Because programs preventing prenatal HIV transmission are reaching a greater number of pregnant womenworldwide and are successfully reducing vertical transmission, an ever increasing majority of children born toHIV-positive mothers are uninfected. In addition, new medical innovations and increasing availability ofantiretroviral therapy (ART) have improved the health and longevity of HIV-positive parents, which means theyare 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 anincreasingly important issue in terms of well-being of parents, children and families. The global literature inparental HIV disclosure suggests that developmentally appropriate, well-planned disclosure can greatly benefitthe well-being of PLH, their children and families. However, for multiple reasons including fear of stigma and thepsychological 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 infectionto children primarily because they lack the confidence and behavioral skills to appropriately and effectivelyaccomplish 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 beensteadily expanding. In this application, we propose to adapt relevant components from two evidence-basedprograms developed in the US to produce a theory-driven developmentally appropriate parental HIV disclosureintervention in Guangxi, China, where we have built a strong research infrastructure and communitycollaboration through NIH-funded research since 2004. The proposed project consists of three main operationalphases. Phase I includes formative research to examine current practices, barriers and facilitators, culturalinfluences, and effects of disclosure on PLH and their children. The data to be collected in this phase willcomplement the data we have collected and will inform the adaption of intervention content and deliverymodality. Phase II includes the development and pilot-testing of a theory-guided parental HIV disclosureintervention program with two components (a primary parent component and a secondary care providercomponent) by culturally adapting and integrating aspects of two US-based programs that were efficacious ineither helping parents to make appropriate HIV disclosure or improving mental health status of PLH and theirchildren. 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 (eitherfathers or mothers) and their children (6 to 15 years of age). The research will also identify contextual andindividual 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 parentalefforts in disclosing their HIV status to their children by examining whether a theory-based intervention canimprove parental HIV disclosure in a low-resource setting. The proposed study will also provide cross-culturalevidence to support the role of parental disclosure in the well-being of parents, children, and families.
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.
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