Living and coping with Parkinson's disease: Perceptions of informal carers

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

Research output: Contribution to journalArticle

73 Citations (Scopus)

Abstract

A review of the literature highlights the important role informal carers play in the provision of palliative care in thecommunity. In order to explore the caring experience of relatives with Parkinson’s Disease (PD), interviews wereconducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis.All caregivers were spouses, the majority female (n¼17) and all were responsible for providing physical, social andemotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespreadburden of providing care on the emotional and physical health of the caregivers. The financial implications for providingcare were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a hugeemotional impact on relatives and carers, carers did not feel health professionals integrated them within the caringjourney. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting insymptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning andtiming of palliative care were common with many viewing it as being synonymous with cancer and not applicable to aperson with PD. As the well-being of the informal carer directly influences the care of the person with PD, supportinterventions are required to relieve their burden, maximize outcomes and ensure targeting of services.
LanguageEnglish
Pages177-182
JournalPalliative Medicine
Volume25
Issue number2
DOIs
Publication statusPublished - 15 Oct 2010

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Caregivers
Parkinson Disease
Palliative Care
Interviews
Health
Home Care Services
Neoplasms

Keywords

  • Informal carers
  • palliative care
  • Parkinson’s Disease
  • qualitative research

Cite this

McLaughlin, Dorry ; Hasson, Felicity ; Kernohan, George ; Waldron, Mary ; McLaughlin, Marian ; Cochrane, Barbara ; Chambers, Helen. / Living and coping with Parkinson's disease: Perceptions of informal carers. In: Palliative Medicine. 2010 ; Vol. 25, No. 2. pp. 177-182.
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note = "Reference text: 1. Jankovic J. Parkinson’s disease: clinical features and diagnosis. J Neurosurg Psychiatr 2008; 79: 368–376. 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 S and Oldham L. Palliative care and support for people with neurodegenerative conditions and their carers. Int J Palliat Nurs 2005; 12: 368–377. 4. Goy ER, Cater JH and Ganzini L. Parkinson 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. Secker DL and Brown RG. Cognitive behavioural therapy (CBT) for carers of patients with Parkinson’s disease: a preliminary randomised controlled trial. J Neurol Neurosurg Psychiatry 2005; 76: 491–497. 7. Parkinson’s Disease Society. Just invisible: a summary. London: Parkinson’s Disease Society, 2005. 8. Parkinson’s 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, http:// www.parkinsons.org.uk/pdf/memberssurvey_northernireland. pdf (accessed 19 May 2010). 9. Carter J, Stewart B, Archbold P, Inoue I, Jaglin J, Lannon M, et al. The Parkinson’s Study Group. Living with a person who has Parkinson’s disease: the spouse’s perspective by stage of disease. Mov Disord 1998; 13: 20–28. 10. Payne S and Ellis-Hall C. Chronic and terminal illness: new perspectives on being a carer. Oxford: Oxford University Press, 2001. 11. Mai T, Schnepp W and Hobmann U. The situation of people suffering from Parkinson’s disease and their relatives in the mirror of literature – an overview. Pflege 2010; 23: 81–98. 12. Edwards NE and Scheetz PS. Predictors of burden for caregivers of patients with Parkinson’s disease. J Neurosci Nur 2002; 34: 184–190. 