Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson’s disease: a definite role but uncertainty around terminology and timing

Siobhan Fox, Alison Cashell, George Kernohan, Marie Lynch, Ciara McGlade, Tony O’Brien, Sean O’Sullivan, Suzanne Timmons

Research output: Contribution to journalArticle

9 Citations (Scopus)

Abstract

Background: An integrated palliative care approach is recommended in all life-limiting diseases, including Parkinson’s disease (PD). However research shows that people with PD have unmet palliative care needs. The study aimed to explore multidisciplinary healthcare workers’ (HCWs) views on palliative care for people with PD, identifying perceived barriers and facilitators.Methods: A qualitative design was used; data was analysed using Thematic Analysis. Semi-structured interviews were conducted with 30 HCWs, working either with people with PD or in a palliative care setting in Ireland.Results: A number of perceived barriers were evident helping to account for the previously reported unmet palliative care needs in PD. A lack of education about PD and palliative care meant that HCWs were unsure of the appropriateness of referral, and patients and carers weren’t equipped with information to seek palliative care. A lack of communication between PD and palliative care specialists was seen to impede collaboration between the disciplines. Uncertainty about the timing of palliative care meant that it was often not introduced until a crisis point, despite the recognised need for early planning due to increased prevalence of dementia.Conclusions: Most HCWs recognised a need for palliative care for people with PD; however several barriers to implementing a palliative care approach in this population need to be addressed. Implications for clinical practice and policy include the need for an integrated model of care, and education for all HCWs, patients, carers, and the public on both the nature of advanced PD, and the potential of palliative care in support of patients and their family members.
LanguageEnglish
Pages1-9
JournalBMC Palliative Care
Volume15
Issue number15
DOIs
Publication statusPublished - 9 Feb 2016

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Palliative Care
Terminology
Uncertainty
Parkinson Disease
Interviews
Delivery of Health Care
Caregivers
Education
Ireland
Dementia
Referral and Consultation
Communication

Keywords

  • Parkinson disease – Parkinsonism – Palliative care – Interviews – Integrated care model – Qualitative research

