Caregiver Descriptions of Joint Activity Routines and Perceptions of Acceptability of a Caregiver Coaching Approach to Early Autism Spectrum Disorder Intervention in South Africa

Background: Early detection and early intervention for autism spectrum disorder (ASD) is critical because it can reduce the severity of core ASD symptoms, and result in significant long-term improvements in language acquisition, social skills, cognitive abilities, and adaptive behaviors. Involving caregivers in the delivery of early ASD intervention is becoming increasingly important, particularly in low-resource settings, due to limited access to specialist ASD services. Currently, there is no published research on early ASD intervention in South Africa or sub-Saharan Africa (SSA). In addition, there are no published descriptions of caregiver-child joint activity routines, in which early intervention techniques can be embedded, or perceptions of the acceptability of a caregiver coaching approach.

Study Aims: This study aimed to elicit qualitative descriptions of caregiver-child joint activity routines in order to understand how the Early Start Denver Model (ESDM), an evidence-based early ASD intervention, could fit in a low resource South African setting. It also aimed to gauge the acceptability of a caregiver coaching intervention from South African caregivers of young children with ASD who received two taster sessions of caregiver coaching.

Methods: Participants were recruited from the Western Cape Education Department autism waiting list through convenience sampling. Four focus group discussions were conducted with 22 caregivers of young children with ASD, which gathered data on caregiver-child joint activity routines. Four additional families were recruited to participate in two caregiver coaching sessions each. Four in-depth interviews were subsequently conducted with the six caregivers from these families, which gathered data on joint activity routines and acceptability of a caregiver coaching intervention. Data were analyzed through a qualitative content analysis approach, which used a combination of inductive and deductive methods to determine the salient themes and subthemes within the data.

Results: Caregiver descriptions of joint activity routines aligned with ESDM themes of object-based play, sensory social routines, and family routines. In object-based play caregivers reported engaging in turn-taking with their children, teaching skills across developmental domains, embracing child-directed activities, and managing challenges related to play in resource limited settings. In sensory social routines, caregivers described physical play, an awareness of the child’s affect and engagement, increased child expressive communication, and willingness of the child to engage with different play partners. In family routines, caregivers reported child participation in meals and bath time. Caregivers reported that a caregiver coaching approach was acceptable and that they had acquired a variety of skills, including strategies to enhance their child’s social communication. Caregivers preferred receiving coaching in their homes as opposed to in a clinic setting; however, limitations in physical space and financial resources were important considerations.

Conclusion: Training caregiver coaches and non-specialist workers narrows the treatment gap by providing access to children in need of early ASD intervention. This is essential, because of the scarcity of psychologists and psychiatrists working in mental health in low and middle-income countries (LMIC). Descriptions from South African caregivers of caregiver-child joint activity routines and acceptability of the caregiver coaching approach contextualize the caregiver coaching intervention. These data will inform the adaptation and piloting of an early ASD intervention within a low-resource South African setting.