The impact of genetic counseling on women's grief and coping following termination of pregnancy for fetal anomaly

Abstract

Pregnancy termination for fetal anomaly (TFA) is a unique experience that can cause women to develop long‐term complicated grief. Although a woman's experience with her healthcare providers has been previously identified as an important factor in coping, studies have shown that many women report their health care as lacking to some extent. Given the overlap in women's needs and the practice scope of a genetic counselor (GC), this study aimed to examine how genetic counseling may impact coping and explore women's expectations of GCs pre‐ and post‐TFA. An online survey, which included the brief COPE and the short version of the Perinatal Grief Scale, was distributed among private online support groups. Appropriate statistical analysis tools, such as the Wilcoxon rank‐sum and t test, were utilized for quantitative analysis of the 124 responses, and inductive content analysis was utilized for qualitative analysis. Of those who underwent TFA within the last two years, women who saw a GC utilized active coping, planning, and positive reframing significantly more than women who did not see a GC (p = 0.001, p = 0.031, p = 0.027, respectively). GCs were perceived to have a positive impact on coping when providing information, objective care, emotional support, support resources, and follow‐up care; these practices encouraged confidence in their personal decision‐making and gave women hope for the future. This study not only identified key counseling roles for GCs prior to a TFA, but also demonstrated that genetic counseling prior to TFA may be beneficial to coping. Further studies are warranted to explore the needs of a more diverse population and to identify appropriate genetic counseling training methods to support women pursuing TFA.

Outcomes of Importance to Patients in Reproductive Genetic Carrier Screening: A Qualitative Study to Inform a Core Outcome Set

“…Training in grief and loss is considered an important aspect of genetic counselling practice [ 36 ]. A recent study explored the role of genetic counsellors in mitigating complex or prolonged grief following termination of pregnancy for fetal anomalies and identified a major role for genetic counsellors in facilitating adaptive coping [ 37 ]. Future research aiming to gain a better understanding of grief related to reproductive losses in the setting of RGCS will ensure that health providers can provide support and promote effective coping in increased risk couples.…”

Decision‐making and future pregnancies after a positive fetal anomaly screen: A scoping review

“…Compared to an average pregnant woman or birthing person, they made more visits to medical institutions and even requested for extra checkups, saw various healthcare professionals, depended more heavily on healthcare professionals for informational and emotional support, and had a more therapeutic physician-patient relationship (Lafarge et al, 2013(Lafarge et al, , 2019Rillstone, 1999). Additionally, parents in two studies reported utilising local and online pregnancy support groups to share their experiences, seek connection, reassurance and support from 'credible' parents, and manage plans while coping with the pain of a difficult pregnancy (Rillstone, 1999;Smith et al, 2021).…”

“It becomes your whole life”—Exploring experiences of reciprocal translocation carriers and their partners

“…Health professionals should be aware of the potential for compounding effects during the prenatal diagnosis process and identify individuals/ couples that may require a referral to a psychologist, as non-medical interventions can provide coping strategies and support (Bailey et al, 2015;Frederiksen et al, 2017). Genetic Counselors can provide emotional support to translocation carriers and their partners during this time to facilitate adaptive coping (Smith et al, 2021).…”