Background:The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied.Purpose:This study examined the moral experiences of caregivers related to challenging behaviours’ management and alternatives to control measures.Research design:Using Charles Taylor’s hermeneutic framework, a 2-month focused ethnography with a participatory (...) approach was used.Participants and research context:Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity.Ethical considerations:The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants.Findings:By accounting for caregivers’ moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver’s vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures.Discussion:A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability.Conclusion:The recognition of caregiver’s vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers’ self-concern can be understood as fostering mutual respect. (shrink)

This article describes how ethical guidelines have been applied while interviewing psychiatric patients who were recovering from mental illness, especially from psychosis, to allow nurses to understand these patients’ experiences. Because psychiatric patients are vulnerable, their participation in research involves ethical dilemmas, such as voluntary consent, legal capacity to consent, freedom of choice, and sufficient knowledge and comprehension. The first part of this article describes the most important ethical guidelines concerning human research. These have been published by different organizations, departments, (...) committees and commissions for the purpose of protecting human rights and dignity whenever research participants are vulnerable persons or their capacity to consent is limited. At present, however, no special regulations govern research involving adults who have been diagnosed with a condition characterized by mental impairment. Furthermore, a relatively small body of research has documented the effects of various disorders on decision-making capacity per se. One basic moral and policy question is whether these individuals should ever be involved in research. The second part of this article concentrates on how the investigator made sure that participating patients had understood their role in this particular piece of nursing research. During the interviews the investigator noticed that some ethical dilemmas required further study and debate because of the lack of consensus on the proposed regulatory provisions on research involving institutionalized persons and their ability to make an informed and voluntary decision. (shrink)

It is rare to find honest accounts of the difficulties and dilemmas encountered when conducting sensitive research with vulnerable research populations. This account explores some of the ethical issues raised by a qualitative interview study with lesbians and gay men about their experiences of nursing care. There is tension between the moral duty to conduct research with vulnerable and stigmatized groups in order to improve care, and the inevitable lack of resources that go with such a venture. This increases the (...) risk of harm during the process of research. The risk of harm to both the researchers and the researched is explored and the need for a support structure for both groups is raised. There is a pressing need to develop further understanding about the ways in which the dissemination of research can potentially harm already vulnerable research populations. (shrink)

This paper reports a literature review on the topic of ethical issues in in-depth interviews. The review returned three types of article: general discussion, issues in particular studies, and studies of interview-based research ethics. Whilst many of the issues discussed in these articles are generic to research ethics, such as confidentiality, they often had particular manifestations in this type of research. For example, privacy was a significant problem as interviews sometimes probe unexpected areas. For similar reasons, it is difficult to (...) give full information of the nature of a particular interview at the outset, hence informed consent is problematic. Where a pair is interviewed (such as carer and cared-for) there are major difficulties in maintaining confidentiality and protecting privacy. The potential for interviews to harm participants emotionally is noted in some papers, although this is often set against potential therapeutic benefit. As well as these generic issues, there are some ethical issues fairly specific to in-depth interviews. The problem of dual role is noted in many papers. It can take many forms: an interviewer might be nurse and researcher, scientist and counsellor, or reporter and evangelist. There are other specific issues such as taking sides in an interview, and protecting vulnerable groups. Little specific study of the ethics of in-depth interviews has taken place. However, that which has shows some important findings. For example, one study shows participants are not averse to discussing painful issues provided they feel the study is worthwhile. Some papers make recommendations for researchers. One such is that they should consider using a model of continuous (or process) consent rather than viewing consent as occurring once, at signature, prior to the interview. However, there is a need for further study of this area, both philosophical and empirical. (shrink)

This study was designed to explore the concept of witnessed resuscitation. This was achieved through a serial approach to conceptually based research that systematically and incrementally developed understanding of the meaning of witnessed resuscitation in the context of emergency resuscitative care for adult victims of cardiorespiratory arrest. Theoretical investigation provided a strong conceptual foundation of existing knowledge and gave direction for further inquiry. Existential investigation comprised a hermeneuticphenomenological study to explore the phenomenon of lay presence during an adult cardiopulmonary resuscitation (...) attempt. Lived-experience material was subjected to thematic analysis and was revealing of five concepts that represented the essential nature of the lived experience. The concept of exposure emerged as the essence of this phenomenon. Research findings derived during theoretical and existential investigation were compared by adapting a method of template comparison. This process culminated in a synthesised conceptualisation of the meaning of witnessed resuscitation of a higher level of abstraction. Ongoing research is needed to determine whether this ‘state of the art’ conceptualisation of witnessed resuscitation holds its boundaries when applied to alternative phenomena, contexts and disciplines. Priority should be given to exploring the application of this concept in the context of patient and family-centred end-of-life care. (shrink)