AIDSImpact.com:: - Santa Fe, USA 2011

Abstract #47 - Parental HIV/AIDS disclosure, stigma, and psychosocial consequences among AIDS orphans in Henan, China
Authors: Presenting Author: Dr. Xiaoming Li - Wayne State University School of Medicine
Additional Authors: Dr. Liying Zhang, Dr. Junfeng Zhao, Dr. Guoxiang Zhao, Dr. Xiaoyi Fang, Dr. Xiuyun Lin, Dr. Bonita Stanton,
Aim: During the late 1980s to the early 1990s, thousands of farmers in central rural China were infected with HIV through unhygienic blood collection procedures. Many of these HIV infected blood donors died and left their children behind. Limited data are available regarding the disclosure of parental AIDS to these AIDS orphans. This qualitative study aims to investigate the disclosure of parental HIV/AIDS and its’ impact on children.
Method / Issue: In-depth individual interviews with 47 children who had lost one or both parents to AIDS were conducted in two rural counties of Henan China in 2006. Participants were selected with stratification by care arrangement, gender, and age. Twenty-three children were selected from AIDS orphanages while 24 children were selected from family-based care. In-depth individual interviews were conducted using semi-structured interview guides. With the appropriate consent of the participants, the interviews were digitally recorded. Coding themes were developed based upon the constructs from the interview guide, as well as on the basis of the interview of transcripts. Coding themes for this specific study included disclosure of parental HIV/AIDS, stigma against AIDS orphans, and psychosocial problems. All transcripts of in-depth individual interviews were coded using the qualitative data analysis software ATLAS.ti 5.
Results / Comments: Among the 47 participants, 34 (72.3%) were double orphans. Twenty seven (57.4%) participants were male. The mean age of participants was 12.9 years. The main disclosers were grandmothers who told AIDS orphans that their parents died of AIDS. Surviving parents (who were often infected too) also were the main disclosers. Some AIDS orphans knew about their parents’ disease based on their observations and suspicion. Few children knew the truth via overheard conversation and their reactions with villagers. Family members were unwilling to disclose the parental AIDS to children due to concerns of being stigmatized. Disclosure did not happen until the children asked in some cases. In some cases even though children asked, family members did not tell them the truth or just simply told them that their parents had a serious illness to protect the children from getting hurt. Positive outcomes of disclosure were that children gave more emotional support to the surviving infected parent and children took more responsibilities to the family. Negative outcomes of disclosure were that some children experienced being sad and angry for their parents’ incurable disease due to blood donation. Inappropriate disclosure caused children’s worrying being isolated from friends and villagers. However, nondisclosure caused children’s increased fears, anxiety and concerns.
Discussion: Disclosure of parental HIV serostatus to children was not common in China although children finally knew it after their parents’ death. Disclosure of parental HIV serostatus to their children is a challenge and needs more future research in the society in which culturally people discourage the disclosure of distressful events in general and the disclosure of HIV/AIDS serostatus in particular.
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