Measuring Medical Care Experiences and Traumatic Stress in Differences of Sex Development

衡量性别发育差异中的医疗护理经历和创伤压力

基本信息

批准号：
10266145
负责人：
CANICE Ellen CRERAND
金额：
$ 20.82万
依托单位：
RESEARCH INST NATIONWIDE CHILDREN'S HOSP
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-09-17 至 2023-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10266145
关键词：
Address Adult Age Anxiety Birth Caregivers Caring Cataloging Childhood Clinical Clinical Management Communication Communities Consent Data Decision Making Depression and Suicide Development Diagnosis Distress Ensure Ethics Exhibits Family Fertility Foundations Functional disorder Gender Gender Identity Generations Genetic Genital Genitalia Goals Heterogeneity Human Rights Impairment Incidence Individual Infertility Intersex Intervention Link Measurement Measures Medical Mental Health Methods Modeling National Institute of Child Health and Human Development Operative Surgical Procedures Outcome Parents Patient Self-Report Patient-Centered Care Patients Personal Satisfaction Phenotypic Sex Photography Population Property Provider Psychometrics Psychosocial Assessment and Care Puberty Reaction Recording of previous events Reporting Research Risk Science Services Sexual Dysfunction Sexual and Gender Minorities Standardization Test Result Testing Time Trauma Underserved Population United Nations United States United States National Institutes of Health Voice Vulnerable Populations Youth base care preference care providers cognitive interview community based participatory research coping cultural competence experience genital surgery health disparity high risk improved improved outcome infancy instrument medical specialties novel patient oriented personalized care preference psychologic psychosocial recruit research and development resilience response satisfaction sex development disorder stress symptom tool trauma symptom traumatic stress urologic young adult

项目摘要

PROJECT SUMMARY/ABSTRACT Differences of sex development (DSD) are heterogeneous conditions that involve discordance between genetic, gonadal, or phenotypic sex evident at birth or through atypical development during puberty. DSD pose unique clinical management and psychosocial challenges, including impairments to fertility, sexual and urological function, atypical genitalia, increased incidence of gender identity incongruent with gender of rearing, and at times, controversies about gonadectomy and/or genital surgery, which are often performed in infancy before individuals with DSD can participate in decision-making or provide consent. Individuals with DSD are at risk for mental health problems, including traumatic stress symptoms, anxiety, depression, and suicidality, but little is known about relationships between medical care experiences and mental health. Although interdisciplinary care is currently recommended for DSD, medical care remains variable and controversial, with a paucity of data to guide empirically supported medical and psychosocial care practices. Some individuals with DSD report devastating experiences related to their medical care including distress over a lack of autonomy to make critical decisions about medical interventions performed for primarily psychosocial and non- medical purposes (e.g., genital/gender-typifying surgeries performed in infancy) and frequent genital medical exams and photography, often performed without clearly communicated rationales. A significant barrier to understanding medical care practices, experiences, impacts, and patient needs is the lack of any patient- centered, validated instruments specific to the DSD population to assess these issues and their relationships with mental health, including traumatic stress symptoms. Using a community-based participatory research approach and building on the foundation of our prior DSD research, we will develop, pilot, and establish initial psychometrics for a novel youth self-report instrument which will assess DSD care-related preferences, needs, experiences, and impacts on mental health among youth with DSD (ages 11-18 years). Specific aims include: 1) Convening a diverse Stakeholder Advisory Board consisting of youth with DSD, caregivers of youth with DSD, adults with DSD, and DSD clinicians representing a range of specialties to identify key domains of experiences and needs and item content identification to evaluate medical care experiences and their impacts on well-being; 2) Refining items for comprehensibility, content validity, acceptability/cultural competence, and coverage of key experiences through iterative cognitive interviewing; and 3) Evaluating initial psychometric properties of the developed instrument, including test-retest reliability and convergent and criterion validity. Our overarching objective is to expand access to personalized care in an underserved, vulnerable pediatric population, youth with DSD, by identifying medical care practices associated with positive and poor adjustment and informing tailored interventions to promote well-being.

项目摘要/摘要性发展的差异（DSD）是涉及不一致的异质条件遗传性，性腺或表型性别在出生时或青春期非典型发育而明显。 DSD姿势独特的临床管理和社会心理挑战，包括对生育，性和性的损害泌尿外科功能，非典型生殖器，性别认同的发生率与性别不一致的发生率与性别不一致，有时，关于腺苷切除术和/或生殖器手术的争议通常是在婴儿期进行的在患有DSD的个人可以参与决策或提供同意之前。 DSD的人处于心理健康问题的风险，包括创伤性压力症状，焦虑，抑郁和自杀性，但关于医疗体验与心理健康之间的关系知之甚少。虽然目前，建议DSD进行跨学科护理，医疗保健仍然可变且有争议，缺乏数据来指导经验支持的医学和社会心理护理实践。一些人 DSD报告与其医疗服务有关的毁灭性经历，包括缺乏的困扰自治是要对主要的心理社会和非 - 医疗目的（例如，在婴儿期进行的生殖器/性别型手术）和频繁的生殖器医学考试和摄影，经常在没有明确传达的理由的情况下进行。一个重大的障碍了解医疗保健实践，经验，影响和患者需求是缺乏任何患者居中，经过验证的工具针对DSD人群评估这些问题及其关系具有心理健康，包括创伤性压力症状。使用基于社区的参与性研究在我们先前的DSD研究的基础上接近和建立基础，我们将开发，试点并建立初始新型青年自我报告工具的心理计量学，该工具将评估与DSD护理相关的偏好，需求， DSD青年（11-18岁）的经验以及对心理健康的影响。具体目的包括： 1）召集一个多元化的利益相关者顾问委员会，由年轻人组成的年轻人，年轻人的护理人员 DSD，具有DSD的成年人和DSD临床医生，代表一系列专业，以识别经验，需求和项目内容识别，以评估医疗体验及其影响关于幸福； 2）精炼项目，以实现可理解性，内容有效性，可接受性/文化能力以及通过迭代认知访谈覆盖关键经验； 3）评估初始心理测量开发仪器的特性，包括重测的可靠性以及收敛性和标准有效性。我们的总体目标是在服务不足，脆弱的小儿中扩展获得个性化护理的访问人口，具有DSD的青年，通过确定与正调整相关的医疗惯例并告知量身定制的干预措施以促进福祉。