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Adapting Caregiver-Mediated Early Autism Interventions in South Africa: Contextual Factors and Acceptability of Caregiver Involvement
A significant global challenge is to develop scalable, feasible, early interventions for ASD that can be implemented in diverse and low resource communities. Caregiver-mediated early ASD interventions could provide the necessary avenue to address the capacity barrier globally. However, important questions remain about contextual factors of importance in intervention adaptation and the acceptability of intervention techniques that utilize caregivers in a service delivery model.
Objectives:
This qualitative, South African study explored: (1) contextual factors relevant to the adaptation of a caregiver-mediated early ASD intervention, and (2) the acceptability of utilizing caregivers in the delivery of an early ASD intervention from the perspective of caregivers and providers.
Methods:
Focus groups and in-depth interviews were conducted in Cape Town, South Africa, with 28 caregivers of children with ASD and 12 local autism service providers. The caregivers included mothers (n=20), fathers (n=5), and grandmothers (n=3) of children with ASD who were under the age of 7 years. The local ASD service providers, who worked in the public health (n=7) or education (n=5) sector, included psychologists, educators, speech therapists, occupational therapists, and a parent advocate. This sample included participants from a number of African countries, representing the cultural diversity and typical migration patterns seen in South Africa. Participants spoke in English, isiZulu, isiXhosa, and Afrikaans in the interviews and focus groups. All data was translated, transcribed, and then coded for emerging themes using the NVivo qualitative data analysis software package.
Results:
Contextual factors reported by both caregivers and service providers included: (1) the importance of matching provider to family by spoken language, (2) cultural sensitivity to traditional parenting practices and family customs, (3) affordability of treatment, (4) the importance of immediate and extended family acceptance and support, and (5) the effects of community-based stigma. Specific caregiver contextual factors included: (1) the importance of religion and faith as a form of support and (2) feeling financially exploited by ASD service providers. Specific provider contextual factors that emerged included: (1) lack of parental psychoeducation, and (2) difficulty contacting or communicating with caregivers. Caregivers and service providers reported acceptability of the concept of training caregivers to deliver an early ASD intervention. Caregivers noted that they would experience this education and training as empowering and reported interaction styles with their children which suggest they may be able to be trained to implement early ASD interventions. Specifically, caregivers: (1) were aware of their child’s affective state, (2) regularly engaged in child-directed play activities that included both object-based play and sensory-social routines, and (3) utilized locally available, child-selected play materials.
Conclusions:
Common themes around important contextual factors and acceptability of utilizing caregivers in the service delivery model emerged from a culturally and geographically diverse group of participants. This study had the unintended positive consequence of providing a shared platform for parents and caregivers to seek support and gather information from one another, highlighting the paucity of available social support in this environment.