Since childhood cancer has evolved from an inevitably fatal illness to a life-threatening chronic disease, children with cancer receive many positive benefits by participating in a camp experience. These children can have a variety of limitations, but first and foremost, they are still children — and want to be treated the same as children without cancer with opportunities to run, play, swim, and enjoy being with other kids.
The most frequent types of pediatric cancer include leukemia; tumors of the central nervous system, sympathetic nervous system, kidneys, and bone; and lymphoma (Bleyer, 1990). Because of the increase in long-term survival, quality-of-life issues have taken a more prominent role in the comprehensive treatment for childhood cancer. The trend in survivability has led to a shift in psychological emphasis from crisis intervention and confronting death to facilitating and making adjustments to a serious life-threatening chronic disease (Katz, Dolgin, & Varni, 1990).
Chronic illnesses can be devastating to a person at any age. During childhood, it can be especially destructive for the child’s psychological growth and development. At a time when most children are deciding which sport to play, pediatric cancer patients have their lives disrupted as they are faced with harsh treatment methods such as chemotherapy and radiation in an attempt to eradicate the cancer from their bodies.
A number of strategies have been used to reduce feelings of anxiety experienced by pediatric cancer patients, including “diversions or activities as means of catharsis” (Goertzel & Goertzel, 1991, p. 538). One relatively new method that has been used to help children cope with their terminal illness has been the development of summer camp programs designed especially to meet their needs.
Children with cancer did not become involved in organized camping until the late 1970s and early 1980s, because it was thought that the danger for the children was too great and not worth the risk of additional pain or injury. However, it has been recognized that the camp experience is very valuable and can have positive impacts on all individuals. According to the Children’s Oncology Camping Association (2002), there are currently seventy-six camps that have been established to provide children with cancer a chance to participate in the camp experience but more opportunities are still needed.
Camp Rainbow is just one example of a camp program that has proven to be an effective intervention for children with cancer. By making minor adjustments (see Sidebar on page 30) to programs and providing children with recreational activities, they are able to receive many benefits as well as learn coping skills necessary to face the many issues brought on as a result of their diagnosis and treatment process. Some of the critical issues that the camp experience helps children address are:
- psychological effects of the disease;
- bodily changes;
- how they perceive themselves; and
- coping abilities of parents and siblings.
Psychological Effects as a Result of the Disease
One of the first issues that children with cancer face is how to adjust psychologically and socially to living with this disease. As a result of the progress in medical therapy, the psychological dilemma has been transformed from one of adapting to death to coping with uncertain survival. According to Bruneau (1981), a child with a potentially fatal disease undergoes psychological reactions in four different stages:
- suspicion of having a serious disease, which leads to a sick child’s identification with the staff and is shown as an eagerness to learn about medical terms;
- aggression that comes from the child revolting against the disease but realizing that there is no use;
- sinking into depression; and
- finally, experiencing feelings of grief.
Anxiety is a behavior that is commonly seen in all children with cancer when they are diagnosed with cancer and becomes aware of the seriousness of the disease (Kyngas, Mikkonen, Nousiainen, Rytilahti, Seppanen, Vaattovaara & Jamsa, 2001). Researchers have concluded that children with cancer experience significantly more anxiety related to the seriousness of their illness than children with non-fatal chronic illnesses and that children with cancer experience more anxiety during the progression of the disease and with each clinic visit. Even when children are in remission, they can still experience disease-related anxiety. It is this chronic uncertainty about relapse and survival that poses a significant threat for the child living with cancer. The amount of information children receive determines the level of their anxiety and other psychological effects that they will experience. If children are not told the truth about their disease, their anxiety levels will increase. As a result, they will have unrealistic fantasies leading to depression, withdrawal, and fear.
Thompson and Stanford (1981) reported a relationship between the decrease in anxiety and the knowledge children with cancer gain about their disease. Melman and Sanders (1986) concluded that children with an increased amount of knowledge regarding their disease were able to contribute positively to their psychosocial well-being.
Benefits of camp: reducing disease-related anxiety
Camps are effective modalities for reducing fear and anxiety in children with cancer by providing opportunities where they can interact with other children and learn ways to cope with cancer. A study by Bluebond-Langner, Perkel, Goertzel, Nelson, & McGeary (1990) was designed to determine whether cancer and its treatment were discussed informally among first- time campers diagnosed with cancer. Results suggested that when such informal discussions occurred there was a significant increase in the children’s knowledge about cancer and its treatment. Perhaps the most important results were an increased amount of knowledge in each group, especially in younger campers. The study results confirmed that a large amount of free- flowing conversation occurred between children regarding their type of cancer and where they were being treated. Children in the study often introduced themselves by the cancer they had and openly discussed side effects from treatments and how they were coping with their illnesses. For most campers, having opportunities to learn and acquire knowledge from other children who were undergoing similar experiences was beneficial. It was reported that knowledge of cancer was found to be positively related to self-image and aided in better adjustment for the children attending the cancer camp.
