How do you tell a seven-year-old she has cancer? How do you tell the same to a 17-year-old? Answers aren’t entirely clear.
“Some of the first questions parents will ask when their child is diagnosed with cancer are ‘Do I tell my child?’ ‘What do I tell my child?’ or ‘How do I tell my child?’
Unfortunately, we don’t have a scientific basis for how to do this best with children,” said Cynthia A. Gerhardt, PhD, a pediatric psychologist and principal investigator in the Center for Biobehavioral Health at The Research Institute at Nationwide Children’s Hospital. “We have guidelines from the National Cancer Institute that say we should be open and honest with kids about their diagnosis, but there is virtually no empirical data to support whether that’s good for all kids.” As a scientist at Nationwide Children’s, Dr. Gerhardt is studying the impact of stress on children and families, especially related to chronic childhood illnesses like cancer. She hopes that her findings will help inform physicians and families how to talk to kids about a cancer diagnosis and provide interventions for kids who may be at increased risk for having psychosocial difficulties related to their cancer. “Even though we might cure more children of cancer, some will have ongoing difficulties,” said Dr. Gerhardt.
To help guide best practice in talking to children about cancer, Dr. Gerhardt is examining how parents are currently doing so. One project, a multi-center study led by Dr. Bruce Compas at Vanderbilt University Medical Center, looks at how families cope with and communicate about an initial diagnosis or relapse of childhood cancer. Dr. Gerhardt’s team works with families within the first few weeks of diagnosis to document what they’re communicating to the child. The research team then evaluates these factors over the course of the illness, sometimes asking the families to come to the lab to be observed while talking about cancer. The goal is to determine whether early communication factors can be predictive of who is going to cope well or poorly with the diagnosis. Early findings indicate that a child’s personality or temperament may play an important role in how families communicate and cope in the context of childhood cancer.
Dr. Gerhardt is also looking at peer influences to understand how cancer affects the social world of kids in the classroom. How does having cancer affect how children get along with their peer group? Do they still have friends and can their friends serve as a buffer from some of the stress of having a severe illness? “When we began this work we were worried about children with cancer being teased at school,” said Dr. Gerhardt. “We wondered if kids would pick on them because they were bald and looked different or if peers would be afraid that they would catch cancer.” After visiting schools and examining how children with cancer transition back to the classroom, Dr. Gerhardt, in collaboration with Nationwide Children’s colleague and principal investigator Kathryn Vannatta, PhD, has found that generally schoolmates rally around children with cancer and the children are often well liked. However, their research has shown that the same can’t be said for children with brain cancer. “We’ve seen that children with brain tumors or children who have received cancer treatments that affect the central nervous system, fall behind academically, display fewer leadership behaviors in the classroom, are more sensitive and isolated, may be victimized more and may not have as many friends,” said Dr. Gerhardt.
As researchers identify risk factors related to adjustment, they can help design interventions that could help improve quality of life for these children. “Since we’re finding that children with brain tumors have difficulty in school, we’re determining whether we need to be doing more work with their peer group, whether it would it be better to work with the patients individually to teach them specific cognitive skills that might be disrupted because of treatment, or should we work with the family to set up social opportunities for the child,” said Dr. Gerhardt.
These findings can also inform treatment strategies to help physicians and families make decisions about whether the treatment benefits outweigh the risks. “A lot of early work with children with cancer showed that many of the kids had difficulty as a result of cranial radiation. In turn, physicians started to push back some treatments in order to reduce the amount of radiation a child received to help minimize late effects.” Soon Dr. Gerhardt will collaborate on a study led by Dr. Vannatta to examine how brain tumors or cranial radiation affect different parts of the brain that might be important in social interactions.
Dr. Gerhardt is also studying peer influences for siblings of children with cancer. “Cancer does not occur in a vacuum, and it’s a family disease,” said Dr. Gerhardt. “Whatever happens to kids happens to the whole family system. Siblings have been overlooked a lot in the literature and they get overlooked clinically. When we take care of families, we see the parents and the patient a lot, but the siblings can get lost in the midst of it all.”
One of Dr. Gerhardt’s multi-site projects involves more than 100 siblings who had a brother or sister die of cancer. To understand more about their experience, researchers visited schools to learn how these children were functioning in terms of their peer relationships and academics and also visited the children in their home to assess the family. “We’re finding that these bereaved siblings are struggling and having more difficulties in terms of their emotional adjustment and behavior,” said Dr. Gerhardt. The team is planning a five-year follow up that could help inform interventions to help bereaved families.
With a recent grant from the National Palliative Care Research Center, Dr. Gerhardt will also examine other end-of-life issues that families of children with cancer and chronic illness encounter. “There is some evidence of significant suffering among children at end of life,” said Dr. Gerhardt. “Most of this evidence comes from nursing or parental reports of symptoms after the child has died. We’re trying to prospectively look at how the child, parents and nurses perceive symptoms near the end of life in order to begin identifying where gaps in communication and symptom management exist.” Future research involves following the parents and siblings for the first year after the child has died to determine how factors surrounding end-of-life care impacts outcomes for bereaved family members in the early grief process.
Dr. Gerhardt says that studying how families cope during the entire spectrum of childhood cancer, from diagnosis to survivorship or end-of-life, will facilitate improved quality of life for all family members even after they have left the hospital. “Not all children and families are going to have problems coping with cancer. In fact, many are quite resilient,” said Dr. Gerhardt. “But it’s our job to figure out who is at risk for difficulties and how to help them through.”
(Above) During a research task, a mother and daughter are videotaped while they solve an abstract problem. In this case, mom is asked to explain to her daughter how to put together a puzzle to match her own. Families are asked to participate in this task three to six months after the child has been diagnosed with cancer. Afterward they are also videotaped as they discuss the cancer diagnosis. Dr. Gerhardt and her team review the videos to examine how the parent and child problem solve and communicate together.
Dunn MJ, Rodriguez EM, Miller KS, Gerhardt CA, Vannatta K, Saylor M, Scheule CM, Compas BE. Direct Observation of Mother-Child Communication in Pediatric Cancer: Assessment of Verbal and Nonverbal Behavior and Emotion. J Pediatr Psychol. 2010 Jul 15. [Epub ahead of print]
Miller KS, Vannatta K, Compas BE, Vasey M, McGoron KD, Salley CG, Gerhardt CA. The role of coping and temperament in the adjustment of children with cancer. J Pediatr Psychol. 2009 Nov-Dec;34(10):1135-43.
Foster TL, Gilmer MJ, Davies B, Barrera M, Fairclough D, Vannatta K, Gerhardt CA. Bereaved parents’ and siblings’ reports of legacies created by children with cancer. J Pediatr Oncol Nurs. 2009 Nov-Dec;26(6):369-76.
Yeates KO, Bigler ED, Dennis M, Gerhardt CA, Rubin KH, Stancin T, Taylor HG, Vannatta K. Social outcomes in childhood brain disorder: a heuristic integration of social neuroscience and developmental psychology. Psychol Bull. 2007 May;133(3):535-56.