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

Abstract

Background

The psychosocial burden of having a chronic disease can be substantial for adolescents with childhood-onset systemic lupus erythematosus (cSLE). Current literature is scarce on interventions that can improve psychosocial outcomes for this population. Therapeutic recreation camps have been proposed as a beneficial experience for chronically ill pediatric populations. However, their effective components have not been well characterized in patients with cSLE. In this study, we sought to understand the various components of the camp experience for adolescents with cSLE from both the patient and parent perspective.

Methods

We recruited patients with cSLE who had participated in one or more annual, weekend-long recreational lupus camp(s) near Dallas, Texas. Semi-structured in-depth telephone interviews were conducted from March-June 2020 with both the patients and parents. Questions focused on overall patient experience, psychosocial impact of camp participation, coping skills gained, and opportunities to prepare for the transition from pediatric to adult care. Interviews were coded and analyzed using inductive thematic analysis.

Results

We interviewed 9 current and former campers (ages 16–24), including a current camp counselor, and 3 of their parents separately. Reported benefits included a positive impact on social support through peer bonding, opportunities to develop coping mechanisms through structured activities and peer/medical staff interactions, opportunities for education about the cSLE disease experience, improved adherence through peer modeling, overall increase in self-efficacy, and better parental insight into the patient experience. Participants also provided suggestions for expansion and improvement in program development to optimize educational opportunities for both campers and parents. In addition, they advocated for longitudinal social support and community building.

Conclusions

In this qualitative study, in which cSLE patients and their parents reflected on their experiences with therapeutic recreation camps, we found several perceived benefits impacting the patient and parent experience. Participants expressed a desire for more educational opportunities that could contribute to their successful transition from pediatric to adult care. Further studies are needed to demonstrate the effects of therapeutic recreation camps on the psychosocial health of this population.

Introduction

Childhood-onset systemic lupus erythematosus (cSLE) is a complex, often aggressive disease [1] with implications for the psychosocial health and well-being of young people [2]. Health-related quality of life has been shown to be lower among youth with cSLE, especially among those with active disease and disease-related damage [3,4,5]. Few studies report on interventions with potential to improve quality-of-life outcomes in this population [6].

Therapeutic recreation camps have been proposed to enhance quality of life among youth with chronic illnesses [7]. There is evidence suggesting short-term psychosocial benefits of camps for children with chronic diseases such as diabetes, cancer, juvenile arthritis, and inflammatory bowel disease, including improvements in social interaction, acceptance, self-perception, and autonomy [7, 8].

To our knowledge, no research has focused on camps for youth with cSLE and their potential impact on the psychosocial health of these individuals. We report on the qualitative experiences and perceived benefits of lupus camps among a cohort of adolescents with cSLE, their parents, camp counselors, and former camp attendees who have now transitioned to adult care.

Methods

Setting and sample

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.

Data collection

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.

Data analysis

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.

Results

Fifteen people were invited to participate, all of whom agreed and provided verbal consent. Twelve were reachable via telephone and available for interview. We conducted twelve in-depth interviews averaging 43 min (range 25 to 66 min). 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. Participants were roughly representative of our patient population with cSLE (which is predominantly female (86%), 43% Hispanic (of any race), 35% non-Hispanic Black, 15% non-Hispanic White, 7% non-Hispanic Asian, and mostly publicly insured (61%)). 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 Social Support

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 Effect on Coping

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

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

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

Table 6 Suggestions by Patients and Parents

Discussion

In this study we describe the experience of current and former campers and several parents with a therapeutic recreation camp for children and adolescents with cSLE. The perceived benefit to attending lupus camp occurred in several domains, including improved social support and peer bonding, an opportunity to build coping resources, to interact with medical professionals and to observe medication adherence. Participants reported improved knowledge surrounding cSLE, and parents felt they gained insight into their child’s illness experience. Suggestions for expansion and improvement were described.

Our finding that lupus camp provides opportunities for social support and improved disease knowledge is consistent with the available literature on therapeutic recreation camps. One study of a residential summer camp for children with malignancies confirmed the highly supportive environment of camp, with participants reporting more emotional/informational support/esteem-enhancing support, and tangible support compared to the general population [10]. Connectedness with peers has been shown to mediate the relationship between psychological adjustment and optimism among children with chronic illnesses [11]. The opportunity to build coping skills was highlighted by participants of our study and is a theme echoed by others. Residential camps for children with diabetes identified several psychosocial benefits, including a decrease in distress and improved independent self-care [12], self-efficacy [13], self-perception, and resilience [8].

Attending therapeutic recreation camps has been associated with better health-related quality of life [8] and disease outcomes [14], though the specific underlying reasons for these outcomes have not been fully elucidated. Our participants suggested that camp provides an opportunity for participants to observe and model adherence and to interact with medical staff, which may facilitate optimal healthcare interactions outside of the camp setting.

Adults with childhood-onset SLE are at risk for long-term adverse consequences [15], and the transition from pediatric to adult care is a particular vulnerable period for emerging adults [16]. Complex interventions are needed to address the needs of this high-risk population, and camp may provide an opportunity to enhance transition-related skills. Multicomponent interventions have been successfully introduced through a camp-based program among children with other chronic illnesses, including those with type 1 diabetes, with subsequent improvement in glycemic control and parental stress [14]. Whether similar strategies could improve cSLE transition outcomes deserves further study.

Limitations of this study include that it was conducted among a small number of former and current campers and their parents from one major metropolitan area. Findings reflect their experience with one specific lupus camp, and generalizability is thus limited. The experience of participants in this study may not reflect all campers’ experience and is by necessity subjective. Those who attend lupus camp may also be fundamentally different from those who elect not to participate or who are not eligible to participate due to the severity and unstable nature of their illness. Additionally, recruitment was limited by financial constraints. Interviews occurred during the beginning of the COVID-19 pandemic, and how the decreased ability to socialize with peers influenced recall and responses is unknown. Qualitative studies are meant to be hypothesis generating; further research is needed to corroborate these preliminary findings, including among participants from other lupus camps. Future work should aim to quantify improvements in psychosocial benefits including validated questionnaires that measure changes in independent self-care, self-efficacy, resilience, and health-related quality of life [8, 12, 13].

Conclusion

Several important implications can be drawn from this work. Recreational lupus camps may be an effective avenue to improve the psychosocial well-being of children and adolescents with cSLE, with the potential for improved social support, peer bonding, coping, self-efficacy, disease acceptance, and educational opportunities. The effect of camp on participants’ interactions with medical staff and the healthcare system requires deeper investigation, and how best to expand the camp experience and incorporate it into clinical care should be explored.