In low-income settings with limited social protection supports, by necessity, families are a key resource for care and support. Paradoxically, the quality of family care for people living with Severe Mental Illness (PLSMI) has been linked to support for recovery, hospital overstay and preventable hospital readmissions. This study explored the care experiences of family members of PLSMI with patients at the national mental hospital in Kampala, Uganda, a low income country. This study was undertaken to inform the development of YouBelongHome (YBH), a community mental health intervention implemented by YouBelong Uganda (YBU), a registered NGO in Uganda. Qualitative data was analysed from 10 focus groups with carers of ready to discharge patients on convalescent wards in Butabika National Referral Mental Hospital (BNRMH), Kampala. This is a subset of data from a mixed methods baseline study for YouBelong Uganda, undertaken in 2017 to explore hospital readmissions and community supports for PLSMI from the Wakiso and Kampala districts, Uganda. Three interrelated themes emerge in the qualitative analysis: a range of direct, practical care provided by the caregiver of the PLSMI, emotional family dynamics, and the social and cultural context of care. The family care giving role is multidimensional, challenging, and changing. It includes protection of the PLSMI from harm and abuse, in the context of stigma and discrimination, and challenging behaviours that may result from poor access to and use of evidence-based medicines. There is reliance on traditional healers and faith healers reflecting alternative belief systems and health seeking behaviour rather than medicalised care. Transport to attend health facilities impedes access to help outside the family care system. Underpinning these experiences is the impact of low economic resources. Family support can be a key resource and an active agent in mental health recovery for PLSMI in Uganda. Implementing practical family-oriented mental health interventions necessitates a culturally aware practice. This should be based in understandings of dynamic family relationships, cultural understanding of severe mental illness that places it in a spiritual context, different family forms, caregiving practices and challenges as well as community attitudes. In the Ugandan context, limited (mental) health system infrastructure and access to medications and service access impediments, such as economic and transport barriers, accentuate these complexities.

中文翻译：

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严重精神疾病患者的家庭护理：乌干达护理人员的经验和观点

在社会保护支持有限的低收入环境中，家庭必不可少是获得照料和支持的重要资源。矛盾的是，为重度精神疾病患者提供的家庭护理质量已与康复，住院超期和可预防的住院再入院的支持联系在一起。这项研究探讨了低收入国家乌干达坎帕拉的国家精神病医院的PLSMI家庭成员对患者的护理经验。进行这项研究的目的是为YouBelongHome（YBH）的发展提供信息，该社区是由乌干达注册的非政府组织YouBelong Uganda（YBU）实施的一项社区精神卫生干预措施。在坎帕拉的布塔比卡国家转诊精神病医院（BNRMH），对10个焦点小组的定性数据进行了分析，这些护理人员准备好在康复病房中出院的患者。这是2017年针对YouBelong乌干达进行的混合方法基线研究的数据的子集，该研究旨在探索乌干达Wakiso和Kampala地区的PLSMI的住院再入院和社区支持。定性分析中出现了三个相互关联的主题：由PLSMI的照护者提供的一系列直接，实际的照护，情感家庭动态以及照护的社会和文化背景。提供家庭护理的作用是多维的，具有挑战性的和不断变化的。它包括在污名和歧视的背景下保护PLSMI免受伤害和滥用，以及由于难以获得和使用循证医学而引起的具有挑战性的行为。依靠传统治疗师和信仰治疗师来反映替代的信仰体系和寻求健康的行为，而不是医疗护理。前往医疗机构的交通阻碍了在家庭护理系统之外获得帮助的机会。这些经验的基础是经济资源不足的影响。家庭支持可以成为乌干达PLSMI精神健康恢复的重要资源和积极手段。实施面向家庭的实用心理健康干预措施需要有文化意识的实践。这应基于对动态家庭关系的理解，对严重精神疾病的文化理解（将其置于精神环境中），不同的家庭形式，护理习惯和挑战以及社区态度。在乌干达的情况下，有限的（精神）卫生系统基础设施以及获得药品和服务的障碍（例如经济和运输障碍）加剧了这些复杂性。