resources, communication, evaluation and evidence-base) and CAPPA criteria [ 29 ] (including sectors/institutions involved, implementation, legal status, target groups, goals and targets, timeframe, budget and evaluation/surveillance). Subsequently, sub-categories were added via an inductive process conducted by A.A. during the thematic exploration stage, involving a comprehensive review of all codes within the combined dataset encompassing both Saudi Arabia and Oman. A.A., A.B. and P.G. discussed the coding and the preliminary interpretations to cross-validate the findings. These themes were informed by a comprehensive analysis of the extant literature and relevant findings from previous studies [ 22 , 24 ]. As a medical doctor at King Faisal Medical City in the southern region of Saudi Arabia, the lead author’s professional background informed his approach to data analysis in this qualitative study.

Ethical approval

The study was approved by the Human Research Ethics Committee of the University of Technology Sydney (UTS HREC ref. no. ETH21-6428).

Interviews were conducted with 19 high-level stakeholders in physical activity policy; 12 from Saudi Arabia and 7 from Oman. A total of four of the participants (two from each country) were women. In Saudi Arabia, four participants were from the Ministry of Health (MoH, including one from an NGO that is supervised by the MoH), five were from the Ministry of Education (MoE) and three represented the Ministry of Sport (MoS). In Oman, one participant represented the Ministry of Health, three were from the Ministry of Education and three were from the Ministry of Sport.

We generated six themes regarding physical activity policies in Saudi Arabia and Oman: leadership; existing policy documents; implementation of physical activity policies; challenges; data/monitoring for physical activity policies; and future opportunities. The theme non-profit sector/community groups was generated only for Saudi Arabia. Table 1 provides an overview of the derived main themes and findings.

• Saudi Arabia

Participants from the Saudi MoH and MoS stated that the leadership in the legislation, regulation, and evaluation of physical activity policies is divided between the two ministries. They also collaborate with other government agencies, including the MoE and the Ministry of Municipal and Rural Affairs, to increase physical activity opportunities in schools, workplaces and communities. Two participants from the MoE mentioned that the University Affairs Council and the Supreme Economic Council also work in the promotion of physical activity by regulating the implementation of programs in their sectors according to policy documents from the MoH and MoE.

According to the participant from the NGO supervised by the MoH, the non-profit sector is instrumental in promoting physical activity through walking groups. These have been established throughout the country to provide opportunities for people to engage in physical activity and to socialize, and which are co-organized by various stakeholders, including local businesses, schools, healthcare providers and government agencies: “I firmly believe that the non-profit sector plays a pivotal role in advocating for physical activity in Saudi Arabia” (NGO participant).

Participants from the Saudi MoH underlined that Health in All Policies is one of the main objectives in the new health care transformation in the kingdom. Most participants from the three ministries identified a certain level of cooperation between different stakeholders, particularly between the Ministries of Health, Sport and Education.

The Omani MoH leads the policies and programs to promote physical activity. Participant 1 from the MoH said that their non-communicable disease (NCD) and Health Committees are crucial for leading policy-making and promoting physical activity related to the National Policy for Prevention and Control of NCDs document [ 30 ].

Regarding Health in All Policies, all participants from Oman stated that there is cooperation between the different ministries, but that it is limited and based on individual agencies’ own initiatives rather than combined efforts or a policy imprimatur: “Partnerships exist, but they are limited and based on individual initiatives” (participant 2 from the MoS).

Relevant existing policies

Most of the participants from all three ministries in Saudi Arabia referred to the Quality of Life document [ 31 ], an economic and social reform blueprint that is part of the government’s overarching Saudi Vision 2030 development program [ 32 ]. The Quality of Life document includes the most important physical activity policies implemented by the three ministries: “There is no doubt that the 2030 Vision is our basic guidance” (participant 3 from the MoH). “Before 2017 there were no clear policies. Everyone works on vision files, and everyone has to achieve the [Vision 2030] target to increase the quality of life of the Saudi community” (participant 2 from the MoE). The Quality of Life document emphasizes the need to enhance public health and healthcare services, promote healthy behaviours, and provide opportunities for physical activity and sports participation.

Interviewees from the MoE highlighted that the University Sports Federation strategy promotes physical activity and sport in tertiary education [ 33 ]. Some important miscellaneous policy documents were identified by staff of the three ministries, such as the National Strategy for Healthy Food and Physical Activity 2015–2025 [ 34 ], the Physical Activity Guidelines for Health Practitioners [ 35 ], the 24-Hour Movement Guidelines [ 36 ] (all by the MoH) and the annual report of the Sport for All Federation by the MoS [ 37 ].

Almost all participants across all three ministries stated that the government of Oman’s overarching Vision 2040 [ 38 ] is currently the most important policy document. Participants from the MoE reported that the Vision 2040 guides the promotion of student physical activity, with support from related documents such as the student learning calendar, education document, standards document and the school sports curriculum. These policy documents aim to promote physical activity among students by better integrating physical education (PE) classes into the overall curriculum to encourage regular physical activity and healthy habits. According to participant 1 from the MoH, the Education Document is a comprehensive strategy, including PE and promotion of physical activity in schools and universities. The document outlines various initiatives, policies and guidelines to ensure that education includes a focus on physical health and fitness [ 39 ]. Three participants from the three different Omani ministries referred to the National Policy for Prevention and Control of NCDs [ 30 ], published by the MoH, as the central policy document for physical activity promotion in Oman. Three study participants from the MoS suggested that the Omani Sports Strategy [ 40 ] is important for guiding the promotion of physical activity for different segments of society.

Implementation of physical activity policies

(a) physical activity programs.

The MoH and MoE collaborate on a range of health-related issues (obesity, diabetes, mental health and visual acuity) to improve the overall health of school students and to detect problems at an early stage [ 41 ]. This led to the development of the Rashaka initiative, a large-scale multi-component school-based obesity prevention program, which started in 2016 and involved nearly 1000 schools across the country. In 2020, Rashaka was replaced by an annual program composed of screening of students for early signs of chronic diseases and lectures highlighting the significance of physical activity and a healthy diet.

Participants 3 and 4 of the Saudi MoH mentioned the Walk 30 Minutes initiative, which was implemented in 2021 and intends to increase physical activity through mass media and social media, and forms part of the National Strategy for Healthy Food and Physical Activity 2015–2025 of the MoH. An initiative by the University Sports Federation [ 33 ] (related to policies from the MoS), aiming to support sports facilities and clubs for girls and women, was mentioned by three participants from the MoS, and one participant highlighted the MoS’s Talent Support Program to identify and develop talented athletes in different sports.

Participant 3 of the Saudi MoH and participant 5 of the MoE mentioned the Healthy Mall Campaign and the Healthy Campus Project to promote physical activity in air-conditioned malls and universities. These initiatives are related to policies of the National Strategy for Healthy Food and Physical Activity (MoH and MoE). Despite challenges, the study participants considered the Saudi physical activity programs to be effective.

Participants 1 and 2 of the MoE identified programs related to PE policies from the Education Document, which include increasing the number of PE classes per week and organizing tournaments in different sports. According to participants from the three different ministries, a range of physical activity programs took place during the COVID-19 pandemic, including campaigns calling for physical activity at home using apps with exercise videos. These initiatives, as reported by the participants, align with and are supported by the physical activity policy documents from the Ministries of Health, Sport and Education, that is, the National Policy for Prevention and Control of NCDs [ 30 ] and the Oman Sport Strategy [ 40 ].

According to multiple participants, several community-based initiatives were underway in Oman, such as Active Community, Healthy Cities and Healthy Villages and The Green Playgrounds Project. These initiatives had been set up in all Omani cities to make the built environment more activity friendly, for example, by improving neighbourhood walkability, which is also based on the National Policy for Prevention and Control of NCDs [ 30 ].

(B) Private sector

According to most of the participants, the private sector makes important contributions to physical activity promotion in Saudi Arabia by being directly involved in the policy development process. The Tatweer Educational Company, a private holding dedicated to implementing the government's education reform initiative, has developed programs to promote physical activity in schools, aligning with its commitment to a holistic education system. In line with the conceptualization of active travel as physical activity, the Red Sea Company drives the development of Saudi Arabia’s west coast and aims to improve neighbourhood walkability. Participants from the MoE were unanimous in the view that private universities make significant contributions to the promotion of physical activity among staff and students on the basis of financial support from their funders. International and local investors in the education sector are urging private universities to promote physical activity to enhance the universities’ reputation and to be more attractive for prospective students.

According to participant 1 from the Ministry of Health, walking and hiking groups supported by the Health Promotion Center [ 42 ] (a non-profit charitable organization under the umbrella of the Saudi Ministry of Labor and Social Affairs) play an important role in promoting physical activity in Saudi Arabia. This is despite a lack of governmental support, with influencers and celebrities utilizing social media platforms for the promotion of physical activity. This organization has internal policies for the promotion of physical activity through different programs: “The fact is that community groups working to spread this culture of walking have no ceilings, no limits, and no bureaucracy” (participant 1 from the MoH).

In contrast to Saudi Arabia, participants in Oman stated that more support from the private sector is needed to promote physical activity in the country. However, participant 3 from the MoE mentioned an agreement between the MoE and Muscat Pharmacy & Stores limited liability company (LLC) to hold a football tournament for elementary school students. Nevertheless, it is important to highlight that there is a prevailing perception that physical activity cannot be easily monetized. This contributes to the private sector’s limited interest in supporting such initiatives in the Gulf countries, as it is not perceived to yield immediate profits. Overall, the participants from both Saudi Arabia and Oman stated that, unlike in government-supported programs, in the private sector there are no performance indicators to track the progress of physical activity programs.

