Informed decision-making and considerations of the child’s best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the wellbeing of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what ‘doing something and doing nothing’ really means when learning about non-surgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care with children and youth with DSD and their parents. Without actionable tools or approaches parents cannot make informed decisions about their child’s health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness, gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author’s experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team based psychological care, and psychosocial approaches across the lifespan.


中文翻译：

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倾听性发育差异或双性人及其家人的心声：“不做手术不代表什么都不做”

知情决策和对儿童最大利益的考虑为建立知情和终身讨论提供了一个起点，这些讨论促进了长期利益和经历性发育 (DSD) 或双性特征差异的个人的福祉。父母需要足够的信息和支持来了解在了解非手术选择时“做某事和什么都不做”的真正含义。这可能采取健康知识支持的形式，询问父母如何获得有意义和易于理解的信息，以及社会心理支持和心理护理。支持知情决策行动的及时心理评估和干预措施是对患有 DSD 的儿童和青少年及其父母进行全面护理的一个重要方面。如果没有可行的工具或方法，父母就无法就孩子的健康做出明智的决定，因此，健康素养是帮助父母和孩子做出决策的关键属性。随着患有 DSD 的人越来越善于建立足智多谋、收集和应用关于他们身体的知识，在童年时期限制不可逆转的手术可以提供更广泛的生活选择。为此，一个受过教育、见多识广、全面且乐于助人的多学科团队理解并体现，作为一个整体，在与儿童父母和患有 DSD 的个人的所有互动中，都需要富有同情心、情感支持和验证护理。该论文借鉴了主要作者与慈善机构 dsdfamilies 合作的经验，