Communicating with children about illness, diagnosis, treatment, and support

The world infants function in is mostly based on their immediate sensory experience:

• Touch, how physical contact feels to them and their body
• Smells, both familiar and unfamiliar
• Taste, familiar and unfamiliar
• Sounds, including volume, frequency and familiarity
• Sight, what and who they see in their immediate surroundings

The sensory based world of an infant can be affected by mom's illness in all of these areas.

Touch and physical contact with mom may change following treatment or surgery and the familiar way an infant was fed, at the breast or close to the chest may change due to a mastectomy, lumpectomy, pain or skin irritation. To offset this change in touch, all caregivers need to offer extra physical contact to the infant in a variety of different ways. moms can snuggle infants higher up on the chest, closer to mom's neck and face, which is a nice way to give an infant skin to skin contact while avoiding the breast area. Infant massage and positive touch is another alternative, offering physical closeness and contact without holding the infant near the mother's torso and surgical sites.

Mommy may smell different following surgery, treatment or after a trip to the hospital. Similarly the other parent and caregivers may smell different after spending time in the hospital with mom, and infants will be able to smell this difference. Some infants may respond to mom or other caregivers by pushing away initially or fussing. This is normal and will most likely happen until the infant can smell the distinct smell of the individual under the new unfamiliar smell of the hospital. Don't take this personally. Just be patient and give the infant some time to figure out that it is indeed you.

Switching an infant from breast milk to formula after a breast cancer diagnosis is a common occurrence. The taste of the formula and the nipple may take the infant some time to get used to. An infant may refuse the formula and nipple at first. Be patient and ensure that the same type of formula and nipple is used consistently. The infant will eventually assimilate to the new tastes.

New sounds that an infant may hear in the hospital while Mom is an inpatient or outpatient will be unfamiliar to them, and can cause a variety of different reactions. Some infants will enjoy the constant hum of activity, machines, and people at the hospital, while others may be upset by the noise. For some infants, the noise of the hospital will lull them to sleep, and for other infants they may be more difficult to settle and have some difficulty falling asleep at the hospital. Both of these responses are very normal. Over time, the sounds of the hospital will become more familiar.

Infants will be introduced to many new people over the course of their Mother's diagnosis, treatment and recovery. They will also visit unfamiliar places such as hospitals, doctor's offices and other caregiver's homes. Seeing all these new people and places can be overwhelming and upsetting for young infants. Try to stick to a small number of consistent caregivers and places the infant visits. This will help maintain a familiar routine that is comforting to infants. If you must bring your infant to all your appointments, be ready with lots of positive support and extra loving interactions. Bring along a few familiar items from home to ease the infant's transition into a new place.

Infants are not old enough to understand illness and the impact of the illness and treatment on their mother's life, but they are able to understand the effect it will have on their life. An infant's main concern is disruption in their daily routine and changes to relationships with primary caregivers, which can be quite disturbing for them. Try to keep the daily routine as consistent as possible and reduce the number of additional caregivers.

Infants will let you know if they are feeling affected by mom's illness with changes in their eating or sleeping habits, or by acting extra fussy or clingy. These are all likely signs that they are feeling insecure or confused about what is happening in their world now. What infants need most at this time is comfort, positive physical contact, and a good daily routine. Give extra physical contact and do not be worried about spoiling them at this early age.

Very similar to infants, toddlers are unable to understand explanations about mommy's illness and how mommy's illness will affect mommy. Toddlers are only concerned with how mommy's illness, treatment and recovery will affect their life. Toddlers are totally focused on themselves, and live in the present - here and now; so they are unable to understand time concepts beyond major daily routines such as meal times or sleep times.

When talking to your toddler about mommy's cancer, use repetition and the simplest language possible:

"Mommy is sick" "Mommy has a boo boo here/is sick here (point to breast (s)" "Mommy is going to the doctor".

Whenever possible, model gentle touches to your toddler to demonstrate how they should appropriately touch and interact with mommy so that surgical and/or treatment sites are not injured by a well meaning rough hug from your toddler. You can model gentle touch by gently stroking your toddler on their hand, shoulder or chest and say "gentle" aloud while you do this. Then take your toddler's hand in yours and stroke your own body gently with their hand and say "gentle" aloud. Toddlers enjoy mimicking and will love to go back and forth taking turns doing gentle touch.

Separation from a caregiver can be especially upsetting because toddlers do not clearly grasp that someone will return if they have left for a short while. They can understand the concept "all gone" but not that someone or something will be back soon. Toddlers may ask repeatedly "where's mommy?" so it is important to give them the information that mommy is at the hospital or doctor's or laying down right now, every time they ask. This distress can be offset by providing lots of affection, ensuring consistent caregivers, and a predictable calm routine.

