Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

“…Screening was not undertaken or timely choices and options were not provided. 29 Like others, 22 this study found that a diagnostic test offered later in pregnancy may be unacceptable. The increasing use of chorionic villus sampling early in pregnancy is likely to make prenatal diagnosis more popular across all communities.…”

“…[22][23][24][25][26] Regardless of attitudes to termination, prenatal testing can reduce anxiety if the fetus is unaffected, or allow parents to prepare for an affected pregnancy and best plan care for both their child and their own support. Raising awareness of Islamic teaching on termination might also help.…”

“…This sample included people from a wide range of ethnic, cultural, religious, and linguistic backgrounds, to provide a breadth of perspectives. Unlike earlier work prior to universal screening across England, 13,14,22 individuals of European origin were included. However, the numbers in each category were relatively small and further research with particular groups is desirable to give greater depth and nuance to the range of perspectives identified here.…”

A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs

“…Public education and awareness campaigns in many countries have greatly reduced the frequency of infants born with thalassemia major (Angastiniotis et al 1986;Gill and Modell 1988;Lakhani 1999). Thalassemia is a genetic disorder, and it will be a challenge to educate the loweducated and socioeconomically disadvantaged communities (Atkin et al 1998). Responses from the FGDs indicated that an effective solution will be through multi-lingual leaflets with simple and clear illustrations on inheritance patterns.…”

Decision-Making and Ante-Natal Screening for Sickle Cell and Thalassaemia Disorders

“…Decision making about prenatal diagnosis, however, is multifaceted and it is impossible to generalize (de Montalembert et al, 1996;Modell et al, 1997;Atkin et al, 1998;Ahmed, et al, 2000;Parker et al, 2002;Tsianakas and Liamputtong, 2002). Even among Muslim populations, who demonstrate even greater reluctance to terminate pregnancies than other religious groups, one study has shown that 67 per cent say that they would consider termination following a prenatal diagnosis of thalassaemia (Hewison et al, 2004).…”