Parents' needs after ultrasound diagnosis of a fetal malformation: an empirical deficit analysis

Abstract

We studied 56 pregnant women and 24 partners after ultrasound examination in the 18-24h gestational week revealed a fetal malformation. The subjects were followed through the process of examination, information sharing and counselling about the option of terminating the pregnancy. Regardless of sociodemographic variables or attitude towards the pregnancy, the diagnosis was always traumatic. A detailed critique of the physician's behavior and function emphasized his important role in the process of coming to terms with the malformation and gave clear indications of the positive expectations parents had. The affected patients expected the role of the professionally competent expert to be combined with that of the empathetic approachable counsellor, whose ste-by-step explanation would allow them to decide for themselves whether to terminate the pregnancy. The partner's participant was an essential aid to adjustment. It remains to be seen to what extent the functions of the doctor are realistic and justified.

Psychological effects of fetal diagnoses of non‐lethal congenital anomalies on the experience of pregnant women during the remainder of their pregnancy

“…Antenatal diagnoses of congenital anomalies, including lethal congenital anomalies, [1][2][3][4] uncorrectable non-lethal congenital anomalies, [5][6][7] and correctable non-lethal congenital anomalies that can be treated surgically after delivery, [8][9][10][11][12][13][14] have all been shown to cause psychological trauma in pregnant women. Faced with psychological distress, pregnant women who receive these diagnoses employ a variety of coping strategies.…”

Exploring Adoption with Clients: The Need for Adoption Education Within the Genetic Counseling Profession

“…However, it has been suggested that a thorough knowledge of one's options, when combined with accurate resources, can lessen an individual's sense of helplessness (Kaunitz et al 1987), and a common coping strategy in difficult situations consists of information-gathering (Garvin and Kim 2000). The importance of providing as much accurate information as possible at the time of diagnosis has been emphasized as one strategy to enable expectant parents to consider all options and make an informed decision (Carroll et al 2000;Lalor et al 2007;Schuth et al 1994). This strategy has been supported by numerous studies researching earlier detection of congenital disorders (e.g., Canick et al 2006;Saltvedt et al 2006).…”

“…Genetic counselors, obstetricians, maternal-fetal medicine sub-specialists, midwives and health center social workers have the responsibility to remain unbiased and nondirective when providing information to clients (Perry and Henry 2009). Because these health professionals are often the first resources that expectant parents encounter after a fetal diagnosis, the impact that genetic counselors and other health professionals have on parental response and decision-making has been demonstrated to be so great as to potentially influence whether clients decide to terminate or to continue their pregnancy (e.g., Schuth et al 1994). Perhaps this placement of responsibility on others for the decision to terminate is, in fact, a coping mechanism for dealing with the stress and grief associated with an emotionally difficult choice, as has been shown in some studies (e.g., Bijma et al 2005;Sandelowski and Jones 1996).…”

“…Despite health care profession codes of ethics that articulate the necessity of presenting information in a nondirective manner, a considerable number of expectant parents have reported the professionals they encountered when faced with a prenatal diagnosis openly expressed negative views, while seemingly promoting termination of the pregnancy (Abramsky et al 2001;Helm et al 1998;Schuth et al 1994;Skotko 2005a). Relatedly, some studies lend support to the notion that medical caregivers may question why expectant parents choose to undergo prenatal testing when termination is not an option for them (Hunt et al 2005;Sandelowski and Jones 1996).…”

Cuidados paliativos em medicina fetal

“…Independente da gravidade da doença, o diagnóstico de malformação fetal impacta a gestante e seus familiares, sendo recorrente alterações emocionais como ansiedade e preocupações 5,6,7,8 . Dentre os possíveis impactos e sentimentos gerados pela presença de malformação fetal, Andrade 9 descreve sentimento de tristeza, sofrimento pela possibilidade da perda do filho, sensação de culpa pela malformação, preocupação com a possibilidade do filho sofrer e com a reação de outros filhos diante da descoberta da malformação fetal de alta mortalidade.…”