The roles and experiences of informal carers providing care to people with advanced cancer in Africa-A systematic review and critical interpretive analysis

Rutendo G Gambe; Joseph Clark; Stephanie A Meddick-Dyson; Blessing O Ukoha-Kalu; Gertrude N Nyaaba; Fliss E M Murtagh

doi:10.1371/journal.pgph.0001785

The roles and experiences of informal carers providing care to people with advanced cancer in Africa-A systematic review and critical interpretive analysis

PLOS Glob Public Health. 2023 Apr 7;3(4):e0001785. doi: 10.1371/journal.pgph.0001785. eCollection 2023.

Authors

Rutendo G Gambe¹, Joseph Clark¹, Stephanie A Meddick-Dyson¹, Blessing O Ukoha-Kalu¹, Gertrude N Nyaaba¹, Fliss E M Murtagh¹

Affiliation

¹ Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom.

Abstract

There is an increasing prevalence of cancer in Africa with approximately 80% of cancers diagnosed at an advanced stage. High out-of-pocket healthcare costs and overstretched health systems lead to heavy reliance on informal carers for cancer care. This study aims to explore the roles and experiences of informal carers including the impact of cancer care on individuals and communities and support available for carers. We carried out a systematic review following PRISMA reporting guidelines and used critical interpretative synthesis to identify themes and develop an informal carers' experience framework. We searched nine databases and screened 8,123 articles from which 31 studies were included in the review. Most studies were from Sub-Saharan Africa (29/31, 94%), particularly Uganda (9, 29%). Carers were mostly women, aged 30-40 years, and siblings, spouses, or children. Caring roles included care coordination, fundraising, and emotional support. Caring was time-consuming with some carers reporting 121 hours/week of caring, associated with the inability to pursue paid work and depression. Four themes demonstrated carers' experiences: 1) intrapersonal factors: strong sense of familial obligation, and grappling with gender roles, 2) interpersonal factors: impact of a cancer diagnosis on households, changing social and sexual relationships, 3) community factors: navigating cultural norms on nature and location of care, and 4) health system influences: barriers to accessing healthcare services, and tensions between traditional and biomedical medicine. These themes aligned with Bronfenbrenner's social ecological model which aided our development of a framework for understanding informal carers' experiences'. Our review highlights multifaceted roles and experiences of informal carers in Africa, amidst cultural and community impacts. Carers experience a strong obligation and willingly undertake the role of carer, but at the expense of their social, economic, and psychological wellbeing. Support for carers, including flexible working hours/ carers' allowance, should be incorporated as part of universal health coverage.

Copyright: © 2023 Gambe et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Grants and funding

This work was completed as part of a National Institute for Health and Care Research (NIHR) Academic Clinical Fellowship (https://www.nihr.ac.uk/explore-nihr/academy-programmes/integrated-academic-training.htm) at Hull York Medical School (https://www.hyms.ac.uk/research/research-centres-and-groups/wolfson) (RG). The authors received no specific funding for this work. Professor Fliss Murtagh is an NIHR Senior Investigator. The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care.