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

描述(申请人提供)：全世界有超过3300万艾滋病毒/艾滋病患者(PLWHA)。作为父母的PLWHA的主要担忧之一是是否、何时以及如何向他们的孩子披露他们的诊断结果。在中国这样的低资源、高耻辱的环境中，父母迫切希望得到披露信息的指导，但艾滋病毒护理人员仍然专业地没有准备好介入。在这份针对RFAHD-12-205《向中低收入国家的儿童披露艾滋病毒状况(R21)》的R21申请中，我们建议开展形成性工作；为有青春期子女的父母开发一种创新的、符合文化背景的披露-支持咨询干预措施；并在上海进行试点测试，中国说。在HIV父母同行协助下的护士的协助下，干预可能会在3个月内进行2-3次会议，并在诊所实施。基于墨菲的家族披露模式，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。最终的内容将由关于家族披露的形成工作、先前的研究和理论来确定。作为一种利用扩大护士作用的低负担干预措施，该干预措施有可能广泛实施，以在资源有限的情况下更好地满足PLWHA的需求。这个项目是中国在家庭适应艾滋病毒和儿童发展以及行为研究方面的专家之间的多学科合作。来自中国的公共卫生官员和护理人员将参与上海公共卫生临床中心--拟议的研究地点。该团队拥有数十年在中国进行艾滋病毒行为研究的综合经验，初步研究表明了这种方法的意义和创新，以及他们与中国调查人员合作并成功开展工作的能力。这项工作将利用PI的K24职业中期发展奖提供的资金，在此期间为研究收集了初步的定性数据。这个为期两年的项目的具体目标是：(1)通过(1a)成立提供者和同伴咨询委员会，(1b)分析定性数据，以及(1c)使最终咨询方案自动化，来制定披露支持干预措施；以及(2)通过(2a)对至少有一名艾滋病毒阳性父母和一个13-17岁孩子的20个家庭进行初步随机试验，评估披露支持干预措施的可接受性和可行性，以及(2b)评估父母的结果(生活质量和心理健康指标、遵守情况、社会支持、披露压力、有效性、准备程度和完成情况)；儿童(行为、心理健康)和家庭(亲子关系、家庭沟通)。干预将与常规治疗进行比较，包括基线(0个月)、干预后立即(3个月)和3个月随访(6个月)。评估。 公共卫生相关性：该应用程序建议针对中国的艾滋病毒携带者父母开发一种由护士提供的同伴辅助干预。目标是帮助父母决定是否、何时以及如何向子女披露他们的艾滋病毒诊断结果，以改善自己和子女的心理功能、父母艾滋病毒疾病的管理以及家庭的整体运作。这项干预措施将旨在解决资源匮乏的环境中的需求，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.