October/November 2023 webinar surrounding the special issue Ethical Concerns: Envisioning Ethnographic Fieldwork with Cognitively Impaired Older Adults has been organized in collaboration with the issue’s co-editors Barbara Pieta (Max Planck Institute for Social Anthropology), Cristina Douglas (University of Aberdeen), Matthew Lariviere (University of Bristol) and Maria Vesperi (New College of Florida)
Seven papers making up this collection were presented (6 minutes per presentation), followed by Q&A. Through cross-country comparison, the presenters illuminated various ways in which national and culturally embedded approaches to ethics review and consent shape ethnographic research involving older adults who live with cognitively impairing conditions, e.g., dementia. The discussion focused on, inter alia, (a) how the lack of capacity to consent to research participation is “enacted” (Mol 2002) through various ethical regimes regulating ethnographic fieldwork with older adults living with cognitively impairing conditions; (b) what are the socio-political institutions, social networks and materialities that affect researchers’ “doing ethics” before, during and after ethnographic fieldwork; (c) how we as part of the community of practice in general, and the Ethics Collective of AgeNet in particular, can respond to the challenges related to navigating procedural and situated ethics in ethnographic research involving participants living with cognitive impairment, such as dementia, what methods, concepts and epistemologies can we mobilize to these ends and with what concequences for the ethics of our discipline?
Check the speakers line-up below and read the published papers (click on the titles to get access):
Comments from the editors of the Special Issue: Barbara Pieta (Max Planck Institute for Social Anthropology), Cristina Douglas (University of Aberdeen) and Matthew Lariviere (Northumbria University)
Ethical regimes inscribing notions of cognitive impairment and personhood
‘The shadow of dementia: Listening to undecidability in ethnographic interviews with persons suspecting possible dementia‘ by Shvat Eilat (Tel Aviv University, Israel)
‘The ethnographer, the research participants and the meaningful others: Gray zones of relationality and the ethics of ethnographic dementia research’ by Barbara Pieta (Max Planck Institute for Social Anthropology) and Francesco Diodati (Università Cattolica del Sacro Cuore)
Resisting “ethics creep”
‘Regulating the disfrenchised: Reciprocity and resistance under the Mental Capacity Act’ by James Rupert Fletcher (University of Manchester)
‘From ethical approval to an ethics of care: Considerations for the inclusion of older adults in ethnographic research from the perspective of a ‘humanisation of care framework’ by Jayme Tauzer (Birmingham City University) Fiona Cowdell (Birmingham City University), Kristina Nässén (University of Borås)
Ethics and the impossibility of the consent form: Ethnography in a Danish nursing home by Emma Jelstrup Balkin (Aalborg University), Mette Geil Kollerup (University College of Northern Denmark), Ingjerd Gåre Kymre (Nord University), Bente Martinsen (Århus University) , Mette Grønkjær (Aalborg University Hospital and Aalborg University)
Methods
‘Expanding the ethnographic toolkit: Using medical documents to include kinless older adults living with dementia in qualitative research’ by Lily N. Shapiro (Kaiser Permanente Washington Health Research Institute), Marlaine Figueroa Gray (Kaiser Permanente Washington Health Research Institute), Callie Freitag (University of Washington), Priyanka Taneja (Pacific Northwest University of Health Sciences), Hitomi Kariya (University of Washington), Paul K. Crane (University of Washington), Ann M. O’Hare (University of Washington and VA Puget Sound Health Care System), Elizabeth K. Vig (University of Washington and VA Puget Sound Health Care System), Janelle S. Taylor (University of Toronto).
‘In search of epistemic justice. Dialogical reflection of researchers on situated ethics in studies with people living with language and/or cognitive impairment‘ by Barbara Groot (Leiden University Medical Centre, Leyden Academy on Vitality and Ageing), Annette Hendrikx (Werkplaats Creatieve Ontmoetingen), Elena Bendien (Onderzoek in Professionele Praktijken), Susan Woelders (Onderzoek in Professionele Praktijken), Lieke de Kock (Leiden University Medical Centre, Leyden Academy on Vitality and Ageing), Tineke Abma (Leiden University Medical Centre, Leyden Academy on Vitality and Ageing, Vrije Universiteit Amsterdam)