Caregiving Challenges, Service Needs, Impact and Future Care for Autism in Uganda

The purpose of this study was to provide an in-depth understanding of the challenges Ugandan parents of children with autism face. Caring for a child with autism poses unique challenges to families and deserves tailor-made remedies. Autism is understudied in Uganda and Africa. This qualitative study reports on results from focus group discussions with six parents of children with autism spectrum disorder (ASD) in Uganda. Using thematic analysis, six themes were identified: Social Stigma, Lack of Support, Financial Burden, Children Need Basic Living Skills, Physical Discipline, and Resilience. Parents reported lack of support in multiple services addressing many life domains across the lifespan while continuously fighting for social stigma. The lack of support reverted parents to using physical discipline to manage behaviours, though parents also showed tenacity in the caregiving process. Parents require services from a multi-disciplinary team that caters to children and youth with ASD as well as their parental needs.