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- Title
'We wait and we wait'—caregiver perspectives on autism spectrum disorder services in the Western Cape Province of South Africa.
- Authors
Pillay, Sarosha; Duncan, Madeleine; de Vries, Petrus J.
- Abstract
Introduction: Caregivers of children with autism face significant challenges in navigating health, education and other systems of care to ensure appropriate services for their children. In South Africa, for example, many children with autism are reported to be out of schools and waiting long periods for specialist school placements thus adding to the burden of care for caregivers and raising many questions about equity, diversity and inclusion. Methods: Here we performed a qualitative study using focus groups to collect data on the perspectives of caregivers of children with autism waiting for school placement in the Western Cape Province of South Africa. We asked families about their experiences of current autism services and for suggestions to improve service delivery. Results: The main theme that emerged was 'We wait and we wait'. Caregivers expressed high levels of frustration with existing autism educational and other services. Perspectives about services were captured under three categories. The first category, 'The costs of waiting' describes the socioemotional, financial and time costs associated with having a child with autism wait for educational services. The second category 'Barriers while waiting' describes the attitudinal, structural, process and communication barriers experienced by caregivers while seeking services for their children. The final category 'Expecting action' describes attitudinal, service and policy expectations that caregivers felt could improve service delivery. Caregivers provided 10 recommendations for autism service improvements. Conclusion: Caregivers of children with autism waiting for educational services in the Western Cape Province of South Africa expressed dissatisfaction with existing services. Efforts to find solutions to providing services and support to children with autism waiting for educational services and their caregivers should be prioritized.
- Subjects
SOUTH Africa; FAMILIES &; psychology; QUALITATIVE research; FOCUS groups; AUTISM; HEALTH policy; MEDICAL care; JUDGMENT sampling; FAMILY attitudes; EXPERIENCE; THEMATIC analysis; BURDEN of care; ATTITUDES toward mental illness; SCHOOL admission; SPECIAL education schools; SPECIAL education; QUALITY assurance; PSYCHOLOGY of caregivers; CAREGIVER attitudes
- Publication
Child & Adolescent Mental Health, 2024, Vol 29, Issue 2, p145
- ISSN
1475-357X
- Publication type
Article
- DOI
10.1111/camh.12704