Abstract:
Objectives Autism research in low- and middle-income countries (LMICs), including Kenya, remains limited despite its
growing global prevalence. This instrument development pilot study paper describes a process for developing culturally
grounded survey instruments to assess the knowledge and beliefs of caregivers and educators of children with autism in
western Kenya.
Methods Our approach blended evidence-centered design, a psychometric framework for designing measurement tools
that are valid for their intended use, with community-based participatory research, which emphasizes equitable stakeholder
involvement.
Results In this study, we detail the measure we created and, more importantly, the process used to blend evidence-centered
design and community-based participatory research. We demonstrate how merging these two traditions can enhance the
cultural and contextual validity of evidence around survey instruments in low- and middle-income countries.
Conclusions Our work ofers a replicable model for researchers aiming to develop participatory, culturally responsive tools
for deployment in underrepresented contexts, and contributes to eforts to improve autism knowledge and support in Kenya
and LMICs.
