Abstract:
Background: Adolescents and young adults with sickle cell disease (SCD) in Kenya experience
psychosocial challenges shaped by developmental transitions and social and health system
contexts. Limited research has examined differences across adolescence and young adulthood
in low-resource settings. Methods: We conducted a qualitative study using focus group discussions and thematic analysis to explore psychosocial experiences across three stages: early
adolescence (10–14 years), middle adolescence (15–17 years) and late adolescence or young
adulthood (18–25 years). Participants included 54 adolescents and young adults with SCD,
18 caregivers and 18 healthcare providers recruited from three healthcare facilities in western
Kenya. Results: Three themes emerged: (1) emotional and psychological burdens, including fear,
uncertainty and identity-related struggles; (2) social challenges, including peer exclusion, family
strain and school-related difficulties and (3) healthcare system barriers, including financial
hardship, provider-related stigma and limited transition support. Challenges followed a developmental pattern, with younger adolescents emphasizing pain and vulnerability, middle
adolescents highlighting social visibility and school participation and older youth focusing
on independence and continuity of care. Conclusion: Psychosocial needs vary across developmental stages and are shaped by social and health system contexts. Developmentally
responsive support, including pain coping, school engagement, and transition services, is
needed in low-resource settings.
