Attitudinal ambivalence towards Down’s syndrome and uncertainty in prenatal testing and termination intentions

This study aimed to investigate the relationship between attitudinal ambivalence towards Down’s syndrome (DS) and prenatal testing and termination intentions. Intentions towards using a screening test, a diagnostic test and termination of pregnancy for DS were collected from 140 pregnant women along with their attitudes and attitudinal ambivalence towards the condition. Women who were unsure about diagnostic testing and termination were more likely to hold ambivalent attitudes towards DS than were women who gave a definite yes or no response. In particular, a higher level of ambivalence about how a child with DS might impact on parental quality of life was significantly associated with an uncertain attitude towards termination of pregnancy. Qualitative data suggested that ambivalence towards DS was associated with a desire to make diagnostic testing and termination decisions with a significant other. The findings from this study inform debate on the link between ambivalence and informed choice and have implications for supporting prenatal testing decisions in women who hold ambivalent attitudes towards parenting a child with DS.     

Termination of pregnancy: attitudes and behavior of women in a traditional society

OBJECTIVES: The Bedouin Arabs, a Muslim traditional ethnic minority in Israel, are faced with difficult choices when offered prenatal diagnosis as part of the universally provided prenatal care in Israel. This paper is to examine attitudes towards and practice of pregnancy termination, following an unfavorable prenatal diagnosis. METHODS: Semistructured interviews with 83 women were conducted to study attitudes. Data from the Soroka Medical Center, where all births in the area take place, were used to assess the rate of terminations of pregnancies following a diagnosis of a chromosomal anomaly. RESULTS: While divided on the question of termination, many women believed that a second medical opinion is needed, preferably from an Arab physician. The reasons for termination are both child- and mother-related. Opposing termination is based on both the suspicion that the diagnosis might be wrong and on religious reasons. Between 1995 and 1999, 686 Bedouin women had undergone amniocentesis (2.4% of all pregnancies). Six of 11 pregnancies with the diagnosis of a trisomy were terminated (54.5%). All cases in which a trisomy was terminated were trisomy 21. CONCLUSIONS: Culturally acceptable prenatal diagnostic services for Muslim populations should be based on early testing, and should involve Muslim physicians and religious authorities.     

Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down's syndrome

This study surveyed the views of 78 women who had a sibling with Down's syndrome towards using prenatal diagnosis and termination. Other data were collected, including participants' perceptions of the difficulty of caring for a child with Down's syndrome, perceived familial approval of selective termination, and the quality of the sibling relationship. Fifty‐four per cent of respondents said they would use diagnostic tests for Down's syndrome in a future pregnancy, 37% would not, and 9% were unsure. In contrast, 33% would consider terminating a pregnancy for Down's syndrome, 53% would not consider termination, and 14% were unsure. Logistic regression showed that the perceived difficulty of caring for a child with Down's syndrome and perceived parental approval of selective termination were the strongest overall predictors of both attitudes. However, women who were younger than their affected sibling were more likely to want to use prenatal diagnosis, and a generally favourable attitude towards abortion predicted a favourable view towards terminating a pregnancy for Down's syndrome. In general, a positive picture emerged of having a sibling with Down's syndrome although around one‐third of the women viewed the impact on themselves and their family as negative and this was reflected in their attitudes towards prenatal testing and termination.     

Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: a comparison of white and Pakistani women in the UK

