Psychological support in district nurse provision of palliative care
Research type
Research Study
Full title
What constitutes psychological support in district nurse provision of palliative care for patients and families?
IRAS ID
293520
Contact name
Anne Butterworth
Contact email
Sponsor organisation
The Open University
Duration of Study in the UK
2 years, 11 months, 20 days
Research summary
District nurses are given the remit in national policy to provide home-based palliative care. This includes physical, social and psychological needs of patients with life-limiting illness, and their families. Yet there is little evidence about how district nurses provide psychological support. Similarly, almost nothing is known about patient views of such support. Care at home is less visible and hence poorly understood. It takes place in the privacy of people's homes, therefore is rarely witnessed by those not directly involved. Observational research studies are rare.
This study aims to improve understanding of district nurse provision of psychological support in palliative care. It involves an inclusive ethnographic approach, with recorded observations of district nurse visits. District nurses, patients and family (total sample ≈ 25) will have opportunities to become involved at whatever level they feel comfortable. This includes options to act as co-researchers, and to select from a range of flexible data collection methods. As co-researchers, they can analyse their own observational data (via reflective diaries or interviews).
Participation requires informed consent from all members of the patient-family-nurse group to record a home visit. District nurses will act as co-researcher to make the audio/video recordings on a provided device. Recorded clips will be selected by the lead researcher, and co-researchers can choose to review these (or not). They can then reflect on what elements of support might have occurred and what support means to them.
Ethnography offers opportunities to observe and understand care in context. It focuses on taken-for-granted aspects that are hard to measure and difficult to explain. It also allows for sensitivity and flexibility according to participant needs – seen as particularly important in palliative care research and highly valued by patients and family carers.
Understanding the practice and value of psychological support can help provide guidance for future services.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
21/LO/0735
Date of REC Opinion
8 Dec 2021
REC opinion
Further Information Favourable Opinion