What is Straight Talk to Kids?
A program to help adults talk with children about cancer: about the program, why the service is provided, and its creators.
Before Beginning Your Discussion
What to think about before you talk to your child about cancer.
Why tell your child?
Reasons to tell your child the truth about your cancer.
An age-by-age guide to guide your conversation with your child.
What do I say?
How to tell your child that you or another family member has cancer; how to tackle the issues of what is happening now, your cancer treatment, and what may happen in the future.
What about my emotions?
How to show your emotions and explain your own feelings to your child.
What if they ask why and how I got cancer?
How to help your child deal with not knowing the cause of cancer.
How do I tell them I may not be as available?
Helping your children with the change in routine.
How do I talk about my appearance?
Explaining your physical changes from cancer treatment to your child.
How do I talk about other life changes?
Addressing the disruption in your work, daily routines, and schedules.
How do I know if my child is coping well?
An age-by-age guide to the feelings, behaviors, and changes you may observe in your child; when to seek professional help for your child to cope with cancer.
Who else do I tell about my illness?
The implications of telling friends, neighbors, teachers, and others in your community to help your child cope with your cancer.
Books and videos for parents on how to talk with your children about cancer; books about cancer for children.
What is Straight Talk to Kids?
A Program to Help You Talk to Your Child About Cancer
Straight Talk to Kids is a consultation program designed to assist parents, caregivers or other adult family members in talking to children who have a parent or significant family member diagnosed with cancer. The program's goal is to help adults discuss with children the impact of a serious illness on the family's daily life.
Why is this service offered?
Straight Talk to Kids provides a useful guide for adults to:
- Address how to talk with children about what is happening in the family
- Elicit how this affects the child's life
- Give children of any age a chance to ask questions and clear up misconceptions
- Help children cope with an illness that affects the whole family
What to tell and how to tell depends on the child's age and level of understanding.
Who is Straight Talk to Kids?
Straight Talk to Kids is coordinated by the Department of Social Work at NYU Hospitals Center and was developed with funding from the Kenworthy-Swift Foundation.
What to Consider Before You Talk to Your Child About Cancer
Explaining an illness to a child can be one of the hardest things a parent or caregiver can do. One seldom feels completely prepared or comfortable having this kind of discussion with children. In fact, most people feel inadequate and awkward. We hope that this information will provide you with guidance and the strategies to begin a dialogue that will strengthen the emotional bond with your children and provide them with the information they need in a way that is meaningful to them.
It has been written in many places that children seem to have a built in "something is wrong" detector. For example, infants are keenly aware when their daily routine has been disrupted or taken over by someone else. They can also detect anxiety in the person who is their primary caregiver, which can make them irritable and difficult to console. School age children know that something is amiss if they are suddenly picked up at school by someone else and sent to a friend's or relative's home. Adolescents, who tend to be rather aloof at this developmental stage, may begin to lose interest in things they once found enjoyable; such as being with friends, or extra curricular activities.
Talk to your children about what is happening as soon as you have a good understanding of the medical situation and are comfortable with the information yourself. If children are not told by a parent or loved one, they will undoubtedly hear about the illness from someone else; such as a playmate who may innocently say: "So, I hear your mommy/daddy has cancer." Often, these conversations provide your child with wrong or misleading information that may add to their anxiety.
Not talking to your children may also give them the message that it is not okay to talk about it at all. We all know that children have active imaginations, and they will use their imagination to answer any questions that they may feel they cannot ask. This may lead them to blame themselves for what has happened which is of course, not what any parent intends.
Children need to hear what is happening in the family from those who love them and from those they trust. Tell your children as soon as you are able since they are part of the family and part of the experience, and your illness affects them too.
Points to Think About
- Children tend to cope better when there are no surprises and are given all the information at their level of understanding. Be open and honest to ensure that they will maintain the trust you have worked so hard, and for so long, to establish. They will continue to come to you if they have questions or hear something different from what you yourself have told them.
- If possible, both parents should talk to the children. A decision should be made together when and how to explain the illness and what is expected to happen. If you are a single parent and are feeling too sick for the task then be selective in choosing someone to talk with your children. Ask someone who has a relationship with your children such as a relative or close friend and review with them what you want your child to be told. Try to be present at the time of the discussion so that everyone knows what has been said.
- If there are children at different maturity levels you will have to explain the same things in different ways so that each child can understand what you are saying at their own level. This means that your choice of words will be different when explaining the illness to a five year old verses a twelve year old. The younger children will pick up bits and pieces of the explanation you give to the older children and this will help them know that they have been included.
- Explanations to your children should be in simple terms at a level they will understand. Be careful not to overload them with information in the beginning. However, do not make it too simple or they not take it seriously. All of their questions should be answered, but if you cannot answer a question tell them that you will find out and get back to them with the information.
- Clarify that your children understand what you have told them by asking them to explain it back to you. This will give you an opportunity to clarify any misconceptions they may have.
