Sociodemographic and clinical indicators associated with quality of life among parents of autistic children

Abstract

Background:Evidence suggests that parents/carers of autistic children have lower subjective physical and mental health which in turn can affect their overall quality of life (QoL). The aim of this study was to determine the relationship between behavioural and emotional profile of autistic preschool children, parental stress, and QoL using a sociodemographic lens. Methods: A secondary analysis of the data collected from parents of autistic children from six Autism Specific Early Learning and Care Centres (ASELCCs) across six states in Australia. The standardised Quality of Life in Autism scale (QoLA) scale was used as the primary outcome to ascertain the QoL of parents/caregivers. Primary exposure included child’s autism traits as well as cognitive, adaptive, and behavioural profile measured using the Autism Diagnostic Observation Schedule-second edition (ADOS-2), Social Communication Questionnaire (SCQ), Repetitive Behaviours Scale–Revised (RBS-R), Vineland Adaptive Behaviour Scales (VABS), Child Behaviour Checklist (CBCL), and Mullen Scales of Early Learning (MSEL) whereas parental stress was assessed using Parent Stress Index-4 Short Form (PSI-4-SF). Several key child-specific (child’s age, gender, and other medical conditions) as well as parent-specific (parent’s age, multicultural status, education, occupation, and income) factors were also included. Multivariable linear regression analyses were used to determine the significant predictors associated with parental QoL whilst adjusting for key sociodemographic factors. Results: Among a sample of 518 participants, the mean (SD) QoLA Part A score was 95.9 (19.9) and mean (SD) QoLA Part B score was 69.8 (21.1). Findings of the regression analyses showed that autism traits as reported by parents (higher SCQ scores) and higher parental stress levels were negatively associated with the parental QoL (Part A) whereas high income had a positive effect on QoL. In terms of parental perceptions of children’s autism-specific difficulties (QoLA Part B), we found that higher internalising and externalising behaviours (CBCL) including repetitive behaviours (RBS-R) are more impactful. Conclusion: Findings indicate that a child’s level of autism specific traits as reported by parents have an impact on parental QoL. Hence, targeted supports in these areas for families could be expected to have benefits not only for the child’s outcomes but also for parental QoL.