Prenatal diagnostic techniques both enable and force women and couples to make decisions about whether to continue a pregnancy where the fetus has an anomaly. Few studies have explored the decision-making and bereavement processes of women who terminate a desired pregnancy after the discovery of a fetal anomaly. This reports the qualitative results of a study designed to explore these processes while placing them within the context of the societal milieu. Findings are reported as themes that emerged from the 30 intensive interviews conducted with women at varying stages after this experience. These include mythical expectations based on denial that anomaly could occur, misconceptions about the nature of prenatal testing and inaccurate expectations about the experience and duration of grief. Further, the contradictory norms in society are defined as creating additional dilemmas for women as they attempt to gain support and understanding following their loss. Suggestions for how providers may assist women with their grief are incorporated.
This article examines the use of computer-mediated recruitment and email intensive interviewing in contrast to more traditional methods of data collection. Email interviewing is compared to telephone and face-to-face interviewing with the same study population utilizing the same interview guide. This allows analysis of the advantages and disadvantages of each interview format to emerge. This serendipitous comparison opportunity arose from a study of the decision-making and bereavement process of women who terminated desired pregnancies after diagnosis of a fetal anomaly. History and analysis of ethical and methodological issues related to computerized communication for research purposes is included. Although more methodological analysis (Illingworth, 2001) must occur, results suggest that computer-mediated methods allow the research to include isolated, geographically dispersed and/or stigmatized groups who are often overlooked or ignored. This is important for social work researchers who need additional research methods to collect rich data about these difficultto-access groups.
Prenatal testing is widely utilized, yet few studies have explored decision-making processes about diagnosis from the pregnant woman's standpoint. This qualitative, exploratory study reveals a factor not accounted for in prior research geared toward associations between demographic categories and decisions. The 30 women in this study demonstrated a three-part decisional trajectory that included an effort to collect information about the challenges a potential child with their particular diagnosis might experience. They then assessed their social context, familial supports, and resilience as a couple. A final yet crucial step was an assessment of the woman's own capacity to provide this level of care within her unique context. Few genetics teams have a member with biopsychosocial expertise and time who can help the woman/couple reflect on the situated context of the decision and its impact. Better care strategies to support women and couples through this experience are warranted.
It is difficult to hear the voices of women describing their experiences of perinatal health care in the United States. This article reports results from interviews with 30 women about their experience of pregnancy termination for fetal anomaly (TFA) and their encounters with the medical system during the diagnosis through the aftermath of termination process. The ways researchers inadvertently silence women's voices are analyzed. Themes emerged from the interviews, including the role of preparedness, access and barriers to care, and the importance of empathic compassion by the provider. Additionally, women give relatively unprocessed advice and feedback to the varied disciplines of the medical care team.
Genetic counselors frequently are called upon to assist patients in understanding the implications of prenatal testing information for their pregnancies and their family's lives. The introduction of highly sensitive testing such as chromosomal microarray has generated additional kinds of uncertainty into the prenatal period. Counselors may feel uncomfortable or inadequately prepared to engage in discussions with prospective parents who are faced with making critical, and timely, decisions about a pregnancy based on uncertain information. As highly sensitive prenatal testing becomes routine in prenatal care, counselors may be in search of approaches to prenatal counseling, as well as specific skills to approach, engage with, and help families find resolution in such challenging circumstances. To assist genetic counselors, we describe practice skills and provide language for approaching conversations with prospective parents. When clinicians regularly provide care to patients and families making life-altering decisions under conditions of significant uncertainty, discomfort is common and compassion fatigue is likely. We make recommendations directly to the genetic counselor working in reproductive and perinatal settings to enhance training and self-care and to decrease discomfort in balancing the scientific- and art- demands of genetic counseling.
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