Cite this

Fox, Siobhan ; Cashell, Alison ; Kernohan, George ; Lynch, Marie ; McGlade, Ciara ; O’Brien, Tony ; O’Sullivan, Sean ; Timmons, Suzanne. / Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson’s disease: a definite role but uncertainty around terminology and timing. In: BMC Palliative Care. 2016 ; Vol. 15, No. 15. pp. 1-9.
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abstract = "Background: An integrated palliative care approach is recommended in all life-limiting diseases, including Parkinson’s disease (PD). However research shows that people with PD have unmet palliative care needs. The study aimed to explore multidisciplinary healthcare workers’ (HCWs) views on palliative care for people with PD, identifying perceived barriers and facilitators.Methods: A qualitative design was used; data was analysed using Thematic Analysis. Semi-structured interviews were conducted with 30 HCWs, working either with people with PD or in a palliative care setting in Ireland.Results: A number of perceived barriers were evident helping to account for the previously reported unmet palliative care needs in PD. A lack of education about PD and palliative care meant that HCWs were unsure of the appropriateness of referral, and patients and carers weren’t equipped with information to seek palliative care. A lack of communication between PD and palliative care specialists was seen to impede collaboration between the disciplines. Uncertainty about the timing of palliative care meant that it was often not introduced until a crisis point, despite the recognised need for early planning due to increased prevalence of dementia.Conclusions: Most HCWs recognised a need for palliative care for people with PD; however several barriers to implementing a palliative care approach in this population need to be addressed. Implications for clinical practice and policy include the need for an integrated model of care, and education for all HCWs, patients, carers, and the public on both the nature of advanced PD, and the potential of palliative care in support of patients and their family members.",
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author = "Siobhan Fox and Alison Cashell and George Kernohan and Marie Lynch and Ciara McGlade and Tony O’Brien and Sean O’Sullivan and Suzanne Timmons",
note = "Reference text: 1.WHO definition of palliative care. 2015. http://​www.​who.​int/​cancer/​palliative/​definition/​en/​ Accessed on 14 May 2015. 2.Dept of Health and Children: Report of the National Advisory Committee on Palliative Care. Dublin, Ireland: Dept of Health and Children; 2001. 3.Hussain J, Adams D, Campbell C. End-of-life care in neurodegenerative conditions: outcomes of a specialist palliative neurology service. International Journal of Palliative Nursing. 2013;19(4):162–9. 4.Walker RW, Churm D, Dewhurst F, Samuel M, Ramsell A, Lawrie C, et al. Palliative care in people with idiopathic Parkinson's disease who die in hospital. BMJ Supportive and Palliative Care. 2014;4(1):64–7. 5.National End of Life Care Programme (NEoLCP), the National Council for Palliative Care, and the Neurological Alliance: Improving end of life care in neurological disease: A framework for implementation. London, UK: NEoLCP; November 2010. 6.Richfield EW, Jones EJ, Alty JE. Palliative care for Parkinson’s disease: A summary of the evidence and future directions. Palliative Medicine. 2013;27(9):805–10. 7.Hasson F, Kernohan WG, McLaughlin M, Waldron M, McLaughlin D, Chambers H, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliative Medicine. 2010;24(7):731–6. 8.Fox S, Gannon E, Cashell A, Kernohan WG, Lynch M, McGlade C, O'Brien T, O'Sullivan SS, Sweeney C, Timmons S. Survey of Health Care Workers Suggests Unmet Palliative Care Needs in Parkinson's Disease. Movement Disorders Clinical Practice. 2015;2(2):142–48. 9.Giles S, Miyasaki J. Palliative stage Parkinson's disease: patient and family experiences of health-care services. Palliative Medicine. 2009;23(2):120–5.View ArticlePubMed 10.Waldron M, Kernohan WG, Hasson F, Foster S, Cochrane B, Payne C. Allied health professional’s views on palliative care for people with advanced Parkinson's disease. International Journal of Therapy and Rehabilitation. 2011;18(1):48–58.View Article 11.Waldron M, Kernohan WG, Hasson F, Foster S, Cochrane B. What do social workers think about the palliative care needs of people with Parkinson’s disease? British Journal of Social Work. 2013;43(1):81–98. 12.Joint Health Service Executive and Irish Hospice Foundation Report of the Extending Access Study: Palliative Care for All: Integrating Palliative Care into Disease Management Frameworks. Dublin, Ireland: HSE & IHF; 2008. 13.National Clinical Palliative Care Programme [http://​www.​hse.​ie/​eng/​about/​Who/​clinical/​natclinprog/​palliativecarepr​ogramme/​about/​]. Accessed date 05 Feburary 2016. 14.Braun V, Clarke V. Using thematic analysis in psychology. In: Qualitative Research in Psychology. vol. 3. 2006;77-101. 15.Riessman CK. Narrative Analysis. Newbury Park, CA: Sage; 1993. 16.Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007;19(6):349–57. 17.Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology. 2014;83(6):561–7.PubMed Central 18.Lee MA, Prentice WM, Hildreth AJ, Walker RW. Measuring symptom load in Idiopathic Parkinson's disease. Parkinsonism and Related Disorders. 2007;13(5):284–9. 19.Hudson PL, Toye C, Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliative Medicine. 2006;20(2):87–94. 20.Almack K, Cox K, Moghaddam N, Pollock KJS. After you: conversations between patients and healthcare professionals in planning for end of life care. BMC palliative care. 2012;11(15):142–48. 21.Ward C, Phillips M, Smith A, Moran M. Multidisciplinary approaches in progressive neurological disease: can we do better? Journal of Neurology, Neurosurgery, and Psychiatry. 2003;74 Suppl 4:iv8–iv12.PubMed CentralPubMed 22.Seeber AA, Hijdra A, Vermeulen M, Willems DL. Discussions about treatment restrictions in chronic neurologic diseases A structured review. Neurology. 2012;78(8):590–7. 23.Kernohan G, Waldron M, Hardyway D. Palliative care in Parkinson’s disease. Nursing times. 2011;107(24):22–5. 24.Buter TC, van den Hout A, Matthews FE, et al. Dementia and survival in Parkinson’s disease: a 12 year population study. Neurology. 2008;70:1017–22. 25.Aarsland D BK, Tysnes OB, et al. Cognitive impairment in incident, untreated Parkinson’s disease. Neurology. 2009;72(13):1121-1126. 26.Neurological Disorders: Public Health Challenges [http://​www.​who.​int/​mental_​health/​neurology/​neurological_​disorders_​report_​web.​pdf]. Accessed date 05 Feburary 2016. 27.Borasio GD. The role of palliative care in patients with neurological diseases. Nature reviews Neurology. 2013;9(5):292–5.",
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Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson’s disease: a definite role but uncertainty around terminology and timing. / Fox, Siobhan; Cashell, Alison; Kernohan, George; Lynch, Marie; McGlade, Ciara; O’Brien, Tony; O’Sullivan, Sean; Timmons, Suzanne.

