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 journalArticle

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.
LanguageEnglish
Pages48-58
JournalInternational Journal of Therapy and Rehabilitation Copyright IJTR
Volume18
Issue number1
Publication statusPublished - Jan 2011

Fingerprint

Allied Health Personnel
Palliative Care
Parkinson Disease
Rehabilitation
Referral and Consultation
Focus Groups
Uncertainty
Interviews
Health

Keywords

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

Cite this

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title = "Allied Health Professionals ' Views on Palliative Care for People with Advanced Parkinson's Disease",
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.",
keywords = "allied health professionals, barriers, palliative care, Parkinson's disease, Qualitative Interviews",
author = "Mary Waldron and Kernohan, {W George} and Felicity Hasson and Susan Foster and Barbara Cochrane and Cathy Payne",
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",
year = "2011",
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Allied Health Professionals ' Views on Palliative Care for People with Advanced Parkinson's Disease. / Waldron, Mary; Kernohan, W George; Hasson, Felicity; Foster, Susan; Cochrane, Barbara; Payne, Cathy.

In: International Journal of Therapy and Rehabilitation Copyright IJTR, Vol. 18, No. 1, 01.2011, p. 48-58.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Allied Health Professionals ' Views on Palliative Care for People with Advanced Parkinson's Disease

AU - Waldron, Mary

AU - Kernohan, W George

AU - Hasson, Felicity

AU - Foster, Susan

AU - Cochrane, Barbara

AU - Payne, Cathy

N1 - 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

PY - 2011/1

Y1 - 2011/1

N2 - 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.

AB - 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.

KW - allied health professionals

KW - barriers

KW - palliative care

KW - Parkinson's disease

KW - Qualitative Interviews

M3 - Article

VL - 18

SP - 48

EP - 58

JO - International Journal of Therapy and Rehabilitation

T2 - International Journal of Therapy and Rehabilitation

JF - International Journal of Therapy and Rehabilitation

SN - 1741-1645

IS - 1

ER -