The nature of autonomy when living with dementia: A Q-study (v.1)
Research type
Research Study
Full title
The nature of autonomy when living with dementia: A Q-method investigation
IRAS ID
206282
Contact name
Beth Greenhill
Contact email
Duration of Study in the UK
0 years, 10 months, 30 days
Research summary
The nature of autonomy when living with dementia: A Q-method investigation
Human rights based approaches to healthcare help to ensure that patient rights are protected. However, the ideas promoted through these approaches are often based on definitions that do not necessarily come from service users. This study will explore how people living with dementia at home understand the term ‘autonomy’, from their own point of view. In this case, ‘people living with dementia’ includes individuals who have received a diagnosis and their closest relatives or carers.
Losing autonomy is considered to be a particular challenge in the experience of living with dementia. In the past, people living with dementia were thought to be unable to exercise autonomy, for example to make decisions about their healthcare. Professionals do not always agree what supporting autonomy for people living with dementia should be about. Thinking about how to support people with dementia as human rights bearers demands a better understanding of service user and carer views.
The study will use interviews and a sorting task in a Q-study to explore what autonomy means to people living with dementia. Interviews with professionals and people living with dementia will generate different statements about autonomy. These will be compiled along with statements from academic and popular media and organised into themes. A selection of statements representing those themes will be used in the sorting task. During the sorting task, each participant decides how strongly they agree or disagree with each statement. A statistical analysis will help to identify any patterns that emerge in the way people sort the statements, and therefore think, about autonomy.
The study will be funded by the University of Liverpool. The results will be shared via a journal article, thesis report and oral presentation at conference and a local service user forum.
REC name
North West - Haydock Research Ethics Committee
REC reference
16/NW/0528
Date of REC Opinion
5 Aug 2016
REC opinion
Further Information Favourable Opinion