Data/monitoring

Two participants from the Saudi MoH and MoE mentioned challenges in relation to physical activity monitoring, as each of the three involved ministries independently conducts surveys on physical activity with different methodologies and tools, which may yield conflicting results in monitoring the effects or end-product of physical activity policies. Furthermore, participants from all three ministries confirmed the existence of national surveys for physical activity and emphasized their importance in assessing activity levels. They also shared insights about how they monitor the implementation of physical activity policies and evaluate the effectiveness of various initiatives in their respective sectors: “We follow and evaluate health through periodic national surveys, but each ministry has its own survey with different results. It is not clear how widely these data are utilized in different sectors, such as education, and sports, to inform policies and interventions” (participant 2 from the MoH).

Participants from the MoH and MoS stated that participation rates, policy compliance, budget allocation and health outcomes are being tracked to assess the effectiveness and progress of physical activity policies, with a specific focus on regular reports and data analysis. Furthermore, one participant from the MoE said that there is no monitoring happening for their education-specific policies.

Participant 4 from the MoH suggested that limited policy implementation is likely until the health transformation process is completed by 2030. The health transformation in Saudi Arabia is a recent, prominent project that aims to restructure the health sector to make it more comprehensive, effective and integrated. The transformation is mainly focussed on the prevention of chronic diseases and the promotion of a healthy lifestyle through physical activity and a nutritious diet. On the ground, this transformation entails significant changes in healthcare infrastructure, delivery and accessibility, as well as increased awareness campaigns and the implementation of various programs aimed at improving public health and wellbeing [ 43 ]. To expedite the health transformation in Saudi Arabia, the respondent considered it essential to implement the policies from the Quality of Life document, which is part of the Kingdom’s Vision 2030. This particularly involves promoting physical activity and healthy lifestyles. By fostering these habits, the country could achieve significant improvements in public health and wellbeing. Participant 3 suggested that bureaucracy is a limitation, as new policies and regulations take a long time to implement under different administrations. Moreover, participants from the MoH and MoE declared that a lack of sustainability of physical activity programs and funding were major limitations due to changes in administrations over short periods. Most participants representing the three Saudi ministries stated that a lack of collaboration and cooperation between government departments was a major challenge. For instance, some policies from the MoH need to be implemented by the MoE, such as the screening program of school students [ 41 ]. The hot climate and the desert environment in the Gulf region also present challenges when it comes to implementing physical activity policies.

According to most participants, a lack of funding for the promotion of physical activity was a common challenge in Saudi Arabia because health budgets are mostly allocated to hospitals and curative services rather than to NCD prevention, including physical activity promotion. A lack of facilities (e.g. sports fields, recreation centres, indoor and outdoor courts and multi-use sporting hubs) is a further challenge according to most Saudi respondents. Moreover, negative societal attitudes towards physical activity were highlighted by one participant, citing challenges such as the prevalence of social norms that prioritize sedentary pastimes and leisure activities, thereby reinforcing a culture that tends to discourage physical activity [ 44 ].

According to most participants, insufficient collaboration between different stakeholders, as well as a lack of government funding and support from the private sector, were the most important barriers to physical activity promotion. Like in Saudi Arabia, participants from Oman said that the hot climate and desert environment in the Gulf region, a lack of facilities and/or a lack of access to them and negative attitudes in the population towards physical activity (social norms that prioritize sedentary pastimes and leisure activities) all pose obstacles to physical activity. Some participants from the MoE stated that a lack of support for PE facilities in schools has been a major obstacle to increasing students’ physical activity. Like in Saudi Arabia, respondents from Oman felt that the country should rapidly implement the provisions of the Vision 2040, specifically those related to the prevention of chronic diseases through the promotion of a healthy lifestyle and physical activity. Furthermore, an increase in government funding dedicated to promoting physical activity would be desirable.

Future opportunities

Participant 3 from the Saudi MoH stated that future policies might include investment in technology, such as developing smartphone apps for the promotion of physical activity during pandemics, and these could contribute to future physical activity programs. However, this requires direct support from the government, both financially and technically, by providing technical expertise, developing and implementing technology-based solutions and ensuring privacy and security. Furthermore, participant 1 from the MoS and participant 3 of the MoE claimed that programs, such as out-of- school academies for talented young athletes, could further encourage physical activity and foster athletic talent. Three participants from the MoE pointed out that unifying efforts between different stakeholders would be important. Moreover, more support in terms of funding, infrastructure, a skilled workforce, and research are considered promising opportunities by most participants from the three ministries.

Participants from the three ministries stated that community participation, such as activating schools as centres for physical activity promotion in the community, would be a great opportunity in the future if cooperation between different ministries is enhanced. Three participants from the Omani MoS and MoE said that improvements to facilities and the skills of the workforce (e.g. PE teachers, coaches, gym instructors, etc.) are required to increase activity levels. Despite the existence of the national plan for physical activity promotion in Oman [ 45 ], all participants emphasized that the lack of partnerships between the government and other relevant parties, such as schools, sports clubs and community organizations, is a common and significant obstacle. Furthermore, participant 1 from the MoS and participant 3 from the MoE said that more support for out-of-school sport academies, including improved collaboration between governmental agencies and the private sector, and supporting physical education as a part of the Omani education strategy, would be great opportunities.

Participants from the Ministries of Education of Saudi Arabia and Oman highlighted that physical education is crucial for the future in both countries, fostering healthy habits essential for a productive workforce. Integrating physical education into the curriculum promotes wellness and prevents lifestyle-related diseases, contributing to various sectors [ 39 ]. As both nations progress, emphasizing physical education will enhance individual health and serve as a strategic investment in a robust, dynamic workforce.

This study examined cross-sectoral barriers and facilitators for physical activity policy development, implementation and evaluation in Saudi Arabia and Oman by interviewing high-level stakeholders from their Ministries of Health, Sports and Education. Oman established a national policy framework for physical activity in 2014 [ 18 ] under the umbrella of the Oman Vision 2040 [ 38 ], 3 years before Saudi Arabia introduced its Quality of Life Program [ 46 ] under the umbrella of the Saudi Vision 2030 [ 31 ]. Many programs and initiatives to enhance physical activity in both countries were identified, particularly sports initiatives. However, it is worth noting that these efforts often lack comprehensiveness, encompassing a broad range of activities and demographics, and face challenges in effective implementation – observations that are in line with findings from a survey on national physical activity policies by Klepac Pogrmilovic et al. [ 8 ]. The programs and initiatives are predominantly focussed on urban areas and may neglect rural communities [ 44 , 47 ]. Interest in promoting gender equity in physical activity in Oman was prominent, with several programs for female participants [ 24 ]; there was less focus on gender equity in Saudi Arabia, although a positive development was the introduction of PE classes for female students in primary and secondary education in 2018. Policies for promoting physical activity should also support individuals with special needs, patients and the elderly by implementing community programs targeted at these groups, such as walking groups and fitness classes for older adults, and programs targeting people with chronic conditions. Additionally, it is important to focus on policies and programs that support gender equality in physical activity and health.

Our finding regarding insufficient backing of policy interventions to create environments supportive of physical activity in both countries aligns with a study by Allender et al., who interviewed stakeholders in local government in Victoria, Australia, to analyse physical activity policies and initiatives. Similar to our findings from Saudi Arabia and Oman, they identified a lack of relevance and competing priorities (i.e. promoting healthy eating environments was not considered a priority above food safety) as reasons for the lack of support towards creating supportive environments for physical activity and healthy eating [ 48 ].

Health in All Policies has been embraced in Saudi Arabia by integrating the promotion of physical activity into policy development across various areas such as education, sports and the private sector. However, while this integration is mentioned in the respective documents, challenges in implementation may have arisen due to limited cooperation between sectors. Many partnerships have been established with multiple parties in the Kingdom (MoH, MoS, MoE, and the Ministry of Municipal and Rural Affairs) to further develop physical activity policies in each sector and to remove obstacles to the implementation of physical activity programs. According to a WHO report from 2017, promoting Health in All Policies in Saudi Arabia has been identified as a national priority, monitored by the Ministry of Health [ 49 ]. Intersectoral collaboration in Oman is apparently less developed than in Saudi Arabia, hindering the integration of physical activity policies across sectors. Unlike Saudi Arabia’s comprehensive approach of Health in All Policies, Oman relies more on individual agency initiatives. However, there is potential for improvement in Oman to strengthen intersectoral collaboration and enhance the integration of physical activity policies by establishing a comprehensive policy framework and promoting coordinated efforts among sectors. For instance, the Omani government could create an intersectoral task force or committee dedicated to fostering collaboration.

In Saudi Arabia, the non-profit sector, represented by community groups, plays a significant role in promoting physical activity outside of the government framework, aided by the promotion of physical activity by influencers and celebrities through social media platforms [ 42 ]. By contrast, our study participants did not mention any significant involvement of the non-profit sector in physical activity promotion in Oman, either because these types of organizations do not play a role or because their role is not valued by the government stakeholders who we interviewed. The private sector contributes to promoting physical activity in both countries, with particularly strong partnerships with the governmental sector in Saudi Arabia. This may be because tax benefits exist for companies that encourage and promote physical activity in Saudi Arabia [ 31 ]. There are previous examples of these types of partnerships in Oman, such as a collaboration between the education and private sector aiming to create a healthier environment and lifestyle in schools. These partnerships have been achieved through the provision of financial support and sponsorships, specifically targeting sports equipment, facilities and physical activity programs in schools [ 50 ]. However, insufficient budget allocation in this area was considered a challenge, which is consistent with our study, with most participants from the sultanate expressing the need for greater financial support from the private sector.