Again, similar to infants, toddlers may react to these new changes in mom and disruptions to the daily routine with different eating and sleeping habits, or by acting fussy and clingy. In addition to these changes, toddlers may also experience some regression, which means that they may be unable or unwilling to do things that they previously were able to do. Some examples are bedwetting and using a bottle again instead of a cup. This is a normal response that indicates that they are feeling insecure about their world. What toddlers need most at this time is comfort, familiar people and places, and a good routine. Accept this need to regress. It is a toddler's way of returning to an age of safety and familiarity. It will be temporary, so scolding and punishment will not be effective in making this behaviour stop.

Toddlers can sometimes be upset when mommy's appearance changes and it may take some time before a toddler feels comfortable if mommy looks different. This may mean that a toddler will not go to mom, or cries when they see mom. Try not to take this personally. A toddler needs to see mom acting like "mom" despite the difference in appearance before they are comfortable enough to go to her.

A preschooler's world has now opened up to include not just them but also their parents and immediate family members. They still cannot understand complex explanations but do have a limited understanding of time, in the most basic forms such as, yesterday, today, and tomorrow. A preschooler is beginning to form ideas and connections about how the body works, and has a limited understanding of the concept of illness. Most preschoolers understand being sick as having a cold, flu or something contagious like chicken pox.

When explaining mommy's cancer to a preschooler, use simple language, use your normal speaking voice (please no whispering; it implies secrets), be brief and allow for play breaks:

"Mommy is sick. It is not like a cold." "The sickness is called cancer." "The doctors are helping Mommy to get better." "The doctors are giving Mommy special medicine."

Preschool age children are visual learners and when giving them simple explanations about mommy's cancer, it is helpful to use a doll or puppets to help demonstrate what is happening to mommy's body (lump and surgery) and what will happen over the course of treatment (scars, healing and medicine through a PICC line, port or I.V). Having the preschooler place a band aid on the treatment area will help them concretely understand that this is the area where mommy is sick, and the doctors are working hard to fix it. Remember to keep these explanations simple and short; do not go beyond the child's attention span or developmental level of understanding. Many preschoolers need to "digest" small amounts of information at a time, with play in-between discussions, since play is a natural way that children work through and process new information. When your child seems distracted, that is a signal to stop the discussion and continue it at a later time.

Preschool children react to feelings more than facts, so know that your preschooler is watching and reading your body language for signs about how to react to news that mommy is sick. This can mean that if someone in the family is crying, they too will cry. Different feelings and emotions are still new to a preschooler and can be hard for them to control. A preschooler may show intermittent sadness, fear, anger, and happiness all in short succession. This is normal as they are reacting to the changes in their routine, their frequent separations from mommy, or from both parents as the hospital appointments increase, and additional caregivers and the shift of attention of friends and family from them to mommy.

Encouraging physical activity is a good way to encourage the release of feelings, and offering expressive arts activities, such as drawing, painting, and music also helps preschoolers express emotions.

School age children are starting to explore the world around them more, but are still mainly focused on their parents, their immediate family and the familiar routines in their family. At this age, children still remain very dependent on their parents and are now more concerned with their safety and the safety of their family as they are starting to think logically and can differentiate between simple and serious illnesses.

When disclosing mom's illness to a school age child, present clear information about what is happening:

"Mommy has cancer", "Cancer is a disease, which is different from a cold", "Nothing you did caused this to happen", "You cannot catch the cancer from mommy", "No matter how many appointments mommy will have, you will be taken care of by...(parent/family member/caregiver)."

When explaining what will be happening to mommy during treatment use words like:

"The doctors will make an opening to take the cancer out", "Mommy will have a special bandage where the doctors made the opening", and "Mommy will receive medicine through a special tube that goes into her body."

If mom is comfortable showing the child her port, I.V., PICC line, or Hickman line, it is important to explain that it is there to get the medicine into mommy's body to help make the sickness go away. School age children are fascinated by how the body works, and by equipment and machines, so whenever possible explain what the different parts of treatment do and the effect they may have on mom. When visiting the hospital, take the time to explain what each piece of machinery does, or ask the medical team to assist you in explaining this to your child.

Give a school age child plenty of opportunities to talk about mom's illness, share their feelings about it, and to ask questions. Some school age children just want to "be together" and try to avoid forcing discussions about mom's illness on them. Check in regularly and ask them how they are feeling or if they have any questions. It is good to regularly explore the child's understanding of what is happening by asking them to tell you about it.

Great importance is placed on being the "same" as their friends and peer group. This means that they may try hard to appear the same as usual in public, choosing to only show their concerns and emotions privately, and may want to continue as normal with outside activities. School age children may seem most concerned with how mom's illness will impact them – a different caregiver may be picking them up from school or sports now, they worry whether they will they be able to continue attending a sport or extracurricular activity now or will it not be possible at this time, and they may also worry about their friends questions and reactions to mom's illness and how to respond to them. Practice scripted responses to common questions or comments peers may have about mom's cancer. This helps them gain confidence and can reduce feelings of embarrassment.

