“I just want to be normal”: Psychosocial experiences of adolescents and young adults with sickle cell disease in Kenya

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.