Camping for youth with chronic illnesses.

Like all kids, youth with chronic illnesses need opportunities for challenge an growth. But unlike most youngsters, those with chronic diseases have many fewer options available to them.

Fortunately, in recent years awareness has grown concerning camp's ability to benefit these youth. Concomitantly, the number of specialized camp programs serving this population is growing.

One such specialized program demonstrates the difficulties involved when servin children with special medical needs. Called Camp Fortnight, the program offered an unusual cross-cultural camping experience for children from the United Kingdom with cystic fibrosis (CF). Even though a recent rulingby the Cystic Fibrosis Foundation recommended that camps stop serving this population, carefu planning allowed the camp to go forward last fall. The positive outcomes experienced by the children reinforce the need to offer camp opportunities to all children with chronic illnesses.

Origins of Camp Fortnight

In October of 1993, the Cystic Fibrosis Holiday Fund for Children brought 25 campers and a full medical staff from the U.K. to the United States to experience the excitement of camp. Their chosen site was Camp John Marc, a nonprofit camp near Dallas, Texas, designed to serve Children with chronic illness. The CF Holiday Fund dubbed this one-time experience Camp Fortnight.

The CF Holiday Fund is a non-profit organization that provides vacation opportunities (known as "holidays" in the U.K.) at home and abroad for children with CF. A Holiday Fund goal is to provide opportunities for children with CF t experience a once-in-a-lifetime holiday. The goal is based on the idea that it is important for children with CF to be able to socialize outside a hospital setting with other children with CF. These children come from all over the United Kingdom.

The idea to bring campers to a camp in Texas began some 14 months earlier. According to Linda Hickman, the secretary of the CF Holiday Fund, Camp John Mar was First brought to their attention by a businessman from Wales who was visiting Dallas. Lawrence Levy, Chairman of the CF Holiday Fund, traveled to Texas to visit the ACA-accredited camp. Much planning and corresponding was don between Dr. Bob Kramer, a noted Cystic Fibrosis physician in Dallas, and Holida Fund medical and organizing committees. During the summer of 1992, CF Holiday Fund staff members visited and assessed the camp facility.

Children are referred to the CF Holiday Fund by their attending pediatricians. The applicants go through a careful screening process; each child is considered individually in regard to his or her life circumstances, family issues, and potential benefits the holiday may hold for him or her. Children are also medically screened and given a "fit to fly" examination by a physician.

Camp Fortnight brought together 17 boys and 8 girls aged 11 to 15 years old. Th children came from England, Ireland, Wales, and Scotland; approximately 80 percent were from socially deprived backgrounds. Many of the children attending this program had experienced difficult times dealing with their disease and related issues, had had few outside social experiences, or had recently lost a sibling to CF.

Serving Youth With CF

Cystic Fibrosis is a multi-system disease which occurs in one out of every 2,00 live birth. It effects the mucus-secreting glands of the lungs, pancreas and other exocrine glands. CF shuts off the work of the pancreas, making it difficult for the body to absorb food unless enzymes are taken before eating.

In addition to receiving enzymes with every meal, campers require repeated inhalation treatments from nebulizers to deliver a mist of medicine into the lungs. They also must have physical therapy treatments to open breathing passages and reduce phlegm. The physical therapy treatments consist of a series of poundings on the chest and back to loosen the phlegm (Dallas Cystic Fibrosis Care Center, 1983). Although treatments are required several times a day, careful planning allows time for many exciting activities while at camp.

For children with chronic diseases, activities, exercise, and sports play an important role both physically and socially. For children with CF, exercise and activity are especially important because they can help clear airways in the lungs. During activities and exercise, children with CF frequently begin to cough; this coughing helps clear their airways (Dallas Cystic Fibrosis Care Center, 1983; Goldberg, 1990).

In the United States, camps for children with Cystic Fibrosis have virtually disappeared, due to a recommendation by the Cystic Fibrosis Foundation concerning the transferability of a pathogen called pseudomonas cepacia, or p. cepacia. Though concern for this infectious pathogen is shared in the U.K., a centralized committee has been designed to test, research, and review p. cepaci issues. Due to the small geographic size of the U.K., this committee is able to collect and collate the results of testing from all CF Centers quickly and thoroughly (L. Hickman, personal communication, March, 1994).

