Mitigating moral distress by enhancing healthcare workers’ understanding of challenges faced by carers of children with disabilities in low-resource settings in Kenya

Abstract

Background: Little is known about the psychological wellbeing and the potential moral distress faced by female carers of children with disabilities living in low-resource settings in East Africa. In such environments, caregiving often requires resilience and resourcefulness, yet can also increase the vulnerability of caregivers and their children. Objective: The objective of this study is to identify factors affecting female caregivers’ psychological well-being, and to suggest ways healthcare workers can support these care- givers’ psychological well-being to alleviate moral distress. Methods: Employing an intersectional convergent parallel mixed-methods approach, the research explores the factors affecting the psychological wellbeing of caregivers in one urban and one rural low-resource setting in Kenya. Results: The study identifies strengthening and inhibiting factors, across three dimensions, that moderate caregivers’ experiences of moral distress, and puts forward suggestions for healthcare workers on how to support caregivers’ psychological wellbeing. Conclusions: Female carers of children with disabilities in low-resource settings in Kenya face numerous psychological, social and systemic challenges which jeopardize their caregiving, leading to moral distress. Paediatricians and nurses can contribute to enhance the caregivers’ coping-strategies and psychological well-being through simple changes, like explaining a child’s condition in non-technical language. Community health workers can help strengthen the caregivers’ already existing resources by accompanying them in the day-to-day care of their children and by helping them establish self-support groups. Consequently, improved training of healthcare- and community health workers in the field of childhood disability is needed to strengthen health systems, and to support these caregivers and their children. PAPER CONTEXT Main findings: The study identifies three dimensions of strengthening and inhibiting factors that exacerbate or mitigate the experience of moral distress of caregivers of children with disabilities living in low-income areas in Kenya and outlines opportunities for community- based healthcare interventions to support the psychological well-being of these caregivers. Added knowledge: The paper adds to the existing body of knowledge by examining challenges and resources of caregivers of children with disabilities in low-income settings from an intersectional perspective, identifying a complex interplay of structural inequities and lack of systemic support, which exacerbate their multifactorial vulnerabilities, thereby leading to the experience of moral distress. Global health impact for policy and action: The findings help to inform future global health policies and health systems strengthening initiatives in the field of child development and disability