Research Story Tip: Study Looks at Barriers Keeping Children from Attending Diabetes Camps, Suggests Remedies
According to the Diabetes Education and Camping Association, over 20,000 North American children with type 1 diabetes attend diabetes camps and related programs each year. These activities, says the organization, enable children to improve their management of the disease, provide motivation and support by being with others who share the condition, and foster acceptance and understanding while having fun.
Although the benefits of diabetes camp programs are well established, minority youth are underrepresented in camp attendance. In a recent study — believed to be the first of its kind — Johns Hopkins Medicine researchers tried to define why this occurs, identify barriers to making it happen and find potential disparities in those barriers.
In the study, 39 children, ages 5 to 15 with type 1 diabetes, and their primary caregiver were surveyed. The majority of the children were between ages 10 and 15 (59%), male (54%) and had an average time with diabetes of 2.9 years. Ethnically and racially, the participants were 67% white, 28% Black, 2.5% Hispanic or Latino, and 2.5% other groups. Only 18% of the children had previously attended a diabetes camp, although most (79%) had heard about them from their diabetes medical team. Less than half (46%) of the children and their caregivers were aware that financial assistance was available to help pay for attendance.
The most frequently reported barriers to attending diabetes camp — for all racial/ethnic groups, socioeconomic levels, and for children who had or had not previously attended camp — were “There are no camps close to me” (59%), “Camp is too much money” (46%) and “I don’t want my child to attend sleep-away camp” (44%). Families of youths ages 10 to 15 were more likely to report “My child doesn’t want to attend sleep-away camp” (40%) than “I don’t want my child to attend sleep-away camp” (33%).
The average number of barriers reported per family was 2.3, with no significant difference in majority compared to minority children.
Most families were able to identify benefits of diabetes camps, including meeting other friends with diabetes (100%), improved independence in diabetes control (97%), improved diabetes control (94%) and learning about diabetes (94%).
Participants stated that diabetes clinics, online and social media groups, and the Juvenile Diabetes Research Foundation were the sources they most often sought for support and information about diabetes. However, minority families reported engaging with fewer sources and networks compared with white families.
“Our findings indicate that if barriers are mitigated, parents and caregivers would be more likely to send their children to diabetes camps,” says Risa Wolf, M.D., assistant professor of pediatrics at the Johns Hopkins University School of Medicine and senior author of the study.
The researchers suggest a number of strategies to improve access to diabetes camps, especially for minority and underserved populations. These include:
· Operating more day camps in urban settings to provide easier access for young children — and perhaps, serve as a springboard to overnight camps.
· Increasing diversity of camp staff to appeal to more minority youth.
· Inclusion of developmentally appropriate programs — such as counselor-in-training opportunities — to engage more adolescents.
· Increasing awareness of financial assistance and scholarships for camps, thereby encouraging families to seek more support.
· Increasing availability of camp information on social support networks and in diabetes clinics since most study participants cited them as primary knowledge resources.
“Although the sample size was small, our study findings clearly suggest that further research is needed — with more Black and Hispanic/Latino families participating — to gain greater insight into the barriers to attending diabetes camps, and then develop ways to overcome them,” says study lead author Gina Ferrari, M.S.N., M.P.H., F.N.P.-C, a recent graduate of the nurse practitioner program at the Johns Hopkins University School of Nursing.