Community awareness of sickle cell disease and Community-Based Interventions in Tabora Region

Abstract

Sickle Cell Disease (SCD) is a major public health and social challenge in Tanzania, yet most research and services are concentrated in urban referral centres. Evidence from rural districts, where many affected families live, remains limited. Guided by the socio-ecological model and the social determinants of health framework, this study examined community awareness of SCD and the perceived effectiveness of existing Community-Based Interventions (CBIs) in Uyui and Urambo Districts, Tabora Region.

A cross-sectional household survey was conducted with a proportionate sample of 309 household heads. A structured questionnaire captured socio-demographic characteristics, SCD-related knowledge, information sources, intervention exposure and perceived effectiveness. Quantitative data were analysed using descriptive statistics, while qualitative information from key informants and documents was examined through content analysis.

Community recognition of SCD was high (93.9%), and 87.7% of respondents reported knowing at least some symptoms. Most understood SCD as hereditary, with 67.1% citing inheritance of the sickle cell trait as the cause. However, knowledge of at-risk groups was uneven (57.0% aware), and 59.2% were unsure whether SCD is curable. Information pathways were dominated by family and friends, with health workers rarely cited as first sources. Around 60.2% of respondents reported that no effective SCD interventions existed in their communities. Recognized interventions mainly included screening and nutrition services; participation across 17 types of activities was very low (72–87% rated “never”), and most interventions were rated ineffective or very ineffective.

Findings reveal a gap between a high nominal awareness of SCD and a shallow, uneven understanding of risk, inheritance and treatment, as well as weak, poorly perceived CBIs. To improve their impact, SCD responses in rural Tanzania must move beyond narrow biomedical models toward participatory, culturally embedded interventions that integrate screening and treatment with clear, low-literacy communication, psychosocial support, stigma reduction and stronger roles for frontline health workers, local leaders, and community networks.