peer review in qualitative research

Criteria for Good Qualitative Research: A Comprehensive Review

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• Published: 18 September 2021
• Volume 31 , pages 679–689, ( 2022 )

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

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Introduction

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

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

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

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

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

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

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

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

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

Criteria for Evaluating Qualitative Studies

Fundamental criteria: general research quality.

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

Qualitative Research: Interpretive Paradigms

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

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

Improving Quality: Strategies

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

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

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

Essential elements of a conceptual framework

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

How to Assess the Quality of the Research Findings?

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

Quality Checklists: Tools for Assessing the Quality

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

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

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

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

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

Conclusions, Future Directions, and Outlook

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

Prospects : A Road Ahead for Qualitative Research

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

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

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

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

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

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

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

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

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

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Article Contents

Introduction, when to use qualitative research, how to judge qualitative research, conclusions, authors' roles, conflict of interest.

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Qualitative research methods: when to use them and how to judge them

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K. Hammarberg, M. Kirkman, S. de Lacey, Qualitative research methods: when to use them and how to judge them, Human Reproduction , Volume 31, Issue 3, March 2016, Pages 498–501, https://doi.org/10.1093/humrep/dev334

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In March 2015, an impressive set of guidelines for best practice on how to incorporate psychosocial care in routine infertility care was published by the ESHRE Psychology and Counselling Guideline Development Group ( ESHRE Psychology and Counselling Guideline Development Group, 2015 ). The authors report that the guidelines are based on a comprehensive review of the literature and we congratulate them on their meticulous compilation of evidence into a clinically useful document. However, when we read the methodology section, we were baffled and disappointed to find that evidence from research using qualitative methods was not included in the formulation of the guidelines. Despite stating that ‘qualitative research has significant value to assess the lived experience of infertility and fertility treatment’, the group excluded this body of evidence because qualitative research is ‘not generally hypothesis-driven and not objective/neutral, as the researcher puts him/herself in the position of the participant to understand how the world is from the person's perspective’.

Qualitative and quantitative research methods are often juxtaposed as representing two different world views. In quantitative circles, qualitative research is commonly viewed with suspicion and considered lightweight because it involves small samples which may not be representative of the broader population, it is seen as not objective, and the results are assessed as biased by the researchers' own experiences or opinions. In qualitative circles, quantitative research can be dismissed as over-simplifying individual experience in the cause of generalisation, failing to acknowledge researcher biases and expectations in research design, and requiring guesswork to understand the human meaning of aggregate data.

As social scientists who investigate psychosocial aspects of human reproduction, we use qualitative and quantitative methods, separately or together, depending on the research question. The crucial part is to know when to use what method.

The peer-review process is a pillar of scientific publishing. One of the important roles of reviewers is to assess the scientific rigour of the studies from which authors draw their conclusions. If rigour is lacking, the paper should not be published. As with research using quantitative methods, research using qualitative methods is home to the good, the bad and the ugly. It is essential that reviewers know the difference. Rejection letters are hard to take but more often than not they are based on legitimate critique. However, from time to time it is obvious that the reviewer has little grasp of what constitutes rigour or quality in qualitative research. The first author (K.H.) recently submitted a paper that reported findings from a qualitative study about fertility-related knowledge and information-seeking behaviour among people of reproductive age. In the rejection letter one of the reviewers (not from Human Reproduction ) lamented, ‘Even for a qualitative study, I would expect that some form of confidence interval and paired t-tables analysis, etc. be used to analyse the significance of results'. This comment reveals the reviewer's inappropriate application to qualitative research of criteria relevant only to quantitative research.

In this commentary, we give illustrative examples of questions most appropriately answered using qualitative methods and provide general advice about how to appraise the scientific rigour of qualitative studies. We hope this will help the journal's reviewers and readers appreciate the legitimate place of qualitative research and ensure we do not throw the baby out with the bath water by excluding or rejecting papers simply because they report the results of qualitative studies.

In psychosocial research, ‘quantitative’ research methods are appropriate when ‘factual’ data are required to answer the research question; when general or probability information is sought on opinions, attitudes, views, beliefs or preferences; when variables can be isolated and defined; when variables can be linked to form hypotheses before data collection; and when the question or problem is known, clear and unambiguous. Quantitative methods can reveal, for example, what percentage of the population supports assisted conception, their distribution by age, marital status, residential area and so on, as well as changes from one survey to the next ( Kovacs et al. , 2012 ); the number of donors and donor siblings located by parents of donor-conceived children ( Freeman et al. , 2009 ); and the relationship between the attitude of donor-conceived people to learning of their donor insemination conception and their family ‘type’ (one or two parents, lesbian or heterosexual parents; Beeson et al. , 2011 ).

In contrast, ‘qualitative’ methods are used to answer questions about experience, meaning and perspective, most often from the standpoint of the participant. These data are usually not amenable to counting or measuring. Qualitative research techniques include ‘small-group discussions’ for investigating beliefs, attitudes and concepts of normative behaviour; ‘semi-structured interviews’, to seek views on a focused topic or, with key informants, for background information or an institutional perspective; ‘in-depth interviews’ to understand a condition, experience, or event from a personal perspective; and ‘analysis of texts and documents’, such as government reports, media articles, websites or diaries, to learn about distributed or private knowledge.

Qualitative methods have been used to reveal, for example, potential problems in implementing a proposed trial of elective single embryo transfer, where small-group discussions enabled staff to explain their own resistance, leading to an amended approach ( Porter and Bhattacharya, 2005 ). Small-group discussions among assisted reproductive technology (ART) counsellors were used to investigate how the welfare principle is interpreted and practised by health professionals who must apply it in ART ( de Lacey et al. , 2015 ). When legislative change meant that gamete donors could seek identifying details of people conceived from their gametes, parents needed advice on how best to tell their children. Small-group discussions were convened to ask adolescents (not known to be donor-conceived) to reflect on how they would prefer to be told ( Kirkman et al. , 2007 ).

When a population cannot be identified, such as anonymous sperm donors from the 1980s, a qualitative approach with wide publicity can reach people who do not usually volunteer for research and reveal (for example) their attitudes to proposed legislation to remove anonymity with retrospective effect ( Hammarberg et al. , 2014 ). When researchers invite people to talk about their reflections on experience, they can sometimes learn more than they set out to discover. In describing their responses to proposed legislative change, participants also talked about people conceived as a result of their donations, demonstrating various constructions and expectations of relationships ( Kirkman et al. , 2014 ).

Interviews with parents in lesbian-parented families generated insight into the diverse meanings of the sperm donor in the creation and life of the family ( Wyverkens et al. , 2014 ). Oral and written interviews also revealed the embarrassment and ambivalence surrounding sperm donors evident in participants in donor-assisted conception ( Kirkman, 2004 ). The way in which parents conceptualise unused embryos and why they discard rather than donate was explored and understood via in-depth interviews, showing how and why the meaning of those embryos changed with parenthood ( de Lacey, 2005 ). In-depth interviews were also used to establish the intricate understanding by embryo donors and recipients of the meaning of embryo donation and the families built as a result ( Goedeke et al. , 2015 ).

It is possible to combine quantitative and qualitative methods, although great care should be taken to ensure that the theory behind each method is compatible and that the methods are being used for appropriate reasons. The two methods can be used sequentially (first a quantitative then a qualitative study or vice versa), where the first approach is used to facilitate the design of the second; they can be used in parallel as different approaches to the same question; or a dominant method may be enriched with a small component of an alternative method (such as qualitative interviews ‘nested’ in a large survey). It is important to note that free text in surveys represents qualitative data but does not constitute qualitative research. Qualitative and quantitative methods may be used together for corroboration (hoping for similar outcomes from both methods), elaboration (using qualitative data to explain or interpret quantitative data, or to demonstrate how the quantitative findings apply in particular cases), complementarity (where the qualitative and quantitative results differ but generate complementary insights) or contradiction (where qualitative and quantitative data lead to different conclusions). Each has its advantages and challenges ( Brannen, 2005 ).

Qualitative research is gaining increased momentum in the clinical setting and carries different criteria for evaluating its rigour or quality. Quantitative studies generally involve the systematic collection of data about a phenomenon, using standardized measures and statistical analysis. In contrast, qualitative studies involve the systematic collection, organization, description and interpretation of textual, verbal or visual data. The particular approach taken determines to a certain extent the criteria used for judging the quality of the report. However, research using qualitative methods can be evaluated ( Dixon-Woods et al. , 2006 ; Young et al. , 2014 ) and there are some generic guidelines for assessing qualitative research ( Kitto et al. , 2008 ).

Although the terms ‘reliability’ and ‘validity’ are contentious among qualitative researchers ( Lincoln and Guba, 1985 ) with some preferring ‘verification’, research integrity and robustness are as important in qualitative studies as they are in other forms of research. It is widely accepted that qualitative research should be ethical, important, intelligibly described, and use appropriate and rigorous methods ( Cohen and Crabtree, 2008 ). In research investigating data that can be counted or measured, replicability is essential. When other kinds of data are gathered in order to answer questions of personal or social meaning, we need to be able to capture real-life experiences, which cannot be identical from one person to the next. Furthermore, meaning is culturally determined and subject to evolutionary change. The way of explaining a phenomenon—such as what it means to use donated gametes—will vary, for example, according to the cultural significance of ‘blood’ or genes, interpretations of marital infidelity and religious constructs of sexual relationships and families. Culture may apply to a country, a community, or other actual or virtual group, and a person may be engaged at various levels of culture. In identifying meaning for members of a particular group, consistency may indeed be found from one research project to another. However, individuals within a cultural group may present different experiences and perceptions or transgress cultural expectations. That does not make them ‘wrong’ or invalidate the research. Rather, it offers insight into diversity and adds a piece to the puzzle to which other researchers also contribute.

In qualitative research the objective stance is obsolete, the researcher is the instrument, and ‘subjects’ become ‘participants’ who may contribute to data interpretation and analysis ( Denzin and Lincoln, 1998 ). Qualitative researchers defend the integrity of their work by different means: trustworthiness, credibility, applicability and consistency are the evaluative criteria ( Leininger, 1994 ).

Trustworthiness

A report of a qualitative study should contain the same robust procedural description as any other study. The purpose of the research, how it was conducted, procedural decisions, and details of data generation and management should be transparent and explicit. A reviewer should be able to follow the progression of events and decisions and understand their logic because there is adequate description, explanation and justification of the methodology and methods ( Kitto et al. , 2008 )

Credibility

Credibility is the criterion for evaluating the truth value or internal validity of qualitative research. A qualitative study is credible when its results, presented with adequate descriptions of context, are recognizable to people who share the experience and those who care for or treat them. As the instrument in qualitative research, the researcher defends its credibility through practices such as reflexivity (reflection on the influence of the researcher on the research), triangulation (where appropriate, answering the research question in several ways, such as through interviews, observation and documentary analysis) and substantial description of the interpretation process; verbatim quotations from the data are supplied to illustrate and support their interpretations ( Sandelowski, 1986 ). Where excerpts of data and interpretations are incongruent, the credibility of the study is in doubt.

Applicability

Applicability, or transferability of the research findings, is the criterion for evaluating external validity. A study is considered to meet the criterion of applicability when its findings can fit into contexts outside the study situation and when clinicians and researchers view the findings as meaningful and applicable in their own experiences.

Larger sample sizes do not produce greater applicability. Depth may be sacrificed to breadth or there may be too much data for adequate analysis. Sample sizes in qualitative research are typically small. The term ‘saturation’ is often used in reference to decisions about sample size in research using qualitative methods. Emerging from grounded theory, where filling theoretical categories is considered essential to the robustness of the developing theory, data saturation has been expanded to describe a situation where data tend towards repetition or where data cease to offer new directions and raise new questions ( Charmaz, 2005 ). However, the legitimacy of saturation as a generic marker of sampling adequacy has been questioned ( O'Reilly and Parker, 2013 ). Caution must be exercised to ensure that a commitment to saturation does not assume an ‘essence’ of an experience in which limited diversity is anticipated; each account is likely to be subtly different and each ‘sample’ will contribute to knowledge without telling the whole story. Increasingly, it is expected that researchers will report the kind of saturation they have applied and their criteria for recognising its achievement; an assessor will need to judge whether the choice is appropriate and consistent with the theoretical context within which the research has been conducted.

Sampling strategies are usually purposive, convenient, theoretical or snowballed. Maximum variation sampling may be used to seek representation of diverse perspectives on the topic. Homogeneous sampling may be used to recruit a group of participants with specified criteria. The threat of bias is irrelevant; participants are recruited and selected specifically because they can illuminate the phenomenon being studied. Rather than being predetermined by statistical power analysis, qualitative study samples are dependent on the nature of the data, the availability of participants and where those data take the investigator. Multiple data collections may also take place to obtain maximum insight into sensitive topics. For instance, the question of how decisions are made for embryo disposition may involve sampling within the patient group as well as from scientists, clinicians, counsellors and clinic administrators.

Consistency

Consistency, or dependability of the results, is the criterion for assessing reliability. This does not mean that the same result would necessarily be found in other contexts but that, given the same data, other researchers would find similar patterns. Researchers often seek maximum variation in the experience of a phenomenon, not only to illuminate it but also to discourage fulfilment of limited researcher expectations (for example, negative cases or instances that do not fit the emerging interpretation or theory should be actively sought and explored). Qualitative researchers sometimes describe the processes by which verification of the theoretical findings by another team member takes place ( Morse and Richards, 2002 ).

Research that uses qualitative methods is not, as it seems sometimes to be represented, the easy option, nor is it a collation of anecdotes. It usually involves a complex theoretical or philosophical framework. Rigorous analysis is conducted without the aid of straightforward mathematical rules. Researchers must demonstrate the validity of their analysis and conclusions, resulting in longer papers and occasional frustration with the word limits of appropriate journals. Nevertheless, we need the different kinds of evidence that is generated by qualitative methods. The experience of health, illness and medical intervention cannot always be counted and measured; researchers need to understand what they mean to individuals and groups. Knowledge gained from qualitative research methods can inform clinical practice, indicate how to support people living with chronic conditions and contribute to community education and awareness about people who are (for example) experiencing infertility or using assisted conception.

Each author drafted a section of the manuscript and the manuscript as a whole was reviewed and revised by all authors in consultation.

No external funding was either sought or obtained for this study.

The authors have no conflicts of interest to declare.

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• Research article
• Open access
• Published: 18 May 2020

What feedback do reviewers give when reviewing qualitative manuscripts? A focused mapping review and synthesis

• Oliver Rudolf HERBER   ORCID: orcid.org/0000-0003-3041-4098 1 ,
• Caroline BRADBURY-JONES 2 ,
• Susanna BÖLING 3 ,
• Sarah COMBES 4 ,
• Julian HIRT 5 ,
• Yvonne KOOP 6 ,
• Ragnhild NYHAGEN 7 ,
• Jessica D. VELDHUIZEN 8 &
• Julie TAYLOR 2 , 9  

BMC Medical Research Methodology volume  20 , Article number:  122 ( 2020 ) Cite this article

17 Citations

34 Altmetric

Metrics details

Peer review is at the heart of the scientific process. With the advent of digitisation, journals started to offer electronic articles or publishing online only. A new philosophy regarding the peer review process found its way into academia: the open peer review. Open peer review as practiced by BioMed Central ( BMC ) is a type of peer review where the names of authors and reviewers are disclosed and reviewer comments are published alongside the article. A number of articles have been published to assess peer reviews using quantitative research. However, no studies exist that used qualitative methods to analyse the content of reviewers’ comments.

A focused mapping review and synthesis (FMRS) was undertaken of manuscripts reporting qualitative research submitted to BMC open access journals from 1 January – 31 March 2018. Free-text reviewer comments were extracted from peer review reports using a 77-item classification system organised according to three key dimensions that represented common themes and sub-themes. A two stage analysis process was employed. First, frequency counts were undertaken that allowed revealing patterns across themes/sub-themes. Second, thematic analysis was conducted on selected themes of the narrative portion of reviewer reports.

A total of 107 manuscripts submitted to nine open-access journals were included in the FMRS. The frequency analysis revealed that among the 30 most frequently employed themes “writing criteria” (dimension II) is the top ranking theme, followed by comments in relation to the “methods” (dimension I). Besides that, some results suggest an underlying quantitative mindset of reviewers. Results are compared and contrasted in relation to established reporting guidelines for qualitative research to inform reviewers and authors of frequent feedback offered to enhance the quality of manuscripts.

Conclusions

This FMRS has highlighted some important issues that hold lessons for authors, reviewers and editors. We suggest modifying the current reporting guidelines by including a further item called “Degree of data transformation” to prompt authors and reviewers to make a judgment about the appropriateness of the degree of data transformation in relation to the chosen analysis method. Besides, we suggest that completion of a reporting checklist on submission becomes a requirement.

Peer Review reports

Peer review is at the heart of the scientific process. Reviewers independently examine a submitted manuscript and then recommend acceptance, rejection or – most frequently – revisions to be made before it gets published [ 1 ]. Editors rely on peer review to make decisions on which submissions warrant publication and to enhance quality standards. Typically, each manuscript is reviewed by two or three reviewers [ 2 ] who are chosen for their knowledge and expertise regarding the subject or methodology [ 3 ]. The history of peer review, often regarded as a “touchstone of modern evaluation of scientific quality” [ 4 ] is relatively short. For example, the British Medical Journal (now the BMJ ) was a pioneer when it established a system of external reviewers in 1893. But it was in the second half of the twentieth century that employing peers as reviewers became custom [ 5 ]. Then, in 1973 the prestigious scientific weekly Nature introduced a rigorous formal peer review system for every paper it printed [ 6 ].

Despite ever-growing concerns about its effectiveness, fairness and reliability [ 4 , 7 ], peer review as a central part of academic self-regulation is still considered the best available practice [ 8 ]. With the advent of digitisation in the late 1990s, scholarly publishing has changed dramatically with many journals starting to offer print as well as electronic articles or publishing online only [ 9 ]. The latter category includes for-profit journals such as BioMed Central ( BMC ) that have been online since their inception in 1999, with an ever evolving portfolio of currently over 300 peer-reviewed journals.

As compared to traditional print journals where individuals or libraries need to pay a fee for an annual subscription or for reading a specific article, open access journals such as BMC, PLoS ONE or BMJ Open are permanently free for everyone to read and download since the cost of publishing is paid by the author or an entity such as the university. Many, but not all, open access journals impose an article processing charge on the author, also known as the gold open access route, to cover the cost of publication. Depending on the journal and the publisher, article processing charges can range significantly between US$100 and US$5200 per article [ 10 , 11 ].

In the digital age, a new philosophy regarding the peer review process found its way into academia, questioning the anonymity of the closed system of peer-review as contrary to the demands for transparency [ 1 ]. The issue of reviewer bias, especially concerning gender and affiliation [ 12 ], led not only to the establishment of double-blind review but also to its extreme opposite: the open peer review system [ 8 ]. Although the term ‘open peer review’ has no standardised definition, scholars use the term to indicate that the identities of the authors and reviewers are disclosed and that reviewer reports are openly available [ 13 ]. In the late 1990s, the BMJ changed from a closed system of peer review to an open system [ 14 , 15 ]. During the same time, other publishers such as some journals in BMC followed the example of opening up their peer review.

While peer review reports have long been hidden from the public gaze [ 16 , 17 ], opening up the closed peer review system allows researchers to access reviewer comments, thus making it possible to study them. Since then, a number of articles have been published to assess reviews using quantitative research methods. For example, Landkroon et al. [ 18 ] assessed the quality of 247 reviews of 119 original articles using a 5-point Likert scale. Similarly, Henly and Dougherty [ 19 ] developed and applied a grading scale to assess the narrative portion of 464 reviews of 203 manuscripts using descriptive statistics. The retrospective cohort study by van Lent et al. [ 20 ] assessed peer review comments on drug trials from 246 manuscripts to investigate whether there is a relationship between the content of these comments and sponsorship using a generalised linear mixed model. Most recently, Davis et al. [ 21 ] evaluated reviewer grading forms for surgical journals with higher impact factors and compared them to surgical journals with lower impact factors using Fisher’s exact test.

Despite the readily available reviewer comments that are published alongside the final article of many open access journals, to the best of our knowledge no studies exist to date that used – besides quantitative methods – also qualitative methods to analyse the content of reviewers’ comments. Identifying (negative) reviewer comments will help authors to pay particular attention to these aspects and assist prospective qualitative researchers to understand the most common pitfalls when preparing their manuscript for submission. Thus, the aim of the study was to appraise the quality and nature of reviewers’ feedback in order to understand how reviewers engage with and influence the development of a qualitative manuscript. Our focus on qualitative research can be explained by the fact that we are passionate qualitative researchers with a history in determining the state of qualitative research in health and social science literature [ 22 ]. The following research questions were answered: (1) What are the frequencies of certain commentary types in manuscripts reporting on qualitative research? and (2) What are the nature of reviewers’ comments made on manuscripts reporting on qualitative research?

We conducted a focused mapping review and synthesis (FMRS) [ 22 , 23 , 24 , 25 ]. Most forms of review aim for breadth and exhaustive searches, but the FMRS searches within specific, pre-determined journals. While Platt [ 26 ] observed that ‘a number of studies have used samples of journal articles’, the distinctive feature of the FMRS is the purposive selection of journals. These are chosen for their likelihood to contain articles relevant to the field of inquiry – in this case qualitative research published in open access journals that operate an open peer-review process that involves posting the reviewer’s reports. It is these reports that we have analysed using thematic analysis techniques [ 27 ].

Currently there are over 70 BMC journals that have adopted open peer-review. The FMRS focused on reviewers’ reports published during the first quarter of 2018. Journals were selected using a three-stage process. First, we produced a list with all BMC journals that operate an open peer review process and will publish qualitative research articles ( n  = 62). Second, from this list we selected journals that are general fields of practice and non-disease specific ( n  = 15). Third, to ensure a sufficient number of qualitative articles, we excluded journals with less than 25 hits on the search term “qualitative” for the year 2018 (search date: 16 July 2018) because chances were considered too slim to contain sufficient articles of interest. At the end of the selection process, the following nine BMC journals were included in our synthesis: (1) BMC Complementary and Alternative Medicine , (2) BMC Family Practice , (3) BMC Health Services Research , (4) BMC Medical Education , (5) BMC Medical Ethics , (6) BMC Nursing , (7) BMC Public Health , (8) Health Research Policy and Systems , and (9) Implementation Science . Since these journals represent different subjects, a variety of qualitative papers written for different audiences was captured. Every article published within the timeframe was scrutinised against the inclusion and exclusion criteria (Table  1 ).

Development of the data extraction sheet

A validated instrument for the classification of reviewer comments does not exist [ 20 ]. Hence, a detailed classification system was developed and pilot tested considering previous research [ 20 ]. Our newly developed data extraction sheet consists of a 77-item classification system organised according to three dimensions: (1) scientific/technical content, (2) writing criteria/representation, and (3) technical criteria. It represents themes and sub-themes identified by reading reviewer comments from twelve articles published in open peer-review journals. For the development of the data extraction sheet, we randomly selected four articles containing qualitative research from each of the following three journals published between 2017 and 2018: BMC Nursing , BMC Family Practice and BMJ Open . We then analysed the reviews of manuscripts by systematically coding and categorising the reviewers’ free-text comments. Following the recommendation by Shashok [ 28 ], we initially organised the reviewer’s comments along two main dimensions, i.e., scientific content and writing criteria. Shashok [ 28 ] argues that when peer reviewers confuse content and writing, their feedback can be misunderstood by authors who may modify texts in unintentional ways to the detriment of the manuscript.

To check the comprehensiveness of our classification system, provisional themes and sub-themes were piloted using reviewer comments we had previously received from twelve of our own manuscripts that had been submitted to journals that operate blind peer-review. We wanted to account for potential differences in reviewers’ feedback (open vs. blind review). As a result of this quality enhancement procedure, three sub-themes and a further dimension (‘technical criteria’) were added. For reasons of clarity and comprehensibility, the dimension ‘scientific content’ was subdivided following the IMRaD structure. IMRaD is the most common organisational structure of an original research article comprising I ntroduction, M ethods, R esults a nd D iscussion [ 29 ]. Anchoring examples were provided for each theme/sub-theme. To account for reviewer comments unrelated to the IMRaD structure, a sub-category called ‘generic codes’ was created to collect more general comments. When reviewer comments could not be assigned to any of the existing themes/sub-themes, they were noted as “Miscellaneous”. Table  2 shows the final data extraction sheet including anchoring examples.

Data extraction procedure

Data extraction was accomplished by six doctoral students (coders). On average, each coder was allocated 18 articles. After reading the reviews, coders independently classified each comment using the classification system. In line with Day et al. [ 30 ] a reviewer comment was defined as “ a distinct statement or idea found in a review, regardless of whether that statement was presented in isolation or was included in a paragraph that contained several statements. ” Editor comments were not included. Reviewers’ comments were copied and pasted into the most appropriate item of the classification system following a set of pre-defined guidelines. For example, a reviewer comment could only be coded once by assigning it to the most appropriate theme/sub-theme. A separate data extraction sheet was used for each article. For the purpose of calibration, the first completed data extraction sheet from each coder together with the reviewer’s comments was sent to the study coordinator (ORH) who provided feedback on classifying the reviewer comments. The aim of the calibration was to ensure that all coders were working within the same parameters of understanding, to discuss the subtleties of the judgement process and create consensus regarding classifications. Although the assignment to specific themes/sub-themes is, by nature, a subjective process, difficult to assign comments were classified following discussion and agreement between coder and study coordinator to ensure reliability. Once all data extraction was completed, two experienced qualitative researchers (CB-J, JT) independently undertook a further calibration exercise of a random sub-sample of 20% of articles ( n  = 22) to ensure consistency across coders. Articles were selected using a random number generator. For these 22 articles, classification discrepancies were resolved by consensus between coders and experienced researchers. Finally, all individual data extraction sheets were collated to create a comprehensive Excel spreadsheet with over 8000 cells that allowed tallying the reviewer’s comments across manuscripts for the purpose of data analysis. For each manuscript, a reviewer could have several remarks related to one type of comment. However, each type of comment was scored only once per category.

Finally, reviewer comments were ‘quantitized’ [ 31 ] by applying programming language (Python) to Jupyter Notebook, an open-source web application, to perform frequency counts of free-text comments regarding the 77 items. Among other data manipulation, we sorted elements of arrays in descending order of frequency using Pandas, counted the number of studies in which a certain theme/sub-theme occurred, conducted distinct word searches using NLTK 3 or grouped data according to certain criteria. The calculation of frequencies is a way to unite the empirical precision of quantitative research with the descriptive precision of qualitative research [ 32 ]. This quantitative transformation of qualitative data allowed extracting more meaning from our spreadsheet through revealing patterns across themes/sub-themes, thus giving indicators about which of them to analyse using thematic analysis.

A total of 109 manuscripts submitted to nine open-access journals were included in the FMRS. When scrutinising the peer review reports, we noticed that on one occasion the reviewer’s comments were missing [ 33 ]. For the remaining 108 manuscripts, reviewer comments were accessible via the journal’s pre-publication history. On close inspection, however, it became apparent that one article did not contain qualitative research, thus leaving ultimately 107 articles to work with ( supplementary file ). Considering that each manuscript could potentially be reviewed by multiple reviewers and underwent at least one round of revision, the total number of reviewer reports analysed amounted to 347 containing collectively 1703 reviewer comments. The level of inter-rater agreement for the 22 articles included in the calibration exercise was 97%. Disagreement was, for example, in relation to coding a comment as “miscellaneous” or as “confirmation/approval (from reviewer)”. For 18 out of 22 articles, there was 100% agreement for all types of comments.

