Lived Experiences and Coping Strategies of Adults with Sickle Cell Disease in Uganda: Implications for Improving Health and Well-Being

Introduction: Sickle cell disease (SCD) is a significant contributor to childhood morbidity and mortality in Uganda and sub-Saharan Africa. However, with improvements in clinical care, many children have reached adulthood. However, there is a paucity of data on their experiences despite the importance of patient-reported perspectives to inform interventions for improving their quality of life. We explored the lived experiences and coping strategies of adults living with SCD in Kampala, Uganda.

Methods: We conducted a qualitative study at the oldest and largest sickle cell clinic in Uganda located at Mulago National Referral Hospital in Kampala between March and July 2022. Data were collected through in-depth interviews with 15 adults aged 25 to 40 years living with SCD attending the clinic, as well as five key informant interviews with healthcare workers at the sickle cell clinic, the Ministry of Health and a non-government organization providing support to people living with SCD. All interviews were audio recorded, transcribed verbatim and analyzed using a content thematic approach.

Results: The adults living with SCD described facing significant physical, social and emotional challenges such as stigma and discrimination at family, community and institutional levels in the context characterized by inadequate support. Furthermore, adults with SCD encountered difficulties in attaining education, securing employment and accessing health care services, each of which they perceive as having negatively affected their quality of life. The major coping strategies adopted were drawing on religious beliefs, striving to attain adherence to medical treatment and seeking support from their networks, especially their families.

Conclusions: The voices of adults living with SCD in this study depict the intersecting social, economic and psychological challenges and vulnerabilities that negatively affect the quality of life of affected adults. Stigma, challenges from health care, educational and vocational systems, as well as a general lack of formal support, dominate the everyday experiences of adults living with SCD in Uganda. Affected adults draw on religion, adherence to medical treatment and support, especially from their families, as major coping strategies. There is a need to strengthen support from health care, social, religious and vocational support for patients with SCD beyond childhood. Addressing this gap in support will require more investment from public and private sectors with local, national and global resources to optimize the health and well-being of young adults living with SCD.

Green:Theravia: Other: Donation of study drug. Idro:Theravia: Other: Donation of study drug for which I am PI.