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‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting

BACKGROUND: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents prac...

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Detalles Bibliográficos
Autores principales: Salifu, Yakubu, Almack, Kathryn, Caswell, Glenys
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7797613/
https://www.ncbi.nlm.nih.gov/pubmed/32945248
http://dx.doi.org/10.1177/0269216320951107
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author Salifu, Yakubu
Almack, Kathryn
Caswell, Glenys
author_facet Salifu, Yakubu
Almack, Kathryn
Caswell, Glenys
author_sort Salifu, Yakubu
collection PubMed
description BACKGROUND: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. AIM: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. DESIGN: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. PARTICIPANTS: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). FINDINGS: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. CONCLUSION: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.
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spelling pubmed-77976132021-01-21 ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting Salifu, Yakubu Almack, Kathryn Caswell, Glenys Palliat Med Original Articles BACKGROUND: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. AIM: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. DESIGN: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. PARTICIPANTS: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). FINDINGS: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. CONCLUSION: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals. SAGE Publications 2020-09-18 2021-01 /pmc/articles/PMC7797613/ /pubmed/32945248 http://dx.doi.org/10.1177/0269216320951107 Text en © The Author(s) 2020 https://creativecommons.org/licenses/by/4.0/ This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Articles
Salifu, Yakubu
Almack, Kathryn
Caswell, Glenys
‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting
title ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting
title_full ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting
title_fullStr ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting
title_full_unstemmed ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting
title_short ‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting
title_sort ‘my wife is my doctor at home’: a qualitative study exploring the challenges of home-based palliative care in a resource-poor setting
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7797613/
https://www.ncbi.nlm.nih.gov/pubmed/32945248
http://dx.doi.org/10.1177/0269216320951107
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