Issues of reproductive choice : a study of counselling and screening for haemoglobinopathies within maternity settings in Birmingham
This thesis studied genetic counselling for haemoglobinopathies within maternity settings that catered for a relatively large at-risk population. In total four separate studies were conducted, two were undertaken to assess the feasibility of counselling parents of neonatal traits and current practices of other haemoglobinopathy centres in this area. The counselling and screening facilities available to pregnant women and their partners were also explored in a third survey and a final study looked at the knowledge/skill base of midwives at the forefront of maternity services. These studies collectively provided a unique insight into genetic counselling for carrier individuals within maternity settings in Birmingham. In the first study (Centre Survey - CS) the key findings highlighted that not all centres routinely followed up neonatal traits in the same way as those diagnosed with a major haemoglobinopathy. Likewise disparities existed in the way appointments were made and the venues used for counselling appointments. In the Neonatal Trait Survey (NTS) a knowledge, attitude scale and emotional reaction of parents were used as outcome measures to assess the effect of counselling parents of neonatal traits. The findings highlighted a significant improvement in respondents’ knowledge of sickle cell trait (SCT) and the disorder (SCD) after counselling. Attitude responses also demonstrated significant improvement post counselling. The Antenatal Survey (ANS) provided a ‘snapshot’ of counselling experiences of at-risk women and their partners at their antenatal clinic appointments (in particular during booking clinics). The findings showed deficits in counselling of genetic risk and reproductive options (including the availability of prenatal diagnosis [PNS]). The final study, the Midwives Survey (MWS) examines the knowledge/skill base of midwives in providing counselling for at-risk couples. The findings of this survey showed that midwives did not have the necessary knowledge and counselling skills to meet the needs of this client group.