Journal Article

A multilevel model of HIV AIDS information help network development

Veinot, Tiffany

2010

Overview

Purpose - This paper aims to describe the personal information and help networks of people with HIV AIDS (PHAs) in rural Canada, and to present a research-based model of how and why these networks developed. This model seeks to consider the roles of PHAs, their family members friends and formal health systems in network formation.Design methodology approach - In-depth, semi-structured interviews were conducted with 114 PHAs, their friends family members (FFs) and formal caregivers in three rural regions of Canada. A network solicitation procedure elicited PHAs' HIV AIDS information help networks. Interviews were analyzed qualitatively, and network data were analyzed statistically. Documents describing health systems in each region were also analyzed. Analyses used social capital theory, supplemented by stress coping and stigma management theories.Findings - PHAs' HIV AIDS-related information help networks emphasized linking and bonding social capital with minimal bridging social capital. This paper presents a model that explains how and why such networks developed. The model shows that networks grew from the actions of PHAs, their FFs and health systems. PHAs experienced considerable stress, which led them to develop information help networks to cope with HIV AIDS - both individually and collaboratively. Because of stigmatization, many PHAs disclosed their illness selectively, thus constraining the size and composition of their networks. Health system actors created network-building opportunities for PHAs by providing them with care, referrals and support programs.Originality value - This study describes and explains an understudied type of information behavior: information help network development at individual, group and institutional levels. As such, it illuminates the complex dynamics that made individual acts of interpersonal information acquisition and sharing possible.

• Publisher: Emerald Group Publishing Limited,Emerald
• Subject: Access to information / Acquired immune deficiency syndrome / AIDS / Canada / Capital formation / Caregivers / Coping / Exact sciences and technology / Families & family life / Family roles / Friendship / Health care / Health services / HIV / Human immunodeficiency virus / Illnesses / Information and communication sciences / Information communication / Information dissemination / Information economics. Information policy / Information science. Documentation / Information Seeking / Information seeking behavior / Information Services / Interviews / Library and information science. General aspects / Mental health services / Network Analysis / Networks / Personal information / Political aspects : cooperation, coordination, standardization / Privacy / Regions / Relatives / Rural areas / Sciences and techniques of general use / Social capital / Social development / Social network analysis / Social networks / Social support / Social Support Groups / Stigma / Stress / Studies / Theory