13. Lyons KS, Stewart BJ, Archold PG, Carter JH and Perrin NA. Pessimism and optimism as early warning signs for compromised health for caregivers of patients with Parkinson’s disease. Nurs Researcher 2004; 53: 354–362. 14. Schrag A, Hovris A, Morley D, Quinn N and Jahanshahi M. Caregiver-burden in Parkinson’s disease is closely associated with psychiatric symptoms, falls and disability. Parkinsonism Relat Disord 2006; 12: 35–41. 15. Stroebe M, Schut H and Stroebe W. Health outcomes of bereavement. Lancet 2007; 370: 1960–1973. 16. 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. Neurol Rep 2000; 24: 140–144. 17. Thomas S and MacMahon D. Parkinson’s disease, palliative care and older people. Nurs Older People 2004; 16: 22–27. 18. Muller T and Woitalla D. Quality of life, caregiver burden and insurance in patients with Parkinson’s disease in Germany. Eur J Neurol 2010, [Epub ahead of print] http://onlinelibrary.wiley.com/doi/10.1111/j.1468-1331. 2010.03033.x/pdf. 19. Speer DC. Predicting Parkinson’s disease patient and caregiver adjustment: preliminary findings. Behav Health Aging 1993; 3: 139–146. 20. Davey C, Wiles R, Ashburn A and Murphy C. Falling in Parkinson’s disease: impact on informal carers. Disabil Rehabil 2004; 26: 1360–1366. 21. Giles S and Miyasaki J. Palliative stage Parkinson’s disease: patient and family experiences of health-care services. Palliat Med 2009; 23: 120–125. 22. Lo¨ kk J. Reduced life-space of non-professional caregivers to Parkinson’s disease patients with increased disease duration. Clin Neurol Neurosurg 2009; 111: 583–587. 23. Dressen C, Brandel JP, Scheider A, Magar Y, Renon D and Siegler M. Effects of Parkinson’s disease on qualityof- life patients’ spouses: a qualitative study. Rev Neurol (Paris) 2007; 163: 801–807. 24. National Institute for Clinical Excellence. Guidance on cancer services. Improving supportive and palliative care for adults with cancer. The manual. London: NICE, 2004. 25. 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, http://www.neural.org.uk/store/assets/files/126/ original/PD_APPG_Report_Please_Mind_the_Gap.pdf. 26. Axelrod L, Baker M, Bryan K, Gage H, Kaye J, Trend P, Wade D. Provision of community services for people with Parkinson’s disease: a qualitative study of patient and carer perceptions. World Congress on Parkinson’s Disease and Related Disorders. December: Amsterdam. 2007. 27. Lloyd M. Where has all the care management gone? The challenge of Parkinson’s disease to health and social care interface. Br J Soc Work 2000; 30: 737–754. 28. Parkinson’s Disease Society, Multiple Sclerosis Society & the Royal College of Nursing. Developing integrated health and social care services for long-term conditions. Report form a symposium examining the interface between community matrons and specialist nurses for Parkinson’s disease and Multiple Sclerosis. London: Multiple Sclerosis Society, Parkinson’s Disease Society of the United Kingdom and the Royal College of Nursing, 2006. 29. Department of Health. The national service framework for long-term conditions. London: The Stationery Office, 2005. 30. Hudson P, Toye C and Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med 2006; 20: 87–94. 31. Addington-Hall JM. Extending palliative care to chronic conditions. Eur J Palliat Care 2005; 12: 14–17. 32. Miles MB and Huberman AM. Qualitative data analysis. Newbury Park: Sage, 1994.",
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Living and coping with Parkinson's disease: Perceptions of informal carers. / McLaughlin, Dorry; Hasson, Felicity; Kernohan, George; Waldron, Mary; McLaughlin, Marian; Cochrane, Barbara; Chambers, Helen.

