Social capital and HIV/AIDS information/help exchange networks in rural Canada.

摘要

While HIV/AIDS is often perceived to be an urban concern, some rural dwellers must confront this complex disease in their daily lives. Like their urban counterparts, rural people with HIV/AIDS (PHAs) and their family members/friends need HIV/AIDS information, support and care. Interpersonal sources of information and help are also vital for people facing any serious illness. Unfortunately, however, rural dwellers' efforts to obtain HIV/AIDS information/help from other people may be complicated by stigmatizing attitudes, limited local knowledge and gaps in health care and support services.;Semi-structured, in-depth interviews were conducted with 114 PHAs, their friends/family members, health care and service providers in three rural regions of Canada. A chain-referral recruitment procedure was used to elicit participants' HIV/AIDS information/help networks. Questions were also embedded in a longer telephone survey with a sample drawn from the general population in each region. Locally produced documents related to HIV/AIDS were gathered and analyzed.;Findings revealed that PHAs' personal information/help networks emphasized formal caregivers ("linking social capital") and family members and close friends ("bonding social capital"). PHAs frequently gained both emotional and tangible support from their bonding and linking social capital, but they usually received useful HIV/AIDS information from their linking ties. Friends/family members' networks emphasized bonding social capital, often including the PHA(s) in their lives as a key information source. Neither PHAs nor their friends/family members relied to a significant extent on casual friends or acquaintances ("bridging social capital") for any form of information/help. At a regional level, one of the most striking findings was that HIV/AIDS information/help networks lacked bridging social capital, with networks involving only a small number of closely bonded people and their formal caregivers. In each region, 8-10 individuals emerged as central figures in networks. Often these individuals were PHAs from the area who had assumed key roles in the facilitation of HIV/AIDS information/help exchange in their communities. Other central figures in these networks were specialist health care and service providers, many of whom were actually located outside the rural study area.;Due to the emotional distress and practical demands associated with HIV/AIDS. PHAs often experienced significant personal network change in response to the disease, such as through their choices to terminate unhealthy relationships or seek disease-specific helping relationships. With concerns about community members' stigmatizing attitudes, many rural dwelling PHAs and their family members disclosed their experiences selectively or avoided discussion of the topic. However, some PHAs and family members spoke openly about their experiences, stimulating information/help exchange in their own networks and beyond. Such activists were often affiliated with AIDS service organizations, which helped to establish HIV/AIDS information/help networks in rural communities, particularly the bridging social capital that was otherwise in short supply.;In rural environments marked by such challenges, it is unclear how people affected by HIV/AIDS are able to acquire information and help through their social relationships. In the research described here, I investigated the nature and structural characteristics HIV/AIDS information/help networks using social capital and social network theories to frame the analysis. I also examined how these networks were formed and sustained, and how information and help were exchanged within them.;PHAs and their friends/family members obtained information/help from their networks through four key interactive processes: exposure, opportunity, solicitation and legitimation. Although PHAs had highly geographically dispersed networks, they rarely used e-mail or online chat to discuss HIV/AIDS. Thus HIV/AIDS information/help was usually obtained by means of telephone or face-to-face contact.;The results of this study advance information behaviour theory by pointing to the interactive nature of information behaviour, and by raising questions about the capacity of social capital and social network theories to explain community-level information exchange. This research also suggests the potential value of new approaches to health information practice that focus on social, community-based issues such as stigma reduction, information/help network capacity and relationship-building.;Keywords: Social capital, social network analysis, network change, information sharing, information avoidance, stigma, HIV/AIDS, social movements, rural health.