Policy limitations differ between both countries, mainly due to the health transformation in Saudi Arabia, specifically with the Kingdom’s Vision 2030 [ 51 ]. The slow pace of transformation in various Saudi public health, infrastructure, urban planning, sports and recreation policies may impact their likelihood of being fully implemented by 2030, potentially falling short of WHO’s target for increased physical activity by that year set in their Global Action Plan on Physical Activity [ 52 ]. One of the objectives of the health sector transformation and the Quality of Life Program is to decrease the proportion of the Saudi population who are not sufficiently physically active below (67%) by 2030 [ 51 ]. The government has taken proactive measures to promote physical activity, investing in initiatives that raise awareness about its importance and the associated health benefits. This includes campaigns, public awareness programs and the establishment of recreational facilities to facilitate physical activity. In Oman, more collaboration between political parties is essential to improve the implementation of physical activity policies. According to participant 1 from the Omani MoH, several meetings were recently held with all parties to create plans to better implement physical activity policies. These meetings have led to increased monitoring and stricter enforcement by the Omani government regarding the implementation of physical activity policies in all relevant ministries. Effective health system policies significantly depend on inter-institutional collaboration. While primary health institutions play a central role, the impact of related entities is equally crucial. Educational bodies, sports organizations and community health centres contribute significantly to decision-making processes. Their closer involvement would ensure a more comprehensive approach to promoting physical activity, enhancing wellness and preventing lifestyle-related diseases [ 53 ].

According to previous studies, insufficient funding for promoting physical activity, and more broadly for NCD prevention, is a challenge in both Saudi Arabia and Oman [ 23 , 24 ]. Similarly, in a US study, state public health practitioners were interviewed about the National Physical Activity Plan, who also identified implementation costs and the complexity of physical activity policies as significant challenges [ 54 ]. Financial incentives and private sector involvement, while valuable, do not ensure adequate funding for all aspects of public health initiatives. The private sector’s contribution is often focussed on areas aligned with their business interests or corporate social responsibility. Nevertheless, in Saudi Arabia, certain private sector companies run national programs, such as the Tatweer Educational Company, a private holding dedicated to implementing the government's education reform initiative [ 55 , 56 ]. Enhancing funding for the implementation of physical activity policies in the Gulf region holds great promise in advancing infrastructure, cultivating a proficient workforce, and fostering research initiatives. On the basis of the Saudi Quality of Life document 2030 [ 46 ], the budget of the Ministries of Health, Sport and Education for promoting physical activity will likely increase until 2030.

The monitoring and evaluation of policy implementation across ministries in both countries is challenging due to the absence of comprehensive and precise data on physical activity prevalence in key sectors such as health, sport and education. Therefore, there is an urgent need to address data quality issues, such as inconsistent measurement methods employed across different sectors, which make it difficult to compare and consolidate data, and the lack of standardized protocols which undermines the accuracy and reliability of prevalence estimates. To efficiently monitor policy implementation, the responsibility could, for instance, be entrusted to the MoH for coordination with all pertinent sectors, while the General Statistics Authority should be designated to collect data on physical activity.

Responsibility for ensuring data quality rests with various stakeholders involved in the data collection, including researchers, survey administrators, data analysts and policy-makers. These stakeholders must work collectively to implement robust data collection methodologies, appropriate sampling techniques, rigorous quality control measures and transparent reporting practices. Monitoring of the impact of policies on population levels of physical activity in Saudi Arabia and Oman has improved, but more work is needed, particularly in the education sector in Oman, which requires evaluation of the progress and impact of policies.

To create and implement comprehensive policies, programs and supporting environments, a variety of sectors must collaborate in both countries. This may include transport, urban planning, media, social work, religious and cultural affairs [ 23 ]. In Saudi Arabia, one of the most effective health-promoting practices is physician-recommended physical activity [ 57 ], which is recognized as one of the eight best investments for physical activity by the International Society for Physical Activity and Health [ 58 ]. Therefore, the primary healthcare system in the Gulf region has a critical role in the promotion of physical activity, and further policy development in this area would be promising [ 57 ]. In addition, physical education policies in schools play an integral part in the Gulf states [ 59 ]. Educational institutions in Saudi Arabia and Oman are crucial in promoting physical activity among various age groups. From childhood through adolescence to young adulthood, schools offer structured physical education programs, health education and gender-inclusive activities. Universities support these efforts by providing sports facilities and activities as well as by conducting research on active lifestyles. Coordinated national policies amplify the effectiveness of these initiatives [ 22 , 39 , 60 ]. Furthermore, active transport and urban design policies have not yet been developed sufficiently to become potential contributors to population levels of physical activity in these countries due to cultural, environmental and climatic differences [ 23 ].

Strengths and limitations

Strengths of this study include a sample of high-level stakeholders who are directly involved in the formulation of physical activity policies from three ministries in Saudi Arabia and Oman, the two largest countries in the GCC. Additionally, we recruited one prominent participant from an NGO that is supervised by the Saudi Ministry of Health. We were not able to reach participants from the non-governmental sector in Oman. The original research plan was targeted at all six member countries of the Gulf Cooperation Council, but we were not able to recruit participants from the other GCC states due to political sensitivities surrounding the subject and a lack of responsiveness from relevant authorities. This may limit the generalizability of our findings beyond these specific contexts. However, we managed to recruit senior participants from the two largest GCC countries, which account for 70% of the GCC population. As in many countries, governmental representatives may have been constrained in what they reported in these interviews. Regarding the limitation of interview responses, some participants spoke about the existence of physical activity policies but did not want to provide further information on how they are being implemented, and this kind of information is not easy to obtain from other sources either. Thus, these gaps constitute a need for future research. To ensure research quality based on Lincoln and Guba’s criteria [ 61 ], we implemented several strategies. For credibility, we used investigator triangulation (involving multiple researchers) and theoretical triangulation (utilizing multiple policy frameworks). We did not use methodological triangulation, as we only conducted interviews, nor data triangulation, relying solely on audio transcripts. To ensure dependability, we kept detailed records of data collection and assessed coding accuracy and reliability among our team. For transferability, we addressed inherent challenges by collecting data from two countries, Saudi Arabia and Oman, enhancing the applicability of our findings to similar contexts. Although achieving confirmability was challenging due to our focus on individual perceptions, we aimed for transparency and objectivity in documenting our procedures and decisions.

This study fills important gaps in the analysis of physical activity policies in the Gulf region. Understanding the unique challenges, barriers and successes in promoting physical activity in the GCC countries is essential for developing relevant policies and strategies in the future. Our study highlights the importance of increasing financial support, improving collaboration between governmental agencies and between them and the private sector, and consolidating efforts to back physical activity policies and dismantle cross-sectoral barriers in Saudi Arabia and Oman. Educational institutions in Saudi Arabia and Oman play a crucial role in promoting physical activity from early childhood to young adults. Schools offer structured physical education, health education and gender-inclusive activities, while universities provide sport facilities and conduct research on active lifestyles. Coordinated national policies enhance the effectiveness of these efforts.

Specifically, we recommend allocating dedicated funds, establishing a centralized task force for coordinated policy implementation, creating incentives for private sector investment, developing a national strategy with measurable targets and conducting comprehensive policy reviews to remove bureaucratic obstacles. These steps will facilitate sustained progress and broader engagement in physical activity initiatives.

Our findings provide valuable insights and evidence for policy-makers, public health officials and other stakeholders in the region to develop targeted policies, programs and interventions that promote physical activity and prevent non-communicable diseases. The identified challenges and limitations of physical activity policies in Saudi Arabia and Oman will guide their future development.

Availability of data and materials

The datasets generated and/or analysed during the current study are not publicly available to maintain participants’ confidentiality. However, they can be obtained from the corresponding author upon reasonable request.

Abbreviations

Coronavirus disease 2019

Gulf Cooperation Council

Health in all policies

Limited liability company

Ministry of Education

Ministry of Health

Ministry of Sport

Non-communicable disease

Non-governmental organization

• Physical activity

Physical education

United Arab Emirates

United States

World Health Organization

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Acknowledgements

We would like to express our sincere thanks to the policy-makers in the Kingdom of Saudi Arabia and Oman for their participation in this research.

This project is kindly supported through a PhD scholarship from King Faisal Medical City in Saudi Arabia and PhD funding from the Faculty of Health of the University of Technology Sydney.

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A.A. recruited participants and conducted interviews with policy-makers. A.A., A.B. and P.G. collectively analysed the transcripts. K.G., A.B. and P.G. made significant contributions to the thorough review and editing of the manuscript.

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Alzahrani, A.A., Gelius, P., Bauman, A.E. et al. Physical activity policies in Saudi Arabia and Oman: a qualitative study using stakeholder interviews. Health Res Policy Sys 22 , 111 (2024). https://doi.org/10.1186/s12961-024-01192-w

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• Volume 14, Issue 8
• Qualitative exploration of patients’ experiences with Intrabeam TARGeted Intraoperative radioTherapy (TARGIT-IORT) and External-Beam RadioTherapy Treatment (EBRT) for breast cancer
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• http://orcid.org/0000-0002-7573-6712 Sandeep Kumar Bagga 1 ,
• Natalie Swiderska 2 ,
• Charlotte Hooker 1 ,
• Jennifer Royle 3 ,
• Marie Ennis-O'Connor 4 ,
• Siobhan Freeney 5 ,
• Dympna Watson 4 ,
• Robin Woolcock 6 ,
• George Lodge 7 ,
• Siobhan Laws 7 ,
• http://orcid.org/0000-0003-1760-1278 Jayant S Vaidya 8
• 1 Research , MediPaCe , London , UK
• 2 Patient Engagement , MediPaCe , London , UK
• 3 Strategy , MediPaCe , London , UK
• 4 Independent Patient Advocate , Dublin , Ireland
• 5 Lobular (Breast Cancer) Ireland , Dublin , Ireland
• 6 Triple Negative Breast Cancer Foundation Inc , London , UK
• 7 Royal Hampshire County Hospital , Winchester , UK
• 8 Division of Surgery and Interventional Science , University College London , London , UK
• Correspondence to Dr Sandeep Kumar Bagga; sandeep{at}medipace.com

Objective To gather a deep qualitative understanding of the perceived benefits and impacts of External-Beam RadioTherapy (EBRT) and TARGeted Intraoperative radioTherapy (TARGIT-IORT) using Intrabeam to assess how the treatments affected patient/care partner experiences during their cancer treatment and beyond.

