Objectives <p>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.</p> Methods <p>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.</p> Results <p>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.</p> Conclusions <p>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.</p>

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

  • James Soland,
  • Mandy J. Rispoli,
  • Chelagat Saina,
  • Mark Omollo,
  • Emmanuel Mwendwa,
  • Carolyne Boke,
  • Rujun Xu,
  • Rebecca McNally Keehn,
  • Jamie N. Pearson,
  • Tonia Hassinger,
  • Carol Stauffer,
  • Megan S. McHenry

摘要

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.