- Some families find it helpful to write down what it is you want to tell your children before you have the discussion. This gives you an opportunity to share this information with loved ones if you get "stuck", and an opportunity to practice. It also gives you a chance to anticipate any questions they may have and prepare your answers and the particular words you want to use.
- To protect your children, you may not want to tell them when things like illness happen in the family. However, developmental specialist today feel that children should not be excluded from what is happening in the family, and that they will have a smoother adjustment to the changes that may take place if they are included. Children can handle the news and they will handle it in their own way given an opportunity to work through their feelings at the same time as everyone else.
- It is important for children to hear the same explanations of the illness from all of the significant people in their life; grandparents, babysitters, friends and teachers. These important people in the child's life should be kept well informed of what and how things have been discussed. Families have their own way of managing sensitive information within the family. There is no right or wrong way to handle these situations. It depends upon what you feel comfortable with doing and how much information you want to share with others.
- Children will be children, and they think the world revolves around them most of the time. This kind of thinking usually does not change when there are difficulties in the family such as an illness. Don't be surprised about a lack of complete understanding from them. Be patient and try not to make them feel guilty for wanting to go on with their normal routine. Routine is important to children because it makes them feel secure. Normal routine and play should be encouraged as much as possible.
- An effective way to get children to talk about their feelings is for a parent to express their own feelings. Children will take their cues from their parents. It is alright to express your own anger, sadness, and disappointment about the illness, and even to cry in front of your children. However, extreme expressions of these feelings or acting them out in front of your children can be scary to them.
- Reassuring children that their feelings are normal given the situation can be comforting to them.
- Keep children up to date on information that may change regarding the medical condition or treatment plan. Explore the children's reaction to these changes on a regular basis as their feelings will change as much as the situation at hand.
- Most importantly, do not make promises to your children that you cannot be sure to keep.
Why Tell Your Child About Your Cancer?
Should I tell my children that I have cancer? What if I decide not to?
Illness causes disruption in a family's life. There may be many doctor appointments to go to, hospital visits for testing or admissions, surgeries and recovery periods. There are many conversations going on between family members sometimes within earshot of the children who may be in the other room presumed to be watching television, playing, or doing homework (or at least you think they are) when they may actually be trying to over hear parts of the conversation. Plus they may not even understand what you are talking about which can lead to many misconceptions and increased anxiety on their part. Unless you are at your children's sides 24 hours a day, 7 days a week it is impossible to totally protect them from hearing something from somebody about the illness. It may also be necessary to ask other family members, neighbors and friends to help out in the children's care and to take on responsibilities that you may have otherwise done yourself. If this will be so, then the children deserve some explanation of why there is this change. If you make up a story or down play the seriousness of the situation you may risk damaging the trust you have worked so hard to build with your children over the years. You should tell your children something about what is happening. If you do not feel comfortable having this kind of discussion with them you can consult your physician who may be helpful in giving you ideas of how to approach the subject or you can ask to speak with a social worker or other mental health professional that is familiar with developmental issues and speaking with children. There are numerous books available in your local bookstore and library that address this subject. Children can be the joy of your life and they can be a great source of comfort and support to you regardless of their age, but they need to have information that they can understand about what is happening in the family.
How Old Should my Children be Before we Talk Cancer?
At what age do I start talk to my child about cancer?
There is no right or wrong time to talk to children at any age about serious illness. It is important to address this issue with children of all ages. Keep in mind the developmental differences and gauge your discussions around what the child can understand based on their age and what they need to know that directly affects them.
Age 3 and Under
Although you cannot have a dialogue with an infant, they are sensitive to changes in their routine and to who is physically taking care of them. It is important to try to keep infants in familiar surroundings as much as possible and try not to expose the baby to many different people.
Children under the age of two and a half years may understand simple terms like "hurt" or "boo-boo", but cannot understand complex concepts such as chemotherapy or radiation. They can sense a change in something but usually cannot verbalize it, and certainly cannot understand the impact of having a serious illness such as cancer. Try to spend as much time as the illness will permit with a child of this age. Also try to arrange a consistent person with whom the child is familiar to spend time doing what the child enjoys.
Age 3 to 5
Children from 3 to 5 years of age react mostly to their feelings rather than to facts, and feels that life revolves around them. It is important to explain and reinforce that they did not do anything to cause the illness of the loved one that may be sick.
When speaking with children in this age range it is helpful to be concrete and brief. Their attention span is limited, and you can always repeat the information at another time.
Children at this age have many questions about everything so make sure you include some time to answer their questions. They can be very sensitive to changes in people's moods so do not assume that you are hiding anything from them.
Children are also very physical at this age with their unrelenting amounts of energy. A good strategy is to encourage physical activity. It usually helps release a number of feelings.
