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Children change over time – the way they feel, the way they relate to other people, and the way they think. Children go through these changes at different rates – but there are similarities within age ranges. These guidelines can give you some idea about how children might understand cancer – and what happens during treatment and how to talk with your child in a way that fits his or her current abilities.
Cancer and its treatment can interfere with normal developmental processes for children and teenagers. For example, you may see your child, who used to love going to friends’ houses and other activities, want to stay at home with you or ask you not to leave the hospital room. You may also notice that you want to stay closer to your child than before he or she was diagnosed or feel more worried about being apart. This is a normal response to a threat you are all experiencing – cancer. While these changes are usually temporary, they represent healthy emotional bonds between children and parents. External threats, like cancer, often bring parents and children closer together. Once through the hardest times, you can expect your child’s behavior will go back to close to what it was before she or he got sick.
This table lists feelings as children of different ages experience them. The second column highlights the characteristics of social relationships, the third is about how children of different ages think and the fourth suggest for how parents can support their child growth and development while the child is fighting cancer.
How do they understand and deal with feelings?
What is important in relationships with others?
How do they think about and understand cancer and the world around them?
What can you do to support their treatment and their development?
Engages in make-believe play, which may reflect some of the things they are going through (such as visits to doctor)
Younger children have difficulty distinguishing between reality and fantasy
Learning words to express emotions but may need help labeling different emotions
Often afraid of bodily harm and pain, may be anxious and distressed during medical procedures
Afraid of being alone in scary places (like the hospital)
Starts to show a independence from parents
Plays cooperatively with other children, rather than just side-by-side
Learns to take turns and share
Appreciates being close to parent(s) and other well-known adults for comfort in new, unknown, or scary places
Often has only 1 person who really calms them down
Asks lots of questions
Can understand simple explanations
Has trouble with multi-step directions or elaborate explanations
Obeys rules to avoid punishment; May believe that he/she was “bad” and that is why he/she is sick
Knowledge of cancer is limited
Knowledge of death is limited – does not understand that death is permanent or not reversible
Has some understanding of time – mostly in terms of routine rather than hours/minutes and months
Is unlikely to understand why treatments often make you feel bad to get you better
Physical comfort and soothing is important.
Let your child know that he or she didn’t do anything wrong to get sick.
Use simple words, books, pictures, or objects to explain what will happen to your child.
To prepare your child for a procedure or task, you may tell them when in their routine it will occur (after this TV show is over, after you wake up in the morning)
Provide limited choices you can allow:
Do you want water or juice? Be careful not to offer a choice that your child does not have, especially with medical care (kids almost never say yes, they want that medicine).
Be a “secure base” for your child. Have a trusted adult (you, your spouse, other family member) stay with your child as much as possible.
Make a consistent routine, if possible.
Encourage your child to play and engage in normal activities when possible, and offer comfort, distraction with toys and fun activities. Be soothing when your child has to have medical procedures.
To help deal with fears of being hurt or of the unknown, encourage play with safe medical supplies and play to express feelings.
Keep your usual expectations and limits in place. You can still have your child put their cup in the sink or expect him or her to share toys with siblings when they visit in the hospital.
Common fears include monsters and the dark in early years, replaced by school and social performance/rejection in later years
Developing a better vocabulary to describe emotions
Attached to primary caregivers when placed in challenging situations
While some may withdraw if depressed or unhappy, others may resort to aggression, lying, or teasing. Depression and withdrawal are more likely in children who are sick.
Friendships become increasingly important but attachment to parents is still strong
School is an important part of socialization and learning
The transition from elementary to middle school is often difficult for kids, given that there are several changes at once (changing schools, puberty). This may be hard for kids who are out of school due to illness – they may feel left out and behind in terms of making friends and being a part of the school community.
Competence in athletics is important to many kids. Illness may interfere, causing kids to feel left out.
Has knowledge from TV and other life experiences (such as grandparents and other family members) that cancer is a serious, scary disease
Knowledge of death developing; younger children usually understand that it is permanent, but lucky people escape it or that young people and their families don’t usually die. Older children usually understand that death is permanent and happens to everyone at some point.
