Navigating the healthcare systems for primary caregivers of children with developmental disabilities: experiences from a rural setting in Kenya

Early Abstract:

Background: Families with children with developmental disabilities in sub-Saharan Africa (SSA) often face significant challenges in accessing healthcare services and are more than three times more likely to encounter difficulties in obtaining necessary care. Despite global advancements in disability-related policies, caregivers in low-resource settings continue to face obstacles when navigating the healthcare system. This article examines how primary caregivers of children with developmental disabilities navigate healthcare systems in rural Kenya.
Methods: A phenomenological qualitative approach was used to explore the lived experiences of 19 primary caregivers of children with developmental disabilities in rural Kenya through in-depth interviews. Data were analyzed using inductive thematic analysis. The social model of disability studies guided the analysis.
Findings: Four themes emerged: Caregivers’ Explanatory Models of Disability and Their Influence on Care-Seeking, Structural Barriers in Healthcare Access and Quality, The Multidimensional Burden of Caregiving (Emotional, Physical, and Economic), and Community and Institutional Support Mechanisms. The article reveals that informal support systems—including extended family, church, and community members—play a critical role in sustaining caregivers of children with developmental disabilities in Siaya County, offering practical assistance and emotional resilience. However, persistent gender disparities in caregiving responsibilities and systemic gaps in healthcare guidance exacerbate caregivers' burdens.
Conclusion: The study highlights how caregivers endure care responsibilities in a highly constrained context supported by community networks, while revealing critical gaps in gender equity and healthcare guidance. It underscores the need for targeted, community-based interventions that strengthen informal support systems and address structural barriers to inclusive care for children with developmental disabilities.
Keywords: caregivers, children, developmental disabilities, healthcare, Kenya