Gambe Rutendo G, Clark Joseph, Meddick-Dyson Stephanie A, Ukoha-Kalu Blessing O, Nyaaba Gertrude N, Murtagh Fliss E M
Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, United Kingdom.
PLOS Glob Public Health. 2023 Apr 7;3(4):e0001785. doi: 10.1371/journal.pgph.0001785. eCollection 2023.
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.
非洲癌症患病率日益上升,约80%的癌症在晚期才被诊断出来。高额的自付医疗费用以及不堪重负的卫生系统导致在癌症护理方面严重依赖非正式护理人员。本研究旨在探讨非正式护理人员的角色和经历,包括癌症护理对个人和社区的影响以及为护理人员提供的支持。我们按照PRISMA报告指南进行了系统综述,并使用批判性解释性综合分析来确定主题并构建一个非正式护理人员的经历框架。我们检索了九个数据库,筛选了8123篇文章,其中31项研究被纳入综述。大多数研究来自撒哈拉以南非洲地区(29/31,94%),尤其是乌干达(9项,29%)。护理人员大多为30至40岁的女性,以及兄弟姐妹、配偶或子女。护理职责包括护理协调、筹集资金和情感支持。护理工作耗时巨大,一些护理人员报告每周护理时长达121小时,这导致他们无法从事有薪工作并出现抑郁情绪。四个主题展现了护理人员的经历:1)个人因素:强烈的家庭责任感,以及应对性别角色问题;2)人际因素:癌症诊断对家庭的影响,社会和性关系的变化;3)社区因素:应对关于护理性质和地点的文化规范;4)卫生系统影响:获取医疗服务的障碍,以及传统医学与生物医学之间的矛盾。这些主题与布朗芬布伦纳的社会生态模型相符,该模型有助于我们构建一个理解非正式护理人员经历的框架。我们的综述凸显了非洲非正式护理人员在文化和社区影响下的多方面角色和经历。护理人员深感责任重大,愿意承担护理角色,但这是以牺牲他们的社会、经济和心理健康为代价的。对护理人员的支持,包括灵活工作时间/护理人员津贴,应纳入全民健康覆盖范围。