An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease.
Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.
Hasson
Felicity
F
Institute of Nursing Research and School of Nursing, University of Ulster, Newtownabbey, UK. f.hasson@ulster.ac.uk
Kernohan
W George
WG
McLaughlin
Marian
M
Waldron
Mary
M
McLaughlin
Dorry
D
Chambers
Helen
H
Cochrane
Barbara
B
D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D006297:Health Services Accessibility / Q000458:organization & administration* / Q000592:standards; D006699:Home Care Services / Q000458:organization & administration* / Q000592:standards; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000458:organization & administration* / Q000523:psychology / Q000592:standards; D010300:Parkinson Disease / Q000628:therapy*; D013727:Terminal Care / Q000458:organization & administration* / Q000523:psychology / Q000592:standards