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Christy Winfree, M.S., Richard Williams, Ed.D.,
and Gwynn M. Powell, Ph.D.
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). I changed the punctuation in this sentence
— before, it read like you could have a “tumor of lymphoma” which according
to Webster’s does not make sense. Is this change OK? 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.
References
American Camping Association, (2002). Research.
Bates, E. A. (1986). Project gateway. Camping Magazine, 40, 28-31.
Bluebond-Langner, M., Perkel, D., Gorertzel, T., Nelson, K., & McGeary,
J. (1990).
Children’s knowledge of cancer and its treatment: Impact of an oncology
camp experience. The Journal of Pediatrics, 116, 207-213.
Bruneau, J.P.(1981). Soins infirmiers dans la dimension psychologique
de l’enfant mourant. Soins 26, 79-87.
Children’s Oncology Camping Association
(2002). Research.
Goertzel, L., & Goertzel, T. (1991). Health locus of control, self-concept,
and anxiety in pediatric cancer patients. Psychological Reports, 68, 531-540.
Katz, E. R., Dolgin M. J., & Varni, J.W. (1990). Cancer in childhood
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of Clinical Behavioral Pediatrics, Plenum, New York, 129-146.
Kyngas, H., Mikkonen, R., Nousiainen, E. M.; Rytilahti, M., Seppanen,
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cancer: Coping strategies and resources of young people with cancer. European
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Melman, J. E., & Sanders, J.A. (1986). Psychosocial aspects of childhood
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National Cancer Institute (2001).
Research.
Ross, D.M., & Ross, S.A. (1984). Stress reduction procedures for the
school-age hospitalized leukemic child. Pediatric Nursing, 10, 393- 395.
Thompson, R. H. & Stanford, G. (1981). Child life in hospitals: Theory
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Varni, J.W., Katz, E. R., Colegrove, R., & Dolgin, M. (1995). Perceived
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Originally published in the 2002 November/December
issue of Camping Magazine. |
