Allied Health Professionals ' Views on Palliative Care for People with Advanced Parkinson's Disease

Mary Waldron, W George Kernohan, Felicity Hasson, Susan Foster, Barbara Cochrane, Cathy Payne

Research output: Contribution to journalArticlepeer-review

19 Citations (Scopus)
281 Downloads (Pure)

Abstract

Aims: Allied health professionals (AHPs) have a key role in the delivery of palliative care through rehabilitation. However, evidence suggests that rehabilitation remains an area of neglect in palliative care. This study explores the views of allied health professionals in delivering rehabilitation in palliative care to people with Parkinson’s disease. Methods: Twelve allied health professionals, from both generalist and specialist settings, who had experience of working with people with advanced Parkinson’s disease and/or palliative care took part in interviews and/or focus groups.Findings: Participants viewed palliative care as holistic care; however the rehabilitation care, they provided was impeded by a number of personal, organisational and negative perceptions. Misconceptions as to the value of rehabilitation in the palliative stage and a lack of training resulted in uncertainty as to when and how it could be introduced. While the importance of early referral to AHP rehabilitation services was highlighted, organisational and administrative barriers prevented many people from accessing such care. Conclusion: Many health professionals have a role in palliative care; however, barriers prevent early referral and ongoing access to such services. There is a need to educate professionals in the principles of palliative rehabilitation, combined with targeted resources to promote shared care and responsibility.
Original languageEnglish
Pages (from-to)48-58
JournalInternational Journal of Therapy and Rehabilitation Copyright IJTR
Volume18
Issue number1
Publication statusPublished - Jan 2011

