Making the invisible visible: Is the Talking Heads information package useful and acceptable for young survivors of stroke?

Brief Name: Talking Heads: an online psychoeducation package for young survivors of stroke Why: Existing stroke psychoeducation lacks relevance for younger adult survivors, focusses on physical or medical domains, has not been co-designed, and may not be accessible to those with cognitive or language impairments. This psychoeducation package has been designed to address those gaps. What (materials): Individuals are given access to the package which includes a mixture of asynchronous resources and active, collaborative psychoeducation. Resources cover six topics: 1) fatigue 2) brain fog 3) feeling overwhelmed 4) grief and loss 5) finding meaning, enjoyment, and hope 6) sex, relationships and intimacy. Information is presented in four modalities: Written 2-page tipsheets Brief 2-minute videos for social media Podcasts (one 30-minute and one 20-minute podcast) Online information sessions. (60 minutes each + optional 30-minute breakout room discussions) The tip sheets, videos and podcasts are hosted on a website (talkingheadsinfo.com.au) and available for participants to access as desired throughout the 12-week intervention period. The resources are designed to be informative while also normalising experiences and promoting hope. They provide clear strategies and tips and identify avenues for accessing further support if required. All information within the package uses simple and plain language and has been designed using accessibility principles to support usage by those with cognitive and language impairments. What (procedures): Participant usage of the package is self-directed and there are no formal attendance or engagement requirements. The three virtual information sessions will be spaced throughout the study with set dates and times in weeks 2, 6 and 10, delivered through online video-conferencing software. The sessions will be co-facilitated by an individual with lived experience of young stroke who will share their story, and a clinician who will provide further information and strategies. Participants will be able to pre-submit or ask questions live during the sessions, and they will also be provided the opportunity to connect directly with other participants through optional participation in break-out rooms at the end of the Q&A period. Who provided: Short videos: There are three clinicians speaking in the short videos (each of whom do two of the videos). These are clinical neuropsychologists (also members of the research team: Prof Dana Wong, Dr Nick Sathananthan and Michaela Grech) with clinical and research expertise in young stroke. Podcasts: Each of the two podcasts are a conversation between Prof Dana Wong (Clinical Neuropsychologist with >20 years clinical and research experience in acquired brain injury including stroke) and people with lived experience of stroke. One conversation is with a young male stroke survivor and his wife, while the other is with a young female stroke survivor. Online information sessions: Each of the three virtual info sessions will be delivered by an experienced clinical neuropsychologist or clinical psychologist working in stroke rehabilitation with expertise on the topic. A young stroke survivor with lived experience of the challenges being discussed will also share their story. How: All intervention components are delivered online. The tip sheets, videos and podcasts will be hosted on a website (talkingheadsinfo.com.au) and available for participants to access as desired throughout the 12-week intervention period. These will be accessible to the young stroke survivor and to their close other (family member, friend) if they are participating as a dyad. The three virtual information sessions will be delivered through Zoom an online video-conferencing software platform. These will be delivered as a group information session, with opportunities for pre-submitted and live questions, which will be answered by the clinician and the young stroke survivor. Participants will also be provided the opportunity to connect directly with other participants through optional participation in break-out rooms at the end of the Q&A period. Where: All intervention components are delivered online. When and how much: The website hosting the tip sheets, videos and podcasts (talkingheadsinfo.com.au) will be available for participants to log in and access as desired throughout a 12-week intervention period. Participant usage of the package is self-directed and there are no formal attendance or engagement requirements. They can return to each resource as many times as they wish. Therefore, the “dose” of each resource is flexible. The three virtual information sessions will each be 90 minutes in duration. The sessions will be spaced throughout the 12-week intervention period with set dates and times in weeks 2, 6 and 10. Tailoring: The Talking Heads package was co-designed with 14 young stroke survivors (over half with cognitive or communication difficulties including six with aphasia), 3 family members, and 12 multidisciplinary clinicians. The co-design process involved 90-minute focus groups or interviews conducted iteratively across two phases with young stroke survivors, family members and clinicians. In the first phase, they were asked about their preferences for the delivery modalities (e.g., tip sheets, podcasts) and topics (e.g., mood, memory difficulties) that should be included in the package. Prototypes of the preferred resources were then developed. In the second phase, participants provided their feedback and perspectives on the prototypes. Discussions were recorded and transcribed, and analysed using framework analysis. Unlike existing resources, this package is distinct as it was designed to be age-relevant for younger stroke survivors, accessible for those with aphasia or cognitive impairment, and the content covers common invisible challenges and adjustment-related difficulties rather than focusing on physical impairments and/or secondary stroke prevention. How well (planned): Intervention adherence or fidelity: Treatment fidelity will be measured, focusing on whether the package was delivered as intended. This will include: • exploration of whether all participants were provided with their website logins for the self-directed resources • documenting any technical issues that prevented access (e.g., website downtime, login problems) For the online information sessions, fidelity will be measured by: • whether sessions were conducted on the scheduled dates • whether all intended components were delivered (e.g., opportunity to ask questions). Delivery of the planned components will be evaluated after each session by a member of the research team using a brief checklist • documentation of any technical issues Participant adherence will also be measured. Given the self-directed nature of the intervention, non-adherence will be classified as participants who do not login to the self-directed resource portal and do not attend any online information sessions.