This study’s objective is to identify facilitators and barriers to positive illness perception of stroke survivors and their caregivers during acute hospitalization.

Despite increasing stroke incidence in US adults younger than 44 years, little is known about their illness perceptions, which have been shown to impact stroke recovery and possibly secondary prevention.

Stroke survivors and caregivers participated in virtual focus group sessions with semi-structured interview guides assessing perceptions of hospitalization and general wellbeing. Sessions were recorded and transcribed using NVivo software. Framework method was used for analysis; three independent coders developed a comprehensive codebook from transcripts. Framework matrices were used to identify recurrent themes, which were then determined to be facilitators or barriers to positive illness perception during acute hospitalization.

Stroke survivors and caregivers (n=12) participated in seven focus group sessions. Younger survivors (n=4; 3 male, 1 female survivors) were aged 25 to 44, compared with older survivors (n=8; 3 female survivors, 5 female caregivers) aged 45 to 84. Across each phase of acute hospitalization, five themes related to illness perceptions emerged: (1) symptom recognition and health system navigation; (2) communication of diagnosis and management; (3) presence of a champion; (4) clinician bias; (5) psychological distress. Clinician bias, psychological distress, and the inability to recognize stroke symptoms emerged as unique barriers for younger stroke survivors.

Despite experiencing a similar diagnosis, illness perceptions of younger stroke survivors were distinct compared to older counterparts. Younger survivors experienced bias and psychological distress, exposing differential treatment in care. A facilitator to positive illness perception among both populations was the presence of a champion; in younger survivors, advocacy of a partner was crucial for diagnosis, suggesting the importance of symptom recognition in younger populations. Future studies are required to explore the transferability of our findings and to investigate clinician recognition of stroke in younger populations.