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Permanent link (DOI): https://doi.org/10.7939/R32W6Q

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The lived experience of family caregivers who provided end-of-life care to a relative with advanced dementia Open Access

Descriptions

Other title
Subject/Keyword
family caregivers
interpretive phenomenology
end of life
dementia
Type of item
Thesis
Degree grantor
University of Alberta
Author or creator
Peacock, Shelley
Supervisor and department
Duggleby, Wendy (Faculty of Nursing)
Koop, Priscilla (Faculty of Nursing)
Examining committee member and department
Triscott, Jean (Faculty of Medicine)
Hunter, Kathleen (Faculty of Nursing)
Raffin-Bouchal, Shelley (Faculty of Nursing, University of Calgary)
Lui, Lili (Occupational Therapy)
Department
Faculty of Nursing
Specialization

Date accepted
2011-01-30T03:04:32Z
Graduation date
2011-06
Degree
Doctor of Philosophy
Degree level
Doctoral
Abstract
With aging of the baby boomer population, older adults living longer, and no known cure for dementia, the prevalence of dementia in older adults will inevitably rise. Dementia is a terminal illness, although it may not be recognized as such. Family caregivers to persons with dementia provide invaluable care, often at the expense of their own health and well-being. Over the past two decades there has been an abundance of research that examines the various and complex aspects of caring for a relative with dementia. However, there is a paucity of research that has been conducted on the experiences of family caregivers providing end-of-life care. The conceptual framework that guides this research is based on the work of Martin Heidegger. A thorough search of the literature reveals that the main themes of this end-of-life experience studied to date are the experience of grief and loss, and the manifestations of depression in family caregivers. A number of gaps in the literature remain that limit our understanding of the end-of-life care experience. The purpose of the present study is to begin to address this neglected area of research. As a result, the research question is: “What is the meaning of the lived experience of family caregivers who provided end-of-life care for a relative who died with advanced dementia?” This question was addressed using an interpretive phenomenology based on the work of Munhall. The study utilized a purposeful sample of family caregivers (n = 11) whose relative with dementia died in the last year. Two to three in-person, unstructured interviews were completed with each participant as a way to glean an understanding of their experiences and offer opportunities for the participant to verify their end-of-life caregiving story. A total of 27 interviews were recorded and transcribed verbatim. Transcripts were hermeneutically analyzed in order to create individual narratives for each participant, reveal the essence of this experience, discuss the influence of the life worlds, consider the taken for granted, and generate an overall study narrative. These findings reveal the complex nature of the end-of-life caregiving experience with dementia.
Language
English
DOI
doi:10.7939/R32W6Q
Rights
License granted by Shelley Peacock (speacock@ualberta.ca) on 2011-01-28T17:31:19Z (GMT): Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of the above terms. The author reserves all other publication and other rights in association with the copyright in the thesis, and except as herein provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.
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