Genetic counseling gone awry: miscommunication between prenatal genetic service providers and Mexican-origin clients.

Amniocentesis, and other prenatal genetic tests, have become a well-established feature of modern prenatal care. But these tests place a considerable decision-making burden on the expectant mothers to whom they are offered: the genetic issues involved are complex and the appropriate course of action sometimes ambiguous. Genetic counseling aims to help pregnant clients make an informed decision about prenatal genetic tests. But the clientele of prenatal genetic counseling has changed significantly in the years since the practice was established. Clients were once a self-selected group of women well-informed about the genetic services being offered. In contrast, clients now include an increasing number of women, particularly ethnic minority women, who had no prior knowledge of genetic testing, but were found to be at risk of birth defects after routine screening. Little is known about how well genetic counseling serves the needs of this new clientele. This paper investigates the possibility that miscommunication between genetic counselors and their Mexican-origin clients contributed to the higher rates of amniocentesis refusal. We interviewed 156 pregnant Mexican-origin women who screened positive on a blood test routinely offered in California to detect birth defects. We also observed the genetics consultations of a sub-sample of the women. We identified five common sources of miscommunication: (1) Medical jargon; (2) The non-directive nature of counseling; (3) The inhibitions of counselors stemming from misplaced cultural sensitivity; (4) Problems of translation; (5) Problems of trust. We found that many Mexican-origin women are skeptical of genetic testing and do not easily surrender their own lay theories about the causes of their condition. In order to dislodge the misunderstandings of their clients, counselors must give clients the opportunity to air their own views, however contrary to those of genetics professionals these may be.

Ethnicity, bioethics, and prenatal diagnosis: the amniocentesis decisions of Mexican-origin women and their partners.

Bioethical standards and counseling techniques that regulate prenatal diagnosis in the United States were developed at a time when the principal constituency for fetal testing was a self-selected group of White, well-informed, middle-class women. The routine use of alpha-fetoprotein (AFP) testing, which has become widespread since the mid-1980s, introduced new constituencies to prenatal diagnosis. These new constituencies include ethnic minority women, who, with the exception of women from certain Asian groups, refuse amniocentesis at significantly higher rates than others. This study examines the considerations taken into account by a group of Mexican-origin women who had screened positive for AFP and were deciding whether to undergo amniocentesis. We reviewed 379 charts and interviewed 147 women and 120 partners to test a number of factors that might explain why some women accept amniocentesis and some refuse. A woman's attitudes toward doctors, medicine, and prenatal care and her assessment of the risk and uncertainty associated with the procedure were found to be most significant. Case summaries demonstrate the indeterminacy of the decision-making process. We concluded that established bioethical principles and counseling techniques need to be more sensitive to the way ethnic minority clients make their amniocentesis choices.

Abnormal Pap screening among Mexican-American women: impediments to receiving and reporting follow-up care.

PURPOSE/OBJECTIVES: To understand impediments to receiving and reporting timely follow-up care for abnormal Pap tests among Hispanic women. DESIGN: Descriptive, qualitative. SETTING: A federally funded cancer screening clinic in urban South Texas. SAMPLE: 11 Mexican/Mexican-American women over 40 years old who appear in clinic records as "lapsed" in follow-up and 5 clinic staff members. METHODS: Semistructured, qualitative interviews regarding staff and patient concepts about cancer, cancer screening, and follow-up. Abstraction of patients' clinic charts. MAIN RESEARCH VARIABLES: Factors associated with women being classified as "lapsed" in follow-up care for abnormal Pap tests. FINDINGS: Only two patients had no follow-up, while nine eventually had follow-up, either elsewhere or after several missed appointments. Contrary to expectations, poor knowledge, lack of social support, and lack of availability of care were not factors impeding follow-up. Reluctance to be examined by a male practitioner, lack of flexibility in scheduling clinic appointments, and poor staff communication regarding appointments and the seriousness of the condition were all influences negatively affecting follow-up behavior. Nevertheless, these women went to significant lengths to comply with follow-up recommendations. CONCLUSIONS: The classification of patients' follow-up behavior as "lapsed" was not attributable to culturally based beliefs and attitudes, nor lack of knowledge and motivation, but was primarily the result of institutional features such as scheduling and record-keeping practices and policies. IMPLICATIONS FOR NURSING PRACTICE: More thorough evaluation of actual behaviors would ensure more accurate assessment of follow-up behavior in this group. More female practitioners, better communication of appointments and of the seriousness of the condition, and more flexible scheduling options would reduce the difficulty these Hispanic patients encountered in having timely follow-up care.