In: BMC Palliative Care, Vol. 15, No. 15, 09.02.2016, p. 1-9.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson’s disease: a definite role but uncertainty around terminology and timing

AU - Fox, Siobhan

AU - Cashell, Alison

AU - Kernohan, George

AU - Lynch, Marie

AU - McGlade, Ciara

AU - O’Brien, Tony

AU - O’Sullivan, Sean

AU - Timmons, Suzanne

N1 - Reference text: 1.WHO definition of palliative care. 2015. http://​www.​who.​int/​cancer/​palliative/​definition/​en/​ Accessed on 14 May 2015. 2.Dept of Health and Children: Report of the National Advisory Committee on Palliative Care. Dublin, Ireland: Dept of Health and Children; 2001. 3.Hussain J, Adams D, Campbell C. End-of-life care in neurodegenerative conditions: outcomes of a specialist palliative neurology service. International Journal of Palliative Nursing. 2013;19(4):162–9. 4.Walker RW, Churm D, Dewhurst F, Samuel M, Ramsell A, Lawrie C, et al. Palliative care in people with idiopathic Parkinson's disease who die in hospital. BMJ Supportive and Palliative Care. 2014;4(1):64–7. 5.National End of Life Care Programme (NEoLCP), the National Council for Palliative Care, and the Neurological Alliance: Improving end of life care in neurological disease: A framework for implementation. London, UK: NEoLCP; November 2010. 6.Richfield EW, Jones EJ, Alty JE. Palliative care for Parkinson’s disease: A summary of the evidence and future directions. Palliative Medicine. 2013;27(9):805–10. 7.Hasson F, Kernohan WG, McLaughlin M, Waldron M, McLaughlin D, Chambers H, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliative Medicine. 2010;24(7):731–6. 8.Fox S, Gannon E, Cashell A, Kernohan WG, Lynch M, McGlade C, O'Brien T, O'Sullivan SS, Sweeney C, Timmons S. Survey of Health Care Workers Suggests Unmet Palliative Care Needs in Parkinson's Disease. Movement Disorders Clinical Practice. 2015;2(2):142–48. 9.Giles S, Miyasaki J. Palliative stage Parkinson's disease: patient and family experiences of health-care services. Palliative Medicine. 2009;23(2):120–5.View ArticlePubMed 10.Waldron M, Kernohan WG, Hasson F, Foster S, Cochrane B, Payne C. Allied health professional’s views on palliative care for people with advanced Parkinson's disease. International Journal of Therapy and Rehabilitation. 2011;18(1):48–58.View Article 11.Waldron M, Kernohan WG, Hasson F, Foster S, Cochrane B. What do social workers think about the palliative care needs of people with Parkinson’s disease? British Journal of Social Work. 2013;43(1):81–98. 12.Joint Health Service Executive and Irish Hospice Foundation Report of the Extending Access Study: Palliative Care for All: Integrating Palliative Care into Disease Management Frameworks. Dublin, Ireland: HSE & IHF; 2008. 13.National Clinical Palliative Care Programme [http://​www.​hse.​ie/​eng/​about/​Who/​clinical/​natclinprog/​palliativecarepr​ogramme/​about/​]. Accessed date 05 Feburary 2016. 14.Braun V, Clarke V. Using thematic analysis in psychology. In: Qualitative Research in Psychology. vol. 3. 2006;77-101. 15.Riessman CK. Narrative Analysis. Newbury Park, CA: Sage; 1993. 16.Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007;19(6):349–57. 17.Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology. 2014;83(6):561–7.PubMed Central 18.Lee MA, Prentice WM, Hildreth AJ, Walker RW. Measuring symptom load in Idiopathic Parkinson's disease. Parkinsonism and Related Disorders. 2007;13(5):284–9. 19.Hudson PL, Toye C, Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliative Medicine. 2006;20(2):87–94. 20.Almack K, Cox K, Moghaddam N, Pollock KJS. After you: conversations between patients and healthcare professionals in planning for end of life care. BMC palliative care. 2012;11(15):142–48. 21.Ward C, Phillips M, Smith A, Moran M. Multidisciplinary approaches in progressive neurological disease: can we do better? Journal of Neurology, Neurosurgery, and Psychiatry. 2003;74 Suppl 4:iv8–iv12.PubMed CentralPubMed 22.Seeber AA, Hijdra A, Vermeulen M, Willems DL. Discussions about treatment restrictions in chronic neurologic diseases A structured review. Neurology. 2012;78(8):590–7. 23.Kernohan G, Waldron M, Hardyway D. Palliative care in Parkinson’s disease. Nursing times. 2011;107(24):22–5. 24.Buter TC, van den Hout A, Matthews FE, et al. Dementia and survival in Parkinson’s disease: a 12 year population study. Neurology. 2008;70:1017–22. 25.Aarsland D BK, Tysnes OB, et al. Cognitive impairment in incident, untreated Parkinson’s disease. Neurology. 2009;72(13):1121-1126. 26.Neurological Disorders: Public Health Challenges [http://​www.​who.​int/​mental_​health/​neurology/​neurological_​disorders_​report_​web.​pdf]. Accessed date 05 Feburary 2016. 27.Borasio GD. The role of palliative care in patients with neurological diseases. Nature reviews Neurology. 2013;9(5):292–5.

