Caregivers and Healthcare Workers Experiences and Preferences with Use of Penicillin Prophylaxis in Young Children with Sickle Cell Anemia in Uganda

Introduction: Bacterial infections are a major cause of sickle cell anemia related morbidity and mortality in young children with sickle cell anemia (SCA) in Sub-Saharan Africa. Penicillin prophylaxis is therefore recommended as a standard of care for all SCA children who are less than five years of age. Despite the proven benefit, compliance to penicillin prophylaxis remains poor among SCA children in sub-Saharan Africa. There is therefore, a need to investigate reasons for the poor compliance to penicillin prophylaxis in order to inform interventions to improve adherence. We explored the experiences and preferences of caregivers and healthcare providers regarding penicillin prophylaxis for young children with SCA in Uganda. Methods: We conducted a cross-sectional qualitative study in Sickle Cell clinics at Atutur General, Jinja Regional Referral, and Mulago National Referral hospitals in Uganda. Data was collected through seven Focus Group Discussions (FGDs) each with 6-8 caregivers of SCA children less than five years. In addition, 10 Key Informant Interviews (KII) were held with healthcare workers including, Pediatricians, Medical Officers, clinical medical officers, nurses, and dispensers, involved in providing care to SCA children at the clinics. All FGDs and KIIs were audio recorded and later transcribed verbatim. Data was analyzed using content thematic approach guided by the Consolidated Framework for Implementation Research (CFIR). Results: The caregivers who frequently used the medicine reported improvements in their children's health. The major improvements mentioned across all the three study sites were, a reduction in the frequency of sickness and a reduction in the number of hospitalizations. However, most caregivers struggled to maintain their SCA children on penicillin prophylaxis. The main reasons for poor adherence were difficulty in giving the medicine, the bitter taste and an undesirable smell, all of which made it unattractive to most children. Other reasons for poor adherence to the medicine included distant health facilities, frequent stock-outs of the drug, limited health education for caregivers, and long waiting times at SCD clinics which hindered optimal use of penicillin prophylaxis. On the other hand, facilitators of penicillin prophylaxis mentioned were the availability of the medicine at the hospitals, financial support to buy the medicines when not available at SCD clinics, and reminders to give the medicines. Regarding preference, most caregivers and health care workers preferred oral formulations rather than parenteral forms of the penicillin. Oral forms were considered to be easy to pack, store and are relatively cheap whereas injectables were thought to exacerbate the pain in SCA children and would require skilled health care workers to administer. A few voices noted that injectable penicillin prophylaxis could reduce visits to hospitals, thus saving time for caregivers, and would reduce the pill burden among the SCA children. Conclusions: Penicillin prophylaxis is perceived to still be effective in reducing SCA related morbidity in young children in this population. Adherence to the prophylaxis was however low due to unfavorable palatability of the medicine in its present form and access issues. Overall, most caregivers and health care workers preferred oral to injectable formulations of the medicine. Increasing access to penicillin prophylaxis for SCA children in Uganda requires providing more child friendly formulations of the medicine and strengthening the health system to ensure adequate availability of the drug.