Care giving practices among parents raising children with Autism Spectrum Disorder in Kampala City, Uganda

Abstract

This study examined the caregiving practices of parents raising children with autism spectrum disorder in Kampala city, Uganda. It was guided by three objectives, namely: (i) to describe parents‘ understanding of ASD in Kampala city; (ii) to explore the nature of caregiving practices by parents of children with ASD. (iii) to identify strategies employed by parents to support children with ASD in Kampala City. The researcher adopted a qualitative approach using a phenomenological research design that explores, describes, and interprets the lived experiences of parents caring for autistic children. This aimed to uncover experiences, perceptions, and interpretations of care among these parents. The findings of the study revealed that parents understanding of ASD was defined by physical, mental, and communication behaviors varying from child to child, which influenced the nature of care given. (ii) Whereas a diverse range of care existed in Kampala district, caregiving practices are largely dependent on the different behaviors exhibited by autistic children, and the majority of parents provide physical care because it is affordable and available compared to medical and educational care, which have financial implications; and (iii) most of the strategies were home-based; they were developed by parents at home without any other intervention from outside. Some strategies included spiritual guidance and counseling plus informal education support. The study concluded that care is hectic and inadequate because it is mostly physical and financially straining, which consequently impacts the lives of children negatively. Parents understanding of ASD is not clear, but rather they define it by behaviors exhibited by their children. These behaviors vary from child to child. The different strategies being employed by parents to support children‘s well-being do not seem to contribute adequately towards the improvement of the children‘s welfare. The study recommended increasing public awareness and education by government, local leaders, medical workers, NGOs, religious leaders, and other stakeholders. Understanding a condition helps take appropriate ways to address it. According to UNICEF 2022, understanding care and support is one of the solutions that can drastically help children with autism live a happy life. Parents should be trained in proper care approaches like counseling to manage the psychosocial challenges of their children and themselves. This could be through using trained medical personnel, local leaders in the community, and others.