HIV Treatment Education in 2002
My experience providing community-based treatment information has come from working as a researcher and educator with persons with AIDS societies in Canada and in Mexico. I take a holistic approach to treatment education, one that aims to encompass the whole person and the whole treatment regime -- conventional medicine (including antiretrovirals), nutrition, and complementary and alternative therapies. I have participated in treatment information workshops, written about treatment for community publications, trained people living with HIV/AIDS (PLWHAs) to offer treatment education, and done one-on-one treatment information counseling.
Perhaps because of my integrated approach to treatment, one-on-one treatment information counseling has been the richest learning experience for me. Face-to-face contact is important, because treatment counseling is more than an information exchange. For many people, beginning to consider and learn about treatment is an important step along the journey of accepting that they are infected and beginning to live with HIV. The empathy and depth of experience that people living with HIV/AIDS can share with each other increases the value of peer driven treatment information counseling.
Regardless of whether or not the treatment information counselor is a peer, talking about treatment should include the social, economic, cultural and psychological issues that surround living with the virus and taking treatment: how much money do you have?, where do you live?, what do you eat?, do you have a fridge to store your meds?, do you live with a partner or family?, do you have kids?, do they know you are infected?, do you work? etc. etc. etc.
Perhaps these "lifestyle" issues are particularly relevant for marginalized populations. In Canada, I worked mostly with current and former injection drug users living in the Downtown Eastside of Vancouver, known as "Canada's poorest postal code." In Mexico, I work with HIV-positive women. These women are a diverse group, from rural subsistence farmers to business women living in the world's largest metropolis. But they share some characteristics -- almost all of them have children and most are AIDS widows. The majority of former and current injection drug users and Mexican women face challenges to accessing and understanding treatment because of literacy, poverty, and (real or feared) stigma and discrimination in their relationships with healthcare providers. Communicating treatment information can be difficult because of these challenges, but these difficulties only underline how urgent it is to develop and implement appropriate treatment education strategies within these communities.
My philosophy is that everybody has the capacity to learn about treatment and to act in their own best interest. I want to be emphatic about this -- people who haven't completed elementary school can understand the mechanisms of pathogenesis and antiretroviral treatment. And, to give informed consent and make informed decisions, the individual must understand these issues. In addition to the ethics of informed treatment decision-making, knowledge is crucial for treatment success.
Adherence is a good example of why treatment information is important. People need to understand why taking their meds as prescribed is important. This is especially key for individuals who do not have open communication relationships with their treating physicians or other healthcare providers. Let's imagine the case of a Canadian IDU whose physician makes participating in a methadone program a condition for receiving antiretroviral treatment or a Mexican woman without social security who is one of the few "lucky" people to receive free antiretrovirals at a public hospital. Each of these individuals is motivated to lie to healthcare providers in order to appear the "perfect patient" and maintain access to treatment. But even "perfect patients" have their off days, so when these people go on a binge and don't take their meds, or if they discover that stopping the meds stops chronic diarrhea, and no one has explained (in a way they understand and accept) that stopping and starting can create resistance, they will not adhere, and they will not share this information with the treating physician.
Community-based treatment information programs, particularly programs in which HIV-positive individuals provide information to other positive individuals and the counselors and information seekers are members of the same "community" (as defined by race, class, gender, sexual orientation etc.), can explain concepts in a language that people really understand. Further, community treatment information counselors have more time and, often, more practical strategies for coping with treatment in the context of real life than is available in a clinic, doctor's office, or hospital. The community-based treatment information counselor's role is to be an instrument -- not to play doctor or make decisions or predict that the other person's disease process will be the same as theirs -- but to use the tools, experience and knowledge that they have to support the individual PLWHA to make informed treatment decisions.
Tamil Kendall, M.A. is a researcher for the Centro de Investigación en Sistemas de Salud, Centro Colaborador ONUSIDA, Instituto Nacional de Salud Pública, Cuernavaca, Morelos, México.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.