About Feelings - This Battle Which I Must Fight: Cancer in Canada's Children and Teenagers

Questions Commonly Asked about Cancer in Children and Teenagers

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ABOUT FEELINGS

HOW DO PARENTS FACE A DIAGNOSIS OF CANCER IN THEIR CHILD?

No parent is prepared for the news that his or her child has cancer. The initial shock and sadness can be overwhelming. "Why my child?" is a frequently-asked question and the absence of a clear answer can result in considerable anguish. The deluge of feelings can include disbelief, guilt, fear of the future, despair, anger and self-doubt. Because many adults have had experiences with family members or friends with cancer, they often harbour preconceptions, or even misconceptions, about the disease.

It is common for parents to experience a period of disorientation when their child is diagnosed with cancer. Lives are changed overnight. Plans, schedules and goals suddenly seem irrelevant, and the desire for their child's renewed health takes precedence. Some parents try to regain emotional equilibrium by focussing on the technical aspects of the disease. Others temporarily withdraw in an attempt to come to terms with their great fear and emotional pain. How a parent copes may be related not only to the medical status of his or her child but also to factors such as personal philosophy of life, flexibility, resources, support networks, and ability to come to terms with a situation that cannot be changed.

As difficult as they are, adjustments must be made to the demands of caring for a child who is very ill. Time to adjust to the situation is not available to most families affected by cancer. Most children with cancer are treated according to therapy protocols or regimens which require consent for treatment within hours or days of the diagnosis.

Once the parents understand the diagnosis and have learned about the prognosis, the treatment and its implications, they must face the task of telling their child that he or she has cancer. Undergoing diagnostic testing and being in hospital, perhaps for the first time, can be very frightening, especially to younger children. They need to know why invasive and sometimes painful procedures are necessary and why their parents are distressed. Children must receive honest and age-appropriate answers to their questions. Although conversations about diagnosis and treatment generally occur with assistance and guidance from the medical team, parents are usually the best ones to provide comfort and reassurance.

Other children in the family as well as extended family members must then be told the news. Beyond the family there are schools and employers who must be made aware of the anticipated impact on the family. Although telling others may bring some comfort and support, repeatedly relaying the diagnosis can be emotionally draining.

The aggressive nature of the therapy and the sheer volume of medical information compound the stress parents experience. Consenting to the administration of toxic therapies with many side effects triggers a complex array of emotions. Relief that therapy is available is tainted by its intensity and side effects. When their child is too young to contribute to decisions about therapy, parents feel the burden of making choices on their child's behalf. Fortunately, they can be reassured that treatment is available for most childhood cancers and outcomes are increasingly more favourable.

Financial pressures can become another source of anxiety and can cause very real suffering for the families of children with cancer. Although the cost of hospitalization is primarily the responsibility of the provincial and territorial health care systems, families accrue unanticipated financial burdens. Some drugs required during the course of treatment may not be covered by health insurance. Some children and teenagers require wigs, limb prostheses or other aids, and parents are often responsible for at least part of these costs. The travel, food and accommodation costs associated with hospital or clinic visits can be staggering, and are not eligible for compensation in all regions of Canada. The intensity and frequency of therapy often require one parent to take a leave of absence from work or to terminate employment. Arrangements for the care of other children in the family may be costly and difficult. Sadly, for many parents, the financial implications of a cancer diagnosis complicate the tasks of helping their child get well and caring for their other children.

Some sources of help for families in these difficult circumstances are listed in Appendix 4. The counselling department at the pediatric oncology centre may know of others.

The emotional and life-altering demands of a cancer diagnosis are heavy, and families are changed forever. Fortunately, most parents have the strengths and coping abilities needed to adjust to the diagnosis, therapy and far-reaching effects. As parents progress beyond the shock of diagnosis and the beginning of therapy, their confidence increases. Although crises may emerge along the way, the need to be strong for their children and the hope for a cure fuels their capacity for coping.(26)

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HOW DOES HAVING CANCER AFFECT CHILDREN AND TEENAGERS EMOTIONALLY AND SOCIALLY?

Separation from family, repeated painful procedures, nausea and vomiting with treatment, recovery from operations and infections, school absenteeism, physical changes, and fear of rejection by friends and classmates are some of the issues facing children and teenagers with cancer. While their need for achievement, recognition, and affiliation with others remains unchanged, their capacity to achieve normal developmental milestones may be compromised. How they cope depends on many factors, including their age.