OBJECTIVES: To compare the attitudes of women from two different ethnic backgrounds to prenatal testing for a range of conditions, and to see if "clusters" of attitudes to different conditions could be identified, for which prenatal testing might be offered as a package. METHODS: Four hundred and twenty white and Pakistani women living in the UK were surveyed about their attitudes to prenatal testing and termination for 30 different fetal conditions. All participants had recently had a baby. RESULTS: Pakistani women held more favourable attitudes to prenatal testing, but less favourable attitudes to termination than their white counterparts. Both groups were most in favour of termination for the same four conditions: anencephaly, trisomy 13 or 18, quadriplegia, Duchenne muscular dystrophy. The rank ordering of conditions was also similar. Only 4% of Pakistani and 2% of white women wanted no prenatal testing at all. Fewer than a quarter of participants would consider a termination of pregnancy for 85% of the conditions, but only 25% of Pakistani women and 6% of white women would consider termination for none of the conditions. More advanced statistical analyses were used to measure how closely associated the 30 conditions were in respondents' answers. These analyses identified a principal dimension, reflecting the overall perceived seriousness of the conditions, and a cluster of severely disabling conditions-anencephaly, trisomy 13 or 18, quadriplegia, Duchenne muscular dystrophy, and severe learning difficulties-which stood out from the rest. Even within this cluster there remained a considerable amount of individual variation. CONCLUSION: Women in the study wanted to make up their own minds about the conditions that to them merited testing or termination. These findings have implications for obtaining informed consent.     

How do women of diverse backgrounds value prenatal testing outcomes?

OBJECTIVES: To describe women's preferences for prenatal testing outcomes and to explore their association with sociodemographic characteristics and attitudes. METHODS: We conducted a cross-sectional study of 584 racially/ethnically and socioeconomically diverse pregnant women aged 16 to 47 years recruited from 23 San Francisco Bay Area practices. We assessed preferences for 12 potential prenatal testing outcomes using the time trade-off metric for all outcomes and the standard gamble metric for two outcomes. Preferences were calculated on a scale of 0 (death) to 1 (perfect health). Participants also completed a sociodemographic and attitude survey. RESULTS: Highest preference scores were assigned to outcomes resulting in the birth of a chromosomally normal infant (mean = 0.91-0.93; median = 0.99-1.00). Lower scores were obtained for outcomes involving pregnancy loss (mean = 0.69-0.87; median = 0.76-0.92), which were correlated with attitudes regarding miscarriage, pregnancy termination, and Down syndrome. The lowest scores were assigned to Down syndrome-affected births (mean = 0.67-0.69; median = 0.73-0.75), which also were correlated with attitudes toward Down syndrome. We did not find a statistically significant relationship between participants' preference scores and age. CONCLUSION: Preferences for prenatal testing outcomes vary according to the pregnant women's underlying attitudes about pregnancy loss and Down syndrome, and not according to her age. Current age/risk-based guidelines should account for individual variation in patient preferences.     

Attitude of at-risk subjects towards preimplantation genetic diagnosis of alpha- and beta-thalassaemias in Hong Kong

OBJECTIVES: The aim of the study was to assess whether preimplantation genetic diagnosis (PGD) was an acceptable alternative to prenatal diagnosis in couples at risk of giving birth to a child with alpha- or beta-thalassaemia in an Asian population. METHODS: An information leaflet was distributed to the women at risk. They were asked to complete a questionnaire after having an interview with a designated investigator. RESULTS: A total of 141 valid questionnaires were analysed; 82.3% of the women considered PGD either the same or better than conventional prenatal diagnosis. Women with an affected child or a subfertility problem were more willing to accept PGD and to undergo this procedure in their future pregnancies. Their main concern about PGD was damage to the embryo during the PGD procedure. The most important perceived advantage of PGD was avoidance of termination of an affected pregnancy. CONCLUSIONS: PGD is an acceptable alternative to conventional prenatal diagnosis in women at risk of giving birth to a child with alpha- or beta-thalassaemia in an Asian population. This is particularly true in women with a subfertility problem and in women who already have an affected child.     

