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Pregnant Women's Attitudes and Knowledge in Relation to Access to Serum-Alpha-Fetoprotein Test
Abstract
Serum-Alpha-Fetoprotein (se-AFP) screening is a controversial issue in Sweden. In some areas the test has never been offered, in others it is routinely offered to all pregnant women and there are areas where the se-AFP test has been offered but is no longer available but for very special indications. This pseudoexperimental situation was used to analyze the effects of different information environments on attitudes to and knowledge of testing procedures at the antenatal clinics, especially the se-AFP test, and anxiety of malformations. Consecutive series of pregnant women in these three areas filled in questionnaires at their first visit, in the 22nd to 24th, and the 32nd to 35th weeks of pregnancy, and after delivery. The attitudes to prenatal screening were most positive in the routine screening area and most negative in the area which previously but no longer offers the test. The level of knowledge was somewhat higher in the routine screening area at the first visit to the clinic and increased substantially, especially in the routine screening area.
... Such results would appear to indicate important national, regional and local differences (U. K. Collaborative Study, 1977;Bennet et al., 1980;Kyle et al., 1988;Berne-Frommel et al., 1984;Marteau et al., 1989;Byrne-Essif et al., 1988;Roberts et al., 1983;Doran et al., 1987;Gardner et al., 1981;Madlon-Kay et al., 1992;Sikkink, 1990;Sanden and Bjurulf, 1988). ...
Despite considerable concern of bioethicists, disabilities rights activists, feminists and others about the spread of prenatal diagnostic technologies, their routine acceptance in many parts of the world continues at a rapid pace. Yet, there is wide variation by country and region in rates of acceptance of prenatal diagnosis. We draw on John McKinlay's model of how a medical innovation becomes routinized to explore the circumstances that led to the widespread use of one prenatal diagnostic screen-the maternal serum alpha fetoprotein (MSAFP) test for the detection of neural tube defects and other developmental disabilities. As predicted by McKinlay's model, analysis of published data suggests that strong institutional or provider support is the best predictor of women's level of MSAFP test acceptance. Data collected at a health maintenance organization in California illuminate the processes through which medico-legal and institutional forces affect the use of MSAFP screening. By examining the language women use to talk about MSAFP screening, we show how providers also shape women's understandings of the meaning and purpose of MSAFP screening. These data ultimately shed light on how the very ethical issues which concern critics of prenatal diagnosis become obscured in the processes by which this screening test becomes accepted as routine.
The aim of the study was to describe the opinion of pregnant women who had accepted or declined an alpha-fetoprotein test (AFP) not only on AFP-screening in general, but also on whether every pregnant woman should be offered amniocentesis (AC)/chorion villus sampling (CVS) and an ultrasound scan for fetal malformations. An additional aim was to describe pregnant women's attitudes concerning continued research in the prenatal field. The study was performed as a questionnaire study in two regions over a one-year period from October 1, 1988 to September 30, 1989. Results are based on answers from 3331 women who had taken an AFPtest and 336 women who had declined the offer of a test A total of 79% of the women thought that an AFP-test, 70% that an ultrasound scan for fetal malformations and 26% that AC or CVS should be offered to all pregnant women. Fifty-nine percent of the women were positive towards continued research in the prenatal field. Women who had had an AFPtest were generally much more positive towards screening and research than women who had declined, who were generally against. Women who had left school without a high school degree were on average more positive towards the screening issues than women who had this degree. In conclusion, the results obtained in this study strongly suggest that women's attitudes are very dependent on how the prenatal screening programme is already organized in their local area.
This chapter begins with a discussion of the barriers to adequate informed consent. It then presents examples that show how public health and genetics might come together, either in research or in clinical programs. The examples cover prenatal genetic screening, newborn screening programs, and the ways in which all genetics research inevitably involves families. It is argued that in designing modes of obtaining informed consent, explicit consideration must be given to the structural forces that may make truly informed consent difficult in each particular situation. Moreover, it must be realized that these structural forces have the potential to increase in importance and impact when coupled with any program that purports to have the public's health at stake.
Reviews psychological studies that address 3 key issues arising from the use of prenatal testing for fetal abnormalities. These are the factors determining whether women undergo these tests; the impact of undergoing these tests; and the social implications of prenatal testing. Both the advantages and disadvantages of prenatal testing are described. It is cautioned that the widespread use of prenatal testing may foster a general attitude that all birth abnormalities are preventable. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
To assess the information given to women during a maternal serum screening (MSS) programme, we prospectively applied a questionnaire to 504 pregnant women attending for amniocentesis after a screen-positive result. The survey based on 200 usable questionnaires (39·7 per cent of our study population) showed that MSS was imposed as mandatory by 41·5 per cent of providers and done without their patients' agreement by 16 per cent. After release of the test results, 6·5 per cent of women believed that they were carrying a Down syndrome-affected fetus and 21·5 per cent thought the risk was about 50–50. A total of 38·5 per cent of the pregnant women were not informed of the risk of miscarriage after amniocentesis and 67·5 per cent believed that there was no possibility of a false-negative result with MSS. Information given over the telephone was particularly poorly understood compared with information provided during an outcome visit, since women who learned of their test result during such a visit scored significantly higher (69 per cent) when questioned about the risk of carrying a Down syndrome-affected fetus, compared with women informed of their test results by telephone (38·7 per cent) or by letter (47 per cent). We therefore suggest routine consultation with an antenatal care professional before testing to enable pregnant women to give their informed consent to MSS. Copyright © 1999 John Wiley & Sons, Ltd.
