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父母对其子女健康状况和神经发育状况的披露:一项系统综述与质性元综合分析

Parents' disclosure of their child's health and neurodevelopmental conditions: A systematic review and qualitative metasynthesis.

作者信息

Mateo-Arriero Irene, Perry Yael, Gilbey Dylan, Ohan Jeneva L

机构信息

School of Psychological Science, University of Western Australia.

出版信息

J Fam Psychol. 2025 Jun;39(4):503-514. doi: 10.1037/fam0001313. Epub 2025 Feb 3.

Abstract

Parents of children with physical/mental health and/or neurodevelopmental conditions often need to make disclosure decisions for their child. Disclosure can bring benefits (e.g., support) but can also risk harm (e.g., stigma). This systematic review aimed to consolidate research regarding parents' disclosure experiences to better understand how to support parents during this process. We focused on two research questions: (1) What factors contribute to parents' decision to disclose or conceal their child's health or neurodevelopmental condition? (2) If they choose to do so, how, when, and to whom do parents typically disclose? Twenty studies of medium to good quality were identified through systematic electronic database searches since 1990. Data were analyzed using a descriptive-interpretative approach and presented as a qualitative metasynthesis. Factors contributing to parents' disclosure decisions included managing stigma, protecting privacy, advocating, and seeking social support. Parents considered disclosure based on existing relationships, adapted disclosure content to context, and planned how to disclose. Throughout all findings, the child's best interests were at the forefront of parents' decision making. Factors affecting parents' disclosure decisions were similar across different childhood conditions. Disclosure decisions are complex and challenging but become easier with experience after the child's diagnosis, indicating that parents need disclosure support relatively soon after diagnosis. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

摘要

患有身心健康和/或神经发育疾病的儿童的父母通常需要为他们的孩子做出信息披露的决定。披露可能会带来好处(例如,支持),但也可能有造成伤害的风险(例如,污名化)。这项系统综述旨在整合关于父母信息披露经历的研究,以更好地了解如何在这一过程中支持父母。我们关注两个研究问题:(1)哪些因素促使父母决定披露或隐瞒孩子的健康或神经发育状况?(2)如果他们选择披露,父母通常如何、何时以及向谁披露?自1990年以来,通过系统的电子数据库搜索,共确定了20项质量中等至良好的研究。使用描述性解释方法对数据进行分析,并以定性元综合的形式呈现。促使父母做出披露决定的因素包括应对污名化、保护隐私、倡导以及寻求社会支持。父母基于现有的关系考虑披露,根据具体情况调整披露内容,并规划如何披露。在所有研究结果中,孩子的最大利益始终是父母决策的首要考虑因素。不同儿童疾病中影响父母披露决定的因素相似。披露决定复杂且具有挑战性,但在孩子被诊断后,随着经验的积累会变得更容易,这表明父母在诊断后不久就需要披露方面的支持。(PsycInfo数据库记录(c)2025美国心理学会,保留所有权利)

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