Interventions for Primary Caregivers of Children with Autism Spectrum Disorder: A cross-sectional study of current practices of stakeholders in South Africa

Abstract

Background: Primary caregivers of children with autism spectrum disorder (ASD) face many challenges potentially impacting 
their mental health and well-being. Given their role in childcare, it becomes essential that primary caregivers be recognised as 
health care users who should receive interventions towards improved health, well-being and quality of life (QOL). The study 
aimed to describe the content, structure and mechanism of delivery of interventions offered to primary caregivers of children with ASD, with specific reference to QOL, in South Africa.
Method: A cross-sectional survey design was used to establish the interventions provided to primary caregivers as reported by 
health are and non-health care professionals who deliver interventions to children with ASD and their families, using an online 
questionnaire. Snowball sampling was implemented to access a sample of 61 respondents. Demographic data were analysed 
using descriptive statistics. Details of specific content of interventions were analysed according to identified intervention goals. 
Closed questions (binary and intensity scales) were analysed using frequencies and means and open-ended questions were thematically analysed with deductive reasoning using QOL domains as identified in relevant literature.
Results: Demographics of respondents are presented. Content of intervention included goals towards, awareness about ASD,
interventions beneficial for the child with ASD and interventions beneficial for the primary caregiver. The structure and 
mechanism of delivery of interventions are described. Three QOL domains, development and activity, as well as social and 
emotional wellbeing, were more commonly targeted in interventions. Physical and material wellbeing were targeted to a lesser extent.
Conclusion: The QOL elements that are embedded in the described interventions described, highlight both strengths and 
limitations within current practices. Additionally, it is noted that interventions appear to primarily cater for the needs of the 
child, with gaps in catering directly for the needs of the primary caregiver. The mental health and wellbeing of the primary 
caregive is essential for the child with ASD to develop and achieve their optimal potential. Therefore inclusion of the social, emotional and health needs of the primary caregiver need to be overt with specific outcomes towards improved QOL within interventions.

Key words: primary care givers, quality of life, autism, spectrum disorders, interventions