BackgroundDefensive practice occurs when physicians provide services, such as tests, treatments and referrals, mainly to reduce their perceived legal or reputational risks, rather than to advance patient care. This behaviour is counter to physicians’ ethical responsibilities, yet is widely reported in surveys of doctors in various countries. There is a lack of qualitative research on the drivers of defensive practice, which is needed to inform strategies to prevent this ethically problematic behaviour.MethodsA qualitative interview study investigated the views and (...) experiences of physicians in Australia on defensive practice and its contribution to low value care. Interviewees were recruited based on interest in medico-legal issues or experience in a health service involved in ‘Choosing Wisely’ initiatives. Semi-structured interviews averaged 60 min in length. Data were coded using the Theoretical Domains Framework, which encapsulates theories of behaviour and behaviour change.ResultsAll participants (n = 17) perceived defensive practice as a problem and a contributor to low value care. Behavioural drivers of defensive practice spanned seven domains in the TDF: knowledge, focused on inadequate knowledge of the law and the risks of low value care; skills, emphasising patient communication and clinical decision-making skills; professional role and identity, particularly clinicians’ perception of patient expectations and concern for their professional reputation; beliefs about consequences, especially perceptions of the beneficial and harmful consequences of defensive practice; environmental context and resources, including processes for handling patient complaints; social influences, focused on group norms that encourage or discourage defensive behaviour; and emotions, especially fear of missing a diagnosis. Overall, defensive practice is motivated by physicians’ desire to avoid criticism or scrutiny from a range of sources, and censure from their professional peers can be a more potent driver than perceived legal consequences.ConclusionsThe findings call for strengthening knowledge and skills, for example, to improve clinicians’ understanding of the law and their awareness of the risks of low value care and using effective communication strategies with patients. Importantly, supportive cultures of practice and organisational environments are needed to create conditions in which clinicians feel confident in avoiding defensive practice and other forms of low value care. (shrink)

Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 (...) semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows. (shrink)

Using an interpreter in qualitative interviews: does it threaten validity?There is an extensive literature on the problem of translating scales for use across cultures, but very little is published on the problems of conducting qualitative interviews in another language with assistance of an interpreter. The aim of this paper is to describe and discuss threats to validity that arise when conducting qualitative interviews using an interpreter. Ten female student nurses in two cities in Lithuania (...) were interviewed about how they perceived their educational program. All interviews were conducted in English with an interpreter. When using an interpreter to conduct interviews, potential threats to validity arise at various points in the interview process. A threat arises when the researcher, whose first language is Swedish, addresses a question in English to the interpreter, another during the translation by the interpreter from English to Lithuanian, and again when the interpreter translates the interviewee’s Lithuanian responses to English. In the last situation, the researcher may not know whether the interpreter has summarized and/or modified the responses. To mitigate these problems, the interpreter should not only have the required linguistic abilities, but also be trained in the research field. The researcher has to be aware of these threats to validity and make efforts to meet and limit their effects. (shrink)

The attribution of beliefs and other propositional attitudes is best understood as a form of measurement, however counter-intuitive this may seem. Measurement theory does not require that the thing measured should be a magnitude, or that the calibration of the measuring instrument should be numerical. It only requires a homomorphism between the represented domain and the representing domain. On this basis, maps measure parts of the world, usually geographical locations, and 'belief' statements measure other parts of the world, namely people's (...) aptitudes. Having outlined an argument for this view, I deal with an obvious objection to it: that self-attribution of belief cannot be an exercise in measurement, because we are all aware, from introspection, that our beliefs have an intrinsically semantic form. Subsequently, I turn to the philosophical and methodological ramifications of the measurement theoretic view. I argue, first, that it undermines at least one version of constructivism and, second, that it provides an effective alternative to the residually Cartesian philosophy that underpins much qualitative research. Like other anti-Cartesian strategies, belief-attribution-as-measurement implies that the objective world is far more knowable than the subjective one, and that reality is ontologically prior to meaning. I regard this result as both plausible and welcome. (shrink)

BackgroundGene drive technologies (GDTs) promote the rapid spread of a particular genetic element within a population of non-human organisms. Potential applications of GDTs include the control of insect vectors, invasive species and agricultural pests. Whether, and if so, under what conditions, GDTs should be deployed is hotly debated. Although broad stances in this debate have been described, the convictions that inform the moral views of the experts shaping these technologies and related policies have not been examined in depth in the (...) academic literature.MethodsIn this qualitative study, we interviewed GDT experts (n = 33) from different disciplines to identify and better understand their moral views regarding these technologies. The pseudonymized transcripts were analyzed thematically.ResultsThe respondents’ moral views were principally influenced by their attitudes towards (1) the uncertainty related to GDTs; (2) the alternatives to which they should be compared; and (3) the role humans should have in nature. Respondents agreed there is epistemic uncertainty related to GDTs, identified similar knowledge gaps, and stressed the importance of realistic expectations in discussions on GDTs. They disagreed about whether uncertainty provides a rationale to refrain from field trials (‘risks of intervention’ stance) or to proceed with phased testing to obtain more knowledge given the harms of the status quo (‘risks of non-intervention’ stance). With regards to alternatives to tackle vector-borne diseases, invasive species and agricultural pests, respondents disagreed about which alternatives should be considered (un)feasible and (in)sufficiently explored: conventional strategies (‘downstream solutions’ stance) or systematic changes to health care, political and agricultural systems (‘upstream solutions’ stance). Finally, respondents held different views on nature and whether the use of GDTs is compatible with humans’ role in nature (‘interference’ stance) or not (‘non-interference stance’).ConclusionsThis interview study helps to disentangle the debate on GDTs by providing a better understanding of the moral views of GDT experts. The obtained insights provide valuable stepping-stones for a constructive debate about underlying value conflicts and call attention to topics that deserve further (normative) reflection. Further evaluation of these issues can facilitate the debate on and responsible development of GDTs. (shrink)

