Determinants of marital decision despite sickle cell status awareness: a mixed method study

Sickle cell disease (SCD) is a significant public health concern in Nigeria. Despite widespread awareness campaigns advocating for premarital phenotype testing, many couples still make marital decisions that increase the risk of having children with SCD. This study aims to explore the factors influencing marital decisions among parents of children with SCD, focusing on the relationship between phenotype awareness and marital choices.

This mixed-method study was conducted among 209 parents of children with SCD receiving care at the paediatric haematology clinics of University College Hospital (UCH) and Oni Memorial Children Hospital (OMCH) in Ibadan, Nigeria. Quantitative data were collected through interviewer-administered structured questionnaires. Qualitative data were obtained through key informant interviews with stakeholders, including parents, healthcare providers, and SCD advocates. Qualitative data were thematically analysed and integrated with the quantitative findings.

Findings revealed low premarital awareness of sickle cell phenotypes as only 14.5% of couples had mutual knowledge, while 36.7% were completely unaware. Key factors influencing phenotype combinations that carry risk of SCD birth included a willingness to "take the risk and hope for the best" (46.7%), limited understanding of the implications of SCD (33.3%), willingness to bear consequences (26.7%) and reliance on faith (20%). Higher educational levels correlated with improved awareness.

This study identifies significant gaps in premarital genetic awareness. Key gaps include a lack of knowledge about the implications of phenotype combinations and the tendency to prioritise cultural, emotional and religious factors over genetic risk considerations when making marital decisions. To bridge these gaps, improved public health education, accessible pre-marital genetic counselling and strategic engagement with religious and community leaders are essential to translating awareness into informed action.