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“Running Water Won't Freeze”: How people with advanced Parkinson's disease experience occupation

Published online by Cambridge University Press:  29 December 2014

Carolyn Murdock ,
Wendy Cousins  and
W. George Kernohan
Carolyn Murdock
Affiliation:
University of Ulster, Institute of Nursing and Health Research, Jordanstown, Northern Ireland, United Kingdom
Wendy Cousins
Affiliation:
University of Ulster, Institute of Nursing and Health Research, Jordanstown, Northern Ireland, United Kingdom
W. George Kernohan*
Affiliation:
University of Ulster, Institute of Nursing and Health Research, Jordanstown, Northern Ireland, United Kingdom
*
Address correspondence reprint requests to: George Kernohan, University of Ulster, Room 12L21, Shore Road Newtownabbey, Jordanstown BT37 OBQ, Northern Ireland, United Kingdom. E-Mail: [email protected]
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Abstract

Objective:

Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care.

Method:

Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK.

Results:

The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss.

Significance of Results:

Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.

Keywords

Parkinson's diseasePalliative careOccupationPhenomenology
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 5 , October 2015 , pp. 1363 - 1372
Copyright
Copyright © Cambridge University Press 2014 

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