Bibliographical note

Copyright IJTR
Reproduced with kind permission from the International Journal of Therapy and Rehabilation.
Reference text: Allied Health Professions Palliative Care Project Team (2004)
Allied health professional services for cancer related palliative
care: an assessment of need. New Opportunities Fund, UK
Borasio GD, Voltz R (2005) Palliative care in neurology. J Palliat
Care 21(3): 188–9
Calgar AT, Gurses HN, Mutluay FK. Kiziltan G (2005)
Effects of home exercises on motor performance
in clients with Parkinson’s Disease. Clin Rehabil
19(8): 870–870
Canadian Association of Occupational Therapists (2001)
Occupational therapy and end-of-life care. Position Statement.
Can J Occup Ther 72(2): 121
Clarkson CJ (2008) The impact of national policy on palliative
care on clients with neurodegenerative disease. British Journal
of Neuroscience Nursing 4(7): 330–4
Cole RP, Scialla SJ, Lucien B (2000) Functional recovery in
cancer rehabilitation. Archives of Physical Medicine and
Rehabilitation 81(5): 623–7
Consumer’s Association (2002) MS, Parkinson’s Disease and
Physiotherapy. Drug Ther Bull 40(5): 38–40
Dean KHO, Ellis-Hill C, Jones D et al (2002) Systematic Review
of Paramedical Therapies for Parkinson’s Disease. Movement
Disorders 17(5): 984–91
Denscombe M (1998) The Good Research Guide for Small Scale
Social Research Projects. Open University Press, Buckingham
Department of Health (2005) The National Service Framework
for Long-term Conditions. DH, London
Department of Health (2007) The Cancer Reform Strategy
2007. Online. http://tinyurl.com/y8smsjy (accessed 9
December 2010)
Department of Health (2008) Modernising Allied Health
Professions Careers: A Competence Based Career
Framework. DH, London
Department of Health (2008) The End of Life Strategy 2008.
Online. http://tinyurl.com/ydtjtxn (accessed 9 December 2010)
Department of Health, Social Services and Public Safety
(DHSSPS) (2010) Living Matters, Dying Matters. A Palliative
and End of Life Care Strategy for Adults in Northern Ireland.
DHSSPS, Belfast
Dharmasena HP, Forbes K (2001) Palliative Care for Patients
with non-malignant disease; will hospital physicians refer?
Palliat Med 15(5): 413–7
Dowell L (2002) Multiprofessional palliative care in a general
hospital: education and training needs. International Journal of
Palliative Nursing 8(6): 294–303
Doyle D, Hanks, G Chenry N, Calman K (eds) (2004). Oxford
Textbook of Palliative Medicine. Oxford University Press,
Oxford
Eckman S, Roe J (2005) Speech and language therapists in palliative
care: what do we have to offer? International Journal of
Palliative Nursing 11(4): 179–81
Frost M (2001) The role of physical, occupational, and speech
therapy in hospice: patient empowerment. Am J Hosp Palliat
Care 18(6): 397–402
Giles S, Miyasaki J (2009) Palliative Stage Parkinson’s disease:
patient and family experiences of health-care services. Palliat
Med 23(2): 120–5
Goy ER, Carter JH, Ganzani L (2008) Needs and experiences of
caregivers for family members dying with Parkinson disease. J
Palliat Care 24(2): 69–75
Hirsch MA, Farley BG (2009) Exercise and Neuroplasticity in
Persons Living with Parkinson’s Disease. Eur J Phys Rehabil
Med 45(2): 215–29
Hopkins KF, Tookman AJ (2000) Rehabilitation and Specialist
Palliative Care. International Journal of Palliative Nursing
6(3): 1234–130
Kale R, Menken M (2004) Who should look after people with
Parkinson’s disease. BMJ 328(7431): 62–3
Kealey P, McIntyre I (2005) An evaluation of the domiciliary
occupational therapy service in palliative cancer care in a community
trust: a patient and carers perspective. Eur J Cancer
Care (Engl) 14(3): 232–43
Keus SHJ, Bloem BR, Hendriks EJM, Bredero-Cohen AB,
Munneke M; Practice Recommendations Development
Group (2007) Evidence-based analysis of physical therapy in
Parkinson’s disease with recommendations for practice and
research. Mov Disord 22(4): 452–60
Keus SHJ, Bloem BR, Verbaan D et al (2004) Physiotherapy
in Parkinson’s disease: utilisation and patient satisfaction. J
Neurol 251(6): 680–7
Laakso L (2006) The role of physiotherapy in palliative care. Aust
Fam Physcician 35(10): 781
Lanoix M (2009)Palliative care and Parkinson’s disease: managing
the chronic-palliative interface. Chronic Illn 5(1): 46–55
Matcant D, Rapin CH (1993) Role of the physiotherapist in palliative
care, J Pain Symptom Manag 8(2): 68–71
Mays N, Pope C (1995) Rigour and qualitative research. BMJ
311(6997): 109–12
McClain CS, Rosenfeld B, Breitbart W (2003) Effect of spiritual
well-being on end-of-life despair in terminally-ill cancer
patients. Lancet 361(9369): 1603–07Michel TH (2001) Do physiotherapist have a role in palliative
care? Physiother Res Int 6(1): v-vi
Miles MB, Huberman AM (1994) Qualitative Data Analysis:
An Expanded Sourcebook. (2nd Edn). Sage, Thousand Oaks,
California
Montgomery EB Jr (2004) Rehabilitative Approaches to Parkinson’s
Disease. Parkinsonism Relat Disord 10(Suppl 1): S43–7
National Council for Hospice and Specialist Palliative Care
(2000) Fulfilling Lives. Rehabilitation in palliative care.
NCPC, London
National Institute for Clinical Excellence (NICE) (2004)
Guidance on Cancer Services: Improving supportive and palliative
care for adults with cancer, the manual. NICE, London
National Institute for Clinical Excellence (2006) Parkinson’s disease:
Diagnosis and management in primary and secondary
care. NICE, London
Nelson L, Hasson F, Kernohan G (2010) An exploratory study
of the beliefs of district nurses regarding referral of a patient
receiving palliative care for physiotherapy. Unpublished
Report, University of Ulster
Nijkrake MJ, Keus SHJ, Kalf JG et al (2007) Allied health care
interventions and complementary therapies in Parkinson’s disease.
Parkinsonism Relat Disord 13 (Suppl 1): S488–94
Nijkrake MJ, Keus SHJ, Oostendorp RAB et al (2008) Allied
health care in Parkinson’s disease: referral, consultation and
professional expertise. Mov Disord 24(2): 282–6
Northern Ireland Cancer Network (2008) Supportive and
Palliative Care Network Multi-disciplinary Education Work
Strand, A Famework for Generalist and Specialist Palliative
and End of Life Care Competency. NICaN, Belfast
Olson E, Christian A (2005) The role of rehabilitation medicine
and palliative care in the treatment of patients with end-stage
disease. Phys Med Rehabil Clin N Am 16(1):285-305, xi
Parkinson’s Disease Society (PDS) (1994) Meeting a Need.
Discussion Document. PDS, UK
Royal College of Physicians, National Council for Palliative
Care, British Society of Rehabilitation Medicine (2008) Long
term neurological conditions: management at the interface
between neurology, rehabilitation and palliative care. Concise
Guidance to Good Practice series, No 10. Online. http://tinyurl.
com/6rk9th (accessed 9 December 2010)
Santiago-Palma J, Payne R (2001) Palliative Care and
Rehabilitation, Cancer Rehabilitation in the New Millennium.
Cancer 92(Suppl 4): 1049–52
Schleinich MA, Warren S, Nekolajchuk C, Kaasa T, Watanabe S
(2008) Palliative care rehabilitation survey: a pilot study of patients’
priorities for rehabilitation goals. Palliat Med 22(7): 822–30
Taylor K, Currow D (2003) A prospective study of patient
identified unmet activity of daily living needs among cancer
patients at a comprehensive cancer care centre. Australian
Occupational Therapy Journal 50(2): 79–85
Uwimana J, Struthers P (2007) Met and unmet palliative care
needs of people living with HIV/AIDS in Rwanda. SAHARA
J 4(1): 575–85
van der Marck MA, Kalf JG, Sturkenboom IHWM, Nijkrake MJ,
Mummeke M (2009) Multidisciplinary care for patients with
Parkinson’s disease. Parkinsonism Relat Disord 15(Suppl 3):
S219–223
van Teijlingen E (2003) Review of the Qualitative Researcher’s
Companion. Socialogical Research Online. 8(1)
Ward CD, Phillips M, Smith A and Moran M (2003) Multidisciplinary
approaches in progressive neurological disease: can we do better? J
Neurol Neurosurg Psychiatry 74(Suppl 4): 8–12
Williams S (2009) Opportunities and Challenges: Managing
transitions in late stage Parkinson’s disease. The Centrality
of Bridging and Scaffolding in developing community –
based care and support. Summary. Online. http://tinyurl.
com/2fxhewr (accessed 9 December 2010)
Wressle E, Engstranz C, Granerus A-K (2007) Living with
Parkinson’s Disease: Elderly clients’ and relatives’ perspective
on daily living. Australian Occupational Therapy Journal
54(2): 131–9

Keywords

  • allied health professionals
  • barriers
  • palliative care
  • Parkinson's disease
  • Qualitative Interviews

Fingerprint

Dive into the research topics of 'Allied Health Professionals ' Views on Palliative Care for People with Advanced Parkinson's Disease'. Together they form a unique fingerprint.

Cite this