Development of an Internet-Delivered Illness Uncertainty Intervention for Caregivers of Children with a Disorder of Sex Development: A Multi-Center Collaboration

项目摘要 一个生殖器不明确的孩子的出生挑战了社会关于性别和“正常”的观念，并 给他们的父母和家人带来精神创伤和孤立感。父母参与了重要的医学研究 在孩子生命早期做出的决定可能会对孩子的身体和情绪健康产生持久的影响- 是存在的。然而，在做出这些决定的过程中，父母往往会受到自己心理上的影响 对孩子的诊断感到痛苦和不确定，这可能导致仓促的决策和 长期结果不佳。拟议的项目将采用混合方法的研究设计，结合 定性和定量的研究方法，最终开发互联网提供的干预措施，以减少 性发育障碍(DSD)儿童父母的不确定性。这项研究以两个目标为指导： 首先，我们会与患有精神障碍儿童的家长进行定性访问，以加深了解 儿童的诊断、治疗和预后的各个方面，以前和现在都是触发和 保持较高的不确定性水平。值得注意的是，我们有一个由10家医院组成的现有财团，所有医院都有 致力于参与这项研究的DSD治疗专业多学科团队。 因此，我们将能够从广泛的父母那里获得关于种族、民族和 社会经济地位。其次，我们将使用主题分析来分析定性数据，并将使用 信息，以开发一个简短的，6个模块的互联网提供的干预措施，旨在减少不确定性。我们 是否会在通过任何一家医院确诊为DSD的儿童的父母中试行这种干预措施 在我们的联合体中，这样这些家长将在参与研究的同时经历 做出这些早期的医疗决定。我们预计，参与干预的家长报告的比例会更低 围绕孩子诊断的不确定性程度和较少的心理痛苦，这将使他们能够 做出关于孩子护理的最明智的医疗决定，并最终带来更好的长期结果 DSD患者的预后。拟议的研究结果将用于开发未来的多站点， 干预的随机对照试验。

Project Summary The birth of a child with ambiguous genitalia challenges societal beliefs about gender and “normalcy”, and is both traumatizing and isolating for their parents and families. Parents are involved in making important medical decisions early in the child's life that can have long-lasting effects on the child's physical and emotional well- being. However, during the time of making these decisions parents are often affected by their own psychological distress and uncertainty about the child's diagnosis, which can potentially lead to hasty decision-making and poor long-term outcomes. The proposed project will utilize a mixed-methods research design, combining qualitative and quantitative research methods to ultimately develop an internet-delivered intervention to reduce uncertainty for parents of children with a Disorder of Sex Development (DSD). The study is guided by two aims: First, we will conduct qualitative interviews with parents of children with a DSD in order to better understand the aspects of the child's diagnosis, treatment, and prognosis that were previously and are currently triggering and maintaining elevated levels of uncertainty. Notably, we have an established consortium of 10 hospitals, all with specialized multi-disciplinary teams for the treatment of DSD, who are committed to participating in this study. As such, we will be able to obtain information from a wide range of parents in terms of race, ethnicity, and socioeconomic status. Second, we will analyze the qualitative data using thematic analyses and will use this information to develop a brief, 6-module internet-delivered intervention targeting the reduction of uncertainty. We will pilot-test this intervention with parents of children who have a new DSD diagnosis through any of the hospitals in our consortium, such that these parents will be participating in the study while going through the process of making these early medical decisions. We expect that parents who participate in the intervention will report lower levels of uncertainty and less psychological distress surrounding their child's diagnosis, which will allow them to make the best-informed medical decisions regarding their child's care, and ultimately result in better long-term outcomes for patients with DSD. The results of the proposed study will be used to develop a future, multisite, randomized controlled trial of the intervention.