Characteristics and roles of informal carers.

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.非洲癌症患病率持续攀升，约80%的癌症患者确诊时已处于晚期阶段。高额的自付医疗成本与不堪重负的医疗系统，使得癌症护理高度依赖非正式照护者（informal carers）。本研究旨在探讨非正式照护者的角色与经历，包括癌症护理对个体及社区的影响，以及可为照护者提供的支持资源。本研究遵循PRISMA报告指南开展系统综述，采用批判性解释合成法（critical interpretative synthesis）提炼核心主题，并构建非正式照护者经历分析框架。研究团队检索了9个数据库，筛选出8123篇文献，最终纳入31项相关研究。其中绝大多数研究来自撒哈拉以南非洲（29/31，94%），尤以乌干达的研究数量最多（9项，占比29%）。照护者多为30~40岁的女性，身份多为兄弟姐妹、配偶或子女。照护职责涵盖护理协调、筹款与情感支持等多个方面。照护工作耗时极长，部分照护者每周照护时长可达121小时，因此无法从事有偿工作，甚至出现抑郁症状。本研究提炼出四项照护者经历主题：1）个体内在因素：强烈的家庭义务感与对固有性别角色的挣扎；2）人际互动因素：癌症诊断对家庭结构的冲击、社交与性关系的变化；3）社区环境因素：需遵循围绕护理性质与地点的文化规范；4）医疗体系影响因素：获取医疗服务的障碍，以及传统医学与生物医学间的张力。上述主题与布朗芬布伦纳（Bronfenbrenner）的社会生态模型相契合，该模型为我们构建理解非正式照护者经历的分析框架提供了支撑。本综述揭示了非洲非正式照护者所承担的多元角色与经历，凸显了其在文化与社区背景下的照护处境。照护者背负着强烈的义务感并自愿承担照护职责，但却以自身的社交、经济与心理健康为代价。针对照护者的支持措施，包括弹性工作制与照护津贴，应纳入全民健康覆盖体系之中。