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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]

Background: Affected family members (AFMs) play an important role in supporting relatives with alcohol and/or other drug (AOD) misuse. However, they frequently lack support and experience considerable challenges to their own well‐being. Aim: To explore the experience of AFMs who support a close relative with AOD misuse. Method: Thirty‐one AFMs were recruited through AOD helplines and through their social media accounts in the Australian state of Victoria. A semi‐structured interview guide was used to inform data collection, focusing on their general experiences, impact of support‐giving and support options. Interviews were audio‐recorded and conducted by telephone. Results: One overarching theme and six related subthemes were abstracted from the data. The overarching theme was conceptualised as Feeling overwhelmed by, and struggling with, the experience. Subthemes were as follows: Emotionally draining and exhausting, Maintaining constant vigilance: curbing social activities, Grappling with the financial impact, Struggling to cope with harmful family dynamics, Avoiding and containing aggression and Fearfulness and hopelessness about the future. Conclusion: Affected family members experienced wide‐ranging harms, which affected their emotional, social and financial well‐being, safety and family dynamics, and instilled a persistent sense of fearfulness and hopelessness about the future. The findings have implications for mental health nurses and other clinicians in AOD services to identify AFMs' needs and provide them with timely, accessible and appropriate support to help sustain their important role. [ABSTRACT FROM AUTHOR]