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

针对性发育障碍儿童的照顾者开发互联网传播的疾病不确定性干预措施：多中心合作

• 批准号: 9193359
• 负责人: Larry L. Mullins
• 金额: $ 20.02万
• 依托单位: OKLAHOMA STATE UNIVERSITY STILLWATER
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-06-03 至 2019-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9193359
• 关键词: Affect; Belief; Birth; Caregivers; Caring; Child; Child Care; Chronic Disease; Collaborations; Communities; Country; Cues; Data; Decision Making; Development; Diabetes Mellitus; Diagnosis; Disease model; Distress; Emotional; Ethnic Origin; Event; Extended Family; Family; Focus Groups; Friends; Funding; Future; Gender; Genital system; Geographic Locations; Grant; Health; Hormonal; Hospitals; Individual; Internet; Intervention; Intervention Trial; Interview; Lead; Life; Long-Term Effects; Malignant Neoplasms; Measures; Medical; Mental Health; Methods; Modeling; National Institute of Child Health and Human Development; Nature; Newly Diagnosed; Normalcy; Operative Surgical Procedures; Outcome; Parents; Patient-Focused Outcomes; Play; Positioning Attribute; Process; Quality of life; Race; Randomized Clinical Trials; Randomized Controlled Trials; Reporting; Research; Research Design; Research Methodology; Role; Schools; Siblings; Site; Socioeconomic Status; Source; Testing; Time; Uncertainty; United States National Institutes of Health; ambiguous genitalia; caregiver interventions; design; effective intervention; experience; improved; intervention effect; multidisciplinary; outcome forecast; post-traumatic stress; psychological distress; reproductive; research study; sex; sex development disorder; skills; stress symptom; therapy development

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.

项目摘要 模棱两可的生殖器的诞生使社会对性别和“正常人”的信念，是 既创伤又孤立。 在孩子一生的早期决定，可能会对孩子的情感和情感良好产生持久的影响 但是。 对孩子的诊断的困扰和不确定性，这可能会导致仓促决策和 长期结局不良。 定性和定量研究方法，以实现Internet提供干预措施，以减少 患有性发展障碍的儿童的父母的不确定性（DSD）。 首先，我们将对患有DSD的孩子的父母进行定性访谈，以便更好地了解您 儿童诊断，治疗和程序病的各个方面以前正在触发，并且 保持不确定性的水平升高。 专门的多学科团队可以治疗DSD，这些DSD在本研究中都符合颗粒物。 因此，我们将能够从种族，种族和众多父母中获取信息 社会经济地位。第二，我们将使用分析分析定性数据 为了重新确定不确定性的信息，可以开发简短的6模块互联网干预措施 会在hoho hoho的情况下诊断医院 在我们的财团中，使父母在进行研究的过程中会参加研究 做出这些早期的医疗决定。 不确定性的水平和围绕孩子诊断的心理困扰较少，这会柳树 做出最佳的医疗决策会考虑其孩子的照顾，并最终导致更好的长期 DSD患者的结果。 国际的随机对照试验。