Shenaz Ahmed

Decisions about testing and termination of pregnancy for different fetal conditions: a qualitative study of European White and Pakistani mothers of affected children.

The aim of this study is to explore reasons for and against prenatal testing and termination for a range of conditions in women from two different ethnic backgrounds. A total of 19 Pakistani and European women in West Yorkshire, UK, who either had a child with a genetic condition or had terminated a pregnancy for one, completed a questionnaire about their attitudes regarding prenatal testing and termination for 30 different fetal conditions and were interviewed about their reasons for their responses. There were more similarities than differences between the Pakistani and European white women. The most important factor in most women’s decisions about termination of pregnancy was their perception of the quality of the life of a child with the genetic condition, in particular, whether the child would be “suffering.” This was described as either physical suffering, as a result of medical treatment, or as emotional suffering, as a result of psychological and/or social factors. These findings highlight the need for detailed information about the potential quality of life for the child and the child’s family to enable parents to make informed choices, particularly the extent to which the child is likely to suffer, the nature of such potential “suffering” and the extent to which the child could lead a “normal” life. The findings also challenge stereotypes about cultural differences in attitudes about termination of pregnancy.

Decision-Making and Ante-Natal Screening for Sickle Cell and Thalassaemia Disorders: To What Extent do Faith and Religious Identity Mediate Choice?

When making decisions about prenatal diagnosis, couples not only draw on their understanding of the condition but also broader aspects of their cultural identity. This article looks at how faith and religion mediate attitudes towards screening, prenatal diagnosis and termination of pregnancy for sickle cell and thalassaemia disorders. The article specifically reports on a qualitative study, which used focus groups from a variety of faith communities (Muslim, Sikh, Hindu and Christian), at risk of haemoglobin disorders, living in England. Our findings suggest that the decision about whether or not to have diagnostic testing generally related to attitudes towards the termination of pregnancy. The consequences of the condition were as important as religious beliefs to most people. More generally, faith beliefs emerged as negotiable and contingent: realized within a broader moral framework. Religion was felt not to be prescriptive and reproductive decisions were seen as personal. When making decisions, people utilize faith within a broader context of individual, family and social relationships.

'Balance' is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource.

Objectives  The Antenatal Screening Web Resource (AnSWeR) was designed to support informed prenatal testing choices by providing balanced information about disability, based on the testimonies of disabled people and their families. We were commissioned by the developers to independently evaluate the website. This paper focused on how participants evaluated AnSWeR in terms of providing balanced information.

Interpretations of informed choice in antenatal screening: A cross-cultural, Q-methodology study

Informed choice is internationally recognised and accepted as an important aspect of ethical healthcare. In the U.K., NHS antenatal screening policies state that their primary aim is to facilitate reproductive informed choices. These policies, implemented within a multiethnic population, are largely guided by the ethical principle of autonomy. This study was carried out in 2009 in the U.K. and used Q-methodology to explore diversity in the value attached to autonomous informed choice in antenatal screening for genetic disorders and similarities and differences in this value in women from different ethnic origins. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin completed a 41-statement Q-sort in English, French, Mandarin or Urdu. Q-Factor analysis produced five statistically independent viewpoints of the value of informed choice: choice as an individual right; choice informed by religious values; choice as a shared responsibility; choice advised by health professionals; and choice within the family context. The findings show that women hold a variety of views on the nature of informed choice, and that, contradictory to policies of autonomous informed choice, many women seek and value the advice of health professionals. The findings have implications for the role of health professionals in facilitating informed choice, quality of care and equity of access.

Attitudes to prenatal diagnosis and termination of pregnancy for 30 conditions among women in Saudi Arabia and the UK

The aim of this research was to compare attitudes between women from different cultural and/or religious backgrounds toward prenatal diagnosis (PND) and termination of pregnancy (TOP) for 30 different conditions.

