The COOL Club – Children Offering Others Love

A third of women diagnosed with breast cancer have school aged children. Breast cancer is fast becoming more of a chronic illness than a rapidly fatal disease, but because of this, many women are exposed to many years of medical care that can affect their children.

Are you a member?

It is time that we set up a club for children who have been exposed to breast cancer by close relatives such as moms or aunt? We need to inform, encourage and promote sensible advice, as well as allow these children to interact with one another.

Why tell the kids?

Incorrect assumptions about breast cancer are often made if children are not well informed. Isolation from medical exposure can result in unnecassary projected fears that can impact on children for many years to come. There is no shield from stress, therefore discussing problems can promote an environment that can deal with stressful situations, or circumstances and allow communication options for the child to discuss how mom’s treatment may impact his or her daily life. The absence of open lines of communication, and not listening to a child’s perception (be it true or false), can result in children being forgotten victims of this disease.

You can’t keep cancer a secret! 

Careful exposure to information and treatment plans allows for mom’s diagnosis and management program to become part of planning the family schedules. This may be in terms of how treatment may affect fetching and carrying from school, as well as life at home.

Not knowing allows them to create imaginary scenarios which can be scary. Kids are quick to pick up on secrets and half stories, which can result in fiction and not fact. Fear and uncertainty have a damaging effect on their behaviour, their school work and their friendships. Parents are the best source for information and there is no rule as to when to tell them. Understanding your child will guide you in to what to say.

Children know when something is upsetting a parent and they are sensitive to what is happening. 
How to tell the kids

I like to meet the children of the moms that I treat. Meeting her doctor makes the prospect of what mom is going through real and less frightening. It is important to use the right words, both when speaking to moms and children. Words are unfortunately not like bruises that heal, but can cause permanent harm. I cringe when I hear young doctors talk to their patients and they say things like “this is not a disaster.” In my mind a disaster implies a major world changing event like a tsunami, or tornado or earthquake! The scale of perspective is important when talking to patients and their kids.

Finding the right caregiver to help explain the situation and early involvement of an onco-psychologist is important. Children will react differently depending on their age, temperament and relationship with their parents. Be warned, they will react to the news! Expect tantrums, sulking, tears, and a whole array of behaviours. After all, mom and dad are also reacting to the news. If you are concerned about your child’s ability to cope, get a therapist involved as soon as possible.

Don’t avoid difficult questions  

• “Will you die ?” I often explain to teenagers about the stressors of learning to drive for parents and the worry of youngsters on the road. The risk to young people in the 18-23 age group is far higher than that of their mother going through treatment.

• Inform your child’s school, and ask for their involvement.

• Any significant behavioural changes that persist for more than a few weeks may be warning signs. This may suggest intervention from a child psychologist.

• Some children require additional attention to adjust. Modifying information according to the child’s age, development stage and personality is critical.

Children aged 2-7 

Use concrete terms. I like to explain with analogies from movies and toys. Barbie and Disney have never let me down for a array of stories about the “goodies and baddies”. Explain that the illness is not their fault and try not to frighten, or overload them with information. Tiny bits of information is easier to assimilate as opposed to reams of detail. Storybook analogies often help explain the disease. Young children do not like a change in their routine, so try and maintain their daily routines as far as possible. If their routine has to be changed it should be perceived as a fun adventure. For example: “You are going to stay with aunty Louise who is going to spoil you and take you for ice cream!”

They need to know details about changes well in advance. Allow them to visit if you are in hospital for a few days. Young moms in wards are placed in private areas with special allowance for children to visit them.

Children in the under five age groups are primary narcissists, life is generally about them, so ensure that their world is intact and this will translate to a healthier psychological long term benefit.

Children aged 7-12

Ask for input from chidren and again analogies are useful. Harry Potter, Star Wars and being up to date with kids movies makes for good conversation examples. Understand what their interests are. Find out what they understand about the terms and correct any misunderstandings.

Tell their teachers and identify a specific teacher that your child is close to. Ask them to keep an eye on how they are doing and to pick up on recent behaviour or playground changes. Allow kids to participate in the changing routines.

Adolescents

This is the age where they are finding themselves. Hormones, peer pressure, changes in the body and self perception all play a role in their behaviour, making these youngsters potentially very self absorbed. It is imporant to explain to young girls that are still developing breasts that the same thing is not likely to happen to them. These girls might be anxious about getting the disease, so teach them how to examine and check their breasts for lumps. Explaining that breast buds, fibroadenomas and the small lumps they feel are not reason for concern and sometimes adding the security of an ultrasound is important.

The details about medical information is critical, as most of these youngsters have access to the Internet. Participate and help them with Internet searches and direct them to safe sites. Try to limit their responsibilities, as resentment about adding extra duties onto their plates is a complaint I often hear. Busy bodies and minds allows for less time for mischief,  so encourage school activities, sport and other individual activities so as to avoid potential idle hands. Be aware that their emotions are running high and can rollercoaster from one extreme to another.

Conclusions

• Taking care of the emotional needs of your children are an integral part of a woman’s care.

• Clinicians diagnosing breast cancer should routinely ask about the family and discuss if any assistance is required.

• Treating clinicians should routinely ask about children’s adjustments and facilitate referrals, information and support.

• Family meetings should be considered an important part of multidisciplinary care.

• The needs of children at differing developmental stages, including practical information, should be available.

• You need to identify those children who are most vulnerable to adverse psychosocial outcomes and target preventive intervention.

• Children are less anxious when they know what is happening.

• Women whose psychological needs are met, do better clincally.

MEET THE EXPERT

Prof Carol-Ann Benn heads up breast cancer centres at Helen Joseph Hospital and Netcare Milpark Hospital. She lectures at Wits University and, in 2002, established the Breast Health Foundation.

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