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Helping Children Understand Cancer and Treatment

200285795-001A diagnosis of head and neck cancer affects the whole family. As a parent, it’s natural to want to protect your children from fear and anxiety. It can also be very difficult to switch roles and allow yourself to be cared for. The urge to shield children and keep secrets in this situation is normal.

But children, even very young ones, are perceptive. The slightest changes in daily routines or dynamics in the household can alarm children and have emotional repercussions. In fact, parents tend to greatly underestimate the effect a cancer diagnosis has on their children.1WelchAS,Wadsworth ME,Compas BE.Adjustment of children and adolescents to parentalcancer.Parents' and children's perspectives. Cancer. 1996 Apr 1;77(7):1409-1418.

While the majority of children will suffer no long-term emotional or behavioral problems as a result of a parent’s diagnosis and treatment, they are at a higher risk for these sorts of issues than children with healthy parents.2 Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review.Psycho-Oncology.2007;16(2):101-126. About one-quarter of children with a very ill parent will experience anxiety and problems sleeping, concentrating and completing tasks at school.3 Moore CW, Rauch PK. Addressing the needs of children when a parent has cancer. In: Holland JC, editor.Psycho-Oncology.Oxford; Oxford University Press; 2010;2:527-531. Your child’s gender, age and personality all have an influence on how he or she will cope, as do the severity of your illness and the makeup of your family.4 Thastum M, Watson M, Kienbacher C, et al. Prevalence and predictors of emotional and behavioural functioning of children where a parent has cancer: a multinational study.Cancer.2009;115(17):4030-4039.

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There are ways to help your children through this difficult time. Kids who are told about a parent’s cancer diagnosis and who feel comfortable communicating about the illness with their families are generally better able to cope with the associated anxiety. Children who are not told tend to struggle more with the changes and emotions.5 Rosenheim E,Reicher R. Informing children about a parent's terminal illness. J Child Psychol Psychiatry.1985 Nov;26(6):995-998. Therefore, adopting an attitude of openness and honesty is the first step to helping your family adjust and move forward together.

Preparing to talk to your children

Before telling your children about your cancer, take some time to prepare.

  • Wait until you have processed the information yourself and feel strong enough to talk about it with your children. Telling your children will never be easy. While it’s important not to wait too long, you will need to have the strength to inform and guide them in a constructive way. Sometimes it’s difficult to think, let alone speak, clearly immediately after being diagnosed. It’s normal to become emotional during this conversation, but it’s important to convey a sense of hope and togetherness along with any sadness and fear.
  • Decide on a comfortable and safe environment to have the conversation and plan to be available afterwards.
  • Come up with a rough outline of how you are going to introduce the topic and rehearse it a few times in your head. It may be helpful to run some ideas about how best to explain your situation past a partner, counselor, doctor, spiritual adviser or friend. Speak from your heart and be honest, but try to stay positive. Remember that your children will appreciate your honesty and openness and that they will take their cue from your demeanor and attitude to a great degree.

Age and maturity considerations

Tailor the information you give your children to their age and maturity. All children are different, so you’ll have to use your best judgment and your knowledge of your child’s personality and temperament to decide how best to talk to your child and help him or her cope with what is happening.

  • Very young kids probably won’t understand the details, but it may help to remind them that cancer is not contagious and that your illness is not their fault. You may also wish to direct your little ones to our head and neck website directed toward children. Just like you probably wanted to know as much as you could learn about your condition, your children may want to find out more about what’s happening to you as well. Our site for children is a safe place for them to seek answers to their questions.
  • Adolescents and teens might want a lot more information and be more likely to seek out answers for themselves. Listen to what they are asking and try to limit your answers to the information they have requested so as not to overwhelm them. Older children are also more likely to respond emotionally than younger children, as they will have a firmer grasp on the severity of what you’re telling them. As hard as it may be for you to see them hurting, trust that this difficult conversation will result in a more open and strong family unit as you move forward.

Ongoing communication

It is important to keep communicating with your children throughout your cancer journey.

  • With all children, it’s important to let them know that their feelings are valid and their input is important.
  • Be available to your kids and let them know you are there for them. The cancer journey will be difficult for you as an individual, but good communication with your children will keep your family strong. They, in turn, will help keep you strong.
  • Regularly ask your children if they have questions and try to gauge how much or little they would like to know about your progress through treatment. Try to tell them in advance of any changes in the daily routine. It’s also important to discuss any new side effects that you may experience as a result of treatment.
  • Don’t be afraid to ask your children for help. Being involved in your treatment and recovery might help them to overcome feelings of denial or fear. Every child is different, but having responsibilities can help many kids to feel empowered. Let them help with changes in daily routines if they would like to, but try not to place too much extra pressure on them.
  • Consider informing their teachers or guidance counselors of your family situation. It’s important that teachers are aware so that they can alert you of any concerns they may have regarding your child’s emotional well-being.
  • Consider professional counseling. Counselors will help children develop coping tools and provide them with a safe, unbiased environment to talk about their feelings in this challenging time.
  • Encourage your children to continue with their activities and social lives as much as possible. A regular schedule, physical and creative outlets, and good friends will help them to cope with changes at home.

Finally, know that you will have your own emotions and difficulties dealing with your diagnosis and treatment, and the way you communicate with your children won’t always be perfect. That is normal. It is important to distinguish between your needs and your child’s—you’re the one fighting cancer, but it does affect the whole family. When your own emotions are running out of control, take care of your own needs first. Do the best you can, and your family will understand.

Know your children. Knowing what your kids can handle, how they can handle it, when you can tell them—it’s not easy.Barry W. / Ronnie W. (palatomaxillary and low grade adenocarcinoma of minor salivary gland cancer survivor)

More about helping children understand cancer and treatment

These pages can help you prepare to talk about each stage of your diagnosis and treatment with children of various ages.

Dealing with Diagnosis

You will need to explain a great deal to help your children understand what is going on and what to expect in the coming weeks and months. This section helps you prepare for this discussion with your children.

Dealing with Treatment

Setting children’s expectations about each step of your treatment, side effects and after-care can help them cope with changes. This section will help you explain treatment to kids of all ages.

Dealing with Death and Dying

Dealing with death and dying is one of the most difficult emotional challenges for the children of cancer patients. This page offers advice to help children cope with their fear of your death and the process of dying.

FAQs for Children

This page is a collection of questions children frequently ask about head and neck cancer and the answers presented in terms most children can understand.

Resources

A variety of books and websites can help you and your children navigate their emotional journey through your head and neck cancer.


References

1 WelchAS,Wadsworth ME,Compas BE.Adjustment of children and adolescents to parentalcancer.Parents' and children's perspectives. Cancer. 1996 Apr 1;77(7):1409-1418.

2 Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review.Psycho-Oncology.2007;16(2):101-126.

3 Moore CW, Rauch PK. Addressing the needs of children when a parent has cancer. In: Holland JC, editor.Psycho-Oncology.Oxford; Oxford University Press; 2010;2:527-531.

4 Thastum M, Watson M, Kienbacher C, et al. Prevalence and predictors of emotional and behavioural functioning of children where a parent has cancer: a multinational study.Cancer.2009;115(17):4030-4039.

5 Rosenheim E,Reicher R. Informing children about a parent's terminal illness. J Child Psychol Psychiatry.1985 Nov;26(6):995-998.