The effects of ethnicity, education and an informational video on pregnant women's knowledge and decisions about a prenatal diagnostic screening test.

Prenatal screening for genetic disease and developmental disabilities is rapidly becoming a routine part of the management of low-risk pregnancies. Yet research on how to best inform pregnant women about these tests and their special ethical entailments remains sparse. We asked 130 low-risk pregnant women of diverse ethnic and social class backgrounds a series of questions about a prenatal test they had been offered within the previous 3 months. All had been given an informational booklet about the test at the time it was offered; about half also saw a video. We found that neither group of women retained much of the information they had received about the prenatal screening but that those who saw the video remembered more. Information-retention also varied significantly by ethnicity and level of education.

Plants used for reproductive health in Oaxaca, Mexico.

PIP: Despite the existence of 2 government health centers in Mexico's San Francisco township, the use of herbal remedies for the treatment of reproductive health problems and the management of reproduction is almost universal. An ethnographic study conducted in 1980-1981 of 180 women and 126 women investigated use of specific herbal remedies in this highland area. The largest number of reproduction-related medicinal plants used San Francisco are for postpartum recovery. In fact, 80% of the women interviewed reported using only herbal remedies after their last delivery. These remedies are relied on to restore lost blood, heal the birth scar, and stop bleeding. Of the 40% of respondents who reported postpartum hemorrhaging, 70% used herbal remedies. Several of the plants used to treat menorrhagia and hemorrhaging are also used for infertility. The infertility remedies are believed to cleanse the blood and uterus, heal or strengthen the back so the fetus can adhere, help the womb retain the fetus, and cool the blood. Both infertility and miscarriage are attributed to incomplete postpartum recovery. Another large group of medicinal remedies is employed to speed labor or ease labor pains. These remedies are thought to stimulate blood flow or uterine contractions. An additional 15 plants are used to prevent or terminate pregnancy. The mechanism of action in these case is believed to be to both warm the blood to facilitate its flow and irritate the uterus so it will evacuate its contents. Reliance on these remedies derives from Chinantec ethnomedical understandings. Given the persistence of use of herbal remedies in many communities in the Third World, research is needed on their safety and efficacy.^ieng

Chemical bases for medicinal plant use in Oaxaca, Mexico.

Fifty-eight medicinal plants used for the management of reproduction and the treatment of women's reproductive health problems in an indigenous community in southern Mexico are described. The efficacy of these plants is assessed according to both community members' understandings of the therapeutic effects they seek and the standards of conventional Western medicine. The majority of the plants contain chemicals which would appear to enable them to accomplish their intended effects in either or both the popular and the conventional medical systems.

The management of early pregnancy: Colombian folk concepts of fertility control.

PIP: Case materials and interviews conducted in 1975 in Cali, Colombia indicate that many women take advantage of the diagnostic uncertainty of early pregnancy to practice pregnancy control using folk remedies, pills or commercial preparations. The 108 women in the sample ranged in age from 17 to 52 years, with mean age 31.1, and all had had at least 1 unwanted pregnancy. Most were literate and had substantial urban experience. More than 60% of the women had tried some contraceptive method at some time, but only 42% were using a method at the time of the interview. Voluntary abortion is illegal, dangerous, expensive and risky in Colombia. Women who employ neither contraception nor abortion regulate their fertility by utilizing the ambiguity about when a pregnancy begins. Women in Cali recognize an intermediate state between being pregnant and not being pregnant, which the author calls "possibly pregnant." The 3 states are described, examples are provided, and the implications of this belief-complex are explored. Fertility regulation is shown to be basic to the Colombian folk culture, with women exercising a degree of control over childbearing. Ambiguity in the diagnosis of the pregnancy allows women to undo unwanted pregnancies while escaping the guilt and other sanctions associated with the concept of abortion. Suggestions for further research are offered.^ieng

Abortion decision making: some findings from Colombia.

The reasons why some women seek to terminate an unwanted pregnancy, while others do not, were investigated in interviews with 108 women in Cali, Colombia (where abortion is illegal but reportedly widespread). All the women in the study had experienced an unwanted pregnancy, and in more than half the cases one major or several minor attempts were made to end it. The prospects for economic support from the father of the child emerged as the most important factor in decision making. Single women, separated women, and women in unions that seemed in danger of dissolving were most likely to take strong steps to terminate the unwanted pregnancy.