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Facing the unknown : exploring the impact of possible infertility on young adult childhood cancer survivors Newton, Kelly

Abstract

Background: Approximately 83% of children diagnosed with cancer survive into adulthood. Yet, adult survivors of childhood cancer (ACCS) are at high risks for late effects, conditions that develop 5 or more years following cancer treatment. Cancer treatments during childhood can cause infertility, a late effect associated with psychological distress and poor quality of life. However, not all ACCS at risk for infertility have a definitive diagnosis and the experience of facing an unknown fertility status, and specific support needs of survivors remain poorly understood. Purpose: The primary purpose of this research was to describe the challenges young ACCS experience when facing an unknown fertility status. This study also examined the ways in which men and women differed in their perceptions and experiences of unknown fertility. Methods: This interpretive descriptive qualitative study included 10 ACCS, 5 men and 5 women, who participated in semi-structured interviews. Interview data were analyzed using an exploratory approach, allowing for content-driven inductive analysis, which involved open coding and constant comparative techniques to identify themes that captured the main similarities and differences in ACCS experiences. Results: Six central themes emerged. First, living in the unknown is emotionally challenging for ACCS, in that the related fear, sadness and anxiety complicates the lives of the participants. Second, possible infertility influences romantic relationships by impeding emotional connections and contributing to the worry of disappointing one’s partner. Third, determining when to seek fertility testing is difficult, with readiness to have children and complications associated with fertility testing important considerations. Fourth, discussing fertility with health care providers, friends and family is awkward. Fifth, ACCS receive limited fertility-related education across the cancer trajectory because of their young age at time of treatment and health care provider insufficient infertility-related knowledge. Lastly, ACCS perceive that fertility testing and confirmed infertility is detrimental to women but not men, which they attribute to both biological and gender differences. Conclusion: This study provides beginning insights into the experiences of young ACCS as they navigate an unknown fertility status, and highlights existing gaps in fertility-related healthcare services.

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Attribution-NonCommercial-NoDerivatives 4.0 International