Camp Workshop for Adolescent Amputees: An Interim Report
GAY GREGG, OTR/L, BEVERLY DIURBA, LPT,AND WILLIAM T. GREEN, JR., MD*Pittsburgh, Pennsylvania
In 1977 Mary Williams Clark, et al, reported their initial experience with a camp workshop for adolescent amputees1. Since then the number of campers has more than doubled, in response to the needs of adolescent amputees and their families. Our enthusiasm for this form of service to adolescent amputees from Pennsylvania, West Virginia and Ohio continues, as we plan for the tenth annual camp.
The original goal of the three-day Adolescent Amputee Camp was "to give adolescent amputees a good camping experience" and "to provide a relaxed, nonclinical setting in which adolescent amputees could discuss particular problems of being amputees and adolescents. . . "2. This continues to be our goal.
As the camp grows into its own adolescence, an added objective is to achieve administrative independence, by insuring its future continuity without reliance on a single individual or organization. The camp should have continuity of leadership, funding support and camper recruitment. To achieve this objective the camp organizers have sought voluntary support. Fortunately the western Pennsylvania community has been responsive.
Over the years the size of the amputee camp has gradually increased. In 1976, 13 campers and 15 counselors participated. In 1984, 29 campers interacted with 24 counselors. In each of the past two camps, 1983 and 1984, the composition was approximately 33 percent new campers and counselors and 67 percent returning campers and counselors.
Historically, more boys have attended camp than girls. In 1984, 17 boys and 12 girls attended; the average age was 14 years, with age ranging from 11 to 18 years of age. The optimum age for a new camper is that point when the individual changes from childhood latency to adolescence. The chronological point when the change occurs differs from one person to the next.
The current group includes individuals with amputations due to several causes: 14 congenital, 7 traumatic, and 8 secondary to tumor resection. The distribution of amputation levels and causes has varied over the years; in 1984, eight campers had upper and 20 had lower-limb deficiencies, and one camper had an upper- and a lower-limb amputation. Five campers are bilateral amputees.
The counseling staff is composed of volunteers including physical and occupational therapists, social workers, nurses, prosthetists, former campers and interested business people. Some staff members are amputees and provide successful role models for the campers. The counselors are responsible for group facilitation, food preparation, activity organization and participation and attention to the special needs of the campers. The most important responsibility is making sure that no camper's needs are overlooked, whether the adolescent is shy, immature or overly aggressive. To avoid campers being lost in the group, a "buddy system" has been implemented. A counselor checks discretely with one camper periodically during the weekend to see if that individual is having a good time, yet not overdoing. If problems are identified, the counselor helps to correct the situation, perhaps spending more time with the camper, making efforts to involve the camper with other adolescents, asking for help from other counselors, or in case of physical problems, informing the camp nurse or prosthetist.
Strong bonds are developed between campers and counselors on the bus ride to camp. For this reason the staff members are asked to ride the bus and to particpate in the entire three days. This maintains the cohesiveness of the camp program and prevents campers from feeling that they are on display, with people wandering in and out during the weekend.
Activities planned during the weekend include discussion groups, sports, and social activities. On the first day, as soon as everyone can be gathered, a discussion group enables campers to be introduced to each other and to the staff. The opportunity to begin putting names and faces together helps facilitate subsequent discussions, where topics of dating, trust, body image, prosthetics, working together and asking for help are explored. Informal discussions continue throughout the weekend, prompted by the ideas brought out in the formal groups.
Sports are an intrinsic aspect of rehabilitation in building self-confidence and are a very important part of the camp program. Campers have the opportunity not only to tackle new sports and learn about sports adaptations from one another, but also to take the risk of trying an activity, such as swimming, in a supportive atmosphere. The camp gives the recent amputee a chance to resume some previous activities. Parents may be reluctant to allow disabled children to engage in potentially hazardous pursuits. While the camper benefits from participating in sports, counselors who are usually involved with the camper's medical needs receive an improved perspective of the camper's abilities and needs in a nonclinical setting Sports include horseback riding, softball, archery (Fig. 1 ), volleyball, basketball swimming and several lawn games.
Social activities during the weekend include hayrides, campfires and dances Dances are a stressful situation for any adolescent, as indicated by many campers' initial reluctance to participate. This is when the counselors and older campers are invaluable in helping young people enjoy their first dance. Once the dancing has started it is often difficult to get campers to stop. When asked if he would go to another dance, one camper stated, "Yes, now I think I can ask my girlfriend to the next school dance."
Campers and staff get to know each other well in a very short period of time. Staff members gain a renewed sensitivity to feelings of others. The campers learn that it is all right to express their feelings and be themselves. Campers and counselors alike learn to take risks, such as shedding tears when it is time to say goodbye.