Age 5 to 8
Children between the ages of 5 and 8 usually have heard the word cancer in school projects, and from their peers or from the television shows they watch. A good place to start is to ask them what they already know about cancer, and what they think it means.
It is important to give them factual information about the illness and as they are capable of understanding many of the body functions from their school studies. It is important to prepare explanations before speaking with children in this age range since their questions will be very exact and will include a lot of "why" questions.
Children at this age may be upset that the illness will disrupt their activities, but can be receptive to flexibility when given good reasons. They may have questions about who will take care of them in the absence of the ill parent or during treatment times, such as "Who will drive me to school? Who will pick me up? Who will make my lunch? Arrangements should be made with someone who the children are comfortable with who can temporarily take over these tasks.
Age 8 to 12
Children at this age are capable of understanding more complex concepts involving the illness and treatment course, and may have strong opinions about what is happening in the family. It is important to include them in decisions that directly affect them such as going to a friend's home to stay for a time or taking extra responsibility around the house.
The pre-teenage years are very complex and involve many changes for children. It is best to be straight forward with them in giving information about the illness. If they detect that you are protecting them too much they may rebel and this could jeopardize their trust. Ask them their opinions about things.
Remember, however, they are not yet adults and need reassurance and extra comfort during this difficult time in the family. They are capable of reaching out to their own support system but need to check back from time to time with those they are most familiar with, so be prepared to be there for them.
The teenage years are a time of many changes, both physically and emotionally for children. By the time children are in their teens, they probably understand just as well as adults what happens when someone has a serious illness such as cancer. Their cognitive skills are developed, and they can see illness as something universal. They are acutely aware of themselves as people, and may spend a lot of time philosophizing, criticizing, and questioning. They want to be treated like an adult and are striving for more independence from the family unit and moving more to relying upon their friends as their main support system.
With very young children, we have to spend a lot of time thinking about the words to use to help them understand important information we want them to know. With a teen this usually is not necessary. However, what is necessary is to be prepared to spend time with them as they try to make sense of what is happening. Be honest with your own ideas. Teens can understand abstract thinking so you can begin to share your personal philosophical and religious beliefs, including uncertainties and unknowns.
What do I say when I tell my child about cancer?
How do I tell my children that I or another family member has cancer?
What to tell your children about cancer depends upon their age. Also, families use certain terms and talk about things in particular ways. This is often referred to as the "family's language".
You usually know which words get through to your children and which do not. Do not use complicated terms. Keep your responses short and to the point. Lead into things gently and do not give them too much information or they may block out everything you are saying to them. It is important to recognize when to stop talking about the subject and to give the children some time to "let it all sink in".
If the children start to change the subject or become distracted from the conversation then it is time to take a break from the discussion and let them know that it will be continued at another time. You can also let them know that they can come to you with any questions they may have about what you already told them.
How to Explain Different Issues to Children
The following suggestions are not grouped into any particular age level as each child is different and each parent talks to their children differently. You may decide to use parts of one statement and parts of another to help you find your own comfort level and way of explaining something.
What is Happening Now
- "Mommy is sick. It's not like a cold or measles or like feeling bad for a few days - she is very sick. She will be sick a long time."
- "Daddy will have to stay in the hospital for a long time to get better. He doesn't want to be there, but he is so sick he can't be home right now."
- "There is something in Mommy's body that isn't supposed to be there. It can make Mommy very sick. It's not like when you fall or hurt your knee, or when you get a cold. It is something that makes your body get hurt on the inside."
- "Your father is very sick, but the doctors are almost sure they can make him better."
- "What I have told you is what I know and understand about what is wrong with your mother right now. I will tell you if things change."
- "I have to take medicine for a long time. When summer comes, I hope that things will be back to normal."
- "If you have any questions at all, please ask me. I don't want you to worry about this all by yourself. We need to talk about things."
- "I am sick. I have a sickness called cancer. I am going to have to stay in the hospital so the doctors can give me some medicine (treatment) to help me get well again. It takes a long time to get well when someone has this kind of sickness."
- "There is something inside my body called cancer. The doctors are giving me medicine (treatment) so that it will go away."
- "There are many types of cancers. They are all different. Some cancers are cured quickly and easily by treatment, others are not. Sometimes you die because you have cancer, sometimes you don't."
- "Uncle Joe had a very different kind of cancer than I have. With the kind of cancer he had, people don't usually get better. I have a different kind of cancer than Uncle Joe."
- "Sometimes you may hear scary things about cancer. There are different types of cancer. I'll tell you what I know about the kind of cancer your mother has."
- "You can't catch cancer. You can't get it from someone else."
- "Mommy is getting some medicine to help her get well. The medicine is called chemotherapy. It kills the cancer little by little."
- "Treatment is what makes you get better. It is also called chemotherapy."
- "Daddy can't take the medicine by drinking or eating it, so he has a tube (like a long straw) that goes into his body and the medicine goes in that way. It doesn't hurt Daddy."