Starting to understand the link between actions and consequences
Has a better understanding of time
Attention span gets longer as children get older, but kids may still have trouble understanding multi-step directions and explanations
Usually thinks in concrete, literal terms and has trouble thinking abstractly
It may be helpful, especially if another family member has died from cancer, to explain that cancer is a word to describe many different diseases. You can use simple explanations about your child’s specific disease and let them know that many childhood cancers are very treatable. Pictures, books, and games might be useful. Encourage questions and help your child get answers from doctors or nurses if you cannot answer a question.
Encourage your child to interact with friends, do schoolwork, go to school, play with their siblings and go to team sports events (even if just to watch) when feeling up to it
Provide simple explanations about treatments – what will happen and when.
Encourage play with safe medical supplies (to help deal with fear of bodily harm and fear of unknown) and play to express feelings and/or for diversion.
Put up a calendar on the wall that marks the phases of treatment (or just the days in the current phase) marking things to celebrate. (i.e. day 5-ice cream to celebrate that chemo is over, day 7 comic books to read after biopsy…. Or use stickers at the end of each day of chemo, and other stickers to note radiation days etc.
Keep your usual expectations and limits in place. You can still expect your child to do some chores at home or finish homework while in the hospital. This conveys a positive message of keeping your child on track for when he or she is done with treatment.
Usually have a good vocabulary for emotions
Confide more in peers and less with parents
May try to protect parents by not sharing their own emotions
May form close relationships with staff or may respect staff advice over parents’ advice
Being accepted by, and involved with peers is particularly important
Likely to be concerned about changes in body and physical appearance, and how these may affect acceptance by peers
May have or seek serious relationship with significant other. Maintaining the relationships may be a primary focus and may have concerns about appearance and sexuality.
Likely to focus on how cancer will interfere with daily activities, such as school, sports, spending time with friends
May want to be involved in making treatment decisions (link to 10-point rating system piece)
They have developed abstract reasoning and are able to think more deeply about the impact of cancer on self now and in the future
While they have developed thinking, they do not have a long track record of handling complex issues—so it is important for parents to remain highly involved in decision-making and following treatment recommendations
Teens usually understand that death is permanent and happens to everyone eventually. They likely had imagined what their life would be like before being diagnosed, and may struggle with how cancer may interfere with their goals and dreams. Teens have likely developed ideas about death and may be particularly worried about leaving their mark on the world before they die.
Be honest with your teen about treatment and possible side effects when they ask.
Encourage your teen to interact with friends (email, phone, text, etc.) and his/her significant other when he/she has the energy.
Encourage your teen to complete his/her school work.
Help your teen’s friends and significant other to feel comfortable visiting home and hospital.
Encourage your teen to talk with you or a trusted friend or healthcare professional regarding feelings about cancer and body. If your teen doesn’t usually talk with you or others about these types of things, encourage him or her to express their feelings through writing, art, or music. Websites for teens with cancer may also help.
Give your teen privacy to the extent that you can – ask doctors and nurses to do the same.
Focus on the most important things—like medication adherence—and allow your teen to be in charge of other things that just don’t matter as much (the kind of music they listen to, time with friends, etc.)
Be open to talking with your teen about life and death. Correct any misperceptions your teen may have. If your child is worried about their legacy, work with your child to develop a plan for leaving their mark.
Keep your usual expectations and limits in place. You can still expect your teen to do some chores at home or finish homework while in the hospital. This conveys a positive message of keeping your teen on track for when he or she is done with treatment.
Sometimes parents worry about being “over protective.” While it’s important to encourage your child to continue to do his or her normal activities (school, homework, friends, sports, etc.), it’s also OK to be more involved in their daily activities than you would be if they weren’t sick. Sometimes it can be hard to tell if you should be doing something for your child or teen, or if they should do it themselves. You may even fight with your teen about what he or she is allowed to do. If you are not sure if you are doing things for your teen that he or she is capable of doing or if your teen is allowed to do certain things (like go to school or friends’ houses), talk with someone from your child’s medical team to figure out what things you can allow your teen to do.