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28. People Living With HIV/AIDS in China Are Eager for Online Social Support

There are over 1 million PLWHA (people living with HIV/AIDS) living in China. Usually, PLWHA ask for support from families and friends. In 2011, PLWHA in China created an online social support. In the information age, the Internet has become the main platform for the PLWHA request and receive social support.

 People Living With AIDS/HIV Find It Difficult to Request and Receive Social Support From Chinese Society


Source: South China Post
In China, HIV/AIDS carries a greater stigma than other diseases. Chines people often make moral judgement and discriminate against PLWHA. HIV/AID is often associated with prostitution, homosexuality and injecting drugs. Moreover, uninfected relatives (HIV-negative) of PLWHA might also suffer from discrimination and humiliation. For example, uninfected children of PLWHA have been barred from school and many job positions.
PLWHA in China might desire to conceal their HIV-positive status under the pressure and distress of moral judgement and stigma from others. Since the Internet provides an anonymous environment, which can reduce personal stigma.

The Internet Has Become an Important Source of Social Support for PLWHA

In 2011, PLWHA created an online Support group on Weibo (www. weibo.com), which is the Chinese equivalent Twitter, and named the HIV/AIDS Group Weibo. Social support can help emotional recovery during HIV/AIDS treatment. Especially, social support can buffer stress and negative effects associated with their disease, and improve psychosocial well-being.
Traditional social supports involve face-to-face interaction, which have to expose PWLHA's identities. However, online social groups have various benefits, such as anonymity, similarities among participants and convenience. There are over 390,000 participants in the HIV/AID social group Weibo. Active online group members receive far more support from Weibo than from offline interactions. 
Participants feel more satisfied with social support they received and less likely to feel distressed. In addition, families and friends of PLWHA obtain support and encouragement on Weibo and feel more positive as well.


Individuals Have Different Demands from Online social support Requst


The content and frequency of the messages posted by HIV/AIDS online support group were analyzed according to Social Support Behavior Code (SSBC). The result shows that the contents of messages fall into three categories: 
  • Informational support requests, which inquire about information on HIV/AIDS (eg.“I am confused whether or not I should take medicine."), are the most common requests.
  • Instrumental support requests, which seek tangible resources or services (eg."I am looking for a partner who would like to live with me in Beijing.), are the second common requests. 
  • Emotional support requests, which express negative emotional states or seek empathy, reassurance, encouragement, or support (eg. “I am very scared and lonely. Can someone comfort me?”), are the least common requests.
The majority of PLWHA need more knowledge and experience related to control HIV level and decrease the progression of their disease on Weibo. They also ask for instrumental support on Weibo, which is difficult to receive it in reality. For example, some of them long for a homosexual relationship. They may conceal sexual preference offline because homosexuality is against the traditional value in Chinese conservative society.

Social Support Provisions Are Four Times More Frequent Than Social Support Requests on Weibo

For the messages posted by HIV/AIDS Online Social Support Weibo, study shows that around one-fifth of them are requests, and the vast majority messages are provisions. Since volunteers and non-government
 organizations are involved to provide support, the provisions are much more than the requests.
  • Over half of the provisions are informational support (eg. "I took ART and it reduced my CD4 cells.)
  •  Alternatively, one-third of provisions are emotional support provision.(eg. "Come on! We should look after ourselves.")
  • Only few support provisions are instrumental. (eg. I am happy to financially support for PLWHA in Beijing.)
The result indicates that a large amount of informational support requests and provisions are exchanged information in terms of treatment and prevention of HIV/AIDS among group members. However, few instrumental provisions are provided because some may choose to answer instrumental requests, such as a homosexual relationship, in private messages.
The HIV/AIDS Groups Weibo represent the demands of thousands of PLWHA. The online environment reduces stigma toward them and their relatives. PLWHA can share personal experiences and obtain information resources, emotional encouragement, and instrumental assistant on Weibo. It also helps buffer their mental stress and improve the quality of their lives.



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