“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

Abstract

Because of fears of stigmatization, people with HIV/AIDS (PHAs) may avoid health care and refuse illness-related information and support. However, HIV/AIDS-related information, especially that which is provided by other people, has also been shown to a vital resource for PHAs and their loved ones. This research examines the role of stigmatization in PHAs' and their friends/family members' efforts to establish personal networks for HIV/AIDS-related information and help ("information/help networks"). To investigate this question, I draw upon Goffman's (1963) stigma management theory and Chatman's (1996) theory of information poverty. Semi-structured, indepth interviews were conducted with 114 PHAs, their friends/family members, health care and service providers in three rural regions of Canada. Results revealed that the majority of PHAs and friends/family members had relatively small networks for HIV/AIDS information/help. For many participants, the challenges of living with HIV/AIDS led to changes in their personal networks, and stigmatization playing a significant part in such changes. Participants developed information/help networks in a manner consistent with stigma management theory in their decisions to disclose selectively to others, to avoid the topic in conversation, to obtain information/help at a distance or to acquire information/help without disclosing their HIV status.However, in contrast to Chatman's theory, participants did not wholly avoid information from interpersonal sources nor believe that no one was available to help them. These findings suggest that information behaviour theory may need to evolve in order to account for the complexity of self-protective behaviour.

How "Community" Matters for How People Interact With Information: Mixed Methods Study of Young Men Who Have Sex With Other Men

“…This finding opens previously unrealized possibilities for both public health and informatics interventions, such as potentially providing community-based services that help MSM understand the relevance of HIV/AIDS information and support them in discussing HIV/AIDS information with knowledgeable people whom they trust. Our research also suggests, as we have argued elsewhere, that stigma-reduction interventions may improve access to HIV/AIDS information in communities [3]. We also highlight the fact that interventions that engage at-risk groups in preventing HIV/AIDS among their members (eg, [69]) may have under-acknowledged consequences for information sharing in a variety of forms.…”

“…We have also learned that the situational relevance of information varies by community, leading to selective information acceptance in different groups [2]. Additionally, Chatman’s “Theory of Information Poverty” tells us that social costs associated with seeking certain forms of information within a community may result in information avoidance [2,3]. Despite these observations, we lack a systematic portrait of the relationship between people’s everyday community involvements and their HII, including how important community involvement might be in the emergence of these patterns [1,4].…”

Approaches to socio-cultural barriers to information seeking

“…Veinot (2009) examined barriers faced by a stigmatized group, in this case individuals with HIV/AIDS. The barriers manifested themselves in that the participants disclosed their problems selectively to others, avoided the topic in conversation, and tried to seek information without disclosing their HIV status.…”

“…As the provision of and access to alternative information sources has remarkably improved thanks to the Internet, the socio-cultural barriers may be less fatal than in the past. For example, barriers originating from social stigma due to HIV status can be circumvented-at least partially-by consulting web pages (Veinot, 2009). An empirical study conducted by Hasler, Ruthven, and Buchanan (2014) demonstrated that Internet discussion forums provide an outlet for those suffering from information poverty to express their information needs and associated concerns.…”

HIV/AIDS‐related stigma and information behaviour: an ethnographic study in the UK

“…People diagnosed with HIV/AIDS, along with those who are close to them, often become victims of discrimination, prejudice and stigma. Despite improved testing services, effective treatment and legislation to protect people living with HIV from discrimination, HIV/AIDS‐related stigma is still pervasive and plays a unique and disturbing role for the growing number of people living with or affected by the condition . In the UK, prejudice and stigma remain a reality to a substantial number of the people who are infected with or affected by HIV/AIDS .…”