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“与癌症作斗争后组建家庭令人疲惫不堪且令人抓狂”:探索寻求治疗后家庭建设财务援助的年轻癌症幸存者的真实体验。

"Creating a family after battling cancer is exhausting and maddening": Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment.

机构信息

Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Manhasset, NY, USA.

Feinstein Institute for Medical Research, Northwell Health, Manhasset, NY, USA.

出版信息

Psychooncology. 2018 Dec;27(12):2829-2839. doi: 10.1002/pon.4898. Epub 2018 Oct 19.

Abstract

OBJECTIVE

Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial concerns of survivors pursuing family building through assisted reproductive technology (ART) and adoption.

METHODS

Retrospective study of data collected from grant applications for financial assistance with family building. Grounded theory methodology using an inductive data-driven approach guided qualitative data analysis.

RESULTS

Participants (N = 46) averaged 32 years old (SD = 3.4) were primarily female (81%) and married/partnered (83%). Four main themes were identified representing the (1) emotional experiences and (2) financial barriers to family building after cancer, (3) perceived impact on partners, and (4) disrupted life trajectory. Negative emotions were pervasive but were balanced with hope and optimism that parenthood would be achieved. Still, the combination of high ART/adoption costs, the financial impact of cancer, and limited sources for support caused extreme financial stress. Further, in the face of these high costs, many survivors reported worry and guilt about burdening partners, particularly as couples failed to meet personal and societal expectations for parenthood timelines.

CONCLUSION

After cancer, YAs face numerous psychosocial and financial difficulties in their pursuits of family building when ART/adoption is needed to achieve parenthood. Survivors interested in future children may benefit from follow-up fertility counseling post-treatment including discussion of ART options, surrogacy, and adoption, as appropriate, and potential barriers. Planning for the financial cost and burden in particular may help to avoid or mitigate financial stress later on.

摘要

目的

接受性腺毒性治疗的青年癌症幸存者有生育能力受损和/或生育困难的风险。本研究探讨了通过辅助生殖技术(ART)和收养来实现家庭生育的幸存者的经历和经济问题。

方法

对申请生育援助赠款的资料进行回顾性研究。采用归纳式数据驱动方法的扎根理论方法指导定性数据分析。

结果

参与者(N=46)平均年龄为 32 岁(标准差=3.4),主要为女性(81%)和已婚/伴侣(83%)。确定了四个主要主题,代表了(1)癌症后生育的情感经历和(2)经济障碍,(3)对伴侣的感知影响,以及(4)生活轨迹中断。负面情绪普遍存在,但与对生育的希望和乐观相平衡。尽管如此,高 ART/收养费用、癌症的经济影响以及有限的支持来源导致了极度的经济压力。此外,面对这些高昂的费用,许多幸存者报告说,他们担心给伴侣带来负担,特别是当夫妇未能满足个人和社会对生育时间的期望时,这会产生内疚感。

结论

癌症后,青年在追求生育时,会面临许多心理社会和经济困难,需要通过 ART/收养来实现生育。对未来孩子感兴趣的幸存者可能会受益于治疗后的后续生育咨询,包括讨论 ART 选择、代孕和收养,视情况而定,以及潜在的障碍。特别是规划经济成本和负担可能有助于避免或减轻以后的经济压力。

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