Table 5 Insights into the Patient Experience

Parental insight into child’s experience It’s good for a parent to go…to see my child be a lot more comfortable and open and you find out their insecurities or whatever bothers them that you didn’t know because they won't really tell you and you find out just by listening in and you’re like- oh my gosh, [I] never [knew] that. So I think that every parent should take the opportunity to go with their kid. (parent)

Opportunity for friends to learn about lupus I’d strongly recommend [going to lupus camp]. I would talk about it really positively to my friends who didn’t fully understand my illness… they always seemed supportive [and] curious about my illness and [then] tried to understand it. (patient)

Family understanding …teach the family to understand them because sometimes they [are] really sick, and we try to see them as normal, but I we don’t know how they feel [even though] as family [we] try to understand them. (parent)