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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 and Chambers, Helen (2010) Living and coping with Parkinson's disease: Perceptions of informal carers. Palliative Medicine, 25 (2). pp. 177-182. [Journal article]

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URL: http://pmj.sagepub.com/content/25/2/177.full.pdf+html

DOI: 10.1177/0269216310385604


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.

Item Type:Journal article
Keywords:Informal carers, palliative care, Parkinson’s Disease, qualitative research
Faculties and Schools:Faculty of Life and Health Sciences
Faculty of Life and Health Sciences > School of Nursing
Research Institutes and Groups:Institute of Nursing and Health Research
Institute of Nursing and Health Research > Managing Chronic Illness Research Centre
Psychology Research Institute > Health, Education and Well-being
Psychology Research Institute
ID Code:18181
Deposited By: Professor George Kernohan
Deposited On:05 Jul 2011 14:25
Last Modified:09 Dec 2015 10:56

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