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Personal Perspective: The Good Stuff

Spring 2004

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

In 1775, Samuel Johnson, the British writer, said, "Knowledge is of two kinds. We know a subject ourselves, or we know where we can find information upon it."

I'm the consummate information junkie, always on the prowl for the most recent, cutting edge information. As an HIV treatment educator, I often say in my workshops that we're drowning in information yet still starving for knowledge. We need to sift out the good from the bad. Good treatment information sources are vital, and our work couldn't be done without them. It really bothers me when I hear information repeated that doesn't have a bit of truth to it.

I first became interested in being an educator when I took an "AIDS in America" class in college. I was so blown away by what I heard, so touched and moved, that I tried to teach anyone who would listen to everything that I had learned. A few months later, my brother, who had been estranged from my family for about 15 years, showed up at my dad's doorstep and announced that he had AIDS. My dad freaked out and treated my brother like a leper. At first, I was extremely hurt by my dad's reaction. Then I realized that it was based on fear, and the little information that he had about HIV/AIDS was wrong. I pulled together all the information from my "AIDS in America" class as well as some information I got online and sat down with my dad to educate him to the best of my ability at that time. My brother lived for only two more months, but during that time, my dad was his biggest support. Many of his fears were put to rest due to our talk, and I've wanted to be an educator from the moment my father thanked me.

I've been a treatment educator for a year and a half now, so by most standards I'm still considered a "new jack." Part of being a good educator is the commitment to deliver practical, relevant information and a willingness to learn from others. So I make it a point to tap into the treatment resources of my co-workers, especially the more seasoned ones, because they have a good handle on which resources are reliable and up-to-date. My clients are also a source of treatment information; I learn from them and benefit from their knowledge, even as they learn from me. Being an information junkie, I love sifting through various resources. I'll spend hours on a search engine, reading and comparing information. I take information to co-workers to compare what I've found with the information they have on a particular topic.

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I love to get the complete research article, but sometimes I can only find the abstract, a short summary of the article, including the background and reasons for the study, the methods used, the results, and the conclusion. Since the abstract isn't complete -- and sometimes inaccurate because it may have been written before the study was completed -- further research often reveals more than what is stated in the abstract. Because of this, I try to get a good amount of information that supports the abstract before I pass that information on. Literally, I sometimes spend all day researching an issue, comparing information. My day is really made when I find contradictory information. I compile articles and abstracts from different conferences, then go to the online sites that I've grown loyal to and sites I come across using a search engine and examine all of the data critically.

I look for specific things in the treatment resources I use. I lean toward resources that give me a personal perspective. When presenting a topic, I often learn additional information from the workshop participants that is critical to a more complete picture. For example, while getting ready for a workshop on women and HIV, I prepared lots of clinical information about human papillomavirus, cervical cancer, and Pap smears. There I was, about to deliver all of this heavy-duty information to the group of women, thank them for attending, and leave. But as I was getting ready, I felt that something more personal was needed, so I conducted some further research and compiled a list of issues that would put a personal spin on the clinical information. I love statistics -- numbers paint a picture for me, and I thought that including them in the workshop would bring the information home to the women. It wasn't easy to find this information online, so I kept searching until I came across a source that helped me make my presentation more complete. African-American and Hispanic women are disproportionately infected by HIV/AIDS and these are the women I work with. I must allow discussion of issues of economic independence, sexual empowerment, stigma, discrimination, and more in order to bring it full circle. The women in the workshop had so much to say about these personal issues. It opened the door so wide that we were able to look at the clinical information with more insight; we were able to talk with great candor.

I also look for resources that are intelligent and adult. I don't like information that underestimates the intelligence of the readers or uses cartoons. Even the most basic information for people with limited HIV knowledge can be presented in an intelligent, adult manner. I think this preference comes from my work in case management. It always bothered me to see adults being treated as though they were children by caseworkers, doctors, or other service providers.

I once was at an AIDS service organization to conduct a staff training when a staff member came into the room and said, "Here's Lisa with the good stuff." That really made me feel good. Another time, while I was conducting a workshop about sexually transmitted diseases, a question came up about curing syphilis -- a participant disagreed with what I was presenting. I welcome stuff like that. First, I re-read the information I had presented, then I conducted a further search, read through information from reputable sources, and then I consulted a co-worker who has been providing treatment education for many years and has personal experience with syphilis. After I was satisfied with my various sources, I revisited the topic in my next workshop with the group. It turned out that my original understanding was right, but it was worthwhile doing further research into the subject so that I could have a better discussion with the participant who had disagreed with my information.

On the flip side, a participant once questioned some information that I was presenting about the effect of heroin on HIV disease progression. I spent days searching for data to support what I had stated. Although much of the information I found was suggestive of my original understanding, I couldn't find anything definitive. I consulted my co-workers and supervisor. After picking their brains, I decided to revisit the topic and retract my statement until I found more concrete information.

The bottom line is that I try to be as diligent as possible in choosing good treatment resources so that I can keep bringing "The Good Stuff."

Lisa Frederick is an HIV Treatment Educator at ACRIA in New York.


A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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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.
 
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