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Table 4 Navigating Health Care, Modeling Adherence

From: Therapeutic recreation camps for youth with childhood-onset systemic lupus erythematosus: perceived psychosocial benefits

Skills learned [Skills learned at camp include] taking her medicine timely, setting reminders of taking her medicine, writing down new things that occur so the next time she visits the doctor she will bring that up, and just taking cues from her body…[skills learned] mainly [from] her peers, but also her doctor. (parent)
Increased responsibility [Attending camp] had made her a little bit more responsible. [She now] actually answers the phone and sets up her own appointments. (parent)
Communicating with physicians Having a doctor comfortable [with] questions was nice because it made me aware that it is okay to bring them up or ask my doctor… I had never really known much about the medication I was taking [until then]. (patient)
Self-efficacy, independence [Attending camp] give[s] her the confidence to be able to communicate things that she’s learned about herself, her body, the condition, what works for her, what doesn’t work, and she’s able [to say] I think we need another approach…speaking on her own behalf. (parent)
Increased control of health I eventually had to tell [my parents] this is my health, I know what is best for my health, and I know how to take control of it. (patient)