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or the presumed will of (...) patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English (...) or Spanish about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

BackgroundEvaluation of decision-making capacity to consent to medical treatment has proved to be difficult in patients with dementia. Studies showed that physicians are often insufficiently trained in the evaluation of decision-making capacity. In this study, we present findings from a secondary analysis of a qualitative interviews with physicians. These interviews were initially used to assess usability of an instrument for the evaluation of decision-making capacity. By looking at difficult cases of decision-making capacity evaluation in patients with dementia, (...) we provide recommendations for such evaluations in clinical practice.MethodsWe used thematic coding to analyse physicians’ narratives of problematic decision-making capacity evaluations in patients with dementia to uncover challenging issues of decision-making capacity evaluation.ResultsIn this study, decision-making capacity evaluations in patients with dementia were mainly perceived as challenging when they pertained to treatment refusals and treatment unrelated circumstances, such as psychiatric consultation, advance directives, and new living arrangements. Furthermore, the physicians reported training needs regarding situation-independent challenges with decision-making capacity evaluation.ConclusionsUpon further examining self-reported training needs and challenging cases, we have developed recommendations to improve decision-making capacity evaluations in clinical practice. In these recommendations, we argue that being able to evaluate decision-making capacity is an integral part of the informed consent process. (shrink)

In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the (...) experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia. We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis. Eleven general practitioners and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society’s negative view of dementia in combination with the ‘right to die’ view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs. Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration. (shrink)

In the Australian state of Victoria, legislation allowing voluntary assisted dying (VAD) passed through parliament in November 2017. There was then an eighteen-month period before the start date for patient access to VAD, referred to as the “implementation period.” The implementation period was intended to allow time for the relevant government department and affected organizations to develop processes before the Act came into effect in June 2019. This qualitative interview study investigates the perspectives of a multidisciplinary sample of twelve (...) clinicians from a single metropolitan hospital during this implementation period. Maximum variation sampling was utilized to ensure breadth across discipline (medical, nursing, allied health), speciality, and stated level of support for the VAD legislation. Four key themes were identified from the interview data: preparing for the unknown, ethical diversity within the organization, building a respectful culture, and concerns about the inability of the legislated approach to capture clinical nuances. Overall, these clinicians’ workplace experiences during the implementation period were shaped by the ethical diversity within their organization and a sense of uncertainty about how the VAD legislation would integrate with the practical realities of their clinical setting. The concept of “ethical diversity” could be a useful one for supporting staff in an organization during a VAD implementation period. (shrink)

BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional HD-EEG examination (...) at a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.ResultsRegardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.ConclusionWe hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions. (shrink)

Prehospital ambulance based research has unique ethical considerations due to urgency, time limitations and the locations involved. We sought to explore these issues through interviews with experts in this research field. We undertook semi-structured interviews with expert informants, primarily based in the UK, seeking their views and experiences of ethics in ambulance based clinical research. Participants were questioned regarding their experiences of ambulance based research, their opinions on current regulations and guidelines, and views about their general ethical considerations. (...) Participants were chosen because they were actively involved in, or in their expert capacity expressed an interest in, ambulance based research. Fourteen participants were interviewed including principal investigators, researchers, ethicists and medical lawyers. Five major themes were identified: Capacity, Consent, Clinical Considerations, Consultation and Regulation. Questions regarding consent and capacity were foremost in the discussions as all participants highlighted these as areas for concern. The challenges and use of multiple consent models reflected the complexity of research in this environment. The clinical theme referred to the role of paramedics in research and how research involving ambulance services is increasingly informing improvements to patient care and outcomes and reducing the burden on hospital services. Most felt that, although current regulations were fit for purpose, more specific guidance on implementing these in the ambulance setting would be beneficial. This related closely to the theme of consultation, which examined the key role of ethics committees and other regulatory bodies, as well as public engagement. By interviewing experts in research or ethics in this setting we were able to identify key concerns and highlight areas for future development such as improved guidance. (shrink)

