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P04a


Mobilizing methods in research with cognitively impaired participants: creative approaches, ethical challenges and translation processes I 
Convenors:
Cristina Douglas (University of Aberdeen)
Barbara Pieta (Max Planck Institute for Social Anthropology)
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Format :
Panel
Sessions:
Friday 21 January, -
Time zone: Europe/London

Short Abstract:

This panel explores challenges and possibilities arising from ethnographic and creative methods in research with cognitively impaired people with limited capacity to consent, before and throughout the Covid-19 crisis. What methodologies and modes of translation can make this research more inclusive?

Long Abstract:

Research with cognitively impaired participants (e.g., dementia, autism) covers a variety of disciplines and methodologies, from clinical research and social sciences to health and community care. Such research involves a multitude of participants, stakeholders, gatekeepers and ethics bodies. Due to participants' diminished verbal/cognitive capacities and often restricted physical mobility, finding creative ways of engagement is crucial. In practice, in some countries, research involving adults lacking capacity of consent is highly regulated by ethical bodies, which follow the 'golden standard' of clinical research. Sometimes this translates in favouring quantitative over qualitative methodologies, standardised methods and instruments over creative approaches, clinical and medical research over social sciences or arts. In the context of COVID-19 pandemic, the restrictions on conducting research with cognitively impaired people have become even more accentuated by limitations imposed on in-person methodologies, often the only ones that can involve participants with advanced cognitive impairment. Our panel invites contributions that address various aspects - theoretical, legal, ethical, practical - of research methodologies conducted with cognitively impaired people, before and during COVID-19 pandemic: what methodologies may promote more inclusive research for people with cognitive impairment; what challenges and limitations arise from the use of various methods; what solutions can we offer; how do we negotiate and translate methods we employ to satisfy ethical bodies, institutional risk assessment, including legal liability, without endangering disciplinary/ethical specificity or trivialising it; how do we explain/translate our research and methodologies to participants with limited cognitive abilities, especially when documentation has to follow a rigid legal language?

Accepted papers:

Session 1 Friday 21 January, 2022, -