Adapting Caregiver-Delivered Interventions to Low-Resource Settings: Caregiver Descriptions of Joint Activity Routines with Young Children with Autism Spectrum Disorder in South Africa

Background: Coaching caregivers to deliver naturalistic developmental behavioral intervention (NDBI) (Schreibman et al., 2015) strategies to their young child with autism spectrum disorder (ASD) may help address the provider capacity barrier in sub-Saharan Africa (SSA) (Franz et al., 2017; WHO, 2015). Caregiver use of NDBI strategies can promote child joint attention, affective engagement, and language acquisition (Bottema-Beutel, 2016; Siller & Sigman, 2008). However, behavioral and developmental research that forms the theoretical underpinning of NDBIs is overwhelmingly drawn from Western cultural contexts (Nielsen et al., 2017). Therefore our understanding of joint activity routines (JAR), including play and family routines (Bruner, 1974) in which NDBI strategies are embedded, (Mohammadzaheri et al., 2014; Rogers et al., 2012) may have limited applicability outside of Western cultural contexts (Nielsen et al., 2017). Thus, important questions remain on how to adapt NDBIs to be relevant to diverse cultural groups.

Objectives: This study aimed to elicit descriptions of JAR from caregivers of young children with ASD in South Africa, in order to understand whether an NDBI-informed early ASD intervention approach would ‘fit’ within the multicultural, multilingual South African context.

Methods: Participants were recruited from the Western Cape Education Department autism waiting list through convenience sampling. Four focus group discussions were conducted with 22 racially/ethnically diverse caregivers (e.g. mothers, fathers, and grandmothers) of young children with ASD. While the focus group guide covered a range of topics, this study draws data from questions on caregiver-child play, acceptability of caregiver coaching, and South African contextual factors. Data were analyzed through directed content analysis (Hsieh & Shannon, 2005), which used inductive methods to determine salient themes and subthemes.

Results: Caregivers reported engaging in a variety of turn-taking games, teaching cognitive, language, and fine motor skills, and participating in child-directed activities during object-based play. They described active, physical play and an awareness of their child’s emotional state during sensory social play. Caregivers also noted that their children showed increased expressive language and willingness to engage with different play partners during social routines. Caregivers detailed family routines such as child participation in mealtime routines and caregiver-child interactions during bath time. Throughout these interactions (e.g. prayer before meals) they taught their child expressive language, worked to enhance their child’s attention to themselves and other family members, and practiced turn-taking. Caregivers also described limitations related to lack of financial resources, access to specialist services, and social support.

Conclusions: These results suggest that South African caregivers of young children with ASD use JAR to engage and teach their children. This suggests that there exists a degree of ‘fit’ between South African caregiver-child interactions and NDBI caregiver coaching approaches. However, as most of the caregiver-child interaction questions in the focus groups concentrated on play, more information is needed on other family routines which use NDBI strategies (e.g., feeding), both in terms of which family routines occur, and who interacts with the young child with ASD during these routines. These descriptions will help tailor the implementation of caregiver coaching NDBI approaches for low-resource African settings.