Aims: To describe individuals’ perceptions of the activities that take place within the cancer genetics clinic, the relationships between these activities and how these relationships are sustained. Design: Qualitative interview study. Participants: Forty individuals involved in carrying out cancer genetics research in either a clinical (n = 28) or research-only (n = 12) capacity in the UK. Findings: Interviewees perceive research and clinical practice in the subspecialty of cancer genetics as interdependent. The boundary between research and clinical practice is (...) described as vague or blurred, and this ambiguity is regarded as being sustained by a range of methodological, ethical and economic factors. The implications of these findings for the “therapeutic misconception” are explored. It is argued that while research participation is seen as having therapeutic benefit for individual patients, the interviewees are not labouring under any misconceptions about the relationship between research and clinical care. It is suggested that concepts such as the “therapeutic misconception” may have less relevance in highly technological specialities that are characterised by a developing evidence base. (shrink)

This paper presents scientists’ understanding of their roles in society and corresponding responsibilities. It discusses the researchers’ perspective against the background of the contemporary literature on scientific responsibility in the social sciences and philosophy and proposes a heuristic that improves the understanding of the complexity of scientific responsibility. The study is based on qualitative interviews with senior scientists. The presented results show what researchers themselves see as their responsibilities, how they assume them, and what challenges they perceive with (...) respect to their responsibilities. Regarding the latter, the interviewed researchers highlight those aspects of responsibility that go beyond the expertise of their professional role, and thus cannot be carried by scientists alone. For example, scientists alone cannot determine the general direction science takes, or the useful application of their research. The interviewed researchers describe those challenges as responsibilities that must be shared across different societal groups. In the theoretical literature, responsibility has been described as a relation between an actor (who), the action for which someone is responsible (what), and the normative framework against which someone is responsible (why). We will draw on this concept of “relational responsibility” to identify the various actors, normative frameworks, and actions relevant to scientific responsibility. This will serve as a heuristic tool to help identify the entanglement of responsibilities spread across several societal groups. (shrink)

Beauchamp and Childress’ definition of autonomous decision‐making includes the conditions of intentionality, understanding, and non‐control. In genetics, however, a relational conception of autonomy has been increasingly recognized. This article aims to empirically assess aspects of social influence in genetic testing decision‐making and to connect these with principlist and relational theories of autonomy. We interviewed 18 adult genetic counsellees without capacity issues considering predictive genetic testing for cancer predisposition for themselves and two counselling physicians in Switzerland. We conducted a qualitative (...) analysis, building on a grounded theory study about predictive genetic testing decision‐making. We found that some participants agreed to predictive genetic testing predominantly because relatives wanted them to do it, with some even acting contrary to their own convictions. Others, in contrast, based their decision on purely individualistic reasons but expressed difficulties in explaining their decision to their social environment. Healthcare professionals had a critical influence on decision‐making in many cases without being manipulative, as perceived by counsellees. Still, cases of coercion and social pressure occurred within social relationships. In conclusion, predictive genetic testing decision‐making includes relational and individualistic aspects, and both are compatible with autonomous decision‐making. While the principlist and relational notions of autonomy compete on a theoretical level, they are two sides of the same coin when used as analytical lenses for genetic testing decision‐making. Social acceptance of refusal of testing should be improved to mitigate social pressure. Individuals should be encouraged to decide for themselves how much their social environment influences their decision regarding predictive genetic testing. (shrink)

Arab researchers encounter formidable obstacles when conducting and publishing their scientific work. We conducted semi-structured interviews with 17 Arab researchers from various Arab Middle East countries to gain a comprehensive understanding of the difficulties they face in research and publication. We analyzed the transcripts using reflexive thematic analysis. Our findings revealed several key challenges. First, Arab researchers struggle to conduct high-quality research due to limited resources, inadequate funding, and a lack of a supportive research infrastructure. Furthermore, a shortage of (...) teamwork and mentoring diminishes research productivity. Perverse promotion policies, heavy teaching loads, and low salaries force many researchers to seek external income sources, leaving them with insufficient time for research. Regarding publishing in high-impact journals, Arab researchers confront challenges existing of insufficient scientific writing skills, underrepresentation on editorial boards, and unconscious biases against researchers from economically challenged areas. Finally, achieving research integrity is closely tied to lack of access to essential resources. To address these issues, our participants proposed targeted interventions at the institutional and external levels. For example, universities can implement mentoring programs, offer workshops on scientific writing and publishing, and foster a supportive institutional culture for research. Addressing the underrepresentation of Arabic researchers on editorial boards is crucial for equity in global scientific publishing. In conclusion, acknowledging and addressing these challenges will empower Arab researchers, elevate research quality, and promote equitable global scientific collaboration. Our findings provide guidance for universities, governments, and international donors seeking to enhance research and publication practices in the Arab Middle East. (shrink)

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members (...) supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs. (shrink)

Drawing on accounts from interviews with white women, this article explores the production of narratives of the self. It suggests that the story produced of the self is not inevitable and may revolve around notions of sameness and difference that, in turn, depend on the positionality of individuals in terms of normative discourses of `race', class and gender. Sally can be seen to be reciting the process of subjection in the way she creates herself as the subject of a (...) narrative, using tropes of difference and sameness to explain who she is and who she is not. However, for the others, the norms and conventions of lifestory do not conform with their experiences of subjection. This is because, in the case of Madeleine, she does not experience an easily retold sense of herself, while Deborah appears to want to present herself as so inevitable and conforming to dominant norms that there is no story to tell. (shrink)