Prenatal diagnosis of beta-thalassaemia in Pakistan: experience in a Muslim country

A service for prenatal diagnosis of beta-thalassaemia was introduced in Pakistan in May 1994. Two renowned Islamic scholars, consulted before the service was introduced, ruled that a pregnancy can be terminated if the fetus is affected by a serious genetic disorder, and if termination is before 120 days (17 weeks) of gestation. During the first 3(1/2) years of the service 300 couples requested the test. Almost all the couples had been informed by their treating doctors. Most diagnoses were made between 10 and 16 weeks of gestation, and only 15 (5%) were reached after the 16th week. DNA analysis was by the amplification refractory mutation system (ARMS). A multiplex ARMS was developed in which three primer combinations identified the mutations in 91.5% of the couples. In 13 couples (4. 3%) linkage analysis was required for the fetal diagnosis. In 47/53 (88.7%) women carrying an affected fetus the pregnancy was terminated. In six cases it was declined principally on religious grounds. Postnatal confirmation of the prenatal diagnosis was possible in 117 unaffected children. One year after the start of the service, interviews with 141 couples with an affected child showed that 72% knew of the availability of prenatal diagnosis. Thirty-two of the informed couples had had a pregnancy, but only 18 (56%) used prenatal diagnosis. The main reasons for non-utilization of prenatal diagnosis were the cost of the test and fear of undergoing the test, though some gave no clear explanation. This study demonstrates that prenatal diagnosis is feasible and acceptable in a Muslim country such as Pakistan.     

The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major

OBJECTIVES: Religion is believed to have a significant impact on individuals from minority ethnic groups when making decisions about prenatal genetic screening, prenatal diagnosis and termination of pregnancy. This study aimed to explore the views of individuals from South-Asian and African-Caribbean communities towards termination of pregnancy for sickle cell disorders and thalassaemia major and the influence of (1) faith and religion, (2) perceived severity of the conditions, and (3) religious and community leaders. METHODS: The study explored the views of (1) individuals from four faith communities (Pakistani Muslims, Indian Hindus, Indian Sikhs, African-Caribbean Christians), using eight focus groups, and (2) parents of children with sickle cell disorders and thalassaemia major, using two focus groups and three interviews. RESULTS: Participants' accounts suggest that they generally considered religion and faith as an important factor in the decision-making process, but the perceived severity of the condition would play a more important role. Religious and community leaders were believed to have little role to play in the decision-making process. CONCLUSION: The findings emphasise the importance of recognising diversity within different faith groups and moving away from stereotypical views based on people's ethnicity or religion, and to consider the beliefs and preferences of individuals.     

Risk of neural tube defects in the offspring of thalassaemia carriers in Hong Kong Chinese

The risk of having an offspring with neural tube defect is negatively correlated with early pregnancy maternal folate levels. Thalassaemia carriers often have subnormal folate levels. We postulate that their offspring may be at increased risk of having neural tube defect. We retrospectively reviewed the records of 1961 Chinese women referred to a tertiary centre for prenatal diagnosis between January 1997 and August 1998. Women with a mean corpuscular volume greater than 80 fl were assumed not to be alpha-thalassaemia-1 or beta-thalassaemia heterozygotes. alpha- and beta-thalassaemia heterozygotes were diagnosed by haemoglobin studies. Of the 1961 women studied, pregnancy outcome was not available in 20 and thalassaemia screening was not available in 109 and these were excluded from the final analysis. Two-hundred-and-six women were alpha-thalassaemia-1 heterozygotes, 102 women were beta-thalassaemia heterozygotes and one woman had HbE disease. Three alpha-thalassaemia carriers and one beta-thalassaemia carrier had a pregnancy affected by anencephaly (odds=1:76). In the 1523 non-carriers, five pregnancies were affected by spina bifida (odds=1:304). The odds ratio (95 per cent confidence interval) for neural tube defects in the alpha- and beta-thalassaemia carriers was 3.99 (1.07 to 14.94; p<0.05, Chi-square test). Because of the small number of affected pregnancies studied, the finding needs to be substantiated by a larger series. If the increased risk is genuine, women need to be screened for thalassaemia before conception and the thalassaemia carriers should be given periconceptional folate supplement to reduce the occurrence of neural tube defects.     

