Exploring caregivers’ experiences when seeking mental health care services for their children with autism spectrum disorder: A qualitative study from South Africa

Abstract

Background: The increasing prevalence of autism spectrum disorder (ASD) highlights the importance of understanding caregivers’ experiences in accessing mental healthcare for their children, particularly given the demanding nature of supporting children with ASD in resource-constrained settings.
Aim: This study aimed to explore the experiences of caregivers of children with ASD when accessing mental healthcare services in South Africa.
Setting: This qualitative study was conducted at the Child and Adolescent Psychiatric Unit at Weskoppies Hospital, a tertiary-level hospital in Pretoria West, Gauteng province, South Africa.
Methods: This qualitative case study purposively sampled 15 caregivers of children with ASD at a tertiary psychiatric facility in South Africa. Data were gathered through in-depth interviews and analysed using a Grounded Theory-informed thematic analysis approach.
Results: Five main themes emerged: (1) challenges in accessing mental health care services, (2) delays in screening and early diagnosis, (3) limited ongoing education and knowledge-sharing, (4) the need for emotional support and counselling, and (5) facilitating referrals to specialised schools and allied health care services.
Conclusion: The study identified significant barriers to mental health service utilisation, underscoring the urgent need for improved service accessibility, caregiver support and increased public awareness.
Contribution: The findings advocate for strengthened mental healthcare access and targeted caregiver support for families of children with ASD in South Africa.