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Navigating parent-child disagreement about fertility preservation in minors: scoping review and ethical considerations.
Human Reproduction Update ( IF 13.3 ) Pub Date : 2022-08-25 , DOI: 10.1093/humupd/dmac019
Michelle Bayefsky 1 , Dorice Vieira 2 , Arthur Caplan 3 , Gwendolyn Quinn 1, 3, 4
Affiliation  

BACKGROUND Offering fertility preservation (FP) prior to gonadotoxic therapy, including cancer care and gender-affirming treatment, is now considered standard of care. Periodically, parents and children disagree about whether to pursue FP. However, it is unknown how often this occurs and how disagreement is handled when it arises. Moreover, there is no clear guidance on how to resolve these difficult situations. OBJECTIVE AND RATIONALE The purpose of this scoping review is to provide an overview of available research evidence about parent-child disagreement regarding FP in order to establish that disagreement occurs in practice, understand the basis for disagreement and explore suggestions for how such disputes could be resolved. Based on our findings, we offer a discussion of the ethical principles at stake when disagreement occurs, which can be used to guide clinicians' approaches when these challenging scenarios present. SEARCH METHODS A comprehensive literature search was run in several databases, including PubMed/Medline, Embase and the Cochrane Library. The search was performed in February 2021 and updated in August 2021. Articles were included in the final review if they discussed how parents or children wanted their views on FP taken into account, presented evidence that parent-child discordance regarding FP exists, discussed how to handle disagreement in a particular case or offered general suggestions for how to approach parent-child discordance about FP. Studies were excluded if the patients were adult only (age 18 years and older), pertained to fertility-sparing treatments (e.g. gonad shielding, gonadopexy) rather than fertility-preserving treatments (e.g. testicular tissue cryopreservation, ovarian tissue cryopreservation, oocyte cryopreservation or sperm cryopreservation) or explored the views of clinicians but not patients or parents. Meta-synthesis was used to synthesize and interpret data across included studies and thematic analysis was used to identify common patterns and themes. OUTCOMES In total, 755 publications were screened, 118 studies underwent full-text review and 35 studies were included in the final review. Of these studies, 7 discussed how parents or children wanted their opinions to be incorporated, 11 presented evidence that discordance exists between parents and children regarding FP, 4 discussed how disagreement was handled in a particular case and 21 offered general suggestions for how to approach parent-child disagreement. There was a range of study designs, including quantitative and qualitative studies, case studies, ethical analyses and commentaries. From the thematic analysis, four general themes regarding FP disagreement emerged, and four themes relating to the ethical principles at stake in parent-child disagreement were identified. The general themes were: adolescents typically desire to participate in FP decision-making; some parents prefer not to involve their children; minors may feel more favorably about FP than their parents; and transgender minors and their parents may have unique reasons for disagreement. The ethical principles that were identified were: minor's best interest; right to an open future; minor's autonomy; and parental autonomy. WIDER IMPLICATIONS This study offers an overview of available research on the topic of parent-child disagreement regarding FP and discusses the ethical considerations at stake when disagreement occurs. The findings can be used to inform guidance for clinicians presented with FP disagreement in practice.

中文翻译:

导航关于未成年人生育能力保留的亲子分歧:范围审查和伦理考虑。

背景技术在性腺毒性治疗(包括癌症治疗和性别确认治疗)之前提供生育力保留 (FP),现在被认为是标准治疗。有时,父母和孩子在是否追求 FP 上存在分歧。然而,目前尚不清楚这种情况发生的频率以及出现分歧时如何处理。此外,对于如何解决这些困难情况也没有明确的指导。目标和基本原理 本范围审查的目的是概述有关 FP 的亲子分歧的现有研究证据,以确定实践中存在分歧,了解分歧的基础并探讨如何解决此类争议的建议. 根据我们的发现,我们讨论了发生分歧时所涉及的道德原则,当这些具有挑战性的情况出现时,它可以用来指导临床医生的方法。搜索方法 在多个数据库中进行了全面的文献搜索,包括 PubMed/Medline、Embase 和 Cochrane 图书馆。搜索于 2021 年 2 月进行,并于 2021 年 8 月更新。如果文章讨论了父母或孩子希望如何考虑他们对 FP 的看法,提供证据表明存在亲子对 FP 的不一致,讨论了如何处理特定案例中的分歧,或就如何处理关于 FP 的亲子分歧提供一般性建议。如果患者仅是成年人(18 岁及以上),涉及保留生育能力的治疗(例如性腺屏蔽、性腺固定术)而不是保留生育能力的治疗(例如 睾丸组织冷冻保存、卵巢组织冷冻保存、卵母细胞冷冻保存或精子冷冻保存)或探讨临床医生的意见,而不是患者或父母的意见。元综合用于综合和解释纳入研究的数据,主题分析用于确定共同模式和主题。结果 总共筛选了 755 篇出版物,118 项研究进行了全文审查,35 项研究纳入最终审查。在这些研究中,7 项讨论了父母或子女希望如何纳入他们的意见,11 项提出证据表明父母和子女之间在 FP 方面存在分歧,4 项讨论了在特定案例中如何处理分歧,21 项就如何与父母接触提供了一般性建议-孩子的分歧。有一系列的研究设计,包括定量和定性研究、案例研究、伦理分析和评论。从主题分析中,出现了关于 FP 分歧的四个一般主题,并确定了与亲子分歧中的伦理原则相关的四个主题。总体主题是:青少年通常希望参与 FP 决策;一些父母不愿让孩子参与;与父母相比,未成年人可能更喜欢 FP;跨性别未成年人和他们的父母可能有独特的分歧理由。确定的道德原则是:未成年人的最大利益;开放未来的权利;未成年人的自主权;和父母的自主权。更广泛的影响 本研究概述了有关 FP 的亲子分歧主题的现有研究,并讨论了发生分歧时的伦理考虑。这些发现可用于指导临床医生在实践中出现 FP 分歧。
更新日期:2022-04-25
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