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Introduction: Research with young people (YP) is ethically challenging and bound in a complex maze of issues relating to power, voice and representation. Such sensitivities mean that the challenges raised in researching marginalised YP are often hard to navigate. This paper reports on research carried out with YP to explore links between mental health, school exclusion and involvement in criminal gangs. It aims to provide a practical guide to negotiating some of the methodological and ethical challenges experienced. Method: In‐depth interviews conducted with 28 YP (aged 14–24 years) who were gang involved or seen to be at risk of gang involvement. Research was conducted in youth clubs, alternative provision and youth justice settings. Results: Observations/Reflections We reflect on how navigating ethics can create barriers to involving YP as primary informants in research. We consider why it is important to overcome these hurdles and how public engagement work with recognised gatekeepers and the use of creative interview methods can facilitate meaningful encounters, where YP feel able to share valuable insights into their lives. Conclusion: Alongside a number of specific learning points, the paper reflects on theories behind research with YP, including the need for recognition of power imbalances and reflexivity. It concludes with thoughts on the practical realities of achieving meaningful participation or an 'authentic voice' with marginalised groups and the importance of this in informing policy and practice. Patient or Public Contribution: The focus of this work was to collect experiences of YP who are recognised as gang‐involved or at risk of being so, with a view to informing health and education policies. The scoping study for the project involved extensive public engagement work with YP exploring and trialling suitable methods of accessing, recruiting and ultimately interviewing this target group. This is central to the discussion within the body of the paper. [ABSTRACT FROM AUTHOR]

Introduction: Facilitators to implement shared cancer follow‐up care into clinical practice include mechanisms to allow the oncologist to continue overseeing the care of their patient, two‐way information sharing and clear follow‐up protocols for general practitioners (GPs). This paper aimed to evaluate patients, GPs and radiation oncologists (ROs) acceptance of a shared care intervention. Methods: Semi‐structured interviews were conducted pre‐ and post intervention with patients that were 3 years post radiotherapy treatment for breast, colorectal or prostate cancer, their RO, and their GP. Inductive and deductive thematical analysis was employed. Results: Thirty‐two participants were interviewed (19 patients, 9 GPs, and 4 ROs). Pre intervention, there was support for GPs to play a greater role in cancer follow‐up care, however, patients were concerned about the GPs cancer‐specific skills. Patients, GPs and ROs were concerned about increasing the GPs workload. Post intervention, participants were satisfied that the GPs had specific skills and that the impact on GP workload was comparable to writing a referral. However, GPs expressed concern about remuneration. GPs and ROs felt the model provided patient choice and were suitable for low‐risk, stable patients around 2–3 years post treatment. Patients emphasised that they trusted their RO to advise them on the most appropriate follow‐up model suited to their individual situation. The overall acceptance of shared care depended on successful health technology to connect the GP and RO. There were no differences in patient acceptance between rural, regional, and cancer types. ROs presented differences in acceptance for the different cancer types, with breast cancer strongly supported. Conclusion: Patients, GPs and ROs felt this shared cancer follow‐up model of care was acceptable, but only if the RO remained directly involved and the health technology worked. There is a need to review funding and advocate for health technology advances to support integration. Patient or Public Contribution: Patients treated with curative radiotherapy for breast, colorectal and prostate cancer, their RO and their GPs were actively involved in this study by giving their consent to be interviewed. [ABSTRACT FROM AUTHOR]

Researchers are engaged with producing knowledge. Through this knowledge production, they make claims about the world. For applied health researchers, our knowledge production is both a scientific as well as a moral activity. Increasingly, oral health researchers are turning to qualitative research, a research approach that takes science and morality seriously. Qualitative research pushes researchers to think about the different worlds in which people live and work, and endeavours to generate data that reflect those worlds. This paper argues that humans are complex, and that qualitative approaches are necessary for understanding how we are all deeply embedded in historical, social, cultural and political contexts, and why this matters when thinking about oral health. This paper also dispels myths about the limitations of qualitative research and proposes future directions to improve the sophistication of qualitative oral health sciences. [ABSTRACT FROM AUTHOR]

Objectives Methods Results Conclusion To investigate health consumers' ethical concerns towards the use of artificial intelligence (AI) in EDs.Qualitative semi‐structured interviews with health consumers, recruited via health consumer networks and community groups, interviews conducted between January and August 2022.We interviewed 28 health consumers about their perceptions towards the ethical use of AI in EDs. The results discussed in this paper highlight the challenges and barriers for the effective and ethical implementation of AI from the perspective of Australian health consumers. Most health consumers are more likely to support AI health tools in EDs if they continue to be involved in the decision‐making process. There is considerably more approval of AI tools that support clinical decision‐making, as opposed to replacing it. There is mixed sentiment about the acceptability of AI tools influencing clinical decision‐making and judgement. Health consumers are mostly supportive of the use of their data to train and develop AI tools but are concerned with who has access. Addressing bias and discrimination in AI is an important consideration for some health consumers. Robust regulation and governance are critical for health consumers to trust and accept the use of AI.Health consumers view AI as an emerging technology that they want to see comprehensively regulated to ensure it functions safely and securely with EDs. Without considerations made for the ethical design, implementation and use of AI technologies, health consumer trust and acceptance in the use of these tools will be limited. [ABSTRACT FROM AUTHOR]

Background: Above cuff vocalisation (ACV) involves the application of an external flow of air via the subglottic port of a tracheostomy. ACV can facilitate vocalisation and may improve swallowing and quality of life for patients with a tracheostomy. A recent systematic review highlighted the limited evidence available for the acceptability, effectiveness, safety or optimal implementation of ACV. Aims: To explore the experience of healthcare professionals (HCPs) using ACV and their perceptions of best practice. Methods and Procedures: Semi‐structured interviews were conducted with a range of HCPs with experience using ACV. Topics included: experiences with ACV, management of ACV, opinions about ACV, impact of COVID‐19, future directions for ACV and impact on length of stay. Interviews were conducted online from December 2020 to March 2022. Data were analysed using reflexive thematic analysis. Outcomes and Results: Twenty‐four HCPs were interviewed from seven countries and five professional groups. Four interconnected themes were developed: (1) moral distress amplifying the need to fix patients; (2) subjectivity and uncertainty leading to variations in practice and purpose; (3) knowledge and experience leading to control and caution; and (4) worth a try or a last resort. Theme four contained three sub‐themes: (a) part of the toolbox; (b) useful but limited tool; and (c) following the patient's lead. The moral distress experienced by HCPs and their essential 'need to fix' patients seems to underpin the varied opinions of ACV. These opinions appear to be formed primarily on the basis of experience, because of the underlying subjectivities and uncertainties. As knowledge and experience with ACV increased, and adverse events were experienced, most HCPs became more cautious in their approach to ACV. Conclusions and Implications: More research is needed to reduce the subjectivities and uncertainties surrounding ACV. The implementation of standardised procedures, processes, and competencies may help to reduce the frequency of adverse events and support a more controlled approach. Widening the focus of the purpose of ACV to include swallowing may help to maximise the potential benefits. WHAT THIS PAPER ADDS: What is already known on the subject: There is limited and low‐quality evidence for above cuff vocalisation (ACV) and clinical application and practice varies substantially. However, the reasons for this variation in practice and healthcare professionals' (HCPs') opinions of ACV were unclear. What this study adds: HCPs' experiences and opinions of ACV vary as a result of the uncertainty and subjectivity surrounding ACV compounded by their personal experiences with it. A need for caution also appears to emerge as HCPs become more familiar and experienced with using ACV. What are the clinical implications of this work?: Implementing standardised procedures, safety processes and competencies may help to compensate for the uncertainty and subjectivity surrounding ACV and may reduce the frequency of adverse events. Widening the focus of purpose of ACV, including swallowing in addition to communication, may increase the number of potential candidates and increase the potential benefits of ACV. Using multidisciplinary team (MDT) simulation training for ACV competency development might help to improve MDT working and ACV implementation. [ABSTRACT FROM AUTHOR]