Variation in number of reviewers

The number of reviewers invited by the editor to review a submitted manuscript varied greatly within and among journals. While the majority of manuscripts across journals had been reviewed by two to three reviewers, there were also significant variations. For example, the manuscript submitted to BMC Medical Education by Burgess et al. [ 34 ] had been reviewed by five reviewers whereas the manuscript submitted to BMC Public Health by Lee and Lee [ 35 ] had been reviewed by one reviewer only. Even within journals there was a huge variation. Among our sample, BMC Public Health had the greatest variance ranging from one to four reviewers. Besides, it was noted that additional reviewers were called in not until the second or even third revision of the manuscript. A summary of key information on journals included in the FMRS is provided in Table  3 .

“Quantitizing” reviewer comments

The frequency analysis revealed that the number of articles in which a certain theme/sub-theme occurred ranged from 1 to 79. Across all 107 articles, the types of comments most frequently reported were in relation to generic themes. Reviewer comments regarding “Adding information/detail/nuances”, “Clarification needed”, “Further explanation required” and “Confirmation/approval (from reviewer)” were used in 79, 79, 66 and 63 articles, respectively. The four most frequently used themes/sub-themes are composed of generic codes from dimension I (“Scientific/technical content”). Leaving all generic codes aside, it became apparent that among the 30 most frequently employed themes “Writing criteria” (dimension II) is the top ranking theme, followed by comments in relation to the “Methods” (dimension I) (Table  4 ).

Subsequently, we present key qualitative findings regarding “Confirmation/approval from reviewers” (generic), “Sampling” and “Analysis process” (methods), “Robust/rich data analysis and “Themes/sub-themes” (results) as well as findings that suggest an underlying quantitative mindset of the reviewers.

Confirmation/approval from reviewers (generic)

The theme “confirmation/approval from reviewers” ranks third among the top 30 categories. A total of 63 manuscripts contained at least one reviewer comment related to this theme. Overall, reviewers maintained a respectful and affirmative rhetoric when providing feedback. The vast majority of reviewers began their report by stating that the manuscript was well written. The following is a typical example:

“Overall, the paper is well written, and theoretically informed.” Article #14.

Reviewers then continued to add explicit praise for aspects or sections that were particularly innovative and/or well constructed before they started to put forward any negative feedback.

Sampling (methods)

Across all 107 articles there were 34 reviewer comments in relation to the sampling technique(s). Two major categories were identified: (1) composition of the sample and (2) identification and justification of selected participants. Regarding the former, reviewers raised several concerns about how the sample was composed. For instance, one reviewer wanted to know the reason for female predominance in the study and why an entire focus group was composed of females only. Another reviewer expressed strong criticism on the composition of the sample since only young, educated and non-minority white British participants were included in the study. The reviewer commented:

“ So a typical patient was young, educated and non-minority White British? The research studies these days should be inclusive of diverse types of patients and excluding patients because of their age and ethnicity is extremely concerning to me. This assumption that these individuals will “find it more difficult to complete questionnaires” is concerning ” Article #40.

This raised concerns of potentially excluding important diverse perspectives – such as extreme or deviant cases – from other participants. Similarly, some reviewers expressed concerns that relevant groups of people were not interviewed, calling into question that the findings were theoretically saturated. In terms of the identification of participants, reviewers raised questions regarding how the authors obtained the necessary characteristics to achieve purposive sampling or why only certain groups of people were included for interviews. Besides that, reviewers criticised that some authors did not mention their inclusion/exclusion criteria for selecting participants or did not specify their sampling method. For example:

“The authors state that they recruited a purposive sample of patients for the interviews. Concerning which variables was this sampling purposive? Are there any studies informing the patient selection process?” Article #61.

Hence, reviewers requested more detailed information on how participants were selected and to clearly state the type of sampling. Apart from the two key categories, reviewers made additional comments in relation to data saturation, transferability of findings, limitations of certain sampling methods and criticised the lack of description of participants who were approached but refused to participate in the study.

Details of analysis process (methods)

In 60 out of 107 articles, reviewers made comments in relation to the data analysis. The vast majority of comments stressed that authors provided scarce information about the analysis process. Hence, reviewers requested a more detailed description of the specific analysis techniques employed so that readers can obtain a better understanding of how the analysis was done to judge the trustworthiness of the findings. To this end, reviewers frequently requested an explicit statement on whether the analysis was inductive or deductive or iterative or sequential. One reviewer wrote the following comment:

“Please elaborate more on the qualitative analysis. The authors indicate that they used ‘iterative’ approaches. While this is certainly laudable, it is important to know how they moved from codes to themes (e.g. inductively? deductively?)” Article #5.

Since there are many approaches to analysing qualitative data, reviewers demanded sufficient detail in relation to the underlying theoretical framework used to develop the coding scheme, the analytic process, the researchers’ background (e.g. profession), the number of coders, data handling, length of interviews and whether data saturation occurred. Over a dozen reviewer comments were specifically in relation to the identification of themes/sub-themes. Reviewers requested a more detailed description on how the themes/sub-themes were derived from codes and whether they were developed by a second researcher working independently from each other.

“I would have liked to read how their themes were generated, what they were and how they assured robust practices in qualitative data analysis”. Article #43.

Besides that, some reviewers were in the opinion that the approach to analysis has led to a surface-level penetration of the data which was reflected in the Results section where themes were underexplored (for more detail see “ Robust/rich data analysis” below). Finally, reviewer comments that occurred infrequently included questions concerning the inter-rater reliability, competing interpretations of data, the use of computer software or the original interview language.

Robust/rich data analysis (results)

Among the 30 reviewer comments related to this theme/sub-theme, three key facets were observed: (1) greater analytical depth required, (2) suggestions for further analysis, and (3) themes are underexplored. In relation to the first point, reviewers requested more in-depth data analysis to strengthen the quality of the manuscript. Reviewers were in the opinion that authors reproduced interview data (raw data) in a reduced form with minimal or no interpretation, thus leaving the interpretation to the reader. Other reviewers referred to manuscripts as preliminary drafts that need to be further analysed to achieve greater analytical depth of themes, make links between themes or identify variations between respondents. In relation to the second point, several reviewers offered suggestions for further analysis. They provided detailed information on how to further explore the data and what additional results they would like to see in the revised version (e.g. group comparison, gender analysis). The latter aspect goes hand in hand with the third point. Several reviewers pointed out that the findings were shallow, simplistic or superficial at best; lacking the detailed descriptions of complex accounts from participants. For example:

“The results of the study are mostly descriptive and there is limited analysis. There is also absence of thick description, which one would expect in a qualitative study”. Article #34.

Even after the first revision, some manuscripts still lacked detailed analysis as the following comment from the same reviewer illustrates:

“I believe that the results in the revised version are still mostly descriptive and that there is limited analysis”. Article #34, R1.

Other, less frequently mentioned reviewer comments included lack of deviant cases or absence of relationships between themes.

Themes/sub-themes (results)

In total, there were 24 reviewer comments in relation to themes/sub-themes. More than half of the comments fell into one of the three categories: (1) themes/sub-themes are not sufficiently supported by data, (2) example/excerpt does not fit the stated theme, and (3) use of insufficient quotes to support theme/sub-theme. In relation to the first category, reviewers largely criticised that the data provided were insufficient to warrant being called a theme. Reviewers requested to provide data “from more than just one participant” to substantiate a certain theme or criticised that only a short excerpt was provided to support a theme. The second category dealt with reviewer comments that questioned whether the excerpts provided actually reflected the essence of a theme/sub-theme presented in the results section. The following reviewer comment exemplifies the issue:

“The data themes seem valid, but the data and narratives used to illustrate that don’t seem to fit entirely under each sub-heading”. Article #99.

Some reviewers provided alternative suggestions on how to call a theme/sub-theme or advised the authors to rethink if excerpts might be better placed under a different theme. The third category concerns themes/sub-themes that are not sufficiently supported by participants’ quotes. Reviewers perceived direct quotes as evidence to support a certain theme or as a means to add strength to the theme as the following example illustrates:

“Please provide at least one quote from each school leader and one quote from children to support this theme, if possible. It would seem that most, if not all, themes should reflect data from each participant group”. Article #88.

Hence, the absence of quotes prompted reviewers to request at least one quote to justify the existence of that theme. The inclusion of a rich set of quotes was perceived as strength of a manuscript. Finally, less frequently raised reviewer comments related to the discrimination of similar themes, the presentation of quotes in tables (rather than under the appropriate theme headings), the lack of defining a theme and reducing the number of themes.

Quantitative mindset

Some reviewers who were appointed by journal editors to review a manuscript containing qualitative research evaluated the quality of the manuscript from a perspective of a quantitative research paradigm. Some reviewers not only used terminology that is attuned to quantitative research, but also their judgements were based on a quantitative mindset. In particular, there were a number of reviewer comments published in BMC Health Services Research , BMC Medical Education and BMC Family Practice that demonstrated an apparent lack of understanding of the principles underlying qualitative inquiry of the person providing the review. First, several reviewers seemed to have confused the concept of generalisability with the concept of representativeness inherently associated with the positivist tradition. For instance, reviewers erroneously raised concerns about whether interviewees were “representative” of the “final target population” and requested the provision of detailed demographic characteristics.

“Need to better describe how the patients are representative of patients with chronic heart failure in the Netherlands generally. The declaration that “a representative group of patients were recruited” would benefit from stating what they were representative of.” Article # 66.

Similarly, another reviewer wanted to know from the authors how they ensured that the qualitative analysis was done objectively.

“The reader would benefit from a detailed description of […] how did the investigators ensure that they were objective in their analysis – objectivity and trustworthiness?” Article #22.

Furthermore, despite the fact that the paradigm wars have largely come to an end, hostility has not ceased on all fronts. In some reviewers the dominance and superiority of the quantitative paradigm over the qualitative paradigm is still present as the following comment illustrates:

“The main question and methods of this article is largely qualitative and does not seem to have significant implications for clinical practice, thus it may not be suitable to publish in this journal.” Article #45.

Finally, one reviewer apologised at the outset of the reviewer’s report for being unable to judge the data analysis due to the absence of sufficient knowledge in qualitative research.

Overall, in this FMRS we found that reviewers maintained a respectful and affirmative rhetoric when providing feedback. Yet, the positive feedback did not overshadow any key negative points that needed to be addressed in order to increase the quality of the manuscript. However, it should not be taken for granted that all reviewers are as courteous and generous as the ones included in our particular review, because as Taylor and Bradbury-Jones [ 36 ] observed there are many examples where reviewers can be unhelpful and destructive in their comments.

A key finding of this FMRS is that reviewers are more inclined to comment on the writing rather than the methodological rigour of a manuscript. This is a matter of concern, because Altman [ 37 ] – the originator of the EQUATOR (Enhancing the Quality and Transparency of Health Research) Network – has pointed out: “Unless methodology is described the conclusions must be suspect”. If we are to advance the quality of qualitative research then we need to encourage clarity and depth in reporting the rigour of research.

When reviewers did comment on the methodological aspects of an article, issues frequently commented on by reviewers were in relation to sampling, data analysis, robust/rich data analysis as reflected in the findings and themes/sub-themes that are insufficiently supported. Considerable work has been undertaken over the past decade trying to improve the reporting standards of qualitative research through the dissemination of qualitatively oriented reporting guidelines such as the ‘Standards for Reporting Qualitative Research’ (SRQR) [ 38 ] or the ‘Consolidated Criteria for Reporting Qualitative Research’ (COREQ) [ 39 ] with the aim of improving transparency of qualitative research. Although these guidelines appear to be comprehensive, some important issues identified in our study are not mentioned or only dealt with somewhat superficially: sampling for example. Neither COREQ nor SRQR shed light on the appropriateness of the sample composition, i.e., to critically question whether all relevant groups of people have been identified as potential participants or whether extreme or deviant cases were sought.

Similarly, lack of in-depth data analysis has been identified as another weakness where uninterpreted (raw) data were presented as if they were findings. However, existing reporting guidelines are not sharp enough to distinguish between findings and data. While findings are researchers’ interpretations of the data they collected, data consist of empirical, uninterpreted material researchers offer as their findings [ 32 ]. Hence, we suggest modifying the current reporting guidelines by including a further item to the checklist called “Degree of data transformation”. The suggested checklist item might prompt both authors and reviewers to make a judgment about the degree to which data have been transformed, i.e., interpretively removed from data as given. The rationale for the new item is to raise authors’ and reviewers’ awareness for the appropriateness of the degree of data transformation in relation to the chosen analysis method. For example, findings derived from content analysis remain close to the data as they were given to the research; they are often organised into surface classification systems and summarised in brief text. Findings derived from grounded theory, however, should offer a coherent model or line of argument which addresses causality or the fundamental nature of events or experiences [ 32 ].

Besides that, some reviewers put forward comments that we refer to as aligning with a ‘quantitative mindset’. Such reviewers did not appear to understand that rather than aspiring to statistical representativeness, in qualitative research participants are selected purposefully for the contribution they can make towards the phenomenon under study [ 40 ]. Hence, the generalisability of qualitative findings beyond an immediate group of participants is judged by similarities between the time, place, people or other social contexts [ 41 ] rather than in relation to the comparability of the demographic variables. It is the fit of the topic or the comparability of the problem that is of concern [ 40 ].

The majority of issues that reviewers picked up on are already mentioned in reporting guidelines, so there is no reason why these were omitted by researchers. Many journals now insist on alignment with COREQ criteria, so there is an important question to be asked as to why this is not always happening. We suggest that completion of an established reporting checklist (e.g. COREQ, SRQR) on submission becomes a requirement.

In this FMRS we have made judgements about fellow peer reviewers and found their feedback to be constructive, but also, among some, we found some lack of grasp of the essence of the qualitative endeavor. Some reviewers did not seem to understand that objectivity and representative sampling are the antithesis of subjectivity, reflexivity and data saturation. We acknowledge though, that individual reviewers might have varying levels of experience and competence both in terms of qualitative research, but also in the reviewing process. We found one reviewer who apologised at the outset of the reviewer’s report for being unable to judge the data analysis due to their absence of sufficient knowledge in qualitative research. In line with Spigt and Arts [ 42 ], we appreciate the honesty of that reviewer for being transparent about their skillset. The lessons here we feel are for more experienced reviewers to offer support and reviewing mentorship to those who are less experienced and for reviewers to emulate the honesty of the reviewer as discussed here, by being open about their capabilities within the review process.

Based on our findings, we have a number of recommendations for both researchers and reviewers. For researchers reporting qualitative studies, we suggest that particular attention is paid to reporting of sampling techniques, both in the characteristics and composition of the sample, and how participants were selected. This is an issue that the reviewers in our FMRS picked up on, so forewarned is forearmed. But it is also crucially important that sampling matters are not glossed over, so this constitutes good practice in research reporting as well. Second, it seems that qualitative researchers do not give sufficient detail about analytic techniques and underlying theoretical frameworks. The latter has been pointed out before [ 25 ], but both these aspects were often the subject of reviewer comments.

Our recommendation for reviewers is simply to be honest. If qualitative research is not an area of expertise, then it is better to decline to undertake the review, than to apply a quantitative lens in the assessment of a qualitative piece of work. It is inappropriate to ask for details about validity and generalisability and shows a lack of respect to qualitative researchers. We are well beyond the arguments about quantitative versus qualitative [ 43 ]. It is totally appropriate to comment on background and findings and any obvious deficiencies. Finally, our recommendation to editors is a difficult one, because as editors ourselves we know how challenging it can be to find willing reviewers. When selecting reviewers however, it is as important to bear in mind the methodological aspects of an article and its subject, and to select reviewers with appropriate methodological expertise. Some journals make it a requirement for quantitative articles to be reviewed by a statistical expert and we think this is good practice. When it comes to qualitative articles however, the methodological expertise of reviewers may not be so stringently noted and applied. Editors could make a difference here and help to push up the quality of qualitative reviews.

Strengths and weaknesses

Since we had only access to reviewer’s comments of articles that were finally published in open access journals, we are unable to compare them to types of comments related to rejected submissions. Thus, this study was limited to manuscripts that were sent out for external peer review and were finally published. Furthermore, the chosen study design of analysing only reviewer comments of published articles with an open system of peer review did not allow direct comparison with reviewer comments derived from blind-review.

FMRS provides a snap-shot of a particular issue at one particular time [ 23 ]. To that end, findings might be different in another review undertaken in a different time period. However, as a contemporary profile of reviewing within qualitative research, the current findings provide useful insights for authors of qualitative reports and reviewers alike. Further research should focus on comparing reviewer comments taken from an open and closed system of peer review in order to identify similarities and differences between the two models of peer review.

A limitation is that we reviewed open access journals because this was the only way of accessing a range of comments. The alternative that we did consider was to use the feedback provided by reviewers on our own manuscripts. However, this would have lacked the transparency and traceability associated with this current FMRS, which we consider to be a strength. That said, there may be an inherent problem in having reviewed open access peer review comments, where both the author and reviewer are known. Reviewers are unable to ‘hide behind’ the anonymity of blind peer review and this might reflect, at least in part, why their comments as analysed for this review were overwhelmingly courteous and constructive. This is at odds with the comments that one of us has received as part of a blind peer review: ‘silly, silly, silly’ [ 36 ].

This FMRS has highlighted some important issues in the field of qualitative reviewing that hold lessons for authors, reviewers and editors. Authors of qualitative reports are called upon to follow guidelines on reporting and any amendments that these might contain as recommended by the findings of our review. Humility and transparency are required among reviewers when it comes to accepting to undertake a review and an honest appraisal of their capabilities in understanding the qualitative endeavor. Journal editors can assist this by thoughtful and judicious selection of reviewers. Ultimately, all those involved with the publication process can drive up the quality of individual qualitative articles and the synergy is such that this can make a significant impact on quality across the field.

Availability of data and materials

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

Abbreviations

BioMed central

British medical journal

Consolidated criteria for reporting qualitative research

Enhancing the quality and transparency of health research

Focused mapping review and synthesis

Introduction, methods, results and discussion

Natural language toolKit

Standards for reporting qualitative research

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Acknowledgments

The support of Daniel Rütter in compiling data and providing technical support is gratefully acknowledged. Furthermore, we would like to thank Holger Hönings for applying general-purpose programming language to allow for a quantification of reviewer comments in the MS Excel spreadsheet.

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Oliver Rudolf HERBER

School of Nursing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK

Caroline BRADBURY-JONES & Julie TAYLOR

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Susanna BÖLING

Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King’s College London, London, UK

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All authors have made an intellectual contribution to this research paper. ORH conducted the qualitative analysis and wrote the first draft of the paper. SB, SC, JH, YK, RN and JDV extracted and classified each comment using the classification system. CB-J and JT independently undertook a calibration exercise of a random sub-sample of articles ( n  = 22) to ensure consistency across coders. All co-authors (CB-J, SB, SC, JH, YK, RN, JDV and JT) have input into drafts and have read and approved the final version of the manuscript.

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Additional file 1.

References of all manuscripts included in the analysis ( n  = 107).

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HERBER, O.R., BRADBURY-JONES, C., BÖLING, S. et al. What feedback do reviewers give when reviewing qualitative manuscripts? A focused mapping review and synthesis. BMC Med Res Methodol 20 , 122 (2020). https://doi.org/10.1186/s12874-020-01005-y

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• Published: 05 October 2018

Interviews and focus groups in qualitative research: an update for the digital age

• P. Gill 1 &
• J. Baillie 2  

British Dental Journal volume  225 ,  pages 668–672 ( 2018 ) Cite this article

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Highlights that qualitative research is used increasingly in dentistry. Interviews and focus groups remain the most common qualitative methods of data collection.

Suggests the advent of digital technologies has transformed how qualitative research can now be undertaken.

Suggests interviews and focus groups can offer significant, meaningful insight into participants' experiences, beliefs and perspectives, which can help to inform developments in dental practice.

Qualitative research is used increasingly in dentistry, due to its potential to provide meaningful, in-depth insights into participants' experiences, perspectives, beliefs and behaviours. These insights can subsequently help to inform developments in dental practice and further related research. The most common methods of data collection used in qualitative research are interviews and focus groups. While these are primarily conducted face-to-face, the ongoing evolution of digital technologies, such as video chat and online forums, has further transformed these methods of data collection. This paper therefore discusses interviews and focus groups in detail, outlines how they can be used in practice, how digital technologies can further inform the data collection process, and what these methods can offer dentistry.

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Principal component analysis

Interviews in the social sciences

Introduction.

Traditionally, research in dentistry has primarily been quantitative in nature. 1 However, in recent years, there has been a growing interest in qualitative research within the profession, due to its potential to further inform developments in practice, policy, education and training. Consequently, in 2008, the British Dental Journal (BDJ) published a four paper qualitative research series, 2 , 3 , 4 , 5 to help increase awareness and understanding of this particular methodological approach.

Since the papers were originally published, two scoping reviews have demonstrated the ongoing proliferation in the use of qualitative research within the field of oral healthcare. 1 , 6 To date, the original four paper series continue to be well cited and two of the main papers remain widely accessed among the BDJ readership. 2 , 3 The potential value of well-conducted qualitative research to evidence-based practice is now also widely recognised by service providers, policy makers, funding bodies and those who commission, support and use healthcare research.

Besides increasing standalone use, qualitative methods are now also routinely incorporated into larger mixed method study designs, such as clinical trials, as they can offer additional, meaningful insights into complex problems that simply could not be provided by quantitative methods alone. Qualitative methods can also be used to further facilitate in-depth understanding of important aspects of clinical trial processes, such as recruitment. For example, Ellis et al . investigated why edentulous older patients, dissatisfied with conventional dentures, decline implant treatment, despite its established efficacy, and frequently refuse to participate in related randomised clinical trials, even when financial constraints are removed. 7 Through the use of focus groups in Canada and the UK, the authors found that fears of pain and potential complications, along with perceived embarrassment, exacerbated by age, are common reasons why older patients typically refuse dental implants. 7

The last decade has also seen further developments in qualitative research, due to the ongoing evolution of digital technologies. These developments have transformed how researchers can access and share information, communicate and collaborate, recruit and engage participants, collect and analyse data and disseminate and translate research findings. 8 Where appropriate, such technologies are therefore capable of extending and enhancing how qualitative research is undertaken. 9 For example, it is now possible to collect qualitative data via instant messaging, email or online/video chat, using appropriate online platforms.

These innovative approaches to research are therefore cost-effective, convenient, reduce geographical constraints and are often useful for accessing 'hard to reach' participants (for example, those who are immobile or socially isolated). 8 , 9 However, digital technologies are still relatively new and constantly evolving and therefore present a variety of pragmatic and methodological challenges. Furthermore, given their very nature, their use in many qualitative studies and/or with certain participant groups may be inappropriate and should therefore always be carefully considered. While it is beyond the scope of this paper to provide a detailed explication regarding the use of digital technologies in qualitative research, insight is provided into how such technologies can be used to facilitate the data collection process in interviews and focus groups.

In light of such developments, it is perhaps therefore timely to update the main paper 3 of the original BDJ series. As with the previous publications, this paper has been purposely written in an accessible style, to enhance readability, particularly for those who are new to qualitative research. While the focus remains on the most common qualitative methods of data collection – interviews and focus groups – appropriate revisions have been made to provide a novel perspective, and should therefore be helpful to those who would like to know more about qualitative research. This paper specifically focuses on undertaking qualitative research with adult participants only.

Overview of qualitative research

Qualitative research is an approach that focuses on people and their experiences, behaviours and opinions. 10 , 11 The qualitative researcher seeks to answer questions of 'how' and 'why', providing detailed insight and understanding, 11 which quantitative methods cannot reach. 12 Within qualitative research, there are distinct methodologies influencing how the researcher approaches the research question, data collection and data analysis. 13 For example, phenomenological studies focus on the lived experience of individuals, explored through their description of the phenomenon. Ethnographic studies explore the culture of a group and typically involve the use of multiple methods to uncover the issues. 14

While methodology is the 'thinking tool', the methods are the 'doing tools'; 13 the ways in which data are collected and analysed. There are multiple qualitative data collection methods, including interviews, focus groups, observations, documentary analysis, participant diaries, photography and videography. Two of the most commonly used qualitative methods are interviews and focus groups, which are explored in this article. The data generated through these methods can be analysed in one of many ways, according to the methodological approach chosen. A common approach is thematic data analysis, involving the identification of themes and subthemes across the data set. Further information on approaches to qualitative data analysis has been discussed elsewhere. 1

Qualitative research is an evolving and adaptable approach, used by different disciplines for different purposes. Traditionally, qualitative data, specifically interviews, focus groups and observations, have been collected face-to-face with participants. In more recent years, digital technologies have contributed to the ongoing evolution of qualitative research. Digital technologies offer researchers different ways of recruiting participants and collecting data, and offer participants opportunities to be involved in research that is not necessarily face-to-face.

Research interviews are a fundamental qualitative research method 15 and are utilised across methodological approaches. Interviews enable the researcher to learn in depth about the perspectives, experiences, beliefs and motivations of the participant. 3 , 16 Examples include, exploring patients' perspectives of fear/anxiety triggers in dental treatment, 17 patients' experiences of oral health and diabetes, 18 and dental students' motivations for their choice of career. 19

Interviews may be structured, semi-structured or unstructured, 3 according to the purpose of the study, with less structured interviews facilitating a more in depth and flexible interviewing approach. 20 Structured interviews are similar to verbal questionnaires and are used if the researcher requires clarification on a topic; however they produce less in-depth data about a participant's experience. 3 Unstructured interviews may be used when little is known about a topic and involves the researcher asking an opening question; 3 the participant then leads the discussion. 20 Semi-structured interviews are commonly used in healthcare research, enabling the researcher to ask predetermined questions, 20 while ensuring the participant discusses issues they feel are important.

Interviews can be undertaken face-to-face or using digital methods when the researcher and participant are in different locations. Audio-recording the interview, with the consent of the participant, is essential for all interviews regardless of the medium as it enables accurate transcription; the process of turning the audio file into a word-for-word transcript. This transcript is the data, which the researcher then analyses according to the chosen approach.

Types of interview

Qualitative studies often utilise one-to-one, face-to-face interviews with research participants. This involves arranging a mutually convenient time and place to meet the participant, signing a consent form and audio-recording the interview. However, digital technologies have expanded the potential for interviews in research, enabling individuals to participate in qualitative research regardless of location.

Telephone interviews can be a useful alternative to face-to-face interviews and are commonly used in qualitative research. They enable participants from different geographical areas to participate and may be less onerous for participants than meeting a researcher in person. 15 A qualitative study explored patients' perspectives of dental implants and utilised telephone interviews due to the quality of the data that could be yielded. 21 The researcher needs to consider how they will audio record the interview, which can be facilitated by purchasing a recorder that connects directly to the telephone. One potential disadvantage of telephone interviews is the inability of the interviewer and researcher to see each other. This is resolved using software for audio and video calls online – such as Skype – to conduct interviews with participants in qualitative studies. Advantages of this approach include being able to see the participant if video calls are used, enabling observation of non-verbal communication, and the software can be free to use. However, participants are required to have a device and internet connection, as well as being computer literate, potentially limiting who can participate in the study. One qualitative study explored the role of dental hygienists in reducing oral health disparities in Canada. 22 The researcher conducted interviews using Skype, which enabled dental hygienists from across Canada to be interviewed within the research budget, accommodating the participants' schedules. 22

A less commonly used approach to qualitative interviews is the use of social virtual worlds. A qualitative study accessed a social virtual world – Second Life – to explore the health literacy skills of individuals who use social virtual worlds to access health information. 23 The researcher created an avatar and interview room, and undertook interviews with participants using voice and text methods. 23 This approach to recruitment and data collection enables individuals from diverse geographical locations to participate, while remaining anonymous if they wish. Furthermore, for interviews conducted using text methods, transcription of the interview is not required as the researcher can save the written conversation with the participant, with the participant's consent. However, the researcher and participant need to be familiar with how the social virtual world works to engage in an interview this way.

