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Unique Needs and Challenges Experienced by Young People With Stroke: An International Qualitative Analysis
Marika Demers1, Marina Charalambous1, Li Khim Kwah1
1University of Southern California (MD, CW), Los Angeles; Université de Montréal (MD); CRIR-Institut universitaire sur la réadaptation en déficience physique de Montréal (IURDPM) (MD), CIUSSS du Centre-Sud-de-l'Île-de-Montréal, Quebec, Canada; Cyprus University of Technology (MC), Limassol, Cyprus; University of Fribourg (MC), Switzerland; Singapore Institute of Technology (LKK); Singapore General Hospital (ST); University Hospital Centre Zagreb (DB), Croatia; University of Virginia (SC); Richmond VA Medical Center (SC); Assiut University (AN), Egypt; Antwerp University Hospital (LY), Belgium; University of Tasmania (DA), Hobart (TAS); The Florey Institute of Neuroscience and Mental Health (JB), Heidelberg, Victoria, Australia; and The KITE Research Institute- Toronto Rehabilitation Institute (UG), University Health Network, Ontario, Canada.
Background And Objectives:
Stroke in young adults has a lifelong impact on activities of daily life, including driving, leisure, and community-based activities; social participation; and reduced productivity. The needs of young people with stroke (YPwS) are likely to vary across different countries, and the development of age-adapted information and interventions is therefore critical in addressing those needs. This study aims to (1) identify the unmet needs of people with stroke aged 18 to 55 years across countries with varied income levels and cultural backgrounds and (2) determine their preferred means to access knowledge and information about stroke in the young.
Methods:
This international needs analysis used a phenomenologic qualitative design to gain in-depth perspectives about the experiences of YPwS. Participants were recruited from 9 countries of varied socioeconomic status. We interviewed 44 participants with stroke (men: 22; women: 21; transman: 1; mean age: 44.2 ± 8.5 years) living in the community (range of time since stroke: 0.5-10 years). The semistructured interview focused on lived stroke experience, unmet needs, helpful strategies to meet individual needs, hopes, and dreams. The interview was recorded, conducted in the participants' native language, and transcribed verbatim. Data were analyzed using inductive thematic analysis.
Results:
Four main themes emerged from the interviews: (1) heterogeneity of unmet needs specific to YPwS, (2) invisible disability, (3) lack of age-specific stroke information, and (4) call for accessible information resources available in different formats. The results highlighted the need to provide long-term and contextually tailored support to YPwS, aligned with their recovery goals and age-specific needs. Initiatives such as peer-support groups, self-management or peer-mentoring programs, information resources in various formats, and participation in research projects could help address the unique needs of this population.
Discussion:
Our results emphasize the importance of raising awareness of stroke in the young and the unique challenges of this population. Future research could focus on the development of stroke care pathways specific to YPwS.
