When cancer happens…

When cancer happens, it happens to the whole family. Parenting while healthy has its own stressors, but raising a child becomes more complex when a parent faces a cancer diagnosis. As of 2010, there were 1.58 million adult cancer survivors in the United States living with a child under the age of 18 (Weaver et al., 2010).

Talking to children about cancer is challenging for parents. Some may instinctively resist revealing the diagnosis to their children as a protective measure. Others will underestimate the impact the diagnosis has on their children, thinking that if they seem ok, then it must be so. Still others may fear that an open discussion will heighten the child’s anxiety. Simultaneously, parents will be working through their own concerns, feeling overwhelmed and without the tools to discuss the cancer diagnosis with their children. 

Children are very observant. They pick up on emotions, even if they do not understand words. When children do not understand something they draw conclusions based on their limited experiences, which creates misconceptions. Children and teens are also very resilient, and will try to cope on their own so as not add stress to an already upsetting situation. There are developmentally appropriate ways adults can approach children when having “the cancer talk”. This is not a one-time conversation, but rather multiple discussions that occur throughout the cancer journey.

It is imperative to consider a child’s level of development when discussing cancer, and to realize that all children will process the information differently. Adults should explain unfamiliar language—words like cancer or chemotherapy—to help children comprehend what the words mean in understandable and age-appropriate language. Care must be taken to avoid words and phrases that have dual meanings—like dye versus die, or saying “put to sleep” to refer to anesthesia. The level of stress a child feels surrounding a parent’s surgery or treatment can increase when language is misinterpreted.

• Infants and toddlers have no real concept of illness, though as language perception increases they may be able to understand simple terms such as “boo-boo.” At this age, their reactions often come as a result of the stress the diagnosis places on the caregiver—usually via disrupted routines, separation anxiety or overt negative emotions. These children can experience sleep disruptions, display changes in appetite or experience irritability as a reaction to emotional tension. Infants and toddlers can feel more secure during periods of familial stress when consistent routines and caregivers are maintained, environmental stimuli is limited, and extra comfort measures are provided when needed.
• Preschoolers are very egocentric and their wild imaginations often lead to misconceptions. When a parent is seriously ill, it is quite common for this age group to develop fears based on these misconceptions. Though they are beginning to understand illness at a primitive level, oftentimes preschoolers think that the illness was caused by something that they did. They tend to react to the new stress by regressing in developmental milestones, creating new fears, having sleep disturbances and changes in eating habits—or even displaying new behavioral problems like aggression. Maintaining consistency in routines is critical for these children. They need to be prepared for how their world will change in simple language and to be given ample time to adjust.  Adults can provide small pieces of information during frequent check-ins, allowing the child to gradually adjust without feeling overloaded.
• School-aged children begin to understand cause and effect and can understand more complex explanations of illness, even making associations with others that have had similar illnesses. They may think they can catch cancer. These children may exhibit a wide range of reactions including sadness, fear, anger, isolation, poor concentration or poor grades, anxiousness and jealousy. School-age children need to be given honest, updated and age-appropriate explanations, consistency in routines, and permission to enjoy themselves.
• Adolescents typically have a full understanding of illness, yet their views may be child-like at times. Although they may know about cancer, they still may have misconceptions based on their limited experiences. Some adolescents may want more detailed information and others may not. This age will often search for explanations and support via the internet, so media exposure should be monitored. Adolescents may also experiences a variety of reactions including anger, depression, withdrawal, rebellion or feel they have an increased sense of responsibility because of the illness. Adults should use caution when giving teens added responsibilities—roles that were once those of the ill parent—as these can cause added stress. Lines of communication between parents and teens should be open and honest in order to maintain trust. Teens should be given the reassurance that as things change with the cancer that they will be told.

Children and teens will experience the diagnosis of cancer in a parent in different ways.  Adults need to provide children and teens with honest communication about the illness, prepare them for what to expect and how their life will change, and validate their feelings in a developmentally appropriate manner using clear, concise language. Children benefit from safe outlets in which to cope and those outlets should be identified especially during times of stress.  These outlets can be found in the home with family, in school with teachers, staff or friends, or in the community with trained professionals. Most importantly, they need to know that they are cared for and will be cared for no matter the outcome.

About the author: Krista Burgbacher is the Youth Program Manager for Our Clubhouse, a non-profit organization in Pittsburgh that provides social and emotional support to anyone touched by cancer. She is trained as a certified child life specialist and has years of experience working with children, teens and families that have been impacted by illness and death.

Citations: Weaver, K.E., Rowland, J.H, Alfano, C.M, & McNeek, T.S. (2010) Parental cancer and the family: A population-based estimate of the number of US cancer survivors residing with their minor children. Cancer, 116(18). Retrieved from http://www.pediatrics.aapublications.org