Conducting an interview

Ensuring informed consent before any interview is a fundamental aspect of the research process. Participants in research must be afforded autonomy and respect; consent should be informed and voluntary. 24 Individuals should have the opportunity to read an information sheet about the study, ask questions, understand how their data will be stored and used, and know that they are free to withdraw at any point without reprisal. The qualitative researcher should take written consent before undertaking the interview. In a face-to-face interview, this is straightforward: the researcher and participant both sign copies of the consent form, keeping one each. However, this approach is less straightforward when the researcher and participant do not meet in person. A recent protocol paper outlined an approach for taking consent for telephone interviews, which involved: audio recording the participant agreeing to each point on the consent form; the researcher signing the consent form and keeping a copy; and posting a copy to the participant. 25 This process could be replicated in other interview studies using digital methods.

There are advantages and disadvantages of using face-to-face and digital methods for research interviews. Ultimately, for both approaches, the quality of the interview is determined by the researcher. 16 Appropriate training and preparation are thus required. Healthcare professionals can use their interpersonal communication skills when undertaking a research interview, particularly questioning, listening and conversing. 3 However, the purpose of an interview is to gain information about the study topic, 26 rather than offering help and advice. 3 The researcher therefore needs to listen attentively to participants, enabling them to describe their experience without interruption. 3 The use of active listening skills also help to facilitate the interview. 14 Spradley outlined elements and strategies for research interviews, 27 which are a useful guide for qualitative researchers:

Greeting and explaining the project/interview

Asking descriptive (broad), structural (explore response to descriptive) and contrast (difference between) questions

Asymmetry between the researcher and participant talking

Expressing interest and cultural ignorance

Repeating, restating and incorporating the participant's words when asking questions

Creating hypothetical situations

Asking friendly questions

Knowing when to leave.

For semi-structured interviews, a topic guide (also called an interview schedule) is used to guide the content of the interview – an example of a topic guide is outlined in Box 1 . The topic guide, usually based on the research questions, existing literature and, for healthcare professionals, their clinical experience, is developed by the research team. The topic guide should include open ended questions that elicit in-depth information, and offer participants the opportunity to talk about issues important to them. This is vital in qualitative research where the researcher is interested in exploring the experiences and perspectives of participants. It can be useful for qualitative researchers to pilot the topic guide with the first participants, 10 to ensure the questions are relevant and understandable, and amending the questions if required.

Regardless of the medium of interview, the researcher must consider the setting of the interview. For face-to-face interviews, this could be in the participant's home, in an office or another mutually convenient location. A quiet location is preferable to promote confidentiality, enable the researcher and participant to concentrate on the conversation, and to facilitate accurate audio-recording of the interview. For interviews using digital methods the same principles apply: a quiet, private space where the researcher and participant feel comfortable and confident to participate in an interview.

Box 1: Example of a topic guide

Study focus: Parents' experiences of brushing their child's (aged 0–5) teeth

1. Can you tell me about your experience of cleaning your child's teeth?

How old was your child when you started cleaning their teeth?

Why did you start cleaning their teeth at that point?

How often do you brush their teeth?

What do you use to brush their teeth and why?

2. Could you explain how you find cleaning your child's teeth?

Do you find anything difficult?

What makes cleaning their teeth easier for you?

3. How has your experience of cleaning your child's teeth changed over time?

Has it become easier or harder?

Have you changed how often and how you clean their teeth? If so, why?

4. Could you describe how your child finds having their teeth cleaned?

What do they enjoy about having their teeth cleaned?

Is there anything they find upsetting about having their teeth cleaned?

5. Where do you look for information/advice about cleaning your child's teeth?

What did your health visitor tell you about cleaning your child's teeth? (If anything)

What has the dentist told you about caring for your child's teeth? (If visited)

Have any family members given you advice about how to clean your child's teeth? If so, what did they tell you? Did you follow their advice?

6. Is there anything else you would like to discuss about this?

Focus groups

A focus group is a moderated group discussion on a pre-defined topic, for research purposes. 28 , 29 While not aligned to a particular qualitative methodology (for example, grounded theory or phenomenology) as such, focus groups are used increasingly in healthcare research, as they are useful for exploring collective perspectives, attitudes, behaviours and experiences. Consequently, they can yield rich, in-depth data and illuminate agreement and inconsistencies 28 within and, where appropriate, between groups. Examples include public perceptions of dental implants and subsequent impact on help-seeking and decision making, 30 and general dental practitioners' views on patient safety in dentistry. 31

Focus groups can be used alone or in conjunction with other methods, such as interviews or observations, and can therefore help to confirm, extend or enrich understanding and provide alternative insights. 28 The social interaction between participants often results in lively discussion and can therefore facilitate the collection of rich, meaningful data. However, they are complex to organise and manage, due to the number of participants, and may also be inappropriate for exploring particularly sensitive issues that many participants may feel uncomfortable about discussing in a group environment.

Focus groups are primarily undertaken face-to-face but can now also be undertaken online, using appropriate technologies such as email, bulletin boards, online research communities, chat rooms, discussion forums, social media and video conferencing. 32 Using such technologies, data collection can also be synchronous (for example, online discussions in 'real time') or, unlike traditional face-to-face focus groups, asynchronous (for example, online/email discussions in 'non-real time'). While many of the fundamental principles of focus group research are the same, regardless of how they are conducted, a number of subtle nuances are associated with the online medium. 32 Some of which are discussed further in the following sections.

Focus group considerations

Some key considerations associated with face-to-face focus groups are: how many participants are required; should participants within each group know each other (or not) and how many focus groups are needed within a single study? These issues are much debated and there is no definitive answer. However, the number of focus groups required will largely depend on the topic area, the depth and breadth of data needed, the desired level of participation required 29 and the necessity (or not) for data saturation.

The optimum group size is around six to eight participants (excluding researchers) but can work effectively with between three and 14 participants. 3 If the group is too small, it may limit discussion, but if it is too large, it may become disorganised and difficult to manage. It is, however, prudent to over-recruit for a focus group by approximately two to three participants, to allow for potential non-attenders. For many researchers, particularly novice researchers, group size may also be informed by pragmatic considerations, such as the type of study, resources available and moderator experience. 28 Similar size and mix considerations exist for online focus groups. Typically, synchronous online focus groups will have around three to eight participants but, as the discussion does not happen simultaneously, asynchronous groups may have as many as 10–30 participants. 33

The topic area and potential group interaction should guide group composition considerations. Pre-existing groups, where participants know each other (for example, work colleagues) may be easier to recruit, have shared experiences and may enjoy a familiarity, which facilitates discussion and/or the ability to challenge each other courteously. 3 However, if there is a potential power imbalance within the group or if existing group norms and hierarchies may adversely affect the ability of participants to speak freely, then 'stranger groups' (that is, where participants do not already know each other) may be more appropriate. 34 , 35

Focus group management

Face-to-face focus groups should normally be conducted by two researchers; a moderator and an observer. 28 The moderator facilitates group discussion, while the observer typically monitors group dynamics, behaviours, non-verbal cues, seating arrangements and speaking order, which is essential for transcription and analysis. The same principles of informed consent, as discussed in the interview section, also apply to focus groups, regardless of medium. However, the consent process for online discussions will probably be managed somewhat differently. For example, while an appropriate participant information leaflet (and consent form) would still be required, the process is likely to be managed electronically (for example, via email) and would need to specifically address issues relating to technology (for example, anonymity and use, storage and access to online data). 32

The venue in which a face to face focus group is conducted should be of a suitable size, private, quiet, free from distractions and in a collectively convenient location. It should also be conducted at a time appropriate for participants, 28 as this is likely to promote attendance. As with interviews, the same ethical considerations apply (as discussed earlier). However, online focus groups may present additional ethical challenges associated with issues such as informed consent, appropriate access and secure data storage. Further guidance can be found elsewhere. 8 , 32

Before the focus group commences, the researchers should establish rapport with participants, as this will help to put them at ease and result in a more meaningful discussion. Consequently, researchers should introduce themselves, provide further clarity about the study and how the process will work in practice and outline the 'ground rules'. Ground rules are designed to assist, not hinder, group discussion and typically include: 3 , 28 , 29

Discussions within the group are confidential to the group

Only one person can speak at a time

All participants should have sufficient opportunity to contribute

There should be no unnecessary interruptions while someone is speaking

Everyone can be expected to be listened to and their views respected

Challenging contrary opinions is appropriate, but ridiculing is not.

Moderating a focus group requires considered management and good interpersonal skills to help guide the discussion and, where appropriate, keep it sufficiently focused. Avoid, therefore, participating, leading, expressing personal opinions or correcting participants' knowledge 3 , 28 as this may bias the process. A relaxed, interested demeanour will also help participants to feel comfortable and promote candid discourse. Moderators should also prevent the discussion being dominated by any one person, ensure differences of opinions are discussed fairly and, if required, encourage reticent participants to contribute. 3 Asking open questions, reflecting on significant issues, inviting further debate, probing responses accordingly, and seeking further clarification, as and where appropriate, will help to obtain sufficient depth and insight into the topic area.

Moderating online focus groups requires comparable skills, particularly if the discussion is synchronous, as the discussion may be dominated by those who can type proficiently. 36 It is therefore important that sufficient time and respect is accorded to those who may not be able to type as quickly. Asynchronous discussions are usually less problematic in this respect, as interactions are less instant. However, moderating an asynchronous discussion presents additional challenges, particularly if participants are geographically dispersed, as they may be online at different times. Consequently, the moderator will not always be present and the discussion may therefore need to occur over several days, which can be difficult to manage and facilitate and invariably requires considerable flexibility. 32 It is also worth recognising that establishing rapport with participants via online medium is often more challenging than via face-to-face and may therefore require additional time, skills, effort and consideration.

As with research interviews, focus groups should be guided by an appropriate interview schedule, as discussed earlier in the paper. For example, the schedule will usually be informed by the review of the literature and study aims, and will merely provide a topic guide to help inform subsequent discussions. To provide a verbatim account of the discussion, focus groups must be recorded, using an audio-recorder with a good quality multi-directional microphone. While videotaping is possible, some participants may find it obtrusive, 3 which may adversely affect group dynamics. The use (or not) of a video recorder, should therefore be carefully considered.

At the end of the focus group, a few minutes should be spent rounding up and reflecting on the discussion. 28 Depending on the topic area, it is possible that some participants may have revealed deeply personal issues and may therefore require further help and support, such as a constructive debrief or possibly even referral on to a relevant third party. It is also possible that some participants may feel that the discussion did not adequately reflect their views and, consequently, may no longer wish to be associated with the study. 28 Such occurrences are likely to be uncommon, but should they arise, it is important to further discuss any concerns and, if appropriate, offer them the opportunity to withdraw (including any data relating to them) from the study. Immediately after the discussion, researchers should compile notes regarding thoughts and ideas about the focus group, which can assist with data analysis and, if appropriate, any further data collection.

Qualitative research is increasingly being utilised within dental research to explore the experiences, perspectives, motivations and beliefs of participants. The contributions of qualitative research to evidence-based practice are increasingly being recognised, both as standalone research and as part of larger mixed-method studies, including clinical trials. Interviews and focus groups remain commonly used data collection methods in qualitative research, and with the advent of digital technologies, their utilisation continues to evolve. However, digital methods of qualitative data collection present additional methodological, ethical and practical considerations, but also potentially offer considerable flexibility to participants and researchers. Consequently, regardless of format, qualitative methods have significant potential to inform important areas of dental practice, policy and further related research.

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Gill, P., Baillie, J. Interviews and focus groups in qualitative research: an update for the digital age. Br Dent J 225 , 668–672 (2018). https://doi.org/10.1038/sj.bdj.2018.815

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Issue Date : 12 October 2018

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A Guide to Writing a Qualitative Systematic Review Protocol to Enhance Evidence-Based Practice in Nursing and Health Care

Affiliations.

• 1 PhD candidate, School of Nursing and Midwifey, Monash University, and Clinical Nurse Specialist, Adult and Pediatric Intensive Care Unit, Monash Health, Melbourne, Victoria, Australia.
• 2 Lecturer, School of Nursing and Midwifery, Monash University, Melbourne, Victoria, Australia.
• 3 Senior Lecturer, School of Nursing and Midwifery, Monash University, Melbourne, Victoria, Australia.
• PMID: 26790142
• DOI: 10.1111/wvn.12134

Background: The qualitative systematic review is a rapidly developing area of nursing research. In order to present trustworthy, high-quality recommendations, such reviews should be based on a review protocol to minimize bias and enhance transparency and reproducibility. Although there are a number of resources available to guide researchers in developing a quantitative review protocol, very few resources exist for qualitative reviews.

Aims: To guide researchers through the process of developing a qualitative systematic review protocol, using an example review question.

Methodology: The key elements required in a systematic review protocol are discussed, with a focus on application to qualitative reviews: Development of a research question; formulation of key search terms and strategies; designing a multistage review process; critical appraisal of qualitative literature; development of data extraction techniques; and data synthesis. The paper highlights important considerations during the protocol development process, and uses a previously developed review question as a working example.

Implications for research: This paper will assist novice researchers in developing a qualitative systematic review protocol. By providing a worked example of a protocol, the paper encourages the development of review protocols, enhancing the trustworthiness and value of the completed qualitative systematic review findings.

Linking evidence to action: Qualitative systematic reviews should be based on well planned, peer reviewed protocols to enhance the trustworthiness of results and thus their usefulness in clinical practice. Protocols should outline, in detail, the processes which will be used to undertake the review, including key search terms, inclusion and exclusion criteria, and the methods used for critical appraisal, data extraction and data analysis to facilitate transparency of the review process. Additionally, journals should encourage and support the publication of review protocols, and should require reference to a protocol prior to publication of the review results.

Keywords: guidelines; meta synthesis; qualitative; systematic review protocol.

© 2016 Sigma Theta Tau International.

• Evidence-Based Practice / standards*
• Information Seeking Behavior
• Nursing / methods
• Qualitative Research*
• Research Design / standards*
• Systematic Reviews as Topic*
• Writing / standards*

About Journal

American Journal of Qualitative Research (AJQR)  is a quarterly peer-reviewed academic journal that publishes qualitative research articles from a number of social science disciplines such as psychology, health science, sociology, criminology, education, political science, and administrative studies. The journal is an international and interdisciplinary focus and greatly welcomes papers from all countries. The journal offers an intellectual platform for researchers, practitioners, administrators, and policymakers to contribute and promote qualitative research and analysis.

ISSN: 2576-2141

Call for Papers- American Journal of Qualitative Research

American Journal of Qualitative Research (AJQR) welcomes original research articles and book reviews for its next issue. The AJQR is a quarterly and peer-reviewed journal published in February, May, August, and November.

We are seeking submissions for a forthcoming issue published in February 2024. The paper should be written in professional English. The length of 6000-10000 words is preferred. All manuscripts should be prepared in MS Word format and submitted online: https://www.editorialpark.com/ajqr

For any further information about the journal, please visit its website: https://www.ajqr.org

Submission Deadline: November 15, 2023

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Dear AJQR Readers, 

Due to the high volume of submissions in the American Journal of Qualitative Research , the editorial board decided to publish quarterly since 2023.

Volume 8, Issue 2

Current issue.

The COVID-19 pandemic has highlighted and exacerbated the difficult juggling act women in the U.S. have to do between parenting their children and working outside the home. The pandemic has also led to a decline in maternal mental health, particularly among mothers with young children, mothers of color, and those with previous mental health issues. The authors noted these experiences in their own lives as mothers with children and observed them in the lives of the women around them. These observations informed the design of this narrative inquiry study, in which we used semi-structured interviews to explore mothers’ shifting ideas and experiences of mothering, work, and family life during a global pandemic. We used creative analytic practice (CAP) to compose reflexive researcher conversations around the interview data that enabled us to highlight nuances in the data, show more transparently our meaning-making, make visible our researcher subjectivities, show uncertainties about aspects of data interpretation, and create a more accessible data representation.

Keywords: Mothering, COVID-19 pandemic, U.S. women, Narrative inquiry, Creative analytic practice.

The COVID-19 pandemic put France’s healthcare system under extreme tension and led to significant levels of stress among healthcare professionals in general and nurses in particular. Research has shown how these elements affected nurses’ physical and psychological health and manifested as insomnia, anxiety, and depressive syndromes. The present qualitative study aimed to explore the lived experiences of France’s nurses as a function of their level of exposure to the virus and whether they worked in the hospital sector or practiced privately in the community during the pandemic’s first wave. It also sought to describe the resources nurses used to maintain their overall health. We administered 19 qualitative interviews to 19 nurses in the autumn of 2021. The present study revealed that nurses were subjected to significant stress during the pandemic. Our data analysis enabled us to draw out three principal themes: 1) Being on the edge in stormy period ; 2) Personal impact on several levels and 3) Floating together and learning. There were no significant differences between the groups that were subjected to different levels of exposure to COVID-19. All the groups were affected by the pandemic that struck a healthcare system that was already systematically fragile. Nurses were severely tested by the COVID-19 pandemic, but their consciousness of the importance of their role grew, despite questioning what meaning there was to their profession, perhaps even to their lives . The trauma still felt fresh 18 months later, during the interviews, and this cannot be ignored in future healthcare policymaking .

Keywords: COVID-19, nurses, salutogenesis, stressors, health resources.

Annual mammography screening is recommended by the US Preventive Services Task Force (USPSTF) and American Cancer Society (ACS) to reduce mortality through early detection of breast cancer. In rural Appalachia, rates of later-stage breast cancer incidence and mortality are higher than national averages. We explored the ways that providers and staff at breast cancer screening facilities employed novel approaches to overcome patient- and facility-level barriers to access to breast cancer screening in the Appalachian region. We conducted 23 semi-structured interviews with 28 clinical providers and staff of breast health facilities in Appalachia. Themes reflect how limiting features of breast screening facilities influenced access to care; the way patient-level barriers presented challenges to access to breast screening; and that external and regulatory forces presented obstacles to access to care. In addition, the unique geographical and geographical attributes of the Appalachian region shaped access and adherence to mammography screening recommendations. Thematic findings highlight that facilities implemented patient-centered strategies to overcome access-related barriers. Results may inform the ways breast cancer screening facilities address suboptimal access to breast health screening. They may also inform future resource allocations to enable facilities to reach breast cancer screening performance goals.

Keywords: rural health, breast cancer, preventive health care, women’s health.

Paternal parenting affects child development; hence, the father’s absence has a deleterious effect on the male child. The literature on parenting shows limited focus on how parenting impacts children by gender. This qualitative hermeneutic phenomenological study investigated the key question, “How does a father’s absence during childhood influence a man’s subsequent parenting of his son(s)?” An integrated theoretical framework was used to guide the study: Parenting Style Theory, Social-Cognitive Theory, and Bioecological Systems Theory. Nine Trinidadian males aged 20 to 35 years who were parenting sons were recruited to participate using snowball sampling. Data on men’s adverse childhood experiences were gathered using semi-structured interviews. Content and thematic analyses were done using DELVE software. Key findings include the influence of stereotypical cultural constructs, the church’s critical role in addressing childhood trauma, the transmission of father absence across generations, and the relationship between neurodevelopment and adverse childhood experiences. Implications of these findings will benefit child and adolescent advocacy, inform policymaking, aid professional intervention in mental health and education, and strengthen familial systems and ecclesiastical contexts. Future research should explore the lived experiences of men who crave emotional connection with their sons yet struggle with the stereotypical cultural perception of manhood.

Keywords: father absence, brain development, childhood trauma, intergenerational, the transmission of behavior.

The purpose of this qualitative transcendental phenomenological study was to understand the essence of the shared lived experiences of undergraduate college students with anxiety disorders at two universities in the Southeastern United States. Ellis’s cognitive theory, rational emotive behavior therapy, guided the study which took place at a mid-sized, public nonsectarian university and a small, private liberal arts college. The central research question elicited rich data regarding the shared lived experiences of the study participants. The four research sub-questions address participants’ perceptions regarding the impact of their disorders on their lifestyles and academic performance. A purposeful criterion sample was used to select the participants who completed a questionnaire, open-ended individual interviews, a single focus group interview, and participant journals. Phenomenological reduction was used to create a composite integration of meaning and the essence of the lived experience of the participants. Data results identified five themes: (a) social fears, (b) stressor issues, (c) generational issues, (d) academic performance barriers, and (e) institutional education and accommodation preferences.

Keywords: Alexithymia, anxiety, disorder, qualitative, stressors

School shootings are traumatic events that can lead to anxiety, depression, and post-traumatic stress disorder among students who experience these events. It is important to find effective strategies to help students cope with their return to school, as well as their anxiety and stress levels while on campus. There exists a gap in the literature on the effects of therapy dogs on students who have witnessed a school shooting. This current study used a retrospective mixed-methods survey that was sent to recent graduates of Marjory Stoneman Douglas High School (located in Parkland, Florida) who witnessed the February 2018 shooting. Data were collected to assess how the therapy dogs affected students' willingness to return to school and their stress/anxiety levels while on campus. Identified themes indicated that the therapy dogs helped with anxiety levels, stress levels, and overall moods of Marjory Stoneman Douglas High School students. These findings provide important implications for community leaders and school administrators who want to promote healing and well-being in a community that has experienced violence.

Keywords: Therapy dog, school shooting, community violence.

Identifying the relation between the processes of programming and foreign language writing may lead to new directions for programming language and natural language focused instructional design. The present qualitative case study supported by quantitative data investigated foreign language writing experiences of computer engineering students taking an object-oriented programming course. Forty-five sophomores learning programming and academic English simultaneously in a foundation university in Ankara, Turkey, were selected purposefully for the case study. There were two data sources (students’ opinions and documents) and three data collection tools (a semi-structured interview, a short diary, and a composition. In terms of the findings of the research, four themes were obtained; however, only the use of metacognitive strategies will be explained in detail due to the length of the study. Participants stated that they feel the positive effects of programming experience on the use of self-evaluation strategy and that there are similarities and differences between the processes of programming and foreign language writing. Participants’ views on the effect of programming on foreign language writing did not differ according to their writing and programming performance scores. Participants stated that programming experience may have an effect on the use of metacognitive language learning strategies in the writing process. Upon analyzing participants’ comments, it is understood that programming experience does not hinder the use of metacognitive strategies but has a role in supporting and reinforcing their use. It is suggested that multiple case studies be done for similar views on the effects of programming and that each finding be proven by quantitative studies.

Keywords: programming, foreign language writing, metacognitive strategies.

The significance of participatory decision-making in educational institutions is widely acknowledged as essential in school management and administration. This study aimed to determine how involved teachers are in making decisions in their schools and what role they think they play in shaping different parts of school policies and procedures. It also looked at their perspectives on how decisions made by others are carried out in schools. Semi-structured interviews with 10 secondary school teachers focused on teachers' role in decision-making related to their routine school tasks, strategic decision-making, participatory role in making school decisions, and their willingness to participate in decision-making. This study showed that teachers' low participation is attributed to their shared desire to be involved in school management and administration-related decisions. Teachers expressed that participatory school-based decision-making can promote collaboration and collectivism among the school staff, and it plays a significant role in shaping their work satisfaction and motivation. By gaining insights into teachers' perspectives, this study aims to contribute to the broader understanding of participatory school decision-making in the Rwandan secondary education system and communicate potential improvements for fostering a more collaborative and inclusive educational environment.

Keywords: teachers’ perceptions, qualitative research, decision-making, secondary schools.

One of the major inefficiencies in qualitative research is the accuracy and timeliness of transcribing audio files into analyzable text. However, researchers may now have the ability to leverage artificial intelligence to increase research efficiency through Chat GPT. As a result, this study performs feasibility and accuracy testing of Chat GPT versus human transcription to compare accuracy and timeliness. Results suggest that by using specific commands, Chat GPT can clean interview transcriptions in seconds with a <1% word error rate and near 0% syntactic error rate. Implications for research and ethics are addressed.

Keywords: Chat GPT, artificial intelligence, qualitative research, educational research, transcription

Alcohol misuse on college campuses has been shown to be the cause of physical, socio-emotional, and academic harms. Alcohol is also an issue at Gallaudet University but there is a gap in the literature describing this phenomenon. Using the social ecological model, this qualitative case study explored student perceptions and experiences with alcohol use through interviews with 24 deaf and hard of hearing college students at Gallaudet University. The main themes included: something to do, isolation, coping, communication, “playing catch up with life,” belonging, peer pressure, and university dynamics. The results of this study supported the research on alcohol use in the college environment, showing these themes to also be true at Gallaudet University. As a result, researchers recommend for Gallaudet University and other institutions use the education and interventions shown to be effective in the College Alcohol Intervention Matrix with deaf and hard of hearing students. Researchers also identified themes that were divergent from general college students and specific to the experience of being deaf and hard of hearing. This study highlighted the interpersonal level impact and importance of communication with alcohol and related harms. Researchers recommend further research on the spectrum of communication isolation on alcohol use, related harms, and the social-ecological impact of these experiences. In addition, researchers recommend programming and services to specifically address the issues that occur as a result of isolation, coping challenges, desire to belong, susceptibility to peer pressure, and wanting to catch up on life. It is hoped that the insights gained from this study will be used to inform interventions for deaf and hard of hearing college students, to reduce alcohol misuse, and thus to impact positive change.

Keywords: Deaf, hard of hearing, alcohol, college, university, isolation.

This qualitative study explores the perceived challenges for older adults during the first wave of the COVID-19 pandemic and how they worked on overcoming this adversity. Our sample (n=50), derived from a larger study, includes individuals 60 or older in Puerto Rico and the United States. Data were collected through an online questionnaire between May and August 2020 and analyzed using reflexive thematic analysis. Themes describe resilience through reflection and adaptation, critique of systemic problems and injustices, and reaffirmation of values and what is important. Considering the detrimental effect of the pandemic context on the older population, understanding their experiences and sources of strength can improve how they are supported in future crises.

Keywords: older adults, pandemic, COVID-19, reflexive thematic analysis, qualitative, Puerto Rico.

Beyond the pages of academic medicine

10 Tips for Reviewing a Qualitative Paper

Editor’s Note: The following post is part of a series of Peer Reviewer Resources written by some of  Academic Medicine ‘s top peer reviewers. Read other peer review posts .

By: Carol-anne Moulton, MD, FRACS, MEd, PhD, Department of Surgery, University of Toronto, and Priyanka Patel, MSc, Wilson Center, University Health Network, University of Toronto

This is a tough task. Let us say that off the bat. We have been involved in qualitative research for a long time now and the complexity of it never ceases to amaze us…so there is no “how to” guide that will suit all qualitative research.

Having said that, we think there are some guiding principles that can help us begin to understand the rigor of qualitative research and consequently the review process.

