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Background:
Children with sickle cell disease (SCD) face unique problems that attendance at a camp with their peers is well suited to address. However, because the staff members at ordinary summer camps are not accustomed to accommodating children with chronic diseases, the potential for significant health consequences exists.
Methods:
We search...
Citations
... In the United States, SCD is the most prevalent genetic disease-one in 12 African Americans has the sickle cell trait (3)-affecting approximately 100,000 Americans with an estimated 1000 children born with the disease each year (32). Longterm irreversible complications of SCD, such as vaso-occlusive crisis and hemolysis, are the most common causes of morbidity and death (3). ...
Background:
Sickle cell disease is the most common genetic hemoglobinopathy globally and systemically affects body functioning, decreasing exercise capacity.
Objective:
To assess exercise capacity through the 6-minute walk test (6MWT) and biomarkers in children and adolescents with sickle cell disease.
Materials and methods:
Cross-sectional study involving 20 children and adolescents from Brazil. Demographic and socioeconomic data were obtained. Baseline measurements included biomarkers (red blood cells, hemoglobin, hematocrit, white blood cells, platelets, reticulocytes, lactate dehydrogenase, creatine phosphokinase, C-reactive protein, interleukin 6, and fetal hemoglobin). The following data were obtained before, during, and after the 6MWT: heart rate, blood pressure, and peripheral oxygen saturation.
Results:
Eighteen children and adolescents ages 5-14 years old were analyzed, 61.1% boys, 100% black or brown, and 61.1% in primary education, with low household income. The average distance walked in 6MWT was 463.8 (137.7) m, significantly less than the predicted value (P < .001). The distance of 6MWT was associated positively with age (P = .042) and inversely with reticulocyte count (P = .42) and interleukin 6 (P = .00). Age modified the effect of interleukin 6 in younger children (P = .038).
Conclusion:
Our findings suggest increased baseline levels of biomarkers of hemolysis and inflammation impact on 6MWT performance.
... 18 Camp also offers an opportunity for care coordination, dissemination of best practices for the disease, education on self-care, and help with the transition from adolescent to adult care. 19 However, the opportunity for children with SCD to attend summer camp is limited. In the United States, 67% of children with SCD live in poverty or low-income families, 20 and the same is believed to be true for children with SCD living in Canada; however, no data are available that characterize the socioeconomic status of patients with SCD in Canada. ...
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.
... In addition, careful consideration of SCDrelated peer support may be important as there might be positive and negative aspects of increasing contact with other individuals with the same chronic condition. For example, youth might find support or potentially new areas of dissatisfaction via interactions at SCD camps, support groups and networks, and mentorship programs (Berg, King, & Edwards, 2018;Narcisse, Walton, & Hsu, 2018). Given the potential impact of peer interactions on identity development and self-esteem during adolescence, fostering supportive peer relationships that encourage healthy identity development may be particularly important for this population. ...
Introductions:
Sickle cell disease (SCD) is the most commonly inherited blood disorder in the United States, and it predominately affects the Black community. SCD is characterized by a number of symptoms, including unpredictable pain, which can lead to hospitalizations. Data indicate that people with SCD experience racism and ample data indicate that racism predicts depressive symptoms and impaired health-related quality of life (HRQOL). In contrast, research suggests that social support might buffer the impact of racism on depression. The aim of this study was to explore associations among perceived racism, depressive symptoms, and HRQOL in adolescents with SCD. Consistent with the literature, it was predicted that perceived racism would predict HRQOL through depression, and social support would moderate the negative impact of racism on depression.
Methods:
In a cross-sectional design, 75 inpatient adolescents with SCD completed measures of perceived racism, depressive symptoms, HRQOL, and social support.
Results:
This results indicated a moderated mediation model with greater perceived racism predicting more depressive symptoms, which in turn related to poorer HRQOL; greater access to social support from individuals with SCD strengthened the perceived racism-depressive symptom association.
Conclusions:
Findings suggest a model for how racism, depressive symptoms, HRQOL, and social support might interact in hospitalized adolescents with SCD. Longitudinal or experimental designs are needed to substantiate directionality among these variables. Results highlight several areas for future research and clinical avenues to improve the welfare of youth with SCD.
Vapocoolant sprays are convenient forms of cold temperature analgesia. These sprays may not be suitable for all patients with particular concern for patients with sickle cell disease. To prevent any further cases from occurring, we propose adding a more specific cautionary statement to the manufacturer guidelines. We also hope that medical personnel can help patients with sickle cell avoid topical and environmental cold temperature triggers for sickle vaso-occlusive pain and reduce the suffering in this rare disease.