Introduction: To explore academia perceptions and experience with unethical authorship practices in their respective institutions.Method: 21 in-depth interviews were carried out.Results: Our analysis revealed variability in experiences with various types of unethical authorship practices among the interviewees. Second, we found that unethical authorship practices are not so unusual among academia although the exact numbers of incidents are unknown due to the fact that such practices are seldom reported. Third, our interviewees revealed that the culture of 'publish or perish' could be the main contributor to unethical practices of authorship because publication records are the main criteria for researcher's career evaluation besides, others, which are set by the university.Conclusion: It was suggested that the institution must play a proactive role in educating and promoting awareness on authorship guidelines, through education and training, ethical leadership as well as promoting the importance of publication ethics. [ABSTRACT FROM AUTHOR]

Multimodal data have the potential to explore emerging learning practices that extend human cognitive capacities. A critical issue stretching in many multimodal learning analytics (MLA) systems and studies is the current focus aimed at supporting researchers to model learner behaviours, rather than directly supporting learners. Moreover, many MLA systems are designed and deployed without learners' involvement. We argue that in order to create MLA interfaces that directly support learning, we need to gain an expanded understanding of how multimodal data can support learners' authentic needs. We present a qualitative study in which 40 computer science students were tracked in an authentic learning activity using wearable and static sensors. Our findings outline learners' curated representations about multimodal data and the non‐technical challenges in using these data in their learning practice. The paper discusses 10 dimensions that can serve as guidelines for researchers and designers to create effective and ethically aware student‐facing MLA innovations. Lay Description: What is already known about this topic: Many MLA systems are designed without learners' involvement.Understanding of how multimodal data can support learners' authentic needs is needed.MLA have the potential to enable the automated generation of models to provide real‐time feedback. What this paper adds: Understanding how learners perceive multimodal data and the learning context.The findings outline the soft challenges in using multimodal data in the learning practice.Ten dimensions were identified to serve as guidelines for researchers and designers.The paper reports learners' perspectives describing new, intriguing, and under‐developed ideas about potential uses of multimodal data in educational context.The discussion on the need for human‐centred design approaches for educational technologies has been presented. Implications for practice and/or policy: Relevant pointers for what is appropriate and ethically necessary when designing learning technologies.Change in perspective among educators, on how they address progress and engagement in learning. [ABSTRACT FROM AUTHOR]

Background: Speech–language therapists and audiologists (SLT&As) may encounter difficulties when confronted with patient death and dying, which may conflict with their moral beliefs and result in moral injury. Furthermore, South African SLT&As practice in a country with a high mortality rate, which may add to the complexity of their experience. Moreover, they may be influenced by African philosophies promoting care, which might conflict with their experiences of patient death and dying. Aims: To explore the moral injury experienced by South African SLT&As in patient death and dying, and how they overcame the injury. Methods & Procedures: This article forms part of a larger qualitative study that explored SLT&As' experiences of patient death and dying in South Africa. Thematic analysis was conducted on the transcripts of 25 episodic narrative interviews conducted with South African SLT&As on their experiences of patient death and dying. Outcomes & Results: Findings suggest that South African SLT&As experienced helplessness, guilt and anger in patient death and dying. However, with support from the allied team, engaging in self‐reflection and religious practices, they reported alleviation of moral injury. Conclusions & Implications: In order to mitigate moral injury in South African SLT&As, they require professional education, self‐care strategies, guidelines and support from the teams in which they work and their supervisors. Research is needed that explores how SLT&As' biographical characteristics and interactions with significant others of dying and deceased patients, may result in moral injury. What this paper adds?: What is already known on this subject?: Moral injury and measures used to overcome the injury have been explored in military personnel, doctors and nurses, but not in SLT&As. However, studies that explored the perceptions of SLTs and/or audiologists regarding providing palliative care and of death and dying, particularly that by Rivers et al. in 2009, suggested that these professionals may be at risk of experiencing emotional trauma due to patient death, particularly when not receiving undergraduate education on this subject. However, the extent of this trauma and the support needed to overcome it is unknown because the participants in these studies may have not experienced patient death, and were only students or just SLTs. What this article adds?: This article highlights the complexity of speech–language therapy and audiology practice when confronted with patient death and dying. South African SLT&As may have to make decisions that conflict with their morals and professional practice standards, especially as the helping nature of their profession is characterized by African philosophies that promote care, which may result in moral injury. Clinical implications of this article: This article indicates that in addition to undergraduate education on patient death and dying, SLTs and audiologists require continuous professional education on this topic, self‐care strategies, support from the teams in which they work, and their supervisors and guidelines for when they encounter patient death and dying. [ABSTRACT FROM AUTHOR]

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Child undernutrition is responsible for 45% of all under‐five deaths in low‐ and middle‐income countries (LMICs) and numerous morbidities. Although progress has been made, high levels of child undernutrition persist in Zambia. Existing studies have explored primary caretakers' (PCs) explanatory models of child undernutrition in LMICs, without comparison with those of health care providers (HCPs). This paper examines and compares the perceived causes of child undernutrition among PCs and HCPs in Zambia. We conducted a qualitative study, using semistructured one‐to‐one and group interviews, with 38 PCs and 10 HCPs to explore their perceptions of child undernutrition and its perceived causes in Lusaka district, Zambia. Interview data were analysed with thematic analysis. Our findings indicate that PCs and HCPs in Lusaka district have divergent explanatory models of child undernutrition and perceive parental agency differently. In divergently framing how they conceptualise undernutrition and who is able to prevent it, these models underpin different attributions of causality and different opportunities for intervention. PCs highlighted factors such as child food preferences, child health, and household finances. Contrarily, HCPs stressed factors such as 'improper feeding', only highlighting factors such as wider economic conditions when these impacted specifically on health care services. One factor, identified by both groups, was 'inadequate mothering'. To accelerate the reduction of child undernutrition, interventions must address divergences between PCs and HCPs' explanatory models. Additionally, attention needs to be paid to how wider socio‐economic and cultural contexts not only impact childhood undernutrition but shape attributions of causality. [ABSTRACT FROM AUTHOR]

Amidst public health campaigns urging people to sit less as well as being more physically active, this paper investigates how older adults make sense of their sedentary behaviour. Using an accounts framework focusing on how people rationalise their sitting practices, we analysed data from 44 qualitative interviews with older adults. All interviewees had received information about sedentary behaviour and health, visual feedback on their own objectively measured sitting over a week and guidance on sitting less. Participants used accounts to position sitting as a moral practice, distinguishing between 'good' (active/'busy') and 'bad' (passive/'not busy') sitting. This allowed them to align themselves with acceptable (worthwhile) forms of sitting and distance themselves from other people whose sitting they viewed as less worthwhile. However, some participants also described needing to sit more as they got older. The findings suggest that some public health messaging may lead to stigmatisation around sitting. Future sedentary behaviour guidelines and public health campaigns should consider more relatable guidelines that consider the lived realities of ageing, and the individual and social factors that shape them. They should advocate finding a balance between sitting and moving that is appropriate for each person. [ABSTRACT FROM AUTHOR]

