@article{43109eb0b90349539b31d53d95640227,
title = "An exploration into the palliative and end-of-life experiences of carers of people with Parkinson{\textquoteright}s disease",
abstract = "Although most people with Parkinson{\textquoteright}s disease are cared for in the community, little is known about family members{\textquoteright}lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers{\textquoteright} lived experiences ofpalliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson{\textquoteright}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{\textquoteright}s disease not accessing specialist palliative care services. Participants also reflected upon thephysical and psychological impact of caring in the advanced stage of Parkinson{\textquoteright}s. A multi-disciplinary team-based approachwas advocated by participants. These findings provide important insights into the experience of caregiving to patientswith Parkinson{\textquoteright}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{\textquoteright}s disease",
author = "Felicity Hasson and George Kernohan and Marian McLaughlin and Mary Waldron and Dorry McLaughlin and Helen Chambers and Barbara Cochrane",
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year = "2010",
month = jun,
day = "4",
doi = "10.1177/0269216310371414",
language = "English",
volume = "24",
pages = "731--736",
journal = "Palliative Medicine",
issn = "0269-2163",
publisher = "SAGE Publications",
number = "7",
}