• Question/Purpose : This should be clearly stated, as in all research studies. There are generally no hypotheses statements in qualitative research as we are not testing but rather exploring. Ideally, the questions are framed around how and why type questions, rather than how often, is there a difference, or what are the factors type questions.
• Rationale of study : We like to make sure that the study was built upon a well justified and referenced rationale. It may not be our area of study but we think it is important for the authors to provide rationale for their study by building up the arguments from the literature. Theories or pre-existing frameworks that informed the research question should be described up front. Some work claims to be atheoretical. Traditionally, grounded theorists claimed their work to be atheoretical, but nowadays many grounded theorists are acknowledging being informed by particular perspectives, frameworks, or theories. This should be made explicit.
• Methodology described : What type of research was this? Ethnography? Grounded theory? Phenomenology? Discourse analysis? It’s important that the researchers describe their research journey in a clear and detailed enough way to give the readers an understanding for how the analyses evolved. This should include an explanation of why the methodological approach was used, as well as the key principles from the methodology that guided the study.
• Epistemology : Researchers come from all paradigms and it is important to identify within which paradigm the authors are situated. Sometimes they might state deliberately “We have used constructivist grounded theory,” but it might be a matter of reading between the lines to figure it out. If from the positivist paradigm, authors might use the terms valid or verified to imply they are making statements of truth. The paradigm helps us understand what the authors mean by “truth” and informs how they went about creating knowledge and constructing meaning from their results.
• Context described satisfactorily : Qualitative research is not meant to imply generalizability. In fact, we celebrate the importance of context. We recognize that the phenomena we study are often different in meaningful ways when taken to a different context. For example, the experiences of physicians coping with burnout may be unique based on specialty and/or institution (i.e. type of systems-level support available, differing demands in academic or community institutions). A good qualitative study should therefore describe sufficient details of context (i.e. physical, cultural, social, and/or environmental context) in which the research was conducted to allow the reader to make judgments of whether the results might be transferable to another (possibly their own) setting.
• Data collection and analysis : Do they provide enough information to understand the collection and analysis process? As reviewers, we often ask ourselves whether the data collection and analyses are clear and detailed enough for us to gain a sense of how the analysis of the phenomena evolved. For example, who made up the research team? Because most knowledge is viewed as a co-construction between researcher and participants, each individual (e.g. a sociologist versus a surgeon) will analyze the results differently, but both meaningfully, based on their unique position and perspective.
• Sampling strategies : These are very important to understand whether the question was aligned with the data collection process. The sample reflects the type of results achieved and helps the reader understand from which perspective the data was collected. Some common sampling strategies include theoretical sampling and negative case sampling. Researchers may theoretically sample by selecting participants that in someway inform their understanding of an emergent theme or idea. Negative case sampling may be used to search for instances that may challenge the emergent patterns from the data for the purpose of refining the analysis. Negative case sampling is used to ensure that the researchers are not specifically selecting cases that confirm their findings.
• Analysis elevated beyond description : Results might be descriptive in nature (e.g. “One surgeon felt upset and isolated after he experienced a hernia complication in his first month of independent practice”) or they might be elevated to create more abstract concepts and ideas removed from the primary dataset (e.g. characterizing the phases of surgeons’ reactions to complications). In either case, the researcher should ensure that the way they present their findings are aligned with principles of the methodology used.
• Proof of an iterative process : Qualitative research is usually done in an iterative manner where ideas and concepts are built up over time and occur through cycles of data collection and data analysis. This is demonstrated through statements like “Our interview template was altered over time to reflect the emergent ideas through the analysis process,” or “As we became interested in this concept, we began to sample for…”.
• Reflexivity : This is tough to understand, especially for those of us who come from the positivist paradigm where it is of utmost importance to “prove” that the results are “true” and untainted by bias. The aim of qualitative research is to understand meaning rather than assuming that there is a singular truth or reality. A good qualitative researcher recognizes that the way they make sense of and attach meaning to the data is partly shaped by the characteristics of the researcher (i.e. age, gender, social class, ethnicity, professional status, etc.) and the assumptions they hold. The researcher should make explicit the perspectives they are coming from so that the readers can interpret the data appropriately. Consider a study exploring the pressures surgical trainees experience in residency conducted by a staff surgeon versus a non-surgical anthropologist. You can imagine the findings may differ based on the types of questions the two interviewers decide to ask, what they each find interesting or important, or how comfortable the resident feels discussing sensitive information with an outsider (anthropologist) as opposed to an insider (surgeon). We like to see that a researcher has reflected on how her or his unique position, preconceptions, and biases influenced the findings.

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• Open access
• Published: 23 May 2024

30 years of youth system of care lessons learned – a qualitative study of Hawaiʻi’s partnership with the Substance Abuse and Mental Health Services Administration

• Kelsie H. Okamura 1 , 2 ,
• David Jackson 2 , 4 ,
• Danielle L. Carreira Ching 1 ,
• Da Eun Suh 2 ,
• Tia L. R. Hartsock 3 ,
• Puanani J. Hee 4 &
• Scott K. Shimabukuro 4  

BMC Health Services Research volume  24 , Article number:  658 ( 2024 ) Cite this article

Metrics details

The Hawaiʻi State Department of Health, Child and Adolescent Mental Health Division (CAMHD) has maintained a longstanding partnership with Substance Abuse and Mental Health Services Administration (SAMHSA) to enhance capacity and quality of community-based mental health services. The current study explored CAMHD’s history of SAMHSA system of care (SOC) awards and identified common themes, lessons learned, and recommendations for future funding.

Employing a two-phase qualitative approach, the study first conducted content analysis on seven final project reports, identifying themes and lessons learned based on SOC values and principles. Subsequently, interviews were conducted with 11 system leaders in grant projects and SOC award projects within the state. All data from project reports and interview transcripts were independently coded and analyzed using rapid qualitative analysis techniques.

Content validation and interview coding unveiled two content themes, interagency collaboration and youth and family voice, as areas that required long-term and consistent efforts across multiple projects. In addition, two general process themes, connection and continuity, emerged as essential approaches to system improvement work. The first emphasizes the importance of fostering connections in family, community, and culture, as well as within workforce members and child-serving agencies. The second highlights the importance of nurturing continuity throughout the system, from interagency collaboration to individual treatment.

Conclusions

The study provides deeper understanding of system of care evaluations, offering guidance to enhance and innovate youth mental health systems. The findings suggest that aligning state policies with federal guidelines and implementing longer funding mechanisms may alleviate administrative burdens.

Peer Review reports

Youth are disproportionately impacted by mental health disorders with average rates higher than adults in the United States [ 1 ]. This begins early on with one in six children aged two to eight years diagnosed with a mental, behavioral, or developmental disorder and persists over time with one in five youth having experiences with a severe mental health disorder at some point in their life [ 1 , 2 , 3 ]. At the end of 2021, the U.S. Surgeon General declared a youth mental health crisis noting that rates of emergency room visits for suspected suicide attempts had increased in some demographics by more than 50% compared to the same time period in 2019 [ 4 ]. Despite the large and increasing need for services, alarming gaps have been found in access to care and it is estimated that half of youth will not receive adequate treatment, which is detrimental to healthy growth and development into adulthood [ 5 ]. Large barriers to youth mental health care occur at the organizational and community levels where differing priorities across child-serving agencies may contribute to lower rates of youth access to services [ 6 ].

The system of care (SOC) approach was developed in the 1980s as a strategy to address siloed child-serving agencies through an integrated and principle-driven approach to tiered services for youth with social, emotional, and behavioral difficulties [ 7 ]. The SOC core values, informed by the Child and Adolescent Service System Program principles [ 8 ], are that services should be: (a) family and youth driven, (b) community-based, and (c) culturally and linguistically competent. These values are operationalized through guiding principles such as interagency collaboration, care coordination, and partnerships with families and youth [ 7 ]. The SOC approach applies principles to help guide coordinated efforts to support youth whose services intersect multiple child-service agencies (e.g., mental health, judiciary, education, child welfare). Several cross-site studies have evaluated youth SOC efforts over time with differential operational definitions of SOC values and principles [ 7 , 8 , 9 , 10 , 11 ]. Each study indicated the importance of sustainability planning at the outset and aligning infrastructure and service development to meet local system requirements. For example, Brashears and colleagues noted that having interagency involvement in developing and implementing shared administrative processes was a common challenge [ 9 ]. Moreover, fiscal crises, leadership turnover, and methodological concerns for assessing long-term sustainment were noted as barriers in the SOC approach. Indeed, the SOC approach requires commitment and financial resources to succeed.

In 1992, the United States federal government signed into public law the establishment of the Substance Abuse and Mental Health Services Administration (SAMHSA; cf. Congressional public law 102–321) given the disconnect between youth and families’ need for services, the SOC approach, and the variable federal financial priorities. The SAMHSA goal was to support substance abuse and mental health prevention and intervention in the United States through the establishment of a federal funding authority operated under the Department of Health and Human Services. Within SAMHSA, there are three major centers that currently fund prevention and intervention services. The Center for Mental Health Services supports the development of services for adults with serious mental illnesses and youth with serious emotional disturbances through the administration and oversight of SOC expansion awards, cooperative agreements, and mental health services block grant programs (i.e., a discretionary fund to help prevent and treat mental health disorders). The Center for Substance Abuse Prevention develops comprehensive prevention systems through national leadership in policy and programs through promoting effective prevention practices and applying prevention knowledge. Their goals are to build supportive workplaces, schools, and communities, drug-free and crime-free neighborhoods, and positive connections with friends and family. Similarly, the Center for Substance Abuse Treatment seeks to improve and expand existing substance abuse treatment and recovery services. This center administers the Substance Abuse Prevention and Treatment Block Grant Program and supports the free treatment referral service to link clients to community-based substance use disorder treatment. The SAMHSA operates an over ten billion a year budget with $225 million dedicated to children’s mental health and SOC initiatives in 2024 [ 12 ].

The Hawaiʻi State Department of Health Child and Adolescent Mental Health Division (CAMHD) is the state’s Medicaid behavioral health carveout and the primary agency responsible for developing and administering clinical services for approximately 2,000 youth each year. The CAMHD provides care coordination and clinical oversight at seven regional Family Guidance Centers statewide and delivers in-home (e.g., intensive in-home, Multisystemic therapy) and out-of-home (e.g., transitional family home, community-based residential, hospital-based residential) services through 17 community-based contracted agencies. A centralized state office oversees all administrative, clinical, and performance functions including annual reporting of youth served and clinical outcomes (see https://health.hawaii.gov/camhd/annual-reports/ ). The CAMHD has a longstanding history of SAMHSA SOC expansion awards beginning in 1994 and continuing to the present in an almost unbroken succession [ 13 ]. These developments began shortly after a class-action lawsuit was brought against the state (Felix v. Waihee, 1993), when Hawaiʻi was ranked among the lowest in the nation for youth mental health services [ 14 ]. The settlement, referred to as the Felix Consent Decree, resulted in federal oversight that lasted from 1994 to 2004 [ 15 , 16 ]. The federal decree mandated and oversaw the development of a statewide SOC, and in many ways complemented the goals of SAMHSA SOC expansion awards that overlapped with federal oversight and continued for two more decades. The various SOC awards operationalized SOC principles and ranged from filling in gaps within the service continuum to enhancing existing services through trauma-informed care, wraparound care coordination, and improved knowledge management systems.

The purpose of this study is to examine the Hawaiʻi State CAMHD system’s SAMHSA SOC award history to identify common themes, lessons learned, and recommendations for future funding. The first goal was to understand the development and evolution of SOC values and principles (e.g., youth and family voice) within and across each grant. The second goal was to describe and reflect on common themes and lessons learned through the 30 years and seven CAMHD SOC expansion awards. This is the first study to date that examines themes across previous SAMHSA SOC awards from one state’s perspective. There were no a prior hypotheses given the exploratory nature of this study. The intention was to contribute to research and improved practices around effective SOC grant implementation at the federal and state system levels.

This study used a two-phase qualitative approach with (a) content analysis on seven final project reports and (b) key informant interviews with 11 system leaders. Initially, for the final project reports, a matrix template was utilized to summarize data by domains consistent with SAMHSA’s Center for Mental Health Services Infrastructure Development, Prevention, and Mental Health Promotion indicators (e.g., Policy Development, Workforce Development) which would have allowed comparisons across multiple projects and domains. However, after multiple trials to code past project reports into the indicators, the two lead investigators (Okamura, Jackson) opted to use a grounded approach to identifying themes and lessons learned based on SOC values and principles. Initial results from project reports guided the information collected in interviews, which iteratively guided subsequent interviews until saturation and consensus was reached on the final themes.

For the interviews, a purposive sampling strategy was utilized to obtain feedback from system leaders who have had extensive experience within individual grant projects and/or across multiple SOC award projects within the state [ 17 ]. Interview participants included four previous grant project directors and seven system leaders whose roles included regional center chiefs (one who, at the time of data collection, was acting as the statewide chief administrator), clinical supervisors, training specialists, and a performance manager. All interviews were recorded and transcribed, except for one participant who declined to be recorded but whose responses were paraphrased in notes. The lead investigators conducted all interviews. A semi-structured interview was developed and used (see Supplemental File), which evolved during the study to further probe more specific themes that were emerging. Initial interview questions asked participants about what they remembered, lessons learned, and what recommendations they had based on the project. Additional probes were used to obtain their perspectives on areas including the project’s impact on the state’s mental health division and larger system of care, its impact on the specific project’s focus areas, and its impact on the division’s relationship with SAMHSA. In addition, participants were asked about their overall reflections on the SOC awards, thoughts on how they have impacted the system over multiple years, and how they could be best utilized in the future.

All data from project reports and interview transcripts were independently coded by the two lead investigators, who each reviewed every report and transcript. Data were analyzed using rapid qualitative analysis techniques [ 18 ]. Rapid qualitative analysis is well-suited for projects that aim to be completed in one year or less that do not rely on traditional transcription coding [ 19 ]. For this project, main points from interviews were summarized to provide a quick and accessible “sketch” of the data as data were organized and collected. These sketches were organized into a matrix to allow for quick identification of similarities, differences, and trends in responses [ 20 ]. ​Therefore, reliability calculations such as kappa or intraclass correlations were not appropriate for this method. This study was deemed exempt and non-human subjects research by the Hawaiʻi State Department of Health Institutional Review Board.

System of care principle development and application

The Hawaiʻi State CAMHD has operated seven SAMHSA SOC awards from 1994 to present day (2024) as detailed in Table  1 . Several project directors served multiple SOC awards which provided continuity. Specifically, Kealahou, Kaeru, and Data to Wisdom projects had the same project director, which helped to infuse trauma-informed care and bridge previous work in youth and parent partner services. There was variation in the project foci with some projects focused on developing SOC infrastructure (e.g., care coordination model) and others also focused on developing services (e.g., adaptive behavioral intervention) within the service array. The ʻOhana Project and Hoʻomohala both set foundations for the CAMHD SOC by establishing care coordination, contracted provider agencies, and building the service array. Kealahou, Laulima, and Kaeru projects continued to build the CAMHD SOC while focusing on targeted populations and specialty services. The Cultures of Engagement in Residential Care focused primarily on residential treatment settings and eliminating the use of seclusion and restraint. The Data to Wisdom grant focused on SOC development to infuse data driven decision making, knowledge management, and trauma-informed systems. Project geographic locations also changed over time from specific areas (e.g., urban Honolulu) to the broader overall statewide system.

System of care award themes

Content validation and interview coding revealed two content and two general process themes across the seven projects. Content themes were defined as areas that required long-term and consistent efforts across multiple projects and grants to develop. Content themes included (a) interagency collaboration and (b) youth and family voice. Process themes were defined as essential approaches to system improvement work. The general process themes reflected various aspects of (c) connection and (d) continuity, with more specific sub-themes within those.

Interagency collaboration

The first topic theme reflected the need for continual building of interagency collaboration across every project (see Fig.  1 ). From the first CAMHD SAMHSA award, the ʻOhana project, CAMHD coordinated interagency agreements with other child serving systems such as the Department of Education and Child Welfare Services. These child-serving system partners served as governing and advisory groups for the SOC awards, alongside consistent integration with other direct service provider agencies and academic partnerships to support the SOC. During Kealahou and Laulima, there was an effort to formalize the interagency collaboration through the execution of memoranda of agreements between agencies and targeted strategies to improve system collaboration, such as the multi-agency consent form. The formation of the Hawaiʻi Interagency State Youth Network of Care through revised statute furthered the commitment to interagency collaboration, which CAMHD and project directors have co-chaired. The development of interagency collaboration followed an advisory (e.g., members from other child-serving agencies contributing feedback to project goals and implementation), integration (e.g., formal advisory council and committee established), and leadership (e.g., chairing advisory council, and leading task forces and special projects) pathway for CAMHD. This theme is consistent with SOC values and principles and align with the priorities across funding announcements to build and enhance SOCs. Perceptions of key informants also reinforced the idea that interagency collaboration was a critical aspect of SOC development; however, successful collaboration is challenging to achieve (see Table  2 ).

Hawaiʻi state CAMHD interagency collaboration development

CAMHD = Hawaiʻi State Child and Adolescent Mental Health Division; CERC = Cultures of Engagement in Residential Care; D2W = Data to Wisdom

Youth and family voice

The second topic theme was youth and family voice, which represents the long road to fully integrating family voice from the system to the client treatment level (see Fig.  2 ). Parent and youth integration into governing councils and advisory boards to help guide grant activities began from the first award, the ʻOhana project. Eventually, parent and youth peer partner services became integrated into the treatment team level. There were several community-based organizations, like Hawaiʻi Youth Helping Youth, that supported youth and family voice through identifying and training advocates. These advisory activities continued, with more applied support to individual families and youth occurring in Project Kealahou. During this project, the priority to develop a sustainable infrastructure for youth and parent peer partners supporting individual families began. Medicaid reimbursement was pursued for the first time for youth and parent peer partner services, which continued in negotiations to amend the state plan for approximately 12 years. This reimbursement effort continued into the current SOC award, the Data to Wisdom project, with a focus on developing youth peer partner certification as a step toward successful Medicaid reimbursement. Similar to interagency collaboration, the youth and family voice theme progressed from an advisory role (e.g., having youth and families advise grant activities and goals) to informing service (e.g., hiring youth and parent advocates) to pursuing a standalone service (e.g., full integration of youth and parent peer services).

Informant interviews also shed light on the nuances of increasing family voice. New challenges and opportunities emerged alongside greater incorporation of and respect for youth and parent perspectives. One such challenge with youth and family voice is in building trust across different levels within a treatment team and system of care. Language remains a key moderator of trust building (see Table  2 ). Indeed, the SOC value of youth and family driven and principle of partnership with youth and families were applied differently as youth and parent voice became stronger within the treatment team with the support of peer partners.

Hawaiʻi state CAMHD youth and family voice development

Complementing the content themes were process themes related to how systems work should be accomplished to be successful, based on the experiences and recommendations of key informants. The first general process theme was encapsulated in the concept of “connection,” as it relates to (1) how services should connect youth to their family, community, and culture, (2) how workforce members should be connected to each other, and (3) how child-serving agencies should be connected to each other. Fostering these connections often goes beyond day-to-day roles and responsibilities and requires additional focused and sustained efforts.

Regarding the connection of youth to their family, community, and culture, one staff member noted a need for community-based interventions (see Table  2 ). Additionally, connection through communication and relationship building among workforce members and creating the structures to maintain relationships was described as important. One informant noted the importance of learning collaboratives in the project which created a shared place to connect and learn.

Finally, similar to the content theme of interagency collaboration being a continual endeavor, informants relayed many thoughts about how the system could connect agencies together to be more successful in the goal of system improvement. One leadership member noted the need for venues where legislators and other leaders from organizations to come together regularly to discuss issues (see Table  2 ). The connection not only built trust and clarified roles, but created shared responsibility within the SOC so that not one organization or body was making decisions independently of another.

The second general process theme was summarized in the concept of “continuity.” This theme emerged from comments about the importance of efforts such as (1) ensuring the continuity (sustaining) of interagency collaboration, (2) ensuring the continuity of new initiatives, (3) ensuring greater continuity (increased length) of award time periods, (4) ensuring continuity in the CAMHD model of care, (5) ensuring continuity in trauma-informed care, and (6) ensuring continuity in staffing. Overall, it was conveyed that better care for youth requires continuity throughout the system, from interagency collaboration to individual treatment.

First, ensuring continuity of interagency collaboration refers to the maintenance of the formal structures and relationships beyond a single project. For example, the establishment of Hawaiʻi Interagency State Youth Network of Care secured a platform for tackling issues that crossed agencies and could function independently from the restraints of single award periods (see Table  2 ).

More broadly, informants expressed difficulty in achieving sustainability and the need to ensure the continuity of new initiatives instead of them being a “one-off” or pilot projects. Some informants noted that typical award periods are not long enough to develop and sustain successful initiatives. As seen with the youth and family voice topic domain, it does take longer than a single grant to see any sort of transformational or long-term change.

The CAMHD model of care also emerged as a consistent topic throughout the final reports and interviews. The model of care was perceived as a pendulum swinging from a more intensive care coordination model, aligned with system of care values and care coordination principles, to a more “medical model” and managed care. As one person stated “we need to figure out what is our model…” and another informant noted some history related to care coordination to a medical model (see Table 2 ).

Trauma-informed care was a consistent thread in all SOC awards, and the importance of continuity emerged in interviews. Continuity was critical both at the system level, where consistent efforts needed to be made over multiple grant periods to build a more trauma-informed system, as well as the client level, where addressing a youth’s trauma requires time, patience, and consistency of support from the treatment team. As one person noted:

“it takes time to do trauma-informed care” and “you can only move as fast as the individual is able to move.”

Finally, a consistent challenge was in ensuring continuity in staffing. With limited award periods, staff begin to find other opportunities when funding nears the end and positions have not become permanent. Moreover, the start of new awards is typically delayed because of the challenges in establishing new positions and hiring new staff. A leadership informant noted that transitioning grant staff to new grants or from existing grants can cause disruptions to the system and staff morale.

The current study was a review on 30 years and seven awards given to the Hawaiʻi State Child and Adolescent Mental Health Division by the Substance Abuse and Mental Health Services Administration to expand the system of care. Two major topic themes of interagency collaboration and youth and family voice were identified that aligned with SOC values and principles. Two process themes of connection and continuity weaved throughout other SOC principles such as trauma-informed care. The Hawaiʻi State CAMHD continues to be a leader in SOC expansion despite ongoing administrative and fiscal challenges that common with other SOC expansion efforts [ 9 , 10 ]. Their dedication to SOC values and principles is evident in the investment of resources to start and close multiple awards, build interagency collaboration, and innovate within and across the child-serving system and its agencies.

Building interagency collaboration is one of the most difficult aspects of system improvement [ 9 ]. The CAMHD has needed to constantly invest resources (e.g., funding, personnel, legislation) to meet its goals. Lessons learned from interagency collaboration range from developments in coordinated interagency agreements with other child serving agencies (e.g., Department of Education, Child Welfare Services) which provided inbuilt advisory groups for SOC expansion, to consistent integration with other direct service provider agencies and academic partnerships to support that expansion, and finally through to formalization and strengthening of interagency collaboration through formal agreements and targeted strategies like the universal and multi-agency consent form. Networking within and between child-serving agencies was noted as an important aspect in building interagency collaboration. However, turnover can impact continuity and momentum. Legislation and policies have the potential to sustain collaboration and must be implemented with intention and proper funding to ensure high quality facilitation informed by equitable methods [ 21 ].

Partnering with youth and families has been a consistent theme in successful efforts to expand systems of care in other states, and the CAMHD has sought to continue developing this area through multiple grants despite ongoing challenges [ 9 , 10 ]. Lessons learned from youth and family voice range from the integration of parent and youth into governing councils and advisory boards, identification and training of advocates, and applied support to individual families and youth including the long and continuing work toward Medicaid reimbursement. It is interesting that the progression from youth and family voice informing service to a standalone service is representative of almost two decades of systems work. Systems change is truly a long-game and there have been many efforts to support these changes, including federal legislation and funding priorities (e.g., SAMHSA Office of Behavioral Equity and new funding priorities around marginalized communities). Moreover, updated SAMHSA funding announcements have explicitly called for language around culturally and linguistically appropriate, evidence-informed, recovery-oriented, trauma-informed care that highlights the commitment around SOC values and principles.

From these lessons, several areas for future attention emerged. These included considerations of the state and federal policies that often seem at odds with each other. As one informant noted: “we need to look at how the contracts and procurement is done.” This is particularly pertinent to state procurement laws which make it difficult to initially collaborate with and contract providers without a suitable means of paying them for their time, further complicating and delaying the work. A key leader noted:

I think the state system could really benefit from looking at how to support grants better and how to handle rules maybe differently, and procurement differently, and just be, provide more support…I think the state needs a grant office like a, you know, a university would have and they need to help us.

Moreover, establishing new funding accounts, job descriptions, and personnel management policies intersects divisional, departmental, state, and federal bureaucracies that often contribute to lengthy stalls in completing work and spending funds. For example, for the current SOC award, the project director was hired approximately six months after the notice of award, because the position needed to be established and associated with a new award and account code, despite the person already being in the previous SOC award project director position. Landscaping current federal and state policies on spending, procurement, and community collaboration may help to identify better pathways and strategies to executing federal grants within state infrastructure.

Furthermore, mental and behavioral health payment structures require ongoing attention. Stroul and Manteuffel noted that while award sites reported using a range of financing strategies, increasing Medicaid reimbursement was the most frequent strategy [ 11 ]. However, most strategies were not seen as very effective, and the highest effectiveness ratings were for increasing Medicaid funding, increasing state mental health funding, obtaining and coordinating funds with other systems, and redeploying funds to lower cost service alternatives [ 11 ]. Certification and credentialing processes that are needed for reimbursement are often time-intensive to develop and requirements may not align with health equity and lived experience. For example, in Project Hoʻomohala, a bachelor’s degree was required to hire a peer specialist. However, this requirement excluded many transitioned-age youth with lived experience who were more closely related in age which may have brokered trust and rapport more quickly. Initiatives that compare funding and certification rates and examine empirically the extent to which financing strategies improve service reach are necessary evaluation activities that should be included in SOC awards [ 22 , 23 ].

Programs for targeted populations and complex cases, which allow for flexible scheduling and funding, are also needed. Co-occurring mental health, disabilities, and substance use programs provide holistic care for youth and families. Special populations like racial, ethnic, sexual orientation, and gender/sex minorities that require adapted interventions should be a federal and state funding priority. As one interviewee noted:

Girls matter. Treatment for girls needs to be individualized more so than just, I don’t know, some of the EBS [evidence-based services] stuff you know, and I’m not knocking the EBS stuff, that is important. We need more research about girls. And that is a recommendation…The basic need is huge, so I think the lessons learned, we really do need more flexible funding to be able to support girls in their treatment, girls in their homes.

Improving integration into existing structures like home-based care, primary care, and school-based services, as well as integration of informal supports (e.g., youth peer support), requires continued effort to evolve with the changing managed care landscape. Payment and reimbursement strategies to incentivize practice use and improved clinical outcomes should also be considered.

