Researchers who study diabetes camps have increasingly turned to the psychosocial benefits for children who gain opportunities to be around others like themselves.
Three years after the discovery of insulin, the first camp for children with diabetes opened in 1925, with the same goals that exist today: to give children with type 1 diabetes (T1D) a summer camp experience in a medically safe environment, where they can take important steps toward self-care and form bonds with other children like themselves.1
The Diabetes Education and Camping Association (DECA) reports that 20,000 children take part in camps in North America each summer2; while most have T1D, a growing number have type 2 diabetes (T2D), and DECA Executive Director Terry Ackley told Evidence-Based Diabetes Management™ (EBDM™) in an interview, “There are conversations about how to best serve these children and their families.”
From the start, camp served as a place where children could learn to manage their diabetes, but for decades, research on the effectiveness of camp was sporadic, ranging from surveys, to reports, to more formal studies. The oldest abstracts listed on PubMed date to the 1950s, and research picked up in the 1980s and early 1990s. In 2015, the American Diabetes Association (ADA) reported results from a 3-year study that found a 10% increase in campers confident to manage their diabetes, with the largest increase (19%) among those newly diagnosed. The ADA study also found:
• A 7% decrease in diabetes-related anger and a 6% decrease in diabetes-related sadness
• An 11% increase of overall knowledge of proper diabetes management
• A 9% increase in the number of children who knew how to figure the correct insulin dose.3
Jill A. Weissberg-Benchell, PhD, CDE, professor of psychiatry and behavioral sciences at Northwestern University, and her co-authors offered a review of recent studies in a 2016 paper, Camp for Youth With Type 1 Diabetes.4 While the paper cited several studies that found increased diabetes knowledge in the months right after camp, the authors saw a great need for more research on the psychosocial aspects of camp, especially the long-term benefits.
“We know that the social support, the sense of not being alone, the shared experiences are very powerful,” Weissberg-Benchell said in an interview with EBDM™. When a child with T1D finally has sense that there are others that “get you,” it makes a difference, she said.
The 2016 paper called for longitudinal studies that compare quality of life, self-care, and family functioning among one-time and repeat campers.4 Separately, Weissberg-Benchell led a study published in early 2017 that surveyed parents and campers to assess how camp attendance affected diabetes-specific emotional distress, diabetes-specific quality of life, and self-care behavior.5 While the youth reported higher levels of self-care than their parents did, both parents and children agreed on a major benefit: camp is a place “where youth feel they are with others who really understand what it is like to live with diabetes.”
This is not to be underestimated, said DECA’s Ackley, who said Weissberg-Benchell’s work is needed and welcomed. One of the greatest benefits of camp for children with diabetes, Ackley said, are the friendships that develop. Thanks to social media, children have an easier time staying in touch. “They don’t feel isolated,” he said. “The lifelong friendships that develop—really, it changes lives.”
“One of the primary benefits is that children become capable of being more independent in their diabetes care,” There are many “firsts” at diabetes camp—the first time a child injects himself with insulin, the first time changing the site of an insulin pump, the first time eating a new food. “There’s formal and informal learning that takes place,” he said.
Camps Contribute to Science
The surveys of parents and youth campers found that both saw exposure to new technology as a benefit of camp.6 The 2016 paper had highlighted the enormous contribution that camps have made to clinical trials—they have served as the perfect laboratory for studying many of the modern technologies on the market today.5 Camp studies have contributed to the development of continuous glucose monitoring (CGM) systems, to technology that allows remote monitoring of CGM, and to the “artificial pancreas” so eagerly awaited by those with T1D.6-9
Weissberg-Benchell also led a study that examined the psychosocial impact of this emerging technology on the children taking part in the clinical trial.10 She and her co-authors found that children using the automated insulin delivery device in the trial reported “significant reductions” in hypoglycemic fear and regimen burden, but “expressed annoyance about carrying around the necessary equipment.”
Few Minority Families Respond
While Ackley reports that children from low-income families are well-represented at camp, thanks to fund-raising and scholarships, Weissberg-Benchell said getting low-income minority families to respond to surveys for research purposes has been difficult. This was acknowledged as a limitation in her recent study, and she said despite redoubling efforts the following summer, the researchers still had very few responses from minority parents. There are many reasons for this, from lack of internet access to the fact that the families do not know the researchers personally. “It’s a moral and ethical issue,” Weissberg-Benchell said, and one that researchers will keep working to address. “These are families whose voices are not as well heard,” she said.
1. American Diabetes Association. Diabetes management at camps for children with diabetes. Diabetes Care. 2012;35(suppl 1):S72-S75. doi: 10.2337/dc12-s072.
2. Why camp. Diabetes Education and Camping Association website. www.diabetescamps.org/about-camp/why-camp/. Accessed May 27, 2017.
3. Camps make a difference! American Diabetes Association website. www.diabetes.org/in-my-community/diabetes-camp/camps-make-difference.html. Published June 29, 2015. Accessed March 26, 2017.
4. Fegan-Bohm K, Weissberg-Benchell J, DeSalvo D, Gunn S, Hilliard M. Camp for youth with type 1 diabetes. Curr Diab Rep. 2016;(8):68. doi: 10.1007/s11892-016-0759-x.
5. Weissberg-Benchell J, Rychlik K. Diabetes camp matters: assessing families’ views of their diabetes camp experience [published online February 3, 2017]. Pedatr Diabetes. doi: 10.1111/pedi.12499.
6. Gandrud LM, Pagruntalan HU, Van Wyhe MM, et al. Use of the Cygnus GlucoWatch biographer at a diabetes camp. Pediatrics. 2004;113(1 Pt 1):108-111.
7. DeSalvo DJ, Keith-Hynes P, Peyser T, et al. Remote glucose monitoring in camp setting reduces the risk of prolonged nocturnal hypoglycemia. Diabetes Technol Ther. 2014;16(1):1-7. doi: 10.1089/dia.2013.0139.
8. Russell SJ, El-Khatib FH, Sinha M, et al. Outpatient glycemic control with a bionic pancreas in type 1 diabetes. N Engl J Med. 2014;371(4):313-325. doi: 10.1056/NEJMoa1314474.
9. Ly TT, Roy A, Grosman B, et al. Day and night closed-loop control using the integrated Medtronic hybrid closed-loop system in type 1 diabetes at diabetes camp. Diabetes Care. 2015;38(7):1205-1211. doi: 10.2337/dc14-3073.
10. Weissberg-Benchell J, Hessler D, Polonsky WH, Fisher L. Psychosocial impact of the bionic pancreas during summer camp. J Diabetes Sci Tech. 2016;10(4):840-844. doi: 10.1177/1932296816640289