According to Health Canada there are an estimated 56,000 people living with HIV/AIDS. More than 2500 people actually diagnosed in 2006.
Not all live in cities. How these people obtain and exchange information in rural communities provides some interesting insights on how these marginalized and still stigmatized people seek information and use technology.
This Action for Health research was published in The Canadian Journal of Information and Library Science in 2006. The lead author was Dr Tiffany Veinot of the University of Western Ontario with help from a team consisting of Drs Roma Harris, Leslie Bella, Irving Rootman and Judith Krajnak.
To set the scene, the authors outlined their assumptions: that individuals with HIV/AIDS would go to other people first (as opposed to going online), that there would be seeking emotional support in addition to the information they were looking for, and that they whenever possible they would not go to strangers, such as someone in an institution.
We tend to simplify our ideas about how people obtain help and information about their disease conditions. So for example, we think of one person, going online, obtaining what they need for themselves. The reality is quite a bit more complicated. We know that people often go online on behalf of others (a mother looking for help for her children, or perhaps her partner). But people with HIV/AIDS have additional problems. They want privacy, particularly in rural areas. They need reassurance, sometimes even to the point of being told no, you’re not going to die from this flare-up. And they need emotional support. HIV/AIDS is not a problem that’s going to go away, people live their entire lives with the diagnosis.
While one might expect that medical experts would play a key role in the delivery of this kind of information and support, Veinot and her team found otherwise. They identified social workers and counsellors as key people—ones that could not only provide the facts but could empathize deeply. Even friends were not always helpful. Many have a so-called “cure” or perhaps they are misinformed, motivated by commercial interests. Good intentions perhaps, but not the kind of help those with HIV/AIDS need or want.
One of the most interesting aspects of the study was that private citizens, often people with HIV/AIDS themselves, acted as gatekeepers in rural areas. One person assumed the role of gathering information, and then went on to inform others in the community, even their families. This was the person that was plugged into the Internet, something researchers term an “information intermediary.” But these people did much more.
Veinot and her team found that gatekeepers arranged things such as referrals to medical care. They helped with information about income support, provided reading material, gave advice on home remedies that seem to work for specific problems, and even introduced one person with HIV/AIDS to another. This gatekeeper was a trusted person at the hub with others like the spokes of a wheel. The authors of this study said that they act as sources of health literacy for others.
So why would someone assume the role of gatekeeper? The authors suggest that these people are motivated, good at obtaining useful information, are organized at maintaining personal libraries, and skilled at developing networks of useful contacts.
Unlike other forms of health care information which stay relatively constant, the specialized nature of HIV/AIDS requires a lot of background information and an ongoing effort to keep up with new developments. Not even family doctors know the score, the may refer to a specialist in the disease. This is why AIDS service organizations are so valued, and the gatekeepers—experts of a sort– used those services as well.
While this system seems to work well, it does not solve all the problems these individuals face. For example, obtaining information through this type of gatekeeper network doesn’t help with breaking down stereotypes about AIDS. People in the community never get educated. The strengths and weaknesses of this type of social networking have yet to be well understood, a ripe area for research.
The key issue appears to be able to understand how and why people develop patterns of information and retrieval through connections with others, something this research uncovered. Then, building on those models might help us understand what’s going on which in turn might improve the lives of the many forgotten people living with this illness in rural pockets everywhere. Just because these gatekeepers exist, doesn’t mean that people connected to them are benefiting as much as they could be. Everyone is a part of a family, has a circle of friends, and belongs to a community. Only when all are involved will people living with HIV and AIDS benefit fully—no matter where they live.
People have long used mathematical type software programs to analyze numerical data in research studies. But qualitative research which deals with more descriptive results—for example an interview as is the case in this study—is a little harder to plug into a computer. But it’s being done. The software develops patterns, helps researchers understand themes and concepts, and synthesizes what is going on in the process under study in ways that would be hard to do by simply reading and re-reading the material. It can also enhance credibility, as two researchers go through the same data and come up with the same answers to research questions.
Questions? Contact Guenther directly at: gkrueger@knowitallhealth.com