Introduction: Recovery following stroke is challenging at any age, but young stroke survivors face additional challenges due to relationship, caregiving, and work roles. This study explored experiences of young stroke survivors following transition into community.
Methods: Stroke survivors under 65 years were recruited through posts on social media and email to complete a 15-20 minute online survey that contained 22 questions about the information they received following their stroke and accessing services in the community. Descriptive statistics were used to describe quantitative data (SPSS)and open-ended responses were analysed qualitatively.
Results: Thirty-two respondents (70% female) were included. 65% of participants received care in an inpatient hospital ward. Most respondents did not access additional services after discharge. 40% of participants reported negative experiences of the stroke journey with some reporting receiving little or no guidance. 72% of participants reported daily fatigue, 22% reported daily depression, 81% reported sensory overload, and 87% reported cognitive challenges. Nearly half 44% of respondents reported daily anxiety. Negative aspects of recovery related to lack of support and advocacy, mental health, identity and connection.
Conclusions: This study found gaps in information and support to guide stroke survivors through their recovery journey, highlighting limited focus on the un-seen deficits of stroke which are associated with stigma and could reduce confidence in the transition into community participation. Future work will focus on opportunities to develop strategies and education on trauma and stigma in the recovery journey.
Relevance to clinical practice or patient experience: The Clinical Guidelines for Stroke Management outline best-practice recommendations, such as provision of tailored information and education to meet individual needs and stage of recovery. The findings highlight that the information and support provided to stroke survivors have not met their individual needs.