- "Doctors know a lot about taking care of people when this happens."
- "You know the special camera that takes pictures of the inside of your body (your bones) at the hospital. It is called an x-ray. There is also a special kind of machine that helps the cancer go away, it is kind of like medicine. It is called radiation. The radiation goes into the body and kills the cancer cells. Mommy will have some purple marks on her skin to show where to point the machine so that the radiation will zap the cancer."
What May Happen in the Future
- "Your Mom is very sick. Right now the doctors feel she is doing well and there is no reason for us to think she won't get better. If there comes a time that it looks like you Mom isn't doing well, I will tell you. Right now through, no one is expecting that."
- "Some people do die of cancer, but a lot of people get better and live to be old."
- "The doctor thinks I will be fine. Lots of people who get the kind of cancer I have live for a long time, as long as anyone else. We will tell you if anything changes."
- "Right now, the doctors say that Dad is doing fine, the medicine is working and is making him better. If things change, and the medicine stops working, or it looks like he may die, I will tell you."
- "We will tell you if it looks like Mommy isn't going to get better."
- "Nobody is sure right now if they can make the cancer go away, we will need to hope (pray) very much that what they are trying to do will work."
- "It is okay to worry that your mother may not get better, everybody does. Try not to worry about it all of the time though. Your mother also wants you to carry on with your life."
- "You can play and be with your friends and do what you usually do. Your mother doesn't want you to be sad and sit around all day."
- "If Dad gets really sick and we are worried about him dying, we will tell you. *"
These statements are adapted from When a Parent is Sick: Helping Explain Serious Illness to Children,Joan Hamilton, RN. Halifax, Nova Scotia (1999).
What About My Emotions?
Should I show my feelings about my cancer to my children?
If you are comfortable with your feelings, chances are your children will feel the same with theirs. Children learn to mange their emotions from the loved ones who surround them. They often mirror your reactions to things going on around them. If you take a calm approach with your children chances are they will react in a calm way. However, talking about something as serious as cancer, treatment, or even possibly death can be an upsetting experience under any circumstance, let along having to explain it all to your children.
Your first task should be to take some time for yourself to process all of the information you have received from your health care team and talk it over with your spouse or other significant people in your life. This also means coming to terms with how you feel about the situation. Remember, your children are going to take their cues from you. You will experience an array of feelings about the illness: shock, anger, sadness, fear, anxiety and hope. If for any reason you are just not ready to discuss the situation with the children then ask someone who is close to them to help you. If this is not possible, then ask for help from the health care team who can even be present when you decide to speak with them.
Communicating your own feelings to your children can demonstrate that it is an okay thing for them to do as well. Children may not have the same emotional maturity with which to put names on what they are feeling. This comes with time and with guidance from you as their parent. Children tend to act out what they are feeling, usually though their play. It is important to share your own feelings with your children. They will experience many of the same emotions you are feeling about the illness. If you don't express your feelings, the children may begin to wonder if things are as serious as people are saying. People's coping styles usually do not change suddenly when a crisis occurs. If a child has been private with their thoughts and feelings in the past, don't expect them to suddenly be open and pour out their thoughts. However, allow them an opportunity to share their feelings when they are ready and do not push them. Prepare your children for periods of feeling confused about their emotions. It is a confusing time for everyone.
Although you should not hide your emotions when explaining what is going on, you should try to maintain a degree of composure so that the children do not feel upset or concerned about your own reaction to the information you are explaining to them. The children will not be able to focus on the information you are trying to explain to them if you are visibly having great difficulty with the information. If your children are having difficulty talking about their feelings then encourage their expression through music, art or physical activity.
Do not feel that you have failed when you cry in front of your child. The opposite is true. It expresses the undeniable fact that you too are human and need emotional release. It is better to say, "I have been crying, too" rather than, "there, there, you mustn't cry."
These statements are adapted from Talking about Death: A Dialogue Between Parent and Child. Earl A. Grollman. Boston: Beacon Press (1990).
Explaining Feelings About Cancer
- "Even if you don't think it does, sometimes your Mom being sick can affect all kinds of things. Some kids find it hard at school; some kids can't concentrate on anything. Some kids can't sleep, or don't feel hungry. Usually this is because they are worried and because everything is mixed up - their feelings and their life. If you are feeling any of this, let's talk to see if we can work at making things better."
- "Different people feel different things about what is happening. Try to let your feelings out in some way (by drawing, running, or writing), so they don't get all bottled up inside you."
- "You may feel things that you've never felt before."
- "Sharing your problems and worries with people who care about you can sometimes help."
- "Worrying about things can take up a lot of energy. Talking about them usually helps. You may want to talk with me, but sometimes you may want to talk with someone else. That is okay."
- "I am going to have bad days when I won't cope with things very well and you may have bad days too."
