Quality of life interventions for primary caregivers of children with autism spectrum disorder: a scoping review

Abstract

Background: Raising a child with autism spectrum disorder is associated with high levels of stress. Primary caregivers are a group at risk of mental illness and reduced quality of life. Although interventions for the child with autism spectrum disorder exist, there are few or no interventions focusing on the physical, emotional and psychological needs of the primary caregivers.

Objectives: The aim of this scoping review paper was to identify and describe quality of life interventions offered to primary caregivers of children with autism spectrum disorder. The content, structure, and mechanism of delivery of these interventions, including their contribution to improving the quality of life of these caregivers, are discussed.

Method: A scoping review protocol and methodology was developed and implemented according to a five-step process; namely, identification of the research question including the PICo, identification of suitable studies using selected search strings, selection of studies using PRISMA guidelines, charting of the results, and collation and summarising of the information. Reviewers where active at various stages to maintain the rigour of the study. Twenty one studies were reviewed and eligible for analysis.

Results: The content and trends in structure and mechanism of delivery are described. Three themes emanated from the interventions’ content. The studies were analysed according to quality of life domains addressed in the interventions.

Conclusion: The scoping review highlights current practices informing interventions for primary caregivers of children with autism spectrum disorder and may serve as a guide by practitioners and researchers for developing future evidence-based interventions for this population.