JMIR Publications

ABSTRACT

Background:

Traditional rehabilitation research often excludes the voices of individuals with lived experience of traumatic brain injury (TBI), resulting in interventions that lack relevance, accessibility, and effectiveness. Community-Based Participatory Research (CBPR) offers an alternative framework that emphasizes collaboration, power-sharing, and sustained engagement with patients, caregivers, and clinicians.

Objective:

The objective of this paper is to demonstrate how CBPR can be systematically applied to the formative design and evaluation of Electronic Problem-Solving Training (ePST), a metacognitive, evidence-based mobile health (mHealth) intervention for individuals with TBI.

Methods:

A multi-step, mixed-methods design case methodology was adopted, guided by CBPR principles and Learning Experience Design (LXD). Participatory mechanisms included a 33-member Community Advisory Board (CAB) and 10 Community Engagement Studios (CES), which engaged TBI survivors, caregivers, clinicians, and researchers throughout the Discover, Define, Develop, and Deliver phases of the Double Diamond model. Iterative activities included empathy interviews (n=14), persona development (n=10), rapid prototyping, and usability testing with five TBI participants using think-aloud protocols and the Comprehensive Assessment of Usability for Learning Technologies (CAUSLT).

Results:

Usability evaluation demonstrated high user satisfaction with CAUSLT scores averaging 87.3 out of 100 and 80% accuracy on knowledge assessments. The participatory process yielded three key findings: (1) iterative community feedback directly enhanced technical usability through specific design modifications including microlearning modules (5-12 minutes), badge system refinements, and voiceover tone adjustments; (2) multi-stakeholder representation systematically identified design considerations that single-stakeholder approaches overlook, with caregivers contributing family involvement features, clinicians providing evidence-based validation, and individuals with lived experience prioritizing autonomy elements; and (3) TBI-specific design requirements emerged, including the need for linear content progression over branching navigation, higher technical performance standards, and explicit content signaling with clarity prioritized over novel interface design. Think-aloud protocols revealed that participants struggled with mobile navigation and branching structures but excelled with sequential content progression. This study provides evidence that systematic CBPR implementation produces measurable improvements in rehabilitation technology usability while contributing methodological insights for participatory design in cognitive rehabilitation.

Conclusions:

This study provides evidence that systematic CBPR implementation produces measurable improvements in rehabilitation technology usability while contributing methodological insights for participatory design in cognitive rehabilitation. Findings demonstrate that sustained community engagement (spanning entire development cycles) creates superior technical outcomes compared to traditional consultation approaches, establishing CBPR as both an ethical imperative and practical methodology for developing effective, accessible rehabilitation interventions.