Abstract
Purpose
Family-building after gonadotoxic treatment often requires in vitro fertilization, surrogacy, or adoption, with associated challenges such as uncertain likelihood of success, high costs, and complicated laws regulating surrogacy and adoption. This study examined adolescent and young adult female (AYA-F) survivors’ experiences and decision-making related to family-building after cancer.
Methods
Semi-structured interviews explored fertility and family-building themes (N = 25). Based on an a priori conceptual model, hypothesis coding and grounded theory coding methods guided qualitative analysis.
Results
Participants averaged 29 years old (SD = 6.2) were mostly White and educated. Four major themes were identified: sources of uncertainty, cognitive and emotional reactions, coping behaviors, and decision-making. Uncertainty stemmed from medical, personal, social, and financial factors, which led to cognitive, emotional, and behavioral reactions to reduce distress, renegotiate identity, adjust expectations, and consider “next steps” toward family-building goals. Most AYA-Fs were unaware of their fertility status, felt uninformed about family-building options, and worried about expected challenges. Despite feeling that “action” was needed, many were stalled in decision-making to evaluate fertility or address information needs; postponement and avoidance were common. Younger AYA-Fs tended to be less concerned.
Conclusion
AYA-Fs reported considerable uncertainty, distress, and unmet needs surrounding family-building decisions post-treatment. Support services are needed to better educate patients and provide opportunity for referral and early preparation for potential challenges. Reproductive counseling should occur throughout survivorship care to address medical, psychosocial, and financial difficulties, allow time for informed decision-making, and the opportunity to prepare for barriers such as high costs.
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Acknowledgments
We would like to acknowledge the support provided from our patient organization partners with recruitment efforts, including Stupid Cancer, Lacuna Loft, The Samfund, GRYT Health, Alliance for Fertility Preservation, and Army of Women.
Funding
This research was supported by a grant from the National Cancer Institute (R03CA212924, PI: Catherine Benedict) and through the National Institutes of Health/National Cancer Institute Cancer Center Support Grant (P30 CA008748, Memorial Sloan Kettering Cancer Center).
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Catherine Benedict is a member of the Stupid Cancer Board of Directors, a Research Advisor to GRYT Health, and a member of the Advisory Council for the Alliance for Fertility Preservation. There are no financial relationships to disclose.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (Northwell Health Institutional Review Board; Protocol #16-876) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
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This article does not contain any studies with animals performed by any of the authors.
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Alexandria Hahn completed this work while at Northwell Health and Joanne Kelvin completed this work while at Memorial Sloan Kettering Cancer Center.
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Benedict, C., Hahn, A.L., McCready, A. et al. Toward a theoretical understanding of young female cancer survivors’ decision-making about family-building post-treatment. Support Care Cancer 28, 4857–4867 (2020). https://doi.org/10.1007/s00520-020-05307-1
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DOI: https://doi.org/10.1007/s00520-020-05307-1