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Toward a theoretical understanding of young female cancer survivors’ decision-making about family-building post-treatment

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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).

Author information

Authors and Affiliations

  1. Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, 401 Quarry Rd, Stanford, CA, 94305, USA

    Catherine Benedict

  2. Albert Einstein College of Medicine, The Bronx, NY, USA

    Alexandria L. Hahn

  3. Center for Health Innovation and Outcomes Research, Feinstein Institute for Medical Research, Northwell Health, Manhasset, NY, USA

    Alyssa McCready & Michael Diefenbach

  4. Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Joanne F. Kelvin

  5. Hunter College and The Graduate Center, City University of New York (CUNY), New York, NY, USA

    Jennifer S. Ford

Authors
  1. Catherine Benedict
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  2. Alexandria L. Hahn
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  4. Joanne F. Kelvin
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  5. Michael Diefenbach
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  6. Jennifer S. Ford
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Corresponding author

Correspondence to Catherine Benedict.

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Conflict of interest

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.

Human rights

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.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Welfare of animals

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

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