Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview

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dc.contributor.authorFox, Siobhán
dc.contributor.authorCashell, Alison
dc.contributor.authorKernohan, W. George
dc.contributor.authorLynch, Marie
dc.contributor.authorMcGlade, Ciara
dc.contributor.authorO'Brien, Tony
dc.contributor.authorO'Sullivan, Sean S.
dc.contributor.authorFoley, Mary J.
dc.contributor.authorTimmons, Suzanne
dc.contributor.funderIrish Hospice Foundationen
dc.date.accessioned2018-02-27T15:20:54Z
dc.date.available2018-02-27T15:20:54Z
dc.date.issued2016-09-28
dc.date.updated2018-02-27T15:13:40Z
dc.description.abstractBackground: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views of people with Parkinson’s disease and their carers about palliative care. Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) to examine perceptions about/understanding of palliative care. Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), across three Movement Disorder Clinics in the Republic of Ireland. Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.en
dc.description.statusPeer revieweden
dc.description.versionAccepted Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.citationFox, S., Cashell, A., Kernohan, W. G., Lynch, M., McGlade, C., O’Brien, T., O’Sullivan, S. S., Foley, M. J. and Timmons, S. (2017) 'Palliative care for Parkinson’s disease: Patient and carer’s perspectives explored through qualitative interview', Palliative Medicine, 31(7), pp. 634-641. doi: 10.1177/0269216316669922en
dc.identifier.doi10.1177/0269216316669922
dc.identifier.endpage641en
dc.identifier.issn0269-2163
dc.identifier.issued7en
dc.identifier.journaltitlePalliative Medicineen
dc.identifier.startpage634en
dc.identifier.urihttps://hdl.handle.net/10468/5557
dc.identifier.volume31en
dc.language.isoenen
dc.publisherSage Publicationsen
dc.relation.urihttp://journals.sagepub.com/doi/abs/10.1177/0269216316669922
dc.rights© The Authors 2016. Reprinted by permission of SAGE Publications.en
dc.subjectCaregiversen
dc.subjectPalliative careen
dc.subjectQualitative researchen
dc.subjectQuality of lifeen
dc.subjectParkinson’s diseaseen
dc.titlePalliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interviewen
dc.typeArticle (peer-reviewed)en
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