In: Palliative Medicine, Vol. 25, No. 2, 15.10.2010, p. 177-182.

Research output: Contribution to journalArticle

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N1 - Reference text: 1. Jankovic J. Parkinson’s disease: clinical features and diagnosis. J Neurosurg Psychiatr 2008; 79: 368–376. 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 S and Oldham L. Palliative care and support for people with neurodegenerative conditions and their carers. Int J Palliat Nurs 2005; 12: 368–377. 4. Goy ER, Cater JH and Ganzini L. Parkinson 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. Secker DL and Brown RG. Cognitive behavioural therapy (CBT) for carers of patients with Parkinson’s disease: a preliminary randomised controlled trial. J Neurol Neurosurg Psychiatry 2005; 76: 491–497. 7. Parkinson’s Disease Society. Just invisible: a summary. London: Parkinson’s Disease Society, 2005. 8. Parkinson’s 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, http:// www.parkinsons.org.uk/pdf/memberssurvey_northernireland. pdf (accessed 19 May 2010). 9. Carter J, Stewart B, Archbold P, Inoue I, Jaglin J, Lannon M, et al. The Parkinson’s Study Group. Living with a person who has Parkinson’s disease: the spouse’s perspective by stage of disease. Mov Disord 1998; 13: 20–28. 10. Payne S and Ellis-Hall C. Chronic and terminal illness: new perspectives on being a carer. Oxford: Oxford University Press, 2001. 11. Mai T, Schnepp W and Hobmann U. The situation of people suffering from Parkinson’s disease and their relatives in the mirror of literature – an overview. Pflege 2010; 23: 81–98. 12. Edwards NE and Scheetz PS. Predictors of burden for caregivers of patients with Parkinson’s disease. J Neurosci Nur 2002; 34: 184–190. 13. Lyons KS, Stewart BJ, Archold PG, Carter JH and Perrin NA. Pessimism and optimism as early warning signs for compromised health for caregivers of patients with Parkinson’s disease. Nurs Researcher 2004; 53: 354–362. 14. Schrag A, Hovris A, Morley D, Quinn N and Jahanshahi M. Caregiver-burden in Parkinson’s disease is closely associated with psychiatric symptoms, falls and disability. Parkinsonism Relat Disord 2006; 12: 35–41. 15. Stroebe M, Schut H and Stroebe W. Health outcomes of bereavement. Lancet 2007; 370: 1960–1973. 16. 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. Neurol Rep 2000; 24: 140–144. 17. Thomas S and MacMahon D. Parkinson’s disease, palliative care and older people. Nurs Older People 2004; 16: 22–27. 18. Muller T and Woitalla D. Quality of life, caregiver burden and insurance in patients with Parkinson’s disease in Germany. Eur J Neurol 2010, [Epub ahead of print] http://onlinelibrary.wiley.com/doi/10.1111/j.1468-1331. 2010.03033.x/pdf. 19. Speer DC. Predicting Parkinson’s disease patient and caregiver adjustment: preliminary findings. Behav Health Aging 1993; 3: 139–146. 20. Davey C, Wiles R, Ashburn A and Murphy C. Falling in Parkinson’s disease: impact on informal carers. Disabil Rehabil 2004; 26: 1360–1366. 21. Giles S and Miyasaki J. Palliative stage Parkinson’s disease: patient and family experiences of health-care services. Palliat Med 2009; 23: 120–125. 22. Lo¨ kk J. Reduced life-space of non-professional caregivers to Parkinson’s disease patients with increased disease duration. Clin Neurol Neurosurg 2009; 111: 583–587. 23. Dressen C, Brandel JP, Scheider A, Magar Y, Renon D and Siegler M. Effects of Parkinson’s disease on qualityof- life patients’ spouses: a qualitative study. Rev Neurol (Paris) 2007; 163: 801–807. 24. National Institute for Clinical Excellence. Guidance on cancer services. Improving supportive and palliative care for adults with cancer. The manual. London: NICE, 2004. 25. 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, http://www.neural.org.uk/store/assets/files/126/ original/PD_APPG_Report_Please_Mind_the_Gap.pdf. 26. Axelrod L, Baker M, Bryan K, Gage H, Kaye J, Trend P, Wade D. Provision of community services for people with Parkinson’s disease: a qualitative study of patient and carer perceptions. World Congress on Parkinson’s Disease and Related Disorders. December: Amsterdam. 2007. 27. Lloyd M. Where has all the care management gone? The challenge of Parkinson’s disease to health and social care interface. Br J Soc Work 2000; 30: 737–754. 28. Parkinson’s Disease Society, Multiple Sclerosis Society & the Royal College of Nursing. Developing integrated health and social care services for long-term conditions. Report form a symposium examining the interface between community matrons and specialist nurses for Parkinson’s disease and Multiple Sclerosis. London: Multiple Sclerosis Society, Parkinson’s Disease Society of the United Kingdom and the Royal College of Nursing, 2006. 29. Department of Health. The national service framework for long-term conditions. London: The Stationery Office, 2005. 30. Hudson P, Toye C and Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med 2006; 20: 87–94. 31. Addington-Hall JM. Extending palliative care to chronic conditions. Eur J Palliat Care 2005; 12: 14–17. 32. Miles MB and Huberman AM. Qualitative data analysis. Newbury Park: Sage, 1994.

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AB - A review of the literature highlights the important role informal carers play in the provision of palliative care in thecommunity. In order to explore the caring experience of relatives with Parkinson’s Disease (PD), interviews wereconducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis.All caregivers were spouses, the majority female (n¼17) and all were responsible for providing physical, social andemotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespreadburden of providing care on the emotional and physical health of the caregivers. The financial implications for providingcare were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a hugeemotional impact on relatives and carers, carers did not feel health professionals integrated them within the caringjourney. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting insymptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning andtiming of palliative care were common with many viewing it as being synonymous with cancer and not applicable to aperson with PD. As the well-being of the informal carer directly influences the care of the person with PD, supportinterventions are required to relieve their burden, maximize outcomes and ensure targeting of services.

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