Several recommendations emerged from the current study for operating future SAMHSA SOC awards in CAMHD and other state systems. First, there was enthusiasm for the focus of SOC awards to include more goals around infrastructure development and sustainment and to avoid “stand-alone” services. For example, one informant noted that “ It’s kind of a problem if you have a stand-alone service with its own team and it’s going to go away when the grant money is gone. ” Indeed, sustainability planning should begin prior to an infrastructure grant application being written to ensure there is a clear sustainable financial plan or objectives to continue pursuing funding for specific initiatives. Integrating procurement and administrative activities as specific and targeted award objectives, while unconventional, will emphasize the disconnect between federal and state procedures and spending priorities. Both state and federal legislators should be aware of funding mechanisms that have the potential to operate well in state government and to champion legislation that would create less bureaucracy in favor of the community. For example, including procurement clauses within federal funding announcements that allow for the federal government to supersede state laws may aid in timely execution of contracts using federal funds. Moreover, creating grants management, contracting, and fiscal positions that sit within procurement and administrative offices at the highest department level will be crucial to more timely execution of grant activities. Second, reliance on within-system historical knowledge is fraught with error. Future SOC awards should include evaluation objectives, like this project, to memorialize previous accomplishments, reflect on shared understanding and inconsistencies, and to archive important SOC activities in legacy documents. The third recommendation is related to communication within and between SOC awards by maintaining staff from one project to another. It is helpful to have ongoing role and responsibility clarification meetings internally and with child-serving system partners to avoid confusion and miscommunication. Learning collaboratives and protected time for project directors to share lessons learned and recommendations would aid in knowledge consolidation between projects. It would also be beneficial to allow for multi-year overlap of federal SOC awards to create continuity and retain employees. As one informant noted:

“And we recruited and hired a lot of really great people, and I think that the challenge becomes, as the grant starts to come to a close, or is nearing its end, that you recognize that people may leave because the positions are time limited. So, to the extent that it’s possible to think about positions for those folks, I feel like that is important.

Trauma-informed care principles are a necessary component of ensuring continuity of care. Trauma-informed care requires active responses in the form of integrating knowledge related to trauma into policies, procedures, and practices as well as careful attention to avoiding re-traumatization and secondary trauma of those involved in systems [ 24 ]. Lessons learned include making changes at the individual and organizational level to ensure that all aspects of care would be both transparent and trauma-informed. As one informant noted:

For example, in meetings, there were things that were being said in, in care coordination meetings, things that were being said that were offensive to the youth peers. And so there was a lot of work to prepare and debrief the youth peers after they were in meetings. We had peers that had previously been in care and saw their, their, their staff that they had worked with in some of our meetings. I mean, and had really negative experiences with them. And so the debriefing and you know, the secondary traumatic stress and the triggering even at the peers was intense. And so there was a lot of work with that that had to be addressed and done.

Guiding principles of trauma-informed care include creating a safety net instilled with trustworthiness and transparency, among others, to build confidence toward motivation for continued engagement [ 25 ]. Moreover, and consistent with interagency collaboration, a trauma-informed child-serving system should create a shared lexicon that speaks within and between agencies to improve navigation for youth and families. One informant noted:

And thinking about the needs of children as complex and they may have needs that span the way government agencies are organized. And so, recognizing that it is on the onus of government or organizations to be set up to better serve families rather than the onus on families to try to navigate really burdensome infrastructure to get the services that they need.

Limitations

The current study is not without limitations. First, the study relied on retrospective accounts of past project final reports and informant interviews. Both sources of information included objective and subjective accounts of previous SAMHSA SOC awards that represent a limited perspective. Moreover, key informants were identified via purposive sampling which may affect generalizability to other systems. Future research may wish to focus on convergence with multiple sources of objective data including financial reports, progress indicators, and any other technical assistance data available. Second, the information sources rely heavily on leadership and a small subgroup of CAMHD staff perspectives. It is unclear the extent to which some of these themes and lessons learned are uniformly understood throughout the various levels and roles within CAMHD and the child serving system. Additionally, the initial content coding design intended to rely on SAMHSA Infrastructure Development, Prevention, and Mental Health Promotion indicators (e.g., Policy Development, Workforce Development) to aid in generalizability to other systems. However, the indicator definitions were difficult to operationalize. For example, the Workforce Development categories contain five indicators that measure the number of organizations, communities, people, changes, and consumer or family members that are trained in, are credentialed or certified, implemented, and/or delivered mental health services. However, these metrics were almost never reported on within final reports and it was unclear how meaningful these metrics were to the system and aligned with SOC values and principles. While this study ultimately chose to use a grounded approach, future studies may wish to carefully think through key indicators to compare within and across systems over time. Despite these limitations, examining SAMHSA SOC awards within one system has the potential to inform how state and federal governments operate funds to support mental health innovation. Additional methods like landscape analysis and policy development could help to address the financial and administrative bureaucracy of operating federal funds in a state government association.

Federal funding is critical to addressing the youth mental health crisis [ 4 ]. The current study examined system of care expansion trends that represented multimillion-dollar investments and decades of work around interagency collaboration and youth and family voice, as well as attempts to build connection and continuity. It is hoped that the lessons learned will aid other systems and future work in being more evidence-informed. Similar delays in award progress and spending stemming from incongruencies between state and federal policies are consistent with previous SOC research and anecdotal reports from others involved in SAMHSA and SOC efforts. Targeted state alignment with federal policies and longer funding mechanisms may aid in ameliorating administrative burden on systems. That said, SAMHSA SOC expansion awards have the potential to fund innovative work that create legacy cultures around SOC values and principles.

Data availability

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

Abbreviations

Child and Adolescent Mental Health Division

Cultures of Engagement in Residential Care

Data to Wisdom

Hawaiʻi Interagency State Youth Network of Care

• Substance Abuse and Mental Health Services Administration
• System of Care

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Acknowledgements

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This work was supported by the Substance Abuse and Mental Health Services Administration (H79 SM082961). Okamura is also supported by the National Institute on Drug Abuse (L60 DA059132) and the National Institute of General Medical Sciences (U54 GM138062).

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Contributions

KHO and DJ contributed to the design and analysis of the study as well as interpretation of the results. DS and DLCC reviewed project final reports for discrepancies in themes identified in analyses. KHO drafted the first version of the manuscript. TH and PH provided writing support. DLCC created figures for the manuscript. DS reviewed and edited the manuscript. All authors made a significant contribution to the research and the development of the manuscript and approved the final version for publication. SKS supervised the study.

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Correspondence to Kelsie H. Okamura .

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Okamura, K.H., Jackson, D., Ching, D.L.C. et al. 30 years of youth system of care lessons learned – a qualitative study of Hawaiʻi’s partnership with the Substance Abuse and Mental Health Services Administration. BMC Health Serv Res 24 , 658 (2024). https://doi.org/10.1186/s12913-024-11114-9

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Zooming into Focus Groups: Strategies for Qualitative Research in the Era of Social Distancing

Lekshmi santhosh.

1 Department of Medicine, University of California-San Francisco, San Francisco, California

Juan C. Rojas

2 Department of Medicine, University of Chicago, Chicago, Illinois

Patrick G. Lyons

3 Department of Medicine, School of Medicine, Washington University, St. Louis, Missouri; and

4 Healthcare Innovation Laboratory, BJC HealthCare, St. Louis, Missouri

Associated Data

Qualitative research methods are important and have become increasingly prominent in medical education and research. The reason is simple: many pressing questions in these fields require qualitative approaches to elicit nuanced insights and additional meaning beyond standard quantitative measurements in surveys or observatons. Among the most common qualitative data collection methods are structured or semistructured in-person interviews and focus groups, in which participants describe their experiences relevant to the research question at hand. In the era of physical and social distancing because of the novel coronavirus disease (COVID-19) pandemic, little guidance exists for strategies for conducting focus groups or semistructured interviews. Here we describe our experience with, and recommendations for, conducting remote focus groups and/or interviews in the era of social distancing. Specifically, we discuss best practice recommendations for researchers using video teleconferencing programs to continue qualitative research during the COVID-19 pandemic.

Qualitative research focuses on exploring individuals’ perspectives related to specific research questions, issues, or activities ( 1 ). Frequently, structured interviews or focus groups are tools employed for data collection for qualitative research. In-person interviews are ideal, although phone and digital alternatives may be considered ( 2 , 3 ). However, little guidance exists for strategies for conducting focus groups or semistructured interviews in the era of physical and social distancing with the coronavirus disease (COVID-19) pandemic. In this article, we describe some strategies for conducting focus groups or structured interviews with the use of video conferencing platforms ( Figure 1 ). Video conferencing may provide researchers and research participants with a convenient and safe alternative to in-person qualitative research, albeit with some important limitations and considerations.

Key strategies to ensure successful remote focus groups and interviews. IRB = institutional review board.

Throughout 2019, we collaborated on a series of stakeholder focus groups to explore clinician experiences with patient handoffs between the intensive care unit and the wards. These focus groups, conducted in-person at our respective academic medical centers, helped us delineate key strengths and “pain points” of our handoff processes and identify facilitators and barriers to the user-centered design and implementation of a new process ( 4 ). We had scheduled subsequent in-person focus groups for this iterative design and testing process to take place in Spring 2020. However, we were forced to recalibrate our plans based on the rapidly changing COVID-19 situation and the situations of our intended participants (internal medicine residents). This article provides some practical guidance and reflections based on our experiences conducting semistructured focus groups using a videoconference platform with internal medicine residents at three academic medical centers. We outline our recommendations by describing the process of these remote focus groups, from planning and recruitment to the execution and technical troubleshooting of the videoconference.

Setting the Stage

More than ever, healthcare professionals are overtaxed because of increased clinical responsibilities; new or altered clinical environments and workflows; and increased burdens of administrative, educational, and investigatory work conducted by phone, e-mail, and video conference ( 5 – 7 ). Because of the school and childcare facility closures, many healthcare professionals may be engaged in nonclinical work while simultaneously caring for their children or supervising remote learning ( 8 ). With this in mind, we recommend that researchers carefully consider the timing of planned focus groups or interviews to maximize participation and minimize the strain on potential participants. Whenever possible, researchers should seek input on optimal timing and duration from potential participants.

The flexibility of video conferencing may potentially allow researchers to recruit participants by eliminating transportation and transit time barriers and allows for increased flexibility to consider scheduling focus groups or interviews at nontraditional times to accommodate the participants’ schedules.

Overall, we recommend that focus groups are conducted over video rather than audio if unable to be done in-person. Audio-only experiences are inherently more challenging than remote video sessions; it is difficult to tell when participants are speaking but muted, to identify an individual speaker among many participants, and to interpret tone and body language. In addition, audio-only encounters often limit crosstalk, which can enhance the depth of responses. We acknowledge that video is less private than audio, but it may be more private than in-person (e.g., a participant may decline to enroll in an in-person interview or group around a sensitive topic if they do not wish to be seen physically entering or exiting a known research room). Consent must specify whether audio alone is being recorded, or whether video and audio are both recorded.

Most importantly, before recruitment and consent, researchers should identify which video teleconferencing platform (e.g., Zoom, Google Meet, or Microsoft Teams) is best suited for the project ( Table 1 ); because these platforms share many of the same capabilities (e.g., screencasting/sharing and audio recording), this decision may be based on institutional adoption or availability.

Overview of several common videoconferencing platforms

Definition of abbreviation : HIPAA = Health Insurance Portability and Accountability Act.

Recruitment and Consent

Although some local institutional review board (IRB) procedures may have changed in response to COVID-19, qualitative research projects with human participants still require IRB review for determination of exempt status or formal approval. Researchers should obtain IRB approval to record the audio from the focus group or structured interview if a recording is desired.

Recruitment is likely to be predominantly virtual, in the form of e-mail “blasts” describing the study and providing the information needed for informed consent. After completing recruitment and selecting a video conferencing platform for the proposed research, we recommend providing attendees a password-protected electronic invitation to ensure the privacy of the session. In addition, it is helpful when this invitation includes an attached electronic calendar “event,” which can allow potential participants to quickly cross reference their electronic calendars, which are increasingly full of virtual meetings. Gray and colleagues found that participants wanted to synchronize these invitations with their electronic calendars and preferred the interview be limited to 1 hour at most, to avoid fatigue and schedule disruption ( 9 ). Zoom and other similar platforms offer a straightforward option for participants to add the session to their personal electronic calendars automatically. We recommend this method of invitation to increase convenience for participants who are increasingly accustomed to daily schedules of virtual meetings.

As with in-person focus groups, there is likely to be a “U-shaped” relationship between the number of participants and the volume and depth of insights gained within a session; too few participants may prevent dialogue and limit progress toward thematic saturation or uncovering new insights, whereas too many participants will preclude opportunities for deeper follow-up and will limit the amount of time that any single participant may contribute. Most commonly available videoconference platforms permit audience sizes of 50 or more, which far exceeds the number of participants a typical focus group would contain.

Presession Technical Preparation

It is crucial that researchers familiarize themselves with the interface and options of their chosen videoconference platform, both to maximize the effectiveness of their session facilitation and to improve their ability to solve common technical difficulties that may arise. This preparation should take place on the computing device that the researcher intends to use for research sessions to ensure that video, audio volume, and internet speed are adequate to host a successful video conference meeting. We recommend recording a practice session to become familiar with recording logistics and file storage locations, and to ensure the device’s microphone records clearly enough for participants’ hearing and transcription. Beyond the opportunity to troubleshoot the virtual platform, this practice session may also serve the second purpose of familiarizing the facilitator with the discussion questions.

Of note, researchers should evaluate the adequacy of their devices’ storage capabilities, given the large file sizes required to record audio and video. Many universities provide network storage solutions to members of their academic community, which may help facilitate storing large files. Importantly, if the research participants are patients, any recorded data (i.e., audio, video, and transcripts) are considered protected health information. These data require additional privacy considerations, especially around storage and electronic transfer. Because commercial video chat platforms may host or store files on their servers, the research team should ensure, ahead of time, that any commercial video chat platform used for research meets both the Health Insurance Portability and Accountability Act and institutional standards for secure data storage.

After successful completion of the trial run as a host, we recommend contacting the study participants before the session to ensure that any technical questions or concerns are addressed.

Introducing the Session

Initializing a virtual meeting is, in many ways, similar to initializing an in-person meeting. Like physical meetings, attendees may “trickle in” late because of preceding scheduled events or technical difficulties. We recommend allowing 1–5 minutes at the session’s beginning to account for late arrivals and to address technical issues if any are apparent. Once individuals are in the meeting, the facilitator can “lock” the session so uninvited attendees do not “Zoom-bomb.” In addition, researchers can further protect their meeting by using a Waiting Room, if available. Videoconference waiting rooms are virtual staging areas, which prevents attendees from joining a meeting until permitted, either individually or in a group, to enter. The facilitator should introduce the focus group or structured interviews just as they would an in-person session, including assurances regarding confidentiality, an overview of the session’s objectives, and an explicit statement of the session’s ground rules. The facilitator should obtain permission to record the focus group or structured interview and provide attendees the opportunity to leave the meeting if they do not consent to the recording. Finally, we recommend that researchers consider using a visual cue on a shared slide to remind them to initiate recording before beginning the session’s questions. Ideally, having two individuals record the meeting helps ensure redundancy so that if one individual has recording issues, the copy is preserved.

Depending on the size of the focus group or structured interview, the facilitator may wish to describe, at the meeting’s beginning, how attendee opinions will be solicited. For example, focus group participants can “unmute” themselves to speak or use the “raise hand” function on the meeting service. We recommend discouraging the use of the “chat” function because chat box contents are not recorded unless explicitly read aloud. If attendees do type in the chat box during the session, we recommend that the facilitator read the chat box contents aloud to capture these insights in the recording and transcript. Last, consider asking attendees to share their video feeds so participants and leaders can view attendee facial expressions and identify visual cues when individuals are about to speak (or are speaking, but are inadvertently muted). However, we recognize that this recommendation could limit participation by attendees without video-capable devices and/or put undue stress or burden on attendees who may be simultaneously parenting or multitasking. Above all, researchers should encourage attendees to make choices that will maximize their comfort with the session, and thus, maximize their contributions to the discussion.

During the Session

In general, remote qualitative inquiry sessions should follow a structure similar to that of face-to-face sessions. The facilitator should use effective moderation techniques online just as they would in-person. We have found that having an additional research team member serve as a scribe and timekeeper is helpful, if available. This teammate could also serve as a backup host if the primary host has unresolvable technical issues. Facilitators guiding semistructured interviews should ask follow-up probing questions and avoid sharing their own opinion, asking closed or leading questions, and other missteps that contribute to bias.

Within these general guidelines, however, the research team should be cognizant of the ways in which remote interactions differ from a live discussion. For instance, participants may be either more (e.g., because of additional perceived anonymity) or less (e.g., because of multitasking) likely to interact on videoconference, which may require proactive facilitation (e.g., direction questions or probes to individual participants). Similarly, a proactive facilitator may wish to be particularly attentive for openings to ask probing or follow-up questions, as some data suggest that online qualitative inquiry provides less opportunity for probing and follow-up ( 10 ). Furthermore, microphone technology is likely to preclude the degree of crosstalk seen in many face-to-face focus groups, which could limit the depth and quality of dialogue elicited. This lack of crosstalk may inhibit the ability to develop social norms, which are often a key factor distinguishing focus groups from individual structured interviews. It is not known whether facilitator behaviors or factors like focus group size can modify these limitations, although certain characteristics of focus group questions (e.g., open-ended) appear to yield richer discussion and data ( 10 ). Finally, if an audio-only focus group is the only option, we suggest using a visual model (e.g., a map or list of participants) to remind the facilitator of focus group participants, so notes can be transcribed visually under each participant.

Researchers should consider the need to maintain the privacy and potential anonymity of all participants, as outlined in the project’s IRB protocol. This consideration should also include any potential protected health information if the participants are patients. If strict anonymity is required, avoid stating participants’ names during the recording. If deidentification during transcription or review is appropriate, using the names of participants may increase the connection between the facilitator and the respondent, allowing for greater psychological safety.

After the Session

Concluding a virtual interview or focus group is similar to concluding an in-person session of the same type. The researchers should thank participants for their time, particularly given the stressors of the pandemic. In addition, we recommend discussing criteria for possible follow-up discussions. After ending the recording, ensure the file is saved to a secure location. Use professional transcription software to transcribe the audio recording from the focus group. Analyze the data with the qualitative framework outlined in the study design stage.

Because qualitative analysis of remote interviews and focus groups is typically conducted on transcribed audio, the decision to use a video platform often has little impact on data analysis. However, in some situations, the recorded video may prove advantageous. For example, the inclusion of video might facilitate the differentiation of speakers or clarification of unclear words during transcription or transcript reviews. Similarly, video might provide context around pauses, hand gestures, or facial expressions. Whether remote sessions have the same Hawthorne-esque effect on participants (i.e., do they behave in a particular way because of their awareness of being observed) is unknown. For instance, it is possible that participants behave differently when observed on video as compared with an audio-only (e.g., telephone) experience, or as compared with an in person session. One implication of this possibility could involve the perceived acceptability of multitasking or split attention; not infrequently, video participants elect not to share their individual video feeds.

Common Pitfalls and Strategies for Success

Qualitative interviews and focus groups, regardless of the setting, are subject to certain pitfalls along with a project’s progression from research question to analysis and dissemination. For instance, suboptimal recruitment practices (e.g., lack of advertisement) may limit enrollment, whereas incomplete or rushed interview scripts may not elicit complete or nuanced insights from participants. For remote interviews or focus groups, distance and technology may present additional obstacles (or interact with known risks), which can threaten a project’s success ( Table 2 ). Overall, the virtual qualitative experience offers a tradeoff between participant availability and an increased number of potential distractions. Whether these potential threats to qualitative insight are worth access to participants who might be unable to attend face-to-face sessions is likely to vary across research questions and teams of investigators. In general, these pitfalls can be avoided or mitigated with careful preplanning, practice sessions, and deliberate attention to areas of risk.

Potential remote focus group pitfalls and related strategies for success

Definition of abbreviation s: IRB = institutional review board; HIPAA = Health Insurance Portability and Accountability Act.

Conclusions

We hope that these practical tips can help with conducting rigorous qualitative inquiry through remote focus groups or structured interviews in the era of physical and social distancing.

Supplementary Material

Supported by an APCCMPD, CHEST, and ATS Education Research Award (L.S.).

Author Contributions : Conception and design: P.G.L. Drafting of the article: L.S., J.C.R., and P.G.L. Critical revision of the article for important intellectual content: L.S., J.C.R., and P.G.L. Final approval of the article: L.S., J.C.R., and P.G.L. Administrative, technical, or logistic support: P.G.L.

Author disclosures are available with the text of this article at www.atsjournals.org .

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Cervantes L , Rizzolo K , Indovina KA, et al. Assessment of a Peer Support Group Intervention for Undocumented Latinx Immigrants With Kidney Failure. JAMA Netw Open. 2023;6(6):e2319277. doi:10.1001/jamanetworkopen.2023.19277

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Assessment of a Peer Support Group Intervention for Undocumented Latinx Immigrants With Kidney Failure

• 1 Department of Medicine, University of Colorado, Anschutz Medical Campus, Aurora
• 2 Division of Renal Diseases and Hypertension, University of Colorado, Anschutz Medical Campus, Aurora
• 3 Department of Medicine, Denver Health and Hospital Authority, Denver, Colorado
• 4 Gyedi Project, Denver, Colorado
• 5 Denver University Graduate School of Social Work, Denver, Colorado
• 6 Division of Nephrology, Denver Health and Hospital Authority, Denver, Colorado
• 7 Institute for Health Research, Kaiser Permanente Colorado, Aurora
• 8 Office of Research, Denver Health and Hospital Authority, Denver, Colorado

Question   Is a peer support group feasible, acceptable, and of value for undocumented immigrants with kidney failure who rely on emergency dialysis?

Findings   In this qualitative study of 23 undocumented immigrants with kidney failure receiving emergency dialysis, a peer support group intervention had high recruitment, retention, and delivery rates, suggesting it was feasible. Interviews suggested that the intervention was acceptable and valued by participants, who stated that it built camaraderie and a means to share strategies for self-advocacy.

Meaning   These findings suggest that a peer support group may be a patient-centered strategy to provide peer emotional support and camaraderie for undocumented immigrants with kidney failure.

Importance   Most undocumented immigrants with kidney failure rely on emergency dialysis (defined as dialysis after a patient presents as critically ill) and experience significant depression and anxiety and high mortality. Culturally and language-concordant peer support group interventions may be associated with reduced depression and anxiety and may provide emotional support.

Objective   To investigate the feasibility and acceptability of a single-group peer support group intervention.

Design, setting, and participants   This qualitative and single-group prospective study for undocumented immigrants with kidney failure receiving emergency dialysis was conducted in Denver, Colorado, from December 2017 to July 2018. The 6-month intervention included peer support group meetings in the hospital while participants were hospitalized for emergency dialysis. Data were analyzed from March to June 2022.

Main outcomes and measures   To assess feasibility, the recruitment, retention, implementation, and delivery for the intervention were tracked. To measure acceptability, interviews were conducted with participants using a structured format. To assess the value of the peer support group intervention, themes and subthemes were identified from interviews with participants and group meetings.

Results   Of 27 undocumented immigrants with kidney failure receiving emergency dialysis, 23 participants (9 females [39.1%] and 14 males [60.9%]; mean [SD] age, 47 [8] years) agreed to participate (recruitment rate, 85.2%). Among them, 5 individuals withdrew and did not attend meetings and 18 participants (retention rate, 78.3%) attended a mean of 6 of 12 meetings (50.0%). From interviews and meetings, 3 themes, with associated subthemes, were identified: camaraderie and emotional support from peers (subthemes: peer support is vital for people newly diagnosed with kidney failure, safe space to build relationships and share hardship with peers, hospital setting for peer support is ideal, solidarity to survive and change policy, and sustainability of the peer support group), solutions to improve care and resilience (subthemes: self-advocacy, self-motivation and optimism, kidney disease education, emotional support from peers caregivers, and faith), and emotional and physical aspects of receiving emergency dialysis (subthemes: psychosocial and physical distress, mixed experiences with language-concordant care, emotional exhaustion from end-of-life conversations, and gratitude for clinicians).

Conclusions and relevance   This study found that peer support group intervention achieved feasibility and acceptability. The findings suggest that a peer support group may be a patient-centered strategy to build camaraderie and provide emotional support in kidney failure, especially for socially marginalized uninsured populations who report limited English proficiency.

Latinx individuals experience a 2.1-fold greater incidence of kidney failure than non-Latinx White individuals and face structural racism and discrimination that contribute to kidney health disparities. 1 Compared with non-Latinx White individuals, Latinx individuals are less likely to receive predialysis nephrology care 2 or a living donor kidney transplant 3 or be treated with home dialysis therapies. 4 Latinx individuals with kidney failure face a disproportionate burden of social challenges, including poverty, lower levels of education, and limited English proficiency. 5 - 7 People with undocumented US citizenship status (ie, people who entered the US without proper documentation) are primarily Latinx and face additional challenges. Undocumented immigrants are barred from all Medicare health care coverage and the Patient Protection and Affordable Care Act marketplace exchange plans. 8 In most states, availability of dialysis is limited to emergency dialysis, defined as hospital-based dialysis when the patient is critically ill. 9 Compared with scheduled, thrice-weekly dialysis, emergency dialysis was found to be associated with a higher hospitalization rate, 10 4 times the yearly cost, 11 , 12 and 5-fold and 14-fold higher mortality rates at 1 and 5 years, respectively 10 Undocumented individuals receiving emergency dialysis face significant psychosocial distress associated with the weekly accumulation of symptoms, frequent near-death experiences, unpredictable access to dialysis, and a high level of burden on their caregivers. 13 - 15

Undocumented immigrants receiving emergency dialysis have reported high levels of depression, anxiety, and reliance on family and peers for support. 6 , 15 - 17 Peer support group programs provide patients and their caregivers with social, emotional, and health information support. 18 - 20 In a systematic review, 19 more than two-thirds of peer support programs reported improvement in health outcomes. To our knowledge, peer support interventions for undocumented Latinx individuals receiving emergency dialysis have not previously been studied. In this study, we evaluated the feasibility and acceptability of a single-group peer support group intervention during hospitalization for undocumented individuals receiving emergency dialysis.

This was a 6-month, single-group, prospective qualitative study of a peer support group intervention. The Colorado Multiple Institutional Review Board (COMIRB) approved this study. All study participants provided written informed consent. We used the Consolidated Criteria for Reporting Qualitative Research ( COREQ ) reporting guideline.

Eligible participants were adult, undocumented, English- or Spanish-speaking immigrants who self-identified as Latinx/o/a, Hispanic, or both; were diagnosed with kidney failure; and were typically admitted for emergency dialysis on a Tuesday. Race demographics were not collected; only ethnicity was collected given that this was part of inclusion criteria. Institutional policy was to admit these patients overnight every 7 days, and Tuesday was selected for this study because on that day, there were a mean of 14 patients hospitalized for emergency dialysis.

The study lead investigator (L.C.) identified patients, and a culturally and language-concordant research assistant approached participants face to face for study enrollment in December 2017 and January 2018. Participants received $20 compensation for enrollment and $5 for each meeting they attended.

Participants attended 90-minute support group meetings in a hospital conference room on Tuesday evenings while hospitalized for emergency dialysis. To build trust and personalismo (personalized relationships, a Latinx value), meetings had the following structure. (1) The research assistant led meetings. (2) Participants collectively selected topics. (3) Every meeting was started with an icebreaker. (4) A dinner prepared according to a kidney-friendly diet was provided. (5) An optional arts and crafts activity was available. (6) One caregiver per participant was invited. (7) Meeting frequency was weekly for 1 month followed by every 2 weeks for 2 months and then monthly for 3 months. The peer support group intervention lasted 6 months, and there were 12 meetings.

