Table 2 Themes and representative quotes

Motivations

“I really love finding out information. I love having a voice. I think I like the idea that research can move things forward and better life for families like mine.” (P3)

“The value of the research being conducted is so powerful to me, I’m totally fine to put it out. I’m not tapping on shoulders; I’m generally putting it out to some Facebook groups I’m part of as part of the community.” (P15)

Authentic Partnership

“Where I didn’t feel like our partnership was authentic, I didn’t feel like my contributions were being respected, I didn’t feel good about sharing [recruitment material for] those because I didn’t feel great that participation in that study… was going to be… effective or something I could really endorse.” (P5)

“The first barriers that I experienced were that nobody gave me a binder of what to do, what to expect, what is my role, what do words mean, what do all these acronyms mean, what is what, who is who and I really literally had to learn that accidentally and overcome my fear to ask really stupid questions.” (P6)

Learned Decision Making

“I would never post without permission, which is different than I did early on, and I have a lot of regrets about that, like I overshared, in kinda that… impulse to make change immediately.” (P5)

“I don’t know that I’ll ever get to a point where I’m like ‘I’ve mastered it, everything I’m doing is perfect, I’ve got the right balance of sharing and not sharing and maintaining privacy and not maintaining privacy’ like we’ll never get there, it’s just constantly evolving and a constant learning process” (P9)