To know or not to know – parents’ attitudes to and preferences for prenatal diagnosis

Objective: To highlight expectant parents’ attitudes concerning prenatal diagnosis, what the parents wish to know and what they chose not to know about their unborn baby, also in what form and to what extent they wish for prenatal diagnosis. Background: Parents have to make decisions concerning prenatal diagnosis. Screening programmes change rapidly and there is a need for parental influence on this development. Methods: An interview study with 10 women in late pregnancy and six partners. Results: The main categories ‘A time for preparation’ and ‘A lot but not everything’ included the parents’ positive attitudes towards prenatal diagnosis, especially if it could be carried out in early pregnancy and was of help for the baby, but also their negative attitudes toward information about possible future diseases that could not be prevented and towards invasive diagnosis. The parents had confidence in the caregivers’ offers of screening programmes, but described their own attitudes as changing from before pregnancy, when newly pregnant and after their ultrasound examination. The parents described themselves as partly lacking knowledge about what the existing options for prenatal diagnosis involved. Conclusions: There is a great need for competent caregivers to inform the parents-to-be about the different methods for fetal diagnosis available to them and also what information the different methods can give. Partners need to be involved in the decision-making process.     

Are pregnant Australian women well informed about prenatal genetic screening? A systematic investigation using the Multidimensional Measure of Informed Choice

BACKGROUND: Ethical practice requires that decisions to participate in medical care be well informed. Investigations into prenatal genetic screening for Down syndrome have assessed women's knowledge but have not examined whether being well informed about the potential consequences of screening, such as subsequent diagnostic testing, diagnosis and termination, is associated with psychological distress for women. AIMS: To assess informed choice to participate in second trimester maternal serum screening (2MSS) in pregnant women using a validated measure and to compare anxiety levels in women who were well informed versus poorly informed. METHODS: A prospective cohort study where pregnant women completed the Multidimensional Measure of Informed Choice and the Hospital Anxiety and Depression Scale immediately prior to the offer of 2MSS. Follow-up questionnaires assessing psychological symptomatology were completed at 20 and 30 weeks gestation. RESULTS: Only 37% of decisions were informed; those who participated in screening were more likely to have made an informed decision than those who did not (P = 0.01); 31% did not know that miscarriage was a possible consequence of diagnostic testing subsequent to an increased risk screening result and only 62% correctly identified that termination of pregnancy would be offered if Down syndrome were to be diagnosed. Short-term anxiety levels in those who were well informed were not significantly different from those who were poorly informed (P = 0.14). CONCLUSIONS: Health promotion strategies, which are readily applicable in clinical settings and address diverse learning needs and attitudes of pregnant women, are needed. The impact of antenatal screening on other dimensions of pregnancy psychology remains to be investigated.     

Termination of pregnancy by a dilatation-evacuation technique to obtain placental tissue for DNA analysis

In 57 patients, following prenatal diagnosis of a fetus affected by beta-thalassaemia major, we terminated the pregnancy by dilatation and evacuation. In 19, we have already performed DNA analysis to evaluate the feasibility of prenatal diagnosis in a subsequent pregnancy.     

Reproductive behaviour and prenatal diagnosis following genetic termination of pregnancy in women of advanced maternal age.

One hundred and fifty-one women of advanced maternal age who underwent genetic termination of pregnancy (TOP) were studied for their reproductive behaviour and the type of procedure for prenatal diagnosis in a subsequent pregnancy. A total of 59 women (39 per cent) had a further pregnancy. In all continuing pregnancies prenatal diagnosis was performed, of which 75 per cent consisted of chorionic villus sampling (CVS). Reproductive behaviour following a genetic termination was negatively correlated with maternal age and parity. Both reproductive behaviour and the choice to undergo a diagnostic procedure in the next pregnancy were independent of the type of diagnostic procedure in the previous affected pregnancy.     