Primary outcomes were feasibility and acceptability, 2 preliminary steps toward the design of an intervention trial. To assess feasibility, we tracked recruitment, retention, and intervention implementation and delivery (ie, frequency, number, and duration of meetings). To measure acceptability, we conducted interviews with participants using a structured format. Meetings were audio-recorded, translated, and transcribed to assess the value of peer support relationships and analyze themes that participants emphasized. Verbatim quotes from meetings and interviews conducted in Spanish were translated to English by a translation company (Datagain). Exploratory measures were collected at baseline and study completion. Anxiety and depression were assessed using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Patient Health Questionnaire 9 (PHQ-9). The GAD-7 includes 7 symptoms of generalized anxiety disorder, and the PHQ-9 includes 9 criteria for depression, with 1 item asking about ideation of suicidal behavior or self-harm. Scores are calculated based on how frequently a person experienced symptoms over the last 2 weeks (eg, a “not at all” response is scored as 0, “several days” as 1, “more than half the days” as 2, and “nearly every day” as 3). The sum of these responses gives a total score. For the PHQ-9, a score of 4 or less is minimal depression, 5 to 14 is mild (5-9) to moderate (10-14) depression, and greater than 14 is moderate severe (15-19) to severe depression (20-27). For the GAD-7, a score of 0 to 4 is minimal anxiety, 5 to 9 is mild anxiety, 10 to 14 is moderate anxiety, and greater than 15 is severe anxiety.

Interview transcripts were analyzed by 4 study members (L.C., K.R., K.A.I., and C.H.) of the COMIRB-approved study team using Excel software (Microsoft) from March 1 to June 1, 2022. In this team, 2 members (L.C. and K.A.I.; internal medicine physicians) had previous clinical interactions with participants, while 2 other members (K.R. [nephrology physician] and C.H. [epidemiologist]) did not. Coding and analysis were conducted according to principles of grounded theory and thematic analysis. 21 , 22 Line-by-line coding was performed to inductively identify concepts. Similar concepts were grouped into initial themes and subthemes, and then conceptual links among them were identified. Consensus on themes and subthemes was reached after review of the analysis and discussion to ensure that findings reflected the full range and depth of data. 21 , 22 Our study was not powered to detect changes in exploratory measures, and we thus provide results at baseline only.

A total of 23 Latinx adults participated (9 females [39.1%] and 14 males [60.9%]; mean [SD] age, 47 [8] years) among 27 individuals who were approached ( Table 1 ), for a recruitment rate of 85.2%. There were 12 meetings, with a mean (SD) duration of 88 (19) minutes. During the first meeting, participants selected topics they wanted to discuss (eTable in Supplement 1 ).

Of 23 participants, 5 participants withdrew prior to meetings and 18 participants (retention rate, 78.3%) attended a mean of 6 meetings (50.0%). Reasons for withdrawing included that the participant moved to Mexico (2 participants), transitioned to a different inpatient dialysis schedule (2 participants), and transitioned to outpatient scheduled dialysis (1 participant). No common patterns of missing meetings were identified. Reasons for missing a meeting included admission to the medical intensive care unit, being on isolation status, a change in the date of weekly hospital admission, and admission to another hospital. We identified 3 themes. The first 2 themes (camaraderie and emotional support from peers and solutions to improve care and resilience) related to the acceptability of the peer support intervention, and the third theme (emotional and physical aspects of receiving emergency dialysis) related to experiences receiving emergency hemodialysis ( Table 2 ) .

Participants described emotional distress when first learning of their diagnosis because they did not understand their diagnosis, prognosis, or what it would mean to receive only emergency dialysis. One participant said, “I was devastated when they told me about my kidneys. I wanted to die. …I think someone newly diagnosed with kidney failure must be encouraged.” Participants also described the importance of sharing about symptom accumulation leading up to emergency dialysis with those who were newly diagnosed so they could “learn the ropes.”

Participants described that it was difficult to get to know each other in the inpatient dialysis center setting, while the peer support group setting allowed for more personalized connections and relationship building. One participant said, “When you are sitting down at a dialysis chair, you really don’t get to interact much with others compared to getting to know each other at these meetings.” Participants also felt camaraderie and the importance of a safe space for sharing personal hardship and learning from each other about their illness. They described challenges in sharing their physical symptoms and anxiety about death with family. One participant said, “it can be difficult…to talk to your kids because you don’t want your kids to become very depressed. They might try to commit suicide or do poorly in school.” Another participant said, “it’s important to ask questions in a way that you don’t feel judged. …here, no one will scold you.”

Participants described feeling physical distress after having “so much fluid removed” after 7 days without dialysis. Meeting in the hospital setting was ideal for participants who were physically stressed and needed to cope with emergency dialysis. One participant said, “It was a good way to interact with people because it helped me cope with the stress from dialysis. …after getting done with dialysis, you don’t always feel your best. …I really liked getting together with other people who are going through this.”

Group members supported each other in advocating for receipt of outpatient dialysis and reducing financial burdens by obtaining private health insurance. Participants decided they would fundraise and use the money to support those who needed health insurance. One participant said, “we don’t have money to pay for medication…but we all have to work. …we can donate and receive according to our finances. This is what this group is about—if we unite, we can get through this.” The group also developed a messaging application (WhatsApp) and social media (Facebook) group for members and their families to communicate about fundraising, social resources, and advocacy.

Participants expressed enjoying group sessions and made plans to spend time together outside the hospital setting. When the study was coming to an end, participants formalized the peer group by developing a nonprofit organization called Club Riñones Latinos (Latino Kidney Club). One participant said, “we want to make a group because we all have kidney issues and not a lot of information. …motivating ourselves is the best strategy.” Another participant said, “We have in mind to create a group, but we don’t know how to build relationships with funders. …we wouldn’t be talking about creating this group if you hadn’t brought us together.”

Self-advocacy was discussed during every meeting as a means for participants to improve their care. For example, participants discussed downloading a phone translation application so that they could ask clinical care–related questions. They also shared thoughts about the “chain of command” and understanding which individuals they could access if they needed to address a hospital issue. They spoke about avoiding physicians who treated them badly. They noted the importance of knowing one’s body and being adamant when dialysis needed to be stopped to avoid excess fluid removal.

Participants described that staying healthy was a personal decision because individuals can choose to believe that they are going to die or live a long life. One participant said, “I haven’t been doing this for long, but…when they started me on dialysis…a lot of people said I was going to die. But kidney failure will not kill you if you don’t want it to. You can be okay if you want. You can live a lot of years. …it’s all up to you.”

Participants described learning about kidney disease on their own. Some participants formed close relationships with their clinicians and asked questions about their kidney disease. One participant said, “There’s a point that I think is very important: to have a very open communication with your doctor. I have done this, and thank God, because she’s helped me a lot.” They also talked about the importance of being honest with their dietitians about culturally traditional foods so that they could receive clarity on dietary restrictions.

Participants described that their family, caregivers, and peers provided support and motivation to stay healthy. With respect to peer support, one participant said, “I was feeling very depressed at the beginning, and then once I was going through the program and attending the meetings, it was giving me more hope.” With respect to family, 1 participant said, “I think it’s also having a partner that says, ‘Hey, how are you? Snap out of it!’ Or having someone that asks you, ‘How do you feel?’”

Faith played a major role among participants in coping with emergency dialysis. Participants described praying often and using their faith to foster resilience and gratitude for life. One participant said, “I have a lot of faith in God, and I pray a lot. …I understand that everything happens for a reason and that everything happens on God’s time. …God is going to give me time to meet my grandkids and spend time with them.”

Participants described feelings of depression and weekly anxiety from symptoms. One participant said, “I get a panic attack because I don’t want to die. …I think that if I go to sleep that I won’t wake up again.”

Participants had varied experiences receiving language-concordant care, including having to self-advocate for an interpreter, working with interpreters who did not interpret well, and asking for Spanish educational materials after receiving them in English. One participant said, “there are good and not-so-good interpreters. …There are interpreters who say whatever they want and I’ve had to say, ‘Excuse me, I didn’t say that.’”

Participants reported feeling emotionally weighed down by weekly conversations about end-of-life care and advance directives. These conversations took place weekly because they were part of the hospital admission history and physical. Participants reported that these conversations exacerbated their sense that death was imminent. They also described that talking about or making plans for death were taboo in their culture, and they wondered if their clinicians were discussing end-of-life care because they wanted the participant to die. One participant said, “when clinicians talk about advance directives and end-of-life [care], I’m not sure if they want to inform me or scare me. ...is this the doctor’s way out of responsibility because they want us to die?” Others said they felt it was a good idea to be prepared and make plans early.

Participants expressed gratitude toward clinicians with whom they had built close relationships during weekly hospital admissions. Participants said they were aware that clinicians and the hospital were required to provide emergency dialysis rather than standard outpatient dialysis because of state policies. Participants also expressed gratitude for emergency dialysis, stating that in their home countries, they would have died because emergency dialysis was not offered.

In this single-group, prospective qualitative study, we found that a peer support group support intervention for undocumented immigrants with kidney failure receiving emergency dialysis was feasible and acceptable. To our knowledge, this is the first prospective peer support group intervention for this population and so may represent a novel strategy to provide emotional support to a uniquely marginalized community whose members face mistrust and discrimination and lack health care coverage.

Peer support may represent a powerful tool associated with an improved illness experience among undocumented immigrants receiving emergency dialysis. In previous studies of patients experiencing chronic kidney disease, peer support was associated with improved self-efficacy and emotional well-being, increased aid in treatment decisions, and increased help for patients developing coping strategies to manage their conditions. 23 , 24 For people with kidney disease who are from minoritized racial and ethnic backgrounds, peers with similar cultural backgrounds and lived experiences have been found to be an important source of support. 7 , 19 , 25 In 1 study 26 using culture-concordant peer support for Latinx individuals with breast cancer, participants reported that peer support helped them express their feelings, feel less anxious and depressed, learn to ask questions, and express their needs to health care professionals and made them feel that someone understood their experience. A peer-led and culturally tailored support group intervention for Mexican-American individuals with type 2 diabetes was associated with increased empowerment and self-efficacy among participants. 27 Our data suggest the potential value of peer support for improved depression and anxiety, as well as the provision of emotional support through sharing of lived experiences, self-advocacy, and coping mechanisms.

Participants in our study shared struggles with emergency dialysis, such as anxiety and depression, and encouraged each other to discuss these issues with their families and clinicians. Individuals encouraged each other to advocate for themselves while hospitalized by asking for interpreters or knowing their dry weight to avoid sequelae of hypotension in dialysis. Moreover, participants discussed their awareness of the injustice of not being able to receive optimal treatment owing to their immigration status; however, they also said they felt gratitude for the care received because dialysis was not available in their home countries.

An important finding from our study was the use of peer support to promote self-advocacy with policymakers. After this study, participants organized themselves and engaged in research and advocacy with the study team (L.C. and C.C.). Participants formed the Latino Kidney Club, and they developed their own social media and messaging application groups to communicate about advocacy, fundraising, and social resources. Additionally, many participants partnered with L.C. and C.C. to engage in community-based research and to publish studies finding worse outcomes with emergency dialysis. 14 , 15 In 2019, a coalition of patients and partners (eg, clinicians, community organizations, and policy leaders) successfully expanded access to standard outpatient hemodialysis for undocumented immigrants with kidney failure through a billing change in Emergency Medicaid. 9 , 28 Colorado became the twelfth state to explicitly expand health care coverage of standard dialysis through Emergency Medicaid; 4 years later, 20 states provided statewide health care coverage of standard outpatient hemodialysis. 29

This study may have key implications for patients with chronic disease who are members of marginalized populations. Other studies examining the role of peer-to-peer mentoring for patients receiving dialysis found that patients receiving dialysis who were mentored had fewer missed dialysis treatments, improved end-of-life discussions, and increased self-efficacy and social support. 30 - 32 Implementing a peer support program requires identifying, educating, and supervising peer mentors; a 2023 study 33 found that this was feasible, and multiple organizations, including the National Kidney Foundation and Centers for Medicare & Medicaid Services, offer peer-mentoring services for patients receiving dialysis. 34 - 36 However, challenges remain, including engagement of patients receiving mentoring and consistent training for mentors. Peer mentorship may also be held outside the dialysis center, allowing for greater privacy, but would require modifying the workflow of the dialysis unit. For undocumented immigrants receiving emergency dialysis, peer support offered a source of companionship in our study. A future randomized clinical trial of peer support may investigate improved depression, anxiety, and emotional resilience through sharing coping mechanisms. Lastly, our findings suggest that peer support may be a powerful tool to promote self-advocacy and patient engagement in treatment choices.

This study has several limitations. Our work included a small sample size and recruited from a single hospital system; therefore, our findings may not be generalizable. Policies for emergency hemodialysis vary by institution, and there may be differences in patient lived experience in access to dialysis care. Furthermore, all study participants were Latinx; therefore, their illness experience cannot be generalized to other racial and ethnic groups. An additional limitation of this study is that race was not collected. Latinx individuals self-report being of any race. Although race is a social construct, it is important to collect race data because systemic and structural racism are pervasive and fundamental causes of health disparities through discrimination and unequal distribution of resources, wealth, and power. According to the US Census, Colorado Latinos as a group self-report as 1.7% American Indian, 3.6% Asian, 4.7% Black, and 86.5% White. 37

In this qualitative study, undocumented immigrants with kidney failure who relied on emergency dialysis described wanting to formalize a peer support group because they reported camaraderie and learned strategies to improve their resilience, including self-advocacy and optimism. Our results suggest that group peer support may be feasible and acceptable; it may also provide a patient-centered strategy to address the need for depression, anxiety, and social support services among patients with kidney failure, especially for socially marginalized, uninsured populations whose members report limited English proficiency.

Accepted for Publication: May 4, 2023.

Published: June 21, 2023. doi:10.1001/jamanetworkopen.2023.19277

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2023 Cervantes L et al. JAMA Network Open .

Corresponding Author: Lilia Cervantes, MD, Department of Medicine, University of Colorado, Anschutz Medical Campus, 12401 E 17th Ave, Aurora, CO 80045 ( [email protected] ).

Author Contributions: Dr Cervantes had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Cervantes, Camacho, Alamillo, Chandler, Chonchol, Welles, Steiner, Hasnain-Wynia.

Acquisition, analysis, or interpretation of data: Cervantes, Rizzolo, Indovina, Hazel, Welles, Steiner.

Drafting of the manuscript: Cervantes, Rizzolo, Indovina, Hazel, Welles.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Cervantes, Indovina, Welles.

Obtained funding: Cervantes.

Administrative, technical, or material support: Cervantes, Camacho, Alamillo, Chandler.

Supervision: Cervantes, Chonchol, Steiner, Hasnain-Wynia.

Conflict of Interest Disclosures: Dr Cervantes reported serving on several boards, including for the Center for Health Progress, Vuela for Health, Public Benefits Corporation Colorado Connect, and Denver Health and Hospital Authority and receiving grants from the National Institutes of Health (NIH) National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) during the conduct of the study. Dr Rizzolo reported receiving grants from the NIH NIDDK during the conduct of the study. Dr Chonchol reported receiving grants from the NIH NIDDK during the conduct of the study and outside the submitted work. Dr Steiner reported receiving grants from the NIH outside the submitted work. No other disclosures were reported.

Funding/Support: This study was supported by internal funding from the University of Colorado School of Medicine.

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Data Sharing Statement: See Supplement 2 .

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• Open access
• Published: 21 May 2024

Ethical perspectives regarding Euthanasia, including in the context of adult psychiatry: a qualitative interview study among healthcare workers in Belgium

• Monica Verhofstadt 1 ,
• Loïc Moureau 2 ,
• Koen Pardon 1 &
• Axel Liégeois 2 , 3  

BMC Medical Ethics volume  25 , Article number:  60 ( 2024 ) Cite this article

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Introduction

Previous research has explored euthanasia’s ethical dimensions, primarily focusing on general practice and, to a lesser extent, psychiatry, mainly from the viewpoints of physicians and nurses. However, a gap exists in understanding the comprehensive value-based perspectives of other professionals involved in both somatic and psychiatric euthanasia. This paper aims to analyze the interplay among legal, medical, and ethical factors to clarify how foundational values shape the ethical discourse surrounding euthanasia in both somatic and psychiatric contexts. It seeks to explore these dynamics among all healthcare professionals and volunteers in Belgium.

Semi-structured interviews were conducted with 30 Dutch-speaking healthcare workers who had encountered patients requesting euthanasia for psychiatric conditions, in Belgium, from August 2019 to August 2020. Qualitative thematic analysis was applied to the interview transcripts.

Participants identified three pivotal values and virtues: religious values, professional values, and fundamental medical values encompassing autonomy, beneficence, and non-maleficence, linked to compassion, quality care, and justice. These values interwove across four tiers: the patient, the patient’s inner circle, the medical realm, and society at large. Irrespective of their euthanasia stance, participants generally displayed a blend of ethical values across these tiers. Their euthanasia perspective was primarily shaped by value interpretation, significance allocation to key components, and tier weighting. Explicit mention of varying ethical values, potentially indicating distinct stances in favor of or against euthanasia, was infrequent.

The study underscores ethical discourse’s central role in navigating euthanasia’s intricate landscape. Fostering inclusive dialogue, bridging diverse values, supports informed decision-making, nurturing justice, and empathy. Tailored end-of-life healthcare in psychiatry is essential, acknowledging all involved actors’ needs. The study calls for interdisciplinary research to comprehensively grasp euthanasia’s multifaceted dimensions, and guiding policy evolution. While contextualized in Belgium, the implications extend to the broader euthanasia discourse, suggesting avenues for further inquiry and cross-cultural exploration.

Peer Review reports

Medical assistance in dying is allowed in 27 jurisdictions in the world and if so, it is mainly restricted to the terminally ill (see BOX 1 in OSF) [ 1 ]. Medical assistance in dying entails that a patient’s death request can be granted via euthanasia , defined as the intentional termination of life by a physician at the patient’s explicit request, which is currently decriminalised in Australia, Belgium, Canada, Colombia, Luxembourg, the Netherlands, Spain, and New Zealand. In addition, it can be granted by means of assisted suicide , also defined as the intentional termination of life by a physician at the patient’s explicit request, but in these cases, the lethal drugs are provided by a physician and self-administered by the patient at a time of the latter’s own choosing (e.g., Australia, Austria, Switzerland, United States). In some countries, not only a physician, but also a nurse practitioner can be involved in the procedure (e.g., Canada, New Zealand).

Euthanasia has been legal in Belgium since 2002, positioning the country as a pioneer in this field with two decades of euthanasia practice [ 2 ]. According to Belgian legislation, individuals can be deemed eligible for euthanasia when they are, among other criteria, in a medically futile state characterized by constant and unbearable physical or psychological suffering resulting from a serious and incurable disorder caused by accident or illness [ 2 ]. Belgium is one of the few countries that does not exclude people from assisted dying who suffer predominantly from irremediable psychiatric conditions (see BOX 2 in OSF for all legal criteria in Belgium). As regards prevalence, euthanasia accounted for up to 3.1% of all registered deaths in 2023 in Belgium [ 3 ]. Whereas most registered euthanasia deaths concerned the terminally ill (approximately 84%), predominantly suffering from cancer, only 48 or 1.4% of euthanasia deaths concerned non-terminally ill adults predominantly suffering from psychiatric conditions. Since euthanasia was legalised, in total 457 such euthanasia cases have been reported, less than 1.5% of all registered euthanasia cases in Belgium [ 3 , 4 , 5 , 6 , 7 , 8 , 9 ].

However, this is only the tip of the iceberg, as there is reason to believe that the total number of requests for euthanasia in Belgium (regardless of outcome), is at least 10 times higher. For instance, recent annual reports from Vonkel, an end-of-life consultation centre in Belgium, revealed around 100 unique patients per year applying for euthanasia for psychiatric reasons. Less than 10% of those euthanasia requests were reported to be carried out [ 10 , 11 , 12 ]. Moreover, a recent survey among psychiatrists working in Flanders, Belgium, revealed that 8 out of 10 respondents had been confronted at least once throughout their career with patients requesting euthanasia for psychiatric reasons [ 13 ]. The survey also showed that, although three-quarters are supportive of not excluding the option of euthanasia for this specific patient group [ 14 ], the majority is hesitant to be actively engaged in a euthanasia procedure [ 13 , 14 ]. The literature ascribed the reluctance to the complexity of euthanasia assessment in this patient group, inherently high in professional and emotional demands [ 15 , 16 , 17 , 18 , 19 ]. The complexity was for a large part described in terms of the practical considerations surrounding euthanasia requests and assessment, e.g., whether and when these patients can meet the legal criteria.

There is thus reason to believe that healthcare workers’ overarching ethical considerations influence their attitudes on euthanasia in general and in the context of psychiatry specifically, and their practice. As empirical in-depth studies are lacking, this area is largely understudied. To date, only two recent qualitative studies among Dutch physicians emphasised the value-based reasons for euthanasia decision-making, but did not [ 20 ] or only summarily [ 21 ] scratch the specific context of psychiatry. Another recent qualitative study among Dutch physicians, including psychiatrists, emphasized the value-based reasons for supportive attitudes towards euthanasia, e.g. the value of self-determination, compassion, fairness, and suicide prevention, versus the value-based reasons for not supporting euthanasia, e.g. the mission of medicine of hope and healing [ 22 ]. Furthermore, a recent systematic review described the main ethical challenges surrounding the euthanasia practice in the context of psychiatry [ 23 ]. However, this ethical debate was mainly concentrated on the permissibility and implementation of euthanasia from a practical-clinical point of view, e.g. whether euthanasia in the context of psychiatry should be permitted, and why the legal requirements can (not) be adequately embedded in the field of psychiatric medicine. How practically and juridically relevant these considerations may be, they remain the outcome of ethical values being weighed up, which means that no single consideration can be considered ethically irrelevant, neutral, or value-free. Moreover, the review was based on articles that have been selected in a timeframe in which sound empirical data regarding euthanasia in the context of psychiatry were largely lacking.

Also, the overarching value-based views of other professionals involved in psychiatric euthanasia practice have not yet been studied. This is striking, as a recent Belgian survey study revealed that that half of the psychiatric nurses (53%) are frequently and directly confronted with such euthanasia requests [ 24 ], but in-depth insights into their value-based views are lacking. Furthermore, there are many more formal caregivers, other than psychiatric nurses, involved in euthanasia assessment procedures. End-of-life centres employ e.g., paramedical personnel such as psychologists, psychiatric nurses for intake and registration purposes, and well-trained volunteer personnel such as buddies, entrusted with the task to help these patients to cope with the euthanasia procedure. In addition, rehabilitation-oriented support groups (REAKIRO) were established to help these patients (and their relatives) in walking the tightrope of life and death [ 25 ]. All of these caregivers may also have an unacknowledged but influential role in these euthanasia assessment procedures, and therefore, an interesting perspective to reflect on euthanasia legislation and practice. Gaining insight into healthcare workers’ ethical considerations related to euthanasia in psychiatry will lay bare the ethical foundations underlying current practice and is important to inform and spark further debate around this extremely thorny issue, and to promote sound ethical analysis.

Hence, the purpose of this research is to explore healthcare workers’ ethical considerations regarding euthanasia in general and euthanasia concerning adults suffering predominantly from psychiatric conditions in particular.

Theoretical research framework

Our research was guided by the framework of ‘critical social constructionism’ [ 26 ], providing a nuanced perspective that diverges from the acknowledgment of an objective reality. This approach intricately examines the interplay of personal, social, and societal dimensions within the phenomena under study. It necessitates an acknowledgment of the layered complexities influencing our understanding of phenomena such as euthanasia, a notion supported by both our prior research [ 27 ] and additional studies [ 23 , 28 ].

Our interpretation of the data was informed by social constructionism, which recognizes the role of internalized societal norms in shaping individuals’ perceptions of reality over time. Furthermore, we embraced a contextualist epistemology [ 29 ], acknowledging the contextual influence on knowledge formation among both researchers and participants. This methodological approach aimed to capture diverse lived experiences (e.g., diversity in clinical and euthanasia trajectories) and perspectives, including varied attitudes toward euthanasia based on specific relationships (e.g., professional healthcare worker or volunteer). Consequently, we maintained a reflexive stance regarding the potential impact of our individual experiences and identities on our analyses and interpretations, as elaborated in the Ethical Considerations section.

Study design

The qualitative research design consisted of semi-structured face-to-face interviews with healthcare workers in Flanders and Brussels, Belgium.

Participants

All participants were Dutch-speaking and had at least one concrete experience with euthanasia requests and procedures concerning adults with psychiatric conditions in the period 2016–2020, either as professional or volunteer healthcare workers. We adopted a broad recruitment approach, with a particular focus on all healthcare providers directly involved in medical practice rather than in managerial or policy-making roles. No further exclusion criteria were employed.

Recruitment and interview procedure

Purposive sampling was used to ensure diversity and heterogeneity in terms of: participants’ affiliation with institutions holding different stances on ‘euthanasia and psychiatry’; being to a different extent confronted with these euthanasia procedures as regards the amount of experiences (sporadically versus regularly); the nature of the experiences (e.g. confronted with or engaged in euthanasia procedures that were still under review or that had been rejected, granted, performed or withdrawn); and their specific role as professional or volunteer healthcare worker.

Participants were recruited via assistance of our contact persons at: (1) the end-of-life consultation centre Vonkel; (2) the Brothers of Charity; (3) the rehabilitation-oriented centre REAKIRO in Louvain; and (4) the Review Belgian Euthanasia Law for psychological suffering (REBEL) group, a group of Belgian physicians (e.g. psychiatrists), therapists (e.g. psychologists) as well as academics who express their concern on euthanasia in the context of psychiatry via the media. Participants were also recruited via a notice on the sites, newsflashes and/or in the online newsletters of LEIF (Life End Information Forum), Recht op Waardig Sterven (the Flemish Right to Die with Dignity Society) and Vlaamse Vereniging voor Psychiatrie (Flemish Psychiatric Association).

Potential participants contacted MV or a study assistant by phone or mail. The patients were then given an information letter and informed consent form that consisted of 2 main parts. All interviews were conducted by MV or a study assistant, who both have experience in conducting interviews on end-of-life topics. Interviews were held at the participant’s location of choice, except for five interviews which were held online via video call by Whereby 14 due to the Covid-19 crisis lockdown regulations. Interviews lasted between 55 min and 2 h, and were audio recorded (the online video interviews were recorded by Whereby’s software and immediately transferred in an mp.3 format).

Measurements

The interview guide (see OSF) contained the following consecutive questions of importance to the present report: (1) What is your personal stance regarding euthanasia as a legalised medical end-of-life option? and (2) What is your personal stance regarding euthanasia in the context of psychiatry?

Data management and analysis

We used a model of sampling-based saturation, namely inductive thematic saturation, that relates to the emergence of new themes (defined as 7 consecutive interviews without new themes) [ 30 ]. We continued to recruit and conduct interviews so that the sample would be heterogenous in terms of socio-demographics, clinical profile, and clinical setting. In particular, our focus was on recruiting individuals with the following profiles: psychologists, male psychiatric nurses and moral consultants/spiritual caregivers employed in residential psychiatric settings ( n  = 5).

All interviews were then transcribed verbatim and de-identified by the interviewers.

We made use of hybrid inductive and deductive coding and theme development by means of a 2-staged process. Stage 1 consisted of an inductive data-driven thematic coding procedure.

