Developing Culturally Responsive Surveys on Neurodevelopmental Disabilities: Lessons from the Kenyan Context

Abstract

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 offers a replicable model for researchers aiming to develop participatory, culturally responsive tools for deployment in underrepresented contexts, and contributes to efforts to improve autism knowledge and support in Kenya and LMICs.