- "I want you to ask me any questions you have. I may get upset when I answer them - not upset with you, but because I am sad. It is important that we talk about them even if it hurts sometimes."
- "Sometimes you can't say or put into words what you are feeling. Don't worry, your Dad know how much you love him."
- "Some people may feel mad, some sad, and some may not know quite what they are feeling. Some don't want to talk about things; others may want to talk about it a lot. The important thing is that everybody in the family needs to remember that there is not right or wrong way to feel. We all have to be patient and understanding about how others are feeling and acting."
- "I am so sad that Daddy is sick that you will probably see me crying now and then. When you are thinking about Daddy and feeling sad, you may cry too. Maybe sometimes we will cry together. Maybe it will make us feel better."
- "Mommy being sick makes me sad and scared. It's okay if you feel that way too."
- "You can't catch cancer. You can't get it from someone else."
- "I will be spending time looking after your mother in the hospital, but I will also be at home sometimes to be with you. When I'm not going to be home _______ will come and stay with you."
- "Sometimes kids feel mad when a parent is sick. It changes a lot of things for a long time. It is normal to be mad at times."
- "Sometimes we may get mad at each other, but we all know that even through we do, we still always love each other."
- "It is normal to feel angry that this has happened. You can show your anger by…. You may not show your anger by….."
- "Don't feel bad if you aren't sad or thinking about your father all the time. He wouldn't want that. He still wants you to carry on with your normal life - and play and be with your friends."
- "It's okay to laugh and play and take your mind off your worries for a while."
- "I feel guilty sometimes because I feel mad that you father's cancer has changed everything. Then I remind myself that I'm not mad at your father, I am mad at the cancer. "
These statements are adapted from When a Parent is Sick: Helping Explain Serious Illness to Children,Joan Hamilton, RN. Halifax, Nova Scotia (1999).
What Do I Tell My Children About Cancer?
What if they ask why I developed cancer or how I developed cancer?
Children feel that the world revolves around them. Therefore, do not be surprised if they feel responsible for the illness on some level. They may feel that something they did caused it; their misbehavior, having said mean things, or not having done their homework. Sometimes they wonder if it was something the parent did or did not do.
A degree of guilt is involved in almost every illness, whether it is on the part of the parent or the child. Adults search for ways they could have done more. Children wonder if they were only better behaved or cleaned their rooms more the illness would never have happened. Children will search their brain for the "bad thing" they did to have caused the illness and will wonder if they can undo it to somehow restore the health of the love one.
Guilt can take many forms. It can be acted out through aggression and hostility. It can be turned inward causing depression. These feelings may cause the children undue anxiety that may interfere with being able to carry on with their regular activities such as school, play and may cause sleep disturbances.
What Causes Cancer
There are many theories about what may cause cancer. Some theories have been substantiated by research. However, for the most part, despite advanced medical technology and research there is no definite reason why any one person gets cancer and others do not. This "not knowing" can be difficult for both the parents and children to accept. The anxiety this may cause may also be difficult to tolerate. However, it is important to let children know that nothing they said, did, or thought had anything to do with causing the illness.
What You Might Say
- "Nobody really knows why I got sick. It just happened. I didn't want to get sick and nobody made me get sick."
- "It is not something you can catch from me. I can't give my illness to anyone."
- "You have nothing to do with your mother's getting sick. Nothing you said, did or thought made her sick."
- "We don't know why your father got sick. Nobody can answer that. It's one of those questions that can't be answered."
- "One of the hardest things we have to learn and accept is that some questions do not have answers."
- "Daddy is not sick because you were bad."
These statements are adapted from When a Parent is Sick: Helping Explain Serious Illness to Children,Joan Hamilton, RN. Halifax, Nova Scotia (1999).
Being There for Your Children
How do I explain to my children that I may not be as available to them as before, maybe even for a long time?
Many aspects of cancer, including doctor's visits, treatment, and side effects can significantly impact your normal level of functioning. You may find that you are not able to pick your child up from school or are unable to attend their basketball match because you are too tired from treatments.
Helping Your Children With the Change in Routine
These changes can be experienced as significant disruptions and losses to your children - regardless of their age. Children usually are not able to articulate anxiety and vulnerability directly. To help them make these transitions:
- Tell them of your interest and desire to continue to do things as much as you can and that not participating in the usual routines is difficult and sad for you.
- Do not over promise. Try to be realistic about your energy levels and capability so that you can be there when you say you can.
- Try and schedule things with them at the time when you are most likely to have the most energy - this may be at certain times of day or during the days that you are furthest from receiving treatment.
- If you know the parameters of your treatment - how long you are supposed to have them and for how many months - tell them. If they are old enough to understand this time frame, it can give them the scope and length of your unavailability.
- If you know that you are going into the hospital, or have an appointment, tell them so they can be aware of your absence and you all can make preparations for your absence and your return.