Aim: Paediatric haematopoietic stem cell donors undergo non-therapeutic procedures and endure known and unknown physical and psychosocial risks for the benefit of a family member. One ethical concern is the risk that they may be pressured by parents or health professionals to act as a donor. This paper adds to what is known about this topic by presenting the views of health professionals.Methods: This qualitative study involved semi-structured interviews with 14 health professionals in Australasia experienced in dealing with paediatric donors. Transcripts were analysed using established qualitative methodologies.Results: Health professionals considered that some paediatric donors experience pressure to donate. Situations that were likely to increase the risk of pressure being placed on donors were identified, and views were expressed about the ethical 'appropriateness' of these practices within the family setting.Conclusions: Children may be subject to pressure from family and health professionals to be tested and act as donors, Therefore, our ethical obligation to these children extends to implementing donor-focused processes - including independent health professionals and the appointment of a donor advocate - to assist in detecting and addressing instances of inappropriate pressure being placed on a child. [ABSTRACT FROM AUTHOR]

To investigate the phenomenon of patient-physician mistrust in China, a qualitative study involving 107 physicians, nurses and health officials in Guangdong Province, southern China, was conducted through semi-structured interviews and focus groups. In this paper we report the key findings of the empirical study and argue for the essential role of medical professionalism in rebuilding patient-physician trust. Health professionals are trapped in a vicious circle of mistrust. Mistrust (particularly physicians' distrust of patients and their relatives) leads to increased levels of fear and self-protection by doctors which exacerbate difficulties in communication; in turn, this increases physician workloads, adding to a strong sense of injustice and victimization. These factors produce poorer healthcare outcomes and increasingly discontented and angry patients, escalate conflicts and disputes, and result in negative media coverage, all these ultimately contributing to even greater levels of mistrust. The vicious circle indicates not only the crisis of patient-physician relationship but the crisis of medicine as a profession and institution. Underlying the circle is the inherent conflict of interest in the healthcare system by which health professionals and hospitals have become profit-driven. This institutional conflict of interest seriously compromises the fundamental principle of medical professionalism-the primacy of patient welfare-as well as the traditional Chinese ideal of "medicine as the art of humanity". Patient trust can be restored through rectifying this institutional conflict of interest and promoting medical professionalism via a series of recommended practical measures. [ABSTRACT FROM AUTHOR]

Aim: To explore nursing students' moral distress (MD) experiences in clinical settings. Design: An interpretative phenomenological analysis (IPA) design was employed. Methods: Purposive sampling was used. In‐depth semi‐structured face‐to‐face interviews were conducted from December 2020 to June 2021 with nursing students who were taking the internship course in clinical settings. Data analysis was conducted following Dickman et al.'s (1989) method. Results: Ten nursing students participated in this study. Three main themes were identified, including (1) negative learning environments, (2) internal disgust and (3) threats to professional identity. Conclusion: Findings showed that value conflict, lack of knowledge of ethical standards and its application, and unprofessional approaches result in negative environmental learning perceptions from the nursing students. Therefore, due to being unable to change the situation, they start to feel guilt and shame and, as a result, decide to escape the problem instead of managing it. These feelings lead to internal disgust. This issue indicates the importance of improving the knowledge and perception of these situations. Thus, nursing students must be prepared for the real world, where their ideals are constantly challenged. MDs were experienced as threats to dignity, inequality, distrust, and change of mentality towards nursing, characterised as threats to professional identity. It is suggested to inquire about the process of nursing students' resiliency in morally disturbing situations to deduce the suitable approach for clinical education. [ABSTRACT FROM AUTHOR]

Predictive genetic testing may confront those affected with difficult life situations that they have not experienced before. These life situations may be interpreted as 'absurd'. In this paper we present a case study of a predictive test situation, showing the perspective of a woman going through the process of deciding for or against taking the test, and struggling with feelings of alienation. To interpret her experiences, we refer to the concept of absurdity, developed by the French Philosopher Albert Camus. Camus' writings on absurdity appear to resonate with patients' stories when they talk about their body and experiences of illness. In this paper we draw on Camus' philosophical essay 'The Myth of Sisyphus' (1942), and compare the absurd experiences of Sisyphus with the interviewee's story. This comparison opens up a field of ethical reflection. We demonstrate that Camus' concept of absurdity offers a new and promising approach to understanding the fragility of patients' situations, especially in the field of predictive testing. We show that people affected might find new meaning through narratives that help them to reconstruct the absurd without totally overcoming it. In conclusion, we will draw out some normative consequences of our narrative approach. [ABSTRACT FROM AUTHOR]

Biobanks for long-term research pose challenges to the legal and ethical validity of consent to participate. Different models of consent have been proposed to answer some of these challenges. This paper contributes to this discussion by considering the meaning and value of consent to participants in biobanks. Empirical data from a qualitative study is used to provide a participant view of the consent process and to demonstrate that, despite limited understanding of the research, consent provides the research participants with some level of control and a form of self determination that they value. Participation is framed as a moral act of a responsible citizen providing reinforcement of self identity. Consent symbolizes the trust invested in researchers and research institutions to use the biobank for the public good. The paper argues that consent continues to play an important role in biobank participation and that a participant view should inform proposals to modify consent processes. [ABSTRACT FROM AUTHOR]

Individuals who have, or are at risk for, various genetic disorders face many challenges concerning disclosures of genetic information in dating situations. We conducted a qualitative interview study of 64 individuals confronting Huntington's disease, breast cancer, or Alpha-1 antitrypsin deficiency, examining what issues these individuals encountered, and how they viewed and addressed these-including issues of understandings, privacy, and disclosures of genetic information to various groups (e.g., family members). Incidental to the primary research questions addressed, participants also often described a series of dilemmas in dating situations that they and/or family members, friends, and fellow patients faced of whether to date, and if so, whether, what, how, why, and when to disclose their genetic risk or illness. At times, these individuals feared and experienced rejection, and hence delayed, avoided, or opposed disclosure, or disclosed indirectly or inadvertently. These data are reported in this paper and highlight the importance of patients, their loved ones, genetic counselors, and other health care providers being aware of these issues, and appreciating the complex factors involved, which can affect patients' coping and social support. This paper, the first to explore several key aspects of disclosures of genetic information in dating, thus suggests needs for public and professional education, and future research in this area. [ABSTRACT FROM AUTHOR]

Accessible summary • We have done research about cancer, death and dying. People with learning disabilities who had cancer were in our studies. This paper is about making sure that our research is ethical. This means that we don’t want to cause any harm (or make people upset) when we do the research. We ask: • How do we find people to be in our studies? • What should we do if people cannot understand the research they are in? • What should we do if people do not want us to use a made-up name in our writing? • What should we do if, during the research, we see that people with learning disabilities are not treated right? • What is the relationship with the researcher? Is the researcher a nurse, a helper or a friend? There has been increasing recognition of the fact that people with learning disabilities can and should be involved as active participants in research. However, in the area of cancer and palliative care, they continue to be protected and excluded from contributing to expanding our knowledge base and the shaping of care provision. This paper explores the issues involved in including people with learning disabilities as participants in research around cancer, death and dying. It stems from the authors’ own experience of conducting research around cancer and palliative care, where people with learning disabilities were the key informants. Methodological issues include the choice of methodology and problems around recruiting a sample. Ethical issues include informed consent, participants’ requests to forego anonymity, observation of sub-optimal care and issues around the boundaries between the roles of researcher and clinician. [ABSTRACT FROM AUTHOR]

