# Systematic review of measures and interventions for caregiver adjustment to child autism diagnosis

## TL;DR

This paper reviews how caregivers adjust to their child's autism diagnosis and finds many ways to measure adjustment, with some interventions showing promise.

## Contribution

The paper systematically reviews definitions, measures, and interventions for caregiver adjustment to autism diagnosis, highlighting gaps and needs for future research.

## Key findings

- The review identified 42 measures and eight interventions for caregiver adjustment, with four interventions showing significant improvement.
- There is a lack of consensus on defining and measuring caregiver adjustment, suggesting a need for standardized approaches.
- The study highlights the need for more inclusion of fathers, autistic caregivers, and caregivers of autistic adults in future research.

## Abstract

Caregivers’ adjustment to their child’s autism diagnosis has important implications for child and caregiver outcomes. However, there has been substantial variability in definitions and measurement of caregiver adjustment to autism diagnosis. This study reports a systematic review of measures of caregivers’ adjustment to their child’s autism diagnosis, and the effectiveness of intervention for caregiver adjustment. A systematic review (PROSPERO CRD42023463196) was conducted according to PRISMA guidelines. Adjustment was defined as caregivers’ psychological response to their child’s autism diagnosis. Database searches yielded 6345 unique articles, which were title and abstract screened. Full text screening was completed for 428 articles. Mixed Methods Appraisal Tool (MMAT) was used to assess study quality. The review identified 78 articles, which included 42 measures of adjustment and eight interventions targeting adjustment, four of which produced significant improvement in adjustment. Study quality was mostly adequate. The review identified a need for consensus on defining and measuring caregiver adjustment. The review also identified the need for fathers, caregivers who are autistic, and caregivers of adults to be more included in adjustment research. There is preliminary evidence for interventions supporting adjustment, but further research is needed.

The process of understanding and accepting a child’s diagnosis of autism, known as adjustment, is important for the ongoing well-being of autistic people and their caregivers. The way that researchers have defined and measured adjustment has not been consistent. This article reports a systematic review aiming to identify how adjustment has been defined and measured in published research. The review also aimed to identify interventions that have targeted caregiver adjustment and see whether they are effective. The review identified 78 articles, which included 42 measures of adjustment and eight interventions. Four of the interventions demonstrated significant benefits for adjustment. There is a need for further research to develop a consensus regarding definition and measurement of adjustment, so that adjustment can be measured more consistently across studies. There is also a need for research looking at whether existing interventions for autism have benefits for caregiver adjustment, and to conduct more rigorous evaluations of any new adjustment interventions that are developed.