- If you cannot do the promised activity, tell them in age appropriate language why, for example it is okay to say "I can't read to you our good-night book tonight because I am feeling really tired, but your Mom will read to you instead," or if you are up to it; "I will be in the room to listen to the story so that I can know what is going on too."
Talking About Your Appearance
How do I talk about my physical changes, like losing my hair?
Most children are not as concerned by the physical changes that adults are most sensitive to. The recommended approach when helping kids adjust to changes such as hair loss is to give them the opportunity to explore their curiosity about the changes. Answer all questions directly and in terms that they understand.
Most children are concerned about their own welfare, and may ask questions like, "Will I lose my own hair?" Answer whatever questions they have directly and clearly. Acknowledge that it is a temporary situation and that your hair will grow back. If they want to try on your wig, let them.
If you are sad about the loss of your hair or body part it is important to be honest about these feelings. It is a normal reaction to feel grief about the losses a cancer diagnosis brings to a person and her/his family. It is a positive thing to model for the child that feeling sad about loss is appropriate and part of how one takes care of one's self.
Answer your children's questions directly and in a way that emphasizes that even though you look different, you are still the same person who cares about them.
Things You Can Say
- "It may be awhile before your mother is like she used to be because she may be tired for a while."
- "The medicine I am taking is very strong. It helps me to get better but it also makes my hair fall out (or makes me feel really tired)."
- "I know that I look kind of different on the outside, but on the inside I'm the same and I love you very much. Maybe you could put a picture of me by your bed so that you can remember what I looked like before I started treatment."
- "Sometimes the treatment (chemotherapy) can make your father tired and lose his appetite."
- "Dad's hair may fall out but it will grow back after he finished getting the medicine."
- "I want to do the things we used to do, but I am just too tired right now. Let's think of other fun things we can do together with you sitting on the bed with me. "
Explaining Other Life Changes that Result from Cancer
For most people, a cancer diagnosis represents a complete disruption to their life that necessitates many changes. Any change to your life can cause major disruption to your child's and can also affect a child's routines and schedules. For example, cancer treatments can be so intense that often people cannot work for a period of time.
This change can be an opportunity to be more available to participate in your child's life. If there are ways in which the treatments for cancer affect your child's life, explain these changes in language they can understand.
What You Might Say
- "I am not going to be working for a while because the medicine I am taking to make me feel better can make be feel really tired. You will need to clarify with the children that the medicine they take when they are sick will not affect them the same way the chemotherapy affects you."
- "I will be home more because of the medicine I am taking."
- "I'll be able to pick you up from school each day because I am staying home for a while."
How Your Children Cope With Your Cancer
How do I know if my child is coping well with my cancer?
Children with parents who have cancer are considered to cope well if they are able to participate without reservations in their own lives, games and friendships. There is no uniform way for a child to react to a cancer diagnosis of a parent or close adult, but there are recognizable signs related to developmental stages that can point to a child's difficulty in coping.
If Your Child is 2–5- Running, jumping, yelling to get attention; regression to thumb-sucking or diapers; intermittent sadness, fears and concerns; anger at the sick parent; attachment to a surrogate parent; and repeated questions are some of the behaviors you may observe.
If Your Child is 5–8 - Understanding the difference between simple and serious illness; understanding treatment; some familiarity with cancer; concerns about the here and now; questions about the how and why of cancer; a desire to understand what went wrong with the body; and self blame are some of the feelings and behaviors you might observe.
If Your Child is 8–12 - Focusing on the cancer as a disruption; mixed feelings about independence and added responsibility; desire for specific information about prognosis and treatment; questioning medical professionals' ability; fear for their own health; anger, grief, and sadness; and hiding feelings from peers are some of the things you might notice.
If Your Child is 13–18 - A general understanding of the cancer and the significance of a serious illness; struggle to set out on their own but stay close; intermittent withdrawal; worry about the future; concern for the cancer patient's pain and suffering; reluctance to open up; and anger at the family or self are some of the things you may experience.
What You Should Do
Give children of all age groups extra love and attention whenever you can. It can also be helpful to make sure there is someone in your family and community of friends who can spend extra time with him or her. Try to be patient with them if they seem selfish—they do not know yet how to look at things any other way.
Talk to your children right away to determine the source of their anxiety and/or anger. What you assume is causing their anxiety may not actually be the source of their concern. Clarify your feelings about your diagnosis and about your feelings for them. Help them to feel safe, and provide as much consistency in their lives as is possible. Acknowledge the disruptions and their difficulties, and help them name and normalize their feelings.
Figure out who can be of help in the community, at school, among friends and among the adults who surround you. Talking with your child's teachers to tell them what is going on can be helpful so they have a better understanding of your child's emotional state. They can be supportive and relay information to you as a result.
