Younger adults with stroke Taking Charge: self-directed rehabilitation program for a chronic young stroke population

The intervention is an adapted version of the original Take Charge self-management intervention, tailored specifically for younger adults with chronic stroke. The Take Charge intervention was originally developed for a broader stroke population. As such, some of its themes and examples (e.g. grandparenting) may not reflect the needs, priorities, and perspectives of younger adults with stroke. In addition, many people with stroke experience communication accessibility challenges. As part of this study, the original Take Charge booklet will be adapted in partnership with people with lived experience of stroke, members of the research team, and the original Take Charge developers. The adaptation process aims to ensure that the intervention content reflects issues relevant to younger adults with stroke and meets accessibility and inclusion standards for communication. The final version of the adapted booklet will be reviewed by lived experience contributors prior to use in the trial. Participants allocated to the intervention group will receive one session of the Take Charge intervention, delivered via telehealth by a trained facilitator, with an approximate duration of 1 hour. The adaptation of the Take Charge booklet will be conducted through a series of workshops and meetings involving the project researchers, including researchers with lived experience of stroke. These sessions will be held either in person or online and will focus on identifying and discussing modifications to better meet the needs of younger adults living with stroke. Communication access and inclusion will be considered throughout the process, with specific attention given to ensuring the booklet is accessible to stroke survivors with communication needs. It is anticipated that at least three meetings over approximately two months will be required to complete the adaptation process. The first workshop will be held in person and will be facilitated by the principal investigator in collaboration with two co-investigators with lived experience of stroke. This session is expected to last a couple of hours. Additional workshops will be scheduled as needed to finalise discussions. Semi-structured discussions will be used to explore potential changes to the booklet. These will focus on the relevance of content to younger adults with stroke, including assessment of figures (e.g., relevance, consistency with text, clarity, and accessibility), themes, and overall wording and clarity. Following the initial workshop, the principal investigator will incorporate the proposed changes into a revised version of the booklet. A subsequent meeting with co-investigators will be held to review and refine the adapted version (expert review). Once consensus is reached, the adapted Take Charge booklet for younger adults with stroke will undergo pilot testing within the research team prior to participant recruitment. Semi-structured interviews will be conducted during pilot testing to assess the clarity and usability of the booklet. Further refinements will be made if necessary. Researchers with lived experience of stroke will work in partnership with other co-investigators throughout the study. Intervention sessions will be delivered by a trained facilitator; researchers with lived experience of stroke will not be involved in delivering the intervention. Take Charge is a person-centered, self-management rehabilitation program designed to promote intrinsic motivation after stroke. It shifts the focus from a disease-centered approach to a person-centered one, encouraging individuals to take responsibility for their own recovery and to re-establish their identity beyond the effects of stroke. Delivered as a “talking therapy,” the program is led by the person rather than the clinician. The session consists of two parts. First, participants reflect on their identity, values, relationships, future aspirations, fears, and envision their “best day” to define what matters most to them. Second, they translate these aspirations into practical, achievable goals by breaking them into manageable steps across areas they choose, such as physical function, communication, or finances. In this feasibility trial, the Take Charge session will be delivered via telehealth (video call). Each session will be facilitated by a trained clinician (referred to as the facilitator) and delivered to one participant at a time. Sessions are expected to last approximately one hour but may be terminated earlier at the participant’s request. Prior to recruitment, the facilitator will receive training directly from Dr Harry McNaughton, one of the lead researchers involved in the development of the original Take Charge program. Training will be completed in a single session via video call and is expected to last approximately two hours. Intervention fidelity will be assessed to determine whether the Take Charge telehealth sessions are delivered as intended, and to evaluate their accuracy and consistency. Standardized training will be provided to all facilitators. At the end of each session, the facilitator will complete a fidelity checklist assessing whether all components were delivered as planned and whether participant engagement was achieved. At least 10% of sessions will be recorded (with prior participant consent) and independently reviewed by a senior researcher to assess consistency.