An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease

Felicity Hasson, George Kernohan, Marian McLaughlin, Mary Waldron, Dorry McLaughlin, Helen Chambers, Barbara Cochrane

Research output: Contribution to journalArticle

53 Citations (Scopus)

Abstract

Although most people with Parkinson’s disease are cared for in the community, little is known about family members’lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers’ lived experiences ofpalliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson’s disease wereinterviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had notbeen fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring forsomeone with Parkinson’s disease not accessing specialist palliative care services. Participants also reflected upon thephysical and psychological impact of caring in the advanced stage of Parkinson’s. A multi-disciplinary team-based approachwas advocated by participants. These findings provide important insights into the experience of caregiving to patientswith Parkinson’s disease in the home at the end-of-life stage. According to palliative care standards, patients and theircarers are the unit of care; in reality, however, this standard is not being met.
LanguageEnglish
Pages731-736
JournalPalliative Medicine
Volume24
Issue number7
DOIs
Publication statusPublished - 4 Jun 2010

Fingerprint

Caregivers
Terminal Care
Parkinson Disease
Palliative Care
Standard of Care
Communication
Psychology

Keywords

  • Former carers
  • interviews
  • lived experience
  • palliative care
  • Parkinson’s disease

Cite this

@article{43109eb0b90349539b31d53d95640227,
title = "An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease",
abstract = "Although most people with Parkinson’s disease are cared for in the community, little is known about family members’lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers’ lived experiences ofpalliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson’s disease wereinterviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had notbeen fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring forsomeone with Parkinson’s disease not accessing specialist palliative care services. Participants also reflected upon thephysical and psychological impact of caring in the advanced stage of Parkinson’s. A multi-disciplinary team-based approachwas advocated by participants. These findings provide important insights into the experience of caregiving to patientswith Parkinson’s disease in the home at the end-of-life stage. According to palliative care standards, patients and theircarers are the unit of care; in reality, however, this standard is not being met.",
keywords = "Former carers, interviews, lived experience, palliative care, Parkinson’s disease",
author = "Felicity Hasson and George Kernohan and Marian McLaughlin and Mary Waldron and Dorry McLaughlin and Helen Chambers and Barbara Cochrane",
note = "Reference text: 1. Koller W, Paulson G. Therapy of Parkinson’s disease. New York: Marcel Dekker, 1990. 2. National Collaborating Centre for Chronic Conditions. Parkinson’s Disease National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care. London: NCCCC, 2006. 3. Kristjanson LJ, Anoun SM and Oldham L. Palliative care and support for people with neurodegenerative conditions and their carers. Int J Palliat Nurs 2005; 12: 369. 4. Goy ER, Carter JH and Ganzini L. Parkinson’s disease at end of life: caregiver perspectives. Neurology 2007; 69: 611. 5. Goy ER, Carter J and Ganzini L. Needs and experiences of caregivers for family members dying with Parkinson disease. J Palliat Care 2008; 24: 69–75. 