When to Seek Professional Help
Remember that "bad" behavior does not necessarily mean that your child is not coping well. This could be age-appropriate behavior. However, consult a mental health provider if your child is:
- exhibiting signs of or verbalizing suicidal thoughts or actions
- exhibiting self-destructive behavior such as drug and alcohol use
- exhibiting violent behavior
If Your Child is 2–5
- Parents are the main focus
- They think very simply
- Primary concern with separation from caregivers
- Has good sense of present but has a harder time with the concept of what "might" happen in the future
- Play is important. It is a means of communication and an outlet for emotions
- At this stage the child is usually "self centered"
- The child has a harder time with "facts" and has an easier time understanding feelings
How They Cope
- Typically at this stage children react to and are aware of the changes in their lives but usually do not understand the reasons why or the impact of illness and treatment.
- They focus on discomfort/anxiety at being separated from their caregivers through changes in the parent's behavior or availability.
- They have difficulty in expressing feelings and will express themselves through actions (physically, running, jumping, yelling) to get attention that they may lack and to show that they are healthy.
- They can regress to previous behaviors (thumb sucking or need for diapers).
- Their play is not disrupted (but does not mean they are not affected by the illness) and will return to it after explanations of the situation are given.
- Sadness, fears and concerns come and go.
- May be angry with the sick parent for abandoning them or all family members for the changes in their routine.
- May develop attachment to a surrogate parent.
- They may be inquisitive about the sick parent; ask where she/he is, why they haven't returned, what they are doing.
- They may ask the same questions repeatedly.
What You Can Do
- Be as consistent and loving to your children as possible.
- Provide them with another well-known adult as a caretaker at this time.
- Try not to disrupt their routine but if you have to, then enlist known adult to help minimize the unfamiliar for you child.
- Try to be patient with them and understand that they express anxiety through actions: tears, tantrums, and disrupted sleep patterns.
If Your Child is 5–8
- Parents are the main focus and they are dependent on them for most things.
- They are concerned about their own safety and the safety of the family.
- They are focused on family and their routines.
- They are interested in bodily functions.
- They are learning to follow rules.
- Being like their friends is growing in importance.
- They use pretend a lot in their play.
- They can participate in activities outside of the family.
- Begins logical thinking.
- They have a clearer understanding of time (past, present and the future).
- They can be self-centered.
- They want to complete tasks on their own.
- They are more aware of right and wrong.
How They Cope
- They can usually understand the difference between simple and serious illness.
- They understand that treatment can help you get better.
- Has usually heard the word cancer at school or on television and therefore equates it with death, or with older people. May not be able to differentiate the parent's fate from his/her own (what happens to the parent will happen to them).
- There may be concerns about what will happen here and now - not necessarily in the next couple of weeks.
- They will express feelings about what is happening to them and to the family.
- May ask questions about the "how and why" of the disease.
- Wants to understand what went wrong in the body - separate from the concern they would have for the person who is sick.
- There may be self-blame: they may believe that the parent/person is sick because they did something bad.
- Illness is defined by how it impacts his/her life - disruption of normal routines, activities, etc.
- Has some understanding of sickness and illness as a chronic or life threatening condition.
What You Can Do
At this stage of development, give the child a lot of opportunity to talk and time to just "be" with you. It is important to present all the information about the adult with cancer to these children in a clear way.
Children should be reassured that they will be cared for and who will care for them if it is not the primary caregiver. It is normal for children in these ages to feel angry or to sometimes wish it were a different adult who was sick.
Children at this stage are "self-centered" and may express frustration when their world is changed or not focused on them. They will release tension in play and physical activity because they may have a difficult time articulating their feelings with words; play and drawing can help.
If Your Child is 8–12
- They are starting to move outside the family to develop relationships.
- They are beginning to shift their focus from the family to friends.
- Ask "how" questions, searching for understanding and answers, how things work.
- They are absorbing new knowledge as fast as possible.
- Want to accomplish tasks at school, play, and in the home.
- Aware of right and wrong.
- Understands what is socially acceptable.
- Knows he/she is part of the future.
- Beginning to think more abstractly.
- Thinks logically - thinking based on facts most of the time.
How They Cope
At this stage children tend to manage independently with normal activities better than younger children because they are less dependent upon parents. However, emotionally they child is struggling to be grown up and to feel his/her independence and therefore might try to cover up feelings.
- May focus on the parent's illness as a disruption to his/her own life rather than show concern for parent/adult.
- They are happy about having more independence, but unhappy about having added responsibility.
- Wants specific information about prognosis and treatment plan.
- May question physicians, nurses and hospital's ability to care for the parent.
- Afraid of their own health.
- Concerned about rituals and traditions.
- Talks about feelings not only in terms of him/herself but also how others feel.
- Shares grief and sadness with others.
- May blame themselves for illness.
- Commonly see anger before sadness
- Commonly hide feelings from peers.
