Emotional and physical challenges faced by parents and caregivers of children with autism spectrum disorder

Abstract

Autism spectrum disorder (ASD) has a significant impact on the broader family, with parents and other carers experiencing high levels of parenting stress, caregiver burden and psychological distress. A body of research has explored emotional and practical/physical impacts of ASD caregiving, but the degree to which these outcomes co-occur across child, carer and contextual factors has not been synthesised within recent quantitative evidence.

This systematic review aimed to synthesise quantitative empirical studies published mainly from 2015 onwards for exploring emotional and physical/practical caregiving outcomes in ASD caregiving. Methods: PsycINFO, PubMed, Scopus, Web of Science, CINAHL and ERIC were searched using pre-defined eligibility criteria. One hundred and fourteen records were screened and twenty studies were included in the main synthesis and additional sources were used for contextual and measurement purposes, but were not counted as included studies. Data were extracted and synthesised using structured narrative comparison, with consideration of methodological quality and contextual moderators. Across included studies, child clinical characteristics and caregiving context were commonly associated with variation in carer outcomes, including psychological distress and indicators of practical/physical burden (e.g. time demands and fatigue where measured). Carer characteristics (including gender, socioeconomic circumstances, health status, resilience and social support) were frequently explored as correlates or moderators. Intervention studies most commonly reported modest improvements in carer distress, while practical/physical caregiving demands were less consistently targeted where structural caregiving responsibilities remained unchanged. Methodological limitations commonly identified included the use of cross-sectional designs, dominance of self-report measures and poor representation of fathers and non-Western samples.

This review emphasizes the multidimensional and context-dependent nature of ASD caregiving outcomes and highlights key priorities for enhancing the rigour of future quantitative research in this field.