Infants and toddlers, acutely affected by even brief separation from their parents, may become unco-operative and overly distressed, and may react negatively to all interventions, even those that are not painful. Preschool-age children, with their newly-acquired independence and autonomy, may revert to behaviours typical of a younger child. School-age children and teenagers, more able to grasp the seriousness of the situation, may become angry and resentful that their lives are interrupted and their quality of life threatened.

When children are distressed, it is more often related to the treatment and its side effects than to the disease itself. In the past, it was believed that if children did not verbally describe pain, they were not experiencing it.(75) Assessment methods have become more sophisticated, allowing the health care team to better measure a child's pain and to treat it appropriately, even in the absence of a verbal description from the child.(74)

Preparing children for stressful medical procedures is an important focus for health care professionals and parents alike.(58,73) Psychological techniques, along with medication, add to the pain control resources available to children. Effective aids include films showing children coping with procedures, puppets, books, relaxation techniques, hypnosis, and other approaches that can be personalized for a particular child or teenager.(63) Children and teenagers can manage better when they have some control over their pain and anxiety and know what to expect.(134) On the whole, children and teenagers have incredible strengths and resilience. They are not always distressed, and support and comfort go a long way towards alleviating pain and anxiety.

The child's school attendance and involvement in usual activities can be severely curtailed, limiting opportunities to maintain close ties with friends and hindering social development. Parents often become the primary support and peer group for their children. Increased awareness of the importance of school in a child's life has led to school re-entry programs that foster both social and academic skills. They prepare the child's classmates for his or her return, so that teasing is lessened and classmates are more able to provide social support. A treatment centre staff member may either visit the school or provide written materials that the teacher can use. Some parents of preschool-age children with cancer have formed play/learning groups to prepare their children for school and to help them acquire social skills.(30) Materials and resources to assist with school re-entry are described in Appendices 4 and 5.

Teenagers can be confronted by cancer-related issues that do not affect younger children as much or at all. A task force on teenagers and young adults with cancer concluded that, while all patients with cancer have different and relevant psychosocial problems, teenagers with cancer have a unique and important set of problems that must be considered when providing care.(102)

The need to be accepted and to be like everyone else is heightened during these years and any threat to a teenager's status with peers can be devastating.(35) Several types of cancer that occur more frequently in this age group seriously threaten a teenager's sexuality and physical abilities. Some treatments result in infertility. Cancers of soft tissue or bone can necessitate amputation of part of a limb.

Most teenagers are anxious to return to school but some may be adamant about not returning until the cancer experience is behind them and the threat of rejection by peers is lessened. For some, avoiding school may greatly increase their sense of isolation, inhibit social maturation, slow their educational progress, and possibly affect their roles as adults. However, while parents may be concerned about their son's or daughter's development and future, teenagers must be treated with respect, and their individuality and personal wishes recognized. Resources such as tutors and educational planning may be available.

Whether a teenager behaves more like a child or an adult can vary daily with the circumstances. This can be difficult for both parents and the teenagers themselves. As teenagers move towards greater maturity and independence, it is difficult for them to have to rely heavily on their parents to meet their needs during treatment. Their need for privacy, both emotional and physical, becomes another area for concern, as hospital routines and medical procedures invade privacy. Teenagers also tend to be more aware of the implications of having cancer than younger children and how their future may be compromised by it. Teenagers with cancer are often attempting to cope simultaneously with issues relating to identity, sexuality, fertility and mortality.(141) Nevertheless they can be very resourceful and most cope very well.

For all children and teenagers with cancer, the awareness that not everybody survives cancer is ongoing. Many are troubled episodically, particularly at critical times, such as during clinic visits and follow-up appointments, when they are reminded of the possibility of recurrence. These young people form strong alliances with each other. To comfort friends who have relapsed, or to attend the funeral of a fellow patient, requires compassion and maturity beyond their years. However, in spite of the many compromises and challenges facing young people with cancer, their ability to be oriented more to the present than to the future helps them cope exceptionally well. For the most part, they adapt much more readily than their parents. They develop tremendous empathy, and offer strength and encouragement to those around them.(25,51)

 

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