Newly delivered women's evaluation of personal health status and attitudes towards sickness absence and social benefits

BACKGROUND: Unexpectedly high rates of sickness absence have been observed among pregnant women. No clear medical causes for illnesses reported as the basis for sick leave have yet been identified with certainty. An explanation proposed is the pregnant women's own attitudes towards their own states of well being during pregnancy. The aim of this study was to investigate the validity of this hypothesis. METHODS: All of the 384 women who were delivered at the University Hospital during a 2-month period were asked to answer a questionnaire anonymously. Information was sought concerning sickness absence and the use of parental benefits. In addition, questions were asked about working conditions and about each mother's own estimate of her level of 'well being'. The women's attitudes towards work absence due to illness and towards social benefit programs were registered. RESULTS: Forty-three per cent of the women stated that they had been on sick leave during pregnancy. The main reason for sick leave was reported back pain. Seventy-four per cent of the women who were on sick leave stated, nevertheless, that they had been in 'good' or 'excellent' health during pregnancy. Of the 149 women who did not take sick leave, 10 reported being in 'bad' or 'very bad' health during pregnancy. 4.3% of the women stated that they had considered themselves to be ill due to an obstetric condition. CONCLUSION: In addition to actual disease and severe discomfort, certain social conditions and attitudes as well, are likely to explain the increase of pregnant women on sick leave.     

Attitudes toward the acceptability of reasons for pregnancy termination due to fetal abnormalities among prenatal care providers and consumers in Israel

OBJECTIVES/BACKGROUND: Current prenatal diagnostic abilities confront parents and health professionals with complicated issues regarding termination of pregnancy (TOP) due to fetal abnormalities. 1.To assess and compare attitudes of consumers (women) and providers (health professionals) of prenatal care regarding TOP due to fetal abnormality.2.To identify factors related to these attitudes. METHODS: The study was conducted in southern Israel. Consumers (596) were interviewed by phone 5-8 weeks postpartum. Health professionals (351) filled out a self-administrated questionnaire. RESULTS: More than half of the interviewees approved of TOP due to mental retardation, death during infancy, severe physical disability and very low quality of life (in descending order). For each condition, care providers were significantly more supportive of TOP than women, and had far fewer hesitations. The hierarchy of 'TOP acceptability' was similar in both populations. Factors associated with women's attitudes were degree of religiosity, Ashkenazi origin and country of birth. Two approaches toward TOP were identified: 'consistent' versus 'ad hoc'. CONCLUSIONS: Prenatal care providers and consumers differ in their attitudes regarding acceptability of reasons for TOP. Care providers offering prenatal tests should be aware of their patients' attitudes, in order to guide informed decisions regarding the tests.     

Attitudes towards termination of pregnancy among Hong Kong Chinese women attending prenatal diagnosis counselling clinic

OBJECTIVE: To investigate the attitudes towards termination of pregnancy (TOP) among Hong Kong Chinese women attending the prenatal diagnosis counselling (PDC) clinic under three circumstances: (1) normal fetus, (2) fetal chromosomal anomalies, and (3) fetal abnormalities diagnosed after 24 weeks of gestation, and to determine the association between the attitudes and demographic factors. METHODS: One hundred and twenty-two women were interviewed using a structured questionnaire. RESULTS: Over 50% of our women viewed it as their right to choose an abortion in early pregnancy and only 28.7% agreed that the doctor has the right to make the final decision. Approximately 90% would choose TOP for lethal chromosomal abnormalities and Down syndrome while about 50% would do so for Klinefelter or Turner syndromes. Over 80% were of the opinion that women should be given the right to choose TOP for lethal congenital malformation as well as for Down syndrome after 24 weeks of gestation. This figure dropped to 55.7% for non-lethal structural malformation that requires postnatal treatment. Religious background was a significant factor for a negative attitude towards TOP. CONCLUSION: Our data suggest that our women who attended the PDC clinic had an open attitude towards TOP for fetal abnormalities in general.     

Ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome: a theoretical framework

OBJECTIVE: To develop a theoretical framework for analysing ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome. METHODS: We applied Weinstein's Precaution Adoption Process (PAP) Model to the decision of whether or not to participate in prenatal screening for Down syndrome. The prenatal screening stage model was specified by reviewing the empirical literature and by data from seven focus group interviews with Dutch, Turkish and Surinamese pregnant women in the Netherlands. RESULTS: We identified 11 empirical studies on ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome. The focus group interviews showed that almost all stages and determinants in the stage model were relevant in women's decision-making process. However, there were ethnic variations in the relevance of determinants, such as beliefs about personal consequences of having a child with Down syndrome or cultural and religious norms. DISCUSSION: The prenatal screening stage model can be applied as a framework to describe the decision-making process of pregnant women from different ethnic backgrounds. It provides scope for developing culturally sensitive, tailored methods to guide pregnant women towards informed decision-making on participation or non-participation in prenatal screening for Down syndrome.     

Are counsellors' attitudes influencing pregnant women's attitudes and decisions on prenatal screening?

OBJECTIVES: It is generally recognised that choices concerning treatment or screening should be people's own, autonomous decisions. However, in the context of genetic counselling, many studies found that counsellors deviate from nondirectiveness, or that subjective norm influences behaviour. The present study aimed to investigate whether prenatal counsellors (midwives, gynaecologists) influence pregnant women's decisions and their attitudes regarding prenatal screening. It was hypothesised that uptake rates and attitudes would be associated with the counsellor's attitude toward prenatal screening. METHODS: Pregnant women attending their midwifery or gynaecology practice were asked to fill out postal questionnaires before and after they were offered prenatal screening for Down syndrome. Their prenatal counsellors also filled in a questionnaire. These questionnaires assessed attitudes toward prenatal screening and background variables. The study sample consisted of 945 pregnant women, being guided by 97 prenatal counsellors. RESULTS: Multilevel regression analyses revealed that neither uptake rates, nor attitude toward prenatal screening were significantly predicted by counsellors' attitudes toward prenatal screening. CONCLUSION: It is suggested that the advice these pregnant women were reported to have received, should rather be interpreted as an indication of shared decision-making and social support than of social pressure and undesired influence.     

A survey of the oral health knowledge and practices of pregnant women in a Nigerian teaching hospital

To describe the self-reported oral health knowledge, attitudes and oral hygiene habits, among pregnant women receiving antenatal care at the Lagos State University teaching Hospital (LASUTH). A cross-sectional questionnaire-based survey was conducted at the LASUTH antenatal clinic during the period January - June 2008. Most of the respondents demonstrated a reasonable level of oral health knowledge and positive attitudes towards oral health. However, there were gaps in the oral health knowledge of the women surveyed. The relationship between the level of oral health knowledge and ethnicity (p=0.856), level of education (p=0.079), age category (p=0.166), and trimester of pregnancy (p=0.219) were not statistically significant. In addition, the women's knowledge and attitude towards oral health was not reflected in their oral hygiene practices. There is a need to provide oral health education for pregnant women during antenatal care in order to highlight the importance of good oral health in achieving good health for both the mother and her baby.     

Psychological aspects of pregnancy and prenatal diagnostics

BACKGROUND: Pregnancy is an extraordinary event with an impact on family life and demands a process of adaptation for the future parents. Diagnostic, as well as the therapeutic developments of prenatal diagnosis have resulted in great technical advances in the medical attendance of pregnant women in the past twenty years. Beside the medical aspects, the psychological impact on a pregnant woman and the father-to-be has to be taken into meticulous consideration. METHODS AND DISCUSSION: The expectations of prenatal diagnostics are focused towards a reducing an uncertainty concerning the pregnancy. Most pregnant women who decide to undergo prenatal diagnostics wish to confirm their vision of a healthy child or to exclude the fear that it could be unhealthy. By identifying and pointing out an unhindered foetal development, the pregnant women hope to gain security, clarity and conciliation for the course of their pregnancy. Positive implications--in particular of an ultrasound--on the firm relationship with the unborn child as well as the attitude to the pregnancy, are discussed. CONCLUSION: Carefully preparation of the parents for the diagnostic procedures, especially where expectations, anxieties and uncertainties exist, is highly recommended.