Table 3 Opportunity for Learning, Education

Learning about lupus …now I know more …I understand a little bit more about [lupus]. (patient)

Symptom management from others with lupus The counselors [told their story] and … a lot of us all shared the same symptoms… they taught me how they deal with [lupus], and sometimes I utilize what they taught me, and it helps me. (patient)

Education on medication It was nice at least hearing more about it [prednisone] because I had never really known much about the medication I was taking. (patient)

Sharing pointers on medication adherence …so I explained [to fellow campers that] when I first started taking medication, I was really bad at swallowing [because] the taste of the medication would stay in my mouth, so I mentioned how I would always eat a lollipop or something right after I took a pill so I didn’t have to deal with the taste in my mouth. (patient)

Preparation for transition With me getting ready to leave [pediatric care] they were giving us advice on how to be prepared…[including advice about] insurance and what can we do to stop [flare ups]…[I talked] to counselors and nurses and doctors while at camp [about] what to expect and …it was helpful. (patient)

Sharing advice She couldn't wait to get back out there now on the opposite side [i.e. as an adult]—she enjoyed helping someone else know how she got through the whole process. (parent)

Opportunity for more frank education When they’re all sitting together, the doctors could emphasize how important it is for them to take and know their medication and the side effects … And it would give the kids an opportunity to say- what if I stop taking mycophenolate? And I’d like for it to be in a safe place, a place of comfort where they can feel free to ask that question and get an answer answer, not just something blown off. (parent)