Communication And Response

Communication And Response

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Clinical Management

How to talk to your child about cancer and treatment

 

 

When a child is diagnosed with cancer, parents often struggle to find the right way to discuss the condition. Years of experience have shown that withholding the truth from children can be more harmful than telling them the truth. Children need to know that their parents are trustworthy and will tell them the truth. Moreover, children's innocence makes them more sensitive to right and wrong. If they notice something is amiss or that the facts differ from what their parents have told them, they may feel isolated and misunderstood by family and friends. Furthermore, due to their rich imagination, children often imagine things to be worse than they actually are.

 

1. The benefits of telling your child the truth

 

You might wonder, "Why should I tell my child about cancer?" Parents often choose not to inform their children about things they fear or find 'scary' or 'bad,' out of concern for their child's safety. However, in a child's world, the fear is not so much about knowing something will happen, but about not knowing what will happen. In fact, there are many benefits to telling your child about cancer and its treatment:

 

 

You can build trust in your child and the health care providers.

Your child can know what's going to happen and what to expect.

Children often fill in the gaps with their imagination, and correct and complete information can help them correct misconceptions and negative thoughts about cancer and treatment.

If your child knows the meaning and importance of participating in treatment (such as taking medicine, going to the hospital for a follow-up visit, having a spinal tap), he or she will be more willing to cooperate.

Letting children know and understand their illness can make them more courageous. When facing the disease, they know that they can still control their own health and fight against the disease, so they will not panic in the unknown fear.

 

 

However, when parents discuss cancer and its treatment with their children, they should choose words appropriate for the child's age. You can also seek help from healthcare providers who are treating your child, asking them to assist in finding suitable ways to explain the disease, condition, and treatment to your child. If you can find coloring books, educational toys, and other educational materials, these can greatly aid your child's understanding of what is happening. Remember that children learn best through repeated experiences of doing, seeing, and hearing. Therefore, you may need to be patient and repeat explanations until your child's doubts and fears are alleviated. As your child grows older, they may want to know more about their condition and the treatments they are receiving.

 

 

2. Cancer myths: Science or myth?

 

In this information age, there are often many rumors about cancer, some of which even parents themselves blindly believe. When you and your child hear information related to cancer, be sure to help your child distinguish between the truth and the falsehood. If you are not sure whether the information is correct, be sure to ask medical professionals for confirmation.

 

        2.1 Is cancer someone's fault?

 

 

Children with cancer, or their siblings, or their parents may sometimes think that cancer is caused by what they did or said, or even by some bad idea. It's important to tell them that what they do, say, or think doesn't cause cancer.

 

        2.2 Is cancer contagious?

 

 

Cancer is not contagious. No one can "infect" you with cancer.

 

        2.3 Can cancer cause hair loss?

 

 

Many children think that cancer causes hair loss. In fact, it is the drugs and other treatments for cancer that cause hair loss. But remember to tell him (her) that hair usually grows back after treatment.

 

 

3. How to explain cancer to your child

 

Here are some tips to help you better discuss cancer with your child. Remember, the amount of information you share should be tailored to your child's age. Some hospitals, organizations, and non-profit groups have trained professionals, such as nurses, child life specialists, mental health professionals, and social workers, who can assist you in finding the right way to explain cancer to your child.

 

You need to discuss with your children what language makes them feel more comfortable when answering questions from their peers. Children's classmates and friends might ask about their condition. You can prepare answers by discussing with your child how they prefer to be addressed. Some children may not want to talk about their illness with classmates, while others might prefer to share it with friends. Understanding your child's preferred way of communication will help you better support them.

 

To help your child understand what cancer is, it's important to first explain some basic knowledge about the human body. Cells are the fundamental units that make up the human body. They are so tiny that they cannot be seen with the naked eye and can only be observed under a microscope. Every part of our body, including bones, blood, heart, and skin, is made up of these tiny cells. In a healthy body, many functions, such as enjoying the scenery, listening to music, and touching, are accomplished through the collaboration of these tiny cells. However, when these cells grow uncontrollably, they turn into cancer cells, which coexist with healthy cells in our body.

