University of Texas Southwestern Medical Center, Dallas, Texas, USA.
Texas Scottish Rite Hospital for Children, Dallas, Texas, USA.
Pediatr Rheumatol Online J. 2022 Jun 7;20(1):39. doi: 10.1186/s12969-022-00702-w.
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.
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.
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.
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.
患有慢性疾病会给儿童期起病的系统性红斑狼疮（cSLE）青少年带来沉重的心理社会负担。目前，关于能够改善这一人群心理社会结局的干预措施的文献很少。娱乐治疗营被提议为慢性疾病儿科人群提供有益的体验。然而，它们在 cSLE 患者中的有效组成部分尚未得到很好的描述。在这项研究中，我们试图从患者和家长的角度了解 cSLE 青少年参加娱乐治疗营的各种体验。
我们招募了曾参加过德克萨斯州达拉斯附近一个或多个年度周末长娱乐狼疮营的 cSLE 患者。2020 年 3 月至 6 月，对患者及其家长进行了半结构化深入电话访谈。问题集中在患者的整体体验、营地参与对心理社会的影响、获得的应对技能以及为从儿科到成人护理的过渡做准备的机会。对访谈进行了编码和分析，采用了归纳主题分析。
我们单独采访了 9 名现在和以前的营员（年龄 16-24 岁），包括一名现任营地辅导员，以及他们的 3 位家长。报告的益处包括通过同伴关系建立对社会支持的积极影响，通过结构化活动和同伴/医疗人员互动发展应对机制的机会，获得关于 cSLE 疾病体验的教育机会，通过同伴模仿提高坚持治疗的意愿，整体自我效能感提高，以及家长对患者体验的更好理解。参与者还为扩大和改进方案发展提出了建议，以优化营员和家长的教育机会。此外，他们提倡长期的社会支持和社区建设。
在这项定性研究中，我们采访了 cSLE 患者及其家长，了解他们参加娱乐治疗营的经历，发现了一些影响患者和家长体验的感知益处。参与者表示希望有更多的教育机会，这有助于他们成功地从儿科过渡到成人护理。需要进一步的研究来证明娱乐治疗营对这一人群心理社会健康的影响。
