dsdfamilies, Edinburgh, UK.
Surrey and Boarders Partnership, NHS Foundation Trust, Leatherhead, UK.
Horm Res Paediatr. 2023;96(2):228-237. doi: 10.1159/000525452. Epub 2022 Jun 10.
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 well-being 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 nonsurgical 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 for 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 and 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.
知情决策和考虑儿童的最佳利益为建立知情和终身讨论提供了一个起点，这些讨论促进了具有性别发育差异（DSD）或间性特征的个体的长期利益和福祉。父母需要足够的信息和支持，以了解在了解非手术选择时，“采取行动和不采取行动”真正意味着什么。这可能需要健康素养支持，询问父母如何获得有意义和易懂的信息，以及社会心理支持和心理护理。及时的心理评估和支持知情决策的干预措施是 DSD 儿童及其父母全面关怀的重要组成部分。如果没有可行的工具或方法，父母就无法对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 DSD 个体越来越擅长培养机智、收集和应用有关身体的知识，限制儿童时期的不可逆转手术可以为他们提供更广泛的生活选择。为此，一个受过教育和知情的全面和有益的多学科团队理解并体现了作为一个整体团队的需要，即在与儿童及其 DSD 个体的父母的所有互动中提供富有同情心、情感支持和有效的关怀。本文借鉴了主要作者在与慈善机构 dsdfamilies 合作时的经验，最后提出了一些可行的方法，包括通过健康素养支持个人知识，检查基于团队的心理护理，以及在整个生命周期中的社会心理方法。