Hospices consider themselves places that practise a holistic form of terminal care, encompassing physical and psychological symptoms, and also the social and spiritual support for a dying patient. So far, the underlying ethical principles have been treated predominantly in terms of a normative theoretical discussion. The interview study discussed in this paper is a qualitative investigation into general and hospice-related conceptions of morality among full-time and voluntary workers in German inpatient hospices. It examines moral conflicts and efforts leading to (...) their solution. The main ideas identified include moral neutrality towards the patients and their requests, the capability of acceptance, the idea of self-restraint with respect to the dying patient and the principle of respect for the natural course of dying. Essential triggers for moral conflicts were the inadequate education of patients, problems of acceptance in view of incurable disease, and disagreements between members of patients' families. The interviewees expressed their scepticism towards formal institutions of ethical counselling. The study has shown a type of virtue ethics that forms an integral part of the overall concept of hospice care, which cannot be treated separately from a holistic idea of care at the end of life. (shrink)

Overweight and obesity among children and adolescents are global problems of our time. Due to their authority and role modeling, parents play an essential part in the efficacy of prevention and intervention programs. This study assessed the barriers that parents of overweight/obese children face in preventive and interventional health care utilization. Sixteen parents were qualitatively interviewed. A content analysis was performed, and barriers to change were allocated to their stage of change according to the transtheoretical model. Among the main barriers (...) is the underestimation of health risks caused by overweight/obesity in association with diminished problem awareness. Parents seem not necessarily in need of theoretical knowledge for prevention and interventions. They do however need support in evaluating the weight status of their child and the knowledge of whom to turn to for help as well as specific and hands-on possibilities for change. The results extend past studies by adding specific barriers to change that parents commonly experience. Possibilities to address these barriers, e.g., through trainings at the pediatric practice or adoption of conversation techniques, are discussed. Future studies might identify subgroups experiencing specific barriers and thus be able to address these in an individualized way. (shrink)

Background Despite its negative impact on patients and nurses, the use of restraint in somatic health care continues in many settings. Understanding the reasons and justifications for the use of restraint among nurses is crucial in order to manage this challenge. Aim To understand nurses’ justifications for restraint use in neurosurgical care. Research design A qualitative, descriptive design was used. Data were analysed with inductive qualitative content analysis. Participants and research context Semi-structured interviews with 15 nurses working (...) in three neurosurgical departments in Sweden. Ethical considerations Approved by The Regional Ethics Committee, Stockholm, Sweden. Findings The analysis resulted in three categories. The category Patient factors influencing restraint use describes patient factors that trigger restraint, such as a diminished decision-making competence, restlessness, and need for invasive devices. The category Specific reasons for justifying restraint describes reasons for restraining patients, such as restraint being used for the sake of the patient or for the sake of others. The category General reasoning in justifying restraint describes how nurses reason when using restraint, and the decision to use restraint was often based on a consequentialist approach where the nurses’ weighed the pros and cons of different alternatives. Discussion Nurses with experience of restraint use were engaged in a constant process of justifying and balancing different options and actions. Restraint was considered legitimate if the benefit exceeded the suffering, but decisions on which restraint measures to use and when to use them depended on the values of the individual nurse. Conclusion How nurses reason when justifying restraint, why they use restraint, and who they use restraint on must be considered when creating programs and guidelines to reduce the use of restraint and to ensure that when it is used it is used carefully, appropriately, and with respect. (shrink)

BackgroundOne of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it.MethodsWe conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in (...) the United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable.ResultsAll four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants’ comfort and needs at the EOL.ConclusionBecause of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research’s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings. (shrink)

Background Gerontechnologies are increasingly used in the care for older people. Many studies on their acceptability and ethical implications are conducted, but mainly from the perspective of principlism. This narrows our ethical gaze on the implications the use of these technologies have. Research question How do participants speak about the impact that gerontechnologies have on the different phases of care, and care as a process? What are the moral implications from an ethic of care perspective? Research design Secondary analysis of (...) semi-structure interviews, whose segments on specific technologies were analysed through reflexive thematic analysis. Participants and research context Sixty-seven Swiss stakeholders involved in the use of gerontechnologies, including professional caregivers, informal caregivers, and older persons themselves. Ethical considerations The research study was evaluated by the Ethics Commission of Northwest and Central Switzerland (EKNZ). All participants received an information document before the interview date detailing the purpose, procedure, and anonymization measures. After explaining the study during the agreed upon interview time and upon receiving their written informed consent, the interview process began. Findings/results Four themes are identified: Identifying care needs, Taking responsibility, Hands-on work, Responding to care. As part of these themes, many codes highlighting the ambivalent impact of gerontechnologies are created, ranging from ‘Expanded capacity for…identifying care needs’ to ‘Create new & (un)necessary…hands-on work’. The moral implications of these results from the care ethics perspective are discussed, through the ethical elements of: attentiveness, responsibility, competence, and responsiveness. Conclusions The moral implications of gerontechnologies on care phases from the care ethics perspective open up several questions on whether they actually help give care a central role in social life and provide more competent care. (shrink)

