12 Optimizing Prenatal Support of the Mother and Family
Abstract
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Optimizing Prenatal Support of the Mother and Family Angela Mcbrien, Debra Hilton-Kamm, Lisa K Hornberger Abstract Support of the pregnant mother and her partner is a critical element in the prenatal diagnosis and management of fetal heart disease (congenital heart disease) From the moment a woman/couple are identified as possibly having a fetus with congenital heart defect, to entering the fetal cardiology clinic, through the exam, prenatal counseling, subsequent visits, and the peripartum period, care providers have to be sensitive to and actively seek out ways to mitigate the stress experienced and provide accurate and sufficient information to ensure informed consent is achieved This chapter reviews our understanding of the stress experienced by affected pregnant women and families based on the published literature, the necessary elements of and an approach to prenatal counseling, including the perceptions of physicians and families, and strategies to support the families beyond the counseling period Keywords Prenatal diagnosis; fetal echocardiography; congenital heart disease; prenatal counseling Support of the pregnant mother and her partner is a critical element in the diagnosis and management of congenital heart disease (CHD) in the fetus From the moment a woman/couple are identified as possibly having a fetus with CHD, to entering the fetal cardiology clinic, through the exam, prenatal counseling, subsequent visits, and the peripartum period, care providers have to be sensitive to and actively seek out ways to mitigate the stress experienced and provide accurate and sufficient information to ensure informed consent is achieved Probably the most important and overwhelming event for an affected family is the prenatal counseling at the time of diagnosis Counseling is a complex process, involving a multidisciplinary team of people who should have an understanding of specific issues related to fetal as well as neonatal CHD It sets the stage for the couple for making a decision regarding whether they will continue the pregnancy, a decision that will be remembered long after the patient has left the fetal program, and how the family will cope through the rest of the pregnancy and delivery of continued pregnancies Accurate and empathetic counseling fosters truly informed decision making, improves doctor-patient relationships by developing trust, reducing misunderstandings and avoiding confusion, and ultimately optimizes outcomes by ensuring parents are prepared to care for the child Every family presents with variable experiences, cultural backgrounds, beliefs, education levels, coping mechanisms, and support systems as well as varying family and financial situations These variables impact what they understand of the diagnosis, what they need to cope during this difficult time, and how they will make decisions Other critical variables include the extent and accuracy of the information parents receive during this time and how that information is delivered There are no widely accepted standards for fetal counseling for congenital heart disease and therefore physicians may receive little, or no, formal training in this area Informed consent requires the patient (in this case the parent) to be properly informed; however, the few studies that have focused on counseling content have found great variability in the degree of information supplied.1,2 In addition, Murtuza et al found that there was a marked inconsistency in the composition of the counseling team.1 A recent study found that the majority of physicians counsel parents alone, and the setting and duration of counseling varied significantly.1,2 Providing adequate prenatal support for families requires an understanding of (1) what couples go through emotionally and psychologically, (2) the information and resources they require, (3) how best to relay that information so that it is understood, and (4) self-awareness on behalf of the counselor to limit bias We discuss those issues below in addition to practical considerations for physicians and a suggested framework for presenting information to those receiving a prenatal diagnosis of CHD ... From the moment a woman/couple are identified as possibly having a fetus with congenital heart defect, to entering the fetal cardiology clinic, through the exam, prenatal counseling, subsequent visits, and the peripartum period, care providers have to be sensitive to and actively seek... the moment a woman/couple are identified as possibly having a fetus with CHD, to entering the fetal cardiology clinic, through the exam, prenatal counseling, subsequent visits, and the peripartum period, care providers have to be sensitive