Bringing Parent-Child Interaction Therapy to South Africa: Barriers and Facilitators and Overall Feasibility-First Steps to Implementation.

There is a large assessment and treatment gap in child and adolescent mental health services, prominently so in low- and middle-income countries, where 90% of the world's children live. There is an urgent need to find evidence-based interventions that can be implemented successfully in these low-resource contexts. This pre-pilot study aimed to explore the barriers and facilitators to implementation as well as overall feasibility of Parent-Child Interaction Therapy (PCIT) in South Africa. A reflective and consensus building workshop was used to gather South African PCIT therapist (N = 4) perspectives on barriers, facilitators, and next steps to implementation in that country. Caregiver participants (N = 7) receiving the intervention in South Africa for the first time were also recruited to gather information on overall feasibility. Facilitators for implementation, including its strong evidence base, manualisation, and training model were described. Barriers relating to sustainability and scalability were highlighted. Largely positive views on acceptability from caregiver participants also indicated the promise of PCIT as an intervention in South Africa. Pilot data on the efficacy of the treatment for participating families are a next step. These initial results are positive, though research on how implementation factors contribute to the longer-term successful dissemination of PCIT in complex, heterogeneous low-resource settings is required.

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

LAY ABSTRACT: After a diagnosis of autism, it is an important first step to give families information about autism and skills to help them support their child. These interventions are called Parent Education and Training programmes. Little is known about these programmes or if they can make a difference to families, particularly in countries with few autism resources. In this study, we compared two Parent Education and Training programmes in South Africa. EarlyBird/EarlyBird Plus was developed in the United Kingdom, and Autism Cares in South Africa. We wanted to know if parents found the programmes useful, and if any changes were required. We collected information from parents through questionnaires and interviews before and after the group. We also asked a panel of experts (including parents) to compare the programmes. In total, 18 parents attended the EarlyBird/EarlyBird Plus group and 11 attended the Autism Cares group. Parents found both programmes helpful and made suggestions for improvements. Parents showed less stress, more knowledge of autism, and saw improvements in their children. The expert panel rated EarlyBird/EarlyBird Plus as better because it was more supportive of parents and was seen as easier to run in the country. Our study showed that Parent Education and Training programmes are important, but that researchers must study not only the outcomes but also the implementation needs of these programmes.

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

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.

Developing an Evaluation Framework for Parent Education and Training in Autism Spectrum Disorder: Results of a Multi-stakeholder Process.

Despite the need for parent education and training programmes in autism spectrum disorder (ASD), there is no generally-accepted evaluation framework to select programmes for different settings. Here we generated an evaluation framework using a multi-stakeholder, implementation science approach. Purposive sampling identified ASD experts, implementation/health systems experts, and parents/carers of individuals with ASD. A consensus-building stakeholder workshop with 14 stakeholders and thematic analysis was used to generate themes and components of the framework. Main themes included 'Outcomes' (parent, child, family and community), 'Processes and Procedures' (accessibility, acceptability, psychological process, and referral pathways) and 'Implementation Landscape' (sustainability, scalability, integration and coordination, and monitoring and evaluation). We propose that the evaluation framework and Evaluation Framework Checklist generated could guide clinicians, researchers and policy-makers.

Scoping the evidence for EarlyBird and EarlyBird Plus, two United Kingdom-developed parent education training programmes for autism spectrum disorder.

EarlyBird and EarlyBird Plus are parent education and training programmes designed by the UK National Autistic Society in 1997 and 2003, having been delivered to more than 27,000 families in 14 countries. These group-based programmes aim to (1) support parents immediately after diagnosis of autism spectrum disorder, (2) empower parents, encouraging a positive perception of their child's autism spectrum disorder and (3) help parents establish good practice. In the absence of any previous comprehensive review, we performed a scoping review of all peer-reviewed publications on EarlyBird/EarlyBird Plus. A search was conducted between February and June 2016 using EbscoHost, Sabinet, SAGE Journals, Directory of Open Access Journals, BioMed Central, Scopus, ScienceDirect and grey literature. Two reviewers independently screened titles and abstracts for inclusion. In total, 18 articles were identified: 16 from the United Kingdom and 2 from New Zealand. We reviewed the context, study populations, design, outcome measures, whether focus was on parental perception, parental change or child changes and programme feasibility. Strong parental support for the acceptability but lower level evidence of efficacy of EarlyBird/EarlyBird Plus was found. Future research should consider randomised controlled trials. There is no research on EarlyBird/EarlyBird Plus in low-resource settings; therefore, we recommend broader feasibility evaluation of EarlyBird/EarlyBird Plus including accessibility, cultural appropriateness and scalability.