HIV futures five: life as we know it

From the introduction: With the increasing availability of antiretroviral treatments in many parts of the world has come increased surveillance of the lives and behaviours of PLWHA. In part, the concern of much of this surveillance has been the monitoring of antiretroviral compliance and sexual practice. While small scale research and advocacy has examined the extant lived experience of positive lives, this has rarely been on a scale that allows national planning of service delivery and social reform. Some research (for example Anderson and Weatherburn 2004, EMHF 2005) has provided national data on the broader social aspects of PLWHA’s lives, but the bulk of research, limited by funding and infrastructure, has focused on limited aspects of either clinical or social experience. The specific nature of samples obtained in a number of studies concerning the well-being of PLWHA has also limited their utility, both in terms of planning and advocacy. Data obtained from clinical samples generally tend to over-represent the more problematic aspects of living with HIV, both clinical and social, and data obtained solely from community convenience samples tend to over-represent both service utilisation and community engagement. While we do not presume to have obtained an entirely representative sample through our methodology, we do believe that the broad sector involvement in both promotion and recruitment for this project has given us one of the most comprehensive pictures of life with HIV in Australia. This is important for service providers, in that it gives them an understanding of the diversity of positive lives beyond the clients that they most commonly see, and it gives them some sense of the lives of their clients that they may not generally encounter. Similarly for clinicians, this diversity offers some context into which they can place the health behaviours of their patients. Understanding the social context of a treatment break may be just as important as understanding its clinical consequences. For health and community planners, appreciating the range of ways in which HIV has an impact on people’s lives allows a more considered approach to the building and maintenance of services, legal reforms and community education