A Mixed-Methods Study Supporting a Model of Chinese Parental HIV Disclosure

Abstract

Parents who are HIV-positive confront difficult decisions regarding whether, when, and how to disclose their HIV status to their children. In China, a setting of acute HIV stigma where family harmony is culturally valued, limited research has been conducted on parental disclosure. We aimed to develop a model of parental disclosure that accounts for the cultural context in China based on a mixed-methods study. In our individual, in-depth interviews (N = 24) as well as survey data (N = 84) collected from parents living with HIV in Shanghai and Beijing, we found the primary barriers to disclosure were stigma, fear of exposing the mode by which they acquired HIV, psychologically burdening the child, rejection by the child, and negative social consequences for the family. Parents concurrently cited many motivations for disclosure, such as disease progression, ensuring safety of the child, gaining assistance, and fulfilling their parental responsibility. Most parents had not actively disclosed their HIV status (68 %); many parents reported some form of partial disclosure (e.g., sharing they have a blood disease but not labeling it HIV), unplanned disclosure, or unintentional disclosure to their children by other people. Findings informed the development of a Chinese Parental HIV Disclosure Model, with primary components accounting for distal cultural factors, decision-making (balancing approach and avoid motivations), the disclosure event, and outcomes resulting from the disclosure. This model highlights the cultural context of the Chinese parental disclosure process, and may be useful in guiding future observational research and intervention work.

Unable to be a Human Being in Front of Other People: A Qualitative Study of Self-Isolation Among People Living with HIV/AIDS in China

“…Several researchers have emphasized the importance of viewing the behaviors of Chinese PLWHA in the context of family relationships and the broader social and cultural environment (Li et al, 2006; Li, Sun, Wu, Wu, Lin, & Yan, 2007a; Lee, Kochman, & Sikkema, 2002; Ogden and Nyblade, 2005; Yang et al, 2016; Simoni, Yang, Shiu, Chen, Udell, Bao, et al, 2015). For example, significant differences have been reported between the support systems of HIV-positive individuals in the United States as compared to China (Yu, Yang, Shiu, Simoni, Xiao, Chen, et al, 2015; Li et al, 2006; Li, Liang, Ding, & Ji, 2011).…”

“…Given the acute HIV stigma in China, among healthcare providers as well as the general population (Yang, Leu, Simoni, Chen, Shiu, & Zhao, 2015), Chinese PLWHA are at risk for diminished physical and mental health outcomes and poorer overall quality of life (Niu, Luo, Liu, Silenzio, & Xiao, 2016; Yang, Xie, Simoni, Shiu, Chen, Zhao, et al, 2016). Persons of lower socio-economic status, rural origin, and ethnic or sexual minority status, face additional and intersecting challenges to optimal health (Tao, Kipp, Liu, Zhang, Ruan, Yin et al, 2015).…”

“Please Don’t Make Me Ask for Help”: Implicit Social Support and Mental Health in Chinese Individuals Living with HIV

“…With our current sample, we asked, “Do any of the people in your household know your HIV status”, with 16% of respondents answering “No”, 26% - “Some know”, and 41 % - “All know”. Other studies have identified PLWHA’s concerns about disclosure, including anticipated and experienced negative impact of HIV disclosure, such as being ostracized by their neighbors, kicked out of their villages of residence, fired from work, and causing psychological burden [41, 42]. In summary, much fewer than half of HIV-positive individuals have fully disclosed their HIV status to their friends and family, likely due to potentially negative consequences, suggesting that seeking explicit social support for needs related to HIV may be particularly difficult, as they would have to disclose the nature of their request and distress.…”

“…Low rates of disclosure mean that seeking explicit forms of social support to assist in HIV-related distress would be more difficult as well as potentially less rewarding due to possible ramifications of disclosure. These anticipated consequences of disclosure range from fearing stigma both from and for the disclosure recipients (e.g., due to family association to the HIV-positive individual) to causing psychological burden for the recipients [41]. This may explain the seemingly perplexing findings by Sun et al [17] as discussed in the introduction, where a sample of HIV-positive participants in China reported both moderately high levels of social support and concurrent high psychological distress.…”

Facilitators of and barriers to HIV self-management: Perspectives of HIV-positive women in China

“…Having the role of caregiver for the family, HIV-positive women usually defer their dream in order to pass it along to the next generation (Chen et al, 2013; Chen et al, 2011). Women with children were particularly concerned about how to disclose their status so their children would understand what had happened to their mothers and provide support to their mothers as part of the recovery process (Yang, Leu, et al, 2015; Yang, Xie, et al, 2015). …”