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

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dc.contributor.author Fox, Siobhán
dc.contributor.author Cashell, Alison
dc.contributor.author Kernohan, W. George
dc.contributor.author Lynch, Marie
dc.contributor.author McGlade, Ciara
dc.contributor.author O'Brien, Tony
dc.contributor.author O'Sullivan, Sean S.
dc.contributor.author Foley, Mary J.
dc.contributor.author Timmons, Suzanne
dc.date.accessioned 2018-02-27T15:20:54Z
dc.date.available 2018-02-27T15:20:54Z
dc.date.issued 2016-09-28
dc.identifier.citation Fox, 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: 10.1177/0269216316669922 en
dc.identifier.volume 31 en
dc.identifier.issued 7 en
dc.identifier.startpage 634 en
dc.identifier.endpage 641 en
dc.identifier.issn 0269-2163
dc.identifier.uri http://hdl.handle.net/10468/5557
dc.identifier.doi 10.1177/0269216316669922
dc.description.abstract Background: 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.format.mimetype application/pdf en
dc.language.iso en en
dc.publisher Sage Publications en
dc.relation.uri http://journals.sagepub.com/doi/abs/10.1177/0269216316669922
dc.rights © The Authors 2016. Reprinted by permission of SAGE Publications. en
dc.subject Caregivers en
dc.subject Palliative care en
dc.subject Qualitative research en
dc.subject Quality of life en
dc.subject Parkinson’s disease en
dc.title Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview en
dc.type Article (peer-reviewed) en
dc.internal.authorcontactother Siobhan Fox, Clinical Gerontology & Rehabilitation, University College Cork, Cork, Ireland. +353-21-490-3000 Email: s.fox@ucc.ie en
dc.internal.availability Full text available en
dc.date.updated 2018-02-27T15:13:40Z
dc.description.version Accepted Version en
dc.internal.rssid 427627090
dc.contributor.funder Irish Hospice Foundation en
dc.description.status Peer reviewed en
dc.identifier.journaltitle Palliative Medicine en
dc.internal.copyrightchecked No !!CORA!! en
dc.internal.licenseacceptance Yes en
dc.internal.IRISemailaddress s.fox@ucc.ie en


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