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Ethics in Qualitative Research

• First Online: 01 December 2017

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• Sylwia Ciuk 4 &
• Dominika Latusek 5  

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In this chapter, we explore a number of ethical questions and ethical dilemmas that can arise at different stages of the research process. Rather than attempting to provide an answer to these or a full overview of the ethical issues encountered by researchers, we aim to sensitize the reader to some of the complexities involved in trying to do qualitative research in an ethically sensitive manner. We see ethics not as a uniform set of rules or a formal institutional requirement but rather as an integral element of research praxis. We therefore consider a number of ethical questions that are likely to arise at different stages of the research process and alert the reader to some ethically important moments that they might encounter. We start by looking at some ethical questions linked to the research design. We then turn to discussing ethical challenges associated with negotiating access, trying to obtain informed consent from participants as well as maintaining and managing relationships with them. We conclude by discussing ethical issues in relation to data presentation.

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Sylwia Ciuk

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Ciuk, S., Latusek, D. (2018). Ethics in Qualitative Research. In: Ciesielska, M., Jemielniak, D. (eds) Qualitative Methodologies in Organization Studies. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-65217-7_11

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Ethical dilemmas and reflexivity in qualitative research

Anne-marie reid.

1 Leeds Institute of Medical Education, University of Leeds, Leeds, UK

Jeremy M. Brown

2 Postgraduate Medical Institute, Faculty of Health and Social Care, Edge Hill University, Ormskirk, Lancashire, UK

Julie M. Smith

3 Nuffield Orthopaedic Centre, Oxford, UK

Alexandra C. Cope

4 Frimley Health NHS Foundation Trust, Surrey, UK

Susan Jamieson

5 School of Medicine, Dentistry & Nursing, Glasgow University, Glasgow, UK

For medical education researchers, a key concern may be the practicalities of gaining ethical approval where this is a national or local requirement. However, in qualitative studies, where the dynamics of human interaction pervade, ethical considerations are an ongoing process which continues long after approval has been granted. Responding to ethical dilemmas arising ‘in the moment’ requires a reflexive approach whereby the researcher questions his/her own motivations, assumptions and interests. Drawing on empirical studies and their experiences in academic and clinical research practice, the authors share their reflections on adhering to ethical principles throughout the research process to illustrate the complexities and nuances involved.

Objectives and findings

These reflections offer critical insights into dilemmas arising in view of the ethical principles driving good conduct, and through domains which distinguish between procedural ethics, situational ethics, ethical relationships and ethical issues in exiting the study. The accounts consider integrity and altruism in research, gatekeeping and negotiating access, consent and confidentiality, power dynamics and role conflict, and challenges in dissemination of findings. The experiences are based on a range of examples of research in a UK context from managing difficult conversations in the classroom to video-ethnography in the operating theatre.

Discussion and conclusions

These critical reflections make visible the challenges encountered and decisions that must be taken in the moment and on reflection after the event. Through sharing our experiences and debating the decisions we made, we offer insights into reflexivity in qualitative research which will be of value to others.

A Qualitative Space highlights research approaches that push readers and scholars deeper into qualitative methods and methodologies. Contributors to A Qualitative Space may: advance new ideas about qualitative methodologies, methods, and/or techniques; debate current and historical trends in qualitative research; craft and share nuanced reflections on how data collection methods should be revised or modified; reflect on the epistemological bases of qualitative research; or argue that some qualitative practices should end. Share your thoughts on Twitter using the hashtag: #aqualspace

Introduction and context

The importance of procedural ethics, gaining initial approvals for research studies, is well-established and guided by the principles enshrined in the Declaration of Helsinki and the Nuremberg code [ 1 ]. Ethical approval procedures are often viewed as a ‘hurdle’ to be surmounted, and arguably overshadow full consideration of the challenges of process ethics, the ethical tensions and dilemmas which arise throughout the practice of research. This paper aims to bring insights into ethical dilemmas which permeate research at all stages, from initial approval through data collection, dissemination of the findings and exiting the study [ 2 ]. These insights, developed from the authors’ personal accounts of their own practices, are derived from a range of experiences of medical education research in different settings.

Procedural ethics in medical education is guided by the codes of practice devised by education research bodies such as the British Educational Research Association (BERA) and the American Educational Research Association (AERA). These codes are applied by ethics committees who provide scrutiny at a national or local level depending on the context and nature of the research. For example, in the Netherlands, a national framework to review medical education research has been developed by the Ethical Review Board of the Dutch Association for Medical Education (NVMO) [ 3 ]. In the UK, ethical scrutiny is conducted under the auspices of university ethics committees, except where there is patient involvement, in which case clinical ethics committees are involved.

Until relatively recently, medical education research has been given something of a rough ride by ethics committees more used to considering clinical interventional research [ 4 ], although such committees are now becoming more familiar with educational research and the ethical issues arising. Guidelines for ethical behaviour are based on the philosophical principles of beneficence , do good; non-maleficence, do no harm; respect for autonomy, self-determination; and equity, treat fairly [ 5 ]. These principles are intended to guide thinking in applying for ethical approval by encouraging researchers to anticipate the ethical tensions and dilemmas which might arise during the study.

Guiding principles

The formulation of ethical research principles is based on the deontological approach proposed by Kant [ 6 ], whereby moral duty should be guided by principles which transcend circumstances. The utility of these principles in guiding practice is subject to critique on the basis that they may encourage following the ‘letter’ rather than the ‘spirit’ of the principle, or may in fact be too restrictive, limiting the scope and value of the research [ 7 ]. In addition, the consequences of research outputs are not entirely within the control of the researcher, and so the principle of non-maleficence, do no harm, may be difficult to achieve in all cases [ 8 ].

Guillemin and Gillam [ 9 ] distinguish between the domains of procedural ethics (gaining approval) and that of process ethics (ethics in the course of practice). In doing so they recognize that ethics are essentially situational, and that ethically sensitive issues occur ‘in the moment’ as research unfolds [ 7 , 9 ]. Tracy [ 2 ] elaborates further in proposing four domains to guide thinking; procedural ethics (approval processes), situational ethics (the research context), ethical relationships (dynamics between the researcher and participants) and ethical issues in exiting the study (completion and disseminating findings). This approach recognizes the ongoing, unanticipated challenges which might arise beyond gaining approval for the study and which require a high degree of researcher ‘reflexivity’ in responding ethically.

Shacklock and Smyth [ 10 ] describe reflexivity as the conscious revelation of the underlying beliefs and values held by the researcher in selecting and justifying their methodological approach. From an epistemological perspective, a reflexive approach recognizes knowledge as constructivist, developed throughout the research process and contingent upon existing understandings and beliefs [ 11 ]. Transparency about the researcher’s position and potential biases and assumptions is vital in judging accounts of qualitative research and the authenticity of the findings. This paper seeks to illustrate reflexivity in managing ethical tensions and dilemmas through accounts of ‘practitioner-researchers’, that is, those with a role in academic or clinical practice who also conduct research.

This researcher position is one with a working knowledge of the field of study, a shared identity with participants, sensitivity to competing priorities and as one known to participants outside of the researcher role. This practitioner-researcher position is valuable in developing practice insights. However, it may equally bring assumptions and biases which have ethical implications but which are not commonly made explicit in medical education research. The authors seek to address this by offering critical insights into their personal ethical dilemmas drawing on the ethical principles proposed by Beauchamp and Childress [ 5 ], and with reference to the framework proposed by Tracy [ 2 ]. As stated, the latter concerns procedural ethics (formal approval procedures), situational ethics (issues arising specific to context), relational ethics (awareness of researcher actions on others) and exiting ethics (considerations arising beyond data collection). The authors’ accounts (indicated by their initials) include gatekeeping and negotiating access in procedural ethics, debated by JB and SJ; questions of consent and confidentiality in situational ethics experienced by AC; power dynamics and role conflict in ethical relationships debated by AMR and JS and issues of confidentiality and anonymity which challenged AC in dissemination of her findings.

Procedural ethics

Procedural ethics, the formal approvals required for a study to commence, are dependent on the justification for the study and a stated commitment to adherence to ethical principles. Even before embarking on the formal application, the good intentions of the research need to be carefully weighed up against the vested interests of the researcher involved. Tracy [ 2 ] advocates that researchers practise (self-) reflexivity ‘even before stepping into the field … [to assess] … their own biases and motivations’ (P. 842). An illustration of this is provided by JB, an experienced academic and researcher in postgraduate medical education. He reflects on his role conflict as gatekeeper in pursuit of integrity and altruism in research practice. Gatekeepers are those who give access to a research field, or, ‘are able to control or limit researchers’ access to the participants’ [ 12 , P. 452]. Another aspect of the gatekeeper’s dilemma is described by SJ in relation to her role in managing the research of others. This follows JB’s story.

Integrity and altruism

JB: The Universities UK ‘Concordat to Support Research Integrity’ [ 13 ] calls for integrity and research excellence throughout the duration of a project. However, one, often hidden complexity, concerns the personal motivation of the researcher, a troubling question for me in leading a research program funded by a postgraduate medical department. Despite beneficent intentions and careful adherence to research governance processes, I retain lingering doubts as to the extent to which hidden coercive influences impact on participant recruitment.

Medical education research is relatively poorly funded and time pressured as many researchers are practitioners with substantial academic and/or clinical roles and responsibilities. As such, these researchers need to reflect upon, and be transparent about, their competing interests [ 14 , 15 ]. Although this issue has been highlighted for some time in the field, change has been slow, as evidenced by the relatively low number of competing interests disclosed in a survey of medical education related journals [ 16 ]. Walsh [ 17 ] suggests that medical education researchers may not deliberately fail to disclose, but rather fail to recognize their own competing interests due to the ‘bias blind spot’.

Bearing this in mind, I am conscious of relying heavily on the goodwill of participants with whom I may have relationships before, during and after the study. I believe that the participant should be exercising judgement based on the validity of the study in which they are consenting to participate, rather than on that relationship. Despite the best intentions to contribute to new knowledge, there must be an open and honest realization that research outputs are key benchmarks to measure how effectively researchers are performing. This dilemma was brought home to me while teaching postgraduate students, one of whom posed the question, ‘Can research ever be truly altruistic?’

Initially I was unsure of how to respond, but on reflection, admitted that in my experience, despite endeavouring to be honest and truthful to our participants, there may be a conflict between our personal motivations as researchers and reliance on the goodwill of participants. These reflections are unlikely to lead to any dramatic changes in practice; however, recognizing this potential conflict can at least remind us never to take for granted the commitment of willing participants.

Protection versus paternalism

SJ: Balancing the aims of beneficence, the value of research to the medical education community, with the principle of non-maleficence, avoiding harm, is an ethical conundrum which I have frequently encountered in managing an undergraduate medical education program. As a member of the medical education research community I am keen to support research, but am conflicted when faced with frequent requests to include our students as study participants. This particularly arises with survey research which is often the subject of such requests. The issue of survey fatigue is well-recognized [ 18 ], so much so, that my institution instigated a policy to restrict this [ 19 ]. The policy aims to prevent survey fatigue and ensure that students remain well-disposed to completing important internal and external surveys including the National Student Survey [ 20 ], the results of which are important key performance indicators for the institution.

On becoming director of a masters’ program in health professions education, tensions arising from my role as gatekeeper were exacerbated. The needs of the postgraduate students to recruit study participants potentially conflicted with the interests of the undergraduates. The availability of undergraduates as study material for postgraduate students and career academics is not new, and two decades ago undergraduate psychology students were described as ‘a captive population with little power’ [ 21 P. 74]. In a similar vein, Keune et al. [ 22 ] noted ethical issues arising in a scenario whereby a surgical resident introduced a mandatory team/trauma simulation training session. There was no indication that this session was also the basis of a research study until the trainees were presented with consent forms on arrival, clearly suggesting possible coercion. Another study explored the motivation of Indian medical students to participate in research conducted in their university and hospital learning environments [ 23 ]. Of the 300 participants, 61% admitted to participating against their genuine wishes, of which 26% agreed because a faculty member had asked them and 4% because they had not appreciated the right to refuse.

These examples demonstrate a tension between protecting potential participants and respecting their autonomy to choose whether or not to participate in research. One solution as gatekeeper may be to give agreement for participants to be recruited via a general email to a whole cohort, but prohibit purposive sampling of a specific group who may feel more pressurized. Managing access to students as participants highlights for me the ‘grey area’ between protecting the vulnerable and behaving paternalistically in upholding ethical principles.

Situational ethics

After formal approval and access has been granted, unanticipated ethical questions may arise due to the specific nature of the research setting [ 1 ]. In clinical settings data collection occurs within the course of clinical practice which brings specific challenges. AC, a colorectal surgeon whose doctoral research investigated teaching and learning in the operating theatre grappled with issues of consent in the context of patient autonomy.

Issues of consent in the operating theatre

AC: My research followed principles of naturalistic inquiry [ 24 ], capturing the phenomenon of teaching and learning in the operating theatre, as it happened, through ethnographic observation, video and audio-recordings [ 25 ]. One challenge of capturing naturalistic data is gaining prior consent of participants, as it can be difficult to predict who may be co-present within an operating theatre. In my study there was potential for inadvertent participants to be captured during data collection, defiling the research principle of autonomy—the right to determine participation or non-participation [ 5 ].

One approach to uphold autonomy was in the choice of microphone for audio capture: the ‘XTag RevoMic’ which has a short capture range. This meant that talk at the operating table of consenting participants was recorded but that others entering the operating theatre were not inadvertently recorded. The recording was taken from a camera placed within the operating lamp for open surgery, and from a laparoscopic (internal body) camera so that the site of the operation was captured but not the faces of those present. Assurance of this was key to maintaining trust between myself as researcher and the clinical teams involved.

Potential patient participation in the study also raised issues of autonomy. The study explored interactions between surgeon and trainee, but the patient’s body cavity formed the backdrop for video recordings of hand movements and the interactions involved. This meant that the patient would be co-present during the data collection episode although under anaesthetic. Murphy and Dingwall [ 26 ] state that ‘one must distinguish between those for whom the research is likely to be consequential and those who are tangential to it’. The ethics committee deemed that patient participants were peripheral, and that for this non-interventional research, patient consent was not required. General Medical Council (GMC) guidance specifies that doctors may use recordings such as laparoscopic video streaming or images of internal organs for secondary purposes (such as research), without seeking consent from patients, provided that the recordings are captured as part of patient care and are anonymized [ 27 ]. In this study recordings were captured by the research team and therefore were not a routine part of patient care.

The clinician participants, in particular the nursing staff, expressed very strong feelings that the patient should also be recognized as having the right to consent in making an informed judgement in whether or not to participate. Despite this presenting an extra hurdle for me as researcher, in my surgeon role I was used to gaining patient consent for operations and agreed that patients should be given the right for their procedure to be part of the study or otherwise. I discussed the study with patients, providing a bespoke ‘plain language’ Participant Information Sheet and consent form. Inevitably this raised separate ethical difficulties as patients were anxious that by consenting, they were agreeing to be operated on by a learner surgeon (given that the study was investigating clinical teaching and learning). I had to deal with patient vulnerability sensitively, explaining that participation in the study or otherwise would have no bearing upon their clinical treatment, or the person performing the operation, emphasizing that this was a non-interventional study. In this way the autonomy of patients to choose to participate was respected. No patient declined to be part of the study on this basis.

Ethical relationships

The issues arising described by AC highlight the complex nature of ethical relationships in research. The researcher-participant dyad is dependent upon any existing relationship with potential participants and a reassessment of the status of this in the context of the study aims and demands [ 28 ]. Managing power dynamics, role conflict and role boundaries in relationships are explored here firstly by AMR and then by JS, each of whom experienced such issues in their respective doctoral studies.

