Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio.
Divisions of Endocrinology, Nationwide Children's Hospital, Columbus, Ohio.
Pediatr Blood Cancer. 2019 Nov;66(11):e27966. doi: 10.1002/pbc.27966. Epub 2019 Aug 12.
Over half of male childhood cancer survivors experience infertility after treatment, which is known to cause distress and impact future quality of life. Sperm banking rates remain low, and little is known about how adolescent and young adult (AYA) males and their families make fertility preservation (FP) decisions. This study examined AYA and parent perceptions of participating in a research study focused on testing a new FP decision tool at the time of cancer diagnosis.
Forty-four participants (19 mothers, 11 fathers, 14 male AYAs 12-25 years old) from 20 families completed brief assessments at diagnosis and approximately one month later, including a qualitative interview exploring the impact of study participation. Verbatim transcripts were coded through thematic content analysis using the constant comparison method.
Two major themes emerged: (1) a positive effect of participating in the study and (2) a neutral effect (no positive/negative effect of participation). Subthemes that emerged for participants who noted a positive effect included (a) participation prompted deeper thinking, (b) participation influenced family conversations, and (c) participation resulted in altruism/helping others. No participant reported a negative effect.
This study demonstrates that participation in family-centered research focused on FP among AYA males, before treatment begins, is perceived as beneficial or neutral at the time of a new cancer diagnosis. These findings provide support for future family-centered FP interventions for this population.
超过一半的男性儿童癌症幸存者在治疗后会出现不育，这已知会引起困扰并影响未来的生活质量。精子库的储存率仍然很低，对于青少年和年轻成年人（AYA）男性及其家庭如何做出生育力保存（FP）决策，我们知之甚少。本研究调查了 AYA 和家长对参与一项研究的看法，该研究旨在癌症诊断时测试一种新的 FP 决策工具。
来自 20 个家庭的 44 名参与者（19 名母亲，11 名父亲，14 名 12-25 岁的男性 AYA）在诊断时和大约一个月后完成了简短的评估，包括一项定性访谈，探讨了参与研究的影响。使用恒定性比较法对逐字记录进行主题内容分析编码。
出现了两个主要主题：（1）参与研究的积极影响，（2）中性影响（无参与的积极/负面影响）。对参与效果积极的参与者的子主题包括：（a）参与促使更深入地思考，（b）参与影响家庭对话，（c）参与导致利他主义/帮助他人。没有参与者报告有负面影响。
这项研究表明，在开始治疗之前，针对 AYA 男性的以家庭为中心的 FP 研究中的参与，在新癌症诊断时被认为是有益的或中性的。这些发现为该人群的以家庭为中心的 FP 干预措施提供了支持。