Bodily Changes as a Result of the Disease and Treatment
Besides psychological effects, children with cancer also experience changes in their physical appearance. The chemotherapy and radiation therapy that a child undergoes has many harsh side effects. These side effects may be reversible, such as weight gains or losses, loss of hair, and mouth ulcers, or may be permanent such as amputation or skeletal abnormalities. The impact of visible disfigurements, especially hair loss, is one of the most common side effects of cancer treatment. The change in physi-cal image is a constant reminder for children with cancer that they are different from other children. The side effects of treatment continuously change the child’s body image and often cause a loss of self-esteem for the child. This loss of self-esteem can also lead to a lack of self-confidence resulting in regressive behavior, a withdrawal from peers and a fear about going to school — thus affecting their emotional and social adjustments, as well as their academic performances. Children with physical disorders who experience this disease and treatment-related changes in physical appearance are at a greater risk for difficulties with peer relations and may face teasing, questions, and comments from peers, in addition to relating their concern of feeling different and unattractive. Participants in a study by Ross and Ross (1984)
reported that being teased on returning to school because of hair loss from chemotherapy, weight gain from medicines, or weight loss from the disease was worse than physical pain from the disease and treatment procedures. During the childhood years, physical appearance and social acceptance are important predictors of adjustment. Varni, Katz, Colegrove, and Dolgin (1995) concluded that higher perceived physical appearance predicted lower depressive and anxious symptoms and higher general self-esteem.
Benefits of camp: bodily changes
When children are able to interact with others like themselves, they are able to realize that they are not alone. Camps can offer children with cancer the opportunity to interact with peers who accept their limitations as well as with others who have or are experiencing similar physical changes. Children are able to tell each other what treatments they have undergone, the physical changes that resulted, and ways they are coping with the changes. Opportunities such as these allow children with cancer to discover interests, enhance skills, and develop a greater respect for themselves and their abilities (Varni, et al., 1995). According to research, when chil-dren with cancer attend camp, they develop better self-concepts and enhance their self-esteem. These changes allow chil-dren to deal more effectively with comments that they will face from peers at school, thus enabling them to fit into their social environment, as well as enhance academic performance (Melman & Sanders, 1986). When children feel competent, they are able to feel good about themselves, interact with others, and be less anxious (Children’s Oncology Camps of America, 2002).
Change in the Child/Adolescent’s Perception of Self as a Result of the Disease
The new role of being sick or different involves a change in nearly every aspect of the child’s life. Children will experience a change in their relationship with other people and in their perception of themselves. The illness also causes major developmental changes in the areas of control and competence. This developmental change is a factor that must be managed in order for children and adolescents to have greater control of self and autonomy. The illness deprives the child of control of daily routine, privacy, relationships with family and friends, and control of life itself. When children and adolescents feel in control, they are motivated to take better care of themselves. This concept is known as locus of control. According to this theory, individuals differ in their beliefs about their ability to take active steps to promote their own health. Individuals with an internal locus of control are more likely to take positive steps to control their health behaviors and to experience less anxiety. Research by Goertzel and Goertzel (1991) focused on children’s self-concept, locus of control, and level of anxiety. Participants ranged in age from eight to eighteen, had a diagnosis of leukemia, and were all outpatients who attended the American Cancer Society Camp. The results suggested that an individual could do a great deal to control his/her personal health and showed that they were able to decrease their levels of anxiety through participating in activities such as sports, gardening, talking to friends, drawing, and receiving support from family and friends.
Benefits of camps: self-perception
For children with cancer, camps can provide both support and opportunities to be in control of their experiences. By choosing the activities in which they wish to participate, they are able to gain a sense of normalcy. It is important for camps to allow campers these opportunities, since many children and adolescents have come from environments where they have little independence as a result of their many hospitalizations and protective parents. When children and adolescents are given this freedom, they are able to participate in activities that help them master their feelings and gain a greater sense of autonomy. Bates (1984) conducted research on eighty-four campers with a variety of disabilities including cerebral palsy, sickle cell anemia, brain tumors, diabetes, asthma, and congenital defects to determine how a camp experience affected their lives. It was reported that an increase in self-esteem resulting from camp better prepared these children to compete in society. In addition, it was concluded that camp is a learning and enriching experience for all who participate. When children go to camp, they learn to be more independent and acquire social skills. Furthermore, it was noted that the positive view of self and life gained during camp experiences ultimately reduces an individual’s dependence on others.
