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

Toward a theoretical understanding of young female cancer survivors' decision-making about family-building post-treatment
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DOI:
10.1007/s00520-020-05307-1
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发表时间:
2020-01-28
影响因子:
3.1
通讯作者:
Ford, Jennifer S.
Ford, Jennifer S.
中科院分区:
医学2区
文献类型:
--
作者:
Benedict, Catherine;Hahn, Alexandria L.;Ford, Jennifer S.

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目的:促性腺毒素治疗后的家庭建设通常需要体外受精、代孕或收养,同时存在成功可能性不确定、成本高、代孕和收养法律复杂等挑战。本研究调查了青少年和年轻成年女性(AYA-F)癌症幸存者的经历和与家庭建设相关的决策。方法半结构化访谈探讨生育和家庭建设主题(N = 25)。在先验概念模型的基础上,假设编码和扎根理论编码方法指导定性分析。结果参与者平均年龄29岁(SD = 6.2),多为受过教育的白人。确定了四个主要主题:不确定性的来源,认知和情绪反应,应对行为和决策。不确定性源于医疗、个人、社会和经济因素,这些因素导致认知、情感和行为反应,以减少痛苦,重新协商身份,调整期望,并考虑迈向家庭建设目标的“下一步”。大多数未成年人不知道自己的生育状况,不了解家庭建设的选择,并担心预期的挑战。尽管感到需要采取“行动”,但许多国家在评价生育率或满足资料需要的决策方面停滞不前;推迟和回避是常见的。年轻的aya - f往往不那么担心。结论:AYA-Fs报告了治疗后围绕家庭建设决策的相当大的不确定性、痛苦和未满足的需求。需要支持服务,以更好地教育患者,并提供转诊机会和对潜在挑战的早期准备。生殖咨询应贯穿于幸存者护理的整个过程,以解决医疗、心理社会和经济困难,为知情决策留出时间,并有机会为高费用等障碍做好准备。
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.