Abstract
Background: Sickle cell disease (SCD) has a significant psychosocial impact on affected children. Summer camp has been shown to improve psychological and physical states for children with diabetes and cancer. However, opportunities to attend camp for children with SCD are limited, as many are from low-income families, and many camps are not equipped to care for children with medical complexities. To our knowledge, no literature evaluates how camp can positively affect emotional functioning, social functioning, self-esteem, and physical activity levels in children with SCD.Methods: Children with SCD attending a residential summer camp during 2019 were identified. Participants completed a modified version of the Pediatric Camp Outcome Measure, a validated 29-item questionnaire that evaluates self-esteem, emotional function, social function, and physical activity. Four additional questions related to SCD were included.Results: Nine campers enrolled in the study. Questionnaire results showed a total score of 113.7 (maximum score135, range 84-129), with a self-esteem subscale score of 22.1 (maximum score 25, range 20-25), an emotional subscale score of 32.1 (maximum score 40, range 25-39), a social subscale score of 38.9 (maximum score 45, range 24-45), and a physical activity subscale score of 20.6 (maximum score 25, range 19-25). All campers indicated that they would return to camp.Conclusion: Attending summer camp has a beneficial impact on emotional function, social function, self-esteem, and physical activity. Mean questionnaire scores from children with cardiac disease and cancer are similar to those of children with SCD. Increased funding should be awarded to sickle cell camps to allow for more children to have this beneficial experience.
Highlights
Sickle cell disease (SCD) is one of the most common, severe, monogenic disorders affecting children in Canada.[1]
The mean Pediatric Camp Outcome Measure (PCOM) score in our study was 113.7, which is similar to published PCOM scores from camps for children with congenital heart disease (107.7)[24] and cancer (117.9).[25]
The similar PCOM scores indicate that attending camp is as beneficial for children with SCD as it is for children with other chronic medical conditions
Summary
Sickle cell disease (SCD) is one of the most common, severe, monogenic disorders affecting children in Canada.[1]. Having a complex chronic illness has a significant psychological impact on children with SCD. No literature evaluates how camp can positively affect emotional functioning, social functioning, self-esteem, and physical activity levels in children with SCD. Participants completed a modified version of the Pediatric Camp Outcome Measure, a validated 29-item questionnaire that evaluates self-esteem, emotional function, social function, and physical activity. Questionnaire results showed a total score of 113.7 (maximum score[135], range 84129), with a self-esteem subscale score of 22.1 (maximum score 25, range 20-25), an emotional subscale score of 32.1 (maximum score 40, range 25-39), a social subscale score of 38.9 (maximum score 45, range 24-45), and a physical activity subscale score of 20.6 (maximum score 25, range 19-25). Conclusion: Attending summer camp has a beneficial impact on emotional function, social function, self-esteem, and physical activity. Increased funding should be awarded to sickle cell camps to allow for more children to have this beneficial experience
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