The Contextual and Policy Landscape for Caregiver-Mediated Early Intervention in South Africa

Background:

To ensure an intervention developed in one setting can be implemented in a new often dramatically different setting, a thorough understanding of the contextual landscape is essential. In South Africa, a middle-income country, marked by extreme economic and health disparities, little is known about the perspectives of caregivers of young children with ASD on contextual factors they deem important in early ASD intervention. Also, little is known about the perspectives of policymakers regarding which governmental/non-governmental sector and what type of provider would be most feasible and sustainable to deliver an early ASD intervention in South Africa.

Objectives:

Here we set out to investigate caregiver perspectives about contextual factors of importance to them, and policy-maker perspectives about policy and implementation of early interventions for ASD in South Africa.

Methods:

Focus groups and in-depth interviews were carried out with a lower socio-economic, multi-cultural group of 28 caregivers of young children with ASD in Cape Town, South Africa. In addition, eight in-depth interviews with District and Provincial leaders in the Departments of Health, Education, and Social Development and the Non-Profit sector in the Western Cape Province of South Africa were conducted. Data were transcribed and coded for emerging themes using content analysis.

Results:

Eight contextual factors including culture, language, location of treatment, cost of treatment, type of service provider, support, parenting practices, and stigma, emerged as important to caregivers of young children with ASD. Caregivers reported a preference for an affordable, in-home, individualized early ASD intervention, where they had an active voice in shaping treatment goals. Some caregivers were distrustful of community health workers. Challenges associated with ASD-related stigma were identified. Caregivers noted that they felt blamed for their child’s behavior and that their children were often labeled as “naughty”. ASD-related stigma was compounded when caregivers were immigrants or refugees. Policy stakeholders identified a national policy potentially relevant to early ASD intervention, reported the need for collaboration between sectors and highlighted the importance of integrating early ASD intervention into existing platforms of care. Provider capacity-building, increased ASD awareness and stigma reduction emerged as key areas of need. Community health workers, early childhood development workers and parents of children with ASD were identified by policy-makers as non-specialist workers who could deliver an early ASD intervention.

Conclusions:

Large-scale implementation of early ASD intervention in South Africa will likely require careful integration of parent/caregiver preferences with low-cost, sustainable funding approaches, in order to ensure a contextually-appropriate strategy within a collaborative multi-sectorial plan, preferably embedded into existing national policies.