At the request of the campers, after-camp group activities have been planned, including a picnic and attendance at a Pittsburgh Pirates baseball game. The most ambitious expansion of the program was the implementation of a Young Adult Amputee Ski Weekend in 1984. Seventeen adolescents learned sled skiing for bilateral amputees, three-track downhill skiing for lower-limb amputees, and pole-less downhill skiing for upper-limb amputees at a local resort.
Following the seventh annual camp, an executive committee was formed to improve the organization for funding, staffing and implementing the camp. The membership of the committee currently consists of representatives of a) the Vectors, a nonprofit community service organization; b) administrative and medical staffs of the Children's Hospital of Pittsburgh; and c) other interested professionals.
Each July, the Executive Committee chooses a coordinator for the next Adolescent Amputee Camp. The coordinator chairs the Planning Committee, which is responsible for the operational planning and running of the camp. The coordinator also appoints subcommittees for medical supervision, fund raising, public relations and program development.
The Planning Committee observes the following schedule:
February Staffs the organization for the coming camp year and approves the budget.
March Approves the camp brochure, poster and mailing list.
April Mails advertising materials. Last year 925 letters were sent to health care professionals.
May Approves the camp program and selection of counselors and reviews the medical needs of the individual campers.
June Orients the counselors, emphasizing listening skills.
Recruitment of new campers and public awareness are the main functions of public relations for the program. Public relations are fostered by physical therapists, occupational therapists and social workers, who come in contact with parents and children in the clinics, and by school nurses in the community who may know of potential campers. Other traditional publicity means are employed, including radio and television talk shows; public service announcements on radio, television and in the newspapers; posters placed in hospitals, prosthetic companies and local businesses; and a targeted mailing of brochures to parents, health professionals and health agencies. The budget is based on needs established from the previous camp year. Two thirds of the budget is devoted to housing and food costs. Other budget items are activities, transportation and printing. Campers do not pay a fee.
Annual funding of the camp-workshop and other amputee programs continues to be an important concern in the continuation of the program. In the past, the camp was funded by donations from interested individuals, prosthetic companies, community service organizations, and foundation grants. The cost of the camp is escalating. In 1976, the cost per camper and staff was only $26.21 compared with $72.11 in 1984. Consequently, alternate means of fund-raising are being explored. A raffle was successfully used in 1984 to raise 40 percent of the funds needed.
The program has maintained a tax-exempt status by its association with Children's Hospital of Pittsburgh. Other alternatives to maintain the status would be association with a nonprofit community organization or developing the same status as a free-standing organization. As presently organized, the programs appear to meet the Federal requirements for tax-exempt status. The Executive Committee is now applying for tax exempt status as a private nonprofit organization.
The Adolescent Amputee Camp brings together very special people, giving them the opportunity to share unique events in their lives and to learn about others with similar problems. The program was designed to help campers see the choices and the possibilities open to them, and to help them realize that they do not have to be limited by the loss of a limb. Many campers stated that camp was the first time that they felt comfortable enough to wear shorts and to swim in public without people staring and asking insensitive questions.
A very few children do not fare well at the camp, particularly those who cannot tolerate the emotional and physical separation from the family. Therefore, it is important that the social worker present the prospect of camping to the adolescent and family in a positive manner, especially when family dynamics are not optimal.
Plans are proceeding for the tenth annual camp. Changes contemplated include a longer camp (Thursday evening to Sunday afternoon), an increased variety of sports activities, and a different site. Many locales are suitable, such as scout or church campgrounds with provision for swimming and indoor and outdoor activities, as long as the site is away from the city.
The close association of the camp with the Children's Hospital of Pittsburgh has increased the credibility of the program in the community and has also built parent confidence in the program. Efforts are being made to add other community sources of financial support to prevent the program from being identified with a single institution. Also, health professionals from other Pittsburgh hospitals and agencies, individuals from Pittsburgh businesses, and people from other parts of the state have participated on the Planning Committee and as counselors for the camp weekend. Input from the diverse group of individuals and agencies broadens the appeal of the program in the community.
The coordinators for the program have benefited from the knowledge gained from the camp's founders, from several years of experience working with the campers and from feedback received from past participants regarding the camp experience. The information has, in turn, been used each year to improve programming.
It is hoped that our experience will stimulate the development of similar programs and will foster an exchange of information among all camp-workshops.
*Children's Hospital of Pittsburgh, 125 Desoto Street, Pittsburgh, PA 15213
- M. W. Clark; S. McCloskey; and L. Anderson: Inter-Clin Inform Bull 16:1-16, 1977 2. Ibid., p. 1.