This study analyzes attitudes which influence women in their decisions to accept or decline a serum-Alpha-FetoProtein (se-AFP) test. The survey covers all women who have visited antenatal clinics offering the se-AFP test in a given area during a specified period. All in all, the pregnant women answered four questionnaires: three before and one after delivery. 19% of the women declined the se-AFP test. During pregnancy, the women who did not take the se-AFP test said that the reason was anxiety about the results of the test. Many of the women who took the test said that they wanted assurance that the child was healthy. This entails obvious ethical problems when the test is positive. The test-routine does not have a major influence in the decision-making process. A change in routines to shorten the waiting time, and a different cut-off line might influence some of the declining women to accept the test.
The aim of the study was to describe the opinion of pregnant women who had accepted or declined an alpha-fetoprotein (AFP) test, not only on AFP screening in general, but also on whether every pregnant woman should be offered amniocentesis (AC)/chorionic villus sampling (CVS) and an ultrasound scan for fetal malformations. An additional aim was to describe pregnant women's attitudes concerning continued research in the prenatal field. The study was performed as a questionnaire study in two regions over a 1-year period from 1 October 1988 to 30 September 1989. Results are based on answers from 3331 women who had taken an AFP test and 336 women who had declined the offer of a test. A total of 79 per cent of the women thought that an AFP test, 70 per cent that an ultrasound scan for fetal malformations, and 26 per cent that AC or CVS should be offered to all pregnant women. Fifty-nine per cent of the women were positive towards continued research in the prenatal field. Women who had had an AFP test were generally much more positive towards screening and research than women who had declined, who were generally against. Women who had left school without a high school degree were on average more positive towards the screening issues that women who had this degree. In conclusion, the results obtained in this study strongly suggest that women's attitudes are very dependent on how the prenatal screening programme is already organized in their local area.
The objective was to describe the development, characteristics, and initial use of an instrument for assessing knowledge about maternal serum screening (MSS). Items for a knowledge scale were selected based on a review of educational materials, the literature, and expert opinion. Items were pre-tested for comprehensibility and ambiguity in a convenience sample. After extensive pre-testing and pilot testing a 14-item scale, the Maternal Serum Screening Knowledge Questionnaire (MSSKQ) was developed. It was administered to 1084 women attending a maternal registration clinic. The overall knowledge score was compared across socio-demographic groups, and by sources of information about MSS. Mean MSSKQ scores increased with age, education, and family income, and among those reporting having an opportunity to discuss MSS and receiving written material. The MSSKQ is a reliable instrument with good content and construct validity. This tool should be valuable in assessing knowledge and level of informed consent in women receiving MSS and in evaluating the implementation of MSS programmes.
This paper presents data from the California maternal serum alpha fetoprotein (MSAFP) program in order to explore the effect and interaction of various factors, especially ethnicity, abortion history and attitudes, religion, and religiosity on MSAFP test decision. The intent is to describe which women are more likely to reject MSAFP screening and also to understand the reasons for refusal and the meanings associated with it. We obtained data on sociodemographics and reproductive history from 595 obstetrical patient charts; we conducted semistructured interviews with an additional 158 pregnant women who were European-American, English-speaking Latina, or Spanish-speaking Latina. All of the women had been offered screening within the context of California's MSAFP Program. We found that women who had never terminated a pregnancy, Spanish-speaking Latinas, and women who scored high on a religiosity scale were significantly more likely to refuse testing. However, we found that all of those factors were strongly mediated by the effects of ethnicity and acculturation, producing different patterns of association in different groups of women.
To assess the information given to women during a maternal serum screening (MSS) programme, we prospectively applied a questionnaire to 504 pregnant women attending for amniocentesis after a screen-positive result. The survey based on 200 usable questionnaires (39.7 per cent of our study population) showed that MSS was imposed as mandatory by 41.5 per cent of providers and done without their patients' agreement by 16 per cent. After release of the test results, 6.5 per cent of women believed that they were carrying a Down syndrome-affected fetus and 21.5 per cent thought the risk was about 50-50. A total of 38.5 per cent of the pregnant women were not informed of the risk of miscarriage after amniocentesis and 67.5 per cent believed that there was no possibility of a false-negative result with MSS. Information given over the telephone was particularly poorly understood compared with information provided during an outcome visit, since women who learned of their test result during such a visit scored significantly higher (69 per cent) when questioned about the risk of carrying a Down syndrome-affected fetus, compared with women informed of their test results by telephone (38.7 per cent) or by letter (47 per cent). We therefore suggest routine consultation with an antenatal care professional before testing to enable pregnant women to give their informed consent to MSS.
