Perceptions of participating in family-centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study
Perceptions of participating in family-centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study
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DOI：
10.1002/pbc.27966
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发表时间：
2019-08-12
影响因子：
3.2
通讯作者：
Gerhardt, Cynthia A.
中科院分区：
文献类型：
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作者：
Nahata, Leena;Morgan, Taylor L.;Gerhardt, Cynthia A.
超过一半的男性儿童癌症幸存者在治疗后经历不育，这被认为会导致痛苦并影响未来的生活质量。精子银行率仍然很低，而且对青少年和年轻成年（AYA）男性及其家庭如何做出生育保留（FP）决定知之甚少。本研究调查了AYA和父母参与一项研究的看法，该研究的重点是在癌症诊断时测试一种新的FP决策工具。方法来自20个家庭的44名参与者（19名母亲、11名父亲、14名12-25岁的男性青少年）在诊断时和约一个月后完成了简短评估，包括一次定性访谈，探讨研究参与的影响。逐字记录本是通过使用常数比较法进行专题内容分析而编码的。结果两个主要的主题出现：（1）参与研究的积极影响和（2）中性效应（没有积极/消极的影响参与）。注意到积极影响的参与者出现的次主题包括：（a）参与促进更深入的思考，（B）参与影响家庭对话，（c）参与导致利他主义/帮助他人。没有参与者报告负面影响。结论：本研究表明，参与以家庭为中心的研究集中在FP的AYA男性，治疗开始前，被认为是有益的或中性的新的癌症诊断时。这些研究结果为未来以家庭为中心的计划生育干预提供了支持。
Background 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. Methods 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. Results 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. Conclusions 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.