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

描述（由申请人提供）：全球有超过3300万人感染艾滋病毒/艾滋病（PLWHA）。身为父母的艾滋病感染者主要关注的问题之一是是否、何时以及如何向子女披露自己的诊断。在中国这样资源匮乏、污名化程度高的环境中，父母迫切需要有关艾滋病信息披露的指导，而艾滋病护理人员在专业上仍未做好干预准备。在这份R21申请中，根据RFAHD- 12-205“向中低收入国家儿童披露艾滋病毒状况（R21）”的要求，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、文化上适当的披露支持咨询干预；并在中国上海进行试点测试。在护士和艾滋病毒阳性家长的协助下，干预可能涉及3个月的2-3次会议，并在诊所进行。以墨菲的家庭披露模型为基础，它将包括三个组成部分：个性化评估、决策和支持、披露计划和行动。最后的内容将由形成性的工作、先前的研究和家庭披露的理论来决定。这是一种利用扩大护士作用的低负担干预措施，具有广泛实施的潜力，可以在资源有限的环境中更好地满足艾滋病病毒携带者的需求。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护理提供者将参与上海公共卫生临床中心(SPHCC) -拟议的研究地点。该团队在中国开展艾滋病毒行为研究已有数十年的经验，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，以及（1c）手动制定最终咨询协议，制定披露支持干预措施；(2)通过（2a）在至少有一位艾滋病毒阳性父母和一名13-17岁儿童的20个家庭中进行初步随机试验，评估可接受性和可行性，（2b）评估父母的结果（生活质量和心理健康指标、依从性、社会支持、披露压力、有效性、准备程度和完成程度），对披露支持干预进行试点测试；儿童（行为、心理健康）；以及家庭（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。

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.