Navigating Person-Centred Ethics: A Sensory Ethnographic Study Involving Older People Living With Dementia and Family Carers

Abstract

Exploring subjective experiences of people living with dementia through qualitative research has become increasingly common in recent decades. Nonetheless, researchers have shared a number of ethical challenges in involving people living with dementia in research. A concept that has been influential in discussions about ethics within the field of dementia care, in particular, is person-centredness. A person-centred approach reflects values of respect for personhood and the rights of a person and of building mutual trust and understanding. This chapter presents my experience of adopting person-centred ethical practices in a sensory ethnographic study involving older adults living with dementia. I highlight person-centred ethical considerations at the design stage of my study and occasions during the conduct of my research when research methods and processes were adapted to further meet the needs of the participants. A person-centred approach required that I continually assessed the need to make ethical decisions in every aspect of the research process throughout its duration. Building and drawing on positive researcher–participant relationships to inform those decisions and an adaptable research design allowing research practices to be adapted in situ were therefore essential.

Citation

Mossabir, R. (2023), "Navigating Person-Centred Ethics: A Sensory Ethnographic Study Involving Older People Living With Dementia and Family Carers", O'Sullivan, R. (Ed.) Ethics and Integrity in Research with Older People and Service Users (Advances in Research Ethics and Integrity, Vol. 9), Emerald Publishing Limited, Leeds, pp. 21-37. https://doi.org/10.1108/S2398-601820230000009002