Coping Abilities of Parents and Siblings as a Result of a Cancer Diagnosis
A final issue with which children with cancer have to deal is the way their parents and siblings react to and cope with their diagnoses. The disease can have both positive and negative effects for each family member — especially the child with cancer — depending on parents’ perception and coping abilities. Researchers have concluded that anxiety, grief, anger, hostility, guilt, and disbelief are the responses most often observed in parents (Kyngas et al., 2001). Parents’ reactions to the disease not only influence their own approach to parenting but place extra demands on their parenting skills. For example, parents are faced with the role of having to talk with their child about the disease, support the child, take care of the child’s physical condition, and prepare the child for death as well as living. Although parents are advised to treat their child as normally as possible, many parents overprotect and overindulge their child. When this occurs, children are either brought up in environments where there are too many rules limiting their independence or environments where no structure is provided. The child’s cancer treatments can also disrupt the family routine and lifestyle, requiring a change in family rules, goals, and expectations for the future. Anxiety and depression often occur in as many as 50 percent of these parents — with most of these symptoms disappearing during the treatment phase.
An increasing amount of attention is being given to the emotional problems shown in siblings of children with cancer. Parents have often reported that their healthy children displayed symptoms of irritability, feelings of guilt and jealousy, academic underachievement, and behaviors of acting-out. Also, during this time, siblings reported feeling the loss of a close relationship with their parents and feeling isolated from supportive systems outside the family. These feelings of isolation, guilt, and jealousy may be aggravated when siblings have not received reliable information to explain the change in parental attitude. Often families have not discussed the disease or have given insufficient information about the disease to the siblings. Siblings must be made aware of what is happening to their brother or sister who has cancer and have their concerns discussed and validated. Also, siblings must be made to feel they are important and can play effective roles in helping their brother or sister get through their treatments.
Benefits of camp: parents and siblings
Camps are able to provide benefits to all family members. Camps provide parents with respite assurance that their child is in a safe environment. While children are at camp, they can gain independence from parents, meet friends, develop new skills, and discover new interests by participating in activities that may not have been available at home (e.g., canoeing, sailing, swimming). Some camps even offer special support programs for parents to attend at the same time as their child. These programs provide opportunities for parents to relax, gain support from other parents, and spend quality time with their child in a fun environment. According to the Children’s Oncology Camping Association (2002), there are camps that have been created so that both children with cancer and their siblings can attend. Studies on these types of camps have found that children with cancer and their siblings are able to connect in a “normal” environment by participating in activities together, thus resulting in the formation of a stronger bond. Siblings also gain support from other siblings who are experiencing the same things they are going through. Through the camp experience, siblings are able to discover they are not alone, are able to have their feelings validated, and discover effective ways to cope.
A Beneficial Environment
Overall, camps have proven to be a beneficial environment for all children — especially those with cancer. Through the camp experience, they can learn many of the skills necessary to meet the extraordinary challenges that they will face while fighting their disease and the everyday struggles of life. Camp allows children with the cancer the opportunity to be themselves by allowing the focus to be off of their disease and on meeting friends, swimming, sailing, horseback riding, and making crafts. By participating in enriching camp experiences, these children are able to gain confidence in themselves and learn activities that they can carry with them throughout their lives. While at camp, children are able to develop skills and abilities as well as see that they are still able to do many of the same activities as everyone else. Camp directors need only to examine their current programs and discuss possible modifications with staff in order to incorporate children with cancer into their programs. Cancer need not be a limitation that prevents children from being children. In essence, we all have limitations, but with the proper support we are able to overcome obstacles, learn ways to cope, and develop the necessary skills for adapting to any circumstance we face.
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Christy Winfree, M.S., is a recent graduate from the Recreation Therapy Administration master’s program at East Carolina University. She received her B.S. in child life and is a certified child life specialist. She has had experience in camps for children with cancer and traumatic brain injuries.
Richard Williams, Ed.D., is an assistant professor in the Department of Recreation and Leisure Studies at East Carolina University. He received his M.A. and Ed.D. from the University of Georgia and is a certified therapeutic recreation specialist.
Gwynn M. Powell, Ph.D. is an assistant professor at the University of Georgia teaching recreation and camp administration. She has twelve years of professional year-round experience in camp. Please contact Powell through e-mail, email@example.com for further information regarding article content or to share research ideas.
Special thanks to the faculty of the Recreation and Leisure Studies department at East Carolina University.
Originally published in the 2002 November/December issue of Camping Magazine.