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BMJ Support Palliat Care. 2018 Jun;8(2):180-183. doi: 10.1136/bmjspcare-2017-001423. Epub 2018 Jan 9.

Impact of specialist palliative care on coping with Parkinson's disease: patients and carers.

Author information

1
Department of Psychological Health and Wellbeing, University of Hull, Hull, UK.
2
Saint Catherine's Hospice, Scarborough, UK.
3
Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.

Abstract

OBJECTIVES:

UK guidelines recommend palliative care access for people with Parkinson's disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients' and carers' coping with Parkinson's disease.

METHODS:

Semistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson's disease (n=3), and carers of people with Parkinson's disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson's disease service in North East England.

RESULTS:

Access to specialist palliative care helped participants cope with some aspects of advanced Parkinson's disease. Three superordinate themes were developed:' managing uncertainty', 'impacts on the self' and 'specialist palliative care maintaining a positive outlook'.

CONCLUSIONS:

Specialist palliative care helped patients and carers cope with advanced Parkinson's disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson's disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson's disease.

KEYWORDS:

coping; palliative care; parkinson’s disease

PMID:
29321159
DOI:
10.1136/bmjspcare-2017-001423
[Indexed for MEDLINE]

Conflict of interest statement

Competing interests: D.A. is a paid employee of the recruitment site providing direct clinical support to the population from which participants were recruited. The remaining authors declare that there is no conflict of interest.

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