We made use of these four phases; (1) identification and coding of all transcripts; (2) the placing of the codes in subthemes, i.e., arguments in favour versus critical concerns; (3) the placing of these subthemes in overarching main themes, i.e., different stakeholders (patient/medicine/society); (4) the comparison and discussion of the findings (with all co-authors). In addition to the inductive approach, we also used a deductive, theory-driven template approach during stage 2. We made use of these four phases; 1) the development of an ethical interpretation framework (see OSF). The framework consists of four key concepts, each involving a multitude of ethical concepts: (a) ethical theories and methodologies, (b) ethical values, (c) basic ethical virtues, and (d) dialogue/decision making ethics; 2) the identification of codes that fit the ethical framework and the theory-driven renaming of these codes; 3) the placing of some of the subthemes in an additional main theme; and 4) the comparison and discussion of the findings (with all co-authors).

Ethical considerations

The research team comprised two experienced clinical psychologists, one specializing in euthanasia within the cancer patient population and the other skilled in conducting interviews on this sensitive topic within the adult psychiatric context. Additionally, two ethicists with expertise in assisted dying, including euthanasia, were part of the team. Some authors also have backgrounds in psychiatric practice, including outpatient and residential settings, while others bring expertise through personal experiences. Furthermore, all contributing authors have personal and/or professional connections with individuals navigating death ideation, offering diverse perspectives on euthanasia. Additionally, some authors hold religious beliefs, while others maintain a more agnostic stance. These perspectives vary depending on the predominant viewpoints adopted—whether that of the patient, a close relation, a clinician, an ethicist, or policy stances. To mitigate potential undue influence on data interpretation, three team assemblies were convened. These sessions served to share firsthand encounters from interviews and their outcomes, fostering reflection and deliberation among team members. This proactive measure was implemented to prevent both personal and professional biases from affecting the interpretation of the data.

The main characteristics of the 30 participants are listed in Table  1 . The sample consisted of 16 physicians, 7 other care professionals (ranging from psychiatric nurses to mobile support teams), and 7 volunteers, all of whom were engaged in one or more euthanasia procedures predominantly based on psychiatric conditions.

The participating physicians held various roles regarding the handling of euthanasia requests:

1 physician refused to discuss the request with the patient on principle grounds.

7 physicians managed the clarification of euthanasia requests from their own patients or referred them to colleagues for further clarification.

10 physicians provided one of the two legally required formal advices or an additional advice on the euthanasia request.

5 physicians performed the act of euthanasia.

3 physicians held a more normative, dissuasive stance against euthanasia in the context of psychiatry but were willing to explore and discuss the euthanasia request with the patient.

The sample further included 14 non-physicians, among them members holding one or more roles:

2 members were part of mobile teams providing psychiatric care and support in the patient’s home setting.

3 were psychiatric nurses working either in a general hospital or in a psychiatric residential setting.

2 were Experts by Experience, individuals with a history of mental distress trained to provide support for individuals new to the euthanasia procedure and/or rehabilitation approaches.

3 were buddies, individuals entrusted with assisting and supporting the patient throughout the euthanasia procedure.

3 were moral consultants/spiritual caregiver, tasked with offering various forms of existential guidance and support to patients considering euthanasia, including religious, moral, and/or other perspectives.

5 were consultants at end-of-life information and/or consultation centers responsible for patient intake.

Participants’ ethical considerations regarding euthanasia, in the broadest context of medicine

As can be seen from the coding structure in Table  2 , we ordered coding categories on the level of 1) the individual patient, 2) the patient’s social inner circle, 3) the (para)medical field, and 4) the society. Note that words used verbatim by the interviewees (often interview fragments instead of quotes, as to better illuminate the complexities and nuances of interviewees’ first-hand lived experiences) from the transcribed interviews are incorporated that provide both additional insightful details and reveal the at times interwoven nature of the analysed codes.”

The level of the individual patient

On the level of the individual patient, the following five ethical considerations were distinguished: (1) autonomy, (2) dignity, (3) quality of life, (4) compassion, and (5) the meaning and transformative value of suffering.

First, Autonomy was a recurrent theme in all the interviews. Some participants expressly valued individual autonomy , and more specifically its following two underpinning characteristics: (1) self-determination in terms of the fundamental right for each individual to direct the course of one’s own life, which also includes ‘taking control over the timing and circumstances of one’s end-of-life’, and (2) freedom of choice , as they strongly believed that individuals are free to choose what meaning and purpose they assign to their lives. According to them, as each individual should be enabled ‘to live according to one’s own value system’, so should the ending of one’s life also be congruent with one’s own value system. Hence, in their opinion, euthanasia should remain ‘one of the many options to die’.

Other participants called this individualistic approach of autonomy ‘unrealistic’ or even ‘delusional’, as it shies away from: (1) the relational account of autonomy, in which a true autonomous decision was seen as the outcome of a decision-making process which is shaped by individual, social and contextual components, and (2) the internalised downside of autonomy, as the feeling underpinning many euthanasia requests, namely ‘not wanting to be a burden to others’ may lead to ‘self-sacrifice’ and ‘the duty to die’ under the false pretence of autonomy. In addition, some pointed to the power of susceptibility and subliminality, as human beings are subliminal creatures whose behaviour is continuously influenced on both a subconscious and even conscious level. Consequently, internalised pressure cannot be excluded when a patient requests euthanasia. One psychiatrist even stated that ‘ there exists no such thing as a free will, as human beings are always manipulated in many areas of human life and functioning’ .

“I believe that that there should still be places in society where you could die without considering euthanasia. While many people today are facing dementia, and you almost must…. Interviewer: Yes. “Yes, like how should I deal with it? Should I exit life before it becomes inevitable dementia or something similar? Because I think that in a neo-liberal society, many people internalize the idea that at some point, it becomes a moral duty to step aside. They feel obliged to eliminate themselves. Self-elimination. In a neo-liberal model, as long as you can keep up and contribute, everything is fine. But if you can’t keep up, well, if you cannot fully exercise autonomy, then… Essentially, you should hold your honour and step aside.” (spiritual caregiver)

Second, participants mentioned euthanasia as an option to die with dignity . For those in favour of the Law, euthanasia is considered (1) a ‘dignified way of dying’ when everything that leads up to death, including individual, medical, and social needs and expectations, is consistent with one’s own sense of integrity, belief-system and lifestyle, and (2) a ‘good death’, when referring to the literal meaning of the concept ‘euthanasia’, namely ‘a soft and gentle passing’. Other participants raised concerns on the reference to euthanasia and dignified dying in the same breath, as if “ other ways of dying are not or less dignified ”.

Third, the value of quality of life underpinned the arguments made in favour of the Law on Euthanasia, as (1) life itself should not be prolonged unnecessarily, (2) meaningless suffering should be prevented, and (3) a good life should pertain to all stages in life, from the very beginning until the very end, which is feasible if quality of dying circumstances can be guaranteed. As one buddy stated: “ Living a full and good life implies dying a good death ”. Other participants made use of this value underpinning their argument against euthanasia, based on (1) the “protect-worthiness” of life itself and (2) the suffering that must be considered an inherent feature of the human condition.

Fourth, and seamlessly fitting with the former value, divergent courses also emerged regarding the aspect of how to deal with suffering . Some participants were in favour of euthanasia out of compassion in terms of (1) bringing a kind of relief to the patient when providing her the prospect of an end to the suffering and (2) ending the suffering once it has become ‘useless and meaningless’ and ‘disclosing the limits of the carrying capacity of the self’. Some participants referred to the insufficient degree of quality of life in some patients and valued euthanasia as sort of ‘ compensation for a life gone wrong’.

Others considered the option of euthanasia as compromising patients’ ability to accept, bear and cope with suffering experiences by offering the opportunity ‘to quickly resign from it’.

Some participants referred to the dynamic features and hence, the potential enriching value of suffering. They believed that one can and must revolt against the perception of pointless suffering, as suffering may offer unique opportunities to achieve personal growth through the realisation of self-actualising tendencies amidst the suffering and though all kinds of hardship and adversity in life. Therefore, the real challenge is to support the sufferer to (re)gain the ability to transform the suffering by means of redefining, accepting, and making sense of it. One psychiatrist referred to the Myth of Sisyphus and stated:

A rock that must be pushed up the mountain, which is terrible, and then Sisyphus lets the rock fall back down, and he must start all over again. And what is the purpose of that suffering? Pushing the rock up? It’s absurd, really, but still. I find it so vital, human, uh, yes. That is something that inspires me enormously and often makes me, well, yes, vitality and suffering, suffering is inherent to being, of course, and one can suffer, of course, that is very serious suffering, terrible suffering. I know that. But well, accept suffering, right? I’m not glorifying suffering, no, I don’t belong to that category. Some Catholics do that; the suffering of Christ, we must… No, not at all. Suffering is inherent to life. Interviewer: It’s just more bearable for some than for others. Interviewee: Then it’s our task to make it more bearable. Yes. (…) Look, that sets a dynamic in motion. By dynamic, I also mean movement. A euthanasia request is often rigid. I am for movement. That’s what Eastern philosophy teaches us too, that everything moves, and we must keep that movement and that the question may change or that people may also discover things. Or indeed, a suffering that is even more exposed, but on which one can then work. There is still much to do, yes, before the ultimate and final act of euthanasia, by a doctor for all sakes, should be considered. (psychiatrist)

The level of the patient’s inner circle

On the level of the social inner circle, the following three ethical considerations were distinguished: (1) involvement, (2) connectedness, and (3) attentiveness.

Some participants stressed that euthanasia can only be a soft and thus ‘good’ way of dying, if the patient’s social inner circle can be involved in the euthanasia procedure and if sufficient support to them can be provided. All participants in favour of the legal framework on euthanasia echoed the importance of the social circle being involved in an early stage of the euthanasia procedure, as the prospect of the end of life may challenge a patient’s ability of staying and feeling connected . If the euthanasia request is to be carried out, it offers a unique opportunity for both the patient and her social inner circle of consciously being present and sharing goodbyes. Other participants considered this reasoning as potentially deceiving, as concern was raised regarding the trap of false assumptions, in terms of words being left unspoken and the bottling up of one’s own needs for the sake of the other.

As the third doctor, I was asked to provide advice about someone, and the [adult child] was present, a charming [adult child]. The [adult child] was also very friendly but didn’t say much. The man explained why he himself wanted euthanasia and so on. To be honest, at first, I thought, “Well, this won’t take long,” because there were many arguments and reports I had received, but as the conversation went on, I started to feel something different. It turned into a very long conversation, during which the [adult child] also had their say. In short, the father believed that he couldn’t burden his children. He was a kind man who knew what he wanted, and his children were inclined to follow his idea, to follow his vision. However, the children thought, “Yes, we are actually going to agree with our father, and we’ll allow it,” but deep down, they still wanted to take good care of him. The father didn’t want them to take care of him, and there were many other things, but after that long conversation with the [adult child] and the father, and everything else, like, “We’ll still celebrate Christmas together,” there was a complete turnaround. The other physicians involved accepted this very well, and they said, “Okay, for us, it wasn’t clear. (physician)

In addition, concern was raised regarding the inner circle’s respect of individual patient autonomy and freedom of choice outweighing their r esponsibility and accountabilit y to take care for one another and to act according to all these subjects’ best interest.

Consequently, divergent discourses on the virtue of attentiveness emerged. Whereas for some, the euthanasia procedure may offer a unique opportunity for both the patient and her relatives to be better prepared for death and for the bereaved to better cope with grief, others pointed to the inner circle’s continued grappling with unresolved feelings and perceived helplessness after such a fast-track to death.

Yes, and sometimes I also see people, family members after such euthanasia, yeah, I’ve experienced it several times. They say things like, “Yes, I supported it, but I didn’t know it would affect me like this,” you know? They try to convince themselves, saying, “It was good, it was good, and I stand behind it.” Yeah, you are hardly allowed to do otherwise, but you feel that inner struggle in them, you know? Like, “Was it really okay?” But you can’t question it because you think, “Poor them,” but you still feel it, like, “How sad, how sad. (psychiatrist)

The level of medicine

The following five ethical considerations were distinguished: (1) professional duties, (2) responsibility to alleviate suffering, (3) subsidiarity, (4) professional integrity, and (5) monologic versus dialogic approaches.

First and as regards professional duties, it was (only) reported by some physicians that the physician’s duty is “ to provide good care, which includes good end-of-life care ”. Hence, physicians are the ones who should have euthanasia “as a tool in their end-of-life toolbox”. Others held a different stance and referred to Hippocrates’ Oath when stating that the physician’s duty is to save life at all costs.

Second, all the participants agreed that clinicians have the responsibility to alleviate the patient’s suffering . Whereas some welcomed the option of euthanasia due to the experienced limits of palliative care, that in some cases is deemed an insufficient response to intractable suffering, others stated that euthanasia is not needed as physicians have proper palliative care in their toolbox to alleviate all kinds and degrees of suffering.

Third and as regards the subsidiarity principle , opinions differed on the use of a palliative filter, i.e., whether a consultation with specialist palliative care units should precede euthanasia.

Fourth and as regards professional integrity , some participants relativized the physicians’ executive autonomy. As one psychiatrist stated “because in the end, we do not decide whether someone might die or not. We only decide whether we want to be of help and assist in it.” All the ones in favour of the current legal framework echoed that as physicians are the ones that have better access to the lethal drugs and the technical expertise to end the patient’s life in more efficacious ways than non-physicians, they should remain entrusted with euthanasia assessment procedures. Others (only physicians) criticized the Belgian legislator for placing too much power in the physicians’ hands so that the latter “ can play for God instead of using their pharmacological and technical know-how to save lives ”.

Fifth, and as regards the decision-making process, most participants valued the ethical principle of shared decision-making between the patient and her physicians, and some even preferred a triadic dialogue in which the patient, her relevant health carers and her social inner circle is involved in euthanasia assessment procedures. For most of them, this type of extended or relational autonomy is considered as best clinical euthanasia practice, especially when death is not foreseeable. According to some non-physicians, a strict dyadic patient-physician approach is to be preferred when death is reasonably foreseeable in a patient with sufficient mental competence. In this event, no intermediary should be tolerated as the medical secret is considered ‘sacred’. One participant elaborated further on this strict dyadic approach and said:

“ But actually, in my opinion, the request for euthanasia is something between two people. So…. Interviewer: The singular dialogue? “So, a relationship between the patient and the doctor, yes. That’s what I think. And I do understand that the legislation exists, primarily to protect the doctor against misuse or accusations, because euthanasia used to happen before too, but in secret. But for me as a doctor, it would be enough if a patient whom I’ve known for years, followed for years, maybe 20 years, 30 years, 40 years, and who is terminally ill, asks me in private, ‘I want it.’ For me, it doesn’t need to be more than that for me to say, ‘yes.’ So, there’s no need for a whole set of legislation, except of course to protect myself, maybe from the heirs who might have a different idea about it, yes, but I find it beautiful. And they say, you know, our legislation is such that you can write your euthanasia request on the back of a beer coaster and that’s enough, you know? But how it used to be, euthanasia happened just as well, that’s what I heard from my older colleagues. But it was done in private. Actually, that is the most beautiful sign of trust between a doctor and a patient. ” (Physician and consultant)

Others, all physicians without a favourable stance on euthanasia, considered medical paternalism morally justified in the end-of-life context, as (1) physicians have more intimate knowledge of the patient and are thus best placed to act in the patient’s best interests, (2) only the independent evaluation from well-trained and experienced physicians may rule out external or internalized pressure from the patient’s social inner circle, and (3) some patients may show impaired decision-making capacity when confronted with the end of life.

The level of society

As regards the origins and impact of euthanasia legislation on the level of society, the following four ethical themes emerged: (1) protection, (2) dignified dying, (3) solidarity, and (4) distributive justice.

First and as regards protection , some participants valued the existence of a legal framework for an ‘underground’ practice before 2002. According to them, this framework was highly needed to protect the patient against malicious practices and the physician against being charged for murder when ensuring herself that all the legal requirements are met.

So, I believe that it should be well-regulated in a state. In a country, it should be well-regulated. You can either be in favour of it, have reservations, or question it, but when it happens and many people want it or think it’s okay, then it should be regulated. And those, like me, who may be against it, have doubts about it, or wonder, “Is this really necessary?” I would say, or “Does it align with our purpose?” the existential comments that you can make about it, we must accept it because it would be terrible if it, well, it would be even worse if it happened in the underground, like before those laws were established, that’s, yeah. So, I think the laws should exist. Whether I would have made those laws is a different question, or whether I would vote for the parties in parliament that, you know, that support it, that’s another question, but apparently, here in North-western Europe, the need for those practices exists, and it should be regulated properly. And yes, it shouldn’t be left to amateurs or something like that, that’s not the intention. Yes, well, it serves to protect, both in terms of health and to ensure that it doesn’t become a business, of course. I’d prefer it to be integrated into the healthcare system rather than turning it into a profit-driven and exploitative affair for some others. So, that’s…. (psychiatric nurse)

Critical concerns were raised on the lack of protection of the most vulnerable people, i.e., the mentally ill and the elderly. Some of them referred to the amended Law in 2014, that also allowed minors to die by means of euthanasia – be it under more strict circumstances, inter alia, when based on unbearable physical suffering resulting from a medically terminal condition – and feared that the Law will be amended again, so it would no longer exclude the people suffering from dementia or for groups without serious incurable illness, e.g., the elderly with a perceived ‘completed life’.

Second, a major societal shift in thoughts regarding what constitutes dignified dying was reported. For some, the Law on Euthanasia reflects a nascent movement of death revivalism, in terms of people reclaiming control over their dying process. In this respect, euthanasia is deemed a counterreaction to the former dominant paternalistic attitude in Western society to systematically marginalise conversations on death and dying, e.g., due to the mechanisms of denial, avoidance, and postponement, and with the line between life and death increasingly held in physician’s hands, which has left many people ill-equipped to deal with dying and death. The current broad public support for euthanasia is seen as the individual patient taking back the decision-making process of dying and death in her own hands. They further considered euthanasia as a logical consequence of living an artificially prolonged life due to e.g., advances in medicine, that have not necessarily enhanced the quality of life.

“ One thing I also consider is that a part of our lives is artificially prolonged, you know. We don’t live longer because we are healthier, but because we have good pills or better surgical procedures, so we can afford to buy our health. So that part of life is still valuable to me, it’s not less valuable, but it’s artificially extended. So, I think we should keep that in mind, that we can prolong something artificially and maybe even go beyond a point where it no longer works. Interviewer: Beyond the expiration date? That’s what I was looking for (laughs). So, in that sense, I believe we should keep in mind that we can artificially extend something and then maybe, even if it’s just that artificial part, stop or be allowed to stop when the person no longer wants to, I think that makes perfect sense. ” (psychiatrist)

Others provided arguments against the increased death revivalism, referring to euthanasia as a ‘fast-track to death’ resulting in ‘the trivialisation of death’ in the face of formerly known and experienced Art of Dying. For instance, the current societal tendency to avoid suffering and the fear of dying may lead to patients (too quickly) resigning from a slow track to death, in which there is time to e.g., hold a wake.

But I won’t just grab a syringe, fill it up, and administer a lethal injection, you know? I follow the symptoms. And if they become uncomfortable, then I’ll increase the dosage so they can rest peacefully and not have to suffer. That’s what I call a dignified death. And if the family can be present, sometimes it takes a while for them to arrive, and they’ll say, “Come on, even a dog is not allowed to suffer that long.” Meanwhile, the person is just lying peacefully. But that too. Everything should, even that, should progress, and there isn’t much time left for vigil and, yes, I don’t want to romanticize it, but sometimes you see so much happening between families. There’re all kinds of things happening in those rooms, with the family, reconciliations being made. Memories being shared. “Oh, I didn’t know that about our father.“, an aunt walking in and telling a story. Well, so much still happens. I don’t want to romanticize it, but to say that all that time is useless, that’s not true either. And at the farewell, there’s always, the time, you think there’s time for it, but people are still taken aback when an infusion is given, that it can happen within a minute, even if they’re behind it and have been informed beforehand. Just a minute… and it’s done. The banality of death, it’s almost like that. (psychiatrist)

These and other participants also criticised ‘the romanticised image of euthanasia’, that masks the economics of the death system, taking financial advantage of ‘patients not wanting to be a burden to society’.

Third and consequently, divergent discourses on the value of solidarity emerged. For some, decades of civic engagement pointed to the need of death revivalism and patient empowerment, that resulted in the current legal framework. Others strongly criticised the lack of solidarity underpinning the legal framework on the following three counts: 1) the emphasis on patient autonomy is deemed a ’societal negligence in disguise’, as citizens are no longer urged to take care of others, 2) equating autonomy and dignity in euthanasia debates leads to the trap of viewing the ill or the elderly as having ‘undignified’ lives, and 3) wealth over health has become the credo of the current neoliberal society, as the Law on Euthanasia discourages further investments in health care but settles on the ‘commodification’ of health care.

“ I believe that we should take care of each other and especially care for the most vulnerable in our society. We shouldn’t just leave them to fend for themselves. I don’t think the motto should be all about autonomy, autonomy, and then the flip side, saying, “figure it out on your own.” That’s not acceptable. We have a responsibility to take care of each other. We are meant to care for one another. In biblical terms, we are each other’s keeper, right? “Am I my brother’s keeper?” Yes, I am my brother’s keeper. I must take care of each other, take care of others. So, I think in the long term, speaking maybe 100 years from now, people might say, “Sorry, that was a real mistake in the way they approached things.” I don’t know, but that’s looking at it from a meta-level, as historians call it, “longue durée,” and combining it with a neoliberal model, right? Neoliberalism and euthanasia thinking, it would be interesting to do a doctoral thesis on how they fit together perfectly. How they fit together perfectly… They are no longer patients, they are no longer clients, and I also don’t like the word ‘clients.’ They have become ‘users’. Sorry, but that’s our Dutch translation of the English word ‘consumers’ right? It’s like buying Dash detergent or a car; you buy care, just like the Personal Budget for people with disabilities. You buy your care, sorry, this goes against the very essence of what care fundamentally is. Care is a relationship between people; it’s not something you buy. It’s not something you say, “It’s a contract, and I want that.” It doesn’t work like that. [raising voice] The burden is on society. [end of raising voice] And when the money runs out, you have nothing left. If you can’t buy it, then it doesn’t come. “Here’s your little package,” that’s how it’s translated, and it’s always a hidden cost-cutting operation, let’s be very honest about it, a nice story, but it’s always a hidden cost-saving measure. I see right through that story, but well, big stories are always told, and they are always about saving money. [raising voice] It doesn’t bring anything, right? [end of raising voice] People’s self-reliance, they must stay at home, etc. How many people would benefit from going to a care centre, not at the end of their lives, but just because they feel totally lonely at home, but they can’t get in because nobody wants them there, as they don’t bring any profit. ” (spiritual caregiver)

Fourth, critical concerns were expressed concerning the lack of (distributive) justice due to the many existing misperceptions and misconceptions regarding medical end-of-life options that need to be uncovered. For instance, many people would be unaware of euthanasia and palliative sedation can both be dignified ways of dying, with euthanasia functioning as a fast-track and palliative sedation functioning as slow track to death. Also, the evolution of death literacy was contested: there was a sense that patients did not become more death literate, as many of them have insufficient knowledge of the content of the many end-of-life documents in circulation.

Yeah, I mean, you see, and I hear many people saying, “My papers are in order.” I won’t say every day, but I hear it almost every day, “My papers are in order.” That’s also something. It’s an illusion of control, right? Because what papers are they talking about? “My papers are in order.” When you ask them about it, they themselves don’t really know what that means, some kind of ‘living will’, ‘an advance care plan’, but yeah, with all… A living will or advance care plan is not that simple either, and then they think, “Oh, if I get dementia and I don’t recognize anyone anymore, they will give me an injection.” Ah yes, but then we are in a different domain, and that’s a whole other… But yeah, people are not well-informed, I find. They have totally wrong ideas and sometimes fear the wrong things, don’t know what is possible and what is not, and they also let themselves believe all kinds of things. Well, there are many misconceptions out there. (psychiatrist)

Participants’ ethical considerations regarding the additional procedural criteria for people with a non-terminal illness

As can be seen from the coding structure in Table  3 , participants made use of the principle justice to motivate their stance on additional (procedural) criteria that people with a non-terminal illness must meet before euthanasia can be carried out, in comparison with people with terminal illness. Those in favour of the additional procedural criteria referred to the differences between the terminally ill and the non-terminally ill regarding the aspect of content (i.e., the difference between general life expectancy and healthy life expectancy) and the aspect of time (i.e., the probability verging on certainty concerning the terminally ill versus the rough estimation concerning the non-terminally ill). Some of them also referred to the legal proceedings and stated that the Law was meant only for people with terminal illnesses to die by means of euthanasia. Others were of the opinion that it concerns only an arbitrary difference due to 1) the vagueness of the concept ‘naturally foreseeable’, i.e., suffering from a terminal illness, and the subjectivity of the calculated course and prognosis of e.g., degenerative somatic illnesses and dementia. A few participants said that this is beside the question, as one’s individual carrying capacity trumps the course and prognosis of an illness.

Participants’ ethical considerations regarding adults with psychiatric conditions

As can be seen from the coding structure in Table  4 , when asked about participants’ stances on euthanasia in the context of psychiatry, we distinguished value-based themes at the level of (1) the patient, (2) the field of psychiatry, and (3) society in general.

The level of the patient

Justice was the main value-based principle that emerged at the level of the patient. Participants in favour of not legally amending additional procedural criteria in the context of psychiatry stated that every patient with a non-terminal illness should receive equal end-of-life care options. The main counterargument given concerned the differences in patient profile, as some questioned whether the mentally ill can meet the legal criteria or stated that extreme caution is needed and thus additional criteria are in place due to the factor of e.g., ambiguity, impulsivity, and manipulation in the mentally ill.

“I find, the way the procedure is conducted for psychiatric suffering, I find it only natural that they handle it more cautiously because it’s indeed less… It’s not so easy to determine everything, is there really no other option left? And then I understand somewhere that time must be taken to investigate all of that. Because some of these people can be very impulsive, and that impulsivity needs to be addressed somewhere, of course. You also have people who can use their setbacks in the sense of, ‘I’ve been through all that, so I deserve euthanasia.’ And those are the people you need to single out because that’s just… I think those are also people who, with the necessary guidance, can still get out of it. Do you understand? It’s a form of self-pity, in a way. I think there might be resilience there, but they haven’t tapped into it themselves yet; it’s a kind of deflection or something. People with a history of, who say ‘I’ve experienced this and that, so I don’t need it anymore, just give me euthanasia, I deserve that. I’ve been through all that.’ While maybe, if they see, that’s still worth something to me, who knows, maybe that can still happen. They’re people who give up a little too quickly.” (Moral consultant)

Regarding the field of medicine, the following four value-based considerations emerged: (1) justice, (2) responsiveness to suffering, (3) protection, and (4) proportionality.

First, and as regards the principle of justice , participants in favour of equal procedural criteria for all non-terminally ill pointed to the indissociable unity of soma and psyche. A few physicians went one step further and reported that some psychiatric conditions can be considered terminal, e.g., suicidality, or predominantly of somatic nature, e.g., anorexia. The main counterarguments in this respect were (1) the firm belief in the inexistence of irremediableness in psychiatry (only mentioned by some physicians) or (2) that more caution is needed due to the higher level of subjectivity in terms of diagnostics, prognosis, and outcome.

Second, arguments against the distinction between the somatically versus the mentally ill were based on the attitude of responsiveness to the extreme extent and duration of mental suffering that can also render the mentally ill in a medically futile situation and the field of psychiatry empty-handed.