Power dynamics and role conflict

AMR: Power asymmetry is a feature of research with the balance generally considered to be in favour of the researcher who directs the process while the participant responds [ 28 , 29 ]. Ben-Ari and Enosh [ 30 ] argue that this power is actually co-constructed through the process, as participants exert power in shaping knowledge through choosing what to reveal. An illustration of such power dynamics occurred during my study on partnership working in the development and design of a new healthcare degree, commissioned by the Health Authority [ 31 ]. As program leader, I led the development and delivery of the curriculum and managed the team involved. This brought me the benefit of access to the university team and senior healthcare managers as participants, but also role conflict in managing relationships as the study progressed.

I was acutely aware of my potential biases and power dynamics as both researcher and manager; when interviewing members of my own team I was sensitive to the ‘ethics of care’ [ 1 ]. A specific dilemma arose during an interview with a lecturer when I asked a question from the schedule. Rather than respond to this, the interviewee took the opportunity to air personal grievances. The interview may be viewed as a dialogic process, and my sense of control of the dialogue was challenged by the participant taking ‘counter-control’ [ 11 ] in deviating from the schedule. I was unsure of how to react, feeling it inappropriate as researcher to challenge or make a direct response. In order to avoid distractions and regain control, I steered the conversation back to the interview schedule.

Although in the moment I felt that I was acting ethically in prioritizing the quality of the research [ 32 ], the issue troubled me later. It seemed inappropriate to raise the grievance with the interviewee in my management role after the event as I had assured participants of the confidentiality of the proceedings. With hindsight, given the power asymmetry in the manager-employee relationship, I now believe that seeking a later opportunity to discuss the grievances would have respected the autonomy of the staff member and provided duty of care. On reflection, a different interviewer may have avoided such circumstances occurring, but in this instance I was expected to conduct my own interview as part of the doctoral training.

Managing multiple identities in an acute setting

JS: My doctoral study involved conducting a multi-site, observational, longitudinal research study, focusing on clinical reasoning development in final year medical students as they transitioned to junior doctors 1 . This required managing a number of boundary issues through my overlapping roles of clinician, researcher, teacher and mentor. As I observed participants in both simulated and clinical workplaces, the ethical challenges of these roles developed. I had to ensure that participants could opt in or out of various clinical scenarios as well as at different data collection points. I also had to be mindful of my own potential biases and the need to treat them equitably, neither advantaging nor disadvantaging them as participants in the study. Furthermore, I had to consider the secondary participants who were the patients and ward staff in each workplace. Given the opportunistic and serendipitous nature of the workplace, audio-recorded consent was initially sought in the moment from secondary participants, followed by full written consent.

My ontological position, in particular my predominantly insider role, required a high degree of self-reflexivity [ 2 ]. Despite extensive prior approvals and permissions, I anticipated and faced ethical dilemmas arising from my relationships as both an ‘insider’ (a middle grade clinician), and an ‘outsider’ (clinical settings beyond my own workplace and field of expertise). The potential for role conflict also arose between my clinical and researcher role. It was agreed that should an emergency occur within the workplace, I would intervene if necessary in my clinical role in accordance with the GMC’s Good Medical Practice [ 33 ]. Furthermore, I would identify a senior member of staff in advance for each shift to whom I could report any instances of unsafe medical practice. Participants were made aware of my role and ethical position as this may have influenced their decision to be involved.

Ethical dilemmas arising during the study included critical incidents ranging from observing unsafe medical practice to observing primary participants being expected to deal with situations beyond their capabilities. One example occurred in observing a junior doctor who was covering obstetrics, an area in which they had little expertise. The junior doctor had been ‘emergency-paged’ to review an obstetric patient following a significant bleed, where no obstetrician was available. Walking to the emergency, as I unpicked the participant’s clinical reasoning, it became clear that this individual lacked the experiential knowledge and practical skills required. I felt very concerned by this and decided in the moment, that in the interests of non-maleficence (avoiding harm), I would switch role and take an active part in the patient management. Fortunately, shortly after our arrival at the emergency, an appropriate senior doctor appeared and no intervention on my part was required. Had there been unsafe practice, I would have reported the incident following the protocols in place to protect patient safety. Although in this case the situation was resolved, recognising the vulnerability of the junior doctor, I alerted the clinical supervisor to the incident to provide support and ensure that the clinical team debriefed after the event.

Exiting the study

Ethical dilemmas may continue beyond the study as exemplified by AC, who faced challenging issues in maintaining confidentiality and anonymity in dissemination of her findings which included video and audio data.

Challenges in dissemination of findings

AC: Observational field notes and interview transcripts from my study could be presented at academic meetings in anonymized format. However, data from synchronized video and audio, although names were removed, could not be fully anonymized as voices, gestures and body language rendered individuals identifiable. As a clinical researcher, I was able to select clips and the appropriate mode of presentation for particular audiences. For example, at surgical academic meetings where there was a high chance of identification of participants, which might make them vulnerable, I used subtitled video clips to illustrate research findings. This meant that intonation, pitch and rise and fall of delivery within speech were lost; however, the identity of participants was concealed.

For presentation at medical education meetings there was a lower chance of participant identification. The audience was particularly interested in analysis of exact timing of ‘teaching talk’, the guidance given and subsequent responses of the trainee surgeon including pauses, hesitations and hand movement. To enable this, with support I digitally altered audio data so that the pitch of speakers’ voices was modified to conceal identity. On occasion, specific clips with names removed but not completely anonymized format were presented using speakers’ own voices. Express written permission was received from participants for use of that particular clip, recognizing my ability as practitioner-researcher to gauge the likely sensitivity of the data and the audience. For publication purposes, Jeffersonian [ 34 ] transcription notation was used. This technique records pauses, intonation, pace and stresses in the delivery of speech so that the transcript indicates not only what is said, but also how it is said. These different methods of presenting the data were selected in the spirit of non-maleficence, avoiding potential harm to participants, acknowledging that complete anonymity could not be entirely guaranteed. This was made clear to participants at the outset.

Discussion and conclusion

Qualitative research, by its nature, involves immersion in situations and relationships which are complex and unpredictable. These personal accounts have explored the nuanced nature of ethical tensions and personal dilemmas which have emerged for us, as practitioner-researchers beyond the approval process and arising throughout the research. Although some issues are particular to specific situations, there are common features in the challenge of thinking and acting ethically as a qualitative researcher. These include striving to maintain integrity and altruism, upholding autonomy in gaining consent and access, balancing protection of vulnerable participants with paternalism, managing multiple roles and power relations and avoiding harm in dissemination of findings.

The common thread running through our experiences is the sometimes troubling questions raised which may be difficult to foresee, and even when anticipated, require a response ‘in the moment’ [ 9 ], which has ethical consequences. Although the risks involved in JS’s experience of managing an obstetric situation as a clinician-researcher on the wards seem high, and the consequences are immediate, JB’s classroom conversations regarding integrity and altruism in research may have far reaching consequences. Training those learning the craft of research carries significant responsibility as it is key to how future researchers understand ethical principles and manage their own conduct in applying them.

The principles of beneficence, non-maleficence, justice and equity should guide action, but the balancing of these principles effectively from the initial approval through to completion of the study and beyond requires a truly reflexive approach. Through sharing our reflections and insights we hope to raise awareness, not only of the challenges of conducting qualitative research ethically, but also of its value when conducted in a rigorous, ethically informed, thoughtful and reflexive manner. This has implications for those undertaking qualitative enquiry as well the gatekeepers who manage access and for those who prepare and train the researcher of the future.

Biographies

BDS, MEd, PGCert, EdD PFHEA, is Associate Professor of Medical Education, University of Leeds. Her clinical background is in General Dental Practice. She has a Professional Doctorate in Education, is a Principal Fellow of the Higher Education Academy and is a member of the Association for the Study of Medical Education (ASME) Research Committee.

BA (Hons), PGCE, PhD, is Professor of Clinical Education at Edge Hill University. He leads a medical and dental education research program funded by Health Education England North West.

BMSc (Hons), MBChB, MRCS, PGCert, MFST (Ed), PhD, is a Specialty Registrar in Trauma and Orthopaedic Surgery at The Nuffield Orthopaedic Centre, Oxford. She has a PhD in medical education for which she received ASME’s New Researcher Award.

MBBS, MEd, PhD, FRCS, is a Consultant General and Colorectal Surgeon at Frimley Health. She has a PhD in medical education and is a module lead on a Masters in Surgical Science and Practice at the University of Oxford.

BSc (Hons), PGCert, EdD, PhD, is Professor of Health Professions Education at Glasgow University. She has a Professional Doctorate in Education and is Chair of the Education Research Committee of the Association for the Study of Medical Education (ASME).

Conflict of interest

A.-M. Reid, J.M. Brown, J.M. Smith, A.C. Cope and S. Jamieson declare that they have no competing interests.

1 Smith, JM. The Transition from Final Year Medical Student to Foundation Doctor: The Clinical Reasoning Journey. Dundee; 2015 (unpublished thesis)

Editor’s Note: Commentary by: E. Paradise, 10.1007/s40037-018-0414-0.

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4 The Centrality of Ethics in Qualitative Research

Anna Traianou, Department of Educational Studies, University of London

• Published: 04 August 2014
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This essay illustrates some ethical issues presented in the literature: minimization of harm, respect for individual autonomy, and preservation of privacy. It then examines why research ethics is now treated by qualitative researchers as increasingly central to their work. Key factors here are the rise of ethical regulation and diversification of approaches to qualitative inquiry, with some recent approaches treating ethics as fundamental. The essay notes an important sense in which ethical commitments are central to research: inquiry must be underpinned by epistemic values and virtues that facilitate the production of knowledge. However, it is argued that the increasingly common tendency to make central those principles concerned with how the people being studied should be treated constitutes a form of moralism, characterized as “the vice of overdoing morality.” The essay closes with an attempt to outline the proper role that research ethics ought to play in qualitative research.

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Statistics for the Public Good

Ethical considerations associated with Qualitative Research methods

Introduction.

This high-level guidance has been developed by the UK Statistics Authority’s Centre for Applied Data Ethics (CADE), and the UK Government Data Quality Hub (DQHub), based at the Office for National Statistics (ONS). The guidance can be used as a practical resource to help researchers identify different ethical issues when conducting qualitative research.  

This guidance is not exhaustive but aims to support researchers navigating the ethical issues surrounding qualitative research projects (particularly in relation to primary data collection). It brings together existing literature on qualitative research methods and their ethical concerns. Links to further resources are provided if you would like to read about aspects in more detail.  

The guidance has been created for researchers using qualitative methods within the ONS . However, the ethical considerations discussed, and the mitigations for these, can be more widely applied to all types of qualitative research.  

The guidance is divided into several parts.    

• An introduction to qualitative research and why ethics matters in this space.   
• An overview of some of the ethical considerations associated with qualitative research methods, and some potential mitigations for these issues. This includes an overview of some of the qualitative methods used within the ONS.  
• An ethics checklist which summarises the main points covered in this guidance.    
• A list of helpful links to further resources.   

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Ethical Considerations in Qualitative Research: Summary Guidelines for Novice Social Science Researchers

2023, Social Studies and Research Journal

This paper sheds light on ethical considerations that must be taken into account when conducting qualitative research. Ethics revolve around the responsibilities of researchers towards their participants, their audience, their society, and their academic communities. Researchers should refer to some ethical guidelines to ensure they have adhered to the principles of good research practices. This paper summarises the ethical considerations that we generally need to promote in qualitative research when collecting and analysing data. These include ethics of respect and conflict of interest, relationship with participants, Informed consent, confidentiality, anonymity, reporting back to the participants, trustworthiness of research, and issues of translation

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Fouzi Bellalem

International Journal of Research

This paper reports on a qualitative study which explored the beliefs of a sample of foreign language teachers about school in Algeria within a context of curriculum reforms. It was found that the participants believed that the Algerian school was generally a site of power and domination; that there was a drastic lack of resources; that students were unmotivated; that parents were disengaged; and that school administration was bureaucratic. The paper concludes that curriculum reforms in Algeria were not paralleled with social, economic and political reforms of educational institutions. It is suggested that there is an urgent need to equip schools with resources to make them adequately prepared for the effective implementation of the new curriculum. However, in the long term, it is suggested that policy-makers should promote a culture of active participation of all those involved in education, mainly the teachers and parents, towards improving the current situation of schools in Algeria, and ultimately, of the educational system.

International Journal of Innovation and Scientific Research

Les récents développements politiques et économiques en Algérie ont aboutit aux réformes du système éducatif. Cet article nous rend compte d'une étude qualitative qui a exploré les croyances des enseignants de Français et d’Anglais sur l'innovation des programmes en Algérie. Les résultats indiquent qu’il y existe une incompatibilité entre les croyances des enseignants et l'innovation. L’étude met en évidence les facteurs qui favorisent cette incompatibilité d’un point de vue sociopolitique. En conclusion, il est soutenu que les croyances des participants n'avaient pas en fait été contestées avant la mise en œuvre du nouveau programme. Il est suggéré que la formation qui favorise la pratique réflexive doit être traitée en priorité. Il est également recommandé que les responsables politiques ainsi que les enseignants doivent s'efforcer à encourager un dialogue réciproque en vue d'améliorer le système éducatif en Algérie.

Christoph Maeder

This paper takes the point of departure in ethnographic studies carried out in IT-based learning contexts. The comprehensive fieldwork and case studies on the upper secondary ‘IT-schools’ cover three organizational levels: The school management level, The colleague/teacher level, and The teaching and learning practice level. In terms of methodology, the challenge has been to confront classic ethnography with a late-modern school world loaded with new IT tools and references to teacher professionalization and school culture as well as references to youth culture. In terms of an empirical analysis of the IT-based learning practice, the challenge is to cope with formal learning as well as with non-formal learning situations. Against this background, school case studies done during the period of reform (2000 – 2010) show both how the IT based strategies is challenging conventional strategies and how new concepts of blended learning is constructed to meet challenges from the practical le...

International Forum

Safary Wa-Mbaleka

Qualitative research continues to grow around the world. More and more scholars and institutions of higher education continue to embrace it. Publications must continue to be on practical ways of conducting qualitative research in general and conducting it especially ethically. This paper is focused primarily on practical ways of enhancing ethical practices in qualitative research. While many qualitative research books and articles discuss ethical considerations, it is good to have a paper that synthesizes effective strategies to enhance ethics in a much more practical way. This paper goes from the definition of ethics to the importance of ethical practices and to the implementation of practical considerations before, during, and after data collection in qualitative research. This paper is not meant to be exhaustive; however, it should be a good guide for qualitative researchers who wish to avail of practical strategies for good ethical practices.

