Facilitators and Barriers to Self-care Management of Sickle- Cell Disease among Caretakers of Children with Sickle-Cell Attending a Regional Referral Hospital, Eastern Uganda: A parallel Convergent design

Background Sickle cell disease is a hereditary disease caused by a derangement of the β-globin gene and is characterized by sickling of the red blood cell. Globally the effect of sickle cell was acknowledged to have a great public effect with the great effect being in Africa were mortality rate in children below five years was above 50%. Home based practices are integral to prevention of sickle cell crisis. The aim of this study was to explore the facilitators and barriers to adherence to home-based practices towards the management of sickle-cell disease among caretakers of children with sickle-cell attending Mbale regional referral Hospital. Methods and materials: A Parallel convergent design was utilized. For the quantitative arm a simple random sampling was employed, questionnaires was used to collect the data by a direct interview method; data collected was entered into Stata version 17 for statistical analysis. For the qualitative arm a purposive sampling was use, in-depth interview guide was used to guide the in depth interview. Data collected was analyzed using Braun & Clarke’s approach. Results Most participants were mothers (66.5%), married (87%), and self-employed (88%) with the majority being the Bagwere tribe (56%). The home based practices were divided in the themes of use of herbal medicine, following medical advice and pain crisis management. Barriers to home based care practices were health system gaps, financial constraints, transportation difficulties and falling sick burden. The facilitators to home based care were of financial and emotional support, health worker support, hospital support, and adherence to medical advice. Conclusion This study demonstrates that adherence to home-based care practices for the management of sickle cell disease among caregivers remains sub-optimal, exposing affected children to preventable complications and frequent illness episodes. Caregivers’ ability to effectively manage SCD at home is strongly influenced by social, financial, and health system factors, including limited knowledge about the disease, financial constraints, transportation challenges, and gaps in health service support. At the same time, the presence of supportive health workers, access to hospital services, social and emotional support, and adherence to medical advice were identified as key facilitators of effective home-based care. These findings highlight the need for comprehensive, family-centred interventions that strengthen caregiver education, improve financial and social support mechanisms, and enhance continuous engagement between caregivers and health workers. Clinical trial number: Not applicable