And many of the psychiatric patients I see suffer more than the average ALS patient who has to endure it for three years. In my experience, we’re less advanced in psychiatry compared to most other medical fields. You can easily say “we don’t know” in other areas of medicine and people will understand, but when it comes to psychiatric conditions, it’s different. Doctors might admit “it’s not working” or “there’s no trust,” and they might refer patients elsewhere or even refuse further appointments. I’ve even told a judge during a forced admission, “There’s simply no treatment available.” Yes, sometimes it’s just over and society must accept that there’s no solution. I’m not saying euthanasia is the solution for everyone, but I think it can be an option for some people. (Psychiatrist)

Other participants were not blind to the deep suffering, but strongly believed in the ground principle and core strength of psychiatry, namely the beneficial effect of hope. In addition, they pointed to the differences in the nature and course of somatic versus psychiatric illnesses when stating that considerably more time is needed in psychiatry, with inclusion of the therapeutic effect of hope to become effective.

“And I also believe that collectively, within psychiatry, we can and must provide additional support to endure profound despair. So, even in the face of seemingly endless hopelessness, we must maintain hope, look towards the future with trust, and continuously offer encouragement to those who feel hopeless. Our unwavering optimism and support convey the message that together, we can overcome. Because individuals who suffer from severe mental illness are treatable, I consider myself to be a genuinely optimistic psychiatrist. I have witnessed individuals who have harbored feelings of hopelessness and despair for extended periods, sometimes even decades, undergo profound transformations and experience significant improvement, and in some cases, complete recovery.” (Psychiatrist)

Third, participants in favour of the current legal framework reported that allowing euthanasia for the mentally ill was needed in the light of protection , as it might protect the patient against brutal suicides and also against therapeutic tenacity that more often occurs in psychiatry. Other participants in favour of, as well as participants against the current framework held a different stance on the following two counts: (1) allowing euthanasia conflicts with the aim of psychiatry to prevent suicide at all costs, and (2) the mentally ill are insufficiently protected by the Law as there are insufficient built-in safeguards against therapeutic negligence.

But usually with a psychiatric condition, death isn’t imminent. That’s the tricky part, you know? How many suicides do we have here? But anyway, I have an issue with that, using euthanasia as a kind of antidote against, well, against suicide, that’s a completely different matter. But death and psychiatry, why do we have all those government programs against suicide then? Isn’t that dying as a result of a psychiatric condition? (Psychiatrist, supportive of maintaining euthanasia option in psychiatric settings)

Fourth and as regards proportionality , a few participants with a normative stance against euthanasia in the context of psychiatry argued that psychiatric patients may not be allowed to die by means of euthanasia for as long as the field of psychiatry is under-resourced. They pointed to e.g., the lack of sufficient crisis shelters with a 24/7 availability and the lack of palliative approaches in the field of psychiatry. Instead of allowing euthanasia, they argue ‘to jolt the Belgian government’s conscience on mental health policies’. As a revolution to defeat the built-up inequalities in the field of medicine and knowing that palliative and rehabilitation initiatives in psychiatry require time.

“I oppose euthanasia in psychiatry. Compared to somatic medicine, psychiatry lags behind by 50 years. While physical pain can be managed with medication, there’s insufficient research on treatments for psychological suffering. Promising options like psilocybin and ketamine show potential in easing existential mental struggles. Magnetic stimulation can also alleviate depression, yet access remains limited. Unfortunately, these treatments are underused and under-researched. Many patients aren’t informed about these alternatives to euthanasia. It’s frustrating to see reluctance in exploring these options, especially when they offer hope to long-suffering patients. Utilizing these methods in psychiatric settings carries no risk of addiction. However, current restrictions impede access to these treatments, depriving patients of viable alternatives.” (Shortened excerpt from an interview with a psychiatrist)

When taking a societal perspective, no new arguments emerged from the respondents strongly in favour of the current euthanasia legislation, other than the main value of justice described in the subsection above. According to some, the current Law on Euthanasia busts some myths on the malleability of life and medical omnipotence, and even on psychiatric illnesses as a ‘Western phenomenon’, with e.g., depression and suicidality as a consequence of material wealth instead of a neurologic issue in the brain (only reported by some non-physicians).

There are quite a few people who consider the whole issue of the unbearable nature of psychological suffering a luxury problem, you know? They say something like, “Yeah, where are the suicide rates, to put it in equivalent terms, the lowest in the world? In Africa, because they obviously don’t have the luxury to concern themselves with that. They are already happy if they have a potato on their plate every day.” This is a viewpoint held by many, right? They call it a luxury problem, a modern, typical Western luxury problem. And perhaps there is some truth to it, right? But there are other causes of mortality there, which are much higher, such as child mortality, for example. (non-physician)

Counterarguments were also given and pointed to the value of (distributive) Justice. First, euthanasia was considered as ‘a logical but perverse consequence of systemic societal inequities’ on the one hand and the ‘further evolution towards the commodification or commercialisation of health care in individualised Western societies’ on the other. This would then lead to another vicious circle, with a rapidly growing ‘perception of vulnerable patient groups as irremediable’ and hence less likely to receive potentially beneficial treatment or other interventions. Some took a more radical stance against euthanasia in psychiatry, as they were convinced that euthanasia is nothing but ‘a perverse means to cover societal failures’. In addition, some participants with permissive stances on euthanasia in the context of psychiatry pointed to gender disparities in euthanasia requestors. This was based on the evidence that in the context of psychiatry, many more females request and die by means of euthanasia than males, and proportionally more female patient suffering from psychiatric disorders request and die by means of euthanasia compared to their fellow peers suffering from life-limiting or predominantly somatic conditions.

Finally, some respondents said that they could understand and, in some cases, even support euthanasia in some individual cases, but felt uncomfortable with its impact on the societal level. They pointed to the vicious circle of stigma and self-stigma that may impede the mentally ill to fully participate in societal encounters. In the long run, this type of societal disability may lead to vulnerable patients no longer wanting to perceive themselves a burden to society or to remain ‘socially dead’.

While considering their ethical perspectives towards euthanasia, participants weigh up various values related to and intertwining with the following levels: (1) the patient, (2) the patient’s inner circle, (3) the field of medicine, and (4) society in general. Overall, the participants shared an amalgam of ethical values on each of these four levels, regardless of their stance on euthanasia. It was mainly the interpretation of some values, the emphasis they placed on the key components underpinning each value and the importance they attach to each of the four levels, that determined their stance towards euthanasia. It was uncommon for different ethical values to be explicitly mentioned, which could distinguish distinct stances for or against euthanasia.

As regards euthanasia in the context of psychiatry, the focus has primarily been on arguments for and against euthanasia [ 23 ]. However, our study takes a more comprehensive approach, exploring the issue from a wider range of perspectives. This approach allowed us to uncover more complex insights that may have been overlooked if we had only considered it as a black-and-white issue.

Both the systematic review of Nicolini et al. [ 23 ] and our study emphasized fundamental ethical domains such as autonomy, professional duties, and the broader implications of euthanasia on mental healthcare. While our findings aligned with those of the systematic review, our inquiry delved deeper into psychiatry-specific considerations, including the influence of sudden impulses and feelings of hopelessness. This underscores the importance of healthcare professionals carefully assessing the timing and contextual aspects of such decisions within psychiatric contexts, ensuring individuals receive timely and tailored support and interventions.

Furthermore, our study extended beyond the boundaries of medical discourse, addressing broader societal ramifications. Participants engaged in discussions about ‘social death,’ a phenomenon that describes the marginalization of individuals despite their physical existence. This discussion highlighted entrenched structural inequities and societal attitudes perpetuating social alienation, particularly affecting marginalized demographics, including individuals grappling with mental health issues. Advocating for societal inclusivity and supportive measures, our study strongly emphasized the need to foster a sense of unity and respect for everyone’s worth, regardless of their circumstances.

Interpretation of the main findings

We make explicit and discuss the values corresponding to the four classical principles of biomedical ethics, in particular beneficence, non-maleficence, respect for autonomy and justice [ 31 ]. We place these values in the context of different ethical approaches, such as religious, professional, emancipatory, social, societal, and virtue-oriented approaches (see the ethical interpretation framework in OSF).

In the discussion section, therefore, the following main values and virtues are addressed: (1) the values of beneficence and non-maleficence in a religious perspective, (2) those same values in the professional context, (3) the value of autonomy in the contemporary emancipation paradigm, (4) the virtue of compassion stemming from virtue ethics theory, (5) the value of quality care in a social approach, and (6) the value of justice in societal policy contexts.

Beneficence and non-maleficence: religious perspective

In the realm of euthanasia debates, the interplay of religious beliefs and the values of ‘beneficence’ (the act of doing good) and ‘non-maleficence’ (do no harm) has emerged as a pivotal point of contention, often giving rise to divergent perspectives on this complex ethical issue [ 32 , 33 ]. Some religious traditions staunchly oppose medical end-of-life decisions, including euthanasia and abortion, viewing them as morally wrong and as disruptive to the natural order of life and death. The principle of ‘sanctity of life’ forms the bedrock of their belief system, underscoring the significance they attach to preserving life at all costs, as an embodiment of beneficence [ 34 , 35 ]. Conversely, those who argue for the ethical consideration of euthanasia emphasize the concept of beneficence in alleviating suffering and granting autonomy to individuals in their final moments. However, intriguingly, our examination of the topic has revealed a nuanced relationship between religious beliefs and attitudes toward euthanasia. While some individuals in our sample expressed strong religious convictions ( n  = 5) and even considered themselves as practicing Catholics, they did not necessarily adopt a firm normative stance against euthanasia, signifying a complex balancing of beneficence and possible maleficence within their belief system. Conversely, certain participants who held steadfastly against euthanasia ( n  = 3) did not identify with any religious belief system, yet their position was firmly grounded in their perception of potential maleficence associated with medical intervention in life and death decisions. This observation aligns with recent studies highlighting the intricate and multifaceted nature of religiosity, where individuals within various religious frameworks may hold diverse beliefs and values surrounding beneficence and non-maleficence [ 36 , 37 ]. Moreover, it underscores the powerful influence of societal culture on shaping personal perspectives on euthanasia, and how these views are entwined with the values of beneficence and non-maleficence [ 36 , 37 ].

Beneficence and non-maleficence: professional values

Second, a profound division arises between proponents and opponents, particularly in the field of medicine, where interpretations of the Oath of Hippocrates play a central role. At its core, the Oath emphasizes the deontological values of beneficence and non-maleficence, as physicians are bound by a prohibition against administering a deadly drug to ‘anyone,’ even at their explicit request, highlighting the reverence for the sanctity of life inherent in medical practice. This interpretation has led some to perceive active euthanasia as contrary to these sacred principles of preserving life. The notion of beneficence, understood as promoting the well-being of patients, appears to be in tension with the act of intentionally ending a life. Critics argue that euthanasia undermines the fundamental duty of physicians to protect and preserve life. Additionally, the principle of ‘non-maleficence,’ which entails not harming the patient or their life, is seen by some as being in accordance with the ‘sanctity of life’. However, the Oath also recognizes the significance of alleviating relentless suffering, opening the door to a nuanced debate on how these timeless principles align with the modern concept of euthanasia. As the discourse unfolds, perspectives emerge, with some viewing euthanasia as a compassionate form of care, that respects the autonomy and dignity of patients facing terminal illness or unbearable suffering. Advocates argue that euthanasia can be an act of beneficence, providing relief from pain and allowing individuals to die with dignity and control over their own fate. On the other hand, opponents of euthanasia steadfastly uphold the sanctity of life principle, viewing it as an ethical imperative that must not be compromised. They argue that intentionally ending a life, even in the context of relieving suffering, undermines the fundamental values of medical ethics and the intrinsic worth of every human life. For these individuals, euthanasia represents a profound ethical dilemma that conflicts with the near sanctity of medical ethics and the value of preserving life [ 38 , 39 , 40 ].

Autonomy: contemporary emancipation paradigm

The principle of autonomy emerges as one of the most prominent and contentious values in our contemporary emancipation paradigm. Autonomy, grounded in the belief in individual self-governance, is often cited as a foundational ethical principle in euthanasia legislation, emphasizing the significance of an individual’s capacity to make choices aligned with their own personal values and desires [ 31 ]. However, the discussion on autonomy extends beyond pure individualism, with considerations for relational autonomy, recognizing that individuals are not isolated entities but are shaped by their relationships, communities, and broader societal structures [ 41 ]. Within the context of euthanasia, the complexities of autonomy become evident as participants in the debate strived to find a delicate balance. On one hand, they stress the importance of respecting a patient’s individual autonomy in end-of-life decisions, ensuring that their choices are honoured and upheld. Simultaneously, they acknowledge the necessity of accounting for the patient’s social context and broader community when considering euthanasia as a compassionate option. Nevertheless, concerns are raised by some about the potential risks posed by euthanasia legislation, particularly for the most vulnerable individuals, such as the elderly and the mentally ill. These concerns centre on the negative consequences that may arise when individual autonomy is exercised without consideration for others or for societal well-being, and the concept of “social death,” which refers to the marginalization and exclusion of individuals from social relationships and networks due to illness or disability [ 42 , 43 ].

Amidst these complexities, the ethical value of autonomy stands as a paramount consideration. However, its application necessitates thoughtful consideration and balance with other values, including justice, equality, and societal responsibility. Recent reflections on “relational autonomy” have prompted critical evaluations of the idea of pure autonomy, emphasizing the need to delve deeper into the micro, meso, and macro levels that underpin autonomy and address potential conflicts between individual and relational autonomy [ 44 ]. Further, it highlights the imperative to take the broader societal context into account when grappling with the ethical challenges associated with euthanasia [ 45 ].

Compassion: virtue ethics

Our study confirms that while the value of autonomy holds importance, it is not the sole determinant in the ethical considerations surrounding euthanasia [ 46 ]. In this complex discourse, numerous other ethical values and virtues come to the fore, including the significance of compassion towards suffering individuals and the imperative of alleviating their distress. Notably, compassion is not merely a singular principle, but rather a profound ground attitude or virtue that motivates individuals to empathize with the pain of others and take actions to provide relief.

As revealed in our research, participants who opposed euthanasia did not invoke religious frameworks; instead, they explored diverse philosophical approaches to comprehend suffering and compassion. Among these, non-Western philosophies emphasized embracing suffering as an intrinsic aspect of life, acknowledging the impermanence of all things, including suffering. Additionally, the existentialist perspective of Albert Camus underscored suffering’s innate connection to human existence, leading to deeper self-understanding and comprehension of the world.

These philosophical viewpoints find relevance in the realm of ethics as well. Virtue ethics, in particular, highlights the significance of cultivating virtues such as courage and resilience, while narrative ethics emphasizes storytelling as a means to gain profound insight and reflection on experiences of suffering [ 47 , 48 ]. Such narratives foster empathy and create a shared sense of experience and community.

Our results show that, for some, suffering may hold positive value in various ways. The nature and intensity of suffering, alongside an individual’s values and virtues, beliefs, and coping capacity, significantly influence the ethics of euthanasia decision-making. An intricate approach that recognizes the multifaceted impacts of suffering becomes essential, acknowledging that various factors could potentially influence the experience of suffering as well as the interpretation of the consequences of the suffering experience. It’s possible that this approach doesn’t solely depend on the quantity of suffering or even its nature. Instead, it could be related to the delicate balance between one’s ability to endure suffering, the burden it places on them, and the (ir)remediableness of this burden, which can vary greatly among individuals as well as it might change over time. Such an approach aims to alleviate relentless suffering and, in certain cases, relieve unnecessary and enduring distress without consistently imposing interpretations upon it. Thus, acknowledging that, experiences of suffering are inherent to life and might act as drivers for personal development, fostering resilience, empathy, and a deeper apprehension of life’s essence, while it also might represent something irremediable, underscores the significance of a broader meaning of the concept of compassion as guiding principle in euthanasia discussions. These discussions further extend to the recognition of the dynamic trajectory inherent to the burden of suffering, as well as its potential for temporal evolution within the individual experiences of the afflicted. Such recognition not only fosters a more intricate understanding of the complex interplay between suffering and resilience but also highlights the acknowledgment that there may be moments when suffering becomes unendurable, surpassing the individual’s capacity to cope. This dimension introduces a layer of intricacy to the ethical considerations inherent in these discussions, thus necessitating a nuanced approach that contemplates the potentialities as well as the constraints of human endurance and the associated ethical ramifications.

Quality care: social approach

Examining euthanasia debates from a sociological perspective sheds light on the influence of societal inequalities in healthcare access and quality on the practice of euthanasia, and how it can shape personal, relational, and societal values, leading to the normalization or culturalization of euthanasia [ 49 ]. A noteworthy finding in this context is the contrasting perspectives on the evolving process of dying, transitioning from being perceived as in God’s hands to a more medical realm, where proponents of euthanasia view medicine as a catalyst for granting individuals greater control over the timing, manner, and circumstances of their own deaths. They envision the opportunity to be surrounded by loved ones and maintain consciousness while embracing the option of euthanasia, which they believe improves the quality of life at the end.

Proponents also emphasize additional benefits, such as enhanced transparency and regulation, ensuring ethical conduct through regulatory measures. They express concerns about a cultural environment where certain physicians adopt paternalistic attitudes and resist accepting death, prioritizing the extension of life as a moral imperative. In contrast, critical voices argue that death and dying have become increasingly medicalized, leading to their institutionalization. Some critics further contend that this medicalization has devalued the dying process and commodified life itself, leading patients, and families to increasingly rely on medical interventions at life’s end.

Moreover, as shared by some of the interviewees, the growing acceptance of medical assistance in dying may raise concerns. It’s conceivable that this evolving attitude could contribute to a perception of death undergoing a shift in seriousness, resulting in decisions about one’s life conclusion being made with less comprehensive thought and insufficient reflection. Consequently, this scenario could potentially lead individuals who are more susceptible to experiencing feelings of life’s insignificance, weariness, or sense of being ‘through with life’, to lean towards considering euthanasia. However, this inclination might also be driven by a lack of sufficient access to the necessary, long-term quality mental health care that would otherwise facilitate the pursuit of a life imbued with adequate significance, comfort, and dignity, achievable through appropriate (mental) healthcare.

Earlier research indicates that Belgium’s psychiatric care system has been grappling with underfunding and fragmentation, leading to individuals falling through the gaps in the mental health safety net [ 50 ]. One critical aspect is, e.g., the inadequate investment in long-term, intensive care, which is precisely the kind of support that individuals grappling with such existential questions may require.

Hence, in the context of euthanasia debates, the value of quality care emerges, encompassing the principle of beneficence, which emphasizes the obligation to provide good care and enhance the overall well-being of individuals. Ethical considerations go beyond the individual’s right to autonomy, extending to societal factors that influence healthcare practices and attitudes towards euthanasia. Addressing the impact of healthcare disparities and the medicalization of dying becomes imperative to ensure ethical and compassionate decision-making that upholds the true value of quality care and respect for human dignity.

Justice: societal policy contexts

In the context of euthanasia in somatic versus psychiatric medicine, ethical considerations regarding euthanasia often revolve around the fundamental value of justice [ 23 , 51 , 52 ]. Some respondents in our study emphasized the need for parity between somatic and psychiatric illnesses, recognizing that there should be no distinction between patients suffering from either. They argued that upholding the principle of justice demands equal treatment and recognition of the suffering experienced by individuals with psychiatric illnesses.

However, for others, achieving justice requires acknowledging and addressing the unique challenges faced by patients predominantly suffering from psychiatric illnesses. A comprehensive and integrated healthcare approach is proposed, where mental health is regarded as an integral part of overall health. This approach involves allocating the same level of attention and resources to psychiatric medicine as given to somatic illnesses, aiming to combat stigma and discrimination towards individuals with psychiatric conditions. Equitable treatment during life and at the end of life becomes the focus.

Yet, the Belgian context of psychiatry presents significant challenges. The field is characterized by underfunding and fragmented care, particularly for individuals with longstanding and complex psychiatric problems [ 53 ]. Additionally, the end-of-life care for psychiatric patients is still underdeveloped, and palliative psychiatry is in its early stages, lacking a uniformly agreed-upon definition or clear implementation guidelines [ 54 ]. In response, Belgium is exploring the “Oyster Care” model, designed to provide flexible, personalized care for individuals with severe and persistent mental illness who may be at risk of neglect or overburdened by psychiatric services [ 55 ]. This model aims to create a safe “exoskeleton” or supportive environment for patients, recognizing that recovery, reintegration, and resocialization might not be attainable for everyone with certain psychiatric conditions [ 55 ].

However, the integration of Oyster Care in today’s psychiatric practice is still limited and requires further development. Emphasizing the value of justice calls for continued efforts to enhance and refine psychiatric care, ensuring that individuals with psychiatric illnesses receive equitable treatment throughout their lives, including end-of-life care decisions [ 55 , 56 ].

Implications for future research, policy, and practice

In terms of policy and practice, our findings indicate that the discourse surrounding euthanasia extends beyond legal or medical considerations and encompasses fundamental ethical values that underpin our society. These values may not always be aligned and can create ethical dilemmas that are challenging to address. A value-centred approach to the euthanasia debate necessitates a constructive ethical dialogue among various actors involved, including patients, healthcare practitioners, and the wider community. This conversation should strive to comprehend the diverse values involved and endeavour to achieve a balance between these values. Additionally, ethical dialogue might encourage individuals to reflect on their own assumptions and beliefs, leading to more informed and thoughtful decision-making on ethical and moral issues. Ultimately, ethical dialogue can promote a more just and equitable society that prioritizes empathy, understanding, and mutual respect.

It is also crucial to acknowledge that patients with somatic illnesses and those with psychiatric illnesses may have different needs and expectations regarding the end of life. Hence, end-of life healthcare must be sensitive to the unique needs of each group. This recognition of differences does not justify unequal treatment or discrimination based on the type of illness. Instead, it involves addressing the different needs and expectations of each patient group while ensuring equitable and high-quality care for all.

As regards research, most articles on euthanasia legislation to date placed the emphasis on what other countries and states can learn from the Belgian and Dutch euthanasia practice. In addition, what can be learned is mainly restricted to the evidence and reflections on factual issues from a global practical-clinical perspective. Consequently, one of the main ethical, clinical, and societal issues remains unrequited, namely the impact of legislation and its consequences on an intrapersonal, interpersonal, medical, social, and societal level. Although cultural diversity is recently put high on the research agenda concerning general health care and mental health care, it is largely understudied in the context of end-of-life decisions and largely ignored in the context of psychiatry. Fewer articles have focused on what the latter countries may learn from those not implementing or not considering euthanasia legislation. In an increasingly diverse society, rapidly evolving in terms of fluidity and multi-ethnicity, cross-cultural research can help us learn from one another. To address the many dimensions of euthanasia, there is a need for input from a variety of academic fields, including sociology, anthropology, communication studies, and history. Further interdisciplinary research in all these areas could help inform policy and practice related to euthanasia.

Strengths and limitations

This is the first empirical in-depth interview study that uncovered the underlying ethical considerations of a variety and relatively large sample of health care professionals and volunteers in Belgium, a country with one of the most permissive legislative frameworks regarding euthanasia, as – unlike in some other countries – it does not exclude adults with psychiatric conditions per definition. Belgium is also one of the pioneering countries with such a legislative framework and can boast on two decades of euthanasia legislation and implementation.

We succeeded in providing a unique and representative sample of participants, varying in gender, work setting and expertise, and stances regarding euthanasia. Finally, and unlike former scientific studies that focused on either the somatic or psychiatric context, we now gauged for participants’ ethical perspectives on euthanasia in both fields of medicine.

There are also several limitations to our study. We may have experienced selection bias, as our sample of non-physicians had varying ages, but the sample of physicians was mostly older than 60. In addition, some interviews had to be postponed or cancelled due to COVID-19 restrictions and, potentially, due to legal and emotional concerns surrounding a high-profile euthanasia case being brought to court. Additionally, our sample exhibited heterogeneity regarding worldview (religious or non-religious), but possibly not regarding other culture-sensitive aspects, like migration background. As our qualitative research focused on exploring themes, narratives, and shared experiences rather than on ensuring high participation rates for statistical generalizability, drawing definitive conclusions regarding the prevalence of each opinion (pro/ambivalent/critical/against), the level of experience, or perspective across the entire spectrum of euthanasia practice is beyond the scope of our study.

Finally, although there is a growing number of countries and states around the globe with a legislative framework on euthanasia, all the legal frameworks differ from one another, so the results of our study cannot be generalized to the specific euthanasia context in e.g., Switzerland or Canada.

Our study illuminates the foundational values guiding perceptions of euthanasia, including autonomy, compassion, quality care, and justice, which permeate through four interconnected tiers: the patient, their inner circle, the medical community, and society at large. Despite varied stances on euthanasia, participants demonstrated a convergence of ethical principles across these tiers, shaped by nuanced interpretations and considerations. While explicit discussions of distinct ethical values were infrequent, their profound impact on euthanasia perspectives underscores the importance of ethical discourse in navigating this complex issue. By fostering inclusive dialogue and reconciling diverse values, we can promote informed decision-making, justice, and empathy in end-of-life care, particularly in psychiatric settings. Interdisciplinary research is essential for a comprehensive understanding of euthanasia’s dimensions and to inform policy development. While our study is rooted in Belgium, its implications extend to the broader euthanasia discourse, suggesting avenues for further exploration and cross-cultural understanding.

Data availability

The datasets generated and/or analysed during the current study are not publicly available due reasons of privacy and anonymity, but are available from the corresponding author on reasonable request, following procedures from all 3 Medical Ethics Committees involved. To access the supplementary materials, see the Open Science Framework repository at https://osf.io/26gez/?view_only=af42caddb2554acfb7d1d5aabd4dec7a . Upon publication of this paper, the repository will be made public, and a shorter link will be provided.

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Acknowledgements

The authors wish to thank prof. dr. Kenneth Chambaere and prof. dr. Kurt Audenaert for their preliminary advice regarding the ethics of the research methodology, dr. Steven Vanderstichelen for his help with the interviews (i.e., conducting and transcribing) and all the participants for sharing their professional and in some cases also personal experiences during the interview. We’d also like to thank prof. dr. Kenneth Chambaere for the supervision during the conducting of the interviews and his feedback on the ‘near to final’ draft.

MV is funded by the Research Foundation Flanders via research project (G017818N) and PhD fellowship (1162618 N).

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The article has been developed with the following authors’ contributions: MV was responsible for the study methodology and managed ethical approval; MV conducted most of the interviews and wrote the main manuscript texts. AL drafted the ethical interpretation framework. MV, LM, KP and AL were responsible for the coding structure and data interpretation and performed a critical review and revision of the final manuscript.

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This research project was performed in accordance with the Declaration of Helsinki and the European rules of the General Data Protection Regulation. It received ethical approval from the Medical Ethics Committee of the Brussels University Hospital with reference BUN 143201939499, from the Medical Ethics Committee of Ghent University Hospital with reference 2019/0456, and from the Medical Ethics Committee of the Brothers of Charity with reference OG054-2019-20. The interviews were held after obtaining informed consent from all the participants.

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Verhofstadt, M., Moureau, L., Pardon, K. et al. Ethical perspectives regarding Euthanasia, including in the context of adult psychiatry: a qualitative interview study among healthcare workers in Belgium. BMC Med Ethics 25 , 60 (2024). https://doi.org/10.1186/s12910-024-01063-7

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