Parent Education and Training for autism spectrum disorders: Scoping the evidence

Abstract

Empowering families of children with autism spectrum disorder through education and training is best practice. A wide range of Parent Education and Training programmes are delivered around the globe, but there is limited knowledge about the characteristics of these programmes, or about the research methods and outcomes used to evaluate them, particularly in countries outside the United States. We, therefore, performed a scoping review of all peer-reviewed Parent Education and Training publications outside the United States. A search was conducted between March and May 2017. Four reviewers extracted data and performed a mixed-methods quality appraisal of publications. Thirty-seven publications representing 32 unique programmes were identified. Publications described a highly diverse range of Parent Education and Training programmes across 20 countries and all continents except South America. The majority were group-based, but varied significantly in goals, modalities and duration. The majority of studies (86.4%) reported positive outcomes in relation to the core study objectives and only two studies reported some negative findings. Quality appraisal rated only 27% of studies to have met all the methodological quality criteria. Implementation factors such as manualisation, fidelity and cost were commented on infrequently. In spite of the clear need for Parent Education and Training programmes, our findings show that the research evidence-base in autism spectrum disorder outside the United States is relatively small, non-representative and in need of methodological quality improvements.

A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting

“…The focus on families and communities as well as the need for education and support to families has been highlighted in the ASD literature (Bearss et al, 2015; Gillespie-Lynch & Brezis, 2017) and reinforces the need for support and psychoeducation directly after diagnosis (Dawson-Squibb et al, 2020). Various definitions have been used to describe the range of parent/carer-related interventions for ASD.…”

“…didactic, role-play, discussions) in a context where parents/carers and trained facilitators are the direct participants. As noted, the focus of PET is on knowledge transfer to parents/carers and they are the main beneficiaries rather than the emphasis being on the parent–child dyad (Dawson-Squibb et al, 2019; Dawson-Squibb et al, 2020).…”

“…A wide range of PET programmes are used across the globe (see Dawson-Squibb et al, 2020, for a recent review). In a scoping review of one such widely implemented PET programme, the EarlyBird/EarlyBird Plus (EB/EBP) programme developed in the United Kingdom, the authors were able to identify only low level of evidence for the outcomes of the programme and found that little research to date had been performed on implementation-related factors of the programme, such as expansion, practicality, accessibility and cultural appropriateness (Dawson-Squibb et al, 2019).…”

“…This further supports that argument that more research on parent-focused programmes is required. A broader scoping review of all PET programmes conducted outside the United States to date (Dawson-Squibb et al, 2020) identified 37 publications on 34 unique PET programmes. Findings were very similar to the EB/EBP results, with only five randomised controlled trials ever performed and limited implementation science investigation of these PET programmes (Dawson-Squibb et al, 2020).…”

“…A broader scoping review of all PET programmes conducted outside the United States to date (Dawson-Squibb et al, 2020) identified 37 publications on 34 unique PET programmes. Findings were very similar to the EB/EBP results, with only five randomised controlled trials ever performed and limited implementation science investigation of these PET programmes (Dawson-Squibb et al, 2020). The authors commented on the absence of any consensus evaluation tools to make direct comparisons of programmes in order to evaluate or select a suitable PET programme for a specific context.…”