BackgroundSevere brain injury is a leading cause of death and disability. Diagnosis and prognostication are difficult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, especially in patients with prolonged disorders of consciousness (PDoC). Yet it is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeutic misconception or false hope.MethodsTo examine these ethical concerns, we conducted semi-structured interviews with caregivers of patients with PDoC who (...) were enrolled in a concurrent neuroimaging research program designed to detect covert consciousness following severe brain injury. Caregivers held surrogate decision-making status for a patient. Interviews were conducted at two time points for each caregiver. The first interview occurred before the disclosure of neuroimaging results. The second occurred after disclosure. Descriptive analysis was applied to the data of four interview topics: (1) expectations for neuroimaging; (2) reactions to evidence of preserved cognition; (3) reactions to null results; and (4) understanding of the results and study.ResultsTwelve caregivers participated in the study; two caregivers shared surrogate decision-making status for one patient with PDoC. Twenty-one interviews were completed; one caregiver declined to participate in the post-disclosure interview. Three patients with PDoC associated with the study displayed evidence of covert consciousness. Overall, caregivers understood the neuroimaging research and results. Caregivers who received results of covert consciousness were generally pleased. However, there was some variation in expectations and reactions to these data and null results.ConclusionThis study, for the first time, reveals caregiver expectations for and reactions to neuroimaging evidence of covert consciousness in patients with PDoC. Caregivers understood the neuroimaging research and results, casting doubt on speculative ethical concerns regarding therapeutic misconception and false hope. However, disclosure of neuroimaging result could be improved. Pre-disclosure consultations might assist professionals in shaping caregiver expectations. Standardization of disclosure might also improve comprehension of the results. (shrink)

BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who either had an (...) AED or were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (shrink)

Objective The UK Human Papillomavirus (HPV) vaccine programme commenced in the autumn of 2008 for year 8 (age 12–13 years) schoolgirls. We examine whether the vaccine should be given when there is a difference of opinion between daughters and parents or guardians. Design Qualitative study using semi-structured interviews. Participants A sample of 25 stakeholders: 14 professionals involved in the development of the HPV vaccination programme and 11 professionals involved in its implementation. Results Overriding the parents' wishes was perceived (...) as problematic and could damage the relationship between school and parents. A number of practical problems were raised in relation to establishing whether parents were genuinely against their daughter receiving the vaccine. Although many respondents recognised that the Gillick guidelines were relevant in establishing whether a girl could provide consent herself, they still felt that there were significant problems in establishing whether girls could be assessed as Gillick competent. In some areas school nurses had been advised not to give the vaccine in the absence of parental consent. None of the respondents suggested that a girl should be vaccinated against her consent even if her parents wanted her to have the vaccine. Conclusions While the Gillick guidelines provide a legal framework to help professionals make judgements about adolescents consenting to medical treatment, in practice there appears to be variable and confused interpretation of this guidance. Improved legal structures, management procedures and professional advice are needed to support those who are assessing competence and establishing consent to vaccinate adolescents in a school setting. (shrink)

This study explores the perceptions of Norwegian nurses who have received assisted dying requests from terminally ill patients. Assisted dying is illegal in Norway, while in some countries, it is an option. Nurses caring for terminally ill patients may experience ethical challenges by receiving requests for euthanasia and assisted suicide. We applied a qualitative research design with a phenomenological hermeneutic approach using open individual interviews. A total of 15 registered nurses employed in pulmonary and oncology wards of three (...) university hospitals and home care in one municipality were recruited. Four themes emerged from the analysis: (1) unprepared for the request; (2) meeting direct, indirect, and nonverbal requests; (3) working in a gray zone, and (4) feeling alone and powerless. The study found that nurses were unsure how to handle such requests due to professional uncertainty about assisted dying. Working in an environment where the topic is taboo made nurses morally uncertain, and some perceived this as moral distress. The hospital chaplain played a significant role in providing support to these nurses. (shrink)

Definition of the problem: Attitudes and practice of doctors regarding physician-assisted suicide (PAS) in patients with AIDS became considerably more liberal over the last 15 years in large U.S. cities. However, it remains an open question how the highly active antiretroviral therapies (HAART) have influenced the situation since the late 1990s. Methods and results: In 1999/2000 a nonrepresentative sample of medical doctors, psychologists, social workers, nurses and other health care professionals (n=69) in San Francisco und New York gave semistructured (...) class='Hi'>interviews about the present situation of PAS in patients with AIDS. On the basis of written protocols a qualitative evaluation of the expert interviews has been performed. The majority of the health care professionals are familiar with PAS in their professional work. With HAART the requests for PAS in gay patients with AIDS dropped rapidly. PAS has not been noted in other subgroups of patients. However, unsolved problems exist in timing, execution and accompaniment of PAS and in competence assessment of PAS patients. No hints of a slippery slope abuse could be identified in the interviews. Conclusion: Although tolerated, the majority of the doctors still feel uncomfortable with PAS and regard PAS as alien to their professional ethos. In practice PAS takes place on request of a subgroup of AIDS patients only. However, the professional experience with PAS in patients with AIDS has changed the attitude of doctors toward a stronger acceptance of their patients autonomy and partnership with them. Open questions remain regarding the competence assessment of seriously ill and dying patients. (shrink)