One hundred women who declined a voluntary α-fetoprotein screening test during early pregnancy and one hundred women who accepted the test were investigated by means of semistructured interviews with particular reference to background factors which could have influenced upon the decision making. Those who declined were, as expected, overrepresented among those opposed to legal abortion and they often showed an ambivalent or negative attitude towards prenatal diagnosis as such. These women were also more frequently legally married and active members of various religious denominations. Otherwise there were no socioeconomic, psychologic or other background factors specially associated with women who declined. The paramount individual reason given for abstaining from the test was the feeling that the test was ‘unreliable’. The personal ethical attitude, together with the current reputation of the test in society, seem to be major factors affecting the rate of participation in an AFP-screening program.
Repeated semistructured interviews with 66 singleton-pregnant women disclosed that when they were notified that they had an elevated serum AFP level, 47 per cent reacted with panic, 35 per cent with reasonable concern, and 18 per cent with denial. Three days later, these proportions had changed to 14, 21, and 65 per cent, respectively. On the latter occasion an interviewer judged that 74 per cent of the women were severely or considerably anxious about fetal malformations.
Twenty-five women who required extended investigation did not experience more strain during this period than women for whom one control serum assay sufficed. After completion of the total investigation 56 of the women did not regret that they had undergone the serum AFP test.
The present findings show that being informed about abnormal serum AFP test results induces immediate and severe though temporary emotional distress that can be alleviated by adequate medical information and reasonable psychological support.
Little is known about the effect of amniocentesis and prenatal diagnosis of genetic disease on couples undergoing such studies. A questionnaire was composed to evaluate, among other things, the reason for referral, attitudes and concerns of the pregnant woman and her husband toward prenatal study, and suggestions for improving the experience. Of 315 women referred to this unit for this purpose, 196 have had time to complete their pregnancy and were mailed the questionnaire; 157 (80%) of the latter responded. The majority of the women found the experience reassuring, would recommend it to others, and would seek it again themselves with a subsequent pregnancy.
Participants in two Tay-Sachs screening programs were generally satisifed with the organization of the tests and the results. There was no evidence of adverse impact on reproductive plans or interpersonal relations, and the respondents professed to believe in the value of screening. While the carriers discussed their condition freely with others and were no less favorable to the idea of screening than the noncarriers, about one-half of their number expressed discomfort in being told they were heterozygotes. These feelings were allayed by counseling, but there was evidence of some residual unease. It is suggested that this anxiety would be less prominent and more easily reduced if screening were done under conditions of ordinary primary medical care rather than outside the conventional system.
The purpose of this study was to assess the psychological impact of maternal serum alpha-fetoprotein screening on pregnant women with normal results and their male partners. Assessments of anxiety (as measured by the state-trait anxiety inventory) and attitudes toward pregnancy (as measured by the maternal attitude to pregnancy instrument) were conducted sequentially beginning at 16 weeks' gestation in women participating in the maternal serum alpha-fetoprotein screening with normal results and in women without access to screening. Screened subjects exhibited similar or lower levels of anxiety at each point in time as compared to unscreened subjects. In addition, they exhibited a similar or more positive attitude toward pregnancy. No differences in anxiety were observed between male partners in the two groups. Participation in screening appeared to have no adverse psychological effect on the subjects studied.
This study analyzes attitudes which influence women in their decisions to accept or decline a serum-Alpha-FetoProtein (se-AFP) test. The survey covers all women who have visited antenatal clinics offering the se-AFP test in a given area during a specified period. All in all, the pregnant women answered four questionnaires: three before and one after delivery. 19% of the women declined the se-AFP test. During pregnancy, the women who did not take the se-AFP test said that the reason was anxiety about the results of the test. Many of the women who took the test said that they wanted assurance that the child was healthy. This entails obvious ethical problems when the test is positive. The test-routine does not have a major influence in the decision-making process. A change in routines to shorten the waiting time, and a different cut-off line might influence some of the declining women to accept the test.
Individual degrees of anxiety concerning fetal malformations were assessed in early, mid- and late pregnancy by means of self-rating on visual analogue scales. Two samples of women were compared, i.e., 699 women living in an area with a well-established serum alpha-fetoprotein screening program and 239 women living in an area where such a program had never been in operation. At the beginning of pregnancy the distribution of the individual degrees of anxiety were found to be similar in both samples of women. However, in mid- and late pregnancy the anxiety in women from the screening area was found to be lower than the anxiety in women from nonscreened areas.