Background/Objectives: Hidden consequences of stroke, such as low mood, fatigue and cognitive difficulties, affect over half of young stroke survivors (YSS); yet age-relevant, accessible information is lacking. Our study aimed to co-design a tailored psychoeducation package addressing invisible challenges in YSS.
Method: Focus groups or interviews were conducted iteratively across two phases with YSS, 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.
Results: Participants included 14 YSS (median age-at-time-of-stroke 35 years; median time-since-stroke 4.5 years), three family members and 12 multidisciplinary clinicians. Six YSS had aphasia. Tip sheets, short videos, podcasts and virtual information sessions were the preferred delivery modalities. Preferred topics were fatigue; brain fog; feeling overwhelmed; grief and loss; finding meaning, enjoyment and hope; and sex and intimacy. Participants preferred that the resources use YSS’ own terminology, such as “brain fog” rather than “cognitive difficulties”. They liked the use of simple language, icons, graphics, and clear explanations.
Conclusions: Findings highlight the importance of accessible, meaningful content which should reflect the language used by YSS, and delivery modes that will engage YSS and their families. A second study is planned to evaluate the feasibility, acceptability, and potential impact of the package.