Assessing Facilitators and Barriers to Sickle Cell Disease (SCD) Testing and Treatment and Comparing the Effectiveness of Arts-Based vs. School-Based Community-Engaged SCD Education Outreach Programs for Adolescents in Kalangala, Uganda

Abstract

AbstractBackground: With the bulk of global sickle cell disease (SCD) research primarily focusing on high-income/low-burden countries, countries such as Uganda continue to report the highest rates of SCD as a result of this inequity. Three out of four of those affected worldwide are born in sub-Saharan Africa (Macharia et al., 2018). The primary goals of the study are to address the current research gap in the acceptability and feasibility of SCD interventions among youth in Kalangala, Uganda by understanding 1) the efficacy of various education modalities to improve SCD knowledge among adolescents, 2) changes in health behaviors, self-perception, and family planning among adolescents after SCD education interventions, and 3) the impact of SCD-related stigma on willingness to access SCD screening, treatment, and knowledge. Youth stakeholders are the primary target population of this study. Youth stakeholders provide a unique perspective apart from their adult counterparts, as this demographic starts to consider the interconnectedness of individual health, family planning, and health access. Methods: Sixty-five stakeholders contributed to a total of 18 interviews (8 focus group discurssion; 10 in-depth interviews). The study incorporated an applied thematic analysis for all interviews to assess knowledge and perceptions of SCD, facilitators and barriers to SCD services, and outlooks on individual and family health. Results: Due to COVID-19 restrictions, this study was permitted to complete in-depth interviews and focus group discussions among youth. Analysis revealed that participants were not aware of the pathology of SCD, but were familiar with the social and health implications of having SCD. The most frequent facilitators and barriers included: access to SCD education; stigma; community engagement; and economic barriers. Conclusions: Findings from this study indicate potential areas for further engagment with youth stakeholders through health interventions that offer education in SCD pathology, and available services in order to mitigate the effects of SCD in a low-resource and vulnerable area. In addition, there is a need to address stigma and misconceptions in SCD, which requires a multi-sectoral and interdisciplinary approach that engages all community stakeholders. This study can inform future SCD interventions among youth members in Kalangala, Uganda.