The University of Texas MD Anderson Cancer Center UTHealth Graduate School of Biomedical Sciences, Houston, TX, USA.
Pediatrix Medical Group of the Mid-Atlantic, Fairfax, VA, USA.
J Genet Couns. 2021 Apr;30(2):522-532. doi: 10.1002/jgc4.1338. Epub 2020 Oct 26.
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.
胎儿异常终止妊娠（TFA）是一种独特的经历，可能会导致女性长期出现复杂的悲伤。尽管女性与医疗保健提供者的经历以前被认为是应对的一个重要因素，但研究表明，许多女性报告说她们的医疗保健在某种程度上有所欠缺。鉴于女性的需求和遗传咨询师（GC）的实践范围重叠，本研究旨在探讨遗传咨询如何影响应对方式，并探讨女性在 TFA 前和后对 GC 的期望。一项在线调查，其中包括简要应对量表和围产期悲伤量表的简短版本，分发给私人在线支持小组。适当的统计分析工具，如 Wilcoxon 秩和检验和 t 检验，用于对 124 份回复进行定量分析，而归纳内容分析用于定性分析。在过去两年内进行 TFA 的女性中，与未接受 GC 咨询的女性相比，寻求 GC 咨询的女性更积极地应对、计划和积极重新构建（p=0.001，p=0.031，p=0.027）。GC 提供信息、客观护理、情感支持、支持资源和后续护理时，被认为对应对方式有积极影响；这些做法增强了她们对个人决策的信心，并为她们的未来带来了希望。本研究不仅确定了 GC 在 TFA 前的关键咨询角色，还表明 TFA 前的遗传咨询可能对应对方式有益。需要进一步研究以探索更多样化人群的需求，并确定支持选择 TFA 的女性的适当遗传咨询培训方法。
