Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, The Netherlands.
GROW-School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, The Netherlands.
Psychooncology. 2018 Jul;27(7):1795-1801. doi: 10.1002/pon.4729. Epub 2018 May 4.
Reproductive decision making for couples with hereditary breast and ovarian cancer (HBOC) is complex and can result in decisional conflict or regret. This study investigated couples' support needs and aimed to identify vulnerable couples. Ultimately, we should strive to develop a clear standard of care guideline regarding reproductive decision support.
Mixed methods were used for data collection. A focus group study was conducted among 18 couples (N = 35) with HBOC who had made a reproductive decision after reproductive counselling. Subsequently, 129 similar couples (N = 258) were invited to complete a cross-sectional survey based on the focus group study.
Clinical and practical aspects of reproductive counselling were positively evaluated in the focus group study, although couples indicated a need for additional support with emotional and social concerns in which their relationship, social environment, and the way they picture their desired family were key elements. The survey was completed by 86 participants. Making a reproductive choice was experienced as (very) difficult by 43%, and 69% showed a need for additional support during decision making. Younger participants and those who opted for a natural pregnancy experienced more difficulty with reproductive decision making, and partners showed a higher need for psychological support than carriers.
Couples with HBOC who need to make a reproductive decision have specific needs for guidance and support, of which the desired content and methods can vary. It is therefore important to identify vulnerable couples and to attune counselling to couples' needs.
遗传性乳腺癌和卵巢癌（HBOC）患者的夫妻生育决策较为复杂，可能导致决策冲突或后悔。本研究调查了夫妻的支持需求，并旨在识别弱势夫妻。最终，我们应该努力制定明确的生育决策支持护理标准。
采用混合方法进行数据收集。在接受生育咨询后做出生育决策的 18 对（N=35）HBOC 夫妻中进行了焦点小组研究。随后，根据焦点小组研究邀请了 129 对类似夫妻（N=258）完成横断面调查。
焦点小组研究中对生育咨询的临床和实际方面给予了积极评价，尽管夫妻表示需要额外的支持来处理情感和社会问题，其中包括他们的关系、社会环境以及他们对理想家庭的描绘等关键因素。共有 86 名参与者完成了调查。43%的人表示做出生育选择非常困难，69%的人在决策过程中表示需要额外的支持。年轻的参与者和选择自然怀孕的参与者在生育决策方面遇到了更多的困难，伴侣比携带者更需要心理支持。
需要做出生育决策的 HBOC 夫妻有特定的指导和支持需求，其内容和方法可能有所不同。因此，识别弱势夫妻并根据夫妻的需求调整咨询非常重要。
