Water sports, ghost stories by a campfire, arts and crafts, blood sugar checks before meals….
Blood sugar checks before meals?
For children with chronic illnesses—diabetes, kidney disease, arthritis—summer camp is often not possible because of their unique needs. For these children and their families, the dream of a carefree childhood is elusive. So often, these children see their siblings and classmates pack and go off to summer fun while they stay at home and chant the familiar childhood refrain, “I’m bored.”
If there is one thing almost all children hate, it is being different. Having a chronic illness makes them very different.
Helping everyone feel normal
At a camp for children with diabetes or kidney disease (or other chronic condition), they are not different. Going to the pool with a tube in your belly or scars on your arms is the norm. Children like to one up each other, so the child who can take the most pills with the least (or even no) water has special status.
Diabetic children can compare insulin sliding scales and complain about carbohydrate counting. Often, counselors also have the same diagnosis and at many camps, they come as alumni.
Group intervention is not a new concept. A variety of group interventions have been used and usually the goal is to increase knowledge, enhance adaptation, improve compliance, and decrease symptoms and side effects. While support groups often focus on one of these goals, summer camps can address all.
The study of group interventions for children with medical illnesses is relatively new. The first studies appeared in the early 1950s and there was considerable interest in exploring the value and implementation of group interventions. The 1980s saw growth in research using groups to improve outcomes.
During childhood, children and adolescents learn social skills, adaptive behaviors, and develop their personalities. Group treatment is thought to be helpful in increasing self-esteem, facilitating social adjustments, and learning problem solving by interacting with peers.1
Often children with a chronic illness have a higher incidence of depression than their peers without illness. It is thought that the camp experience can decrease the depression while increasing the child’s self-confidence at disease management.1
While there is not a significant body of literature studying summer camp and children with chronic illnesses, a 1992 study’s finding holds true today. Children who had either received a kidney transplant or who were on peritoneal dialysis attended a summer camp for one week. The camp was staffed by former campers or volunteers from a pediatric nephrology practice. Indicators for depression, self-efficacy and self-esteem were measured at the beginning and end of camp and one month later. Campers showed improvement in these areas immediately after camp and maintained that improvement at the month follow-up. There was no further follow up to see if the gains were maintained.2
A meta-analysis of 31 studies examining group treatments in the pediatric population included the benefits of summer camp for children with chronic conditions. The authors reported small, but statistically significant changes in the campers’ self-perceptions.
This in turn could translate into improved self-care. Interestingly, improvements in self-perceptions were found to be unrelated to the inclusion of educational components into the camp program.3
An additional benefit of summer camp is a break for the parents. Often both the parents and the children need a respite and camp allows the parents to relax with the confidence their child is receiving necessary supervision and the children can feel free of parents’ watchful eyes. 2
Specialty camps vs. mainstreaming
While there is a strong case to be made for disease-specific summer camps, there is also a strong case for mainstreaming children with specific needs into the general camping experience. Some believe the special camps further isolate children who don’t want to be singled out as different. Mainstream camps are closer to real life where the child interacts at school and in daily activities. It also gives the children without illnesses a chance to get to know and understand children who have them.
Mainstreaming requires adaptations by the camp and the facilities and staff to provide needed care. Often, the children receive hemodialysis during quiet time or before breakfast. Patients on peritoneal dialysis may do their exchanges after meals or before bedtime.2
What camp is appropriate and if camp is appropriate is a very individual decision and depends on the family and the child. While there is not an abundance of camps available and the cost can be out of reach of some families, there are some resources. One is the late actor Paul Newman’s Seriously Fun Network. Newman opened his first camp, The Hole in the Wall Camp, in Connecticut in 1988 for children with chronic illnesses so “they could raise a little hell.” Today, these camps are found in many areas worldwide (including Camp Boggy Creek in Orlando, Fla). They cater to a number of conditions and there is no fee for attending.
Camp stories you don’t always write home about
“The kids at Kappa Kidney Camp in Ohio can forget they have to do dialysis exchanges or go to hemodialysis. They talk about music, getting a driver’s license, all the normal things kids their age think and talk about. They don’t define themselves as having kidney disease.”
––Amy Hazel, APRN, Canton, OH
“It is embarrassing when the kids know more than you. When I went to camp, I always had Google on call because most of the time, standard sources were not as up to date. One time, a curly haired, dirty faced, gap toothed 8-year-old asked me if her tachycardia after hiking was normal after Tetralogy of Fallot repair without a ventricular septal defect patch. She obviously understood her condition better than I did. I diverted her attention by sending her to water sports and frantically researched the question. When she returned, I sounded like the expert when I told her it was ok as long as the rhythm was regular with no skipped beats.
“We also learned to make adjustments to insulin dosing when the children stopped to join in a sing along on their way to meals. After a couple of whoosy, hypoglycemic kids had to be carried into the camp cafeteria, we learned to give the insulin after the meal.”
––Kim Zuber, PA-c, Washington, DC
“I had experiences both in the United States (Sierras) and in Chile at camps for diabetic children. The gulf between the two camps was vast. In the Sierras, there were blood sugar checks and insulin administration times, but the rest of the day was spent in normal camp activities including rafting and hiking. Many of the counselors were also diabetics and were previous campers. In contrast, the campers in Chile had the same camaraderie but the facilities were not as up to date. I saw more complications, including seizures and ketoacidosis.”
Alexis Chettiar, ACNP-BC, Oakland, CA
“Camp Boggy Creek in Orlando, a Paul Newman camp, is attended by children with and without chronic illnesses. Diets are modified and some activities adjusted but on the whole, the kids just do camp.”
–– Amma Sewaah-Bonsu, DNP, NP-c, FNKF, Orlando
“A former camper reflected on his experience. Diagnosed with type 1 diabetes, his mother had managed his disease. At age 7, he went to camp and for the first time, took responsibility for his own disease. ‘The biggest lesson I learned at Camp Happy Trails was personal independence,’ he wrote. In addition to learning to manage the disease, ‘I learned I was ultimately responsible for the quality of my life. ’”
–Tina LaRoche, Executive Director of Camp Holiday Trails (CHT), Charlottesville, VA
Many thanks to all the contributors to this article. ––J.D., K.Z.
1. Plante WA, Lobato D, Engel R. Review of group interventions for pediatric chronic conditions. Journal of Pediatric Psychology. 2001, 26; 435-453.
2. Greenleaf K, Klee K, Watkins S. Summer camps for children and adolescents with kidney disease. ANNA Journal. 1997; 57-61.
3. Odar C, Canter KS, Roberts MC. Relationship between camp attendance and self-perceptions in children with chronic health conditions: A metal-analysis. Journal of Pediatric Psychology. 2013, 38; 398-411.