Abstract
The project aimed to identify socio-cultural factors influencing attitudes to sickle cell disease (SCD) and decisions about a pregnancy at risk of producing a child with sickle cell anaemia; and to identify differences between African and Caribbean respondents. Sample: Phase 1 - General public African and Caribbean men and women; Phase 2 -Pregnant African and Caribbean women with sickle cell trait (HbAS) Phase 3 - Pregnant women from Phase 2 and their partners, who have HbAS, placing the couple at-risk of having a child with HbSS. Methodology: Phase 1 and 2 - a questionnaire (appendix 1) examining - knowledge of SCD and five attitude variables - importance of having children, locus of control in genetic decision-making, prevention of birth of children with SCD, perception of the burden and severity of SCD. Phase 3 - semi structured interview (appendix 3), which examined attitude and response of pregnant women and their partners to their being at-risk of having a child with sickle cell anaemia. Result: Statistically significant differences were observed between African and Caribbean respondents in areas which include - knowledge of SCD p=0.005; perception of a high level of burden of SCD, p=0.000; importance of having children, p=0.000; with Africans having a higher mean score in all these categories. Unexpectedly the age at which an individual migrated to the UK had an impact on attitude supporting the hypothesis that culture influences attitude. Significant differences were observed in those born/ migrated 15 years of age - importance of having children p=0.000; perception of severity of SCD p=0.002; perceived high level of burden of SCD p=0.000, in all these areas those migrated >15 years of age had higher mean scores. Discussion: The increasing demand for individuals to seek genetic testing and avoid the birth of children with genetic disability has placed greater pressure on members of society, especially pregnant women, and raises many dilemmas which few people are prepared for or able to manage. The pressure to have children and the society’s opposition to having children with a disability, especially in some African communities contributes to increasing anxiety and tension. In this study in responding to being at-risk of having a child with SCD few African or Caribbean respondents opted for prenatal diagnosis with the intention of terminating an affected fetus. There often arises a tension between, a cultural demand to produce offspring, society’s stigmatization of those who produce ‘sickly’ children and the religious conviction that it is not appropriate to interfere with God’s creation (fetus) and its outcome. The cognitive dissonance that this tension creates was amply demonstrated in this study and the way which individuals attempt to deal with this has included obfuscation of knowledge, reducing the importance of the dissonant cognition and adding a consonant element in order to justify behaviour and reduce dissonance. The application of dissonance theory has helped to explain some of the reasons behind some African and Caribbean peoples’ reluctance to seek information or testing for sickle cell before marriage or having children; and declining the option of prenatal diagnosis with a view to terminating an affected pregnancy.