Understanding Research MA Module

Nick Panteli

Assignment title: How can researchers negotiate their positionality and their influence on the informant to produce high-quality research? The example of two (formerly) working-class academics and working-class student habitus. Word count: 5492 Graded A in July 2019 as part of an MA module, 'Understanding Research'

Kassahun Melesse

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• Published: 29 June 2024

Recommendations to advance digital health equity: a systematic review of qualitative studies

• Sarah Wilson   ORCID: orcid.org/0000-0001-7803-3978 1 ,
• Clare Tolley 1 ,
• Ríona Mc Ardle 2 ,
• Lauren Lawson   ORCID: orcid.org/0000-0003-0433-5214 1 ,
• Emily Beswick 3 ,
• Nehal Hassan   ORCID: orcid.org/0000-0002-8302-5769 1 ,
• Robert Slight 4 &
• Sarah Slight 1 , 4  

npj Digital Medicine volume  7 , Article number:  173 ( 2024 ) Cite this article

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The World Health Organisation advocates Digital Health Technologies (DHTs) for advancing population health, yet concerns about inequitable outcomes persist. Differences in access and use of DHTs across different demographic groups can contribute to inequities. Academics and policy makers have acknowledged this issue and called for inclusive digital health strategies. This systematic review synthesizes literature on these strategies and assesses facilitators and barriers to their implementation. We searched four large databases for qualitative studies using terms relevant to digital technology, health inequities, and socio-demographic factors associated with digital exclusion summarised by the CLEARS framework (Culture, Limiting conditions, Education, Age, Residence, Socioeconomic status). Following the PRISMA guidelines, 10,401 articles were screened independently by two reviewers, with ten articles meeting our inclusion criteria. Strategies were grouped into either outreach programmes or co-design approaches. Narrative synthesis of these strategies highlighted three key themes: firstly, using user-friendly designs, which included software and website interfaces that were easy to navigate and compatible with existing devices, culturally appropriate content, and engaging features. Secondly, providing supportive infrastructure to users, which included devices, free connectivity, and non-digital options to help access healthcare. Thirdly, providing educational support from family, friends, or professionals to help individuals develop their digital literacy skills to support the use of DHTs. Recommendations for advancing digital health equity include adopting a collaborative working approach to meet users’ needs, and using effective advertising to raise awareness of the available support. Further research is needed to assess the feasibility and impact of these recommendations in practice.

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Introduction.

The World Health Organisation (WHO) advocates Digital Health Technologies (DHTs) to advance population health 1 . Digital health can be defined as the use of information and communication technologies within healthcare to provide healthcare users with services relating to the prevention, detection, diagnosis and management of diseases and other health conditions 2 , 3 , 4 . Examples of DHTs include smartphone applications and wearable monitoring devices that can empower people to better manage their own conditions, such as keeping track of symptoms or remotely monitoring their condition(s) over time 2 , 3 , 4 . DHTs can pick up signs of deterioration in healthcare users’ symptoms longitudinally and provide real-time data to healthcare professionals to help support tailored clinical decision making 4 . DHTs can also enable individuals with mobility issues and those living in rural areas to access healthcare. Digital health has gained global momentum due to its potential to contribute to personalised health care for patients, improved quality of care, and lower healthcare costs 5 , 6 .

However, there are growing concerns that DHTs may not lead to health benefits in all populations, with underserved groups (i.e., those typically left out of research or experience inadequate access to healthcare) at particular risk 7 . One possible factor contributing to this is digital exclusion, denoting disparities in motivation, access and use of DHTs across different demographic groups 8 . Digital exclusion can potentially create a barrier for various underserved groups, such as those who are on a low income, are not fluent in English, or homeless, thus exacerbating health inequities for these groups 9 . Individuals with visual impairment may also find on-screen reading challenging and many older adults with hearing impairments have expressed low motivation to use phone calls as a remote option to access healthcare due to their disability 10 .

Technology has advanced rapidly over recent years, with some DHTs (e.g., telehealth services, mobile phones, wearable devices, smartphone apps and other software) having greater relevance to the direct inequities underserved groups face compared to other DHTs. For example, DHTs designed to be solely used by healthcare professionals (e.g., electronic patient records) are less likely to directly impact healthcare service users, and so it is prudent to focus on DHTs that underserved groups may be asked to use. Qualitative studies gathering rich in-depth experiences from those whose voices are rarely heard (i.e., underserved groups) 11 , 12 will provide valuable insights into the facilitators and barriers regarding access, motivated and/or use of DHTs.

The WHO Bellagio eHealth Evaluation Group (2019) recognised the need to mitigate digital exclusion 13 , with organisations such as NICE (National Institute for Health and Care Excellence) requiring evidence that health inequities have been considered in the design of DHTs 2 . This includes important aspects of design, development or implementation of a DHT that support digital inclusivity, such as strategies to increase an individual’s access to suitable devices or connectivity, and educational support in digital literacy to increase DHT use 14 . To support the development of such strategies, it is vital to understand the needs of underserved groups as well as their experiences and perspectives of these strategies to identify what does and does not support digital inclusivity. However, there is currently no qualitative systematic review of key strategies conducted in this area; a key knowledge gap in the literature. To advance digital health equity, we aimed to systematically synthesise the literature on what key strategies have been used to promote digital inclusivity, and assess the facilitators and barriers to implementing and adopting these in practice based on underserved groups’ experiences and perspectives.

Study descriptions

Our search yielded 13,216 results. After removing duplicates ( n  = 2815), titles ( n  = 10,401) abstracts ( n  = 1224) and full-texts ( n  = 143) were screened. Ten papers met our inclusion criteria (Fig. 1 ). Inter-reviewer reliability was high with 99.33% agreement at title stage, 99.43% at abstract stage, and 97.89% at full-text stage. All included studies were found to have moderate- to high-quality levels (Supplementary Tables 7 and 8 ). None of the included studies measured or reported any participants’ health literacy.

A PRIMSA flow chart detailing our search and selection process applied during the article screening process.

Included studies incorporated a range of participants at risk of digital exclusion, including those from different cultural backgrounds (ethnic diversity, languages and religion) ( n  = 8) 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , those with limiting conditions (visual and hearing impairments) ( n  = 2) 21 , 22 , low educational attainment ( n  = 4) 15 , 19 , 20 , 21 , aged over 65 ( n  = 4) 16 , 20 , 21 , 22 , homeless ( n  = 2) 19 , 24 , and those who had low socioeconomic status ( n  = 5) 15 , 16 , 17 , 18 , 21 (Supplementary Table 9 ). All 10 studies used interviews 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , with two studies also conducting focus groups with participants 18 , 21 . (Supplementary Table 10 ). Inclusive digital health strategies were grouped into either outreach programmes providing educational support and/or access to devices ( n  = 2) 19 , 22 , or co-designing DHTs with underserved groups ( n  = 8) to gain feedback on the usability and acceptability of DHT to enhance inclusivity in future versions of the DHT (Table 1 ) 15 , 16 , 17 , 18 , 20 , 21 , 23 , 24 .

Our narrative thematic synthesis generated three overarching themes; user-friendly designs (e.g., software and website design elements that promoted inclusivity), infrastructure (e.g., access to DHTs) and educational support (e.g., training to develop digital literacy skills required to use DHTs) (Supplementary Table 10 ). Facilitators and barriers to the adoption of these themes are embedded in the discussion below and summarised in Fig. 2 .

Summary of the key facilitators and barriers to strategies to support digital health equity (using a user-friendly design, providing infrastructure and providing educational support) alongside the specific CLEARS groups the strategy will support.

User-friendly designs

User-friendly designs were a key theme supporting access and use of DHTs across seven studies 15 , 16 , 20 , 21 , 22 , 24 . Health-related software and websites needed to be compatible across different digital platforms, operating systems and devices including smartphones and desktops, and assistive technologies (e.g., screen reading software) to accommodate the needs of ethnically and linguistically diverse groups 17 , 18 , 22 , individuals with limiting conditions (visual and hearing impairments) 20 , 21 , older adults (+65 years) 20 , 22 , those with low educational attainment and low socioeconomic status 17 , 18 . For example, Yeong et al. noted how older adults with visual impairments and of low socioeconomic status needed websites to be compatible with different magnification levels and assistive technologies (e.g., iOS Voiceover [Apple Inc]; a screen reading software) to aid visibility 21 . The authors also noted how certain features aided navigation and minimised scrolling to help the user find information, such as tables of contents, drop-down menus, and ‘jump to top’ buttons 21 . Older adults with limiting conditions (visual or hearing) also suggested that navigation features, such as search bars and hyperlinks, needed to be of high contrast (compared to the rest of the screen) to improve visibility 20 , 21 . Yeong et al. emphasised how search features should be designed in a similar way to commonly visited search engines, like Google, to improve usability and reduce confusion 21 .

Older adults, homeless, ethnically diverse individuals and those with visual impairments all described how digital messages on software, health related websites or text messages should be simple, concise, and presented in a logical manner without time restrictions 18 , 20 , 21 , 24 . For example, older adults with visual impairments described how they did not have enough time to read the information when presented on a timed loop (i.e., rotating between different screens with information), and suggested that the user be able to manually control the timing of this loop 21 . Older adults interviewed in another study described how it would be useful if they could change the font size to improve the visibility of the text, and provide alternative languages for those who are not fluent in English 22 . Personalising information, such as allowing users to choose content that they are interested in, was felt to be one way of increasing the motivation to use health related websites and software amongst those with visual impairments 21 and ethnically diverse individuals 18 . Additionally, providing evidence that supported the key messages in healthcare information, such as the importance of reducing alcohol intake to reduce the risk of developing chronic health conditions, enhanced trust amongst ethnically diverse individuals 18 . Kramer et al. also emphasised how any communication should be culturally appropriate and avoid reinforcing stereotypes, especially for ethnically and linguistically diverse users 18 . For example, the language used to categorise different ethnicities on DHTs should avoid generic terms such as ‘men of colour’ as some ethnically diverse men found this offensive; they felt it defined them based on their skin colour and not their ethnic background. Instead, specific terminology should be used that accurately represented their ethnicities (e.g., African American for individuals with an African and American descent) 18 . Any imagery should also be inclusive to all cultural groups 18 .

It was felt that the overall user friendliness and engagement of health related software could be improved with the addition of engaging features 15 , 18 , 20 , 22 , 24 . This included interactive quiz elements 20 , notifications encouraging behavioural changes 18 , reminders about upcoming appointments (particularly for homeless individuals as this they may not have access to other reminders, like letters) 24 , ability to order a repeat prescription and schedule specific appointments (e.g., physiotherapy) 22 . Older adults of Jewish faith also suggested simplifying security features, as many found flicking between a text message with the password reset information and the screen (where the information should be entered) challenging 22 .

Infrastructure

Five studies described the need for supportive infrastructure, such as access to devices and connectivity (i.e., Wi-Fi) to support homeless individuals, ethnically and linguistically diverse groups, and individuals of low socioeconomic status 15 , 17 , 19 , 23 , 24 . For example, Howell et al. explained how community nurses in the UK provided homeless individuals with temporary access to smartphones during the pandemic so as to enable them to access vital digital healthcare support 19 . In the United States (US), homeless individuals were provided with phones (the Obama phone), credit and data plans financed through a government programme 24 . However, Asgary et al. found that some of these homeless individuals using the Obama phone plan often exceeded their limits when put on hold to schedule medical appointments 24 . They subsequently turned to friends and family for financial support to purchase credit 24 . Other homeless individuals were hesitant to accept this government support, with the authors reflecting on how this may have been due to the homeless experiencing a lack of government financial aid in the past 24 .

Homeless individuals 19 , ethnically and linguistically diverse groups 15 , 17 , 23 , and those of low educational attainment and low socioeconomic status 15 , 17 , 19 reported relying heavily on free Wi-Fi to be able to access healthcare. This included accessing free Wi-Fi in public spaces and transport systems, fast-food restaurants, clinics and families’ houses. However, they often experienced barriers to this connectivity with time limits set by the specific organisations (e.g., opening hours) 15 or restrictions placed on using shared devices (e.g., computer keyboards due to the risk of coronavirus spreading) 19 . Many participants suggested creating dedicated centres for digital health services with suitable devices and free Wi-Fi that would also include some private areas 15 . Access to these private spaces was felt to be important for some ethnic and linguistically diverse groups with low educational attainment and socioeconomic status, as they were concerned about being overheard when discussing/looking at confidential health information 17 . Many groups suggested that they would like the choice between both digital and non-digital access to healthcare, as this would help mitigate the risk of possibly excluding those with poor digital literacy skills, those who would prefer in-person consultations, or those who lack the resources to access digital healthcare 15 , 18 , 19 , 23 .

To complement infrastructural changes, ethnically diverse adults based in the US advocated for more resources to be provided by local government 15 . This included the introduction of new policies, such as reduced payment plans and regulations on the price of DHTs for lower income earners to make them affordable 15 . Older adults of Jewish faith and ethnically diverse adults with a low educational attainment and socioeconomic status also suggested that financial incentives could help promote greater access to DHTs and encourage motivation to use DHTs 15 , 22 . Alkureishi et al. highlighted how different organisations, such as hardware and Wi-Fi companies, might need to collaborate to ensure that these different components (e.g., devices, connectivity, financial aid) are jointly available to support successful implementation 15 .

Educational support

Provision of educational support was important for ethnically diverse individuals and older adults to enable their use of DHTs in five studies 15 , 16 , 19 , 20 , 22 . Ethnically diverse individuals with lower educational attainment and low socioeconomic status, and older adults of Jewish faith commonly reported asking family members to remain close during video healthcare consultations in case of technical issues 15 , or for their guidance with accessing online health information 22 . Mizrachi et al. found this support promoted independence over time as older adults’ digital skills developed through learning and they were further motivated to use DHTs on hearing positive experiences from their family and friends 22 .

Some individuals relied on educational support from professional services to use DHTs 19 . It was felt that in-person educational support from community workers or health care professionals with supplementary materials (e.g., videos and written information) would be beneficial prior to attending virtual appointments to support ethnically diverse adults (both above and below 65 years) from a low socioeconomic status and low educational attainment 15 , 16 Alternatively, Alkureishi et al. noted some participants expressed preference for accessing training classes at healthcare sites (e.g., hospitals) and community centres, where support was provided by ‘technology champions and coaches’ 15 . However, older adults of Jewish faith highlighted how advertisements to promote awareness of support services would be unlikely to reach individuals in their community and those who were socially isolated and arguably most in need of support 22 . Some studies also highlighted how certain groups (e.g., ethnically diverse adults with low socioeconomic status and low educational attainment, and older adults of Jewish faith) might also be reluctant to accept this educational support due to concerns around burdening others, feeling helpless, and/or reaffirming how they are unable to do something independently 15 , 22 .

This systematic review synthesises strategies that promote digital inclusivity and assess the barriers and facilitators to adopting these in practice. Our findings highlighted three key themes relating to user-friendly designs, supportive infrastructure, and provision of educational support. Barriers to adopting these strategies included a lack of acceptance amongst some underserved groups to receive such support, whilst facilitators included promoting trust amongst ethnically diverse groups by providing lay term friendly evidence that supports health claims.

Our findings highlighted how health-related software and websites must be interoperable across different devices to accommodate the needs of underserved groups. This form of user-friendly design is advocated by national healthcare providers and government bodies; for example, the UK and US have legislation in place which mandates that websites and software in the public sector be ‘perceivable, operable, understandable and robust’ to ensure that those with visual and hearing impairments, low reading ability (reading age of 9) and/or those who are not fluent in English can access and understand the information provided 25 , 26 . However, a recent study reported that public health authority websites in only three countries (UK, Italy, China) out of a total of 24 actually adhered to these accessibility standards when checked 27 . Additionally, the wider literature supports our findings on how the use of appropriate language and imagery can improve end-user satisfaction 18 , 28 . National bodies, such as the US National Institute of Health (NIH), have developed the ‘National Culturally and Linguistically Appropriate Services (CLAS) Standards’ to assist developers and researchers in developing culturally and linguistically appropriate services 29 . The wider literature also suggests co-designing DHTs with underserved groups at the earliest stages to help ensure that they meet the needs of all end-users 30 . This involves co-designing security features that are easy-to-use and align with the UK government ‘ secure by design principles’ , to help overcome any potential future barriers to usage 31 , 32 .

