Pepea Pamoja:† Applying the Ecological Validity Framework to co-develop a wellbeing and behavioural training program for caregivers of young children with autism in low-resource settings of Kenya and the United States.

BACKGROUND: Autism is a complex neurodevelopmental disability with global prevalence of one in 100 individuals. Poor access to interventions in both under-resourced regions of high-income countries and low- and middle-income countries has deleterious effects on the health and wellbeing of individuals with autism and their families. Our objective was to utilize a reciprocal innovation framework and participatory methods to adapt and co-develop a culturally grounded group-based wellbeing and naturalistic developmental behavioural intervention (NDBI) training program for caregivers of young children with autism to be implemented in Kenya and rural Indiana. METHODS: This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH) program. An evidence-informed Naturalistic Developmental Behavioral Intervention (NDBI) previously utilized in Indiana was adapted and iteratively refined using the Ecological Validity Framework (EVF) by a team of US and Kenyan disability experts. Key adaptations to the program were made across the EVF domains of language, persons, metaphors/content, concepts, goals, methods, and context. RESULTS: Substantial cultural adaptations were made to the NDBI following the EVF model, including the addition of traditional Kenyan cultural practices, use of narrative principles, and focus on daily routines over play. Pepea, the adapted program, involves 10 group sessions covering content in basic education on autism, positive caregiver coping strategies, and behavioural skills training to promote child communication and reduce challenging behaviour. Key adaptations for Pepea were integrated back into a US NDBI caregiver training program. CONCLUSIONS: This study fills a critical gap by detailing the adaptation process of a caregiver wellbeing and naturalistic developmental behavioural training program for caregivers of children with autism in low-resource settings. Our next steps are to report on mixed-methods outcomes from pilot implementation. Our long-term goal is to apply these insights to advance sustainable and scalable autism intervention services across the globe.

Understanding the need for pediatric neurodevelopmental services among households in western Kenya: A population-based study.

Introduction: Existing estimates of rates of childhood disability in Kenya are based on data with important limitations. Individual-level data on childhood disability at the local level is also lacking, leaving critical knowledge gaps for clinical and programmatic development. Objectives: We aimed to estimate the rates of children at-risk for disability, examine the external factors related to risk of childhood disability, and gain a better understanding of the challenges experienced by children at-risk for disabilities and their families within western Kenya. Methods: We conducted a small, cross-sectional randomized community survey to assess the rates of childhood disability across six administrative locations in Uasin Gishu County, Kenya, and to understand the experiences of these children and their caretakers. Results: Rate of childhood disability in Uasin Gishu county was estimated to be 5%, with the most common disabilities being mood disorders. Caretakers reported several barriers to accessing treatment for their children at-risk of having disabilities, including financial concerns and lack of transportation. Conclusions: Our findings suggest a need for improved access to care in this region, including addressing significant barriers to accessing care such as stigma and socioeconomic challenges. These community-level data will inform the development of future infrastructure and programming for this population.