Design and participants A patient-led working group was established to guide study design and to help validate findings. Patients with experience of receiving EBRT or TARGIT-IORT were purposively sampled by Hampshire Hospitals NHS Foundation Trust. These patients had been offered both regimens as per their clinical features and eligibility. Semistructured interviews were conducted with 29 patients and care partners with lived experience of either EBRT (n=12, 5-day FAST-Forward regimen and n=3, 3-week regimen) or TARGIT-IORT (n=14). Thematic analysis was then carried out by two coders generating 11 themes related to EBRT or TARGIT-IORT.

Setting Semistructured interviews were conducted virtually via Zoom during February and March 2023.

Results A number of procedural grievances were noted among EBRT patients. EBRT was perceived as being disruptive to normal routines (work, home and travel) and caused discomfort from side effects. TARGIT-IORT was perceived by patients and care partners as the safer option and efficient with minimal if any disruptions to quality of life. The need for timely accessible information to reduce anxieties was noted in both cohorts.

Conclusions This qualitative study found that patients perceived EBRT as being greatly disruptive to their lives. In contrast, the one-off feature of TARGIT-IORT given while they are asleep during surgery gives them the feeling of stamping out the cancer without conscious awareness. These insights can help healthcare staff and policy-makers further justify the incorporation of the treatment favoured by these patient perceptions (TARGIT-IORT) more widely in routine practice. Further research is planned to explore TARGIT-IORT in more diverse populations and in the 35 countries where it is an established treatment option.

• breast cancer
• radiotherapy
• qualitative research
• breast surgery
• quality of life

Data availability statement

Data are available upon reasonable request. Raw data such as interview transcripts are not publicly available due to participant confidentiality and risk of compromising privacy but can be made available to researchers if appropriate confidentiality, ethics, regulatory and consent processes can be put in place.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjopen-2023-081222

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STRENGTHS AND LIMITATIONS OF THIS STUDY

This qualitative study included the two routinely offered radiotherapy treatment options (External-Beam RadioTherapy and TARgeted Intraoperative radioTherapy using Intrabeam) allowing for assessment of patients’ perceptions and experiences in each.

Methodological strengths include measures to prevent researcher bias, such as producing reflexive accounts, independent coding, and exploring both patient and care partner perspectives .

Extensive involvement of a patient-led working group ensures the study design and delivery is robust yet sensitive and respectful.

A limitation is the lack of diversity in the study population, being predominantly white and of higher socioeconomic status from a single English location because of which we are planning to explore these concepts in more diverse populations and in the 35 other countries where TARGIT-IORT is already a well-established treatment option.

The COVID-19 pandemic during which the patients were treated may have introduced some confounding factors, but they did provide useful insights into patient isolation issues.

Introduction

Conventionally, radiotherapy treatment for breast cancer has involved patients undergoing External-Beam Radiotherapy (EBRT) several weeks or months after their surgical removal (lumpectomy). EBRT is usually delivered postoperatively to the whole breast. For external beam radiotherapy, patients are required to attend 15 treatment sessions, each lasting about 15 min, 5 days a week over 3–6 weeks. 1 , 2 In 2020, the FAST-Forward protocol, administering radiotherapy over five sessions, was adopted in some parts of UK, partly as a response to the COVID-19 pandemic and even before the results of the FAST-Forward trial were published. 3 An additional 5–8 days of tumour bed boost is given in about a quarter of cases who are found to have higher-risk disease. 3

Targeted Intraoperative Radiotherapy (TARGIT-IORT) using Intrabeam offers an alternative to women with early breast cancer that is currently being used in a small number of hospitals across England. This approach, first used in 1998, delivers a single dose of radiotherapy directly to the breast tissue surrounding the tumour immediately after the tumour has been removed and the patient is still under the same anaesthetic in the operating theatre. The long-term results of the international randomised TARGIT-A trial (n=2298) in which TARGIT-IORT was compared with EBRT found TARGIT-IORT to be effective as whole breast radiotherapy, reduced non-breast cancer deaths and improved overall survival in those with grade 1 and grade 2 cancers. 4–12

To date, several studies have investigated patients’ experiences with TARGIT-IORT quantitatively. 13–18 These studies gathered information about patients’ quality of life (QoL) during and after treatment via questionnaires and have concluded that patients receiving TARGIT-IORT report high QoL scores 13 and better emotional well-being, less pain, fewer breast and arm symptoms compared with patients receiving EBRT. 14 19 The social impact of reducing the repeated journeys to the radiotherapy centre for both the patient and their care partner has been established. 20 Patient preferences have also been explored in studies based in the USA and Australia. 21–24 However, qualitative insights can give researchers and practitioners an in-depth understanding of patient perceptions that can help explain, with confidence, the reasoning behind the difference in QoL experienced by patients having these treatments.

Much of the literature on patients’ experiences of receiving radiotherapy has focused on EBRT alone where qualitative studies have used various methods such as workshops, interviews and diary entry analysis. Recurring themes include the need for adequate information provision, healthcare professionals’ knowledge of breast or arm lymphoedema (sluggish drainage of lymph fluid), perceived lack of choice, experiences of being naked and feelings of disempowerment, 25 psychological burdens of impact (and the resources required to support patients), 26 impact of side effects such as skin toxicity on patients’ QoL, life and health after radiotherapy and feeling mystified by radiotherapy and how it works. 27 28 While there are other studies investigating breast cancer patients’ lived experiences of receiving the diagnosis, treatment perceptions, experiences of survivorship and symptoms from radiotherapy, 29–34 they do not focus on lived experiences of receiving EBRT specifically.

In addition, the literature review has highlighted that no qualitative comparison of patients’ experiences of TARGIT-IORT and EBRT has been conducted although one qualitative study, exploring overdiagnosis of breast cancer, did briefly describe the experiences of patients having TARGIT-IORT and EBRT. 35 Rich descriptions of authentic experience can help to place the treatment pathway in the context of patients’ everyday world and to truly understand the perceived barriers, benefits and personal consequences of treatment. Therefore, this study is designed to gather a deep understanding of how patients define the benefits and impacts of each therapeutic regimen and how this qualitatively affects patients’ and/or care partners’ experiences. As a secondary aim, the study will also identify where there have been unnecessary treatment-related impacts on QoL and areas of potential improvement.

Methodology

Study design.

This study used a qualitative research design with semistructured interviews as the primary research instrument. Researchers adopted a phenomenological approach which encourages a bracketing off of researchers’ own preconceptions and opinions to help mitigate bias and promotes a special importance to individual human experience where multiple realities exist (based on participants’ own subjective experiences).

At the inception of the study, a patient-led working group was established to ensure the research was designed and conducted in a respectful and sensitive manner. Figure 1 outlines the research process. The authors have used the Consolidated criteria for Reporting Qualitative research to report the study 36 (see online supplemental file 1 ).

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Overview of research process. EBRT, External-Beam RadioTherapy; TARGIT-IORT, TARGeted intraoperative radiotherapy; REC, Research Ethics Committee.

Working group

Four patient advocates (three patients who had been treated for breast cancer and one care partner) with lived experiences of radiotherapy were invited to participate in a working group with the researchers. An initial meeting was held on 19 August 2022. In this meeting, the research design was discussed which included reviewing the study aims, the need for a comparison group, data collection method and participant recruitment channels. The second meeting, on 30 May 2023, focused on validating the emerging themes from the analysis. Between these meetings, the researchers shared early drafts of the core research material (eg, participant information sheet and consent form) to obtain members’ feedback and suggestions for amendments. The working group has also coauthored this paper.

Recruitment of participants and consent

A key outcome of the first working group meeting was to ensure the study design had a comparison group. This meant recruiting patients or care partners with lived experience of receiving EBRT to enable a comparison to those who had received TARGIT-IORT. The eligibility criteria are based on criteria used previously in TARGIT-IORT clinical trials ( table 1 ). All patients were, at the time of their cancer diagnosis, eligible for both TARGIT-IORT and EBRT.

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Eligibility criteria for interview participants

Participants were first identified by SL and GL at Hampshire Hospitals NHS Foundation Trust in accordance with the eligibility criteria, using purposive sampling (NHS stands for National Health Service, which is provided free for cost to patients in the United Kingdom). This Trust recruited patients to the randomised TARGIT-A trial between 2000 and 2012. Since the National Institute of Health and Care Excellence (NICE) recommendation to offer TARGIT-IORT to suitable patients, they have been offering the procedure to their patients. For this study, GL compiled a list of all patients who received either TARGIT-IORT or EBRT. Prospective participants were stratified first into rural and urban subgroups and then by age (50–60 and 60–70). A randomiser was then applied to these subgroups to ensure the final selection process was free from bias from clinicians who had treated patients. Cover letters and recruitment advertisements (approved by the ethics committee) were posted by GL to 58 eligible patients. Those interested in participating in the study contacted researchers voluntarily. Subsequently, the researchers shared a participant information sheet, consent form and provided further information during a short introductory call where participants also had the opportunity to ask further questions about the purpose and conduct of the research. In total 29 participants responded, and all were successfully recruited to the study. Participant characteristics can be found in table 2 .