As a follow-up to a recent study which highlighted the existence of medical dominance in multi-disciplinary team (MDT) meetings, this paper presents research findings from an Australian study which shows that medico-centrism is a key cause of tension within MDTs. The findings are from a 1-year qualitative study in a regional hospital that explored the ethical decision-making of health professionals within an acute care medical unit. This exploration was conducted through an iterative, phenomenological, qualitative research methodology that consisted of open-ended interviews with a multi-disciplinary representation of health professionals and a sample of consumers for whom they care. The paper situates the notion of nursing advocacy within the context of medico-centrism and examines how the nursing profession interfaces with other disciplines. The findings indicate that the professional framework of nursing includes the language of advocacy, whilst the framework of doctors centres around the medical decision-making process. All professional groups made reference to the MDT as the modus operandi for patient-centred care. All participants noted that time and familiarity with patients and their families is essential for patient-centred care and this could be achieved through MDT collaboration. However, doctors who have scant time to spend with patients saw it as their responsibility to direct the decisions of the MDT and viewed the MDT as adding confusion to the decision-making process. Nurses reported that the limited amount of time spent by doctors in patient consultation translated into the need for advocacy. Professional and clinical confidence and experience are noted as necessary to successfully engage in the process of advocacy. The findings of this article indicate that the adoption of an advocacy role by nurses represents an important means through which MDT operation can be enhanced, medico-centrism limited and patient-centred care improved. [ABSTRACT FROM AUTHOR]

Paul Ricoeur and Michel Foucault enjoy a privileged status in nursing academia as two thinkers who influence both nursing research and philosophical explorations of nursing practice. Most nurse authors, however, focus only on the earlier works of these two philosophers and, for example, base qualitative research methodologies on Foucault's genealogy and Ricoeur's hermeneutics. In their later years, both these writers talk more explicitly about being an ethical self. Ideas from their earlier writing is evident in their writing on ethics and both writers could not discuss ethics without also exploring their ideas of the self and the other. I suggest that some of their thoughts on ethics connect with or complement each other quite well. I will first give an overview of Foucault's ethics, self and the other, and then do the same with Ricoeur's thought. In the third part of the paper I will describe how Foucault and Ricoeur complement each other, and conclude the paper by briefly suggesting how these writers influence my own practice as a nurse educator. [ABSTRACT FROM AUTHOR]

This paper draws on the authors' recent experience of piloting qualitative research into helpful and hindering events in supervision using interpersonal process recall with three supervisor-supervisee dyads. This paper presents in some detail the findings from one dyad. The authors draw on their experience of the research to raise questions relating to ethics and methodology and the implications for practice are considered. [ABSTRACT FROM AUTHOR]

BACKGROUND: There is a need for increased guidance for the ethical conduct of qualitative research with vulnerable populations such as homeless youths. AIM: The purpose of this paper is to provide an overview of the main ethical challenges of conducting qualitative research with homeless youths and to propose possible solutions to these challenges. METHODS: This paper was informed by a review of professional guidelines for the ethical conduct of adolescent health research, national (US) and international bioethics bibliographical searches, and personal experience with qualitative research with homeless youths. FINDINGS: The main ethical challenges of conducting qualitative research with homeless youths include establishing and maintaining healthy researcher roles and boundaries, addressing the risks of researcher burn-out and safety issues, assuring optimal confidentiality, and avoiding sensationalism and voyeurism. CONCLUSION: It is important for qualitative researchers who work with vulnerable populations to ensure that research is conducted in the most ethical way possible. [ABSTRACT FROM AUTHOR]

Background: Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health‐care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes. Objectives: This paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes. Design: A prospective case study design, with an embedded qualitative evaluation of PIR activity. Setting and participants: Data collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes. Data collection: Qualitative data collection involved discussion groups, and site‐specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit. Results: PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive. Discussion and conclusions: Clearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views. [ABSTRACT FROM AUTHOR]

The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: 'making recommendations' and 'providing options'. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. 'Making recommendations' led to misalignment and reduced opportunities for questions and collaboration; 'providing options' led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance. A Virtual Abstract of this paper can be accessed at: [ABSTRACT FROM AUTHOR]

Context: In vitro fertilisation (IVF) is now a common assisted reproductive technology (ART) procedure globally, with 8 million children alive today having been conceived utilising IVF. For many patients, IVF is a difficult experience with many discontinuing treatment because of emotional, relationship and financial stress, or intolerable physical side effects of hormone treatments. Design and Participants: A qualitative study, in which 31 professionals and 25 patients from the ART sector in Australia were interviewed. The interviews were analysed using codebook thematic analysis. Results: Our data indicates there are 'silences' within the therapeutic relationship of IVF, which may limit the capacity for patients to prepare emotionally, financially, or medically for the procedure, and may contribute to psychological distress and dissatisfaction with care. These 'silences' include what the patient 'is not told' by their clinician or 'does not hear' and what the patient feels they 'cannot say'. Discussion: Drawing upon the work of Jay Katz, Charis Thompson, and Miles Little on 'silences' and performance in clinical practice, we argue that although IVF is a complex and multifaceted procedure that is often conducted in a commercial setting, the clinical and therapeutic relationship between doctor and patient remains pivotal to the experiences of patients. The 'silences' within this relationship may impact negatively on decision‐making, and on the delivery and experience of care. Conclusions: Careful attention to the realities of IVF treatment in the clinic room (and awareness of the performances that hide them) should allow for more present and compassionate care. Such care may leave patients more satisfied with their experience and their choices, regardless of treatment outcomes. Patient or Public Contribution: This article draws on interviews with patients who had undergone or were currently undergoing IVF, as well as a range of representatives from the ART community (including reproductive medicine specialists, general practitioners, fertility nurses, counsellors, administrators in ART businesses and embryologists). [ABSTRACT FROM AUTHOR]

Children's perspectives literature repositions children and young people as active participants in surviving domestic abuse, protecting their family, opposing the violence and recovering from abuse. However, key tenets of safeguarding in relation to domestic abuse, both in practice and childhood research ethics, struggle to fully recognise children's agency and the need to empower children and young people as well as women. Children's right to participation now extends to national policy-making in many countries, yet has not been explored in relation to the interdependency of women and children's rights, safety and wellbeing where both have been subject to abuse. This paper challenges the current exclusion of young voices from the development of ethical praxis. It outlines a participatory ethical approach that promotes the inclusion and empowerment of young survivors in research and policy. Young expert advisors on Scottish domestic abuse policy (2009-11) co-develop the approach (participatory action research) which is informed by a wider study (2004-11) about children's help-seeking and solutions for practice. Mullender et al.' s accepted model of three Cs and Ds (consent, confidentiality, child protection: danger, distress, disclosure) are adapted to focus on children's agency. Three Es are added focusing on children's power and impact: enjoyment, empowerment and emancipation. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Children and young people have a distinct, essential voice in risk assessment and management., They are competent and central decision-makers, they can consent to participation., Participation can be a powerful therapeutic tool., Enjoyment, empowerment and emancipation are intrinsic to participation, alongside recognition of children's agency in safeguarding., Access to power, equal voice and impact on children's lives are preconditions of participation to young survivors - to be worth the inherent risk of speaking out. [ABSTRACT FROM AUTHOR]