Our results also highlighted the need for supportive infrastructure to facilitate access and use of DHTs. Government schemes in high-income countries are already available; for example, the ‘Obama phone’ in the USA and the Emergency Broadband Benefits and social tariffs (reduced payment phone plans) in the UK, to support those on a low income to access smartphones and phone plans 24 , 33 . However, implementing supportive infrastructure might not be viable for low to middle income countries as they may have less suitable centres to provide devices and free public Wi-Fi spots, which high income countries already have access to 34 . Some charity organisations, such as the Good Things Foundation, have started to repurpose donated corporate IT devices and deliver them to those who are digitally excluded 35 . However, better promotion of the support available and a collaborative working environment is needed, especially by healthcare professionals, social services, and charities. Free phone numbers would also help to facilitate access to healthcare services. Some underserved groups would like the option of accessing healthcare via non digital means, thus questioning the temptation to always use technology to potentially address healthcare challenges 36 . Researchers need to consider whether a new DHT will provide an equitable solution to the healthcare problem and whether other means of accessing healthcare should also be provided within healthcare systems 37 .

This systematic review also underlined the importance of providing educational support, from family or professional services, to encourage motivation and capability to use DHTs. There is a need for effective advertising of this support to groups at particular risk of both digital and social exclusion, such as older adults and homeless individuals, in order to increase their awareness 38 . A systematic review conducted by Ige et al. 39 suggested using a combination of two or more strategies to reach socially isolated individuals, including referrals from relevant agencies (e.g., GPs, pharmacists etc), as this might be a more effective approach than relying solely on public facing methods 39 .

Previous recommendations to promote digital health equity have centred around guidance for behavioural and social science researchers with limited insight to the facilitators and barriers to implementing strategies into society and appear limited to research settings 40 . Previous reviews have applied the socioeconomic model to inform recommendations to promote digital health equity, such as providing devices (individual level support), educational support (relationship/interpersonal level support), access to connectivity infrastructure (community level support) and implementing policies (societal level support) 41 , 42 . However, there has been little consideration given to those individuals who belong to two or more underserved groups at risk of digital exclusion. Our systematic review considered this intersectionality and provides practical recommendations that focus on two main areas: collaborative working and effective advertising (Fig. 3 ). Collaborative working between the DHT developer, healthcare professionals, policy-makers, voluntary sectors, patients and public members of underserved groups is vital to help improve the co-design of DHTs and provision of support and should be embedded from the very beginning of the design and development process 30 . Effective advertising strategies are also vital to raise public awareness and ensure that those who are, or know of an individual, at risk of digital exclusion are made aware of in-person support that is available and how to access it. DHT developers and researchers should also be aware of the accessibility and inclusivity standards (e.g., government legislation and CLAS) and on how to use them to support digital health equity.

Summary of the two key recommendations to advance digital health equity, centring around adopting a collaborative working environment and using effective advertisement.

This review used a comprehensive and systematic approach to identify relevant literature. Included studies were published within the last decade to remain relevant to the current digital healthcare landscape. We opted to focus on qualitative research to gather rich detailed information on the facilitators and barriers to each strategy. Despite no geographical restrictions being placed on this search, we found that all included studies were conducted in high-income countries, which may limit the applicability of these findings to low- and middle-income countries; this also highlights the importance of further work in this area. Representation of the different religious groups and languages was limited, highlighting a gap in the literature and a need for greater diverse inclusion in research. None of the included studies reported on participants’ health literacy, which has previously been suggested to overlap with low digital literacy 43 ; this information would have aided our understanding of whether the participants included in the qualitative studies were truly representative of the groups that they were intended to represent. Future research should incorporate a standardised health literacy measure, such as the Newest Vital Sign (NVS) 44 or the Health Literacy Questionnaire (HLQ) 45 , into their methodology to provide greater detail on the participants in their study.

The appropriateness of recommendations from this systematic review could be further explored using an established framework, such as the APEASE criteria (Affordability, Practicability, Effectiveness, Acceptability, Size effects/safety, and Equity) 46 . This would involve seeking the perspectives of CLEARS demographic groups’ and relevant stakeholders’ (e.g., policy makers and community workers) on the practicalities of implementing these different strategies and recommendations to further advance this important area of digital health equity. The facilitators and barriers to implementing government-issued public health website accessibility standards should also be explored to further understand how to encourage use of these standards.

This systematic review identified three key themes relating to digital inclusivity, associated facilitators and barriers, and recommendations for advancing digital health equity. This information will guide individuals when designing, developing and implementing digital health interventions to ensure it is done in a digitally inclusive manner. This review also highlighted the need for further work to explore the feasibility and acceptance of implementing different strategies and recommendations to support digital health equity amongst those at risk of digital exclusion.

Identification of key groups at risk of digital exclusion

We conducted a scoping review of the literature to identify the sociodemographic factors that could put an individual at risk of digital exclusion. Based on the findings published in peer-reviewed articles 24 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , systematic reviews 61 , 62 , 63 , 64 , government reports 8 , 65 , and regulatory organisation documents 66 , we identified a number of sociodemographic factors that we complied into six groups, relating to Culture (ethnicity, language, and religion) 8 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 62 , Limiting conditions (visual and hearing impairments) 6 , 54 , 66 , Education (at or below United Kingdom (UK) government mandated level or equivalent) 52 , 55 , 56 , 66 , Age (over 65 years) 51 , 54 , 55 , 56 , 62 , 66 , Residence (rural or deprived areas [based on consensus data within a country], or homeless) 8 , 24 , 51 , 60 , and Socioeconomic status (low income [earns less than 60% of the median household annual income within a country] and unemployed individuals) 8 , 52 , 55 , 56 , 62 , 65 , 66 abbreviated to CLEARS (Fig. 4 ). These factors often intersect (i.e. intersectionality), placing an individual at even greater risk of digital exclusion 8 , 64 , 65 , 66 .

A framework which encompasses sociodemographic factors associated with digital exclusion and recognises the role of intersectionality.

Search strategy

This systematic review was registered with PROSPERO (CRD42022378199) and followed PRISMA guidelines 67 . The search string utilised terms from two relevant scoping reviews 8 , 68 , with additional relevant terms included when searching four large online databases (Medline, Embase, PsycINFO and Scopus) (Supplementary Tables 1 – 4 ). The search focused on words associated with digital technology, health inequities, and CLEARS (Table 2 ).

Eligibility criteria

The eligibility criteria followed the Population, Intervention, Comparison, Outcomes and Study design (PICOS) framework, recommended by the Cochrane Handbook for Systematic Reviews 69 , and provided an organising framework to list the main concepts in the search. The Population criteria included any group represented by our CLEARS framework (see above). The Intervention criteria focused on inclusive digital health strategies, which we defined as an action designed to alleviate the digital exclusion of individuals by promoting access, motivation, and/or use of information and communication technologies 2 , 3 , 4 , 5 . Articles needed to have discussed the facilitators or barriers associated with the inclusive digital health strategy (outcome criteria) to be included. This allowed the researchers to reflect on what currently worked or did not work to inform key recommendations. Only qualitative studies that provided rich in-depth experiences from CLEARS groups were included to aid our understanding of how a complex phenomenon, i.e., intersectionality, can affect digital exclusion 11 , 12 . Quantitative studies were excluded as they are designed to test a hypothesis or enumerate events or phenomena 11 , 12 , which was not aligned with the aim of this review. Only peer-reviewed articles published between 2012 and 2022 in the English language were included; this ensured only the latest advancements in digital technologies were considered.

Study selection

Results from each database were exported into EndNote (version 20.5, Clarivate, International) and duplicates removed. Remaining articles were uploaded to Rayyan (Qatar Foundation, State of Qatar) 70 , where titles, abstracts, and full-texts were screened independently by two reviewers (SW, LL, EB) to minimise bias. The lead author (SW) screened all articles, acting as a constant throughout the process. Disagreements were resolved by a third reviewer (RMA). The reasons for excluding full text articles were recorded (Fig. 1 ).

Data extraction and synthesis

The lead author (SW) developed a data-extraction sheet with the research team to extract and record specific study details, including participant demographics and a description of the inclusive digital health strategy under investigation (Supplementary Tables 5 and 6 ). Any measure used to record participants’ health literacy in the included studies, such as the Newest Vital Sign (NVS) 44 or the Health Literacy Questionnaire (HLQ) 45 , was also extracted. A quality assessment was carried out on the included studies using the Critical Appraisal Skills Programme (CASP) Qualitative Review Checklist 71 . Quality was measured by reporting the frequency of ‘yes’ (denoting the study met the criteria on the checklist) (Supplementary Tables 7 and 8 ).

The lead author (SW) performed a narrative thematic synthesis of the included studies. Firstly, the authors began by developing a preliminary synthesis of findings from included studies to identify the key strategies and list the facilitators and barriers to implementation. We then considered the factors that might explain any commonalities and differences in the successful implementation of these digital inclusive strategies across included studies. This involved exploring the directly reported verbatim quotations obtained from particular CLEARS groups and seeking to draw descriptive and explanatory conclusions around key themes 72 , 73 . All data management and analysis was carried out within N-Vivo (version 1.6.1, QSR International). Discussions with co-authors (SPS, RM, CT) were conducted at several stages throughout the analysis to discuss, refine and define themes to ensure a coherent narrative that reflected the data. Detailed descriptions and contextual material from the included studies was kept throughout the analysis to ensure that the trustworthiness was upheld 74 , 75 . Ethics approval was not required for this systematic review.

Reporting summary

Further information on research design is available in the Nature Research Reporting Summary linked to this article.

Data availability

All relevant data used for the study has been included in the manuscript and supplementary information.

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Acknowledgements

We would like to thank the social sciences librarian, Karen Crinnion, at Philip Robinson Library, Newcastle University, for her help and advice regarding the search strategy, choice of databases and search keywords for this systematic review. This work has been supported by the Early Detection of Neurodegenerative diseases (EDoN) research initiative, funded by Alzheimer’s Research UK with support from Gates Ventures and the Alzheimer’s Drug Discovery Foundation through its Diagnostic Accelerator Project. This project is also funded by the NIHR, (NIHR205190). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funder of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report. Ríona Mc Ardle is funded by the National Institute for Health Research (NIHR) (NIHR 301677) and the NIHR Newcastle Biomedical Research Centre (BRC) based at The Newcastle upon Tyne Hospital National Health Service (NHS) Foundation Trust; Newcastle University; and the Cumbria, Northumberland and Tyne and Wear (CNTW) NHS Foundation Trust. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR, NHS or the UK Department of Health and Social Care.

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Wilson, S., Tolley, C., Mc Ardle, R. et al. Recommendations to advance digital health equity: a systematic review of qualitative studies. npj Digit. Med. 7 , 173 (2024). https://doi.org/10.1038/s41746-024-01177-7

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A model of Collaborative Ethics to guide translational research from fundamental discoveries to real-world applications

by Benjamin Boettner, Harvard University

In sciences, disruptive research that is breaking new ground often raises new and not-yet-explored ethical questions. Although new scientific breakthroughs can have the power to change how we understand and live in the world, the ethical implications of technologies that will emerge based on these new insights can affect an emerging field's public acceptance and have moral implications for society at large. They can also impact the process of translating discoveries into real-world products, sometimes requiring new regulations.

Historically, ethicists—who form the branch of philosophy that is concerned with morality and studies of human conduct in relation to the self, others, and the natural world—were only given the opportunity to analyze transformative breakthroughs in the life sciences after-the-fact, when new scientific possibilities already start to impact the real world. This has often prevented the creation of crucial decision moments and course corrections before ethical controversies gained momentum and bioethicists specializing on medical, public health, animal, or environmental ethics were called upon.

"To overcome current limitations, it is crucial that the analysis process be initiated at the earliest stages when fundamental discoveries are made to clearly answer the question of what, for example, newly created biological constructs are . This first analysis is actually an explicitly philosophical one—only when it determines that an 'ethical threshold' is reached should a more ethics-focused analysis follow," said Wyss Institute Collaborative Ethics lead Jeantine Lunshof. "This analysis ensures that an ethical analysis is conducted when it is relevant and useful."

Lunshof, in her collaborative work with researchers at the Wyss Institute and Harvard Medical School (HMS) over more than 15 years, has advanced a generic model of "Collaborative Ethics." There is special need for frequent philosophical and ethical reassessment in organizations, such as the Wyss Institute, which develop new breakthrough technologies and translate them at an extremely fast pace.

To ensure this is most functional, "The Collaborative Ethics effort is also aligned with the Wyss Institute's Technology Innovation Funnel, which formalizes the journey of its cutting-edge technologies starting at the 'Idea Generation' stage when fundamental discoveries are made and first assessed for their translational potential," said Lunshof, who holds a Ph.D. and M.A. in Philosophy and Health Law. "But they can be applied to translational research in any academic environment."

Now, Lunshof and Julia Rijssenbeek, a Graduate Student at Wageningen University in the Netherlands who did a Ph.D. internship at the Wyss Institute, have published the Collaborative Ethics model in Nature Methods .

In the Wyss' Translation Innovation Funnel, potentially life-saving and changing technologies proceed through "Concept Refinement," "Technology Validation," "Technology Optimization" and "Commercialization" stages. This path is paralleled by steps the Collaborative Ethics model provides for investigating philosophically and ethically relevant implications and creating further actionable decision points.

For Collaborative Ethics to work effectively, it is essential that the early dialogue between researchers and ethicists continues through all stages of technology development, all the way to the creation of products that can be commercialized.

"It doesn't suffice that a philosopher or an ethicist occasionally reviews a research group's work as an outsider or audits it for a different department or organization. For a meaningful dialogue to happen, it is essential that they become actual members of project teams to facilitate meaningful reflections during the scientific process instead of when it has been concluded," said Rijssenbeek.

"This immensely facilitates the exchange of thoughts in both directions, philosophical and ethical innovation, as well as decision-making processes that enable responsible research and innovation towards life-changing technologies."

Lunshof's philosophical and ethical work at Harvard University began in 2006 in the lab of Wyss Institute Core Faculty member George Church, Ph.D., who at HMS pioneered the decoding and study of genomes, particularly that of the human genome, and the relatively young field of synthetic biology. Church is also the Robert Winthrop Professor of Genetics at HMS. As Church's collaborator, Lunshof became involved with the Personal Genome Project, which was begun the previous year and aimed to sequence and publicize the complete genomes and medical records of 100,000 volunteers.

Subsequently, as a Marie Sklodowska Curie International Fellow, her interest expanded into the new realities of genome engineering, the creation of chimeras from cells stemming from different organisms, and other disruptive scientific advances made in Church's lab. Her participation helped pave the way toward a more balanced public perception of the research.

Lunshof continued her work by focusing on other "hot topic" ethical areas, some of them closely related to research conceived at the Wyss Institute. She co-led the Brainstorm Project, which was part of the US National Institutes of Health BRAIN initiative neuroethics program, where she helped create an ethically recommendable path forward for neural or "brain organoids" as models for human brain development and brain disease. The Wyss Institute's CircaVent Project, led by Church, uses brain organoids to model neurological and psychiatric disorders, in the discovery of urgently needed drugs.

Another example of ethically complex technology is "biobots," tiny computer-designed living organisms with programmed behaviors built from animal or human cells. Developed by Michael Levin's group at the Wyss Institute and Tufts University in collaboration with roboticists and computer scientists at the University of Vermont, biobots do not fit into any traditional ethical category. They raise important questions regarding their identities and what the researchers' intentions and goals are. Levin is an Associate Faculty member at the Wyss Institute as well as Distinguished Professor and Vannevar Bush Chair at Tufts University's Department of Biology.

Lunshof and Rijssenbeek used these and other examples to illustrate how the Collaborative Ethics model has been successfully applied in practice. Being integrated with the research process through four defined steps, it first carries out a "Conceptual Analysis," by asking the question "what is it?"—in the case of biobots, are these novel life forms organisms, robots, or machines?