Sample characteristics of interview participants

Semistructured interviews

Working group members agreed semistructured interviews should be used to gain rich descriptive accounts of experiences with EBRT and TARGIT-IORT. Members felt discussing sensitive and privileged information, namely people’s experiences of receiving the cancer diagnosis and treatment, would be more uncomfortable in, for example, a focus group environment. Therefore, two discussion guides (one for each type of radiotherapy) were developed and refined with the help of working group members (see online supplemental files 2 and 3 ). Interviews were conducted between 9 February 2023 and 2 March 2023 by researchers SKB, NS and JR who are experienced in using qualitative research methods as part of their professional roles. Each interview lasted approximately 60 min and was conducted virtually through Zoom and either digitally video recorded or audio recorded depending on participants’ wishes. The identity of the interviewer can positively or negatively affect the interviewer–interviewee relationship. Participants were, therefore, asked whether they would prefer an interviewer of the same sex, with the default position being that a female interviewer (NS or JR) will conduct the interview with patients and similarly, a male interviewer (SKB) for male care partners. During the interviews, informal member checking took place by interviewers routinely summarising what participants had said to check for accuracy and understanding.

Recordings were transcribed verbatim, with potentially identifying details anonymised and assigned a unique identifier.

In keeping with a phenomenological approach to analysis, researchers began by writing reflexive accounts. This involved reflecting on their own experiences, preconceptions and assumptions that have the potential to influence interpretations of participants’ accounts. This process helps to create the self-awareness required when attempting to consciously bracket out thoughts and opinions that could lead to bias.

Reflexive thematic analysis based on Braun and Clarke’s 37–39 six-step approach was used to analyse the qualitative data and to identify recurring themes related to patient and care partner experience ( figure 2 ). The process of data familiarisation took place during data collection, postinterview reflections, transcribing and re-reading the transcriptions and interview field notes. Initial transcripts were individually coded (identifying units of meaning) by two researchers (SKB and NS) who then reviewed the other’s codes. Through subsequent discussion and reflection and agreement that theoretical saturation was sufficiently achieved, codes were finalised and applied throughout the remaining transcripts. Through an iterative process, descriptive and interpretative codes were categorised to form 28 subthemes and 11 major themes. Microsoft Word and Excel were used to facilitate coding, grouping and text retrieval to identify illustrative quotes.

Reflexive thematic analysis (adapted from Braun and Clarke, 2020). 37

Patient and public involvement

Patients were involved in refining the research question, study design and outcome measures. Their contributions during these discussions were informed by their lived experiences, priorities and preferences during the first working group meeting (described above in the ‘Methodology, Working group’ section). Participant identification and recruitment channels were also discussed with the patient-led working group though they were not directly involved in recruitment into the study nor in the conduct of the study. The results of the study will be disseminated to the study participants once the peer-reviewed paper is published. The burden of the intervention was assessed by the patients themselves for this qualitative study.

The following section presents findings from the thematic analysis which looked at EBRT and TARGIT-IORT separately and the outputs from discussions of the second working group meeting ( table 3 ). Participants’ quotes have been labelled with identifiers (eg, P1, P2) not known to anyone other than the researchers (ie, not the hospital staff, participants themselves or anyone else).

Themes and subthemes arising from the interviews

Themes coming out of interviews with patients who had EBRT

Dissatisfaction with unalterable elements of ebrt procedure.

The majority of EBRT participants expressed discontent with many of the standard elements of the EBRT procedure. Some participants felt intimidated by the size of the room being ‘disturbing’ (P22) and the radiotherapy machine being ‘scary’ (P19):

…the room that you go into where the machine is, is cold…it could be a bit warmer. Now, some of that could be psychological because you're in a big white room with a big, huge machine… (P3) …the 2 nurses go into another side room, so, you feel so alone, and you know, and this machine sort of moving around you. It’s, it is quite scary to deal with. (P19)

Four participants also described the challenge associated with needing to hold one’s breath during sessions. This is done with the hope that the heart may receive less radiation by pushing the chest wall and the breast away from it. Participants described it as saying, ‘ that was the worst bit’ (P12), ‘ it’s going to be difficult’ (P15), ‘ I don’t want to be zapped on my heart’ (P21) and another felt it was ‘ really claustrophobic’ (P19) or causing ‘ panic’ (P19). The planning appointment required for EBRT was met with similar dissatisfaction. While there is a clear appreciation for healthcare staff and their workload, participants were unhappy with the dehumanising nature of these appointments:

You become another face… you do feel like a slab of meat while they're trying to get you in the right position and it’s not a pleasant experience. (P19)

These experiences resonated with working group members’ recollections: ‘silent’ and ‘cold, dark room’ and finding it difficult, a ‘physical challenge’ to maintain position after surgery. Another member felt that while healthcare staff were pleasant, the experience of receiving radiotherapy itself is ‘quite traumatic’ and emotional, ‘I remember lying there and tears came from nowhere…’.

As with study participants, working group members acknowledged that while healthcare staff themselves are not at fault, the ‘system’ causes the dehumanising elements described by participants referring to poor staffing levels and a high-pressure work environment within healthcare.

In contrast, one participant positively describes the EBRT sessions, ‘ there’s music on, and I didn’t find any cause to worry at all’ (P15). The relaxing effect of music was echoed by a working group member who also recalled how music helped in which she felt was ‘ brilliant’ and stated ‘ it helped my head’ .

Finally, one-third of participants expressed a strong objection to being tattooed which was required to ensure radiation is delivered to the right location.

What really did wind me up actually, I had to have the 3 dots tattooed on me and I didn’t want tattoos. (P3)

Participants were frustrated by the fact that it is permanent, the colour used and two participants felt it affected their confidence in wearing certain clothes, ‘ I can still see that now, if I wear a swimsuit or something’ (19 ). One working group member felt that patients are often uninformed about radiotherapy and that patients’ preferences are not listened to. She concluded that this was a good example of an area that required adequate information sharing at the right time.

Unanticipated disruptions cause helplessness

One-third of EBRT participants experienced either delays on the day of the EBRT session or extensions to their course owing to either machine failure or staff absences. The impacts on patients and care partners include stress, aggravation and disappointment with knock-on consequences proving to be burdensome:

…the machine broke down…but I couldn't find [the new hospital], and I got really tired and upset. I was trying to find where I was supposed to go, and nobody seemed to know, and I just managed to grab the team before they went home. I was like, ‘Give me my last radiotherapy now!’ It was down in some basement I mean. Location S is a maze. So, that was a bit stressy. (P1)

Patients who received their EBRT during the COVID-19 pandemic were unable to have their care partners (in most cases husbands) with them at key treatment stages. This isolation caused additional anxieties in the EBRT cohort as one care partner stated, ‘ it’s disappointing and it would have been nicer for me to be able to support her more…’ (P23). Similarly, a patient participant states:

…it’s anxiety level of just having that, that security blanket of having somebody there with you. (P19)

The working group discussed isolation and the emotional impact during EBRT sessions. Since EBRT continues for days and indeed weeks in some cases (5–6 weeks for all members), patients truly feel alone during this phase. They recalled overwhelming feelings of sadness during the sessions with thoughts such as, ‘ how did I get here’ . One member expressed empathy with study participants who would have had to endure further isolation during the COVID-19 pandemic period.

Straightforward sessions were met with surprise but travelling for EBRT was still a concern

Four out of the 15 participants interviewed from the EBRT cohort, stated that no side effects or other complications were experienced with one participant saying she felt like ‘ one of the lucky ones’ (P20). In the absence of side effects such as pain, burning or tiredness, patients experience a sense of surprise and relief after having received prior warnings from either clinical staff or hearing stories from friends and family.

…they said to put a couple of tubes of aloe vera, and keep in the fridge, and put it on religiously. But I was fine. I was fine. I literally had no burning. No rash, no nothing. I’d heard about friends having burns, but I just didn’t, I didn’t. (P12)

Similarly, three participants were appreciative of the fact that individual sessions of EBRT were in fact ‘ very straightforward’ (P1) and quick:

I did find the time, actually, went quite quick. It wasn’t very long; it might have been an hour. Yeah, it wasn’t too long. (P1)

Although these four participants did not experience radiation-related side effects, it should be noted that two of the four participants did, express frustrations about the burden of travelling during EBRT sessions and that the overall radiotherapy course was ‘ time-consuming’ (P2).

Disruption to normal life routines

A few participants were either employed or self-employed and described how EBRT impacted their own work performance (eg, tiredness, weakness in arm) with one person concluding, ‘ I’m an office worker but if I’d be doing a manual job, I think it might have impacted more.’ (P3). There is also the realisation that patients would likely need to adjust work sessions to accommodate for the EBRT sessions and the related side effects: ‘ I’ve worked out a part time basis to get back into work.’ (P19).

Participants shared concerns about the impact on work colleagues. One participant states: ‘ I’m the only person that does my job. So, I was acutely aware that when I’m not at work other people are picking up my job’ (P19). Similarly:

…we were a short-staffed team, I was aware that when I wasn’t there, it was putting work onto other people, and I felt I should have been there…. (P3)

The EBRT cohort also revealed the emotional toll of work-related worries and impacts, and the work guilt associated with the impact on colleagues. Similarly, the potential impact on the care partner’s work is also, clearly, a significant consideration for patients:

The first night after my first session I was in so much pain, I mean I didn’t sleep a wink the first night. It was absolute agony…it was my self-confidence, and everything was destroyed…and I didn’t dare, I didn’t want to wake my husband up. He had to go to work early, so then he could take me to radiotherapy in the afternoon. (P19)

These impacts on employment were corroborated during working group discussions. One member, commenting in particular on self-employed people, described the impact on financial standing and home life as ‘catastrophic’.

