A qualitative study of lived experience 5–8 years after young-onset stroke: UCL Young Stroke Systematic Evaluation Study (ULYSSES)

Objective To explore lived experience after young-onset stroke. Design This embedded qualitative analysis formed part of a larger, ongoing observational follow-up study of young-onset stroke. Using an open-ended prompt at the end of a structured questionnaire, participants were invited to share further insights on their life after stroke. These responses formed the dataset for this qualitative analysis. Two authors developed codes and themes using reflexive thematic analysis, guided by the Biopsychosocial Model, and Coping and Adaptation Theory. Setting Telephone, electronic, or postal follow-up assessments were conducted between 13 September 2024 and 13 May 2025 with individuals who had been admitted to the University College London Hospitals Hyperacute Stroke Unit 5–8 years earlier with ischaemic stroke or intracerebral haemorrhage and were aged <55 at the time of stroke. Participants Of 127 eligible participants, 80 responded (age range: 20–54 years; 33 females; 65 with ischaemic stroke; 15 with intracerebral haemorrhage). Results Four themes emerged: (1) persistent ‘hidden’ disabilities affecting daily life; (2) loss of sense of self and disruption of age-normative roles; (3) systemic gaps in stroke awareness and long-term support; and (4) emotional resilience developed in response to life disruption. Conclusions Young-onset stroke has profound and lasting effects, including ‘hidden’ disabilities that remain prevalent years later. Our findings emphasise the need for increased public awareness of young-onset stroke and call for a more holistic, long-term post-stroke care model that supports not only functional recovery but also the restoration of identity and life roles.