The second step, "Normative Analysis," marks the transition from general philosophy to ethics and drills into the question of whether certain research raises any ethical concerns.

The model's third step, "Applied Ethics," is similar to bioethicist's role, and applies ethical theories to assess the real-world impact of technology developments like, for example, the use of animals in research, the provenance of human biological specimens, questions of privacy and consent, the benefits and risks of new technologies such as genome editing for patients, and the justification of gain-of-function research that could lead to new antimicrobials but also result in enhanced pathogens. The question of whether a finding that can bring benefits but also carries risks of harm should be published at all to prevent any misuse is also considered here.

Finally, in the "Regulatory Science and Legal Aspects" step, researchers and ethicists guided by the Collaborative Ethics model team up with business development and technology transfer experts to analyze how a technology can be translated into real-world applications by a spin-off or through licensing by industry.

"Because science and technology development are progressing at an ever-higher speed, and are globalizing rapidly, real-time collaboration between researchers and ethicists becomes vital. It enables a learning curve and necessary adjustments in the research process, as well as the development of missing ethical approaches and the revision of ethics positions," said Lunshof, who was named a Fellow of The Kavli Foundation which supports the advancement of science and the increase of public understanding and support for scientists and their work, earlier this year.

"In their relentless pursuit of urgently needed solutions for patients and the environment, Wyss Institute researchers not only collaborate across disciplines with one another and with industrial partners scientifically, but they also make sure that they evaluate their research from a philosophical and ethical perspective—the Collaborative Ethics model is an invaluable guide to accomplish this," said Wyss Founding Director Donald Ingber, M.D., Ph.D., who is also the Judah Folkman Professor of Vascular Biology at HMS and Boston Children's Hospital, and Hansjörg Wyss Professor of Bioinspired Engineering at the Harvard John A. Paulson School of Engineering and Applied Sciences.

Journal information: Nature Methods

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• Open access
• Published: 25 June 2024

Qualitative study on the perception of good death in patients with end-stage cancer in oncology nurses

• Wei-dan Wu 1 , 2 , 3   na1 ,
• Yi Wang 1 , 2 , 3   na1 ,
• Xin-yu Fu 4   na1 ,
• Jin-hua Zhang 1 ,
• Chen-yang Zhang 4 ,
• Xin-Li Mao 1 , 2 , 3 &
• Shao-wei Li 1 , 2 , 3  

BMC Nursing volume  23 , Article number:  431 ( 2024 ) Cite this article

151 Accesses

Metrics details

To explore the perception of good death of patients with end-stage cancer by nurses in the oncology department.

In the study we used a phenomenological approach and semi-structured interviews. A total of 11 nurses from the oncology department of a Grade A hospital in Taizhou were interviewed on the cognition of good death from July 1 to September 30, 2022. Colaizzi’s analysis method was used to analyse the interview data. This study followed the consolidated criteria for reporting qualitative research (COREQ).

Four themes were identified: a strong sense of responsibility and mission; To sustain hope and faith; The important role of family members; Improve patients’ quality of life.

The nurses in the department of oncology have a low level of knowledge about the “good death”, and the correct understanding and view of the “good death” is the premise of the realization of " good death”. The ability of nursing staff to improve the “good death”, attention, and meet the needs and wishes of individuals and families, is the guarantee of the realization of “good death”.

Peer Review reports

Introduction

The 2020 Global Cancer Statistics, published by the American Cancer Society shows that there were 10 million cancer deaths worldwide in 2020, and the global cancer burden is projected to reach 28.4 million by 2040, a 47% increase over 2020 [ 1 ]. Our country leads the world in cancer incidence and mortality [ 1 ], and the health damage caused by cancer is almost twice the world average [ 2 , 3 ].

Patients with end-stage cancer are defined as those who have no hope of a cure in modern medicine and are expected to survive for 3–6 months [ 4 , 5 ]. The terminal cancer patient’s condition can not be reversed, and has not yet effectively alleviated the pain, and the use of life support measures such as breathing machines to some extent prolonged the pain, resulting in patients can not die in comfort and dignity [ 6 ]. Death represents a significant and inevitable stage in the cycle of life, marking its final chapter for all living beings. It is a profound and crucial period that holds tremendous significance in the grand scheme of existence [ 7 ]. Hospice care is a holistic approach aimed at addressing the physical, psychosocial, and spiritual needs of individuals with a terminal illness and their family members. It provides comprehensive support and services to ensure comfort, dignity, and quality of life during this challenging time [ 8 ]. There is substantial evidence demonstrating the positive impacts of hospice care. It has been shown to enhance the quality of end-of-life (EoL) care, reduce medical costs, align with individuals’ preferences for comfort-focused care, and minimize the use of burdensome therapies. These findings support the value and effectiveness of hospice care in providing appropriate and compassionate support to patients and their families during the terminal stages of illness [ 9 , 10 ].

Hospice care in China is still in its early stages compared to certain Western countries. Efforts are being made to expand access to hospice services, raise awareness about the benefits of palliative care, and improve the quality of care provided to individuals with life-limiting illnesses in China [ 11 ]. As the concept of “eugenics” and “optimal parenting” gains popularity, the idea of a “good death” is gradually being brought to the forefront. It not only reflects the respect for life but also signifies the progress of society and civilization. The hospice concept was introduced in China in the 1980s. The concept and characteristics of a “good death” originated from early end-of-life care, with the ultimate goal of advocating for people’s support in the field of end-of-life care and drawing attention to the well-being of terminally ill patients. In 1998, Emanuel et al. proposed the framework for a good death, providing a comprehensive explanation of the multidimensional personal experience encompassed by death. Researchers divided the process of death into four key components: the inherent characteristics of the patient, the variable factors within the patient’s experience, the interventions by the healthcare system, and the outcomes. A “good death” can be described as one that occurs without the knowledge of the exact time of death, enables the individual to bid farewell to loved ones, avoids unnecessary interventions, allows the person to have some control over the place of death, minimizes distress and suffering, respects the patient’s and their family’s wishes, and aligns reasonably with clinical, cultural, and ethical standards. This comprehensive definition encompasses multiple aspects that contribute to a positive and meaningful end-of-life experience for both the individual and their loved ones [ 12 , 13 ].

Across different cultures, certain attributes of a good death are often emphasized. These include maintaining a pain-free status through effective pain management, providing emotional comfort and support to the person and their loved ones, and ensuring that individuals are prepared for the inevitability of death through open communication and appropriate end-of-life planning. These attributes are recognized as important factors in promoting a more peaceful and dignified transition at the end of life, regardless of cultural backgrounds [ 14 , 15 ]. Nurses who have a good understanding of the concept of a “good death” are better equipped to provide more effective end-of-life care to patients [ 16 ]. When providing care to individuals who are dying, nurses may experience a range of emotions, including anger, despair, distress, and guilt [ 17 , 18 ]. Understanding the concept of a good death and accepting the inevitability of death can aid nurses in coping with these complex emotions. However, it is worth noting that the acceptance of hospice care in Chinese society has been relatively slow, despite its introduction to mainland China as early as 1988 [ 19 ]. With the aging population, there is an increasing demand for end-of-life care. To measure this demand, an index system can be used, taking into account factors such as the burden caused by diseases, the dependency ratio of the elderly population, and the speed of aging [ 20 ]. In China, the objective demand for end-of-life care is indeed increasing. However, traditional cultural influences often make discussions about death taboo, and the concept of a “good death” is not widely accepted by most people [ 19 ].

Good Death (GD) is one of the core objectives of hospice care [ 21 , 22 ]. This study conducted in-depth interviews with nurses in the department of oncology to understand the current implementation of good death technology, the cognitive status of medical staff on good death, and the clinical coping strategies for patients with end-stage cancer, to determine the cognitive deficiencies of medical staff in good death and the aspects of continuous learning. The study mentioned focused on oncology inpatient unit nurses because they are frequently involved in providing end-of-life care. As patients with cancer often face end-of-life issues, it is important to understand the experiences and perspectives of nurses working in this specific setting.

Study design

We used phenomenological qualitative research and face-to-face semi-structured interviews to explore the perception of good death of patients with end-stage cancer by nurses in the oncology department in Taizhou Hospital of Zhejiang Province from July 1 to September 30, 2022. In qualitative research, phenomenological methods focus on describing common experiences shared by the entirepopulation, which also helps researchers to engage with participants from an in-depth perspective and to understand their experiences. Our research team has extensive experience in qualitative research.

Participants and ethical considerations

Purposive sampling was employed to select the participants who were eligible and could provide rich information about the research question.

Inclusion criteria: (1) Nurses with a license to practice nursing; (2) Oncology nurses with a minimum of 6 months of clinical nursing experience; (3) Providing care services to terminally ill cancer patients, and have work experience in hospice; (4) Ability to clearly articulate their views; (5) Providing informed consent and voluntary participation in this study. Exclusion criteria: (1) Nurses who withdrew from the interview process; (2) Nurses who were on leave or engaged in training, resulting in an absence from their position for more than 3 months; (3) Nurses who were unwilling to discuss their experiences in caring for terminally ill cancer patients.

In this study, the report will replace each participant with a code, and the interviewee’s identity, contact information will not be disclosed to others. Sound content is also used only in this study. The study was reviewed and approved by the Ethics Committee of Taizhou Hospital, Zhejiang Province, China (approval number: K20220789).

The qualitative data collection method employed for this study involved semi-structured, face-to-face interviews. Prior to the start of each interview, all nurses were provided with written informed consent to participate in the research. All interviews were digitally recorded, assigned pseudonyms, and transcribed verbatim. We took measures to ensure that the participants understood the purpose and process of the study, and we emphasized the privacy of the interview environment and the confidentiality of the data. The interviews will take place within the confines of the hospital’s designated conversational chambers, ensuring utmost privacy for the participants. Saturation was considered to be reached when no new themes emerged from the inductive content analysis. In total, we conducted interviews with 11 members of the oncology nursing team (See Table  1 ).

Data collection

During the interview, subjects were also given the opportunity to read the consent form, confirm understanding, and ask questions. Verbal consent was obtained to preserve the anonymity of the subjects. During the interviews, participants were offered explanations for any inquiries they had. Additionally, participants had the option to refuse further interviews and withdraw from the study for any reason. In addition, two oncology nurses were selected for a pre-interview prior to data collection to ensure the clarity of the questions and to identify any potential problems. The data from preliminary interviews was not included in this study but was utilized to modify the interview structure based on the preliminary findings. The preinterviews were treated as tests and were excluded from the analysis. The final interview used in this study included the items are listed in Table  2 . Interviews were conducted in a quiet consultation room at the hospital between July 1 and September 30, 2022. Each person was interviewed one time, and each interview lasted approximately 30–50 min. All the interviews were conducted by a nurse with master who was trained in qualitative research. A research assistant played an auxiliary role which included recording the interviews.

The investigator audio recorded with permission, and participants’ responses, including nonverbal cues and body language during the interviews, were noted. The results will be returned to each participant within 24 h of each interview, to verify the interview details, thus ensuring the accuracy and credibility of the analysis. Before this interview, investigators were trained in interview and communication skills, including effective listening and giving positive feedback, establishing good relationships with interviewees, maintaining eye contact, not interrupting interviewees, not judging their views, etc.

Data analysis

Audio recordings were transcribed verbatim and checked for accuracy by repeated listening within 24 h of the interviews. After the interview, the data were analysed separately and immediately by two researchers with skilled analysis experience. Interview data was analysed using Nvivo12.0, a computer-assisted qualitative data management software. Colaizzi’s phenomenological seven-stepmethod was used for data analysis to complete theextraction of themes and sub-themes regarding the perception of good death of patients with end-stage cancer among oncology nurses (see Table  3 ). Any disagreement between researchers was resolved by making decisions through discussion until a consensus was reached. The final transcribed data, as well as the extracted themesand sub-themes, were sent to the participants simultaneously, and all participants agreed to be contacted again. This study met the criteria of Consolidated Criteria for Reporting Qualitative Studies (COREQ).

Rigor and trustworthiness

To ensure the study’s dependability, the methods and analyses used were described in detail. The study interviewer was a master’s degree student in nursing. The interviewer received systematic qualitative training to master qualitative research methods, was experienced in oncology practices, and established a good relationship with the participants before the interviews commenced. This facilitated the acquisition of real information. The researcher maintained a neutral attitude during the interview, did not lead or hint, did not interrupt the interviewee at will, and only asked timely follow-up questions, rhetorical questions, and clarifications until no new information emerged. Therefore, credibility was ensured. The collection, analysis, and interpretation of data were continually reviewed and detailed to ensure its dependability. The data extracted from the survey results were described in detail to achieve confirmability. Regarding transferability, this study described in detail the inclusion criteria, exclusion criteria, and demographic characteristics involved. Simultaneously, the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used to report the findings (See Appendix I for details).

Characteristics of the 11 participants are shown in Table  1 . All eleven participants were female. The shortest term of employment as a Registered Nurse was one and a half years, and the longest was 17 years (Fig.  1 ). Four distinct themes emerged from analysis of the interview data: (1) A strong sense of responsibility and mission; (2) Sustaining hope and faith; (3) The important role of family members; and (4) Improving patients’ quality of life. Each theme included three–four subthemes (see Table  4 ).

A visual analysis of the working years of the 11 participants included

Theme one: a strong sense of responsibility and mission

Most respondents said that when they realized that a patient was dying, their presence was more important than ever, triggering a strong sense of responsibility and mission. “End-stage patients will leave at any time, when in the dying patient evaluation period, I will often ward, observe the patient’s vital signs, keep the comfort of family members, at this time of the patients and family members are in great need of medical personnel to accompany and support, especially families, at this point the heart is very fragile, especially need a psychological support.” (A5, female, 28 y.o) “For the families of the patients whose death is imminent, I will tell them to tell the patients as soon as possible if there is anything they need to tell them. If there is anything that needs the help of our doctors and nurses, they can tell us at any time. We will do our best to help.” (A7, female, 39 y.o).

Theme two: sustaining hope and faith

Patient confidentiality.

Under the influence of traditional Chinese culture, when patients enter the terminal stage of cancer, considering the patients’ physical and psychological conditions and psychological acceptance of the disease, medical staff needs to inform the patients’ families and seek treatment advice, whether to conceal the true condition of patients [ 23 ], whether to continue treatment or give up treatment and so on so that the whole family is faced with a major choice. In this interview, the interviewees discussed their views on the confidentiality of the patient’s condition from the point of view of good death, and the nurses had better cognition of the confidentiality of the patient’s condition. “We have a lot of family members who are concerned about the patient’s ability to cope. They tell us in advance not to discuss the patient’s condition in front of the patient, and they ask us to keep it confidential when the patient asks. We usually comply with their request at this time. “(A9, female, 32 y.o).

“A lot of family members ask for the patient’s condition to be kept confidential. Our doctors and nurses usually communicate on how to settle accounts with patients in a unified way. “(A3, female, 42 y.o).

Moral support

Patients and family members experience a complex range of emotions after being informed of a cancer diagnosis, and how to make patients and family members accept the reality that cancer is incurable is a challenge for healthcare professionals [ 24 , 25 , 26 , 27 ]. In the interview, the interviewees mentioned the importance of spiritual support for cancer families. “Many patients have no faith. I have seen many patients who have been in a period of anger after learning that they have cancer. They think why they are so unlucky. They have this disease and have no interest in doing anything. They think that the world is unfair and cruel to them. If we can help them to seek their faith, such as religion, it may have some spiritual comfort for them. " (A8, female, 37 y.o) “I met a retired civil servant in my work who, after learning that he had cancer, organized his years of Work Records and compiled a memoir by year. I think he would review his experiences and values when he read these memoirs, and his heart would be at peace for a while. I got an idea from him that I could use a similar approach to help other patients and their families find value in their lives and live more peacefully in the final stages of their lives. " (A6, female, 29 y.o).

