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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 and Cochrane, Barbara (2010) An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliative Medicine, 24 (7). pp. 731-736. [Journal article]

Full text not available from this repository.

URL: http://pmj.sagepub.com/content/24/7/731.full.pdf+html

DOI: 10.1177/0269216310371414


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.

Item Type:Journal article
Keywords:Former carers, interviews, lived experience, palliative care, Parkinson’s disease
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
ID Code:18188
Deposited By: Professor George Kernohan
Deposited On:05 Jul 2011 15:46
Last Modified:20 Feb 2012 15:26

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