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
care 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 caregiver 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