Disorders of consciousness (DOC) are a family of related neurological syndromes characterized by deficits of varying degrees of wakefulness (e.g., sleep–wake cycles and arousal) or awareness (e.g., reacting to stimuli, interacting with the environment). Although coma rarely persists for more than a few weeks, some patients remain in a subsequent vegetative state or a minimally conscious state for months or years. Caring for patients with DOC raises ethical questions, but the perspectives of healthcare providers on these questions remain poorly documented. (...) We conducted a qualitative study involving healthcare providers with different backgrounds. Semistructured interviews were used to explore attitudes toward ethical issues. We found that contextual (e.g., time, resource allocation) and relational aspects (e.g., communication process, families) shaped how ethical challenges surfaced and were managed. We call for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs. (shrink)

Hospize verstehen sich als Orte einer ganzheitlichen Sterbebegleitung, welche nicht allein die Behandlung körperlicher und psychischer Symptome, sondern auch die soziale und spirituelle Betreuung der Sterbenden beinhaltet. Eine zentrale Bedeutung innerhalb dieser umfassenden Begleitung am Lebensende hat die Idee der Selbstbestimmung. Dem Hospizgast soll ermöglicht werden, im Sinne einer größtmöglichen Autonomie über die eigenen Belange bis zuletzt selbst entscheiden zu können. Diese zentrale Zielsetzung der Hospizarbeit wurde in der Literatur bisher überwiegend in theoretisch-programmatischer Weise thematisiert, es liegen jedoch kaum Untersuchungen (...) zu der Frage vor, wie die Idee der „Selbstbestimmung bis zuletzt“ im Alltag der Hospize praktisch umgesetzt wird. Über die besonderen Umstände der Pflege in stationären Hospizen hinaus ist der hier zugrunde gelegte Begriff von Autonomie auch von grundsätzlichem medizinethischen Interesse. Das ganzheitlich-palliative Konzept von Behandlung und Pflege, welches bereits im Hospiz als Institution fest verankert ist, legt nahe, dass die Idee der Selbstbestimmung in diesem Umfeld anders konzeptualisiert wird als im Bereich der „klassischen“, zumeist kurativ orientierten Medizin. Die qualitative Interviewstudie mit haupt- und ehrenamtlichen Mitarbeiterinnen und Mitarbeitern konnte zeigen, dass in stationären Hospizen ein Konzept von Selbstbestimmung vertreten wird, welches über rein medizinische Entscheidungen weit hinausgeht. Zugleich konnte aber auch herausgearbeitet werden, wo nach Ansicht der Mitarbeiterinnen und Mitarbeiter mögliche Grenzen der Selbstbestimmung des Gastes im Hospiz liegen. (shrink)

Hospize verstehen sich als Orte einer ganzheitlichen Sterbebegleitung, welche nicht allein die Behandlung körperlicher und psychischer Symptome, sondern auch die soziale und spirituelle Betreuung der Sterbenden beinhaltet. Eine zentrale Bedeutung innerhalb dieser umfassenden Begleitung am Lebensende hat die Idee der Selbstbestimmung. Dem Hospizgast soll ermöglicht werden, im Sinne einer größtmöglichen Autonomie über die eigenen Belange bis zuletzt selbst entscheiden zu können. Diese zentrale Zielsetzung der Hospizarbeit wurde in der Literatur bisher überwiegend in theoretisch-programmatischer Weise thematisiert, es liegen jedoch kaum Untersuchungen (...) zu der Frage vor, wie die Idee der „Selbstbestimmung bis zuletzt“ im Alltag der Hospize praktisch umgesetzt wird. Über die besonderen Umstände der Pflege in stationären Hospizen hinaus ist der hier zugrunde gelegte Begriff von Autonomie auch von grundsätzlichem medizinethischen Interesse. Das ganzheitlich-palliative Konzept von Behandlung und Pflege, welches bereits im Hospiz als Institution fest verankert ist, legt nahe, dass die Idee der Selbstbestimmung in diesem Umfeld anders konzeptualisiert wird als im Bereich der „klassischen“, zumeist kurativ orientierten Medizin. Die qualitative Interviewstudie mit haupt- und ehrenamtlichen Mitarbeiterinnen und Mitarbeitern konnte zeigen, dass in stationären Hospizen ein Konzept von Selbstbestimmung vertreten wird, welches über rein medizinische Entscheidungen weit hinausgeht. Zugleich konnte aber auch herausgearbeitet werden, wo nach Ansicht der Mitarbeiterinnen und Mitarbeiter mögliche Grenzen der Selbstbestimmung des Gastes im Hospiz liegen. (shrink)

