Peake, JN;
(2016)
Prevention of neural tube defects (NTDs) in ethnic communities in the UK: NTD epidemiology and pre-pregnancy knowledge, attitudes and health behaviour.
Doctoral thesis , UCL (University College London).
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Abstract
Neural tube defects (NTD) are severe congenital abnormalities, caused by failed closure of the embryonic neural tube, that affect approximately 1 in 1,000 pregnancies worldwide. There is a paucity of epidemiological and qualitative research on NTDs within different ethnic communities in the UK. This thesis reports the findings of a mixed methods study conducted to explore NTD prevalence, pregnancy outcomes and attitudes towards prevention in different ethnic communities. For the quantitative study, congenital anomaly data supplemented with Department of Health termination data were used to explore the NTD prevalence and pregnancy decisions by maternal ethnicity. Semi-structured interviews, combined with grounded theory methodology, explored women’s pre-pregnancy knowledge, attitudes and health behaviours with regard to folic acid supplementation, and subsequent pregnancy decisions. After adjustment for maternal deprivation and age, NTD prevalence was found to be nearly twice as high in Indian mothers and almost three times as high in Bangladeshi mothers, as in mothers of White ethnicity. The excess was particularly marked in Indian mothers for non-isolated NTDs. Through qualitative interviews, women detailed how more information on why folic acid should be taken needs to be given and that health professionals (HPs), such as GPs, are the preferred information source. It was also indicated that HPs who rarely see children with spina bifida are less likely to give a balanced view of the condition, in relation to a decision on possible pregnancy termination. An ethnic discrepancy in prevalence being more marked for non-isolated NTDs is indicative of the involvement of genetic factors. Increasing folic acid use among all population groups is essential and targeting a culturally sensitive education campaign at HPs is a crucial first stage in increasing supplementation among South Asian mothers. It is also of critical importance that those counselling mothers when spina bifida is detected, are fully informed of the condition themselves.
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