Caregivers for people at end of life in advanced age: knowing, doing and negotiating care.

Show simple item record Wiles, Janine en Moeke-Maxwell, Tess en Williams, Lisa en Black, Stella en Trussardi, Gabriella en Gott, Caryl en 2019-03-15T01:44:25Z en 2018-11 en
dc.identifier.issn 0002-0729 en
dc.identifier.uri en
dc.description.abstract Background:the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them. Design and setting:people in the LiLACS NZ longitudinal study of advanced age identified a carer to be interviewed after their death. Nominated caregivers were contacted 3-6 months after an older person's death and invited to take part in the current study. Subjects:fifty-eight interviews were conducted with carers of 52 people in advanced age, 20 Māori and 32 non-Māori. The majority of the 58 carers were in their 60 s and were women. Methods:guided-conversation interviews covered end of life preferences and experiences, needs and gaps in support, arrangements after death, and experiences of bereavement. Rigorous data analysis included multiple researchers identifying and interrogating themes across and within the transcripts, and feedback and discussion with participants. Results:we identify a typology of nine categories of care, and argue that the support and care provided by family should be understood as going beyond simple task-based transactions. We present a model of end of life care describing and explaining inter-related aspects of knowing, doing and negotiating care tasks. Conclusions:this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age. en
dc.format.medium Print en
dc.language eng en
dc.relation.ispartofseries Age and ageing en
dc.rights Items in ResearchSpace are protected by copyright, with all rights reserved, unless otherwise indicated. Previously published items are made available in accordance with the copyright policy of the publisher. en
dc.rights.uri en
dc.subject Humans en
dc.subject Palliative Care en
dc.subject Terminal Care en
dc.subject Retrospective Studies en
dc.subject Longitudinal Studies en
dc.subject Adaptation, Psychological en
dc.subject Health Knowledge, Attitudes, Practice en
dc.subject Negotiating en
dc.subject Family Relations en
dc.subject Professional-Family Relations en
dc.subject Age Factors en
dc.subject Aging en
dc.subject Social Support en
dc.subject Adult en
dc.subject Aged en
dc.subject Aged, 80 and over en
dc.subject Middle Aged en
dc.subject Caregivers en
dc.subject New Zealand en
dc.subject Female en
dc.subject Male en
dc.subject Interviews as Topic en
dc.subject Young Adult en
dc.title Caregivers for people at end of life in advanced age: knowing, doing and negotiating care. en
dc.type Journal Article en
dc.identifier.doi 10.1093/ageing/afy129 en
pubs.issue 6 en
pubs.begin-page 887 en
pubs.volume 47 en
dc.rights.holder Copyright: The author en
pubs.end-page 895 en
pubs.publication-status Published en
dc.rights.accessrights en
pubs.subtype Research Support, Non-U.S. Gov't en
pubs.subtype Journal Article en
pubs.elements-id 755800 en Medical and Health Sciences en Nursing en Population Health en Social & Community Health en
dc.identifier.eissn 1468-2834 en
pubs.record-created-at-source-date 2018-08-31 en
pubs.dimensions-id 30165558 en

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