Children testing positive for p. cepacia at any time prior to Holiday Fund programs are unable to attend. CF Holiday Fund campers were allowed to attend Camp John Marc if they passed screenings for p. cepacia one month and one week prior to the program.

The Camp Fortnight Experience

On October 4, Camp John Marc staff and Holiday Fund coordinators eagerly awaite the arrival of the campers at the Dallas Forth Worth Airport. The group's arrival had been postponed a day because the first plane they took had suffered mechanical difficulties. Upon arrival, the children appeared excited, curious and a little tired, while the adults appeared exhausted after the long trip. Th drive to camp provided an opportunity for cultural exchange. The van echoed wit music and campers' laughter as they viewed an unfamiliar country and environment.

All programming for Camp Fortnight was carried out by Camp John Marc staff. Cam programs included wilderness experiences, a challenge course, fishing, horse back riding, creative arts, cooking, arts and crafts, theme nights, hiking, and outdoor camping. Field trips included excursions to Fossil Rim, the Fort Worth Stock Yards, the Cleburne Rodeo, Six Flags Over Texas, and the Texas State Fair

One of the first outings included an adventure to a nature and wildlife preserv and an American style picnic. Staffers learned that the British have much different tastes in sandwiches than Americans. The campers seemed to really enjoy the petting zoo, although they were very tentative at first. Many had never seen farm animals before, let alone pet them. The campers were especially curious about a pot-belly pig curled up in a pen, and they requested pictures b taken to share this event with others back home.

Camp days were filled with many activities and opportunities to share, create, explore, and learn. An exchange of culture was constant at camp: learning about different foods; comparing accents from all the different countries represented campers trying out their best Texas accent and staff trying to emulate an English lilt. Meals were always interesting, as the children took enzymes to absorb their food. At the campfires, stories and songs from the various culture were shared and interpreted.

Near the end of Camp Fortnight, all the campers were given the opportunity to camp out under the stars. Many of the campers and staff from the U.K. had never been camping outside, due the wet, cold climate. Campers were enthusiastic abou this new endeavor. The evening culminated with a roaring fire, "real life" ghos stories about old mansions in England, and an American Indian story.

Meet the Campers

David, a quiet, intelligent, young man of 13, had a very difficult time during the first week of camp. He did not like the food and refused to eat anything fo several days because it was not what he was used to eating. During the week there was quite a concern about his health situation. He rebelled against his physical therapy, saying "Why should I do it, it doesn't help anyway." Begrudgingly, he did it anyway.

David generally stayed close to the adults and had little interaction with his peers. A Texas rodeo brought this young man out of his shell. He was fascinated with the horses and animals, since he drives ponies in England. One of the adults loaned David a 35mm camera, and he just bloomed. He began taking picture of rodeo animals and cowboys and sharing ideas with his peers. By the end of th two weeks, David did his physical therapy with less complaining, spent more tim with his peers, and said he felt better for the first time.

Michael was an energetic young man from Northern Ireland. For him the trip was different, for he was traveling with people he had traditionally been taught no to trust. Michael carried much anger with him for the first part of the trip. A outgoing person who generally got along well with peers, he struggled internally. He had traveled from the fighting and blood shed of Northern Irelan to be with new people in a far away country. Michael was always a part of the action at camp, and for the first time he found friendship and camaraderie with other children who had CF. Since his return home, his teachers have noticed he is less aggressive and interacts more appropriately with peers.

Emma, a bright, creative young woman of 14, was one of the eight female campers at Camp Fortnight. During camp Emma chose many creative activities for herself. One of the young men in the group experienced a birthday and she helped a group of campers create a cake in the shape of a golf cart. Emma seemed to enjoy the horses the most and spent all the time she could riding. She was a role model for the younger female campers. While at the pier she confidently put the bait on her hook and helped others as well. Emma was confident and in control of her disability. She was generally the first to finish her physical therapy so she could move on to more exciting activities. Her good example was a great help to other campers.

Richard was a thin young man of 13. For youth with CF it is important to eat foods higher in fat and calories to maintain energy and possibly gain weight. During camp Richard flourished by eating sweets, french fries, potato chips and fully dressed baked potatoes. He gained weight, was full of energy, and made many new friends. According to Linda Hickman, he also took charge of his treatment for his CF. His mother was so impressed with his progress during the holiday, she reported, that he went away a child and returned a responsible young man.

