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

We recruited a sample of persons who had previously attended lupus camp and their parents, including current pediatric campers (n = 5), former campers who have transitioned to adult care (n = 4), including one who served as a counselor, and the parents of current campers or counselors who have transitioned to adult care (n = 3). Participants were identified by reviewing a list of campers or counselors over the previous four years. Families with upcoming appointments who were felt appropriate for an interview were approached for consent. Lupus camp occurs yearly over a three-day weekend, during which 15 to 20 campers between the ages of 10 to 17 engage in both traditional camp activities (such as zip-lining, wall-climbing, crafts, fishing, etc.) and in an educational ‘ask-the-doc’ session with a pediatric rheumatologist. Campers also participate in various activities within their cabins, which are separated by age and gender and contain two camp counselors per cabin. Counselors are often former campers, Child Life staff (in-hospital professionals trained in helping children cope with stressful situations), or others with significant involvement in the lupus community.

After being informed of the study by their current or former physician, prospective participants were contacted by mail and then by phone to assess interest in participation. Participants were provided a modest compensation for their time ($30 debit card, which was reduced to $22.40 if they preferred not to disclose their social security number, in accordance with United States tax law). Institutional Review Board approval was obtained from the University of Texas Southwestern Medical Center (UTSW) and site approval granted from Children’s Health. Verbal informed consent was obtained from all study participants as approved by the IRB; all interviews occurred virtually in the early weeks of the COVID-19 pandemic.

Semi-structured in-depth interviews (n = 12) were conducted between March and June 2020 via telephone (per COVID-19 restrictions). A discussion guide was developed to query participants on their experience at lupus camp, skills learned, and how attending camp affected the psychosocial aspects of coping with cSLE (Additional file 1: Appendix A). A subset of questions was also geared towards an expected or realized transition from pediatric to adult care, which is addressed in a separate manuscript. The Qualitative Research Committee (QRC) at UTSW collaborated in this process, reviewing the guide for clarity and comprehensibility.

Interviews were conducted by a member of the QRC (JK) with formal training in qualitative research and facilitating one to one semi-structured interviews. Recruitment ceased among campers when thematic saturation was achieved, with little to no new concepts emerging through continued interviews [9]. All interviews were digitally audio-recorded and transcribed verbatim by a professional transcription service.

An inductive thematic analysis approach was used to identify emergent themes within the interview data. Transcripts were independently coded and analyzed using constant comparative analysis by two members of the QRC to identify salient themes and reconcile any coding discrepancies. They collaboratively developed and refined a coding dictionary throughout data analysis. NVivo 12 Plus software was used to manage findings during data analysis.

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.”

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.

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.

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.

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.