Facilitators and barriers to care for adolescents living with sickle cell disease in Kampala, Uganda

This is the authors' abstract. We don't add key points for this paper.

Introduction: Globally, care and treatment for sickle cell disease have improved over the years; however, several challenges continue to hinder the provision of quality care in low-income countries. There is an urgent need for a deeper understanding of the facilitators and barriers to care for adolescents living with sickle cell disease. We explored the perceived perceptions of sickle cell care by parents, health workers, and adolescents at the sickle cell clinic in Mulago National Referral Hospital in Kampala, Uganda. Methods: This study was conducted within Mulago National Referral Hospital in Kampala, Uganda. In-depth interviews were conducted with adolescents (n=14) and parents/ caregivers (n=11). Patient records were used to select both in-care and out of care adolescents. Key informant interviews were (n=5) long-serving health workers at the sickle cell clinic. Some of the transcribed data in local languages were translated verbatim into English, coded, and analyzed. Key themes were identified using a thematic content analysis approach. Results: Adolescents and caregivers highlighted several facilitators that played an important role in keeping adolescents in care. These included receiving free and proper medical care from knowledgeable and caring health workers, the health workers’ experience in effectively managing pain, and the supportive involvement of family members. Adolescents also emphasized that feeling better after receiving care motivated them to continue with treatment. However, various barriers to care were reported, including inadequate drug supplies and frequent stock-outs, high costs, long wait times at the health care facility, restricted working days, insufficient staffing, and limited space, which compromised confidentiality, one toilet facility, all of which hindered the provision of quality care for adolescents living with sickle cell disease. Conclusion: Improving adolescent retention in sickle cell care requires addressing systemic challenges such as resource constraints and enhancing healthcare delivery. For nursing practice, this emphasizes the need for advocacy, capacity building, and innovative care models. Future research should explore sustainable interventions to strengthen patient-centered care in low-resource settings.