6. Whetten-Goldstein K, Cutson T, Zhu C and Schenkman M. Financial burden of chronic neurological disorders to patients and their families: what providers need to know. Journal of Neurologic Physical Therapy 2000; 24: 140–144. 7. Stroebe M, Schut H and Stroebe W. Health outcomes of bereavement. Lancet 2007; 370: 1960–1973. 8. Wressle E, Engstrand C and Granerus AK. Living with Parkinson’s disease: elderly patients’ and relatives’ perspective on daily living. Aust Occup Ther J 2007; 54: 131–139. 9. Lokk J. Reduce life-space of non-professional caregivers to Parkinson’s disease patients with increased disease duration. Clin Neurol Neurosurg 2009; 11: 583–587. 10. Parkinson’ Disease Society. Life with Parkinson’s today – room for improvement. The UK’s largest every survey of people with Parkinson’s and carers: Northern Ireland. London: Parkinson’s Disease Society, 2008. 11. Thomas S and MacMahon D. Parkinson’s disease, palliative care and older people. Nurs Older People 2004; 16: 22–27. 12. Koop P and Strang V. The bereavement experience following home-based family caregiving for persons with advanced cancer. Clin Nurs Res 2003; 12: 127–144. 13. Schulz R, Mendelsohn A, Haley WE, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med 2003; 349: 1936–1942. 14. Hasson F, Spence A, Waldron M, et al. Experiences and needs of bereaved carers during palliative and end-of-life care for people with COPD. J Palliat Care 2009; 25: 157–163. 15. Grande G, Stajduhar K, Aoun S, et al. Supporting lay carers in the end of life care: current gaps and future priorities. Palliat Med 2009; 23: 339–344. 16. Department of Health. The National Service Framework for Long-term Conditions. London: The Stationery Office, 2005. 17. Rudkins H and Aird T. The importance of early consideration of palliative care in Parkinson’s disease. Br J Neurosci Nurs 2006; 2: 10–16. 18. Hudson P, Toye C and Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med 2006; 20: 87–94. 19. Audit Scotland. Review of palliative care services in Scotland. Edinburgh: Audit Scotland, 2008. 20. National Council for Palliative Care. Focus on policy: branching out-new directions. London: NCPC, 2005. 21. Healthy Alliance (2005) Parkinson’s Disease Teaching Pack. In Rudkins, H. & Aird, T. The importance of early consideration of palliative care in Parkinson’s Disease. British Journal of Neuroscience Nursing 2006; 2: 10–16. 22. Parkinson’s Disease Society. Just invisible: a summary. London: Parkinson’s Disease Society, 2005. 23. All Party Parliamentary Group for Parkinson’s Disease. Please mind the gap: Parkinson’s disease services today. Inquiry into access to health and social care services for people with Parkinson’s disease and their carers. London: All Party Parliamentary Group for Parkinson’s Disease, 2009. 24. Gomes B and Higgingson I. Factors influencing death at home in terminally ill patients with cancer: systematic review. Br Med J 2006; 332: 515–521. 25. Grande GE and Ewing G. Death at home unlikely if informal carers prefer otherwise: implications for policy. Palliat Med 2008; 22: 971–972. 26. Giles S and Miyasak J. Palliative stage Parkinson’s disease: patient and family experiences of health-care services. Palliat Med 2009; 23: 120–125. 27. Bunting-Perry LK. Palliative care in Parkinson’s disease: implications for neuroscience nursing. J Neurosci Nurs 2006; 32: 106–113. 28. Jackson L. Society social care: life and death support: post-bereavement help for former Parkinson’s carers. The Guardian 2003; April: 127. 29. Miles MB, Huberman AM. Qualitative data analysis. Newbury Park: Sage Publications, 1994.",
year = "2010",
month = "6",
day = "4",
doi = "10.1177/0269216310371414",
language = "English",
volume = "24",
pages = "731--736",
journal = "Palliative Medicine",
issn = "0269-2163",
number = "7",

