Annual Meeting Contributed Papers 2009 START Conference Manager    

“A lot of people didn’t have a chance to support us because we never told them…”: Stigma management, information poverty and HIV/AIDS information/help networks

Tiffany Veinot

(Submission #73)


It has long been observed that people may avoid seeking information if they believe that doing so will present a personal risk to them. Confronted with stigmatization, people affected by HIV/AIDS may face powerful social constraints against seeking HIV/AIDS-related information/help, especially from other people. Based on interviews with rural-dwelling people with HIV/AIDS and their friends/family members, the present research examines the role of stigmatization in participants’ efforts to establish and maintain HIV/AIDS information/help networks. Study findings revealed that, when developing networks, participants engaged in self-protective behaviours similar to Goffman’s (1963) stigma management theory, namely “information control”. Additionally, participants displayed the “secrecy” or “deception” that Chatman (1996) outlines in her information poverty theory. Some participants also described self-protective behaviours that were not identified in prior theories, such as implicitly agreeing to remain silent about the disease, obtaining information/help in distant locations and acquiring aid anonymously. In the aggregate, participants’ self-protective behaviours resulted in small information/help networks which often emphasized formal caregivers and family members/close friends. In contrast to Chatman’s (1996) information poverty theory, participants did not completely avoid information or think that they were devoid of sources of help, suggesting the complexity of information behaviour in the face of profound need.

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