Theme three: the important role of family members

The accompanying role of family members.

Influenced by our traditional culture, most terminal cancer patients want their closest family members to be with them at the end of their lives. Most of the interviewees indicated that the accompany of family members is a comfort to the patients, which makes them feel that they are loved and meets their psychological needs [ 28 ]. “Patients at this stage are more psychologically vulnerable than those with other diseases. At the end of their lives, the company of their family members is a great psychological comfort to them. Although I can’t have a lot of company during an epidemic, I usually ask one of the family members to stay here to accompany the patient. “(A2, female, 36 y.o) “At this time, the family member will stay by the patient’s side. Even if they don’t do anything or say anything, the patient will feel that they are cared for by someone and feel that they are still loved. “(A10, female, 30 y.o).

The communication role of family members

Under the influence of the Chinese traditional concept of life and death, there are still some difficulties in implementing and promoting euthanasia, especially for cancer patients, whose families often choose to hide the true situation from them, medical staff can only discuss it with their families [ 29 , 30 ]. The nurses mentioned that most of the family members lack the methods of psychological care and the experience of taking care of terminal cancer patients, do not know the psychological needs of the terminal cancer patients, and can not do the psychological work of the patients in time and effectively. “During the work process, some patients’ psychological needs are very high, but the family members accompanying them don’t understand the patients’ psychological needs. The two of them can’t chat together and have nothing to say for a whole day. “(A4, female, 26 y.o).

The caregiving role of family members

Family members accompany patients for a long time, know the daily living habits of patients best, can provide wholehearted care, and can timely detect and feedback on the symptoms of patients and changes in their condition, the care of family members for patients is an important component of the medical staff to evaluate the patient’s good death. “Many patients at this stage due to pain and other effects, the ability to move limited, and many daily activities need family care.” (A11, female, 25 y.o) “Terminally ill patients, ECG monitoring everyday detection of vital signs, we usually also one hour patrol, family members beside can pay attention to the patient’s vital signs changes. " (A1, female, 33 y.o).

Theme four: improving patients’ quality of life

Symptom control.

Most interviewees believed that end-stage patients should focus on symptom control and pain relief. “In the end, the most uncomfortable thing for many patients is the cancer pain, which makes them unable to move when they turn over. Taking painkillers and injecting painkillers can no longer control the pain. If it can reduce their pain, it is very meaningful for good death.” (A8, female, 37 y.o) “When patients enter the terminal stage, some other treatments are meaningless and try not to disturb them, so that patients can quietly go through the final stage of life.” (A7, female, 39 y.o).

Palliative care

During the interview, most interviewees expressed that they should try their best to meet the reasonable requirements of patients, reduce invasive operations on patients, listen to the voice of patients and their families more, improve the comfort level of patients, and give more tolerance and understanding to patients and their families. “During the epidemic, patients and their families are required to reduce going out and order meals in the department. However, patients with advanced stage do have a poor appetite. Some of their families will prepare meals and send them to the first floor of the hospital building. (A9, female, 32 y.o) “When I perform a blood gas analysis or an infusion on this type of patient, if I feel that I cannot successfully puncture the vein on the first try, I will seek assistance from other colleagues to avoid subjecting the patient to the pain of a second puncture.” (A1, female, 33 y.o).

The aim of this study was to explore the perceptions of oncology nurses regarding end-of-life care for patients with advanced-stage cancer in China. The interviews conducted in this study revealed that oncology nurses have generated numerous ideas and understandings about end-of-life care for patients. This demonstrates their strong concern for end-of-life care issues and their utmost efforts to help patients achieve a good death. The cognition of healthcare professionals regarding a good death is influenced by traditional cultural factors, and their ability to assist patients in achieving a good death is also limited by their level of knowledge and skills.

In contemporary times, the majority of individuals pass away within the confines of a hospital setting, necessitating the presence of nurses during their final days. As patients approach the end of their lives, nurses provide companionship and support throughout this significant transition [ 31 ]. The attitudes exhibited by nurses play a pivotal role in shaping the quality of end-of-life care. A positive attitude towards death can signify that nurses possess a more effective adaptation to the practices related to end-of-life care. This also implies that they are better equipped to provide compassionate and supportive care to patients during this sensitive stage [ 32 , 33 ]. By fostering positive attitudes towards the dying, nurses can overcome their own fears of death. This allows them to create a safe and supportive environment where patients can experience a peaceful and dignified process of dying. Such an atmosphere fosters a sense of respect and enables patients to feel valued as individuals during this vulnerable time [ 34 ]. The research conducted by Ceyhan et al. revealed a positive correlation between the perception of a good death and the attitudes of intensive care nurses towards providing care for patients in their final moments. These nurses exhibited favorable attitudes towards end-of-life care and possessed a strong belief in the concept of a good death. The study suggests that nurses in the intensive care setting are more inclined to embrace and prioritize the well-being and comfort of dying patients [ 35 ].

The correct understanding and view of “good death” is the premise to realize “good death”

This is similar to the findings of Hilal Türkben Polat and others [ 34 ]. The concept of death often evokes negative emotions in patients, patient relatives, and nurses. Consequently, it is typically avoided and sometimes even considered a taboo in certain regions. Patients in Eastern countries encounter unique challenges when it comes to preparing for death. This is primarily due to lower frequencies of receiving bad news, such as diagnoses and prognoses, as well as cultural practices that discourage discussions about death. Moreover, stronger taboos surrounding death discussions exist in Eastern countries compared to Western countries [ 36 ]. In western countries, the disclosure of diagnoses is regarded as a fundamental patient right and an essential practice. Within the western ethical tradition, there is significant emphasis on providing patients with truthful information. Medical practitioners have a responsibility to respond to patients’ questions regarding their diagnosis in an honest and forthright manner [ 37 ].

Under the influence of Eastern philosophy, the challenges related to diagnosis disclosure are further magnified in Eastern countries. Traditional Eastern philosophical beliefs, such as the emphasis on harmony, collective well-being, and the idea of protecting patients from distress, can create barriers to open and direct communication about diagnoses. Balancing the values of truthfulness and preserving emotional well-being becomes a particular challenge within the Eastern cultural context [ 38 ]. In China, it is common for family members to withhold cancer diagnoses from the patient, as they believe it may help protect the patient from potential emotional distress and depression. This practice stems from a desire to shield loved ones from the potentially negative impact of such news. However, it is important to note that this approach may differ from the Western emphasis on patient autonomy and the right to access complete information about one’s own health condition [ 26 ]. As highlighted by Jiang Yu et al., the decision to withhold cancer diagnoses in China is often a collective consensus among family members. This collective decision-making process is influenced by cultural norms, where the family plays a central role in matters of health and well-being. In such cases, the family members believe that keeping the diagnosis concealed is in the best interest of the patient, aiming to maintain emotional well-being and alleviate potential distress. It is important to recognize and respect these cultural differences and the role of familial decision-making in the context of healthcare practices [ 39 ].

The concept of “Avoid death” in our traditional culture will affect the expression of the needs of terminal cancer patients. Compared with patients, their families have more difficulty accepting the concept of good death, which they believe means giving up treatment, waiting for death, and being difficult to accept psychologically [ 40 ]. The medical personnel should strengthen the family members’ correct understanding of good death and make them realize the importance of respecting the patient’s right to know and independent decision-making to realize good death, it is suggested that family decision-making should be gradually changed into a way of discussion between patients and their families, to lighten the psychological burden of both sides and let patients realize their wishes. Fully pay attention to the needs of end-stage patients and their families, and take targeted measures to help patients to achieve good death [ 41 ].

The good death ability of nursing staff needs to be improved

The attitude of professional nurses to death greatly influences the treatment decision of terminal cancer patients and affects the quality of patients’ death. The more skilled the nursing skills, the better the communication skills, and the terminal attitude of terminal cancer patients, the better the quality of life of the patients.

Based on the interview results, it is evident that nurses have insufficient competency in implementing end-of-life care. They make efforts to help patients manage clinical symptoms and enhance the caregiving abilities of family members through their own capabilities, aiming to assist patients in a better end-of-life experience. However, the nurses’ level of competence directly affects the patient’s experience of end-of-life care. They have limited opportunities for formal end-of-life care training and education, resulting in a relative lack of knowledge in this area. The end-of-life experience is unique and personal for each individual, with most people desiring to avoid pain during this period, while others may prioritize prolonging life at any cost. End-of-life care may be provided by doctors, physicians, nurses, emergency personnel, or volunteers. However, nurses play a significant role and bear primary responsibilities in this regard [ 14 ]. A study indicated that nurses, as moral agents, possess a profound commitment to upholding the moral integrity of end-of-life care, particularly when it involves assisted death. This suggests that nurses play a crucial role in ensuring that ethical principles and values are upheld throughout the process. Their dedication to promoting the well-being and dignity of patients in these complex situations highlights their ethical and moral responsibility in providing compassionate and supportive end-of-life care [ 15 ]. In addition, another research study highlighted the indispensable role of nurses in providing compassionate care to patients in their final stages of life [ 16 ]. Nurses are entrusted with the responsibility to deliver exceptional care to terminally ill patients and their families. Insufficient knowledge has been identified as a major obstacle in providing optimal care for individuals nearing the end of their lives [ 18 ]. A lack of education and training in end-of-life care has been recognized as a significant contributing factor to insufficient recognition and management of symptoms, as well as challenges in effective communication with patients and their families [ 17 ].

At present, the level of knowledge and skills of our palliative care is not high, and they lack the skills of psychological, social, and spiritual support and are difficult to implement skillfully [ 42 ]. The limited awareness of hospice care in Mainland China can be attributed to various factors, such as the absence of systematic policy support, limited public educational campaigns, and the lack of comprehensive academic and practical curricula and training programs on hospice care. These factors have collectively contributed to the insufficient understanding and recognition of hospice care among the general public and healthcare professionals in Mainland China [ 43 ].

Healthcare professionals need professional knowledge and skills should use a variety of ways to educate professionals, and guide them not only care about patient survival rate, and quality of life, at the same time, we should also pay attention to the physical and psychological needs of incurable patients [ 44 ], educate patients with end-stage cancer and their families, provide a suitable environment and the necessary help, improve the quality of patient’s death, and meeting the needs of patients who are nearing the end of life. By enhancing the medical curriculum to include comprehensive education on hospice care and establishing hospice care programs within hospitals, opportunities can be increased for physicians, nurses, patients, and their family members to enhance their awareness and utilization of hospice care services. This would ultimately contribute to improving end-of-life care and ensuring that individuals receive the support and comfort they need during this crucial time [ 45 ]. In addition, the whole society should widely carry out life education and Death Education, guide people to look at life and death correctly, a planned, leisurely life with, a good start, and a good finish.

Paying attention to and meeting the needs and wishes of individuals and families is the guarantee of achieving “good death”

In the Chinese cultural context, there is a strong emphasis on the centrality of the family and social relationships [ 12 ]. Family dynamics are considered crucial for a good death, and Asian populations, influenced by Confucian teachings, place great importance on the cohesion of the family and the significance of familial relationships [ 46 ]. Nurses take care of terminal cancer patients for a long time, and they are familiar with the patients and their families. Clinical nurses should play an active role as a good communication bridge, which can help them communicate their needs or promote communication among themselves, at the same time, teach family members to play a better role in family support to meet the needs of patients with end-stage cancer to receive family warmth and care [ 47 , 48 , 49 ].

This study still has some limitations. Primarily, the participants were confined exclusively to a solitary tertiary hospital, thereby potentially limiting the generalizability of the findings. To augment representativeness, future investigations could contemplate sampling participants from nontertiary hospitals. Furthermore, the inclusion of solely female nurses in the analysis neglects male nurses, thus introducing a predisposed bias into the results. Within the targeted population of this inquiry, the dearth of male nurses serving escalates the complexity of ameliorating this bias. Secondly, the study lacked the amalgamation of quantitative research, impeding the determination of specific domains and the magnitude of improvement required in nurses’ competencies. To rectify this, future research endeavors should endeavor to broaden the sample size and scope, employing quantitative research methods to scrutinize the precise cognitive facets and knowledge modules necessitating enhancement in nurses. Additionally, there exists a demand for further exploration of culturally tailored competency models in the Chinese context. This would assist in confronting and resolving the challenges impeding the current competency development process. Furthermore, interviews were conducted in Chinese and subsequently analyzed and translated into English. Despite efforts by professional English editors to guarantee accurate translation, there remains a small risk that the translation process may have influenced the study outcomes. Lastly, further exploration is still required to ascertain the appropriate cultural backdrop of our model, and to refine and address the prevailing complications encountered in the euthanasia procedure.

This study explored the general cognition of nurses in the oncology department about good death from the perspective of Chinese nurses. The results showed that nurses in the oncology department had a low level of knowledge about good death, and had a correct understanding and view of “good death”. Indeed, strengthening hospice education is crucial to improve public awareness and acceptance of hospice care, leading to better quality end-of-life care. To enhance public education on hospice care, it is essential to develop and implement culturally appropriate educational programs systematically. By tailoring these programs to the specific cultural context, we can effectively address the barriers and taboos surrounding discussions about death and promote understanding and acceptance of hospice care [ 50 ]. It is the premise of realizing “good death”, and the ability of nurses should be improved. It is the guarantee of realizing “good death” to pay attention to and satisfy the needs and wishes of individuals and families.

Data availability

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

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This work was supported in part by Medical Science and Technology Project of Zhejiang Province (2024KY1788), Major Research Program of Taizhou Enze Medical Center Grant (19EZZDA2), Program of Taizhou Enze Medical Center Grant (22EZD06), Open Project Program of Key Laboratory of Minimally Invasive Techniques & Rapid Rehabilitation of Digestive System Tumor of Zhejiang Province (21SZDSYS01), Program of Taizhou Science and Technology Grant (23ywa33).

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Wei-dan Wu, Yi Wang and Xin-yu Fu contributed equally to this work.

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Department of Gastroenterology, Taizhou Hospital of Zhejiang Province affiliated to Wenzhou Medical University, Linhai, Zhejiang Province, China

Wei-dan Wu, Yi Wang, Jin-hua Zhang, Xin-Li Mao & Shao-wei Li

Key Laboratory of Minimally Invasive Techniques & Rapid Rehabilitation of Digestive System Tumor of Zhejiang Province, Taizhou Hospital of Zhejiang Province affiliated to Wenzhou Medical University, Linhai, Zhejiang Province, China

Wei-dan Wu, Yi Wang, Xin-Li Mao & Shao-wei Li

Institute of Digestive Disease, Taizhou Hospital of Zhejiang Province Affiliated to Wenzhou Medical University, Linhai, Zhejiang Province, China

Taizhou Hospital of Zhejiang Province affiliated to Wenzhou Medical University, Linhai, Zhejiang Province, China

Xin-yu Fu & Chen-yang Zhang

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W-D W, W Y, X-L M and S-W L identified the research topic and designed the research process; W-D W, W Y, X-Y F were involved in writing the article; W-D W, J-H Z, X-Y F, W Y and C-Y Z were involved in interviewing and summarizing; W-D W, X-Y F, X-L M and S-W L were involved in correcting and revising the article.

