Ethnography in Dementia Care Research: Observations on Ability and Capacity

Abstract

Discipline: D4 [please do not alter] Dementia Studies Sub-discipline General Health and Social Care [SD-Hlth-1] Academic Level Postgraduate Contributor BiographiesKatherine Ludwin is a researcher in Dementia Studies at the University of Bradford. She has a PhD in Sociology and Politics from Birkbeck College, University of London, which was located in gender studies and explored expectations related to family norms. She has worked on several dementia research projects and is interested in creative methods and the significance of identity and difference in the livedexperience of dementia. 2Andrea Capstick is a Senior Lecturer in Dementia Studies at the University of Bradford. She holds a Doctorate in Education (EdD) for her work on the use of film and narrative biography in teaching dementia studies, and has published on a variety of subjects including service user involvement in dementia care education; arts based approaches to teaching and learning, and the ethics of visual research. In 2012 -together with Dr John Chatwin -she was awarded funding by the National Institute for Health Research's School for Social Care Research to study the impact of participatory film-making on social participation and well-being for people with dementia living in long-term care. Published Articles AbstractThis case outlines the rationale and methods used when carrying out ethnographic fieldwork in a care home environment with research participants who were living with a dementia diagnosis. Although concerns had been raised at ethics approval about the use of such methods -visual ethnography in particular -we found that there were ethical benefits for the participants whose capacity for research participation, and for social participation generally, was, in every case, higher than anticipated at the outset. By comparison we found that formal methods for assessing ability to give informed consent often appeared to create excess disability, and to exacerbate ill-being for people with dementia. The case draws on specific examples to show how issues related to methods and to ethical conduct of research are frequently intertwined, and should be considered together rather than in isolation. 3 Learning OutcomesBy the end of the case, students should:

The Political Life of Research Ethics Committees And What It Means for Ethnographic Research

“…Current debates on ethics in ethnographic (and, more broadly, qualitative) research have been discussed in two main directions: either in regards to researcher-participants relations (e.g., Ludwin and Capstick 2017;Hillman 2017;Eilat 2023;Pieta and Diodati 2023;Groot et al 2023); or in relation to researchers' critical reflections on the inadequacies of research ethics review performed by RECs or other nation correspondents arising after approval and fieldwork completion (Crabtree 2013;Tauzer, Cowdell and Nässén 2023;Balkin et al 2023; for more theoretical discussions on the legal and regulatory frameworks, see Fletcher 2021Fletcher , 2023. Some scholars specifically argue that ethnographic research regarding people living with dementia is not only a method of collecting and analysing data, but also a form of practising ethics (e.g., Ludwin and Capstick 2017;Glavind and Morgensen 2022). However, most ethnographic studies involving people living with dementia just briefly state that their study has received ethics approval, even when this appears to have been substantial in shaping the approach and the research design (e.g., Featherstone and Northcott 2020).…”

Understanding interaction in problematic dementia and social care encounters: Protocol for a micro-level study combining video-ethnography and Conversation Analysis (CA)

“…The makeup of individual research sites will influence the number of participants involved. As an approximate guide, based on previous studies conducted by the research team [18][19][20], and comparable video-ethnographic / CA based studies [21,22], we aim to include up to 20 carestaff and 60 residents and other stakeholders in the study.…”