Concerns of Parental HIV Disclosure in China

Although parental HIV disclosure has benefits for parents and children, the disclosure rate among parents remains low. This study aims to qualitatively examine parental concerns regarding disclosure of their HIV status to their children. Eighty parents were enrolled in a randomized controlled trial of a three-session disclosure-support intervention, with forty receiving the intervention and forty receiving treatment as usual. Intervention sessions were audio recorded, and transcriptions were qualitatively coded for content related to concerns of disclosure. Four themes emerged: Intention to disclose, disclosure approach, indicators for disclosure, and fears about disclosure. These themes reveal struggles that parents experience when considering HIV disclosure suggesting that an effective disclosure intervention must help parents assess pros and cons, discuss the emotions of the children after the disclosure, and monitor the impact on children’s lives after disclosure over time. Future research is needed to implement interventions supporting HIV-positive parents’ disclosure decision-making and actions.

iCOPE, a multi-level, cluster randomized, 36-month, parallel-group study to assess the efficacy of HIV disclosure intervention in HIV parental disclosure among parents living with HIV in China

Objectives: Parents living with HIV who disclose their HIV status to their children could benefit from the parental HIV disclosure. However, it is also very challenging because of persistent stigma and discrimination against HIV. This report describes the study design and protocol of the “Interactive Communication with Openness, Passion, and Empowerment (iCOPE)” randomized controlled trial aimed at assisting parents living with HIV in conducting culturally and developmentally appropriate disclosure to their uninfected children in China through trainings among both parents living with HIV and healthcare providers. Methods: A total of 791 parents living with HIV with children aged between 6 and 15 years and 357 healthcare providers were randomized into either the intervention group or control group. Intervention package for parents consisted of five 2-h sessions focusing on positive coping, disclosure decision making, developing a developmentally appropriate disclosure plan, and accessing social support and post-disclosure counseling. The intervention for healthcare providers was made up of two 45-min sessions organized around two primary themes: knowledge of child cognitive development and effective parent–child communication skills in the context of parental disclosure. The control group received nutritional education of either five 2-h sessions (parents) or two 45-min sessions (healthcare providers). The outcome assessments were conducted at baseline, 6, 12, 18, 24, 30, and 36 months. Conclusion: The iCOPE study is among the first efforts to develop and evaluate a theory-based and multi-level intervention to promote culturally and developmentally appropriate parental HIV disclosure in China. It has implications for healthcare providers, social workers, and policy makers as it will provide efficacy data on how to enhance appropriate parental HIV disclosure and will shed light on developing a clinical guideline regarding parental HIV disclosure in China and other low- and middle-income countries.

Disclosure of Parental HIV Status to Children: Experiences of Adults Receiving Antiretroviral Treatment at an Urban Clinic in Kampala, Uganda

Limited data are available on the experiences of parental HIV disclosure to children in Uganda. We conducted a qualitative study comprising sixteen in-depth interviews and four focus group discussions with parents receiving highly active antiretroviral therapy. Analysis was done using Atlas.ti qualitative research software. Back-and-forth triangulation was done between transcripts of the in-depth interviews and focus group discussions, and themes and subthemes were developed. Barriers to parents’ disclosure included perceptions that children are too young to understand what HIV infection means and fears of secondary disclosure by the children. Immediate outcomes of disclosure included children getting scared and crying, although such instances often gave way to more enduring positive experiences for the parents, such as support in adherence to medical care, help in household chores, and a decrease in financial demands from the children. Country-specific interventions are needed to improve the process of parental HIV disclosure to children and this should encompass preparation on how to deal with the immediate psychological challenges associated with the parent’s disclosure.