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Wu, Wd., Wang, Y., Fu, Xy. et al. Qualitative study on the perception of good death in patients with end-stage cancer in oncology nurses. BMC Nurs 23 , 431 (2024). https://doi.org/10.1186/s12912-024-02081-x

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Exploring medical students' experience of the learning environment: a mixed methods study in Saudi medical college

• Mohammed Almansour 1 ,
• Noura Abouammoh 2 ,
• Reem Bin Idris 3 ,
• Omar Abdullatif Alsuliman 3 ,
• Renad Abdulrahman Alhomaidi 3 ,
• Mohammed Hamad Alhumud 3 &
• Hani A. Alghamdi 2  

BMC Medical Education volume  24 , Article number:  723 ( 2024 ) Cite this article

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In medical education, the learning environment (LE) significantly impacts students' professionalism and academic performance. Positive LE perceptions are linked to better academic outcomes. Our study, which was conducted 15 years after curriculum reform at King Saud University's College of Medicine, aimed to explore students' perspectives on their LE and identify areas for improvement. By understanding their experiences, we strive to enhance LE and promote academic success.

This mixed-method study employed an explanatory sequential approach in which a cross-sectional analytical survey phase was collected first using the Johns Hopkins Learning Environment Scale (JHLES), followed by qualitative focus groups. Findings from quantitative and qualitative methods were integrated using joint display.

A total of 653 medical students completed the JHLES. The total average score was 81 out of 140 (16.8), and the average subscale scores ranged from 2.27 (0.95) for inclusion and safety to 3.37 (0.91) for community of peers. The qualitative approach encompasses both inductive and deductive analyses, identifying overarching themes comprising proudness, high expectations and competition, and views about the curriculum. The integration of results emphasizes the need for continued efforts to create a supportive and inclusive LE that positively influences students' experiences and academic success.

This research offers valuable insights for educational institutions seeking to enhance medical education quality and support systems. Recommendations include faculty development, the cultivation of supportive environments, curriculum revision, improved mentorship programs, and initiatives to promote inclusivity and gender equity. Future research should explore longitudinal and comparative studies, innovative mixed methods approaches, and interventions to further optimize medical education experiences. Overall, this study contributes to the ongoing dialog on medical education, offering a nuanced understanding of the complex factors influencing students' perceptions and suggesting actionable strategies for improvement.

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The learning environment of medical students plays a significant role in shaping qualified, well-rounded physicians. It can also impact students' professionalism, ethics, and morals. As these students graduate and begin their professional practice, their competency can be a direct reflection of the medical institutes from which they graduated. The learning environment (LE) is a term used to describe the physical, cultural, and psychosocial climate in which learning takes place [ 1 ]. Students' skills, knowledge, and attitudes are influenced by the teaching and learning environment of their educational institutes. The interactions they have with their peers, faculty members, and administrators play a role in their learning environment. The curriculum that is taught to students is part of this environment, and the curriculum's design is a vital component [ 2 ].

The impact of LE on the academic performance of medical students is significant. Therefore, it is crucial to provide a supportive environment that positively influences students' perceptions of their LE. Research has consistently shown that students who perceive their LE to be positive and supportive are more likely to perform well academically [ 3 ]. Conversely, students who perceive their LE to be negative may experience adverse effects on their academic performance [ 3 ].

A student-centered curriculum of outstanding standards must be provided, and evaluation of the educational setting at both academic and clinical sites is essential [ 4 ]. King Saud University's College of Medicine program is seven years long, starting with a preparatory year, followed by two basic sciences (preclinical) years, then three clinical-practice years, and a one-year internship. The program employs a combination of problem-based learning and interactive lecturing to teach medical and healthcare-related sciences, emphasizing critical thinking and self-directed learning. Clinical training programs provide hands-on experience, with the goal of producing skilled and compassionate healthcare professionals.

Two studies were conducted at the College of Medicine at King Saud University (COM-KSU). The first study was conducted in 2008, prior to the college's curriculum reform in 2009, which transitioned from a traditional to a system-oriented hybrid curriculum [ 5 ]. Researchers utilized the Dundee Ready Educational Environment Measure (DREEM) scale to evaluate the learning environment (LE), and the results indicated that first-year students had significantly higher scores than other students [ 5 ]. Additionally, preclinical students had significantly greater scores than did clinical students, and gender was not a statistically significant factor [ 5 ].

The second study was conducted in 2014, where fifth-year medical students were evaluated using the DREEM scale to assess their perception of the LE [ 6 ]. The study revealed that the students' perception of the educational environment was satisfactory [ 6 ].

The Johns Hopkins Learning Environment Scale (JHLES) was created by the Johns Hopkins University School of Medicine to evaluate the quality of the learning environment for residents and medical students [ 7 ]. The 28-item scale helps medical educators identify areas of improvement by assessing seven factors or subscales, comprising community of peers, faculty relationships, academic climate, meaningful engagement, mentoring, inclusion and safety, and physical space [ 7 ].

The aim of our study was to investigate the perceptions of medical students regarding their LE at the COM-KSU 15 years after the curriculum was reformed. We seek to understand the experiences of students in this particular LE and gain insights into the factors that influence their perceptions of the LE. By exploring the students' perspectives, we aim to identify areas where improvements can be made to enhance LE and ensure that it is conducive to learning and promotes academic success.

Aim, design, and setting

This mixed-method study aimed to investigate students’ perceptions of the LE at COM-KSU 15 year proceeding a curriculum change, followed by an exploration of their perspectives aiming to identify areas of improvement of the LE. This study employed an explanatory sequential approach in which a cross-sectional analytical survey phase collected first, followed by qualitative focus groups. The research was carried out between November 2022 and March 2023 within the College of Medicine at King Saud University (COM-KSU), which is the pioneering medical education institution in the Kingdom of Saudi Arabia and is located in the capital city of Riyadh.

Participants and sampling

All the COM-KSU undergraduate students and interns were invited to participate in the study, with a total of 1471 students and 268 interns. The total number of enumeration techniques over the period of the study was used. Convenient sampling was employed in this study. The decision to employ convenient sampling was based on practical considerations of the accessibility and availability of participants. Consequently, a total of 653 individuals voluntarily participated in the first phase of the study, and the research team initiated the participant recruitment process by extending invitations to all undergraduate students and interns enrolled in the COM-KSU. The invitations were disseminated via multiple channels, including email, WhatsApp groups, and personal visits to each classroom within the college.

The data collection process comprised two distinct online surveys, each serving a specific purpose. The first survey focused on the quantitative phase and included questions related to demographic information and the Johns Hopkins Learning Environment Scale (JHLES). The second survey, designed for registration in the qualitative phase, included demographic inquiries along with a means of contact and the provision of available time slots. Subsequently, the research team communicated with the registered participants and arranged for focused group discussions (FGDs) to be conducted. Two FGDs were needed (5 and 7 participants) based on the theory of data saturation. Each FGD lasted approximately 70 min and was held at the College of Medicine. The discussions were facilitated by one of the authors, who is a qualitative methodologist and a faculty member at the same college, and the participants were comfortable discussing negative views as they were discussing positive views.

In the quantitative study phase, an online survey encompassing various components was developed. This survey collected demographic data, including information on gender, age, academic year, GPA, employment status, marital status, and residence type. Additionally, the Johns Hopkins Learning Environment Scale (JHLES), a validated tool used for assessing undergraduate medical school learning environments, was used. The JHLES consists of 28 items distributed across seven domains, and its use for this study was conducted without the need for direct permission, as it is publicly available.

In the qualitative study phase, students and interns were actively engaged in Focus Group Discussions (FGDs), aimed at eliciting their perspectives on the learning environment (LE). The FGDs employed a topic guide comprising open-ended questions aligned with the LE domains delineated by the JHLES. These questions included inquiries such as "How would you characterize your relationships with your peers?" and "To what extent does the college environment support collaboration with fellow students from the same college?" Furthermore, participants were asked to share their opinions regarding the faculty and provide insights into their perceptions of the curriculum. The FGDs were complemented with probing questions and follow-up queries to delve deeper into participants' experiences and perspectives.

Statistical analysis

For the first phase in this study, sociodemographic data were presented using descriptive statistics. The mean and standard deviation (SD) for the total score and the seven domains of the JHLES were calculated. Cross-tabulation was used to explore the relationships between the JHLES scores and the sociodemographic variables, and tests of significance through chi-square tests and ANOVA were performed. All analyses were performed using R (version 4.2.2), [ 8 ].

Qualitative data collection

The questions in the topic guide included probing questions and encompassed domains and questions from the JHLES. As open-ended questions were used to collect data, themes included deductive and inductive analysis. Inductive analysis was based on a priori themes based on the JHLES domains.

Qualitative analysis

Thematic analysis was adopted for qualitative analysis. This approach was proposed by Ritchie and Spencer (1994) to be helpful in providing a sequential structure for data analysis. This was conducted using NVivo software version 11.4.2. Using software increases the efficiency of data organization and retrieval. Familiarization, descriptive coding, basic analysis, and interpretation are the steps followed in the data analysis, and quotes from the participants were used to support the themes. Analyzing the data and identifying common descriptive themes were tasks shared with the team. The team agreed on a coding frame. The analysis was conducted independently, and the results are presented in comparison to the quantitative findings in Table  5 .

Mixed methods integration

Findings from quantitative and qualitative methods were integrated using joint display. The outcomes of the JHLES and FGDs were compared side-by-side. Integrating findings can create a holistic understanding of the learning environment of the College of Medicine, leading to a conclusion where the whole is greater than the sum of its parts.

Joint display of the data provided visual means of presenting qualitative and quantitative findings granting the ability to associate reasoning with different item score. Qualitative findings complement the quantitative findings in providing meaning to the score and explored in students’ perspective reasons for these scores. The qualitative findings also explained how students’ pride and perception about their own status reflect on the JHLES score. Students’ needs and preferences were expressed explicitly during the FGDs.

Ethical considerations

This study was approved by King Saud University’s Institutional Review Board (KSU IRB) with the approval number E-22–7298. Electronic informed consent was obtained from all participants in the quantitative arm, and written informed consent was obtained from all participants in the qualitative arm prior to their participation in the study.

Quantitative results

Sociodemographic characteristics.

Table 1 presents the sociodemographic characteristics of all participants. The total number of medical students and interns included in this phase of the study was 653. Of those studied, there was an almost equal gender distribution, with males making up slightly more than half (59%). There were relatively varied numbers of academic years, with less than average representation coming from the intern level at a participation rate of only 4%, while the highest engagement occurred during fourth-year studies at approximately 26%. Most individuals boasted high academic records, achieving an above-average GPA of 4.50–5.00 (65.7%). Of those who participated, a small fraction had lower grades below a GPA of 4 (11.5%). The majority of the participants were unemployed (96.2%), while less than 4% were either employed (full- or part-time) or freelancers (1.5%). Regarding personal life traits, most of the participants were single (98.5%) and lived with their families residing in Riyadh (93%).

As shown in Table  2 , the overall mean score for student experience was 81 ( SD  = 16.76). Among the specific subscales, the highest mean score was observed for physical space (3.52; SD  = 0.95), and the lowest mean score was found for inclusion and safety (2.27; SD  = 0.95).

Sociodemographic variables and overall and domain scores of the JHLES (mean and SD)

Associations between sociodemographic variables and the different domains of the JHLES as well as the overall score are represented in Table  3 . Male students reported a higher mean overall score than females did (83.4 ± 17.1 and 77.5 ± 15.7, respectively). As the number of academic years increased, the first-year students reported a greater average score than did the senior-year students, with a mean overall score for first-year medical students of 87.6 ( SD  = 16.9), whereas the average score for senior-year students (fifth-year) was 74.8 ± 18.2. Students who possessed higher GPAs (4.50–5.00) achieved the highest mean score of 82.2 ± 16, while those with GPAs less than 4.00 reported the lowest average score of 73.3 ( SD  = 15). Employment status was another variable impacting students' individual perceptions of this survey total score, where employed students generally outperformed unemployed students, with higher scores (88.6 ± 18.6) than unemployed students (80.7 ± 16.7). A significant association was observed between the overall JHELS score and gender, academic year, and GPA at the 0.05 level.

There was a notable difference in scores between males and females, with males reporting higher scores for all domains except “inclusion and safety”. Intriguingly, both genders reflected a similar pattern for reporting the highest score for physical space and the lowest for inclusion and safety. However, four domains showed statistically significant associations at the 0.05 level: peer community, faculty relationships, academic climate, and meaningful engagement.

Among the different academic year levels, first-year students reported the highest score for community of peers (3.64 ± 0.88) and the lowest for inclusion and safety (1.82 ± 0.90). Similarly, second- to fourth-year students reported the highest scores for physical space and the lowest scores for inclusion and safety. As the academic year progressed, fifth-year students and interns obtained the lowest scores in meaningful engagement (2.26 ± 0.94 and 2.18 ± 0.95, respectively), but the highest score was given for physical space among 5th-year students (3.42 ± 0.93) and communities of peers for interns (3.43 ± 0.87). There were statistically significant associations with all subscales except physical space ( P value = 0.33).

Students with high GPA (4.50–5.0) recorded higher results across all domains than did their peers who earned a lower GPA (i.e., less than 4.00), with the exception of inclusion and safety. It is interesting to note that the physical space domain stood out as the highest scorer for all groups, while the scores for inclusion and safety fell short among all groups according to GPA. There was a statistically significant association with the first three domains only, community of peers, faculty relationships, and academic climate.

Employed students reported higher scores on measures related to community engagement reflected in the community of peers (3.70 ± 0.63), while unemployed and freelance students had the highest scores for physical space (3.52 ± 0.95 and 3.65 ± 1.13, respectively). The inclusion and safety subscale scores were the lowest for unemployed and employed students (2.25 ± 0.95 and 2.49 ± 1.20, respectively), while freelancers reported the lowest score for the academic climate subscale (2.36 ± 0.61). Employment status was significantly associated with only the mentoring subscale ( P value = 0.02).

Students who were single attained the highest average score of 3.37 ± 0.91 on the physical space domain, while inclusion and safety presented a challenging component (2.26 ± 0.95). Conversely, those who were married or engaged garnered the highest community of peer ratings, averaging 3.53 ± 0.78, and the lowest for faculty relationships, with a mean value of 2.72 ± 0.92. Students residing with family or in private accommodations, as well as those with families living in Riyadh or outside Riyadh, reported the highest scores in the physical space domain and the lowest scores in inclusion and safety. However, the association was not statistically significant between all groups or across all subscales ( P value > 0.05) .

Qualitative results

Participants of both genders, senior and junior years, represented the FGDs (Table  4 ). One participant was employed, and all were living with their families.

As open-ended questions were used to collect data, themes were derived from deductive and inductive analysis. Inductive analysis was based on a priori themes based on the JHLES domains. Table 5 shows the domains in which participants’ perceptions were compared with the quantitative findings. Some qualitative findings aligned with the quantitative findings, while others contradicted or explained them.

Evaluating the learning environment for medical students is essential for improving their professional standards, knowledge, and skills. This mixed methods study explored medical students' perceptions about the learning environment at the College of Medicine, a well-known university in Saudi Arabia, King Saud University. This study is two-pronged, first, to quantitatively assess students’ perceptions of the COM-KSU learning environment and, second, to qualitatively explore their experience in the same medical school.

Our study yielded an overall average score of 81 out of 140 on the JHLES. Notably, there was no predefined threshold for a passing or positive score on this tool. Compared to the original study where the scale was first used and validated, the average score in our study was lower (107 vs 81, respectively) [ 7 ]. This discrepancy might be related to the original study's single-institute design affects the generalizability of its results, and the differences in student characteristics due to the U.S. requiring a bachelor’s degree for medical school admission, unlike KSA, where students enter directly after high school, play a role. Additionally, the original study did not focus on the "hidden curriculum" influenced by organizational culture and structure, which may explain the discrepancy given the distinct social, organizational, and learning cultures between our context and the American one. However, our results were consistent with those of other studies that were conducted in other medical schools in different countries, including Malaysia, India and Pakistan, ranging from 81.1 to 86 [ 9 , 10 , 11 ].

