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An Implementation Science Approach to Parent Education Training – Generation of an Evaluation Framework and Comparison of Two Programmes in a South African Setting
Parent Education Training (PET) is increasingly considered an important component of early treatment for Autism Spectrum Disorders (ASD). It covers a range of modalities and different PET programmes employ different approaches and goals. Ensuring these are contextually appropriate to stakeholders, including parents, is critical for effectiveness, sustainability and future scale-up. While there is growing research in this area, little comparison of different PET programmes has been attempted. Particularly in Low- and Middle Income Countries (LMIC), where financial restrictions are pervasive, selecting programmes that meet the needs of relevant stakeholders is paramount.
Objectives:
We set out to generate an evaluation framework for parent education training using a stakeholder participatory strategy, and then ran two different programmes for comparison using the agreed evaluation framework.
Methods:
The study used a consecutive, mixed-methods design. Given the absence of any universally-agreed tools to compare PET programmes, an evaluation framework was generated by a panel of 13 stakeholders. Stakeholders were recruited via consensus sampling and had knowledge and experience in the area of ASD while working in LMIC. Consensus discussion in groups was used to generate a final evaluation framework.
Two PET programmes were selected for head-to-head feasibility evaluation. Autism Cares is a locally-developed 5-day outpatient programme; EarlyBird is a well-established, manualised 12-week programme developed by the U.K.'s National Autistic Society. With ethics approvals, families were recruited to participate in a pilot feasibility study via a local not-for-profit ASD organisation. Semi-structured pre and post-interviews with the parents participating in the programmes were conducted, focusing on feasibility. In addition, a quasi-experimental pre-post design was used to assess outcomes in multiple areas, including knowledge of ASD, confidence, parental stress, and functioning of the child using standardised questionnaires. A waiting list group were used as control for the two active groups.
Results:
The consensus evaluation framework set out three core areas deemed relevant and important to PET programmes - Outcomes, Process and Implementation. ‘Outcomes’ related to changes in parent including knowledge of ASD and emotional well-being. In addition, changes in child well-being and family functioning were determined to be important features of PET goals. ‘Process’ included the acceptability and accessibility of the programme. ‘Implementation’ priority evaluation areas included sustainability, scalability and integration between systems and organisations.
11 families participated in the EB/EB+ programmes and 10 in Autism Cares,all completed the programmes. Participant ages ranged from 26 to 57 years and monthly household income ranged from less than $360 to between $1800-$7200. Qualitative post programme feedback from participants was very positive for both EB/EB+ and Autism Cares.
Here we will present the head-to-head comparison of findings in context of the consensus evaluation framework.
Conclusions:
Depite the acknowledged value of parent education training, there hasn't been consensus on an evaluation framework for the range of PET that are delivered around the globe. Our implementation science study suggested that, whilst efficacy is an important pre-requisite for potential use, many other factors may have to be considered to determine the most suitable programmes for successful implementation and scale-up in local communities.