JMIR Publications

ABSTRACT

Background:

Racial and ethnic disparities in attention-deficit/hyperactivity disorder (ADHD) diagnosis are well documented, yet community partner engagement in addressing these disparities remains limited.

Objective:

This study used a community-engaged approach to involve parents of children with ADHD in identifying barriers to ADHD awareness, defining parent-prioritized educational needs, and guiding the design, development, and dissemination of an ADHD educational resource.

Methods:

We formed a community advisory board (CAB) of parents of children with ADHD residing in racially and ethnically diverse communities in Riverside County, California. Three in-person CAB meetings were conducted, and the meeting discussions were audio-recorded and transcribed for thematic analysis. During the CAB meetings, members discussed their lived experiences, barriers to accessing ADHD resources, and strategies for early identification and support, with their inputs directly shaping the educational resource design.

Results:

Eleven parents from the local communities participated in our CAB. In addition to the key ADHD symptoms of inattention and hyperactivity/impulsivity, common signs that the CAB members recognized in their children included emotional and behavioral dysregulation, social challenges, psychiatric comorbidities, and strengths including hyperfocus and creativity. During their journeys navigating diagnosis, treatment, and support for ADHD, the CAB members experienced barriers with limited availability of relevant information; stigma, stereotypes, and misconceptions; and difficulties obtaining adequate support at schools. They emphasized the need for stories of lived experiences to illustrate the diversity of experiences among individuals with ADHD and for easy-to-understand, accessible information for parents to support their children with ADHD. Inputs from the CAB were integrated into the iterative design of a web-based ADHD educational resource that uses a strengths-based, neurodiversity-affirming approach to address stigma and promote awareness of ADHD in diverse communities.

Conclusions:

This study demonstrates that partnering with parents of children with ADHD in diverse, underserved communities yields actionable insights that can be translated into practical, culturally relevant strategies to promote ADHD awareness. The resulting web-based resource reflects community-defined priorities and may serve as a model for participatory approaches to addressing ADHD diagnostic disparities.