This paper qualitatively explores national level athletes' willingness to report doping in sport. Following ethical approval, semi-structured interviews were conducted with nine national level athletes from rugby league ( n = 5) and track and field athletics ( n = 4). Thematic analysis established the main themes within the data. Contextual differences existed around the role that athletes perceived they would play if they became aware of doping. Specifically, track and field athletes would adopt the role of a whistle-blower and report individuals who were doping in their sport. In comparison, the rugby league players highlighted a moral dilemma. Despite disagreeing with their teammates' actions, the players would adhere to a code of silence and refrain from reporting doping. Taking these findings into account, prevention programs might focus on changing broader group and community norms around doping. In doing so, community members' receptivity to prevention messages may increase. Moreover, developing skills to intervene (e.g., speaking out against social norms that support doping behavior) or increasing awareness of reporting lines could enhance community responsibility for doping prevention. In sum, the findings highlight the need to consider the context of sport and emphasize that a one-size-fits-all approach to anti-doping is problematic. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2013; 27; 203-211 Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care Introduction: Providing palliative care for people with diabetes at the end of life is part of the chronic disease care trajectory, but end of life care is complex and the presence of diabetes further complicates management. Aim: The aim of the paper is to discuss the ethical and methodological issues encountered when undertaking research to develop guidelines for managing diabetes at the end of life and the strategies used to address the issues. Method: The issues emerged as we developed guidelines for managing diabetes at the end of life, which included conducting individual interviews with 14 people with diabetes requiring palliative care and 10 family members. A reflexive researcher journal was maintained throughout the guideline development process. The interview transcripts and researcher's journal were analysed to determine key methodological, ethical and researcher-related issues. Findings: Key themes were vulnerability of the sampling population, methodological issues included recruiting participants and ensuring rigor, ethical issues concerned benefit and risk, justice, autonomy, privacy, professional boundaries and informed consent. Researcher-related issues were identified such as managing participant distress and their own emotional distress. People were willing to discuss end of life diabetes management preferences. Conclusions: Undertaking research with people at the end of life is complex because of their vulnerability and the ethical issues involved. However, the ethical principles of autonomy and justice apply and people should be given the relevant information and opportunity to decide whether to participate or not. [ABSTRACT FROM AUTHOR]

ABSTRACT The moral importance of the 'intention-foresight' distinction has long been a matter of philosophical controversy, particularly in the context of end-of-life care. Previous empirical research in Australia has suggested that general physicians and surgeons may use analgesic or sedative infusions with ambiguous intentions, their actions sometimes approximating 'slow euthanasia'. In this paper, we report findings from a qualitative study of 18 Australian palliative care medical specialists, using in-depth interviews to address the use of sedation at the end of life. The majority of subjects were agnostic or atheistic. In contrast to their colleagues in acute medical practice, these Australian palliative care specialists were almost unanimously committed to distinguishing their actions from euthanasia. This commitment appeared to arise principally from the need to maintain a clear professional role, and not obviously from an ideological opposition to euthanasia. While some respondents acknowledged that there are difficult cases that require considered reflection upon one's intention, and where there may be some 'mental gymnastics,' the nearly unanimous view was that it is important, even in these difficult cases, to cultivate an intention that focuses exclusively on the relief of symptoms. We present four narratives of 'terminal' sedation - cases where sedation was administered in significant doses just before death, and may well have hastened death. Considerable ambiguities of intention were evident in some instances, but the discussion around these clearly exceptional cases illustrates the importance of intention to palliative care specialists in maintaining their professional roles. [ABSTRACT FROM AUTHOR]

Introduction: Very few pragmatic and community‐level effectiveness trials integrate the use of qualitative research over all stages of the trial, to inform trial design, implementation optimization, results interpretation and post‐trial policy recommendations. This is despite the growing demand for mixed methods research from funding agencies and awareness of the vital importance of qualitative and mixed methods research for understanding trial successes and challenges. Discussion: We offer examples from work we have been involved in to illustrate how qualitative research conducted within trials can reveal vital contextual factors that influence implementation and outcomes, can enable an informed adaptation of trials as they are being conducted and can lead to the formulation of theory regarding the social and behavioural pathways of intervention, while also enabling community engagement in trial design and implementation. These examples are based on published findings from qualitative studies embedded within two ongoing large‐scale studies demonstrating the population‐level impacts of universal HIV testing and treatment strategies in southern and eastern Africa, and a qualitative study conducted alongside a clinical trial testing the adaptation, acceptability and experience of short‐cycle therapy in children and adolescents living with HIV. Conclusions: We advocate for the integration of qualitative with clinical and survey research methods in pragmatic clinical and community‐level trials and implementation studies, and for increasing visibility of qualitative and mixed methods research in medical journals. Qualitative research from trials ideally should be published along with clinical outcome data, either integrated into the "main" trial papers or published concurrently in the same journal issue. Integration of qualitative research within trials can help not only to understand the why behind success or failure of interventions in different contexts, but also inform the adaptation of interventions that can facilitate their success, and lead to new alternative strategies and to policy changes that may be vital for achieving public health goals, including the end of AIDS. [ABSTRACT FROM AUTHOR]

ABSTRACT This paper provides part of an analysis of the use of the Maori term whakapapa in a study designed to test the compatibility and commensurability of views of members of the indigenous culture of New Zealand with other views of genetic technologies extant in the country. It is concerned with the narrow sense of whakapapa as denoting biological ancestry, leaving the wider sense of whakapapa as denoting cultural identity for discussion elsewhere. The phenomenon of genetic curiosity is employed to facilitate this comparison. Four levels of curiosity are identified, in the Maori data, which penetrate more or less deeply into the psyche of individuals, affecting their health and wellbeing. These phenomena are compared with non-Maori experiences and considerable commonalities are discovered together with a point of marked difference. The results raise important questions for the ethical application of genetic technologies. [ABSTRACT FROM AUTHOR]

Clinical ethics committees have recently been established in nearly all Norwegian hospital trusts. One important task for these committees is clinical ethics consultations. This qualitative study explores significant barriers confronting the ethics committees in providing such consultation services. The interviews with the committees indicate that there is a substantial need for clinical ethics support services and, in general, the committee members expressed a great deal of enthusiasm for the committee work. They also reported, however, that tendencies to evade moral disagreement, conflict, and ‘outsiders’ are common in the hospitals. Sometimes even the committees comply with some of these tendencies. The committees agree that there is a need to improve their routines and procedures, clarify the committees' profile and field of responsibility, to make the committees well-known, to secure adequate operating conditions, and to develop organizational integration and support. Various strategies to meet these challenges on a local, regional or national level are also explored in this paper. [ABSTRACT FROM AUTHOR]

