Challenging Experiences – David


David’s team asked patient partners how they wanted to participate, enabling different approaches and a diverse project committee


So, we decided to do two focus groups, one with men, one with women, and talking with people, some people said, “Well, you know what,” especially there were women saying, “I want to participate with women because I want to speak as a woman, but I wouldn’t want to be in the committee with men.” She was speaking French and English, but it was definitely her second language, she was like, coming from another country and she didn’t feel entitled or she didn’t feel safe being in a group on a long-term basis talking about HIV with men and with people in another language. I think for her, the opportunity of participating in a focus group There were also people that were like, “Well, I don’t really mind,” and there were people, like, “I really want to make this committee. I want to be there. This is really important for me.” So, I also considered that when people were like, “Yeah, the focus group is more what I would like to do. I don’t want to be involved in the long-term because I’m really busy,” or whatever.

I would also listen to that when I made the selection. It really felt well because we were looking… we wanted to have the four groups that are often referred to as the key populations of HIV in Quebec, so men who have sex with men, women, people from countries where HIV is endemic, and intravenous drug users…IV drug users.

Listening to the people, how they wanted to participate, etc., we ended up with a group where all those groups represented. We had very different experiences in the group. People were… some people were really involved. There was one person that had just been diagnosed a few months before and was still, “I don’t feel really comfortable about talking about my status, but maybe this group is going to help me talk a little bit more and accept the diagnosis, or my new status.” So, very different experiences. Some people were really knowledgeable about research, some people were not at all, and we were… that’s what we wanted. That’s what we imagined the committee to be.

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