Carol has been involved in research since her diagnosis with HIV in 1988. She was pregnant at the time, and agreed to be part of a research study as a participant to test HIV medication. Ever since that moment, she has been an active research participant and partner in various roles and research approaches. She described some of the personal benefits that she has gained through her participation in research, including learning more about her illness and the opportunity to offer something back to research based on her illness experiences. She feels most comfortable joining in on projects where she can trust her research collaborators and be part of ‘closed’ groups, working closely with researchers but not as public sessions. She is currently part of a diverse group of about 10 patients who provide advice to researchers at a provincial level. Carol described how the research coordinator for one study that she was involved in was able to create a very positive atmosphere where people feel respected, appreciated and acknowledged. She feels that his excellent facilitation skills and sincere attitude have contributed to the creation and continuation of this advisory group. Carol feels that research findings need to be communicated better and disseminated faster.
Okay. I… seem to be repetitive in this, but it’s about having the, being relaxed, being honest, having empathy, using just so that everybody involved is in a relaxed state to go forward, because you’re not going to get the right information or results or anything if anybody is uptight, so it’s about the right team.
Interviewer:Anything researchers should never do?
Be judgemental. The researchers I’ve met with are just all so lovely, including you, but we do learn from each other and just be real. Nobody, none of us are better than the other, maybe one may have better education or this or that, but it’s about comfort, relaxation, expressing to each other what you expect from each other.
It’s basically all the same thing! It’s all different fancy words. You know. And, basically it all comes to the same thing, and it’s about communication. Getting answers, or input as to how to better deal with things that will come to us down the line from today, tomorrow, so, it’s about having the communication. Whether you want to use collaboration, or this and that, is about communicating and getting the right answers to the unknown questions, or having firmer answers in how to better deal, you know, and, yeah.
This most recent research survey I was involved with, one of the researchers came to me recently and they just thanked me because I brought up a lot of different issues that generally they’re not thought about, or how to say something better or make a person be relaxed.
We’re a multicultural world now, so they thanked me for my input, and more people are coming back to the clinic, they’re answering… be more comfortable within their own selves. So, having panels such as these, it does help.
Interviewer: It helps in the quality improvement…
It helps in the communication, in the treatment and therapy, it helps with how a person feels about themselves, really, because it’s not just that one person that is afflicted in whatever way, this is the way it is. So you can ease up and become more comfortable. People don’t want to be stigmatized or feel they’re being judged, being judgmental, so these questions have been put together in a way to make people be more relaxed and do the right thing for their health, for themselves, their families, and the public. That’s very important.
People in general, researchers, doctors, etc., were very accommodating to me. They didn’t have the information either, I was like, oh, this is special. It was basically that one time. That wasn’t too long ago, maybe two years ago, but no, I’ve always been approached with respect and people have valued my input, my information, my history. And uh, so, yeah. I like participating, because I also learn. I also learn about other people or ways or – life is a never ending [learn]. My dad always said, learn something new every day, even if it’s a word, you know?
Interviewer: That kind of leads me to the next question, because I was going to ask, you already said you’re learning, what are some of the benefits of being involved in the research, for yourself?
The benefits for myself is that I value the information I have given of myself to people that do need it. And, you know, there’s – I benefit that way. And, basically it’s just about being a human, giving human input, giving experience… and, well. The benefits. It’s just something I like. I like doing, I like being a part of, if it relates to me, if I could be valuable, yeah. That’s where I benefit from it.
To give the information and history that I personally have dealt with. And, so that it could be used in a beneficial way for others.
The benefits for myself is that I value the information I have given of myself to people that do need it. And, you know, there’s – I benefit that way. And, basically it’s just about being a human, giving human input, giving experience… and, well. The benefits. It’s just something I like. I like doing, I like being a part of, if it relates to me, if I could be valuable, yeah. That’s where I benefit from it. It’s not really the stipends we may receive really are not that great, you know. I’ve even told researchers, if it’s whatever topic, if it’s our commonality, why don’t you take us on as researchers, too? To do the research and development, setting it up into the system or dealing with like-minded people, people that have the same issues and that, because that also makes people more comfortable sometimes. Women, who do become pregnant and that, I’ve had women forwarded to me to give my input, you know? But a lot has to do with your lifestyle. Yes, you could have a child now being Human Immunodeficiency Virus (HIV) or Acquired immunodeficiency syndrome (AIDS), but you don’t do drugs, you consider your lifestyle and that – many times, if you want to be healthy, you have to live healthy, because what you put on or in your body will have an effect on your wellbeing.