Zusammenfassung. Bisher fehlen Studien zur Einstellung und Praxis von Ärzten zur Beihilfe zum Suizid (”physician assisted suicide”: PAS) bei schwerkranken schwulen AIDS-Patienten nach Verbesserung der Behandlungsmöglichkeiten (”highly active antiretroviral therapies”: HAART). Von August 1999 bis Februar 2000 wurde in den Großräumen San Francisco und New York eine nicht repräsentative Stichprobe von Ärzten, Psychologen, Sozialarbeitern, Pflegepersonal und anderen Gesundheitsberufen (n=69) in semistrukturierten Interviews über ihre ethischen Bewertung des PAS bei AIDS-Patienten befragt. Die Mehrheit der Befragten kennt Gespräche über PAS aus (...) der professionellen Arbeit, ein Teil der befragten Ärzte hat selbst ärztliche Beihilfe zum Suizid geleistet. Durch HAART hat die Häufigkeit von Patientenwünschen nach PAS abgenommen, eine Ausweitung von PAS auf andere Patientengruppen wurde nicht beobachtet. In der Praxis bestehen weiterhin ungelöste Probleme bei der Suizidbegleitung, dem „richtigen Zeitpunkt”, der Arzt-Patient-Kommunikation und der Beurteilung der Selbstbestimmungsfähigkeit. Hinweise auf einen dammbruchartigen Missbrauch (”slippery slope”) wurden nicht gefunden. Trotz der hohen Akzeptanz bei AIDS-Kranken bewertet die Mehrzahl der Ärzte PAS weiterhin skeptisch. PAS findet nur auf expliziten Wunsch einer Untergruppe von AIDS- Patienten statt, hat aber den Stellenwert der Patientenselbstbestimmung in der Medizin generell erhöht. Weiterer Forschungsbedarf besteht bei der sicheren Feststellung von Selbstbestimmungsfähigkeit bei schwerkranken und sterbenden Patienten. (shrink)

Zusammenfassung. Bisher fehlen Studien zur Einstellung und Praxis von Ärzten zur Beihilfe zum Suizid (”physician assisted suicide”: PAS) bei schwerkranken schwulen AIDS-Patienten nach Verbesserung der Behandlungsmöglichkeiten (”highly active antiretroviral therapies”: HAART). Von August 1999 bis Februar 2000 wurde in den Großräumen San Francisco und New York eine nicht repräsentative Stichprobe von Ärzten, Psychologen, Sozialarbeitern, Pflegepersonal und anderen Gesundheitsberufen (n=69) in semistrukturierten Interviews über ihre ethischen Bewertung des PAS bei AIDS-Patienten befragt. Die Mehrheit der Befragten kennt Gespräche über PAS aus (...) der professionellen Arbeit, ein Teil der befragten Ärzte hat selbst ärztliche Beihilfe zum Suizid geleistet. Durch HAART hat die Häufigkeit von Patientenwünschen nach PAS abgenommen, eine Ausweitung von PAS auf andere Patientengruppen wurde nicht beobachtet. In der Praxis bestehen weiterhin ungelöste Probleme bei der Suizidbegleitung, dem „richtigen Zeitpunkt”, der Arzt-Patient-Kommunikation und der Beurteilung der Selbstbestimmungsfähigkeit. Hinweise auf einen dammbruchartigen Missbrauch (”slippery slope”) wurden nicht gefunden. Trotz der hohen Akzeptanz bei AIDS-Kranken bewertet die Mehrzahl der Ärzte PAS weiterhin skeptisch. PAS findet nur auf expliziten Wunsch einer Untergruppe von AIDS- Patienten statt, hat aber den Stellenwert der Patientenselbstbestimmung in der Medizin generell erhöht. Weiterer Forschungsbedarf besteht bei der sicheren Feststellung von Selbstbestimmungsfähigkeit bei schwerkranken und sterbenden Patienten. (shrink)

BackgroundIn gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role HCPs play in assessing (...) GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands.MethodsIn this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents’ explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged.ResultsRespondents’ ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC’s guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI.ConclusionsThis interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise. (shrink)

Objectives“Attachment difficulties” is an umbrella term often used to describe various forms of non-secure attachment. Differentiating “attachment difficulties” from autism spectrum disorder and attention deficit hyperactivity disorder has been characterized as challenging. Few studies have explored how this happens in practice, from the perspective of professionals.DesignQualitative study.MethodsWe conducted in-depth semi-structured interviews with healthcare professionals from five NHS Foundation Trusts in the United Kingdom. Participants were recruited using a combination of snowballing, convenience and purposive sampling. Data were analyzed using a (...) thematic approach.ResultsWe identified six interrelated themes that might reflect difficulties with differential conceptualization. These include: a clinical lexicon of attachment; approaching attachment with caution; contextual factors; perceived characteristic behaviors; assessing attachment and adjacent supports; spotlighting intervention and dual conceptualization.ConclusionOur results indicate some of the ways suspicions around attachment are raised in practice. We advocate for more dialogue between research and practice communities on issues of differential conceptualization. We call for collaboration between a panel of experts consisting of attachment and neurodevelopmental orientated practitioners and researchers, to clarify issues around differentiating between attachment difficulties, ASD, and ADHD. (shrink)