In contrast, those who had flexible hours of working were less affected, as one patient participant describes her care partner: ‘ luckily he was doing a job where could sort of pick and choose what he did and his hours, so it was all right.’ (P3).

The repetitive nature of the EBRT sessions, the travel involved and the side effects experienced all also impacted on participants’ normal daily routines. For instance, home activities such as shopping, gardening and caring responsibilities were impacted:

I think we might have cut down [caring for elderly parents] to once a week instead of two or three times… (P3)

One participant mentioned a close family member taking a week off from work to support looking after her, her husband, family pets and ‘ doing a few household chores like pushing the Hoover around’ (P22).

Severe pain brought on by EBRT was described as ‘ agony’ (P19) both during sessions and after sessions (P7). Ongoing pain months and years after the radiotherapy means patients need to settle into a new norm, now constantly having to be aware of their own ‘ limitations’ (P6):

I’m still aching like mad from [radiotherapy], that’s two years later and I’m still achy and in pain. (P6)

For working group members, these experiences were familiar. One member clarified that although there were no specific side effects from the radiotherapy the disruption to life was ‘ hugely problematic’ .

Many of the patients who received the FAST-Forward protocol included sessions on either side of a weekend resulting in a total of 7 days to complete the course. No participants complained specifically about the weekend being involved in this way however many described dedicated activities for the weekend, for example, food shopping, family commitments and short trips away which would undoubtedly be affected while in active treatment.

Conversations with participants revealed personalities play a role in patients’ cancer journey. One participant felt the emotional impact of radiotherapy treatment (and the subsequent withdrawal of routine contact with healthcare staff) more than all the others. The anxieties associated with this perceived void and the mental health impact itself are disruptive to re-engaging with normal life and routines:

…you’ve got people checking on you as in consultants or the breast care specialist nurses, your GP, the radiographer, people ringing you, checking on you, you’re seeing them all the time. After the radiotherapy, I’m suddenly though on my own now. I didn’t realise it was a real security blanket…it was so reassuring to seeing the consultant and seeing this nurses every day. That was the bit where I took a bit of a dive…I had two or three days where I couldn’t stop crying, I thought, ‘Oh I’m on my own now’… (P12)

There were also those who demonstrated a pragmatic mindset viewing any discomfort and impactful delays associated with EBRT sessions as realities to, in effect, take in their stride, ‘ any inconvenience, you just get on with it.’ (P20 )

Travel is clearly an uncomfortable reality and a demanding aspect of receiving EBRT. Many participants complained about the repeated journeys required for EBRT sessions. The burden has been described as ‘ dreadful’ (P7) with people feeling ‘ exhausted’ particularly where the effects of radiotherapy (tiredness and pain) are felt. The burden of travel also manifests as experiencing a longer day overall as well as the sheer cost of public transport used to make the trips independently:

It’s a pain having to go to Location S, there’s a hospital there where the bus doesn’t even go. So, from Location O, I have to get a bus from here to Location H, then wait half an hour, then from Location H to Location W, bus station, then a taxi to the hospital. That all costs 30 quid and is time-consuming, and when you’re sore, it’s not ideal. (P2)

In the majority of cases, there is a reliance on others (the husband but on occasion friends or children) to drive participants to the EBRT sessions. While there are no direct statements indicating a burden to care partners, it is important to note that in these cases both the patient and the care partner endure the repeated journeys:

My husband drove…I’m not a good driver…I certainly can’t park so it was good that he went with me because in case, if something went wrong or something because he’s like my rock he is. (P3)

The location of the EBRT sessions is critical to the quality of patient experience and when participants were presented with two hospitals to choose from it was clearly valued:

…it’s the same surgeons, all the same team, who were in Hospital W or B. I opted for Hospital B, it’s nearer to me and I could get to Hospital B easily, whereas Hospital W was an ordeal for me. (P21)

Two participants who were retired and for who the location of the hospital was particularly close indicated that travel was not a burden and considered themselves ‘ very lucky’ (P22), though of note, one of these participants experienced no EBRT side effects which may have contributed to relatively positive experience.

In contrast to many of the experiences described above, one working group member shared that she was relieved to have regained her independence since she was able to travel to her EBRT sessions herself. However, the working group notes that all their experiences included a difficult period of receiving chemotherapy first where radiotherapy was viewed as the ‘lesser of evils’.

Experience characterised by discomfort from side effects

A wide range of side effects, clearly attributed to EBRT, were reported by the vast majority of participants and this characterises an important part of the EBRT experience. These included varying intensities of tiredness; burning (from warm sensation to blistered and sore); skin-related conditions (dryness, itchiness, rash); pain; and breast size and density changes. The most common complaint was tiredness:

…there were 3 or 4 days the following week when I just had to go to bed, or just have to, you know, lie on the sofa in the afternoon, or you know I was just really bombed out, and I’m not someone who goes to bed and afternoon normally, I’m always busy, and but I had to. I was knackered. (P12)

EBRT sessions can be very uncomfortable. Severe pain, described as ‘ agony’ (P7, P19) was experienced by two participants. One individual, unable to withstand the pain and the tiredness experienced, made an independent decision to stop attending the sessions for a few days:

I was very tired…I think I might have missed a few days, because I couldn’t make it in between…I thought I’ve done so much now, I’m not going to go anymore because it was really, really hurting…I just wanted it to end and go away? And not think about it anymore basically. (P7)

Patients experienced some side effects such pain in the breast or weakness in the arm for a prolonged period—months and years after the EBRT sessions. There were also reports of new symptoms requiring follow-up that were attributed to EBRT. One participant (P8), who felt uninformed about the ‘long-term, lasting and late effects of radiotherapy’ had developed a new pain under her ribs—she reflected:

I would not have had radiotherapy, and I would not be beating myself up about having had it now had I been given the full information about the long-term effects. You know, it’s life-shortening, radiotherapy is life shortening in itself like chemotherapy. (P8)

During discussions at the second working group meeting, members were not surprised by the insights captured from study participants and felt strongly that there were ‘no positives’ from EBRT (particularly when compared with TARGIT-IORT). One member reflecting on their experience with EBRT stated they came away thinking ‘almost anything is better than this.’ (WG member)

Specific anxieties about receiving EBRT

Discussions with the EBRT cohort revealed three main anxieties associated with receiving radiotherapy. First, while there is evidence that more information early on (particularly from consultants) helps to reduce worry, stories of radiotherapy experiences from friends and family members can raise concerns and anxiety levels:

I only knew what I knew as a lay person, you know, various friends have had radiotherapy, unfortunately, people know a lot of people who have all these sort of things… I’d heard about friends having burns… (P12) …and actually, talking to another friend, she said she would do chemotherapy any day over radiotherapy because of how the radiotherapy, the pushing around and making you feel like a piece of meat, how it how it made her feel. (P19)

The second concern was the potential for radiation to cause harm: (a) so soon after surgery and (b) to healthy tissue and organs: ‘ You’ve got to heal a bit; you can’t go straight into radiotherapy because obviously you’re as raw as hell’ (P6). Two participants in particular experienced discomfort in their arms during their EBRT sessions—one participant had a number of lymph nodes removed from the armpit and one participant developed a seroma which is an abnormal accumulation of fluid following surgery. A working group member shared a similar experience where the development of seroma delayed the start of her radiotherapy course.

Another participant who was particularly concerned about unnecessary radiation exposure requested that only half the breast be irradiated because she wanted ‘ the absolute minimum’ (P8). Similarly, another care partner described his wife’s concerns:

One thing is that my wife was worried about was the radiotherapy because obviously there is this thing with radiotherapy, particularly on the breast, of potential damage to the lungs and she was very concerned about that. (P23)

Third, since many of the participants received their EBRT during the COVID-19 pandemic, a few expressed worries about potential delays either due to staff shortages, protocol-driven cancellations (ie, limiting patient numbers) or themselves contracting COVID-19 (since multiple visits are required with EBRT) and thereby being unable to attend hospital:

But COVID was going on and I remember being so scared that my appointments would be cancelled. (P12)

Targeted Intraoperative radiotherapy using Intrabeam

Perception that targit-iort is efficient and aggravation-free.

Of the 14 TARGIT-IORT participants interviewed, 11 indicated the one-off feature of the procedure was appealing. There are many references to how quickly the procedure was completed ‘ it’s lovely to get it all done and finished with on the day’ (P26). Similarly:

…having it done and dusted, and then then waving goodbye at the hospital gates, it was like why, why would I say, ‘No thank you’? (P16)

As a consequence of this efficiency, there is relief that the procedure permitted radiotherapy to be administered without any COVID-19-related delays, or exposure to the COVID-19 virus during travel or hospital during the multiple visits for EBRT, or complications for which three participants had expressed initial concerns:

I was just delighted that it was dealt with really, really quickly, because back at that time the news was full of things where, you know, because of COVID-19, you know, everything has been delayed, and people not getting cancer treatment and that was one of my, I remember having that conversation with the consultant and said, ‘Look are we going to be delayed’. (P25)

There is a similar relief detected in participants discussing the potential positive impact TARGIT-IORT can have on patient’s mental health as one care partner states:

…the alternative would have been [EBRT]… her symptoms of depression are she gets very, very tired… so intuitively our reaction to [TARGIT-IORT] was… actually quite a good idea. (P24)

Going through a cancer diagnosis and receiving treatment was clearly an emotional time. One participant was impressed with TARGIT-IORT precisely because the efficient delivery of radiotherapy facilitates her moving on quickly:

…the beauty of intraoperative radiotherapy is that I could say ‘OK, been there, done that, move on. (P9)

