A Comparative Feasibility Study of Two Parent Education & Training (PET) Programmes in a Low-Resource South African Setting

Background:

In spite of the need for post-diagnostic parent/carer education and training (PET) in ASD, the research evidence-base is relatively small, particularly in Low-and-Middle-Income Countries (LMIC). A wide range of programmes exist, but with no consensus on criteria to evaluate such programmes for implementation in culturally diverse settings.

Objectives:

Here we performed a comparative feasibility study of two PET programmes in a low-resource setting. EarlyBird/EarlyBird Plus (EB/EBP), a UK-developed, widely used and highly manualised 12-week programme was compared to Autism Cares, a locally-developed 5-day programme. Our two aims were first, to examine acceptability, adaptation and perform limited efficacy testing of the programmes; second, to use a newly-generated multi-stakeholder ASD PET Evaluation Framework to compare them.

Methods:

A mixed-method, quasi-experimental design was used to collect pre, post and 3-month follow-up data. Measures included standardised and custom-designed quantitative outcome measures (e.g. Parenting Stress Index, Autism Treatment Evaluation Checklist, Parent Involvement Questionnaire, and Parent programme satisfaction measure) and qualitative semi-structured interview data.

Results:

Eighteen parents participated in the EarlyBird/EarlyBird Plus programmes, and eleven in the Autism Cares programme. Parent/carer and child characteristics were very similar. In particular, at least 30% of families earned <$300 per month. Strong parental acceptability for both programmes was found along with the need for some adaptations to the local context. Limited efficacy testing showed positive changes for parental stress, knowledge of ASD and changes in child, more so for EB/EBP than AC. The multi-stakeholder panel acknowledged strengths and weaknesses of both programmes, but judged EB/EBP as most suitable for next-step research citing factors relating to implementation including scalability and sustainability.

Conclusions:

Our findings contributed to the limited evidence-base for ASD PET in low-resource environments but highlighted the need for global collaboration to identify consensus measures to include in future research. The ASD PET Evaluation Framework provided a useful structure for comparison of the two programmes, but emphasised the need to align measures with the evaluation criteria. Overall, the study underlined the need for the evidence-base of ASD PET programmes to include processes & procedures, and examination of the implementation landscape, in addition to outcomes.