Background: Sickle cell disease (SCD) is a common monogenic inheritable condition in sub-Saharan Africa. 30% of Ghanaians are estimated to be carriers creating a condition for stable SCD penetrance. Being inheritable, SCD is scientifically preventable through intentional spousal selection. This study therefore explored young adults' knowledge, beliefs and prevention strategies regarding SCD.

Methods: This exploratory study employed a mixed-methods approach (semi-structured questionnaires and focus group discussion [FGD]) to explore the SCD knowledge and beliefs of participants (15-49 years). The data collection was intentionally sequential; initial administration of 386 questionnaires and then followed by the FGD (16 participants). FGD was thematically analysed whereas quantitative data was explored using structural equation modeling (SEM); p < 0.05 was considered statistically significant under two-tailed assumptions.

Results: Whereas 98.7% reported having heard about SCD, < 50% got the information through formal education. Overall, 49.7% knew their respective SCD status; the proportion increased with age (48.8% in < 30 years vs 64.4% in ≥ 30 years old), or higher degree status (48.8% in undergraduates vs 67.4% in postgraduates). Moreover, whereas nine-in-ten correctly identified that SCD is hereditable, three-in-ten believed that having a SCD child was a matter of fate. Our FGD revealed that whereas curses, and spiritual attack were misconceived as potential causes of SCD, stigmatization associated with SCD was a major concern. The SEM demonstrated that one's knowledge about SCD prevention is significantly positively associated with relationship choices (b = 0.757, p < 0.05). Also, a participant's knowledge about SCD preventive strategies was significantly associated with the individual's beliefs about SCD (b = 0.335; p < 0.05). However, a participant's SCD beliefs negatively mediated SCD preventive strategies-relationship choices association.

Conclusions: SCD beliefs likely transform linear quantitative associations into a complex non-linear interaction; public health campaigns ought to unearth and address SCD beliefs to maximize achieving the intended targets.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11348774PMC
http://dx.doi.org/10.1186/s13690-024-01379-1DOI Listing

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