Sickle cell disease is an inherited blood disorder that causes recurrent episodes of severe pain, chronic anemia, and progressive damage to organs, and roughly 70 percent of children born with it worldwide are born in sub-Saharan Africa. In western Kenya, where it is common, it is treated as a medical condition, and its psychosocial consequences for young people and their families go largely unaddressed. Psychosocial interventions for the disease exist, but nearly all were developed in high-income countries and few have been adapted for the settings carrying the greatest burden. The lab’s work documents that burden and is now using it to build a response.
What the research showed
A survey of 103 primary caregivers of children ages 1 to 10 assessed family quality of life, caregiver adjustment, and depressive symptoms using standardized measures alongside locally developed items covering medication access, transportation, and stigma. Caregivers reported difficulty across nearly every domain, with daily and household activities most affected, and roughly 70 percent screened positive for depressive symptoms. Financial hardship predicted poorer outcomes on every subscale.
“I try to look strong outside, but inside I feel different.”
A subsequent qualitative study examined how those experiences change with age. Fifteen focus group discussions across three urban and rural clinics included 54 adolescents and young adults ages 10 to 25, 18 caregivers, and 18 healthcare providers. Thematic analysis identified emotional burden, social exclusion at school and among peers, and health system barriers, and found that concerns follow a developmental pattern. Younger adolescents emphasized pain and vulnerability, middle adolescents social visibility and keeping up at school, and older youth independence and the transition from pediatric to adult care. Provider stigma and the cost of care ran through every age group.
From findings to design
Rather than ending with publication, the team returned these findings to the three hospitals as the opening phase of a participatory design process, so that the people the research described could interpret it and decide what should follow. The first intervention to come out of that process is DIRA, an eight-session psychosocial program delivered by peer navigators who are themselves living with sickle cell disease. The design process is described on the DIRA page.
Key Publications
Ochieng, Y. A., Patel, S. M., Nazareth, A., Rono, W., Owino, L., Githinji, C. N., Midiwo, N., Kondiek, E. A., Saina, C., Muigai, F., Bonner, M., & Puffer, E. S. (2026). "I just want to be normal": Psychosocial experiences of adolescents and young adults with sickle cell disease in Kenya. Cambridge Prisms: Global Mental Health, 13, e56.
Kuerten, B. G., Brotkin, S., Bonner, M. J., Ayuku, D. O., Njuguna, F., Taylor, S. M., & Puffer, E. S. (2020). Psychosocial burden of childhood sickle cell disease on caregivers in Kenya. Journal of Pediatric Psychology, 45(5), 561–572.