Interviews on End-of-Life Care With Older People

Abstract

Qualitative research provides important insights into the experiences and perspectives of older people on end-of-life issues, but such research is methodologically and ethically complex. We offer a set of reflections from six end-of-life care studies conducted with older people in four European countries: Belgium, Germany, the Netherlands, and the United Kingdom. The reflection process was informed by four full-day meetings between the authors and referral to sources including the study interview guides, summary "pen portraits" about key issues encountered in the interviews, and key sections of the interview transcripts. We identified as major challenges accessing people, the introduction of end-of-life issues in an interview, managing emotions, the presence of companions, and reciprocity. Formal ethical review committees rarely take into account these complex issues. We concluded that is it necessary to maintain an ongoing reflexive stance to enhance qualitative research practice in the intersecting fields of aging and end-of-life studies.

Exploring how ward staff engage with the implementation of a patient safety intervention: a UK-based qualitative process evaluation

“…Pen portraits have been used previously in applied health research in fields as diverse as: end of life care,15 vulnerable old people being enabled to keep warm in their homes16 and sleeping practices among homeless drug users 17. Previously, they have provided a narrative account of a ‘typical’ participant in qualitative studies or as an analytic aide memoir.…”

An evaluation of research capacity building from the Cancer Experiences Collaborative

“…International-level research experience has also been gained through increasing links with international scholars and the development of collaborative initiatives. Examples of these include: a joint workshop with researchers from The Netherlands/Belgium which led to the development of a number of grant proposals, and strengthened epidemiological/public health expertise leading to an international study on the perspectives of older people on end-of-life care,22 and an ongoing international study which examines the contentious issue of palliative sedation in end-of-life decision making 23…”

Procedure versus process: ethical paradigms and the conduct of qualitative research

“…Somewhat paradoxically, recognition of the value of qualitative methodologies in health services research [23-27] parallels the evolution of research governance frameworks which have increasingly constrained their practice. It is argued that although the risks and potential harms of qualitative research are minimal compared to experimental or drugs trials, all studies have been subject to review within the methodological and risk assessment frameworks applied to biomedical and clinical research [4,9,22,28-31]. The need to streamline processes of ethical regulation and review of research has been recognised and processes of consultation and reform are currently in process in countries across Europe, America and Australia [12,32-35] In the UK the Health Research Agency (HRA) was established in 2011 to expedite this process [36-38].…”