Table 1 Social Support

Shared experiences They got to share their stories and that really helped her to come to grips with I’m not by myself, somebody else is experiencing arthritis, somebody else is experiencing the rashes… (parent)

Bonding, understood …they all understand [and] can sit around and talk to each other about their insecurities and how they feel and no one judges them …finally I have an outlet where I can talk to someone that knows exactly how I feel and I don’t have to constantly explain… (parent)

Social support …it’s very positive and fun and exciting … it’s just real life, and they’re just letting you know that- hey, you’re not in this alone. There’s other people out there and they can actually help you get through a hard time in your life because it’s very hard knowing that you have an incurable disease and how to deal with it…[and others can] give you tips and pointers and ideas on how to maybe change some things up… (parent)

Normalizing: [Lupus camp] was like a breath of fresh air. I felt normal to be with other people going through the same thing I go through. (patient)

Empowered They’re gonna make new friends, sometimes life-long friends…You get to be in an environment where there are other people that are experiencing the same things that you are and it could be motivating for you to live your life to the fullest without being hindered by lupus or having the thought of being held back because of the lupus. (parent)

Ongoing engagement …personally it did help me having other people with the same illness … being able to compare the things we went through and just not feeling alone with the illness [because] it feels like really alone. So it was nice to have other people I could talk to and even exchanging numbers and stuff with some of them so I could keep in touch. (patient)