Adam was an energetic young man of 14 who faced many trials before arriving at camp. Adam had lost his left eye to complications from his CF and suffered a broken spine due to his medications making it brittle. Adam's self-esteem truly seemed to grow over the two weeks he was at camp. During camp he was a role model and leader for his peers. In the pool, he played games with the younger boys and helped them swim, and during camp outings he led songs and shared stories. After the camp experience, others shared that Adam had gained skills t help him deal with his life and illness.

Camp Comes To a Close

The final night of Camp Fortnight came all too quickly. The group who stepped off the plane two weeks ago were now friends and part of the Camp John Marc family. For the close of camp a Texas style hoe-down and awards ceremony was staged. Campers and staff demonstrated country and western line dances taught earlier in the week. In an awards ceremony, every camper was told what they did best and how they made Camp Fortnight a memorable experience. The night ended with lots of hugs and invitations to visit each other's country.

Camp Fortnight alumni have remained in contact through phoning and writing. Thi year, many of the campers and staff met together in England for a small reunion Campers were still talking and reminiscing about their holiday to Camp John Mar and the United States. Campers reported that the memories of the holiday kept them going during treatments and daily life challenges.

Through the coordinated efforts of the CF Holiday Fund and Camp John Marc, Camp Fortnight offered a unique combination of camping and international exchange. Campers with CF were able to experience adventures, friendship, fun, and excitement and add a wonderful collection of memories that will enrich them for a lifetime. In short, camp provided them an experience every child should have.

References

Beall, R.J. & FitzSimmons, S.C. (1993, January). CF summer camps and pseudomona cepacia cohorting (memo to camps serving CF populations). New York: Cystic Fibrosis Foundation.

Dallas Cystic Fibrosis Care Center. (1983). Cystic fibrosis family handbook. Dallas: Children's Medical Center.

Goldberg, B. (1990). Children, sports, and chronic disease. The Physician and Sports Medicine, 18 (10), 45-56.

Isles, A., MacLuscky, I., Corey, M., Gold, R., Prober, C., Fleming, P. & Levison, H. (1984). Pseudomonas cepacia infection in cystic fibrosis: An emerging problem. Journal of pediatrics, 104, 206-210.

Ruling Closes Camps for Children With Cystic Fibrosis

In January 1993 the Cystic Fibrosis Foundation made the following recommendation: all Cystic Fibrosis Foundation Centers accredited by the Cystic Fibrosis Foundation should discontinue support of cystic fibrosis summer camps.

Why should these programs stop? Because of the fear of pseudomonas cepacia. P. cepacia is recognized as an important pathogen in patients with cystic fibrosis because it seems to have potential to spread from one cystic fibrosis patient t another. A potentially lethal pathogen, it is present in 2 percent of all CF patients.

Researchers are still learning about p. cepacia. The modes of transmission of the pathogen are not clearly established. The organism tends to be resistant to antibiotics and disinfectants. Pulmonary infection with p. cepacia is very difficult to prevent and to treat.

With these factors in mind, the Cystic Fibrosis Foundation chose to remove its support for summer camps for children with cystic fibrosis. Evidence supporting this decision can be found in 14 different research studies published over the last 10 years. Such studies reported the following evidence:

* Person to person acquisition of p. cepacia has been established among CF patients.

* P. cepacia infection rates decline after patients infected with the pathoge are separated from those not infected.

* Prescreening is not foolproof in determining the presence of p. cepacia, an patients intermittently have false negative cultures.

* A CF patient's culture that is negative for p. cepacia one month prior to a camp session is not sufficient insurance against possible transmission during camp.

* P. cepacia is a dangerous pathogen that causes further disease and unexpected early death.

Furthermore, there is a notable lack of effective therapy.

* There are genuine concerns about performing lung transplantations in patients who are infected with p. cepacia.

Camps across the country felt the impact of losing their cystic fibrosis programs. For years the quality of life for children with cystic fibrosis seeme to be enhanced by the joys of organized camping. Perhaps medical advancements i upcoming years will bring effective treatment for p. cepacia, or perhaps a more effective screening process. Until then, children with cystic fibrosis will likely be denied the benefits of a camp experience.

Joanna L. Burns is a master's degree candidate in recreation and leisure studie with an emphasis in therapeutic recreation at the University of North Texas. Sh completed her internship at Camp John Marc during the Fall of 1993.

M. Jean Keller is associate dean in the College of Education and professor of recreation and leisure studies at the University of North Texas in Denton, Texas.