Abstract
Previous research has examined several parental, child-related, and contextual factors associated with parental quality of life (QoL) among parents with a child or an adolescent with autism spectrum disorders (ASD); however, no systematic review has examined the relationship between parental QoL and parental involvement in intervention. To fill this gap, a systematic review was conducted using four electronic databases and checked reference lists of retrieved studies. Records were included in the systematic review if they presented original data, assessed parental QoL, and involvement in intervention for children or adolescents with ASD, were published in peer-reviewed journals between 2000 and 2020, and were written in English. Among the 96 screened full-texts, 17 articles met the eligibility criteria. The selected studies included over 2000 parents of children or adolescents with ASD. Three categories of parental involvement (i.e., none, indirect, direct) were identified, which varied across studies, although most had direct parental involvement. The results from this review show that increased parental involvement in the intervention for children or adolescents with ASD may be one way to promote their QoL. However, further research specifically focused on parental involvement during the intervention for children and adolescents with ASD is warranted.
Highlights
Autism spectrum disorder (ASD) is a pervasive neurodevelopmental disorder characterised by persistent atypicalities in social communication and social interactions across different domains, together with restricted, repetitive, stereotyped patterns of behaviour, interest, or activities [1]
The results indicated an overall low level of quality of life (QoL) among parents who have been indirectly involved in an intervention for their child or adolescent with autism spectrum disorders (ASD)
Parental involvement in intervention for children or adolescents with ASD is a topic that is attracting increasing attention, as evidenced by the fact that parents were directly involved in interventions in most of the studies selected in this systematic review
Summary
Autism spectrum disorder (ASD) is a pervasive neurodevelopmental disorder characterised by persistent atypicalities in social communication and social interactions across different domains, together with restricted, repetitive, stereotyped patterns of behaviour, interest, or activities [1]. Can significantly affect and challenge the entire family system [7], with a mostly negative impact on the quality of life (QoL) and on the relationship quality of closer family members such as siblings [8,9] and parents [10,11]. Most of the research on interventions for ASD has so far been focused on child outcomes, disregarding the impact on parents [14]. This is surprising, given the increasing parental involvement in activities of children and adolescents with ASD [16,17] including the intervention process [18].
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