Co-Developing the My Ultimate Stroke Toolkit (MUST): A User-Centered Post-Discharge Education and Training Program for Stroke Survivors and Caregivers - PROJECT SUMMARY/ABSTRACT Stroke places a sudden and significant burden on both survivors and their caregivers, and caregivers are often thrust into their roles without preparation or formal training. Most stroke survivors return home with long-term disabilities, making ongoing education and support critical for recovery and quality of life (QoL). Yet, current stroke education is often unstructured, generic, and fails to accommodate stroke-related impairments, or digital literacy and technology access challenges. To address these challenges, this proposal will develop and pilot test My Ultimate Stroke Toolkit (MUST), a digital intervention providing personalized stroke education and training, digital literacy support, and technology access for survivors and their caregivers. During the K99 phase, foundational work will explore real-world challenges and needs related to stroke education, digital literacy, and technology access. A control cohort of 36 stroke survivor–caregiver dyads will be enrolled and stratified based on digital literacy and access to technology. Longitudinal data will be collected at discharge (T0), 3 months (T3), and 6 months (T6), including outcomes such as stroke survivor quality of life (NeuroQoL), functional status (Section GG), falls, all-cause hospital readmissions, and caregiver strain. Additionally, a subsample of 20 dyads will participate in qualitative interviews at T3 to explore their post-discharge education needs and experiences. In the R00 phase, these findings will be used to co-develop a user-centered theoretical framework guiding the design of MUST, a digital intervention with tailored educational content and digital literacy and technology access support. The app will be developed and refined through usability testing, followed by pilot testing of the full MUST program. A matched cohort of 36 dyads will receive the intervention. Using a non-randomized, historically controlled design, outcomes from the intervention group will be compared to the control cohort to evaluate feasibility, acceptability, and preliminary efficacy on quality of life, independence, falls, readmissions, and caregiver strain. The project aims are as follows: Aim 1a–b (K99) will identify digital literacy and technology access levels among a control cohort of stroke survivors and collect longitudinal outcome data. Aim 2 (K99) will involve conducting qualitative interviews to explore challenges and needs related to post- stroke education, which will inform the development of a digital literacy intervention and a user-centered theoretical framework. Aim 3a–c (R00) will focus on designing digital literacy intervention and MUST app, and iteratively refining the MUST app. Finally, Aim 4 (R00) will evaluate the feasibility, acceptability, and preliminary efficacy of the MUST program through a pilot trial, using the control cohort for comparison. This study is the first of its kind to directly address digital literacy and technology access as critical challenges to stroke education. Findings will inform future large-scale trials and eventual community-based implementation and dissemination, with the long-term goal of enhancing ongoing support for stroke survivors and caregivers to improve their outcomes.
