Oral Presentation Asia Pacific Stroke Conference 2024

Lived experience of younger adults after stroke: A qualitative sub-study of ARCOS V (107354)

Shobika Ravindran 1 , Rita V Krishnamurthi 2 , Alan A Barber 3 , Suzanne Barker-Collo 4 , Derrick Bennett 5 , Jeroen Douwes 6 , Daniel Exeter 7 , Balakrishnan Nair 2 , Anna Ranta 8 , El-Shadan Tautalo 9 , Amanda Thrift 10 , Valery Feigin 2 , Felicity Bright 11
  1. Rehabilitation Innovation Centre, Health and Rehabilitation Research Institute, Auckland University of Technology, Auckland, New Zealand
  2. National Institute for Stroke and Applied Neurosciences, AUT University, Auckland, Auckland, AUCKLAND, New Zealand
  3. University Research Centre for Brain Research, The University of Auckland, Auckland, New Zealand
  4. School of Psychology, University of Auckland, Auckland, New Zealand
  5. Nuffield Department of Population Health, University of Oxford , Oxford, United Kingdom
  6. Research Centre for Hauora and Health, Massey university, Wellington, New Zealand
  7. School of Population Health, The University of Auckland, Auckland, New Zealand
  8. Department of Medicine (Wellington) , University of Otago, Wellington , New Zealand
  9. AUT Pacific Health Research Centre , Auckland University of Technology,, Auckland, New Zealand
  10. Faculty of Medicine, Nursing and Health Sciences , Monash University, Clayton, , Victoria,, Australia
  11. Centre for Person Centred Research, School of Clinical Sciences, Auckland University of Technology, Auckland, New Zealand

Background: The incidence rate of stroke in younger adults have increased by 23% in the last decade with women having higher incidence rate compared to men. Nevertheless, the experiences and unmet needs of younger stroke survivors are under researched.

Aim: Our aim was to understand the lived experiences of younger stroke survivors as they navigated day-to-day life after stroke, and to identify how this could inform future service provision in New Zealand.

Methods: A qualitative description methodology was used. Participants were recruited from a larger population-based study in New Zealand. Inclusion criteria: (1) aged 20–55 years and (2) first-ever stroke. Semi- structured interviews were conducted via teleconferencing. Recordings were transcribed verbatim. A qualitative conventional approach to content analysis was used to identify themes.

Results: Fifteen participants completed the interviews (median age:47 years). Three themes were developed:1) Individual impacts of limited societal awareness; 2) Impact on psychosocial wellbeing; 3) Burden of life roles. Lack of awareness of stroke in young individuals led to self-stigma, fear of rejection and identity changes. In addition to physical and cognitive challenges, participants reported multiple emotions following stroke diagnosis. Challenges reported included returning to work, financial burdens, engagement in household chores, participation in social events and management of various life roles.

Conclusion: Stroke services fail to meet the unique needs of younger stroke survivors leaving them with persistent unmet needs. Engaging with people’s lived experience provided insights that could improve clinical practice and support in tailored rehabilitation services.