Because programs preventing prenatal HIV transmission are reaching a greater number of pregnant women worldwide and are successfully reducing vertical transmission, an ever increasing majority of children born to HIV-positive mothers are uninfected. In addition, new medical innovations and increasing availability of antiretroviral therapy (ART) have improved the health and longevity of HIV-positive parents, which means they are more likely to raise their children for many years after the initial diagnosis. For parents living with HIV ("PLH"), disclosing their HIV infection to their seronegative children ("parental HIV disclosure") becomes an increasingly important issue in terms of well-being of parents, children and families. The global literature in parental HIV disclosure suggests that developmentally appropriate, well-planned disclosure can greatly benefit the well-being of PLH, their children and families. However, for multiple reasons including fear of stigma and the psychological burden such knowledge might place on their children, PLH often struggle about whether, when, what, and how to talk to their children about their HIV infection. Many of them do not disclose their HIV infection to children primarily because they lack the confidence and behavioral skills to appropriately and effectively accomplish this task. To date, the issues surrounding parental HIV disclosure have been understudied, particularly in low- and middle-income countries (LMICs) including China where the HIV epidemic has been steadily expanding. In this application, we propose to adapt relevant components from two evidence-based programs developed in the US to produce a theory-driven developmentally appropriate parental HIV disclosure intervention in Guangxi, China, where we have built a strong research infrastructure and community collaboration through NIH-funded research since 2004. The proposed project consists of three main operational phases. Phase I includes formative research to examine current practices, barriers and facilitators, cultural influences, and effects of disclosure on PLH and their children. The data to be collected in this phase will complement the data we have collected and will inform the adaption of intervention content and delivery modality. Phase II includes the development and pilot-testing of a theory-guided parental HIV disclosure intervention program with two components (a primary parent component and a secondary care provider component) by culturally adapting and integrating aspects of two US-based programs that were efficacious in either helping parents to make appropriate HIV disclosure or improving mental health status of PLH and their children. Phase III will rigorously evaluate the efficacy of the proposed intervention on well-being of PLH, children and families over 36 months through a cluster randomized controlled trial involving 800 PLH (either fathers or mothers) and their children (6 to 15 years of age). The research will also identify contextual and individual factors that potentially mediate or moderate the effect of the proposed intervention on parent, child, and family outcomes. The proposed research will address the dearth of targeted interventions supporting parental efforts in disclosing their HIV status to their children by examining whether a theory-based intervention can improve parental HIV disclosure in a low-resource setting. The proposed study will also provide cross-cultural evidence to support the role of parental disclosure in the well-being of parents, children, and families.

Public Health Relevance

In response to the overarching goal of FOA#RFA-HD-12-197, we propose to develop, implement, and evaluate a theory-driven parental disclosure intervention to assist PLH to make a planned, developmentally appropriate disclosure of their HIV status to their uninfected children or, for PLH with younger children, to articulate a clear plan for disclosure to their children when developmentally appropriate. The majority of the 33.4 million individuals living with HIV worldwide reside in low-resource settings and are also of reproductive and child- rearing age. It is therefore important to the field of public health to develop an evidence-based parental disclosure intervention that can be effectively delivered to parents by a broad range of paraprofessionals. We hypothesize that the proposed intervention will demonstrate efficacy in helping PLH to make developmentally appropriate disclosure to children or make a developmentally appropriate plan of disclosure and will demonstrate short, medium, and long-term efficacy in improving the well-being of parents, children, and families. The proposed scientifically rigorous evaluation includes mixed methods of data collection, a cluster randomized controlled trial, multiple data sources, and a 36-month longitudinal follow-up involving a large sample of parents, children, and providers. The intervention program to be developed and the evaluation data to be collected in the current study will inform the practice and clinic guidelines aimed at improving both parental HIV disclosure and the well-being of PLH, children and families in China and other LMICs.

National Institute of Health (NIH)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel (ZHD1)
Program Officer
Siberry, George K
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Wayne State University
Schools of Medicine
United States
Zip Code
Wang, Yuanhui; Chen, Xinguang; Li, Xiaoming et al. (2016) Cigarette smoking among Chinese PLWHA: An exploration of changes in smoking after being tested HIV positive. AIDS Care 28:365-9
Zhang, Chen; Li, Xiaoming; Liu, Yu et al. (2016) Emotional, physical and financial burdens of stigma against people living with HIV/AIDS in China. AIDS Care 28 Suppl 1:124-31
Qiao, Shan; Li, Xiaoming; Zhou, Yuejiao et al. (2016) AIDS impact special issue 2015: interpersonal factors associated with HIV partner disclosure among HIV-infected people in China. AIDS Care 28 Suppl 1:37-43
Zhang, Liying; Li, Xiaoming; Lin, Zhenping et al. (2016) Side effects, adherence self-efficacy, and adherence to antiretroviral treatment: a mediation analysis in a Chinese sample. AIDS Care 28:919-26
Zhang, Chen; Li, Xiaoming; Liu, Yu et al. (2016) Stigma against People Living with HIV/AIDS in China: Does the Route of Infection Matter? PLoS One 11:e0151078
Qiao, Shan; Nie, Jing-Bao; Tucker, Joseph et al. (2015) The role of social relationship in HIV healing and its implications in HIV cure in China. Health Psychol Behav Med 3:115-127
Li, Xiaoming; de Wit, John; Qiao, Shan et al. (2015) HIV disclosure to children in low-and middle-income countries: towards effective interventions. AIDS 29 Suppl 1:S1-5
Li, Xiaoming; Qiao, Shan; de Wit, John et al. (2015) What's in the telling? Understanding social, psychological and clinical aspects of HIV disclosure. AIDS Care 27 Suppl 1:1-5
Qiao, Shan; Li, Xiaoming; Zhou, Yuejiao et al. (2015) Factors influencing the decision-making of parental HIV disclosure: a socio-ecological approach. AIDS 29 Suppl 1:S25-34
Zhao, Junfeng; Li, Xiaoming; Qiao, Shan et al. (2015) Parental HIV disclosure: from perspectives of children affected by HIV in Henan, China. AIDS Care 27:416-23

Showing the most recent 10 out of 16 publications