Direct-to-consumer (DTC) genetic tests (GT) enable consumers to access a wide range of GT, without involving a healthcare professional, promoting an increasing disassociation of genetics from the clinical context. This study explores, through semi-structured interviews, the experiences and attitudes of European clinical geneticists towards DTCGT. Our results indicate that the participants have limited experience of consultations with patients regarding such tests. The majority of participants stated that consumers purchased tests out of curiosity and sought a general interpretation of test (...) results by a healthcare professional. Most respondents were skeptical of the quality of tests, especially regarding their clinical utility. The participants supported the importance of medical supervision and genetic counseling in this context. Finally, most respondents considered it their duty to accept consultations concerning DTCGT results. However, due to concerns over limited time and potential downstream costs, some participants supported that a prioritization system based on guidelines would be necessary. (shrink)

Background Ethical and scientific principles require that clinical trials address an important question and have the resources needed to complete the study. However, there are no clear standards for review that would ensure that these principles are upheld.Methods We conducted semi-structured interviews with a convenience sample of nineteen experts in clinical trial design, conduct, and/or oversight to elucidate current practice and identify areas of need with respect to ensuring the scientific value and feasibility of clinical trials prior to initiation (...) and while ongoing. We used a priori and grounded theory to analyze the data and constant comparative method to induce higher order themes.Results Interviewees perceived determination of scientific value as the responsibility of the investigator and, secondarily, other parties who review or oversee research. Interviewees reported that ongoing trials are rarely reevaluated due to emerging evidence from external sources, evaluation is complex, and there would be value in the development of standards for monitoring and evaluating evidence systematically. Investigators, IRBs, and/or data monitoring committees (DMCs) could undertake these responsibilities. Feasibility assessments are performed but are typically inadequate; potential solutions are unclear.Conclusions There are three domains where current approaches are suboptimal and in which further guidance is needed. First, who has the responsibility for conducting scientific review, whether it be the investigator, IRB, and/or DMC is often unclear. Second, the standards for scientific review (e.g., appropriate search terms, data sources, and analytic plan) should be defined. Third, guidance is needed on the evaluation of ongoing studies in light of potentially new and evolving evidence, with particular reference to evidence from outside the trial itself. (shrink)

Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more (...) recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. (shrink)

This study explores how qualitative health researchers navigate the demands of medical research ethics committees in Germany where qualitative research is subject to approval only when it is conducted in medical contexts. We present the results of a grounded theory study to investigate qualitative health researchers’ experiences with procedural ethics and the strategies they adopt to navigate its demands. Our analysis revealed six dimensions of experience and three strategies adopted by researchers to navigate the demands of medical (...) research ethics committees. All participants agreed that research ethics is of high importance in qualitative health research, but strategies to navigate the demands of medical research ethics committees ranged from avoiding, and adapting, to transforming the procedures of ethics review. Based on our findings, we provide recommendations for improving the ethics review of qualitative health research. (shrink)

The article focuses on a method for collecting qualitative data. The method is the asynchronous email interview. The authors assess the advantages, challenges and best practices of the asynchronous email interview method. They base their assessment on the academic literature and their own experiences using this data collection method in qualitative research on women who had experienced perinatal loss. The asynchronous email interview will never fully replace traditional face-to-face interviews, but it could gain a solid position as (...) a qualitative research method thanks to its unique benefits. (shrink)

Qualitative research has tended to evoke rather stereotyped objections from the mainstream of social science. Ten standardized responses to the stimulus "qualitative research interview" are discussed: it is not scientific, not objective, not trustworthy, nor reliable, not intersubjective, not a formalized method, not hypothesis testing, not quantitative, not generalizable, and not valid. With the objections to qualitative interviews highly predictable, they may be taken into account when designing, reporting, and defending an interview study. As a help (...) for new qualitative researchers, some of the issues, concepts, and arguments involved are outlined, and the relevancy of the standard objections is discussed. Alternative conceptions of qualitative research, coming from phenomenological and hermeneutical traditions, are suggested. The qualitative interview based on conversation and interaction here appears as a privileged access to a linguistically constituted social world. (shrink)

ABSTRACT Objectives: the purpose of this study is to explore laypersons’ attitudes towards and experiences of medical research, and to compare them with those of physicians in Japan. Designs and Participants: fourteen Japanese adults from the general public and seven physicians participated in one of three focus interviews. Setting: Osaka, Japan. Results: trust and distrust in the physician by whom the participants were invited to participate in research played a considerable role in their decisions about participation. That the participants (...) felt an obligation to participate was also expressed. The lay participants perceived medical research as something entirely outside of their world. A greater willingness to volunteer for research was expressed if there were direct benefits to themselves or their families. Research methods such as use of placebos, double blinds, and randomisations seemed to cause negative attitudes to medical research. All physicians were convinced of the need for medical research, including double‐blinded randomised control trials, and its significant role in medical progress. Most physicians thought that the greater awareness of the need for medical research in the community and a better understanding of the psychology of potential research participants were necessary and urgent. Conclusions: there is a good possibility that the lay public and medical professionals have sharply different beliefs about and attitudes towards every aspect of medical research. Building up a better and equal patient‐doctor relationship based on trust is a key issue in medical research, and it is mandatory to fill the gap in perception regarding medical research between them through fully informed debates. (shrink)

BackgroundContradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.MethodsA descriptive qualitative study. The data were collected (...) in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.ResultsThe interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.ConclusionThe open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. (shrink)