Fifteen people were invited to participate, all of whom agreed and provided verbal consent. Twelve were available for interview. We conducted twelve in-depth interviews averaging 43 minutes (range 25 to 66 minutes). Patients and parents were interviewed separately. Participants had the following demographic breakdown: all women, 8 Non-Hispanic Black, 3 Hispanic of any race, and 1 Non-Hispanic Asian. Pediatric campers ranged from 16-18 years of age, while former campers (now in adult care) ranged from 20-24 years of age. Most campers had participated in lupus camp more than once and the gap between camp participation and interviews ranged from six months to three years.
We identified several themes surrounding attendance at lupus camp, including social support, effects of lupus camp on coping, opportunities for learning and education, adherence and navigating care, insights into the patient experience, and suggestions for expansion and improvement.
Social Support
Social support emerged as an important theme and a leading reason for attending lupus camp (Table 1). Shared experiences among campers and between campers and counselors provided a basis for social connectedness. One parent found that after attending lupus camp, her daughter “had a better understanding that she was not by herself, and looked forward to going back [and sharing] her story with everybody else.” Participants recounted an inclusive environment where “[we are not] criticized for being open,” and other campers represented “the people who will most understand you.” Attending camp was described as a safe outlet for feelings and a way to normalize the experience with lupus: “[we both went through] something that was so traumatizing [lupus flare]…but they’re recovering [too]…I’m not alone.” Several participants spoke to how social support and sharing their experiences allowed them to cope with lupus-related difficulties and empowered them to persevere. There was a general understanding that “[the other campers] got your back and everything will be okay.” One counselor was encouraged to see campers being “proactive, taking initiative [to inspire] each other on their own.” Ongoing engagement with other campers after the conclusion of camp through phone or social media allowed some participants to consider they “have connections from camp to rely on.”
Table 1
| 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) |
Effect of Lupus Camp on Coping
Participants spoke to the respite that lupus camp provided, such that, paradoxically “[at camp] I don’t have to always think about lupus.” Campers are afforded the opportunity to enjoy the weekend and build their coping resources (Table 2). Participants recounted greater acceptance of their disease, enhanced confidence to do ‘normal’ things, and tangible actions they learned to help manage stress or improve their sense of control over their illness. Parents noted an increase in self-efficacy and felt their children had “a little more confidence about themselves” and began to learn “to stand up or speak up for [themselves].” Several participants correlated overcoming the fun challenges at camp (such as obstacle courses or rock climbing) with a metaphor for life and felt these gave them a different mindset when returning home. Participants were grateful for the opportunity to explore their identity outside of lupus.
Table 2
| Control over identity …to be who you are, and own lupus, don’t let it own you…[learned from] the campers [who had lupus for] longer being their own person, [and continue to be] who they are… (patient) Acceptance [Lupus camp] got me out of my shell because I knew people were like me around me, so it helped me with my accepting having lupus. (patient) Cognitive reframing of limits They would always have us doing a lot of active work like [rock climbing and even zipline], and it helped in a way… we might be considered weaker because of our immune system, but [we don’t] have to let that take over us… it helped me get in the mindset of- oh, I might feel like I’m a lot weaker, but I can still do all of this stuff. (patient) Action over Fear I know how to take control of [my health]. I can’t be scared of the sun all the time… I love that [we teach campers to use] sunscreen to protect yourself [and] not be scared. (patient) Positive outlook …after the first camp, she had positive outlook on things and she was able to hear others’ experience with it [and] become more aware of what was possible …and that [lupus] could be managed and that she could have a full life not hindered by her lupus… (parent) Courage, metaphor for life …it’s more of a mindset thing, but what excites me about the obstacle course is that it puts a lot of pressure on your body… and it’s a motivator because it’s really an accomplished feeling when you’re at the top … I always feel a sense of determination- I have to do it. I have to show the younger kids that I’m not scared, though I am definitely terrified. (patient) Confidence, learned skills …she got more confident [after coming back from lupus camp]. She was able to take someone else’s experiences [and] how they handle certain situations and …do some of that in her life and make some changes, and she benefited from it. (parent) |
Opportunity for Learning, Education
Camp provided educational opportunities on various aspects of living with lupus (Table 3). Informal conversations among campers and counselors allowed for learning from shared experiences and complimented a more formal educational “ask-the-doc” session. Participants “especially liked the …ask the doctor sessions [where] anonymous [questions could be asked] and answered” in a more comfortable, intimate space for group dialogue. Through different modalities, participants felt more informed about lupus symptoms, healthy eating, medications and their side effects, and the importance of medication adherence. Transition-related topics were also addressed and camp counselors, who were previous campers, provided insights into their experiences in adult care.
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) |
Navigating Health Care and Modeling Adherence
Campers and their parents discussed how skills learned at camp impacted them (Table 4). Improved medication adherence was one potential benefit as described by a parent: “she was very proactive in taking her medicines [after going to lupus camp and was] also aware of the timings that she would take her medicine.” Campers reported sharing tips for pill-taking and advice for staying organized. Modeling of medication adherence by other campers and by counselors occurred, as did interactions between campers and the healthcare team, which was reported to facilitate communication and foster greater collaboration in clinical settings.
Table 4
Navigating Health Care, Modeling Adherence
| 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) |
Insights into the Patient Experience and Suggestions for Expansion and Improvement
Parents felt they gained valuable insights into their children’s illness experience through camp-mediated conversations (Table 5). While all those interviewed spoke highly of the camp experience, patients and parents also cited opportunities for further program development (Table 6). Parents welcomed educational sessions targeted at helping them understand lupus and sharing strategies with other parents about how to cope and help their children cope with the challenges of managing SLE. Campers and counselors were interested in an organized method of ongoing engagement with other participants throughout the year. They expressed interest in hearing from physicians of other specialties and adults living with SLE, as well as having a structured platform for continuing social support. One cited ‘big brother/big sister’ type programs as a potential model to provide continued support and expressed a desire for camps aimed specifically at transition-aged persons. Participants also suggested that community organizations such as the Lupus Foundation were well positioned to organize events aimed at patients and their families.
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) |
Table 6
Suggestions by Patients and Parents
| Camp for transition-aged youth I really wish there was some type of transition camp for young adults [with lupus] transitioning into adult care… (parent) Events for parents I would be the first one in the door [for an event for parents] because I would like to know how to handle certain situations, especially when this transition happens. (parent) Information for parents …the information that I received [as a parent] was so broad and so frightening [it was] overwhelming…more education for families [would be nice]… just helping them to realize there are children [and] other parents experiencing the same thing…what did you do to cope with this and help your child cope, what did work, what didn’t work… (parent) Shorter meetings between camps …other camp-type [events] could be sponsored throughout the year … bringing in other doctors from other areas… like guest speakers or specialists not just about adult healthcare [but also] just handling lupus from a different perspective. (patient) Keeping in contact There should be little texts sent out or even little Zoom meetings for us to keep in contact with each other and the doctors could see us throughout the year. (patient) On hypothetical meetings occurring between camps …at the beginning of the meetings new people [would] hear from the doctors and the more experienced lupus patients or bring in people [with] lupus and [explore] career [and family] goals and show us we can do things… (patient) Big brother, big sister …maybe a big brother, big sister program …where the older lupus kids can sponsor a younger one throughout the year… (parent) Engaging community organizations Maybe [there can be] more involvement [of organizations like the] Lupus Foundation… because I personally am passionate about lupus and helping others who are struggling with it, [who] went through what I went through. (patient) |