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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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References

REFERENCES

Bray, J. & Cooper, J. (2004). The contribution of occupational therapy to palliative medicine. In Oxford textbook of palliative medicine, 3rd ed. Doyle, D. et al. (eds.), pp. 1035–1041. Oxford: Oxford University Press.Google Scholar
Brott, T., Hocking, C. & Paddy, A. (2007). Occupational disruption: Living with motor neurone disease. British Journal of Occupational Therapy, 70(1), 24–34.CrossRefGoogle Scholar
Brown, J.B. & Sutton, L. (2009). A neurological care pathway for meeting the palliative care needs of people with life-limiting neurological conditions. International Journal of Palliative Nursing, 15(3), 120–127.CrossRefGoogle ScholarPubMed
Clarkson, C.J. (2008). The impact of national policy on palliative care on patients with neurodegenerative disease. British Journal of Neuroscience Nursing, 4(7), 330–334.CrossRefGoogle Scholar
Creek, J. (2010). The core concepts of occupational therapy: A dynamic framework for practice. London: Jessica Kingsley Publishers.Google Scholar
Creswell, J. (2007). Qualitative inquiry and research design: Choosing among five approaches, 2nd ed. London: Sage Publications.Google Scholar
Department of Health (2005). The National Service framework for long-term (neurological) conditions. London: Department of Health.Google Scholar
Department of Health, Social Services and Public Safety for Northern Ireland (2010). Living mattersdying matters. Belfast: DHSSPSNI.Google Scholar
Elliott, S.J. & Velde, B.P. (2005). Integration of occupation for individuals affected by Parkinson's disease. Physical & Occupational Therapy in Geriatrics, 24(1), 61–79.Google Scholar
Halkett, G.K.B., Ciccarelli, M. & Keesing, S. (2010). Occupational therapy in palliative care: Is it under-utilised in Western Australia? Australian Occupational Therapy Journal, 57, 301–309.Google Scholar
Hasselkus, B.R. (2011). The meaning of everyday occupation, 2nd ed. Thorofare, NJ: Slack.Google Scholar
Hinojosa, J., Kramer, P., Royeen, C.B., et al. (2003). Core concept of occupation. In Perspectives in human occupation: Participation in life. Kramer, P. et al. (eds.), pp. 1–17. Baltimore: Lippencott, Williams and Wilkins.Google Scholar
Hudson, P.L., Toye, C. & Kristijanson, L.J. (2006). Would people with Parkinson's disease benefit from palliative care? Palliative Medicine, 20, 87–94.CrossRefGoogle ScholarPubMed
Jönsson, A.L., Moller, A. & Grimby, G. (1998). Managing occupations in everyday life to achieve adaptation. The American Journal of Occupational Therapy, 53, 353–362.Google Scholar
Keesing, S. & Rosenwax, L. (2011). Is occupation missing from occupational therapy in palliative care? Australian Occupational Therapy Journal, 58, 329–336.CrossRefGoogle ScholarPubMed
Kernohan, G., Waldron, M. & Hardyway, D. (2011). Palliative care in Parkinson's disease. Nursing Times, 107(24), 22–25.Google Scholar
Kuo, A. (2011). A transactional view: Occupation as a means to create experiences that matter. Journal of Occupational Science, 18(2), 131–138.Google Scholar
Lala, A.P. & Kinsella, E.A. (2011). A phenomenological inquiry into the embodied nature of occupation at end of life. Canadian Journal of Occupational Therapy, 78(4), 246–254.CrossRefGoogle ScholarPubMed
Lexell, E.M., Iwarsson, S. & Lund, L. (2011). Occupational adaptation in people with multiple sclerosis. Occupational Therapy Journal of Research, 31(3), 127–133.Google Scholar
Marcil, W. (2006). The hospice nurse and occupational therapist: A marriage of expedience. Home Health Care Management & Practice, 19(1), 26–30.Google Scholar
National Council for Hospice and Specialist Palliative Care Services (2000). Fulfilling lives: Rehabilitation in palliative care. London: NCHSPCS.Google Scholar
National Council for Palliative Care (2006). Fulfilling lives: Briefing update. London: National Council for Palliative Care.Google Scholar
National Council for Palliative Care (NCPC) (2010). End-of-life care in long-term neurological conditions. London: National Council for Palliative Care.Google Scholar
National Institute for Clinical Excellence (NICE) (2006). Parkinson's disease: Diagnosis and management in primary and secondary care. London: NICE.Google Scholar
Newell, R. & Burnard, P. (2011). Research for evidence-based practice in healthcare, 2nd ed. Oxford: Wiley-Blackwell.Google Scholar
Pearson, D. (2010). End-of-life care: Everyone's business. British Journal of Occupational Therapy, 73(10), 291.Google Scholar
Polit, D.F. & Beck, C.T. (2012). Nursing research: Generating and assessing evidence for nursing practice, 9th ed. Philadelphia: Lippincott, Williams and Wilkins.Google Scholar
Pretzer-Aboff, I., Galik, E. & Resnick, B. (2009). Parkinson's disease: Barriers and facilitators to optimising function. Rehabilitation Nursing, 34(2), 55–63.Google Scholar
Reed, K., Hocking, C. & Smythe, L. (2011). Exploring the meaning of occupation: The case for phenomenology. Canadian Journal of Occupational Therapy, 78(5), 303–310.Google Scholar
Schleinich, M.A., Warren, S., Nekolaichuk, C., et al. (2008). Palliative care rehabilitation survey: A pilot study of patients' priorities for rehabilitation goals. Palliative Medicine, 22, 822–830.Google Scholar
Sviden, G.A., Tham, K. & Borell, L. (2010). Involvement in everyday life for people with a life-threatening illness. Palliative & Supportive Care, 8, 345–352.Google Scholar
Tookman, A., Hopkins, K. & Scharpen-von-Heussen, K. (2004). Rehabilitation in palliative medicine. In Oxford textbook of palliative medicine, 3rd ed. Doyle, D. et al. (eds.), pp. 1019–1034.Google Scholar
Waldron, M., Kernohan, W.G., Foster, S., et al. (2011). Allied health professionals' views on palliative care for people with advanced Parkinson's disease. International Journal of Therapy and Rehabilitation, 18(1), 48–57.Google Scholar
Wilcock, A.A. (2005). 2004 CAOT Conference keynote address. Occupational science: Bridging occupation and health. Canadian Journal of Occupational Therapy, 72(1), 5–12.Google Scholar
Wilding, C. (2010). Defining occupational therapy. In Occupational therapy and physical dysfunction: Enabling occupation, 6th ed. Curtin, M. et al. (eds.), pp. 3–16. Edinburgh: Elsevier Churchill Livingstone.Google Scholar
Wilding, C. & Whiteford, G. (2005). Phenomenological research: An exploration of conceptual, theoretical, and practical issues. Occupational Therapy Journal of Research, 25(3), 98–104.Google Scholar
World Federation of Occupational Therapists Council (2010). Statement on occupational therapy. Australia: World Federation of Occupational Therapists. Available from http://www.wfot.org/AboutUs/AboutOccupationalTherapy/WhatisOccupationalTherapy.aspx [accessed 10 February 2012].Google Scholar
World Health Organization (2010). WHO definition of palliative care. Geneva: WHO. Available from http://www.who.int/cancer/palliative/definition/en/ [accessed 20 October 2011].Google Scholar
Wressle, E., Engstrand, C. & Granerus, A.K. (2007). Living with Parkinson's disease: Elderly patients' and relatives' perspective on daily living. Australian Occupational Therapy Journal, 54, 131–139.CrossRefGoogle Scholar