Two previously published studies in the same setting, COM-KSU (2008 and 2017), utilized the DREEM survey and revealed that medical students reported different average scores (89.9 out of 200 and 171.57 out of 250, respectively) [ 5 , 6 ]. Compared to the current study utilizing the JHLES, we may compare the findings based on a significant correlation between the two measures that support the use of the JHLES in the assessment of the same construct [ 11 ]. This comparison yielded reassuring results that the perceptions of medical students are still positive, with variations in the domains of LE, as described below. The added value of the qualitative component of the current study elicits more depth in understanding LE in the COM-KSU.

Although there was no difference among male and female students in the DREEM overall average score in a previous study that was conducted at the same college in 2017, our study revealed a higher overall average score among males (83.4) than females (77.5). The lower recorded score among females might be explained by their tendency to have higher expectations of a learning environment that was not achieved as their counterpart expected [ 12 , 13 ]. For explanations, male students had higher scores in different domains related to their relationships with the faculty and peers, including mentorship, peer support, and the academic climate. Nevertheless, both genders perceived a negative view where they expressed potential gender discrimination in the focus group interviews. Male students felt that they were treated differently than females, while their counterparts believed that males had more opportunities to build relationships with the faculty and gain more experience accordingly.

In terms of academic years, the domains and overall average scores decreased as the students progressed from the first year to their internships, with an exceptional decrease in the third year followed by the recovery of scores afterward. Nevertheless, students in the first year had higher average scores than interns, possibly due to the new environment and the support provided during their first year. Qualitative group interviews elaborated more on this variation, where medical students in the first year felt a sense of pride and honor upon being accepted in the COM-KSU. They believe that this was a validation of their social status.

Although the relationship between medical students’ feelings of pride in belonging to their college and the learning environment is complex and multifaceted [ 14 ], a positive and supportive learning environment that fosters a sense of belonging can enhance medical students’ feelings of pride and affiliation with their college [ 15 , 16 ], which is evident among first-year medical students. In contrast, a negative learning environment that lacks support and inclusivity can detrimentally impact medical students’ feelings of pride and belonging [ 17 ]. Nevertheless, first-year students still experienced negative emotional effects that were not captured by the quantitative questionnaire due to the lack of professional identification they encountered when they moved from the preparatory year to medical school.

However, the decrease in the average score during the third year could be explained by engagement in clinical rotations and practical applications instead of merely learning basic science. This perception was explained during focus group interviews where students explained the third year as the most challenging due to the preparation for their actual medical practice. This included starting to see patients, taking medical history, and performing physical examinations. Interestingly, this result was consistent with other studies that were conducted in different medical schools, although different assessment tools were used, including MSLES, DREEM, and the same tool used in this study (i.e., JHLES) [ 3 , 7 , 10 ]. In contrast, other studies have shown that medical students feel more satisfied with clinical practice than with basic science during the first and second years [ 12 , 18 , 19 ].

This paradox might be explained by the difficulty students faced at the beginning of the clinical year, after which it decreased or diminished after they gained confidence in their practice under the supervision of well-trained faculty [ 20 , 21 , 22 ]. Hence, higher average scores in the following years could be explained by the maturity of the medical students and their ability to overcome early difficulties after they have more experience during clinical rotations. In the COM-KSU, medical students in their fifth year are prepared to experience life as physicians where they have pure clinical experience joining medical teams, attending rounds, clinics and doing procedures under the supervision of trained faculty and senior doctors. Hence, when mentoring was assessed among medical students, their perception reflected by the average score given to this domain increased as the number of academic years increased, with the highest score occurring during the internship. Mentorship plays an important role in the learning environment, as described in other studies [ 23 , 24 , 25 ]. The importance of the student‒faculty relationship and the enhancement of faculty influence on students are supported by the qualitative findings, which demonstrate that students' perceptions of faculty support vary, which is congruent with other studies [ 26 , 27 , 28 ]. However, a study revealed that the majority of faculty members are not prepared to provide the kind of support that has been shown to be most effective for students [ 29 ].

Furthermore, the meaningful engagement of students declines as the academic year progresses, as expressed by students’ responses to this domain in the JHLES. The qualitative approach elaborated more when students complained about the lack of support provided by the student council, which the COM-KSU perceived as the hub where medical students can engage and obtain the required support. From the students’ perspective, the student council was not able to provide effective support or bring about significant changes for students facing challenges related to their medical study needs. The qualitative study participants agreed with the findings of other local studies, highlighting the absence of a supportive environment for students in our local colleges [ 12 , 30 , 31 ]. On the other hand, the majority of students reflected positively on peer support, where they found it to have a positive impact on them. They identified college friends and colleagues as the main sources of support, which was congruent with other studies that explained the same attitude [ 32 , 33 , 34 ].

According to the students’ performance measured by their GPA, students with higher GPA had higher JHLES scores, both overall and domain average scores. High-achieving students tend to have more positive perceptions of the learning environment than do students with lower GPAs [ 10 , 11 , 21 , 22 , 35 ]. This could suggest a positive association between academic achievement and students’ perceptions of the educational setting [ 18 , 19 , 36 , 37 , 38 ]. However, students experienced positive consequences from high competition in the learning environment due to family and physician expectations that were captured during the focus group discussion. Similar results were found in another study that was conducted in the medical school of the University of Valladolid [ 39 ].

Inclusion and safety were negatively perceived in this study among medical students at all levels, regardless of their gender, academic year, or performance, which was reflected in their GPAs. This finding was consistent with other studies measuring the same domain average score of Cyberjaya University College of Medical Sciences (CUCMS), Nil Ratan Sircar Medical College (NRSMC), and College of Medicine and Sagore Dutta Hospital (CMSDH) [ 9 , 11 ]; however, this finding was in contrast to that of PUGSOM [ 40 ]. A possible explanation might be related to the aforementioned reasons, which were associated with students’ perceptions of gender discrimination, stress in the first year due to the new environment and in the third year due to engagement in clinical practice, and their achievements, which elevated stress when they had lower GPAs. Previous studies have shown that the prevalence of stress is greater during the first three years of medical education, which is consistent with our findings [ 35 ].

In contrast, the physical space domain in our study received the highest score, where we believe that physical space has improved as a result of the college's 2018 expansion [ 41 ].

Strengths and limitations

One key strength of this study is the employment of a comprehensive mixed methods approach to gain an understanding of how students perceive their learning environment. This approach collects numerical data, delves deeply into the students’ experiences and feelings, and provides valuable insights through the integration of findings from both approaches. Another strength of this study is the large number of participants from different academic years, which allows for a diverse range of perspectives from both new and experienced students.

Nevertheless, convenience sampling may not fully represent the student population and limits the generalizability of the findings. Additionally, focusing on one institution may not capture the experiences of students across different settings, cultures, or cities, potentially limiting the applicability of any recommendations to other medical colleges or regions. However, the large sample size, the diversity of data and the integration of results may enhance the transferability of the findings.

Recommendations for educational institutions

Enhance faculty development: Address the issues of perceived neutrality and reported negative interactions with faculty by investing in faculty development programs. These programs should focus on improving communication skills and mentoring abilities and cultivating more supportive and encouraging faculty‒student relationships. Creating opportunities for regular feedback from students can also aid in faculty improvement. This is important as students showed high tendency to be influenced by advice from faculty member.

Cultivate Supportive Environments: Foster a less stressful academic climate by promoting a culture of mutual respect and collaboration within the institution. Encourage open dialog between students and faculty, where questions and concerns can be raised without judgment. Stress management and well-being programs should be implemented to help students cope with academic pressures.

Revise Curriculum and Mentorship Programs: Address curriculum concerns by engaging students in the curriculum development process. Consider their suggestions for better organization, logical flow, and references. Additionally, structured mentorship programs that connect students with experienced doctors who can provide guidance, share experiences, and serve as positive role models should be established.

Evaluate and Improve Support Services: Reevaluate the effectiveness of support services such as the students' council and academic support departments. These services are responsive to students' needs and have the authority to enact meaningful changes. Regularly solicit feedback from students to gauge the impact of these services.

Promote Inclusivity and Gender Equity: as FGDs showed that both genders feel discriminated against, creating initiatives to address perceptions of discrimination and gender bias within the learning environment is important. This may involve raising awareness, offering training on gender sensitivity, and implementing policies that promote inclusivity and equal opportunities for all students, regardless of gender.

Recommendations for further research:

Longitudinal studies should be conducted to track the changes in students’ perceptions and experiences. This will help us identify emerging trends and understand the long-term effects of interventions and policy changes.

This research can be expanded by including studies with medical schools or institutions to validate our findings and assess how applicable they are in diverse educational settings.

The use of mixed methods research in the field of education should be further explored. Investigate approaches that combine qualitative and deductive methods to gain deeper insights into students’ educational experiences.

Dive deeper into specific areas highlighted in this research, such as mentoring programs and concerns related to the curriculum. Explore ways to enhance mentoring effectiveness and develop strategies for improving the curriculum to create a learning environment.

Interventions targeted at addressing identified areas should be implemented for improvement while thoroughly evaluating their impact. This will enable institutions to assess the effectiveness of these interventions based on data-driven decisions leading to the enhancement of education.

This study was the first to assess the learning environment of medical students at COM-KSU through quantitative and qualitative approaches. The overall average JHLES score indicated room for improvement, in line with global trends. Gender disparities, challenges in different academic years, and the critical role of mentorship were identified. Academic performance correlated positively with students' perceptions, while inclusion and safety were areas of concern. The physical space domain received the highest score, reflecting investments in infrastructure. These findings underscore the need for targeted interventions to address gender disparities, enhance mentorship, improve student engagement, and ensure inclusivity and safety, ultimately enhancing the educational experience of COM-KSU medical students.

Availability of data and materials

The datasets used and analyzed during the current study are available for request from the corresponding author.

Abbreviations

• Learning environment

Johns Hopkins Learning Environment Scale

College of Medicine at King Saud University

Dundee Ready Educational Environment Measure

Focused group discussions

Medical School Learning Environment Survey

Cyberjaya University College of Medical Sciences

Nil Ratan Sircar Medical College

College of Medicine and Sagore Dutta Hospital

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Almansour, M., Abouammoh, N., Idris, R.B. et al. Exploring medical students' experience of the learning environment: a mixed methods study in Saudi medical college. BMC Med Educ 24 , 723 (2024). https://doi.org/10.1186/s12909-024-05716-4

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Introduction There is no standardised national guidance on clinical management for people living with mild cognitive impairment (MCI) and therapeutic interventions are limited. Understanding what outcomes are important and meaningful to people living with MCI and developing a core outcome set for research and clinical practice will improve the impact of clinical research and contribute towards developing effective care pathways for MCI. This study aims to develop a core outcome set (COS) for adults living with MCI intended for use in interventional and clinical settings. Methods and analysis The COS will be developed using a five-stage study design: (1) systematic literature search; (2) qualitative interviews; (3) evidence synthesis from stage 1 and 2; (4) two-round Delphi survey; (5) consensus meetings. First, we will conduct an umbrella review of existing MCI interventional studies and extract a list of outcomes. Qualitative interviews will be held with key stakeholders including individuals living with MCI, friends and family, and relevant professionals to identify further outcomes considered important. Outcomes from the review and interviews will be synthesised into a long list of outcomes for potential inclusion in the COS. Two rounds of a Delphi surveys followed by a consensus meeting will be used to reach stakeholder consensus on which outcomes should be included in the final COS. Ethics and dissemination We have received ethical approval from London - Queen Square Research Ethics Committee (23/PR/1580). Patient and public involvement and engagement are central to developing the COS. The results will be disseminated via conferences, peer-reviewed publications, briefing notes to key agencies, to the public via social media and blog posts, and directly to stakeholders who participate in the project. Trial registration number Core Outcome Measures in Effectiveness Trials (COMET) Initiative 2117; PROSPERO registration: CRD42023452514.  

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74th session of the WHO Regional Committee for Europe

First qualitative research study conducted in Turkmenistan focuses on HPV vaccination

Within the framework of a WHO–European Union joint project on immunization in central Asia, the WHO Country Office in Turkmenistan and the Ministry of Health and Medical Industry of Turkmenistan jointly conducted the country’s first qualitative research study.

The project aimed at identifying factors influencing parents' decisions related to human papillomavirus (HPV) vaccination for their children. Consisting of focus-group discussions and in-depth interviews, the research provided an understanding of parents’ attitudes and beliefs about HPV as well as barriers to HPV vaccination.

The results of the research conducted over 3 weeks in late 2023 will serve as the basis for activities to increase public awareness about HPV and sustain confidence in HPV vaccination in the future.

HPV vaccination in Turkmenistan

Turkmenistan included the HPV vaccine in its routine immunization schedule starting in 2016, for boys and girls at 9 years of age. Although national vaccination coverage remains high, a slight downward trend has been observed in both urban and rural areas: from 99.2% in 2021 to 98.5% in 2023.

With a relatively young population increasingly turning to the internet for information, it is important that evidence-based answers to potential questions about vaccination are readily available. However, official online information about vaccines remains limited, creating an opportunity for misinformation to spread with the potential to decrease vaccination uptake in the coming years.

The Ministry asked WHO to conduct a qualitative research study to identify what parents know about HPV, the diseases it can cause, the effectiveness of vaccination in preventing these diseases, and especially what questions or concerns they have on HPV vaccination that need to be addressed in a transparent and accessible manner.

The study, conducted jointly by experts from the Ministry and WHO, aimed to develop targeted interventions to better inform the public and health-care workers about HPV vaccines. Focus groups and in-depth interviews with health-care providers, parents and staff of public organizations were conducted to identify participants’ knowledge, attitudes and behavioural determinants for uptake of HPV vaccine and childhood vaccines in general.

The study was conducted in cities, including the capital, as well as in rural sites in 2 regions. Data collection and analysis were conducted using the COM-B framework, which looks at 3 key components: capability, opportunity and motivation for behaviour change.

Study outcomes

Study findings revealed that attitudes toward HPV were generally positive, partially due to positive attitudes toward vaccination in general but also due to preparatory steps taken by health authorities prior to introducing the HPV vaccine in 2016.

These steps included informing and training health workers to administer and answer questions about the vaccine and to inform parents and children about the benefits of HPV vaccination in preventing HPV infection, emphasizing its role in preventing the spread of the virus rather than only in preventing cervical cancer.

Despite high levels of knowledge and trust in vaccination, study participants did reveal certain gaps in knowledge and potential vulnerability to misinformation. Based on the findings, researchers proposed several measures, including:

• making up-to-date information on childhood vaccination available through a single online portal to ensure accessibility and availability for the public;
• training health workers to increase their capacity to effectively communicate with parents on HPV and other vaccines in the routine immunization schedule; and
• using existing facility-level data and ongoing activities to conduct local, community-based interventions to effectively engage the minority of parents delaying or rejecting vaccination.

Based on these recommendations, the Ministry is developing an action plan that will include regular training for health workers and provision of information to parents via online resources and individual consultations.

With an eye to sustaining high demand for vaccination in the future, the Ministry is also planning to pilot an education module for 10–12-year-olds called Immune Patrol in several schools. WHO developed Immune Patrol to increase health literacy, resistance to misinformation, and knowledge about the immune system and immunization. WHO will provide technical support to the Ministry to implement the action plan and to pilot the Immune Patrol package in 2024 and beyond.

Partnering with the European Union to support and strengthen vaccination

Questions and answers about human papillomavirus, second edition

Field guide to qualitative research for new vaccine introduction

Supporting the prevention, detection and treatment of cervical cancer