}

An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. / Hasson, Felicity; Kernohan, George; McLaughlin, Marian; Waldron, Mary; McLaughlin, Dorry; Chambers, Helen; Cochrane, Barbara.

In: Palliative Medicine, Vol. 24, No. 7, 04.06.2010, p. 731-736.

Research output: Contribution to journalArticle

TY - JOUR

T1 - An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease

AU - Hasson, Felicity

AU - Kernohan, George

AU - McLaughlin, Marian

AU - Waldron, Mary

AU - McLaughlin, Dorry

AU - Chambers, Helen

AU - Cochrane, Barbara

N1 - Reference text: 1. Koller W, Paulson G. Therapy of Parkinson’s disease. New York: Marcel Dekker, 1990. 2. National Collaborating Centre for Chronic Conditions. Parkinson’s Disease National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care. London: NCCCC, 2006. 3. Kristjanson LJ, Anoun SM and Oldham L. Palliative care and support for people with neurodegenerative conditions and their carers. Int J Palliat Nurs 2005; 12: 369. 4. Goy ER, Carter JH and Ganzini L. Parkinson’s disease at end of life: caregiver perspectives. Neurology 2007; 69: 611. 5. Goy ER, Carter J and Ganzini L. Needs and experiences of caregivers for family members dying with Parkinson disease. J Palliat Care 2008; 24: 69–75. 6. Whetten-Goldstein K, Cutson T, Zhu C and Schenkman M. Financial burden of chronic neurological disorders to patients and their families: what providers need to know. Journal of Neurologic Physical Therapy 2000; 24: 140–144. 7. Stroebe M, Schut H and Stroebe W. Health outcomes of bereavement. Lancet 2007; 370: 1960–1973. 8. Wressle E, Engstrand C and Granerus AK. Living with Parkinson’s disease: elderly patients’ and relatives’ perspective on daily living. Aust Occup Ther J 2007; 54: 131–139. 9. Lokk J. Reduce life-space of non-professional caregivers to Parkinson’s disease patients with increased disease duration. Clin Neurol Neurosurg 2009; 11: 583–587. 10. Parkinson’ Disease Society. Life with Parkinson’s today – room for improvement. The UK’s largest every survey of people with Parkinson’s and carers: Northern Ireland. London: Parkinson’s Disease Society, 2008. 11. Thomas S and MacMahon D. Parkinson’s disease, palliative care and older people. Nurs Older People 2004; 16: 22–27. 12. Koop P and Strang V. The bereavement experience following home-based family caregiving for persons with advanced cancer. Clin Nurs Res 2003; 12: 127–144. 13. Schulz R, Mendelsohn A, Haley WE, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med 2003; 349: 1936–1942. 14. Hasson F, Spence A, Waldron M, et al. Experiences and needs of bereaved carers during palliative and end-of-life care for people with COPD. J Palliat Care 2009; 25: 157–163. 15. Grande G, Stajduhar K, Aoun S, et al. Supporting lay carers in the end of life care: current gaps and future priorities. Palliat Med 2009; 23: 339–344. 16. Department of Health. The National Service Framework for Long-term Conditions. London: The Stationery Office, 2005. 17. Rudkins H and Aird T. The importance of early consideration of palliative care in Parkinson’s disease. Br J Neurosci Nurs 2006; 2: 10–16. 18. Hudson P, Toye C and Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med 2006; 20: 87–94. 19. Audit Scotland. Review of palliative care services in Scotland. Edinburgh: Audit Scotland, 2008. 20. National Council for Palliative Care. Focus on policy: branching out-new directions. London: NCPC, 2005. 21. Healthy Alliance (2005) Parkinson’s Disease Teaching Pack. In Rudkins, H. & Aird, T. The importance of early consideration of palliative care in Parkinson’s Disease. British Journal of Neuroscience Nursing 2006; 2: 10–16. 22. Parkinson’s Disease Society. Just invisible: a summary. London: Parkinson’s Disease Society, 2005. 23. All Party Parliamentary Group for Parkinson’s Disease. Please mind the gap: Parkinson’s disease services today. Inquiry into access to health and social care services for people with Parkinson’s disease and their carers. London: All Party Parliamentary Group for Parkinson’s Disease, 2009. 24. Gomes B and Higgingson I. Factors influencing death at home in terminally ill patients with cancer: systematic review. Br Med J 2006; 332: 515–521. 25. Grande GE and Ewing G. Death at home unlikely if informal carers prefer otherwise: implications for policy. Palliat Med 2008; 22: 971–972. 26. Giles S and Miyasak J. Palliative stage Parkinson’s disease: patient and family experiences of health-care services. Palliat Med 2009; 23: 120–125. 27. Bunting-Perry LK. Palliative care in Parkinson’s disease: implications for neuroscience nursing. J Neurosci Nurs 2006; 32: 106–113. 28. Jackson L. Society social care: life and death support: post-bereavement help for former Parkinson’s carers. The Guardian 2003; April: 127. 29. Miles MB, Huberman AM. Qualitative data analysis. Newbury Park: Sage Publications, 1994.

PY - 2010/6/4

Y1 - 2010/6/4

N2 - Although most people with Parkinson’s disease are cared for in the community, little is known about family members’lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers’ lived experiences ofpalliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson’s disease wereinterviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had notbeen fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring forsomeone with Parkinson’s disease not accessing specialist palliative care services. Participants also reflected upon thephysical and psychological impact of caring in the advanced stage of Parkinson’s. A multi-disciplinary team-based approachwas advocated by participants. These findings provide important insights into the experience of caregiving to patientswith Parkinson’s disease in the home at the end-of-life stage. According to palliative care standards, patients and theircarers are the unit of care; in reality, however, this standard is not being met.

AB - Although most people with Parkinson’s disease are cared for in the community, little is known about family members’lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers’ lived experiences ofpalliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson’s disease wereinterviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had notbeen fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring forsomeone with Parkinson’s disease not accessing specialist palliative care services. Participants also reflected upon thephysical and psychological impact of caring in the advanced stage of Parkinson’s. A multi-disciplinary team-based approachwas advocated by participants. These findings provide important insights into the experience of caregiving to patientswith Parkinson’s disease in the home at the end-of-life stage. According to palliative care standards, patients and theircarers are the unit of care; in reality, however, this standard is not being met.

KW - Former carers

KW - interviews

KW - lived experience

KW - palliative care

KW - Parkinson’s disease

U2 - 10.1177/0269216310371414

DO - 10.1177/0269216310371414

M3 - Article

VL - 24

SP - 731

EP - 736

JO - Palliative Medicine

T2 - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

IS - 7

ER -