Investigating the management of refusal of care: people with dementia
Research type
Research Study
Full title
Underserved and overlooked: Investigating the management of refusal of care in people with dementia admitted to hospital with an acute condition
IRAS ID
160678
Contact name
Katie Featherstone
Contact email
Duration of Study in the UK
2 years, 5 months, 31 days
Research summary
This study is an investigation of refusal and resistance to food, drink and medicines by people with dementia (PWD) who have been admitted to hospital for an additional acute health condition. It is estimated that PWD are currently using up to one quarter of hospital beds at any one time, however, this group do not fit comfortably within hospitals.
Common features of dementia (reported in up to 90% of PWD) include behavioural and psychological symptoms (BPSD) and we focus on examining a common feature of BPSD which is managed by healthcare workers on a daily basis; refusal of care. Professional and family carers can find refusal and resistance to care time consuming and difficult to manage and importantly it has implications for quality of life, health outcomes and survival.
Little is known about how clinical teams in hospitals respond when they believe a person with dementia is refusing care. There may be potential for educational interventions that change patient experience, with associated improvement in treatment and care outcomes. In response, we will use an in-depth ethnographic approach to provide a detailed understanding of organisational culture, and how hospital organisation and clinical teams respond to refusal of care in people with dementia.
Ethnography is particularly useful to examine healthcare where measurement is inappropriate, and where the topic is complex and highly sensitive. Fieldwork (within 5 hospitals from across the UK) will involve the researcher being immersed in the hospital setting and the wards to examine everyday clinical processes, ward rounds, consultations, case reviews and clinical meetings. This will allow us to observe a wide range of refusal of care events for this patient group across the settings, the clinical and hospital responses to them and how hospital processes, procedures and responses impact on the patient experience of refusal of care.
REC name
Wales REC 3
REC reference
15/WA/0041
Date of REC Opinion
17 Feb 2015
REC opinion
Unfavourable Opinion