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

Hdl Handle:
http://hdl.handle.net/10147/620834
Title:
Palliative care for Parkinson’s disease: Patient and carer’s perspectives explored through qualitative interview
Authors:
Siobhan Fox; Alison Cashell; George W. Kernohan; Marie Lynch; Ciara McGlade; Tony O’Brien; Sean S. O’Sullivan; Mary J Foley; Suzanne Timmons
Publisher:
Sage Publications
Journal:
Palliative medicine
Issue Date:
28-Sep-2016
URI:
http://hdl.handle.net/10147/620834
Additional Links:
http://pmj.sagepub.com/content/early/2016/09/27/0269216316669922.abstract
Item Type:
Article In Press
Description:
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.
Keywords:
PARKINSON'S DISEASE; PALLIATIVE CARE

Full metadata record

DC FieldValue Language
dc.contributor.authorSiobhan Foxen
dc.contributor.authorAlison Cashellen
dc.contributor.authorGeorge W. Kernohanen
dc.contributor.authorMarie Lynchen
dc.contributor.authorCiara McGladeen
dc.contributor.authorTony O’Brienen
dc.contributor.authorSean S. O’Sullivanen
dc.contributor.authorMary J Foleyen
dc.contributor.authorSuzanne Timmonsen
dc.date.accessioned2016-10-03T11:16:19Z-
dc.date.available2016-10-03T11:16:19Z-
dc.date.issued2016-09-28-
dc.identifier.urihttp://hdl.handle.net/10147/620834-
dc.descriptionBackground: 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.publisherSage Publicationsen
dc.relation.urlhttp://pmj.sagepub.com/content/early/2016/09/27/0269216316669922.abstracten
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/*
dc.subjectPARKINSON'S DISEASEen
dc.subjectPALLIATIVE CAREen
dc.titlePalliative care for Parkinson’s disease: Patient and carer’s perspectives explored through qualitative interviewen
dc.typeArticle In Pressen
dc.identifier.journalPalliative medicineen
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