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

制定干预措施，向中国儿童披露父母艾滋病毒感染情况

• 批准号: 8389405
• 负责人: Jane M. Simoni
• 金额: $ 21.32万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-07-11 至 2014-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8389405
• 关键词: 12 year old; 17 year old; AIDS/HIV problem; Acute; Address; Adherence; Adolescence; Adolescent; Advisory Committees; Age; Behavioral Research; Caring; Child; Child Behavior; Child Development; China; Chinese People; Clinic; Clinical; Communication; Communities; Confidential Information; Counseling; Country; Data; Decision Making; Development; Diagnosis; Disclosure; Discrimination; Disease; Distress; Environment; Family; Family member; Fathers; Fright; Funding; Goals; Guilt; HIV; HIV Seropositivity; HIV diagnosis; Health; Health Professional; Income; Individuation; Institution; Interdisciplinary Study; Intervention; Intervention Studies; K-Series Research Career Programs; Lead; Life; Literature; Mental Health; Modeling; Mothers; Nurse' s Role; Nurses; Only Child; Outcome; Parent-Child Relations; Parents; Patients; Personal Satisfaction; Persons; Process; Protocols documentation; Provider; Psychological Impact; Public Health; Quality of life; Readiness; Research; Research Infrastructure; Research Personnel; Resources; Sampling; Seasons; Secrecy; Site; Social support; Staging; Stigmata; Stress; Testing; Training; Uncertainty; Work; Youth; design; experience; follow-up; improved; innovation; meetings; member; peer; post intervention; psychologic; psychological distress; public health relevance; randomized trial; response; skills; social stigma; theories; treatment as usual

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.

描述（由申请人提供）：全球，有超过3,300万人患有艾滋病毒/艾滋病（PLWHA）。 PLWHA是父母的主要关注点之一是，是否，何时以及如何向孩子披露他们的诊断。在低资源中，像中国这样的高污点环境，父母迫切需要指导披露，但艾滋病毒护理提供者仍然专业地没有做好干预。在此R21申请中，按照RFAHD-12-205的响应“对低收入和中等收入国家环境中的儿童披露HIV状态”（R21）”，我们建议进行形成性工作；为有青春期子女的父母开发创新的，文化上适当的披露支持咨询干预措施；并在中国上海进行试点测试。由艾滋病毒+父母同伴协助的护士协助，干预措施可能会在3个月内进行2-3个课程，并在诊所进行管理。基于墨菲的家族披露模型，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。最终内容将由形成性工作，先前的研究和家庭披露理论决定。这项小负担的干预措施利用了扩大护士角色的利益，该干预措施有可能在有限的资源环境中更好地实施PLWHA的需求。该项目是在家庭适应艾滋病毒和儿童发展方面的专家之间的多学科合作，以及中国的行为研究。中国的公共卫生官员和护理提供者将涉及上海公共卫生临床中心（SPHCC） - 拟议的研究地点。该团队在中国进行了数十年的综合经验，在中国进行艾滋病毒行为研究，初步研究表明，这种方法的重要性和创新及其与中国调查人员合作，成功合作的能力。这项工作将利用PI的K24中期发展奖的资金，在此期间收集了该研究的初步定性数据。 2年项目的具体目的是（1）通过（1a）成立提供商和同伴咨询委员会，（1B）分析定性数据，以及（1C）手动对最终咨询协议进行手动的披露支持； （2）试点测试披露支持干预措施（2A）通过（2a）评估至少一个HIV阳性父母和13-17岁孩子的20个家庭中的初步随机试验评估可接受性和可行性。儿童（行为，心理健康）；和家庭（亲子关系，家庭交流）。干预措施将与往常一样，基线（0 mos），立即干预后（3个月）和3个月的随访（6个月）进行比较。 公共卫生相关性：该申请建议开发针对中国艾滋病毒携带的父母的护士，同行协助的干预措施。目的是协助父母决定是否，何时以及如何向孩子披露他们的艾滋病毒诊断，以改善自己和子女的心理功能，管理父母的艾滋病毒疾病的管理以及整体家庭功能。干预措施将旨在满足低资源环境中的需求，那里的精神卫生专业人员很少。