Subjective Experiences of Crises in Family Members of Children with Autism Spectrum Disorders attending a Child and Adolescent Mental Health Clinic at Butabika National Mental Referral Hospital

Abstract

Raising a child with ASD has been described as challenging, demanding, mentally draining, and is associated with development of crises. This study aimed at examining and documenting the subjective experiences of crises among family members of children with ASD spectrum disorders (ASD) attending a child and adolescent Mental Health (CAMH) Clinic in Uganda. This was a cross-sectional study using phenomenological approach and purposive sampling. Semi-structured Interview guide was used to conduct in-depth Key Informant Interviews on each of the family members. The analysis was guided by thematic analysis (Braun & Clarke, 2006). Nineteen (n=19) family members were interviewed from 10 families, majority of whom were females. All family members to children with ASD reported having experienced at least either financial, emotional, health, social, and or behavioral crises at some point in time. These crises are largely described as life threatening situations associated with failed coping and functional impairments. However, family members also reported deriving meanings from crisis moments including finding opportunities to review child’s clinical symptoms, improved social networking and support, a time to self-appraise, and discovering potentials for growth within selves. Participants reported using emergency preparedness plan, identifying and following the routine of crises development, and use of punishment as management strategies. The study recommended further research on ASD in Ugandan families emphasizing improved training in ASD care and support among primary caregivers and general population and yet civil society players and policy makers were encouraged to step up efforts aimed at enacting policies on mental health funding and service delivery especially neurodevelopmental disorders in children.