TY - JOUR
T1 - Therapeutic recreation camps for youth with childhood-onset systemic lupus erythematosus
T2 - perceived psychosocial benefits
AU - Saez, Cristina
AU - Nassi, Lorien
AU - Wright, Tracey
AU - Makris, Una E.
AU - Kramer, Justin
AU - Bermas, Bonnie L.
AU - Solow, E. Blair
AU - Bitencourt, Nicole
N1 - Funding Information:
We would like to acknowledge all participants who shared their experiences, perspectives, and expertise with our team. We are appreciative of the Qualitative Research Committee (QRC) infrastructure made possible through UT Southwestern’s Department of Population and Data Sciences.
Funding Information:
Research reported in this publication was supported by a Children’s Health’s through the Children’s Clinical Research Advisory Committee fellow grant. The content is solely the responsibility of the authors and does not necessarily represent the official views of Children’s Health. The funder/sponsor did not participate in the work.
Publisher Copyright:
© 2022, The Author(s).
PY - 2022/12
Y1 - 2022/12
N2 - 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.
AB - 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.
KW - Lupus camps
KW - Psychosocial health
KW - Transition to adult care
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U2 - 10.1186/s12969-022-00702-w
DO - 10.1186/s12969-022-00702-w
M3 - Article
C2 - 35672791
AN - SCOPUS:85131490507
SN - 1546-0096
VL - 20
JO - Pediatric Rheumatology
JF - Pediatric Rheumatology
IS - 1
M1 - 39
ER -