Mobile phone use is a prevalent behaviour amongst youth; however, there is little research to determine psychological influences on mobile phone use. This paper reports the results of a qualitative exploration into social psychological factors relating to young people's mobile phone use. Focus groups were conducted with 32 participants, aged between 16 and 24 years. Three major themes, connectedness, belonging and social identity, were explored in relation to young people's mobile phone use. Easy contact with others when using a mobile phone facilitated connectedness between people. A need to remain connected emerged in participants' descriptions of their mobile phone use. Consequently, data were analysed for factors underpinning people's desire to be connected. It emerged that mobile phones were used to enhance feelings of belonging amongst youth. Additionally, group norms influenced mobile phone behaviour indicating that social identity processes are related to mobile phone use. Results in the study provide a foundation upon which to investigate further the relationship between mobile phone use and psychological factors impacting young people's social development. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Qualitative research in counselling and psychotherapy has largely been based on interviews carried out with clients and therapists. However, other approaches to qualitative data collection are possible. The present paper uses a diary design to explore the connection between what goes on in therapy sessions, and client activities and experiences in other contexts. Clients and counsellors kept diaries about significant aspects of therapy sessions, while clients also kept diaries about new and different experiences in other contexts in their lives. Ethical and practical issues involved in the use of diaries are discussed, and the methods that were employed to analyse diary-based data are described. The types of findings that the study generated are presented, along with discussion of their implications for research into client experiences of therapy. [ABSTRACT FROM AUTHOR]

Objectives This paper aims to give voice to the lived experience of faculty members who have encountered racial or ethnic discrimination in the course of their academic careers. It looks at how they describe the environment for minorities, how they manage discrimination and what institutions and majority-member faculty can do to improve medical academe for minority members. Methods Qualitative techniques were used for semi-structured, in-depth individual telephone interviews, which were audiotaped, transcribed and analysed by reviewers. Themes expressed by multiple faculty members were studied for patterns of connection and grouped into broader categories. A description of the faculty sample is provided, in which respondents ranked the importance of discrimination in hindering academic advancement and used Likert scales to evaluate effects of discrimination. The sample was drawn from 12 of 24 academic medical centres in the National Faculty Survey and included 18 minority-member faculty staff stratified by gender, rank and degree who had experienced, or possibly experienced, work-related discrimination. Results Minority faculty described the need to be strongly self-reliant, repeatedly prove themselves, develop strong supports and acquire a wide range of academic skills to succeed. Suggested responses to discrimination were to be cautious, level-headed and informed. Confronting discriminatory actions by sitting down with colleagues and raising the level of awareness were important methods of dealing with such situations. Conclusions Academic medical centres may need to make greater efforts to support minority faculty and improve understanding of the challenges confronting such faculty in order to prevent the loss and/or under-utilisation of important talent. [ABSTRACT FROM AUTHOR]

The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient-centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal ‘depth of field’. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics. [ABSTRACT FROM AUTHOR]

This paper provides an overview of the contribution of medical education research which has employed focus group methodology to evaluate both undergraduate education and continuing professional development. It also examines current debates about the ethics and practicalities involved in conducting focus group research. It gives guidance as to how to go about designing and planning focus group studies, highlighting common misconceptions and pitfalls, emphasising that most problems stem from researchers ignoring the central assumptions which underpin the qualitative research endeavour. Particular attention is paid to analysis and presentation of focus group work and the uses to which such information is put. Finally, it speculates about the future of focus group research in general and research in medical education in particular. [ABSTRACT FROM AUTHOR]

Objectives: To explore participants' views regarding clinical use of deceptive placebo (DP) and open‐label placebo (OLP) treatments. Design: Qualitative thematic analysis. Methods: We conducted eight semi‐structured interviews with healthy participants in an experimental trial comparing the efficacy of OLP and DP (Clinical trials n°NCT03934138). Interviewees' opinions were solicited following administration of placebos during the trial. Interviews were analysed using data‐driven analysis. Results: We identified three themes. First, participants considered trust central in judging a placebo treatment to be acceptable. They expressed the importance of an implicit trust both in their health care professionals' (HCPs') competency as well as in the profession at large. A second theme was the perception of how placebo treatments might solve health problems. Acceptability of both types of placebo treatments was dependent on the perception patients had about the treatment solving their problem and/or doubts regarding the effectiveness of placebos The third theme encompassed perceived risks associated with placebo prescribing. Some comments viewed placebos positively as facilitating reduced medication intake. However, participants also identified the potential of placebos to generate adverse side effects. Conclusions: Treatment acceptability by patients is a pre‐requisite, alongside effectiveness, to harness OLPs in clinical care. Our study identified the importance of trust in HCPs prescribing placebos, the clinical effectiveness of placebos and the potential risks of these interventions in assessing their acceptability. Future research is needed to explore the contexts in which placebos might be used, and how best to communicate information about placebo interventions. [ABSTRACT FROM AUTHOR]

Objective: To explore in a sample of school nurses (SN) in California the impact of the COVID‐19 pandemic on school nurse health services, how school nurses mitigated the impact of COVID‐19, and moral distress levels among school nurses. Design and Methods: Nineteen (N = 19) school nurses who work in K‐12 schools in California, USA participated in a mixed‐methods approach involving qualitative descriptive design, inductive content analysis, and descriptive statistics. Interviews were conducted in August and September 2021. Results: Five themes emerged: (1) role of the SN during the COVID‐19 pandemic, (2) coordination with school administration, (3) COVID‐19 related challenges and disruptions to care, (4) moral distress, and (5) coping during the pandemic. Conclusion: The pandemic had a profound impact on school nurses. This study provides school nurse perspectives of the impact of COVID‐19 on services they delivered, the unique skills of school nurses essential to mitigation strategies, and moral distress school nurses encountered during the pandemic. Understanding the important role school nurses had during the pandemic is paramount to fully contextualize the contributions they made within public health nursing practice and inform preparedness for future pandemics. [ABSTRACT FROM AUTHOR]

Background: Blood transfusions are frequently prescribed for acute and chronic conditions; however, the extent to which patients' and health care professionals' (HCPs') perceptions of transfusion have been investigated is unclear. Patients' treatment perceptions influence how patients cope with illnesses or symptoms. HCPs' perceptions may influence treatment decision making.Study Design and Methods: This was a systematic review of studies post-1984 reporting adult patients' and HCPs' perceptions of blood transfusion. Seven databases were searched using a three-domain search strategy capturing synonyms relating to: 1) blood transfusion, 2) perceptions, and 3) participant group (patients or HCPs). Study and sample characteristics were extracted and narratively summarized. Reported perceptions were extracted and synthesized using inductive qualitative methods to identify key themes.Results: Thirty-two studies were included: 14 investigated patients' perceptions and 18 HCPs' perceptions. Surgical patients were the highest represented patient group. HCPs were from a wide range of professions. Transfusions were perceived by patients and HCPs as being of low-to-moderate risk. Risk and negative emotions were perceived to influence preference for alternatives. Five themes emerged from the synthesis, classified as Safety/risk, Negative emotions, Alternatives (e.g., autologous, monitoring), Health benefits, and Decision making. "Safety/risk" and "Negative emotions" were most frequently investigated over time, yet periods of research inactivity are apparent.Conclusions: The literature has identified themes on how transfusions are perceived by patients and HCPs, which overlap with recognized discussion points for transfusion specialists. These themes may help HCPs when educating patients about transfusion or consenting patients. Theory-based qualitative methods may add an important dimension to this work. [ABSTRACT FROM AUTHOR]

