Role determination


Clip #1

Frank: I think before the group got going our role should have been explained to all the researchers. I think the resentment/tokenism approach that some researchers took would have been mitigated somewhat, if they knew why we were there. I’ve had it said to me "what could you possibly add to a research group". So, I knew then that our role hadn’t been explained to them  or that they just didn’t get it. I'm not sure what the problem was. It wasn’t all of them. It was just a few but it put a damper on our experience.

Clip #2    


Rhene: There should have been some discussion ahead of time. 

Frank: It was never defined.

Rhene: Well, as I said, we were just told that all we had to do was attend the quarterly meetings.

Frank: - Show up and … 

Rhene: - meetings sort of thing and … 

Frank: We were encouraged to jump in at any time but you feel so stupid because you have no idea what they’re talking about and what am I going to jump into. So, it took a while to get over that hurdle. So we could have better participated and maybe that should have been better thought out. Not all the patients and caregivers have the same education as the researchers. It is not what they do. They're from all walks of life. We have academic backgrounds.

Rhene: - I have a medical background. 


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