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The caregivers of persons living with HIV/AIDS: the experience of caring for a dying family member at home Stajduhar, Kelli Isabel
Abstract
While some research has been conducted on HIV/AIDS family caregiving, it is limited in addressing the experience of family members who provide care to persons with HIV/AIDS (PWHIV/AIDS) who are dying at home and planning for a home death. Furthermore, much of the general family caregiving research focuses on caregiving tasks and related effects on the caregiver. The purpose of this study was to explore the day-to-day experiences of family members who care for their dying loved one at home with HIV/AIDS. Seven family members who were caring for or had cared for a PWHIV/AIDS at home in the last year were interviewed using an unstructured interview format. Verbatim transcripts of the interviews were analyzed using the constant-comparative method and the methodological guidance of grounded theory. The data analysis contributed to the development of a substantive theory of HIV/AIDS family caregiving. The findings revealed that work characterized the experiences of family members while they lived in a world of uncertainty and stigma. Promising to fulfill the wishes of the loved one lead family members to engage in both personal and pragmatic work. In order to manage their work, caregivers developed various strategies such as seeking support and working as a team. Several conditions affected the caregivers' strategies such as the accessibility of services and the nature of support. These conditions and strategies ultimately resulted in a variety of consequences that affected the caregivers' bereavment. HIV/AIDS family caregiving was an intense, emotional, and powerful experience. It was an experience filled with pride and enrichment, or conversely, with anger and disillusionment. Coping with the extensive demands of HIV/AIDS family caregiving required considerable time, energy, and commitment that often went unrecognized and unsupported. Findings reflect a significant need for interventions designed to provide direct and effective support for HIV/AIDS family caregivers. Failure to address the needs of caregivers is not only morally and ethically unacceptable but also demonstrates a myopic view of the caregivers' experiences. The richness of the caregivers' stories and the impact on their lives cannot be denied and they demand creative, professional solutions.
Item Metadata
Title |
The caregivers of persons living with HIV/AIDS: the experience of caring for a dying family member at home
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Creator | |
Publisher |
University of British Columbia
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Date Issued |
1995
|
Description |
While some research has been conducted on HIV/AIDS family
caregiving, it is limited in addressing the experience of family members who
provide care to persons with HIV/AIDS (PWHIV/AIDS) who are dying at
home and planning for a home death. Furthermore, much of the general
family caregiving research focuses on caregiving tasks and related effects on
the caregiver. The purpose of this study was to explore the day-to-day
experiences of family members who care for their dying loved one at home
with HIV/AIDS. Seven family members who were caring for or had cared for
a PWHIV/AIDS at home in the last year were interviewed using an
unstructured interview format. Verbatim transcripts of the interviews were
analyzed using the constant-comparative method and the methodological
guidance of grounded theory.
The data analysis contributed to the development of a substantive theory
of HIV/AIDS family caregiving. The findings revealed that work
characterized the experiences of family members while they lived in a world of
uncertainty and stigma. Promising to fulfill the wishes of the loved one lead
family members to engage in both personal and pragmatic work. In order to
manage their work, caregivers developed various strategies such as seeking
support and working as a team. Several conditions affected the caregivers' strategies such as the accessibility of services and the nature of support. These
conditions and strategies ultimately resulted in a variety of consequences that
affected the caregivers' bereavment.
HIV/AIDS family caregiving was an intense, emotional, and powerful
experience. It was an experience filled with pride and enrichment, or
conversely, with anger and disillusionment. Coping with the extensive
demands of HIV/AIDS family caregiving required considerable time, energy,
and commitment that often went unrecognized and unsupported. Findings
reflect a significant need for interventions designed to provide direct and
effective support for HIV/AIDS family caregivers. Failure to address the
needs of caregivers is not only morally and ethically unacceptable but also
demonstrates a myopic view of the caregivers' experiences. The richness of
the caregivers' stories and the impact on their lives cannot be denied and they
demand creative, professional solutions.
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Extent |
7702363 bytes
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Genre | |
Type | |
File Format |
application/pdf
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Language |
eng
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Date Available |
2009-01-31
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Provider |
Vancouver : University of British Columbia Library
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Rights |
For non-commercial purposes only, such as research, private study and education. Additional conditions apply, see Terms of Use https://open.library.ubc.ca/terms_of_use.
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DOI |
10.14288/1.0087021
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URI | |
Degree | |
Program | |
Affiliation | |
Degree Grantor |
University of British Columbia
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Graduation Date |
1995-11
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Campus | |
Scholarly Level |
Graduate
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Aggregated Source Repository |
DSpace
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Item Media
Item Citations and Data
Rights
For non-commercial purposes only, such as research, private study and education. Additional conditions apply, see Terms of Use https://open.library.ubc.ca/terms_of_use.