Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview.
BACKGROUND
Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care.


OBJECTIVE
(1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care.


METHODS
This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.


METHODS
A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland.


RESULTS
People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs.


CONCLUSIONS
A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.
1 Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, Cork, Ireland.
Siobhan
S
Fox
2 Parkinson's Association of Ireland, Dublin, Ireland.
Alison
A
Cashell
3 Institute of Nursing & Health Research, Ulster University, Jordanstown, UK.
W George
WG
Kernohan
4 Irish Hospice Foundation, Dublin, Ireland.
Marie
M
Lynch
1 Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, Cork, Ireland.
Ciara
C
McGlade
5 Marymount University Hospital & Hospice, Cork University Hospital, and University College Cork, Cork, Ireland.
Tony
T
O'Brien
6 Cork University Hospital, Cork, Ireland.
Sean S
SS
O'Sullivan
7 St Finbarr's Hospital, Cork, Ireland.
Mary J
MJ
Foley
1 Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, Cork, Ireland.
Suzanne
S
Timmons
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D007494:Ireland; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D010300:Parkinson Disease / Q000523:psychology* / Q000628:therapy*; D057240:Patient Preference / Q000523:psychology*; D036301:Qualitative Research
Parkinson disease; caregivers; palliative care; qualitative research; quality of life