By Maya Doyle, CSW The Ruth Gottscho Dialysis & Children’s Kidney Program at Frost Valley YMCA1 in Claryville, N.Y., was the first program to allow children with kidney disease to have a summer camp experience. The program, now in its 30th year, was founded to provide a program “for children whose kidney disease had heretofore kept them tethered to clinics and hospitals and apart from the beauty, friends, and fun that other kids found at summer camp.”2 Since that time, tremendous medical advances have occurred, and many children who once may have been dialysis campers are now coming to camp after successful kidney transplants. Camp programs for these children have proliferated – now around 30 programs exist in the United States alone. Summer camp programs for children with kidney disease may be “mainstream” or “disease specific.”3 The programs have many different structures. The program at Frost Valley focuses on mixing “kidney campers” with “healthy” campers. Other programs are more disease specific, joining groups of children who share similar health experiences, while other programs bring children, parents and siblings together. No matter the program you choose the camp experience is vital for a child with kidney disease, whether on dialysis, with a transplant, or coping with chronic kidney disease (CKD). Independence All parents worry about their children, and for parents whose child has CKD or end-stage renal disease (ESRD), that worry can be overwhelming. Dependence on a dialysis machine, a medication regimen, and close supervision by medical staff is contradictory to a child’s normal pattern of increasing independence as they grow and enter adolescence and young adulthood.4 Camp helps these kids get beyond the familiar – their home and their medical setting – while in a safe, medically supervised environment. Camp provides good practice for all those other “steps” outside of the familiar – high school, college, moving out of mom and dad’s house, meeting new people and building relationships. Self Confidence For healthy children, as well as kidney campers, the summer camp experience provides opportunities to try all sorts of sports and activities. Whether it is horseback riding, pottery, overnight hikes, talent shows, learning to swim, learning peritoneal dialysis for the first time or meeting new friends, camp lets kids find things to be proud of and stories to bring home that say “guess what I did this summer….” Kidney campers get to do what all the other kids do. Children are also encouraged to take more responsibility for self-care by remembering medication times, checking their own weight and temperature, or performing their own treatments with nurse supervision. Active participation in these tasks provides campers with a sense of control over their medical conditions, and helps them make the medical regimen part of their everyday life. Peer Relationships Children with kidney disease, especially those on dialysis, may find themselves socially isolated or struggling with social skills. They may spend more time around parents and healthcare providers than around other children, or be “overexposed” to a healthcare setting. Camp staff can help make socialization less scary, as children meet each other as cabin mates or through organized activities. Most children go home with an address book filled with the names of campers and counselors with whom they made a special connection. At many camps, the staff breaks down stereotypes and fears associated with illness and disability. Counselors bring entire cabins down to a dialysis unit to learn about what kidneys do and why some people need dialysis or transplants. Kidney campers are able to be “experts” about their medical condition to their fellow campers, if they choose; making what may seem like their difference into their strength. Camp alumni talk about the eye-opening experience they had when they met fellow campers with kidney disease. Campers new to or struggling to cope with dialysis or chronic disease meet children who have successful kidney transplants, providing hope for the future. A Special Time for Parents Depending on the camp program, parents may get some much needed “time off” while their child is under medical supervision at camp (perhaps even scheduling a rare “parents only” vacation), or families may attend a program, such as Camp Sunshine5 with their child, which gets them out of their usual daily routine. Family camp programs are generally disease specific and allow parents and campers to meet others who share similar medical experiences, and to participate in activities that foster family involvement and coping. A Special Experience for Staff The program at Frost Valley is staffed by pediatric nephrology attending physicians, training fellows, and dialysis nurses. Although most staff members come from the Children’s Hospital at Montefiore in Bronx, N.Y., staff members in Albany and Stonybrook, NY; Philadelphia; New Jersey; and Connecticut have also traveled to the Catskills to participate. The camp provides a unique opportunity to see and connect with these pediatric patients outside of the medical setting and to observe their coping abilities and interactions with the rest of the world. It is also a poignant reminder that kidney disease has an effect on every aspect of a child’s life, and there is a lot more to being a kid with kidney disease than just taking medications or getting to dialysis on time. References: www.frostvalley.org/programs/summer_camp/dialysis_center.htm Galusha, Diane. Build Strong: The History of Camp Wawayanda/Frost Valley YMCA. Frost Valley Press, 2001. Klee, K; Greenleaf, K; Watkins, S. Summer Camps for Children and Adolescents with Kidney Disease. ANNA Journal, February 24(1): 57-61, 1997. Primack, William and Greifer, I. Summer Camp Hemodialysis for Children with Chronic Renal Failure. Pediatrics, December 60:46-50, 1977. www.campsunshine.org
Maya Doyle, CSW, is the pediatric renal social worker at the Children’s Hospital at Montefiore in Bronx, N.Y., and is the social work/admissions coordinator for the Ruth Gottscho Dialysis and Children’s Kidney Program at Frost Valley YMCA. To contact her, send an e-mail to mdoyle@montefiore.org. For more information, click here. This article originally appeared in the July 2005 issue of aakpRENALIFE, Vol. 21, No. 1.
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