Children and adolescents who have undergone treatment for brain tumors may be more likely to exhibit behavior problems than their peers. There have been relatively few formal studies of this issue, and behavior problems have often not been included in studies of neuropsychological outcome following treatment. Studies which have been done, using parent rating scales, suggest that children who are newly diagnosed with brain tumors have a higher incidence of social and adjustment difficulties than well children, but not necessarily greater than children who are newly diagnosed with other forms of cancer. So far, research has been unable to show a link between specific treatment variables (e.g., cranial radiation) and problems with behavior.

However, studies have begun to suggest that weaker social adjustment and more behavior problems may be related to younger age at the time of treatment, various types of family stress, and perhaps greater time since treatment. Careful study of the incidence of behavior or adjustment problems in these children, or their complex relationship to treatment and other variables, will require multiple sources of information (parents, teachers, children themselves) collected over time from a large group of patients with different types of brain tumors. We will not have solid predictions for parents regarding the impact of a particular tumor on their child's behavior until such time as this careful research has been conducted. It is likely that children's social adjustment and behavior following treatment for a brain tumor will show important correlations to their difficulties in their areas (i.e., intellectual or school problems, sensory or motor problems, cosmetic or functional impairments) following treatment.

In the meantime, we do know that children who have suffered various types of brain damage may be more vulnerable to psychological and social adjustment difficulties. Further, parents of children who have been treated for brain tumors frequently report changes in their children's behavior. The first question which they raise is, "Why?" It is difficult to generalize across children of different ages, with different types of tumors, who have received different kinds of treatment. But there are a number of possible factors which may contribute to the occurrence of children's problem behavior, some of which may be true for a particular child: damage to areas of the brain which play a role in the regulation of emotions; damage to areas of the brain which play a role in the inhibition of behavior (which can result in impassivity or decreased tolerance for frustration); damage to areas of the brain which play a role in language (since the expression of thoughts and feelings in words can sometimes prevent their expression in behavior); damage to areas of the brain which play a role in understanding social situations, reading nonverbal cues from other people, etc. (which can result in increased frustration or conflicts with others); undiagnosed or inadequately treated endocrine abnormalities (e.g., low thyroid hormone, which can cause depressed mood) active treatment with steroids (i.e., Decadron, which can cause depressed mood, sleep and behavioral disturbances); learning problems, particularly problems with attention and concentration; strain in daily activities, including school; developmental changes, particularly when children have visible signs of difference from their peers which impact their social adjustment; stress during medical treatment, including many disruptions to a normal routine; points of increased worry regarding the child's medical condition (e.g., recurrence of symptoms, or routine scans); and other stress in the family (e.g., financial worries, conflict between parents and siblings, illness in another family member, work/leave issues, and insurance problems).

It is sometimes helpful for parents to understand which factors may play a role in their child's behavior, and it may be useful to discuss these with professionals involved in their care. In particular, it is important for parents to set realistic expectations for their children, given both the child's capacity for self control and the family's rules regarding what is appropriate or acceptable. Sometimes a child's behavior becomes a poor fit with the rest of family life. Regardless of what causes behavior problems, parents can respond to them in ways which make them decrease, or inadvertently respond to in ways which actually make them more likely. Therefore, the second question parents have is, "What do we do?"

There are simple rules to follow which always work to change children's behavior problems if they are followed carefully. Parents of children who have been sick sometimes feel reluctant to discipline that child too harshly. However, clear and consistent negative consequences for undesirable behaviors always make them decrease, while clear and consistent positive consequences for desirable behaviors make them increase. When children behave better, their relationships improve, they feel better about themselves, and they are happier. But the solution rests on a bit of effort from parents and other caregivers until the changes take hold.

There are five important rules of thumb: First, children thrive on structure and routine. This predictability is even more important when life becomes unpredictable or confusing to children because they have had a serious illness or experienced significant changes. Therefore, parents should work to increase daily routines and establish clear consequences for good and bad behavior. Second, any form of attention (even yelling or scolding) makes any behavior increase! It is important to ignore undesirable behavior whenever possible. Third, sometimes children can't come up with an alternative way of behaving (or expressing their negative feelings, etc.) on their own, and may even need it spelled out to them ("I would like you to..."). It is important for parents to reward (and pay attention to) good behavior whenever they see it. Children are happier when parents find something to reward than when they find something to punish. Special time with parents can sometimes be used to reward which puts positive time into the relationship. Fourth, parents should only work on changing one behavior at a time, and it should be observable (e.g., hitting) rather than an interpretation (e.g., being mean). Once improvement has been seen in one problem behavior, parents are ready to move on to a second targeted behavior, and so on. Fifth, consequences need to be appropriate to the child's age and interests, and they should not be used for other behaviors at the same time. Consequences need to be immediate (the sooner, the more effective), consistent (at home and at school if possible), and contingent (the child should know that if he/she does X, then Y happens). Consequences should never be a surprise to the child if the parent is working to change a behavior. Sometimes a behavior will get worse very briefly when the consequences change; this is very short-lived, and improvement quickly follows this. If change does not occur, there is likely a problem with the choice of consequences (e.g., they may not be consistent across caregivers or they may not be meaningful to the child).

"Do we need help?" Families of children who have undergone treatment for brain tumors have already been through a lot of stress. I recommend that parents have a low threshold for seeking advice or consultation from a professional to help with anything that troubles them, and behavior problems are no exception. In particular, it is important to seek help for behavior problems if: the parent-child relationship is suffering; or if the child's behavior is having a negative impact on his/her relationships with peers, school adjustment, or self-esteem. Consultation may help parents set realistic expectations, develop a program of consequences which is effective, or explore whether children have emotional concerns. This can help life be as normal and happy as possible.

Dr. Mary Ann McCabe is a Clinical Psychologist and Director of the Office for Policy and Communications at the Society for Research in Child Development in Washington, DC. She is an Associate Clinical Professor of Pediatrics at the George Washington University School of Medicine. Dr. McCabe began the psychosocial program in the Hematology/Oncology Department at the Children’s national Medical Center (CNMC). While at Children’s, Dr. McCabe worked extensively with young people diagnosed with brain tumors and their families, including long-term survivors, in terms of the neurocognitive, emotional and social aspects of their disease and treatment. She also collaborated with oncologists, neurologists, and neurosurgeons in research on the neurocognitive sequelae of brain tumors. Dr. McCabe currently maintains a clinical practice in Arlington, VA.

This article was written for the Childhood Brain Tumor Foundation, Germantown, MD, www.childhoodbraintumor.org.