Abstract:
Background: Autism is a complex neurodevelopmental disability with global preva-
lence 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 deleteri-
ous 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 care-
givers 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 itera-
tively 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 rinciples, 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 communi-
cation 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 ser-
vices across the globe.