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

ABSTRACT

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.

KEYWORDS:

• Autism
• challenges
• Ugandan parents
• service needs

Key Messages

• Uganda parents of children with ASD lack support, are socially stigmatised and financially burdened from paying for several rehabilitation programs. Their children with ASD need basic living skills.

• Parents at times utilise physical discipline to teach appropriate behaviour to their children. Resilience is important for parents of children with autism, however, proper training on how to teach appropriate behaviour is needed.

• There is a need for community sensitisation on autism to raise awareness.

• Special education programs (including boarding schools) and other services may be successful for children with ASD yet are difficult to access.

Acknowledgments

We thank the administration at the College of Education, Michigan State University for making this study possible through a fellowship. This study would not have been possible without funding and for that, we are grateful. However, the views herein are solely for the study authors. We are grateful to all the study participants, employees, and administrators at the Uganda children development center where this study occurred.

Disclosure Statement

No potential conflict of interest was reported by the author(s).