Developing an Intervention for Disclosure of Parental HIV to Children in China

描述（由申请人提供）：全世界有超过3300万人感染艾滋病毒/艾滋病（PLWHA）。为人父母的艾滋病毒/艾滋病感染者和患者的主要关切之一是，是否、何时以及如何向子女透露他们的诊断结果。在中国这样资源匮乏、污名化程度高的环境中，父母迫切需要在披露方面得到指导，而艾滋病护理人员仍然没有做好干预的专业准备。在这份R21申请中，我们根据RFAHD- 12-205《向低收入和中等收入国家环境中的儿童披露艾滋病毒状况（R21）》编写了这份申请，我们建议开展形成性工作;为青少年儿童的父母开发一种创新的、文化上适当的艾滋病毒支持咨询干预措施;并在中国上海进行试点测试。在护士的协助下，在艾滋病毒阳性父母同伴的帮助下，干预可能会在3个月内进行2-3次会议，并在诊所进行。基于墨菲的家庭披露模式，它将包括3个组成部分：个性化评估，决策和支持，以及披露计划和行动。最后的内容将由形成性的工作，以前的研究和家庭披露的理论决定。这是一项利用扩大护士作用的低负担干预措施，有可能广泛实施，以更好地满足资源有限环境中艾滋病毒/艾滋病感染者/艾滋病患者的需求。该项目是一个多学科合作的专家在家庭适应艾滋病毒和儿童发展以及行为研究在中国。来自中国的公共卫生官员和来自上海公共卫生临床中心（SPHCC）的护理提供者将参与拟定研究中心。该团队拥有数十年在中国开展HIV行为研究的综合经验，初步研究表明了这种方法的重要性和创新性，以及他们与中国研究人员成功合作的能力。这项工作将利用PI的K24中期职业发展奖的资金，在此期间收集了研究的初步定性数据。这个为期两年的项目的具体目标是：（1）通过（1a）组建提供者和同行咨询委员会，（1b）分析定性数据，（1c）制定最终的咨询协议，来制定一个支持披露的干预措施;和（2）通过（2a）在20个至少有一种HIV-1的家庭中进行初步随机试验，评估可接受性和可行性，积极的父母和一个13-17岁的孩子和（2b）评估父母（生活质量和心理健康指标，坚持，社会支持，和披露压力，效能，准备和完成），儿童（行为，心理健康）和家庭（亲子关系，家庭沟通）的结果。将干预与常规治疗进行比较，基线（0个月），干预后即刻（3个月），和3个月随访（6个月）评估。 公共卫生相关性：本申请旨在针对中国艾滋病病毒感染者父母开展一项由护士提供的同伴辅助干预。其目标是帮助父母决定是否、何时以及如何向子女透露他们的艾滋病毒诊断结果，以改善他们自己及其子女的心理功能，管理父母的艾滋病毒疾病，以及整个家庭的功能。干预措施将旨在满足资源匮乏环境中的需求，因为那里几乎没有训练有素的精神卫生专业人员。

DESCRIPTION (provided by applicant): Worldwide, there are over 33 million persons living with HIV/AIDS (PLWHA). One of the main concerns among PLWHA who are parents is whether, when, and how to disclose their diagnosis to their children. In low resource, high-stigma settings like China, parents are desperate for guidance in disclosing yet HIV care providers remain professionally unprepared to intervene. In this R21 application, prepared in response to RFAHD- 12-205 "Disclosure of HIV-Status to Children in Low- and Middle-Income Country Settings (R21)", we propose to conduct formative work; develop an innovative, culturally appropriate disclosure-support counseling intervention for parents with adolescent children; and pilot test it in Shanghai, China. Facilitated by nurses assisted by HIV+ parent peers, the intervention will likely involve 2-3 sessions over 3 months and be administered at the clinic. Grounded in Murphy's familial disclosure model, it will comprise 3 components: individualized assessment, decision-making and support, and disclosure planning and action. Final content will be determined by the formative work, prior research, and theory on familial disclosure. A low-burden intervention that capitalizes on expanding the nurses' role, the intervention has the potential for widespread implementation to better meet the needs of PLWHA in limited-resource settings. This project is a multidisciplinary collaboration among experts in familial adaptation to HIV and child development as well as behavioral research in China. Public health officials from China and care providers will be involved from Shanghai Public Health Clinical Center (SPHCC) - the proposed study site. The team has decades of combined experience conducting HIV behavioral research in China, with preliminary research pointing to the significance and innovation of this approach and their ability to work collaboratively and successfully with Chinese investigators. The work will leverage funding from the PI's K24 Mid-Career Development Award, during which preliminary qualitative data for the study were collected. Specific aims of the 2-year project are to (1) develop a disclosure support intervention by (1a) forming provider and peer advisory boards, (1b) analyzing qualitative data, and (1c) manualizing the final counseling protocol; and (2) pilot test the disclosure support intervention by (2a) evaluating acceptability and feasibility with a preliminary randomized trial among 20 families with at least one HIV-positive parent and one child 13-17 years of age and (2b) assessing outcomes in parents (quality of life and mental health indicators, adherence, social support, and disclosure stress, efficacy, readiness, and completion); children (behavior, psychological well-being); and families (parent-child relationship, family communication). The intervention will be compared to treatment as usual, with baseline (0 mos.), immediate post-intervention (3 mos.), and 3-month follow-up (6 mos.) assessments. Public Health Relevance: This application proposes to develop a nurse-delivered, peer-assisted intervention targeting parents living with HIV in China. The goal is to assist parents in deciding whether, when, and how to disclose their HIV diagnosis to their children, in order to improve psychological functioning of themselves and their children, management of the parents' HIV disease, and overall family functioning. The intervention will be designed to address the need in low-resource settings, where there are few highly trained mental health professionals.