PY - 2016/2/9

Y1 - 2016/2/9

N2 - Background: An integrated palliative care approach is recommended in all life-limiting diseases, including Parkinson’s disease (PD). However research shows that people with PD have unmet palliative care needs. The study aimed to explore multidisciplinary healthcare workers’ (HCWs) views on palliative care for people with PD, identifying perceived barriers and facilitators.Methods: A qualitative design was used; data was analysed using Thematic Analysis. Semi-structured interviews were conducted with 30 HCWs, working either with people with PD or in a palliative care setting in Ireland.Results: A number of perceived barriers were evident helping to account for the previously reported unmet palliative care needs in PD. A lack of education about PD and palliative care meant that HCWs were unsure of the appropriateness of referral, and patients and carers weren’t equipped with information to seek palliative care. A lack of communication between PD and palliative care specialists was seen to impede collaboration between the disciplines. Uncertainty about the timing of palliative care meant that it was often not introduced until a crisis point, despite the recognised need for early planning due to increased prevalence of dementia.Conclusions: Most HCWs recognised a need for palliative care for people with PD; however several barriers to implementing a palliative care approach in this population need to be addressed. Implications for clinical practice and policy include the need for an integrated model of care, and education for all HCWs, patients, carers, and the public on both the nature of advanced PD, and the potential of palliative care in support of patients and their family members.

AB - Background: An integrated palliative care approach is recommended in all life-limiting diseases, including Parkinson’s disease (PD). However research shows that people with PD have unmet palliative care needs. The study aimed to explore multidisciplinary healthcare workers’ (HCWs) views on palliative care for people with PD, identifying perceived barriers and facilitators.Methods: A qualitative design was used; data was analysed using Thematic Analysis. Semi-structured interviews were conducted with 30 HCWs, working either with people with PD or in a palliative care setting in Ireland.Results: A number of perceived barriers were evident helping to account for the previously reported unmet palliative care needs in PD. A lack of education about PD and palliative care meant that HCWs were unsure of the appropriateness of referral, and patients and carers weren’t equipped with information to seek palliative care. A lack of communication between PD and palliative care specialists was seen to impede collaboration between the disciplines. Uncertainty about the timing of palliative care meant that it was often not introduced until a crisis point, despite the recognised need for early planning due to increased prevalence of dementia.Conclusions: Most HCWs recognised a need for palliative care for people with PD; however several barriers to implementing a palliative care approach in this population need to be addressed. Implications for clinical practice and policy include the need for an integrated model of care, and education for all HCWs, patients, carers, and the public on both the nature of advanced PD, and the potential of palliative care in support of patients and their family members.

KW - Parkinson disease – Parkinsonism – Palliative care – Interviews – Integrated care model – Qualitative research

U2 - 10.1186/s12904-016-0087-6

DO - 10.1186/s12904-016-0087-6

M3 - Article

VL - 15

SP - 1

EP - 9

JO - BMC Palliative Care

T2 - BMC Palliative Care

JF - BMC Palliative Care

SN - 1472-684X

IS - 15

ER -