Convenience of performing TARGIT-IORT during surgery is valued

Most participants from the TARGIT-IORT cohort shared why they preferred to receive radiotherapy at the same time as the surgery. There is a recognition of the convenience that TARGIT-IORT brings as a result of not having to attend hospital on multiple occasions, for example, less travel and car parking and supporting independence (particularly for retired individuals):

It’s my choice to have [TARGIT-IORT] because I thought that it was a better option for me particularly because I live on my own and it would allow me to be more independent. (P18)

While the majority of participants were retired, those who did have young children felt TARGIT-IORT supports their caring responsibilities: ‘ I’ve got a [child] and I’ve got to look after him… This is a better way to go…’ (P14). Additionally, one retired participant who valued the independence TARGIT-IORT facilitated concluded it would also suit younger, busy, women well:

…particularly for younger women this would be an extremely good thing, if they're working, it allows them to get back to work without that constant interruption and if they've got a young family. (P18)

Many participants were able to draw from stories and experiences they had heard from friends and families. The apparent inconvenience and impact of daily radiotherapy doses discouraged patients from EBRT when TARGIT-IORT was presented as an option. One participant whose father received daily doses for prostate cancer felt she would ‘ rather get it all over in one go’ (P10). Similarly:

[TARGIT-IORT] was perfect, because it just meant I didn't have to queue up in the car park with the other poor people having radiotherapy, and I did have friends who had serious cancers who were having radiotherapy at the time, and it was just miserable. (P9)

There is also a perception that with TARGIT-IORT recovery times are likely to be faster since it would signify the end of their cancer treatment: ‘ I’m going to get [TARGIT-IORT] and it’s done’ (P16) and ‘ I can just then get on and recover’ (P4). Another participant summarises her main reasons for opting to receive TARGIT-IORT:

So, there were probably 3 reasons I went for [TARGIT-IORT]. You know, COVID, convenience, and the fact that I thought, you know, ultimately, I’d probably recover quicker. (P9)

Only one participant from the TARGIT-IORT cohort, a care partner, described a significant logistical impact due to his wife’s cancer treatment in general:

…created quite a challenge really for me, I mean, I was never going to moan about it, I wasn’t the one who just had cancer surgery! But you know, it meant the days suddenly got very challenging… (P25)

Perception TARGIT-IORT is a safer alternative to standard practice

Five participants felt that they did not experience any complications as a result of TARGIT-IORT and were able to resume their normal activities quickly. While there are a few cases of soreness and itchiness that participants specifically attributed to TARGIT-IORT, most participants did not report the range of side effects seen in the EBRT cohort. As a result, participants gave their endorsements for TARGIT-IORT, respectively:

I moved around, I got up, got changed, got dressed. It was surprising actually, this is why I’ve decided to do this, if this is what it gives you then everyone should have it. You know you don't need to feel debilitated, and you can carry on with your life. I've got a [child], and I've got to look after him. So, if you can, why not. This is a better way to go if the prognosis allows it. (P14) There were no, no after-effects, no problems. It all healed up very well, because it was quite a small incision anyway and very, very successful. (P28)

The majority of participants felt the procedure prevented healthy tissue and organs from being unnecessarily exposed to radiation because ‘ the radiotherapy is directed immediately where the lump [is]’ (P17).

I confess I heard that and thought ‘God, that’s a bloody good idea, why don’t they do that more often?’. Because obviously if you don’t have to beam through loads of flesh and muscle to get at what you're aiming for then that’s got to be better to be honest. (P24)

A few participants described side effects (soreness, tiredness), precautions (new bra needed, seatbelt cushion) and restrictions (no pressure, sport, lifting), however, they were unable to clearly attribute whether these were related to the surgery or the TARGIT-IORT procedure since both occur at the same time.

…yeah, my arm was a little bit sore…I’m sure it must have been the radiotherapy or the operation, I don’t know. (P29) …a special seat belt cushion that protects your breast from the seat belt and I had one another cushion under my breast supporting it… (P11)

Novel nature of TARGIT-IORT impresses while prompting early caution

Although it has been in use for the last 25 years since the first case was done in 1998 TARGIT-IORT is seen as novel and innovative with advantages acknowledged over EBRT. The decision to proceed with TARGIT-IORT is widely considered ‘ easy’ (P28) or ‘ intuitive’ (P24) or a ‘ no brainer’ (P4):

…well, you’re in there, so you might as well get on and do it and that would surely save the need for me having to come back, I can then just get on and recover basically…it was a no brainer for me, an absolute no brainer. (P4)

However, a few participants described their initial concerns since TARGIT-IORT was introduced by the consultants as a clinical trial and was largely unheard or ‘ unknown’ (P9). Care partners, often husbands and sometimes participants’ children wanted to carry out their own research to help making an informed decision about TARGIT-IORT. One participant had already felt she was convinced by the consultant’s explanation and the advantages over EBRT, however, her daughter, who worked in healthcare, stated ‘ …‘hold on a minute, we need to look at the statistics and the recovery times, side effects’…’ (P10). Similarly, another participant’s husband wanted an opportunity to ask the consultant more questions to help feel more reassured:

…but [care partner] just wanted to have the conversation around the intraoperative radiotherapy because it was an unknown really. (P9)

It should be noted that many of the participants were either themselves or their close family (eg, husband) highly educated, often with a science-based background and were able to explore clinical study papers and statistics: ‘ I’ve got a little statistical training…so I looked at the stats and what the mean variation was…what the levels of certitude at either end of the scale were…’ (P24).

TARGIT-IORT patients have high information needs

As mentioned above, due to the relative novelty of TARGIT-IORT and in the absence of experiences of TARGIT-IORT among participants’ friends and family, reliable information from trustworthy sources is critical. The majority of participants (in both EBRT and TARGIT-IORT cohorts) displayed high levels of trust in their consultant. Receiving adequate information from them about TARGIT-IORT, particularly due to its initial availability via a clinical trial, was appreciated:

I think what was good was the way that it was explained in the first place and what the pros and cons were, or if in fact, there weren't any cons really at all…So, you know, we were told that the treatment, doing it during the operation, is just as effective but it would mean that you would have no subsequent radiotherapy and, you know, of course I’m young and foolish, I assume that to be true, we trust the doctor… (P25) [The consultant] said’ ‘This is this, that is that…pluses and minus’…gone through pros and cons and I had made up my mind that that was a good way to go. (P14)

Working group members could relate closely to this subtheme of trust. They explained that the retrospective perception of TARGIT-IORT was always likely to be a ‘no brainer’, however, for a patient going through the highly emotionally charged process of receiving their diagnosis and treatment, at a time when they are already overwhelmed with new information, the relationship with the doctor is important:

…if it’s being offered to you, it’s important how it’s being offered to you. We put out trust in, so much, our doctors. (WG member)

Two participants described receiving explanations from radiation oncologists during their presurgery appointment, however, these discussions were not influential in helping to decide which type of radiotherapy they would receive. A few participants were wary of using the Internet to search for information related to their treatment options: ‘ I’m very cautious of what information I take in from Google’ (P4). However, the majority did conduct their own Internet searches to bolster their understanding of TARGIT-IORT:

I then went away and looked the bugger up, and then you could learn for yourself a little bit, reading between the technical stuff, what it’s all about, the success rate is there or there about the same, it’s not wonderful but for me, it was a no brainer. (P16)

The provision of information was discussed on a number of occasions by working group members. Simple and clear language is particularly important at a time when patients are already in a vulnerable, stressed and emotional state:

…you are so blindsided…the normal way you operate doesn’t necessarily apply. (WG member)

Working group members pointed to the need for information sources to be created adequately in the first place, for example, being written by patients/care partners who possess the lived experiences and so are able to elaborate on the areas that matter.

…there should never be a need for a patient to go home and want to Google, you should go home with the information in hand or go home with reputable evidence-based sources of information. (WG member)

The primary finding of this study is that the subjective experiences of patients and care partners receiving EBRT or TARGIT-IORT differ significantly. Strong recurring themes of appreciation and recognition of innovation, convenience, absence of side effects and lack of disruption to life have emerged from the TARGIT-IORT cohort while in the EBRT cohort, we have largely heard about discomfort and disruption to life. These themes—centring around (a) treatment procedure itself; (b) impact on QoL and (c) information needs—were presented to and were validated by a patient-led working group.

Patients and care partners involved in this study described numerous challenges, concerns and dissatisfaction with elements of the EBRT procedure while processing a difficult and emotional diagnosis. These findings are consistent with the existing literature on EBRT experience. 25 Probst et al 25 also identified procedural grievances, for instance, patients described the radiotherapy sessions as ‘dehumanising’, ‘emotionally draining’ and complained about the tattoos being a permanent reminder of the cancer. Previous studies exploring patient-perceived barriers to radiotherapy include patients’ fear surrounding radiation toxicity which can result in non-compliance and insufficient treatment. 13 40 In fact, research has identified that fears and anxiety regarding the EBRT experience can influence a patient’s decision to opt for a mastectomy over EBRT, despite the latter having equivalent if not non-inferior survival rates. 30 Several studies have demonstrated that as the distance from radiotherapy centre increases, the rate of mastectomy also increases. 41–45 Indeed, this was the primary patient-centric reason that the TARGIT-IORT procedure was originally conceived. 10–12 46

Our study demonstrates the need for improvements in the way EBRT is delivered and has implications for practice that extend to cases where patients are not eligible for TARGIT-IORT. In stark contrast, those receiving TARGIT-IORT have no awareness or recollection of the procedure since radiation is administered during surgery. Patients and care partners found this feature particularly appealing which contributed to their decision to opt for TARGIT-IORT. Indeed, TARGIT-IORT has been widely adopted elsewhere and treated 45 000 patients across 38 countries. 6

A high proportion of our EBRT cohort (12/15) received the FAST-Forward regimen. This regimen of highly compressed higher-dose-per-fraction radiotherapy was adopted in the UK even before the results of the FAST-Forward trial were published with the aim of reducing waiting time pressures during the early part of the COVID-19 pandemic. We recognise this 5-day regimen is indeed not adopted elsewhere in the world—it has much higher toxicity—19 times higher fibrosis and a quarter of women reporting hardened breasts 3 and this toxicity is seen even with the short follow-up of the FAST-Forward trial. 47 48 It is noteworthy that a large part of the patient’s perceived benefit came from the immediacy of TARGIT-IORT due to its administration during the same anaesthetic as their lumpectomy, the resulting convenience and the absence of additional hospital visits for radiotherapy that would be otherwise required for EBRT. In our study, this benefit of TARGIT-IORT was perceived by patients even though the majority of the comparator group received EBRT over just 5 days rather than the international standard of 3 weeks. It is, therefore, likely that the contrasting experience of patients may have even higher significance and the perceived benefit may be greater when TARGIT-IORT is compared with 3 weeks of EBRT.

