Facilitating choice and agency when cognition is compromised: Enhancing self-advocacy skills for system navigation for people with acquired brain injury.

The Intervention (MYSAY Program) will involve participants receiving 9 individual sessions (40-60 minutes) over a 6-month period to support the development of their self-advocacy skills for system navigation. This 9 session MYSAY program content has been specifically developed for this study and guided by participant feedback from an initial pilot study. It will be delivered by a qualified allied health professional (MYSAY Facilitator), who (in consultation with the Project Co-ordinator and appropriate research team members) will tailor the timing and content of sessions based on individual needs and preferences (depending on factors such as medical status, other rehabilitation program commitments and availability of family and personal supports). Key components will include: - Sessions 1 & 2 (40 minutes each) conducted in person in the brain injury inpatient units and will involve rapport building and discussing service access, support needs, goals, and preferences. Sessions 1 and 2 will be conducted within the final 4 weeks prior to discharge from the inpatient unit - Sessions 3-9 (60 minutes each, 7 sessions over the period of approximately 5 months) conducted in-person or via videoconferencing (depending on the individuals' preference and for example, how far away they live) after the individual has returned to community living. The sessions will be flexibly scheduled in accordance with the care transitions (e.g., before and after important care transitions such as the first appointment with the GP, discussions with an employer or changes in community rehabilitation providers). The sessions will be adapted to include family members, care staff and key treating healthcare professionals as desired by the individual. The sessions will support individuals to develop self-advocacy skills related to identifying, communicating, and enacting their needs and choices to address relevant service access obstacles or system navigation issues. This will occur through: - Identifying self-advocacy goals and opportunities for the person to express their care needs and preferences and developing action plans to address relevant access obstacles. - Developing a personalised platform using participants’ preferred device and formats (e.g., paper-based and/or electronic) that collates information and resources about their health, goals, care team and support options. - Following session 4, participants will have the option to receive at least one session co-facilitated by a trained peer leader with lived experience of ABI and the MYSAY facilitator to learn about support options in the community. Tailored aspects of the intervention relate to the flexible scheduling of the sessions across the 6 months (e.g., fortnightly or monthly sessions) according to the preferences of the person with ABI, involvement of family members or care staff nominated by the individual, the choice to meet a peer leader with lived experience of ABI in one or more sessions, the choice of format of the personalised platform and the sessions more generally being informed by the person’s self-advocacy goals to guide action plans to address relevant service access obstacles. Session attendance, tailored components of each person’s program (e.g., presence and nature of involvement of family/carers, peer support, type of platform selected) and completion/retention will be systematically recorded using an excel spreadsheet by the Project Coordinator.