Yang Joyce P, Xie Tianyi, Simoni Jane M, Shiu Cheng-Shi, Chen Wei-ti, Zhao Hongxin, Lu Hongzhou
Department of Psychology, University of Washington, Seattle, WA, USA.
Department of Psychology, Utah State University, Logan, UT, USA.
AIDS Behav. 2016 Jan;20(1):165-73. doi: 10.1007/s10461-015-1070-6.
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.
艾滋病毒呈阳性的父母在决定是否、何时以及如何向子女透露自己的艾滋病毒感染状况时面临艰难抉择。在中国,这是一个对艾滋病存在严重污名化且文化上重视家庭和睦的环境,针对父母透露情况的研究有限。我们旨在通过一项混合方法研究,建立一个考虑到中国文化背景的父母透露情况模型。在我们对上海和北京的艾滋病毒感染者父母进行的个人深度访谈(N = 24)以及调查数据(N = 84)中,我们发现透露情况的主要障碍包括污名化、担心暴露感染艾滋病毒的途径、给孩子造成心理负担、被孩子拒绝以及给家庭带来负面社会后果。父母同时也列举了许多透露情况的动机,如病情进展、确保孩子安全、获得帮助以及履行父母责任。大多数父母没有主动透露自己的艾滋病毒感染状况(68%);许多父母报告了某种形式的部分透露(例如,说自己患有血液病但未指明是艾滋病毒)、意外透露或被他人无意间向孩子透露。这些发现为中国父母艾滋病毒感染状况透露模型的建立提供了依据,其主要组成部分包括远端文化因素、决策(权衡方法和避免动机)、透露事件以及透露所产生的结果。该模型突出了中国父母透露过程的文化背景,可能有助于指导未来的观察性研究和干预工作。