J J G Gietel-Habets1,2, C E M de Die-Smulders1,2, I A P Derks-Smeets1,2, A Tibben3, V C G Tjan-Heijnen2,4, R van Golde2,5, E Gomez-Garcia1,2, L A D M van Osch1,6. 1. Department of Clinical Genetics, Maastricht University Medical Centre+, Maastricht, The Netherlands. 2. GROW-School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, The Netherlands. 3. Centre for Human and Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands. 4. Department of Internal Medicine, Division of Medical Oncology, Maastricht University Medical Centre+, Maastricht, The Netherlands. 5. Department of Obstetrics and Gynaecology, Maastricht University Medical Centre+, Maastricht, The Netherlands. 6. Department of Health Promotion/CAPHRI, Maastricht University, Maastricht, The Netherlands.
Abstract
OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
Keywords:
BRCA mutation; cancer; decision making; hereditary breast and ovarian cancer (HBOC); oncology; preimplantation genetic diagnosis (PGD); reproduction; support needs
Authors: Pan Pan Xiao; Si Qing Ding; Ying Long Duan; Xiao Fei Luo; Yi Zhou; Qin Qin Cheng; Xiang Yu Liu; Jian Fei Xie; Andy Sk Cheng Journal: Front Psychol Date: 2022-09-27
Authors: G De Krom; Y Severijns; W L Vlieg; Y H J M Arens; R J T Van Golde; C E M De Die-Smulders; L A D M Van Osch Journal: J Assist Reprod Genet Date: 2020-05-16 Impact factor: 3.412