Cancer and the Family: Enhancing Communication When a Child or Parent has Cancer
Margaret L. Stuber, M.D., UCLA Professor of Psychiatry and Biobehavioral Sciences
This is a summary of a lecture presented on March 6, 2001.
Cancer can affect a family in many different ways depending on the family makeup, who in the family has the disease, and the age of the children involved. All children go through certain developmental stages as they mature into adults, and these stages can influence how they are affected by the presence of cancer and how they process information. To best manage the impact of cancer on individual family members, it is important to understand these different stages.
Children and adults do not process information in the same way. As children mature, their cognitive functioning changes. Preschoolers, for example, may be able to repeat information that is given to them, but their understanding of cause-and-effect relationships is not the same as that of adults. At the preschool age, children often have magical thinking, including a belief that their thoughts or feelings can cause things to happen. Processing information in this way can lead children to believe that their anger, strong feelings or bad behavior caused another person’s illness. As children enter the elementary school years, their thinking becomes less magical, but they still tend to view the world in very concrete ways. They often seek information because they are eager to understand what is happening around them, but they usually cannot put together abstract concepts. They do not understand that situations often have multiple causes, and they tend to see the world in black and white terms. By about the age of 11, children theoretically are able to think more abstractly and appreciate the variety of causes of events. It should be noted that under stress both children and adults often regress to earlier ways of thinking and can become concrete or magical in their thought processes.
These different stages of cognitive development influence what information children need and want to know as well as how they will process this information. Adults often believe that they have prepared their children well by giving them factual information about a situation; the children, however, may not really understand and may impose their own convoluted explanations on this information. As an example, one child believed that his father became ill with cancer because he played too much tennis. He remembered hearing his mother tell his father that he was going to make himself sick if he continued to play so much tennis. When his father got sick, the child believed that tennis was the cause, and he was angry with his father for not listening to his mother. In fact, playing tennis and not heeding the mother’s words had nothing to do with the father having cancer, but these pieces of information influenced the child’s interpretation of the situation. Once the parents understood this child’s way of thinking, they were able to help him understand, to alleviate his fears and anger and to direct his feelings in a more appropriate way.
Cognitive development is not the only consideration for families who are dealing with the presence of cancer. Cancer in the family can disrupt and derail normal developmental phases. For example, children who are toddlers and teens are in phases of development in which dependency and autonomy issues are extremely important. At these stages, their developmental tasks are to move away from dependency and toward more autonomous behavior. If they are diagnosed with cancer during these phases, they will be forced to become more dependent at a time when normal development dictates otherwise, which is likely to lead to difficulties.
Similarly, young adults who are in the process of separating from their families of origin often have psychological distress and difficulties that may exist both during and after a cancer diagnosis. The patient role is inherently a dependent one and therefore is likely to produce crises around autonomy. An adolescent or young adult child whose parent becomes ill from cancer may also be placed in developmental conflict. At a time when they are trying to move away from their families, they may be pulled back by the demands that the illness places on them. It is important to recognize the possibility of this conflict between the family needs and social/developmental world of the child but it often is difficult to know what to do in these circumstances because the crisis of diagnosis and treatment dictates the needs. However, being aware of these developmental issues allows for the possibility of greater understanding of the stresses that are being placed on family members and the adaptations that they must make.
Reactions to the diagnosis
Children of different ages relate to the crisis of illness in different ways. Young children often have a very basic concern, which is “Who will take care of me?” When this issue is addressed directly, children often become more comfortable and better able to tolerate the unpredictability of the illness. Children of all ages need consistency, which sometimes is a problem with cancer because the disease is unpredictable. Older children often regard the presence of cancer in their family as an inconvenience. Their words may seem hurtful and insensitive and may not take into account the needs of the ill parent. An adolescent whose mother’s cancer recurred just before Christmas responded to this bad news with “There go the holidays.” The feeling that this child was responding to was deprivation. The child may well have had other feelings but was most comfortable in raising the one of deprivation. It may have been a cover for the other more frightening feelings that the child could not acknowledge such as fear that the parent might die and a fear of abandonment.