Thalassaemia Carrier Testing in Pakistani Adults: Behaviour, Knowledge and Attitudes

Objectives: To describe β-thalassaemia (thalassaemia) carrier testing behaviour (whether tested or intentions of testing) amongst a sample of UK Pakistani adults; their level of knowledge about thalassaemia, and their attitudes toward thalassaemia carrier testing. Method: In a cross-sectional design semi-structured interviews, data were obtained from 59 Pakistani adults including 19 parents of children with thalassaemia; 20 of their relatives, and 20 ‘lay’ adults. The outcome measures include: knowledge of thalassaemia and genetic inheritance, carrier testing behaviour, attitudes toward carrier testing and source of information about thalassaemia. Results: Knowledge about carriers and inheritance of thalassaemia was low. Intention to have carrier testing was low in those participants who had not been tested. Participants generally had positive attitudes toward carrier testing. Relatives and lay adults most frequently identified a thalassaemia family member as their source of information about thalassaemia, and only seven parents identified ‘a health service source’ as their source of information. Conclusion: Pakistani adults have insufficient knowledge to be aware of their risk of carrying a gene that may result in the birth of a child with thalassaemia. This finding may explain in part why intention to have carrier testing was low. Although thalassaemia is discussed in families where the disease is present, it is unlikely that information about its inheritance is discussed. Further empirical evidence is needed to improve the quality of information disseminated by both professionals and non-professionals to ensure Pakistani adults are able to make informed decisions about carrier testing, prenatal diagnosis and termination of pregnancy.

Is advice incompatible with autonomous informed choice? Women’s perceptions of advice in the context of antenatal screening: a qualitative study

Background  Patient autonomy in antenatal screening is a high priority for policy developers in many countries.

Islam and termination of pregnancy for genetic conditions in Pakistan: implications for Pakistani health care providers.

Prenatal diagnosis (PND) services have been available in Pakistan for over a decade, where Islam is the faith of over 95% of the population. This paper presents Islam’s stance on termination of pregnancy (TOP), the availability of a fatwa (religious ruling issued by Islamic scholars) in Pakistan for abnormalities, and its implications for health care providers (HCPs). The Quran (Islamic scripture) does not explicitly address TOP. Therefore, Islam’s stance on TOP for abnormalities is open to interpretation. Instead, scholars within different Islamic sects (schools of thought) have various viewpoints on TOP based on their interpretations of related Quranic verses, such as descriptions of the process of fertilization, development of the fetus and ensoulment (soul-breathing):

Experiences of parents with a child with Down syndrome in Pakistan and their views on termination of pregnancy

It has been argued that Down syndrome (DS) is as much a cultural creation as a biomedical condition, yet the majority of research in this area has been conducted in ‘Western’ cultures. This study explored parents’ experiences of their child with DS in Pakistan and their views on abortion for the condition. Thirty mothers and fathers of children with DS took part in qualitative interviews. Transcripts were thematically analysed. Parents used Islamic discourse to frame positive personal meanings of their child’s condition. These were contrasted with personal experiences of stigmatisation and rejection by family and community. An ambivalent cultural stereotype was revealed that characterised people with DS as abnormal and objects of pity but also as being closer to God and bringers of good fortune. Views on termination varied, but parents were generally supportive of the availability of abortion for DS due to the social stigmatisation they experienced. The findings reveal how parents negotiated their religious beliefs alongside personal experiences to inform personal views on abortion for DS. Advice to other parents about termination was rooted in Islamic discourse but emphasised pragmatic concerns about the impact of having a family member with intellectual disability in Pakistan.

Cluster breakup of 18O and 22Ne

The 14C + α breakup of 18O has been studied at energies of Ebeam = 136 MeV and 148.5 MeV, using a 200 µg cm−2 thick Be target. Several states belonging to the proposed octupole deformed band, previously associated with the 8.04 MeV, 1− and 8.22 MeV, 2+ states, have been populated through inelastic excitation. A candidate for the 7− member was not found, providing evidence that the negative parity component of the band terminates at the 5− member. This is shown to be consistent with the Nilsson description of the systematics in the 16O, 18O and 20Ne nuclei. In addition, several states at Ex > 13 MeV in 18O have been measured to α-decay for the first time. The α-transfer reactions 9Be(18O, 12C 10Be)5He, 9Be(18O, 13C 9Be)5He and 9Be(18O, 18O 4He)5He were also measured; however, little or no evidence for the population of states in 22Ne was found.