Adapting a Caregiver Skills Training Intervention for Families of Children with Developmental Disabilities in South Africa

Background: Working towards the goal of closing the gap in access to care for children with developmental disabilities (including children with autism spectrum disorder) in low- and middle-income countries, the World Health Organisation developed a novel, open-access Caregiver Skills Training (WHO CST) programme that can be implemented in low-resource settings by non-specialists. However, it is essential to maximise the contextual fit of this intervention with the particular families that are being served, the providers who deliver the intervention, and the diversity of service settings. Without considering adaptations, the WHO-CST programme may lack acceptability, relevance, and sustainability in the local context.

Objectives:

Our objectives are (1) to consider adaptations of the WHO-CST intervention (i.e. a complex intervention) and its implementation using a participatory multiple-stakeholder approach; (2) to develop and test replicable, easy-to-use, and cost-effective documentation methods for recording adaptations and/or modifications (i.e., pragmatic measures); (3) to provide contextual process data to interpret outcomes (i.e., how adaptations contributed to outcomes); and (4) to create an organised list of adaptations that future implementers can consider.

Methods: A comprehensive and integrated assessment of the WHO-CST intervention (that takes stakeholders, the socio-cultural context and setting into account) informs the dynamic adaptation process. Adaptations are considered throughout a four-phase implementation and evaluation process, namely: (1) exploration, (2) preparation, (3) implementation, and (4) sustainment. A mixed methods research approach using multiple data sources are considered (i.e., stakeholder workshops, focused interviews, questionnaires, checklists, and logs, and expert reviews) to systematically capture data on the nature of the adaptation and the characteristics of the population and settings.

Results: The presentation will discuss the adaptation process and outcomes during the exploration and preparation phases of the study. Our findings describe how an academic-community partnership consisting of a multidisciplinary team of researchers, practitioners, implementers, and end users identified ways to integrate research evidence, local knowledge, and stakeholders' preferences in adapting the WHO-CST intervention in South Africa.

Conclusions:

There are no gold standard procedures for the adaptation of complex interventions in low- and middle-income countries. Yet, considering adaptations in a planned and considered manner, rather than ad hoc way, is especially important to maintain intervention fidelity and to ensure acceptability, appropriateness, and sustainability of the intervention. This study describes the real-world implications of adapting a caregiver skills training intervention to be implemented in a low-resourced South African context.