“I bring her up with love:” Perspectives of caregivers of children with neurodevelopmental delays in western Kenya

Abstract

This study aims to understand the challenges and perspectives of caregivers with neurodevelopmental delays (NDD) in rural Kenya. Methods: Semi-structured interviews and the Affiliate Stigma Scale were administered to the primary caregivers of children with NDDs recruited from the communities near Eldoret, Kenya. Constant comparison and triangulation methods were used to inductively develop relevant themes and concepts. Results: Sixteen caregivers participated. Challenges, which included hardships related to safety and supervision, challenging emotions and financial difficulties, were compounded by a lack of social support and community stigma towards these children. However, caregivers still felt deep love for their children, desired acceptance from the community and found sources of strength from faith and religious institutions. Conclusion: The study uncovered crucial insights into the perspectives of caregivers within this population and revealed a paucity of disability awareness and understanding within the community, possibly informing future programmes and intervention policies.