The biopsychosocial model is currently considered by most researchers and clinicians to be the best approach to low back pain (LBP) care. The model was popularised in LBP care in response to some clear deficiencies in earlier biomedical approaches and is now widely recommended in clinical guidelines and policy statements. Yet the biopsychosocial approach has also been critiqued for its narrow conceptualisation and application. In this article, we explore how attending to the multidimensionality of LBP in practice goes beyond a biopsychosocial approach. We engaged with 90 ethnographic observations of clinical practices, 22 collaborative dialogues with clinicians, and eight consultatory meetings with people with experience of LBP to consider the sociomaterialities of clinical practices in two settings: a private physiotherapy practice and a public multidisciplinary pain clinic. Drawing on the work of Annemarie Mol and Rosi Braidotti, our analyses suggest that sociomaterial practices, involving human and non‐human actors, produced multiple objects of clinical attention and ethical concerns about how to attend to this multiplicity well. We argue that the multiplicity of LBP is attended well by reimagining: (1) clinical settings as 'becoming more‐than‐sterile environments' where objects, furniture and elements such as tears and laughter help to provide a relational, welcoming and comfortable space to all bodies with LBP; (2) differences through 'becoming minoritarian' where considering power relations allows actions towards connectiveness and belonging; and (3) disciplinary boundaries through 'becoming interdisciplinary within' where actions expand traditional scopes of practice. The flux of these multiple becomings moves clinical practice and conceptualisations beyond the biopsychosocial approach to consider a new ethico‐onto‐epistemological approach to LBP care. They invite clinical practices that engage with an ethical multiplicity of LBP care, providing a better understanding of how places, objects, emotions, power, bodies and professions are interconnected and come together in everyday practice. [ABSTRACT FROM AUTHOR]

Few studies in sub‐Saharan Africa evaluate Institutional Review Boards (IRBs) capacity. The study aims to explore the composition of IRBs, training, and challenges experienced in the ethics review processes by members of research institutions and universities in Addis Ababa, Ethiopia. Our findings indicate that most IRBs members were trained on research ethics and good clinical practice. However, majority perceived the trainings as basic. IRB members faced several challenges including: investigators wanting rapid review; time pressure; investigators not following checklists; limited expertise in reviewing clinical trials, studies on genetics, and traditional medicine; lack of IRB offices for administrative work; competing tasks; limited staffing and the lack of a standardized review system. There is need for advanced training on research ethics to meet the evolving research needs. In addition, investments in IRBs are needed in terms of funding, and physical and human resources in Addis Ababa and Ethiopia in general. [ABSTRACT FROM AUTHOR]

The study's rationale: The Scandinavian nursing tradition is based on caring science as the ontological backdrop. This means that meeting the patient with openness and respect is essential in care. The experiences of an elderly woman receiving home nursing provide insight into a world many healthcare workers need to understand; meaning what is important in the encounter with the fragile old patient whose voice is not often heard in the society nor in research. Caring science with its person‐oriented care clashes with the New Public Management's ideal for municipal health care in Norway, at the expense of the needs of the elderly patients. Aims and objectives: This article aims to express the phenomenon of lived experience as presented by an elderly woman, more specifically her experience of care in home nursing run according to the principles of new public management. Methodological design: The article is based on an empirical narrative in the form of an individual qualitative research interview. Findings: The patient has needs that cannot be defined without the nurse having an ethical understanding of what may be important in the patient´s lifeworld. The core findings are: Feeling disregarded as a human being, Broken agreements, Surrendering in anonymous relationships and Each day is a different day with altered needs. Conclusion: The system of New Public Management sets a strain on the time at hand for the nurse to develop a relationship that acknowledges and supports the patient´s life courage. The ethical demand and care ethics can explain how the patient´s will to live can be preserved, and provide knowledge of how the caregiver can best attend to the patient's ways of expressing what is important to her. Nevertheless, within the time at disposal, the nurse has an opportunity to either marginalize or strengthen the old person´s dignity. [ABSTRACT FROM AUTHOR]

Introduction: Antimicrobial resistance is one of the biggest threats facing global humanity. In 2014, Public Health England (now the UK Health Security Agency) launched the Antibiotic Guardian (AG) campaign as a national health promotion initiative to increase public and health professionals' commitment to reducing the threat of antibiotic resistance (ABR). The aim of this research study was to gain a snapshot of public AG attitudes towards antibiotic use, the AG campaign and illness postpledge. Methodology: This research used an exploratory study design using thematic and framework analysis of semistructured, in‐depth interviews. A purposive convenience sampling strategy was used to recruit 10 participants; adults in the general population who had registered with and chosen an AG pledge via the AG online platform during November 2020 were eligible for inclusion. Interviews were conducted via Zoom. Results: Six main themes were identified: campaign awareness, motivators to pledge (uncertainty about the future of ABR, personal gratification, personal responsibility, moral obligation and COVID‐19), perceptions of personal responsibility (and patient perspectives of moral obligation in clinicians), the impact of the campaign and campaign promotion. Pledging appeared to solidify existing perceptions AGs held. Behavioural motivations for responsible antibiotic behaviours stemmed from perceptions of personal responsibility, moral obligation and concerns about ABR. AGs attributed responsibility to variable patterns in overprescribing. Perceptions towards COVID‐19, coinciding with the previously established study period, appeared mixed. AGs were keen to promote responsible perceptions in relation to antibiotics, resistance and the AG campaign. However, poor social acceptability of ABR concern was raised as a barrier to campaign promotion. Discussion: The AGs' longstanding commitment to antimicrobial resistance demonstrates the importance of a pre‐existing interest in the public's self‐reported judicious behaviours and decision to pledge to an ABR‐focused campaign. Presenting the local and global threat to human mortality and morbidity in a more relatable format in public messaging should be considered in future strategies promoting ABR awareness and shifts in public perceptions. More frequent messaging to existing AGs is further recommended to propagate positive behaviour change among a wider audience. Patient or Public Contribution: This study was based on interviews with adult members of the public who had pledged to be AGs via the website www.AntibioticGuardian.com. Interviews were based on the public's perceptions of the AG campaign, antibiotic use and ABR. [ABSTRACT FROM AUTHOR]

2020 saw the rapid onset of a global pandemic caused by the SARS‐CoV‐2 virus. For healthcare systems worldwide, the pandemic called upon quick organization ensuring treatment and containment measures for the new virus disease. Nurses were seen as constituting a vital instrumental professional component in this study. Due to the pandemic's unpredictable and potentially dangerous nature, nurses have faced unprecedented risks and challenges. Based on interviews and free text comment from a survey, this study explores how ethical challenges related to "being a nurse" during the COVID‐19 pandemic was experienced and understood by Danish hospital‐based nurses. Departing from anthropologist Jarett Zigon's notion of moral breakdown, the study demonstrates how the rapid onset of the pandemic constitutes a moral breakdown raising ethical demands for nurses. Analytically we identify three different ethical demands experienced by the nurses. These ethical demands are Nursing and societal ethical demands, Nursing and personal ethical demands, and Nursing and conflicting ethical demands. These demands represent not only very different understandings of ethical demands but also different understandings of ethical acts that are seen as necessary to respond to these demands. [ABSTRACT FROM AUTHOR]

