Marc is an experienced caregiver who has collaborated with various research teams; one of his personal goals is to help improve care for patients and caregivers. Marc describes his collaborations with researchers as cordial, sincere and respectful in nature. At times, however, Marc has felt that his knowledge and experience were not adequately acknowledged by researchers. He believes it is important that researchers invite patients and caregivers to share their knowledge and experience and contribute equally as part of the team. Marc sometimes feels intimidated by the expertise of the researchers he works with on projects. For example, during a presentation, Marc used humor to let the audience know that he does not have research credentials, but that he brings his lived experience as his contribution. He now realizes that he should not have felt embarrassed that he did not have similar credentials as the researchers and feels proud of what he contributes to the research project. Marc believes that although patients and caregivers may feel their contributions to be relatively small, each contribution adds up and helps to create successful research outcomes. Overall, Marc feels that being a partner in research is an enriching and fascinating experience that can be full of surprises. He hopes to be involved for another few years and encourages anyone interested in getting involved in research to just go for it. 



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Clip #1

Interviewer: How do you make a balance between the time and your engagement?      

I am at a stage in my life where I have more choices, freedom of choices in my commitments and my involvement. Research is important to me. So, every time I am given the opportunity, I find the time quite easily. Not as if I had a full-time employment. Now that I am part time, I have much more time. Even when I was working full-time, I always managed to set aside some time for research because I always felt that it was important.

Clip #2


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Interviewer: And which aspects have made the involvement more difficult? Were there any factors?

I would say when I was working full-time, meaning when I was a full-time caregiver, during more turbulent life periods in terms of physical health for the care recipient and mental health on my part, because it stirred my emotions and it was destabilizing for me to always give, give, give. Well I occasionally had periods of depression, anxiety related to my friend that I was helping and that I liked. So, I was scared for him. And therefore, I had moments when I was depressed, and this is why participating in research during the more tumultuous periods was a little bit more difficult for me. But it shows how important it was for me to participate in the research because I always felt that it was important. So even during the turbulent periods I agreed to collaborate. Because the researchers really have ethics and are conscious of doing a good job with a lot of respect for the caregivers.

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It is important to know the level of relevance, for sure, the more the research team… The more the research team tells the caregivers about the repercussions that they may have or the level of collaboration that is relevant, the more information concerning the level of collaboration and the repercussion that it may have, that will increase the motivation of other caregivers to get involved. Of course, we have the impression that we are very small in the research field which may seem very vague at the beginning, during the first experiences. And the more we collaborate in various studies, the better we understand the sense of research, of our role within these studies. But I must say that it is important to know the level of collaboration that is needed. To be told and explained the… The repercussion, I mean. Meaning to be explained what we are contributing, to concretely know what the outcome could be in the end. That’s it, we have the impression that we are in a big… Well, it is a wide field, but the more we are clearly and precisely being explained, not only our role, the level, but also the impact, the better it could be.

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Interviewer: What makes you want to stay involved?

It’s the same thing for me, it’s an enrichment for me, so for sure… And I find that, for me, it reflects important things that we must really consider. It’s crucial! To give the opportunity to the people who are living it on a daily basis to express it, it can only be positive in the end. It can only enrich the healthcare system and enrich the resources to the caregivers that are living a life that is not easy. It can only be positive, not only for my personal enrichment but also and mostly for the caregivers that are experiencing difficult circumstances.