Exploring the sickle cell disease knowledge of premarital counseling team members of faith groups; a multi-center mixed-methods study

Background Sickle cell disease (SCD) is a prevalent monogenic disorder of haemoglobin in sub-Saharan Africa. Being recessively inherited, SCD is preventable through public health educational strategies targeting would-be couples. As faith leaders serve as gatekeepers entrusted with marriage solemnization, their SCD knowledge is critical in any intended educational interventions. Aim To explore the SCD knowledge of faith leaders who serve as premarital counselors. Methods This mixed-methods exploratory study employed semi-structured questionnaires and structured interviews to explore the SCD knowledge of individuals with premarital counseling experience. Overall, 142 semi-structured questionnaire responses were initially collected; subsequently, 18 structured interviews were conducted. Respectively, questionnaire and interview responses were quantitatively and thematically analysed; p < 0.05 was considered statistically significant under two-tailed assumptions. Results Overwhelmingly, 95.8% of participants self-reported having heard about SCD, compared to 60.3% who knew their respective sickle cell status. The overall SCD knowledge score was fair (51.1%). However, although participants knowledge about SCD screening test was excellent (91.5%), participants knowledge about SCD incidence (20.9%) and clinical manifestations (34.7%) were poor. In relation to the capacity of these faith leaders to discharge their responsibilities, 80.0% and 30.0% respectively indicated not having a written premarital counseling protocol or team in place. However, participants unanimously self-reported having received no formal training in premarital SCD screening results interpretation. Furthermore, 51.9% of participants indicated that having a SCD was a matter of fate and should not be a consideration for marriage; with significantly (p < 0.001) higher proportionate Christians (60.0%) and Muslims (56.3%) compared to those identifying as belonging to other faith groups (17.4%). Participants were less favourably disposed to assistive reproductive technologies compared to adoption when alternative reproductive options were explored. Conclusions There is the need to standardize premarital counseling protocol and implement tailored genetic literacy programme to build faith leaders’ capacity to oversee effective premarital counseling.