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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 (2011) Living and coping with Parkinson's disease: Perceptions of informal carers. Palliative Medicine, 25 (2). pp. 177-182. [Journal article]

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DOI: 10.1177/0269216310385604


A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson’s Disease (PD), interviews were conducted 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 and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.

Item Type:Journal article
Faculties and Schools:Faculty of Life and Health Sciences > School of Nursing
Faculty of Life and Health Sciences
Faculty of Life and Health Sciences > School of Psychology
Research Institutes and Groups:Institute of Nursing and Health Research
Psychology Research Institute
Institute of Nursing and Health Research > Managing Chronic Illness Research Centre
Institute of Nursing and Health Research > Person-centred Practice Research Centre
Psychology Research Institute > Health, Education and Well-being
ID Code:20832
Deposited By: Dr Felicity Hasson
Deposited On:18 Jun 2012 10:36
Last Modified:07 Aug 2017 14:35

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