Co-designing a survey on computer-mediated communication use among adolescents with acquired brain injury: evaluating participant experiences in a mixed-methods study
Lisa Kakonge
A B C * , Hannah Boamah D , Shannon E. Scratch B E F , Nnenna Utomi A , Amtul Hayee G , Danaeya Wolfe A , Jessica Tomarchio B , Kathy Gravel B , Michelle Phoenix A , Briano Di Rezze A , Catherine Wiseman-Hakes A and Lyn S. Turkstra A
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Abstract
Computer-mediated communication (CMC) – using technology to engage with others via digital platforms (e.g. social media) – is an integral mode of social interaction for adolescents. Integrating CMC into rehabilitation could benefit adolescents with acquired brain injury (ABI), yet its use is under-studied. This study aimed to address this gap by co-designing a survey on CMC use among adolescents with ABI and evaluating the project team’s perceptions of engagement in the co-design process post-study.
The project team comprised 10 interest-holders: youth with ABI (n = 2), rehabilitation professionals (n = 2), researchers (n = 5), and a family member (n = 1). Survey co-design sessions conducted via videoconferencing were guided by the Double Diamond (DD) Framework. Mixed-methods analysis included descriptive statistics from the Patient and Public Engagement Evaluation Tool (PPEET), qualitative insights on team engagement and reflexive thematic analysis of memos, and overview of survey categories and questions.
Five co-design sessions resulted in the Social Media Building Blocks (SMBB) survey, refined through piloting with two youth with ABI and a health literacy review. PPEET data showed strong team engagement, with 5/6 ‘strongly agreeing’ their views were heard and valued. Thematic analysis of team memos identified three themes: valuing diverse perspectives, enthusiastic engagement in co-design, and the importance of reflexivity. The final SMBB survey included four question categories: participation in online communication, accessibility, post-ABI communication experiences, and desired supports.
Project team members valued the collaborative survey design phases and engaging youth with ABI. Findings highlight co-design frameworks’ potential to enhance engagement in rehabilitation research.
Keywords: acquired brain injury, adolescents, co-design, computer-mediated communication (CMC), engagement, rehabilitation, social media, youth engagement.
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