Box 2.

Barriers and Facilitators to Participation

Knowledge

“Lack of knowledge. . . . I had no idea what I was getting into, . . . I had no idea what the medicines were either. . . . So basically, lack of medical knowledge of both the medicines and the diseases.” (Male, 14 years)

“Being involved in [the decision] and knowing . . . your options and knowing what you can do on your own to help other than medicine, like diet, drinking a lot of water, going regularly . . .” (Female, 16 years)

Experience

“. . . experience with it, having had UC for so long and like I know my body and I know what I’m feeling and I think sometimes you just know what’s best for you because you know everything you’re thinking, everything you’re feeling mentally and like physically.” (Female, 14 years)

“I wish I was as independent as all of you but my mom. . . . Because I want to make my own decisions just so I could feel more like an adult and that if I make the wrong decision, I’ll learn from that and if I make the right decision, I’ll keep going on that path.” (Male, 17 years)

“I’ve had to figure it out on my own what works for me.” (Female, 17 years)

“If anyone is going to know my body, it’s going to be me.” (Female, 17 years)