Patients in the study who received TARGIT-IORT had been given the option to have it because they fulfilled the eligibility criteria ( table 1 ). Since patients made a conscious choice, it is plausible that the results of this study could be biased favouring TARGIT-IORT. However, the authors of this study submit that patients should be given a choice. Our study shows that those who choose TARGIT-IORT have a positive perception of treatment and the overall experience is better than those who opted for EBRT. Others have shown that if given a choice between no radiotherapy, mastectomy, EBRT and TARGIT-IORT, 75% of patients preferentially choose TARGIT-IORT. 24

It is evident that QoL-related benefits and impacts are a central component of radiotherapy lived experiences. Compared with TARGIT-IORT, EBRT has a prolonged impact on patients and perhaps a compounded impact on QoL where patients live alone (lack emotional or practical support), do not drive (reliance on others or public transport with additional costs and travel time) or have caring responsibilities (partners, parents, children and pets). Travel and mobility issues have been recognised as barriers already 49 as has the inconvenience of a prolonged treatment plan which can affect those living in remote areas even more. 13 Our findings demonstrate the advantages TARGIT-IORT offers to those who are eligible. All participants in our study acknowledged the efficiency of the procedure with many drawn to the option (over EBRT) because it was considered ‘straightforward’ and ‘over-and-done’ during surgery. The benefits of TARGIT-IORT to patients in terms of cost, travel time and distance have been demonstrated, in principle, elsewhere. 49 50 Furthermore, the environmental and social impact of the substantially more travel required for EBRT, and a huge reduction in carbon footprint from cancer treatment by use of TARGIT-IORT has also been well documented. 20

In our study, inconveniences and logistical complications were exacerbated by EBRT side effects which were recognised as a key characteristic of the EBRT patient experience and have implications on QoL. Stanton et al 51 investigated factors affecting QoL during and after radiotherapy and found that functional impacts of treatment, particularly breast-specific pain (eg, mobility) are important correlates of QoL. In addition, Schnur et al 27 showed that key patient concerns include the timing of side effects and the impact of side effects on self-esteem affecting patients’ perception of being attractive, good workers, patients and parents. Another study supports these findings and also shares one case of such extreme physical discomfort (pain, burning, etc) that the patient admitted she had considered ending treatment and another saying she would never choose to have radiotherapy again due to the burning sensation. 28 Our study has captured similar cases. This study also underscores the emotional toll, anxieties and stresses that disruptions to life (eg, work-related) cause and have been heard at a NICE Committee meeting. 52 There were fewer reports of side effects directly attributed to TARGIT-IORT in our findings. This is consistent with a study comparing TARGIT-IORT with EBRT (quantitatively) in which patients receiving TARGIT-IORT also reported less pain, fewer breast, and arm symptoms, and better everyday functioning when compared with patients receiving EBRT. 14 We recognise that our study has found stark differences in patient experience and perception between TARGIT-IORT and EBRT. This can seem obvious because patients with TARGIT-IORT have almost no poor experience in relation to actually receiving the treatment (mainly because they are under general anaesthetic when it is given). Our findings resonate with others who also report the negative patient experiences with EBRT and have suggested interventions to improve them. 25 The important qualitative patient benefits identified in this study are of course in addition to the quantitatively proven significant reduction in non-breast cancer deaths, and an improved overall survival in patients with grade 1 and grade 2 cancers within the randomised TARGIT-A trial. 7 However, our study does detect apparent patient obscurity between surgery-linked or TARGIT-IORT-linked side effects—this clearly needs to be addressed through appropriate education and adequate information provision.

Results from our study cohorts point to the need for improvements in communication and information provision. The role of high-quality communication by healthcare staff and access to emotional support services, particularly when radiotherapy treatment ends has been highlighted already. 26 Previous research has also identified that patients can often feel mystified by radiotherapy (EBRT), how it works and will have anxieties about life and health after radiotherapy 27 or feel disempowered and lacking the ability to make an informed choice. 25 In our study, working group members emphasised the importance of trust in connection with information provision, particularly during an emotional cancer diagnosis. Members felt a number of study findings could be addressed adequately by effectively communicating the right information at the right time. Examples include letting participants know clearly that tattoos will be permanent; what the immediate and long-term side effects of both radiotherapy types are; understanding the side effects of surgery thereby avoiding confusion with TARGIT-IORT; ensuring TARGIT-IORT explanations are always supplemented with lay language overviews of the efficacy and safety profile compared with EBRT. One study showed that more than 90% of patients felt that if they were more informed about radiotherapy, they would be less scared about it. 30 The working group advocated for any shared information, such as leaflets, to be written by patients, that is, those who have experiences of receiving radiotherapy, and therefore, have an awareness of where there are likely to be challenges in understanding treatments and their impacts clearly. Similarly, considerations also ought to be given to ensuring people with learning disabilities and communication difficulties are able to make an informed choice by developing accessible information. To satisfy ‘valid consent’, doctors in the UK are now obliged to follow the new GMC guidelines underlining the essential nature of adequate patient information, 53 about all proven treatment options, even if they are not available at their own centre. In the UK, this powerful principle is now fully enshrined in law (Montgomery vs Lancashire Health Board, 2015). 54 55 The substantially better patient perception and experience documented in this study need to be included during consultations with patients when discussing treatment options before they have their surgery for breast cancer.

This qualitative study, co-led by patients, uncovered detailed lived experiences of receiving either EBRT or TARGIT-IORT from patients treated for early breast cancer, as well as those of their care partners. The research demonstrated a patient-perceived superiority of TARGIT-IORT over EBRT—it is considered more efficient with less disruption to life routines. The paper also illustrates the importance of provision of accessible information about all radiotherapy treatment options from trusted sources, at the right time (before breast cancer surgery), to reduce initial anxieties and help patients make informed choices. These new insights need to be taken together with the established quantitative survival and QoL benefits of TARGIT-IORT over EBRT. We believe that these deep insights into the patient’s perspective will substantially improve our understanding of the lived experiences of patients with breast cancer and will help clinicians, patients and policy-makers to comprehensively consider how access to better treatments can improve patients’ lives.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

This study involves human participants and was approved by Health and Social Care Research Ethics Committee B (HSC REC B), Office for Research Ethics Committees Northern Ireland (ORECNI). IRAS Project ID number: 320976. Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors thank the patients and care partners who volunteered to help in development of the research question, helping design the study and outcome measures. The authors thank patients and care partners (the study participants) who volunteered to participate in this study. We are grateful to them for giving up their time and sharing their treatment experiences and valuable insights during a difficult period in their lives for the benefit of science and clinical research.

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X @jsvaidya

Contributors SKB, NS, CH, ME-O'C, SF, DW and RW were responsible for the study concept and design. SL and GL identified patients who met the eligibility criteria. SL, GL and JSV contributed to the study design. GL posted cover letters and recruitment adverts to all identified patients. SKB, NS and JR collected the data. SKB and NS analysed and conducted the thematic analysis from the data. ME-O'C, SF, DW and RW approved the initial report. SKB and CH wrote the first draft of this manuscript. JSV and all other authors were involved in interpreting the data and made substantial contributions to the intellectual content of the manuscript and approved the final version. The authors took full responsibility for the manuscript. SKB is responsible for the overall content (as guarantor).

Funding The study was sponsored by MediPaCe. Unrestricted funding was provided to MediPaCe by Carl Zeiss Medtech AG. The manufacturers of the Intrabeam device (Carl Zeiss Medtech AG) did not have any part in concept, design, or management of the study, or in data analysis, data interpretation, or writing of the report. A grant/award number was not issued for the funder.

Competing interests This qualitative study was initiated by MediPaCe, a patient engagement and patient research company. The manufacturers of the TARGIT-IORT device (Carl Zeiss Medtech AG) did not have any part in concept, design, or management of the study, or in data analysis, data interpretation, or writing of the report. Authors SKB, NS, CH and JR are employed at MediPaCe. MediPaCe received payment to independently plan, coordinate and conduct this study. JSV declares Support from University College London Hospitals (UCLH)/ UCL Comprehensive Biomedical Research Centre, UCLH Charities, HTA, NIHR, National Institute for Health Research (NIHR) Health Technology Assessment (HTA) programme, Department of Health and Social Care, UK Ninewells Cancer Campaign and Cancer Research Campaign (now Cancer Research UK); Research grant from Photoelectron Corp (1996–1999) and for supporting data management at the University of Dundee (Dundee, UK, 2004–2008) and travel reimbursements and honorariums from Carl Zeiss. SL and GL declare no conflicts of interest.

Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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