Adejoh, S, Boele, F orcid.org/0000-0003-0409-7949, Akeju, D et al. (7 more authors) (2021) The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study. Palliative Medicine, 35 (3). pp. 552-562. ISSN 0269-2163
Abstract
Background:
Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions.
Aim:
We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe.
Design:
Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used.
Setting/participants:
Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries.
Results:
A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care.
Conclusions:
The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2020. This is an open access article under the terms of the Creative Commons Attribution 4.0 International (CC BY 4.0) (https://creativecommons.org/licenses/by/4.0/) |
Keywords: | Africa South of the Sahara; Caregivers; Neoplasms; Palliative Care; Qualitative Research |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Nuffield Centre for International Health and Development (Leeds) |
Funding Information: | Funder Grant number MRC (Medical Research Council) MR/S014535/1 Yorkshire Cancer Research Not Known |
Depositing User: | Symplectic Publications |
Date Deposited: | 30 Oct 2020 16:34 |
Last Modified: | 22 Jul 2022 19:37 |
Status: | Published |
Publisher: | SAGE |
Identification Number: | 10.1177/0269216320974925 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:167431 |