1.9.3 Palliative care in Parkinson's Disease: Informal carers' needs (113)

George Kernohan, Professor of Health Research, School of Nursing. Faculty of Life & Health Science, University of Ulster, Jordanstown, Northern Ireland, United Kingdom Co authors: Felicity Hasson, Marian McLaughlin, Dorry McLaughlin, Barbara Cochrane and Helen Chambers wg.kernohan@ulster.ac.uk

Abstract:

Background:

Traditionally palliative care is associated with end-of-life and cancer; however the concept has extended to other non-cancer populations such as Parkinson’s. Whilst the philosophy of palliative care recognises both the patient and his or her family, less attention has been focused on the informal carer’s palliative care needs regarding Parkinson’s.

Aim:

The aim of this research was to explore the palliative care needs and gaps in palliative care service provision for informal carers caring for people with end-stage Parkinson’s disease.

Methods:

One-to-one semi-structured qualitative interviews were undertaken with a purposive sample of 24 active informal carers in their own homes. All interviews were transcribed verbatim and subject to content analysis.

Results:

There was considerable unmet palliative care need amongst informal carers of people with Parkinson’s. The most prevalent themes to emerge were carers’ need for help with symptom control, for psychological and social support, for respite care, for future planning, and for preparation for end-of-life care. Participants also reported life restrictions and emotional distress. For most, the thought of the future was frightening and the individual nature of Parkinson’s and the uncertainty surrounding its rate of progression made the thought of the future all the more difficult and anxiety-provoking.

Discussion:

This research confirms other studies’ findings of the considerable strain faced by informal carers of people with Parkinson’s disease. This research supports the call for palliative care services to address the needs of informal carers.

Biography:

George Kernohan is active in health research with interests in palliative care, health technology assessment, evaluation of innovation in health, health informatics & computing. He chairs the research group at Northern Ireland Hospice Care. He works on user involvement with the Northern Health and Social Services Council. He teaches evidence-based practice and advanced health research at postgraduate level. He holds a combined science degree and a doctorate in orthopaedic research. He has previously worked with the (NHS) Research & Development Office for Northern Ireland. He is currently Professor of Health Research with University of Ulster.