The Taking Charge after Stroke Follow-up Study (TaCAS-FU): Longterm follow up of participants in the Taking Charge after Stroke (TaCAS) study

This is a follow up study of a multicentre, randomised, controlled, parallel-group trial, with participants originally enrolled in seven New Zealand centres. Follow up will be blind to original treatment allocation. Participants in the original TaCAS study received one of three interventions, between two and 16 weeks following their stroke: 1) A single Take Charge session (TCS). 2) Two TCS; with the second six weeks after the first. 3) No TCS. For participants in the single TCS group in the original TaCAS study: This is a single 50-minute session (following a 30 minute baseline assessment) designed to engage the patient and their family in the process of recovery. This facilitates a process where patients identify for themselves areas where they could make progress and set personal goals i.e. self-directed rehabilitation (SDR). These are conducted either alone with the participant, or with a support person(s). There is no limit to the number of family/support people who can be involved. The baseline assessment of function and risk factors provides the context for the TCS. The TCS is identical to the TCS delivered in the Maori and Pacific Stroke Study (Harwood M, Weatherall M, Talemaitoga A, Barber PA, Gommans J, Taylor W, McPherson K, McNaughton H. Taking charge after stroke: promoting self-directed rehabilitation to improve quality of life - a randomized controlled trial. Clin Rehabil. 2012;26:493-501). Each session employs a structured format using the following main headings: Overall hopes, Main fears, My ‘Best Day’, Physical, Communication, Emotional/Mood, Information needs, Financial, Family, Secondary prevention. The process of describing goals under each heading is explained and where these are forthcoming they are written down. The person and family are encouraged to see this as an ongoing process where they can set new goals and modify existing goals at any time themselves. The person and family are encouraged to consider intermediate steps to the goal and how long it might take to achieve these. Finally they are encouraged to think about ways of making these intermediate steps happen. They are encouraged to ‘take charge’ of the process, having seen for themselves where the key issues are, and given basic skills and supports to write a self-directed rehabilitation plan for themselves (the person with stroke and their family). The intervention is delivered by a research assistant trained to be a facilitator of this process. For participants in the two TCS group in the original TaCAS study: The first session was identical to that of the single TCS group (including 30 minute baseline assessment). The second session was identical to the first session followed by a review of the goals and plan from the first session, and any additional goals. The same general headings were used to facilitate discussion. A reflective approach to problem-solving were maintained, including any difficulties achieving goals in the previous 6 weeks. As in the first session, family members/support people were encouraged to be involved. The duration of the second session was approximately 50 minutes. The current study will include all surviving members of the previous study (4-5 years after their initial stroke) who consent to the follow-up. Participants will be screened for survival using medical records and then contacted by mail seeking consent to acquire health outcome information for a small subset of the original outcome measures (physical health, subsequent strokes, independence, living situation). These will be collected on paper (return mail), or by telephone (verbal consent) if there is no response to the mailout or if requested by the participant. Completion of all questionnaires is not expected to take more than 20 minutes for each participant, once completed their participation in the study is finished.