What You Can Do
For this stage of development, encourage involvement with friends and life outside of the family. You may need to assure them that they are healthy and be mindful that if you share your own fears, you could normalize theirs. An important element of this is to know when to stop, and check in with them that you are not overloading them with too much information. They may not be able to say what they are feeling and instead exhibit negative behaviors. Try not to punish them and rather talk about what is going on. If your child lashes out at you, it is usually because they feel safe with you and are unable to let it out in other protected forums. The child may need some help in figuring what to tell his/her friends about the illness. This could be an opportunity to walk them through feelings, to minimize surprises.
If Your Child is 13–18
At this stage children tend to develop and expand relationships outside of the family unit.
- They are much more independent from the family and their friends are extremely important.
- They are self conscious about their body image.
- They are usually self-centered.
- They can be moody.
- They will be experimenting with many things and experiences to test their limits.
- They are able to think abstractly and logically.
- They still need parents for advice, support and sometimes companionship.
- They still need a home base, roots, intimacy and love of parents/family.
- They are trying to establish autonomy.
- Privacy is very important to them.
How They Cope
- They have a general understanding of what is going on medically.
- They understand the significance of a serious illness.
- They struggle to set out on their own, but yet stay close to the sick parent.
- They can be very close at times and then withdraws completely to be with their friends.
- They worry about the parent's future.
- They have an understanding about how others feel.
- They are concerned about discomfort, pain, and the suffering of the sick parent.
- They may be afraid to tell too much and let their feelings show.
- They are worried that opening up or releasing feelings would cause them to completely break down.
- May look for the meaning and value of the parent being sick.
- Their anger may be directed toward the family or self.
What You Can Do
It is important to understand that this age group is conflicted about spending time with friends instead of family. At this time, they are expanding their relationships and their identity outside the family may be very invested in activities outside of the home. If they appear aloof, try to involve them in decision-making and activities, but encourage them to be with their friends and in their social world.
Who to Tell About Your Cancer
Who else besides my family do I tell about my cancer? How will it help my child if I tell them?
It is important to tell the significant adults who are in the child's life. Some adults are reluctant to tell "the world" (friends, neighbors, teachers, and others in the community) because they do not want their privacy violated. For some people, telling members of the community can increase a sense of vulnerability and loss of control.
Each individual family member has her/his own approach to managing sensitive information. There is no right or wrong way to do it. However, it can be important to think strategically about whom your child (ren) will be in communication with and to tell them facts of your diagnosis. Often people with a cancer diagnosis find themselves in the position of being the "educator" which can be burdensome and annoying. In this instance, it is important to think about whom your children would be speaking with and make sure that those individuals are relating the same information that you are. This way your children will feel that they are in the "loop" and that the stories are consistent in all parts of their world.
What You Might Say to Help Your Child
- "It may be good to tell _______ (your good friend) what is going on with Dad so that she knows what is happening. That way she will understand why things are a little different and why you may be acting a bit different sometimes."
- "Your grandmother being sick is not a secret by you may not want to tell everyone. But if you tell your close friends then they will know what is going on with you and all of us, and that could be a little less confusing."
- "Sometimes kids make fun of things they don't understand or say things because they feel uneasy. Although it can be hard, if you explained to them one at a time what is going on it could help them to understand and they would probably stop being weird around you."
- "Some kids and friends may act differently towards you. This is usually because they feel uncomfortable and don't know what to say or do."
- "Sometimes your friends might be afraid to upset you if they ask questions of talk to you about Dad. It is important to let them know what you are comfortable or uncomfortable talking about."
Books and Videos for Parents Who Want to Help Their Children Cope With Cancer
The Alpha Institute Staff & Ryder, B. G. The Alpha Book on Cancer and Living: For Patients, Family, and Friends. Alameda, CA: The Alpha Institute, 1996. Has an excellent chapter "For Family and Friends," including a section on helping children cope and other valuable chapters on self-care and coping.
Bernstein, J. Books to Help Children Cope with Separation and Loss. NY: R.R. Bowker, 1989. An expensive (over $50) but valuable bibliographic guide to books for children ages 3 - 16. Tells how to use books to help children cope, describes over 600 books, and provides a reading list for adults.
Doka, K. Living With Life Threatening Illness. NY: Lexington Books, 1993. Has a chapter on facing life-threatening illness as a family.
Grollman, E. A. Talking About Death: A Dialogue Between Parent and Child. Boston, MA: Beacon Press, 1990.
Hamilton, Joan When a Parent is Sick: Helping Parents Explain Serious Illness to Children. Nova Scotia, Canada. 1999
Harpham, W. S. After Cancer: a Guide to Your New Life. NY: W.W. Norton and Co., 1994. Includes a chapter on dealing with your children.
Harpham, W. S. When a Parent Has Cancer: A Guide to Caring for Your Children. NY: Harper Collins, 1997. Includes a special book for children, Becky and the Worry Cup. Written by a physician and mother of three who was diagnosed with lymphoma. A very thorough and helpful book.