Children and adolescents may appear somewhat cruel in the way that they relate to another child with cancer or to a child whose parent has cancer. Children sometimes tease or attempt to make the other person seem weird or different. Part of this behavior may be an attempt to distance oneself from the fear that this situation could happen to them. Adults usually deal with such feelings by simply avoiding social contact. Children and sometimes adolescents are more likely to try to avoid the unpleasant and frightening by making fun of or ostracizing someone. Classroom interventions often help to minimize this behavior by taking steps to better inform the children about what is going on. One common intervention is to have class members give reports on the illness, thus getting them involved in ways that can deepen understanding of the experience.
The presence of cancer in the family may affect children in other ways depending on the specifics of the individual family. For example, an adolescent girl who is developing breasts and whose mother is diagnosed with breast cancer may have a particularly difficult time dealing with her mother’s illness. It may raise questions about her identity as a young woman. The presence of cancer often is more threatening for children in single-parent families. Children with only one parent often have a stronger fear of abandonment, which may influence how they cope with their parent’s illness. These and many other factors determine the kinds of interventions and communications needed to provide the reassurance that each family member needs during this difficult time.
Communication and trust
Many families have questions about how much information they should give to their children when a family member has cancer. While there are no concrete guidelines about what to say, it is important to remember that trust needs to be maintained, which requires honesty. Children of all ages often know more than adults realize. They tend to be keenly sensitive to the feelings of adult family members. This is an adaptive response. Just because a child does not see a parent crying does not mean that the child is unaware of the parent’s distress. If the child then is not told what the problem is, he or she is likely to invent a reason for the parent’s upset, which usually will have the child as the center or the cause. Children tend to be egocentric. Their world revolves around them, which often makes them feel responsible for things that have nothing to do with them.
When talking to children about cancer, it is important to take into consideration their age and their developmental stage and to be able to anticipate and respond to their needs. Above all, it is important to maintain trust and openness. Adults often want to postpone telling their children (even adult children) about a diagnosis particularly when the children are away at school or living far away. It may be appropriate to wait until the full details are known, but waiting too long may create more anxiety and distrust once the information is shared. Children who are away at college may have less anxiety if they know that they will be notified when there are significant changes. Knowing that they will be kept informed will allow them to carry on with their lives with less disruption rather than being worried that things are happening that are not being shared.
Feelings of helplessness
Cancer places a tremendous burden on any family. It changes family activities. It changes energy levels. It disrupts routines. Most family members have some negative feelings, including anger, about these changes and disruptions. Anger is an appropriate reaction, but if it is not dealt with constructively, it can lead to feeling guilty about being angry with someone who is ill or with the situation itself. In situations where the illness is prolonged and becomes increasingly difficult for everyone, many people catch themselves wishing that it would just be over and then are horrified at having that thought. It is important to recognize that these emotions and thoughts are normal and to find ways to express them as they arise before they become guilt and resentment. Guilt and resentment are relationship-wreckers.
Feelings of helplessness are very common to the cancer experience. Family members often feel varying degrees of helplessness depending on their roles within the family. Family members who are not part of the decision-making process often feel the most helpless. Grandparents of a child with cancer may feel unable to help their children as well as the grandchild and have no role in treatment decisions. Adult children whose
parents have cancer and are able to make all their own decisions often have similar feelings. People who are depressed or anxious tend to become more so in the presence of cancer, and these feelings can contribute to a sense of helplessness.
Good communication among family members is one of the most important coping strategies when dealing with cancer in the family. Distraction also can be an important tool. Family members may feel that it is not okay to laugh or have fun during this serious time, but being able to get away from the cancer experience for at least brief periods of time is essential. Family activities that produce laughter can be especially helpful as laughter helps the body to relax. Meditation, yoga or guided imagery are other forms of distraction that can create relaxation and reduce stress. Reducing stress is a healthy form of coping. Denial is harmful only when it keeps people from getting the treatment that they need. A little bit of denial can be a healthy way to distract oneself from the enormities of the cancer experience. Segmenting one’s life and having things to do that are not stressful and are unrelated to cancer also can help one cope with cancer. Belonging to a support group or a community that understands one’s situation also can be very beneficial. Participation in these groups provides the opportunity to vent frustrations and fears and to share ideas, experiences, mistakes and solutions to problems.
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