This older school age group tends to share many of the same communication needs as the earlier school age group, but developmentally, older school age children are starting to move outside and away from the family to develop more peer relationships.

When giving information about mom's illness try to be specific and clear about the diagnosis and treatment. Give enough information in the form of facts to allow the child to think logically about what is happening to mom. Most older school age children are aware of cancer, and that there are different types of cancer, but still lack full understanding of the symptoms related to cancer and the disease process. They may have questions about the medical team's ability to care for their mom, so allowing them a chance to ask questions openly is important.

At this developmental stage, older school age children shift their focus from family to friends, so the impact of mom's illness is considered in light of how it affects the child socially. This sometimes presents as "How mom's illness has disrupted my life," instead of concern for mom. This is a normal part of development, so be patient and understanding. At this age and developmental stage a child may seem selfish about how mom's illness is affecting them, but this is how they look at the world as a whole.

On the other hand, some older school age children can take on overly grown up roles and responsibilities and may try to take on a "care-giving" role with mom and the rest of the family. Allow them to assist with mom's care through appropriate tasks such as bringing mom extra pillows or blankets, or helping prepare a snack for mom. Giving extra tasks or asking for help with certain jobs around the house is fine, but make sure to avoid overloading them by keeping their tasks focused on those that apply to them directly; like making their own lunches or keeping their room clean. Encourage these children to continue seeing friends, and to be actively involved in sports and peer group activities.

With older school age children, as they explore feelings and how their feelings impact others, their immediate feelings are commonly kept private. This is because they are learning how feelings are communicated outwardly to others, and are now able to recognize how others feel. Due to this learning process, anger can be an easy "go to" emotion, before sadness or worry can be appropriately articulated. Feelings like anger may be directed at family members as they may feel safest exposing uncomfortable or intimate feelings to family. By sharing your own concerns, fears and feelings about mom's illness, you can assist these children in helping them sort out their mixed emotions. This in turn will normalize the range of feelings they may be experiencing.

Teens are entering the stage of development when they naturally start to move away from the family, and spend more and more time with their friends. Spending time with friends can include actual time spent hanging out together, or talking to them on the phone, or possibly writing/talking through a different medium, such as instant messaging, texting, or through online social networking sites and games. Becoming more independent and shifting their focus from family to friends is a normal part of development during the teen years, and some teens embrace this and are strong advocates for their independence and the importance of making time for their peers, while others venture into this stage a bit more slowly as they gain confidence in their ability to be more independent.

The responses of teenage children to mom's breast cancer can be widely varied. Teens are aware of the seriousness of cancer, so most will experience some anger, fear, a sense of unfairness, and/or insecurity. Some teens will share their sadness and worry with you, while others may choose to share it only with a friend or other relative. For some teens, this news may be overwhelming, and they may choose to deal with it by ignoring it, focusing on their everyday activities, and/or keeping their feelings to themselves. Being angry, argumentative and distant are common responses, and are often difficult to deal with for parents. It is important to avoid being punitive, and instead meet this defiance with firmness and understanding. Teens do care, even if their actions and words do not always reflect that.

For some teenagers, it may be difficult to concentrate on everyday tasks and work, so if a teen's school work is deteriorating, make the school aware of what is happening and ensure extra help and appropriate supports are in place.

The presence of cancer and the changes it brings impacts a teen's natural movement to spend more time with peers, and away from the family. Some teens may struggle with the push-pull feeling of wanting to be with friends, but needing to be at home with family while mom's undergoing treatment. Regardless of the response, acknowledge that mom's being sick is difficult for everyone to deal with, and offer to answer questions and be supportive.

Give information honestly and regularly, but avoid forcing too much information on them all at once, or providing information that they are not yet ready to handle. This means "checking in" with teens regularly to see if they have questions, concerns or need any information. Making age-appropriate booklets or pamphlets available in the home is a non-threatening way to allow teens to read about what is happening, on their own and at their own pace. Ensure that other relatives and important adults (teachers, coaches) in a teen's life are aware of what is happening and can also offer support and information if needed.

Sharing your feelings, being optimistic, and being frank about your treatment plan and how it will impact your life and theirs is a good way to model appropriate expression of thoughts and feelings related to cancer. Assess whether your teen(s) has any concerns or is uncomfortable with possible changes to your physical appearance. Many teens are conscious about image, and aspects of your treatment and therapies may embarrass them, especially in the presence of their friends. This may include hair loss or going without a prosthesis following your mastectomy. Discuss this with your teen and decide on what is acceptable to both of you when in the presence of their friends or out in public.