Background: Moral principles in children can influence their oral hygiene practices and can be beneficial in providing better oral health care. Aim: To assess the consistency of Piaget's moral development principles in Indian children aged 7 to 11 years and evaluate its influence on their oral hygiene practices. Design: The first phase of the embedded mixed‐method approach included telephone interviews of 50 children on eight situations of moral development as suggested by Jean Piaget. Children were categorised into heteronomous and autonomous moralities based on the content analysis. The second phase of the study included a semi‐structured qualitative interview on knowledge and practice behaviour of children on oral hygiene maintenance. Results: There was no significant difference in the overall moral development of children aged 7 to 9 years and 9 to 11 years (p =.57). Only 4.8% of girls had heteronomous morality, and a significant difference was noted between boys and girls (p =.014). There was a significant difference in the oral hygiene practices observed between heteronomous morality and autonomous morality children. Conclusion: Children were autonomous in their morality at 7 to 9 years of age. Children with autonomous morality performed better oral hygiene practices than children with heteronomous morality. [ABSTRACT FROM AUTHOR]

How scholars and IRBs perceive and apply the Belmont principles in crowd work‐based research was an open and largely neglected question. As crowd work becomes increasingly popular for scholars to implement research and collect data, such negligence, signaling a lack of attention to the ethical issues in crowd work‐based research more broadly, seemed alarming. To fill this gap, we conducted a qualitative study with 32 scholars and IRB directors/analysts in the United States to inquire into their perceptions and applications of the Belmont principles in crowd work‐based research. We found two dilemmas in applying the Belmont principles in crowd work‐based research, namely the dilemma between the dehumanization and expected autonomy of crowd workers, and the dilemma between the monetary incentive/reputationall risks and the conventional notion of research benefits/risks. We also compared the scholars' and IRBs' ethical perspectives and proposed our research implications for future work. [ABSTRACT FROM AUTHOR]

Introduction: The COVID‐19 pandemic had an unprecedented effect on those living and working in care‐homes for older people, as residents were particularly vulnerable to contracting the SARS‐CoV‐2 virus, associated with high morbidity and mortality. Often undervalued, care‐home nurses (RNs) are leaders, managing complex care while working in isolation from their professional peers. The pandemic made this more apparent, when care and treatments for COVID‐19 were initially unknown, isolation increased due to withdrawal of many professional health services, accompanied by staff shortages. Objective: To explore RNs' experiences of working in older people's care‐homes during the COVID‐19 pandemic. Design: Qualitative interview study. Setting: Care‐homes for older people in England and Scotland, UK. Methods: Recruitment via direct contact with care‐homes, social media, and links provided by national partners, then purposive sampling for age, gender, type of care‐home, and location. Data collected through one‐to‐one online interviews using topic guide developed collaboratively with care‐home nurses, focusing on how COVID‐19 impacted on nurses' resilience and mental wellbeing. Data analyzed thematically using Tronto's ethics of care framework to guide development of interpretative themes. Results: Eighteen nurses (16 female; 16 adult, and two mental health nurses) were interviewed March–June 2021; majority aged 46–55 years; mean time registered with Nursing and Midwifery Council: 19 years; 17 had nursed residents with COVID‐19. RNs' experiences resonated with Tronto's five tenets of ethical care: attentiveness, responsibility, competence, responsiveness, and solidarity. All nurses described being attentive to needs of others, but were less attentive to their own needs, which came at personal cost. RNs were aware of their professional and leadership responsibilities, being as responsive as they could be to resident needs, processing and sharing rapidly changing guidance and implementing appropriate infection control measures, but felt that relatives and regulatory bodies were not always appreciative. RNs developed enhanced clinical skills, increasing their professional standing, but reported having to compromise care, leading to moral distress. Broadly, participants reported a sense of solidarity across care‐home staff and working together to cope with the crisis. Conclusion: Care‐home nurses felt unprepared for managing the COVID‐19 pandemic, many experienced moral distress. Supporting care‐home nurses to recover from the pandemic is essential to maintain a healthy, stable workforce and needs to be specific to care‐home RNs, recognizing their unique pandemic experiences. Support for RNs will likely benefit other care‐home workers either directly through wider roll‐out, or indirectly through improved wellbeing of nurse leaders. Clinical relevance: The COVID‐19 pandemic, an international public health emergency, created many challenges for Registered Nurses (RNs) working in long‐term care facilities for older people, as residents were particularly vulnerable to the impact of the SARS‐CoV‐2 virus. Care‐home RNs faced challenges distinct from their hospital‐based nursing peers and non‐nursing social care colleagues due to their isolation, leadership roles, professional legal obligations, and ethical responsibilities, leading to psychological distress on the one hand, but also a newly found confidence in their existing and newly developed skills, and increased recognition by the wider health community of their specialisms. [ABSTRACT FROM AUTHOR]

Aim: To explore next of kin's experiences and attitudes regarding information surrounding the introduction and use of technology to monitor residential home residents with dementia. Background: As our population ages, conditions increase health care and societal challenges. Digitalisation and welfare technology are important for developing health services for the ageing population; adapting information‐sharing and communication about these pics with those involved, such as next of kin, will become increasingly important for developing appropriate services. Design: This qualitative study has an exploratory and interpretative approach, using in‐depth interviews based on a hermeneutical–phenomenological perspective. Methods: During the process of implementing a variety of residential care monitoring technologies, data were collected primarily via semi‐structured, in‐depth interviews with care providers and next of kin. In addition to the individual interviews, one focus group interview was carried out with care providers. Results: Next of kin are a heterogeneous group who need differing types of information – and different styles of communication – to convey information about their relatives in residential care. General attitudes among the next of kin towards welfare technology were positive. Three analytic themes that illustrate the next of kin concerns emerged: (1) concern for safety, autonomy and ethics; (2) resistance and optimism towards technology; (3) information about the use of monitoring technology. Conclusion: Digital monitoring technology is increasingly being implemented in residential care. Next of kin are salient in this context. Accordingly, best practices for informing and communicating in a collaborative process must be developed. While some next of kin have resources and are able to be highly engaged, others are unable or unwilling to be active participants in their family members' lives. It is critical that care providers are aware that next of kin are a heterogeneous group. Our proposed profiles may prove helpful for giving the right information and attention to next of kin, and this may improve residential care services. Relevance to clinical practice: These findings may aid in the tailoring of information and communication systems to individual next of kin's needs and in improving residential care services. [ABSTRACT FROM AUTHOR]

The term 'sibling sexual dynamics' (SSD) describes (in this study) a continuum of childhood sexual behaviours that are inconsistent with age‐appropriate curiosity and can include abuse (SSA). The present qualitative study, based on 20 semi‐structured interviews, conducts an analysis via constructivist grounded theory on the perspectives of adults who, as children in the Orthodox Jewish community, experienced sexual interactions with one or more of their siblings. Ultimately, the goal is to deepen the understanding of the religio‐cultural aspects of SSD in this cultural context. The findings reveal three main themes: (1) taboos, both those relating to intrafamilial sexual encounters and the religious taboo around sexuality in general; (2) family hierarchic dynamics, including gender‐based hierarchies; and (3) religious prohibition, a concept that the participants perceive as influencing their modes of thought and logic. The study highlights the need for practitioners to attend to the double ambiguity arising from the sibling and religious contexts. Additionally, we suggest that distinguishing between religious and interpretative socio‐cultural factors may provide practitioners with a path to create a dialogue with clients, individuals and religious leaders within the community around issues that may constitute risk for sibling sexual acts and abuse. [ABSTRACT FROM AUTHOR]