 

When discussing cancer with your child, you can start by asking them what they think caused their cancer. This way, you have the opportunity to correct any misconceptions they might have. When talking about cancer, avoid using terms like 'bad cells' and 'good cells.' This can make your child feel that they are not good or have done something wrong, leading to self-blame. Instead, use the terms 'diseased cells' and 'healthy cells.'  'Diseased cells' are not necessarily 'bad cells'; they are fragile and need care to become 'healthy cells.' We will provide some methods to help you explain different types of cancer to your child.

 

        3.1, leukemia

 

The bone marrow, located inside bones, is a specialized factory for producing blood. This factory produces three crucial types of blood cells: red blood cells, white blood cells, and platelets. Red blood cells help transport vital oxygen to the body. White blood cells are responsible for identifying and eliminating harmful invaders. Platelets help stop bleeding in injured individuals. Leukemia occurs when white blood cells malfunction, failing to identify and attack harmful invaders effectively. Sometimes, these cells mistakenly target other healthy cells, leading to damage.

 

        3.2, Lymphoma

 

        The immune system acts as the body's defense mechanism, tasked with identifying and eliminating unhealthy or foreign cells. Lymphocytes, which reside in the lymphatic tissue, are responsible for this task. However, when these cells become diseased, they may fail to protect the body effectively and might mistakenly attack healthy cells.

 

        3.3, Solid tumors

 

At the beginning, we need to explain to children what the normal function of the affected area is. For instance, when explaining a bone sarcoma in the leg, we should first explain that the leg supports our body, allowing us to move freely and go wherever we want, do whatever we wish. A solid tumor, on the other hand, is a mass formed by many diseased cells sticking together. These diseased cells grow and crowd out healthy cells, hindering their ability to perform their normal functions.

 

4. How to explain cancer treatment to your child

 

After explaining to children what cancer is, we can start discussing cancer treatment with them. Before this, you should confirm the specific treatment your child will undergo. Also, inform them that other children with different types of cancer may receive different treatments, or they might receive the same treatment but with varying intensity and frequency. Next, we will introduce the most common types of cancer treatment.

 

        4.1 Chemotherapy

 

Chemotherapy, commonly known as 'chemotherapy,' uses drugs to target and kill rapidly growing cells in the body. Cancer cells, lacking normal regulatory mechanisms, grow much faster than healthy cells. Chemotherapy exploits this mechanism to target and destroy cancer cells. However, some healthy cells in our bodies also grow at a similar rate to cancer cells, so chemotherapy can also damage these healthy cells to some extent. Nevertheless, healthy cells typically recover and return to normal after the treatment.

 

When chemotherapy damages healthy cells, children may experience side effects such as hair loss, stomach discomfort, vomiting, mouth ulcers, fever, fatigue, or infections. However, not all children will experience all these side effects, depending on the specific type of chemotherapy drugs used. Based on the child's treatment plan, healthcare providers will discuss potential side effects with you.

 

        4.2 Radiotherapy

 

Radiation therapy, commonly known as 'radiation,' uses high-energy rays that are invisible and intangible. The treatment equipment focuses these rays on the cancerous area to destroy cancer cells, thereby inhibiting their growth and spread. While radiation therapy may damage healthy cells near the cancer cells, these healthy cells can recover after treatment. When radiation therapy affects healthy cells, children may experience side effects such as hair loss, stomach discomfort, vomiting, mouth ulcers, fatigue, fever, or skin redness. However, not all children will experience all these side effects, which depend on the location of the cancer and the intensity of the radiation therapy. Based on the child's treatment plan, healthcare providers will discuss potential side effects with you.

 

        4.3 Surgical treatment

 

During the surgery, doctors will remove all or part of the cancerous tissue. In some cases, doctors may place a catheter in the child's body to facilitate more effective drug administration. Some children may need a nutritional tube (such as a gastric tube) during surgery to ensure they receive the necessary nutrients throughout their treatment. Your treatment team will inform you about the specific procedures your child will undergo. Special medications, such as anesthetics, will be used to help reduce the pain your child experiences during most surgeries.

 

How to help your child face cancer

 

After discussing cancer and treatment with your child, it's time to talk about how they can manage their emotional changes during this process. Your child might feel angry, guilty, sad, lonely, and scared due to cancer, but they can also feel happy. It's important to view their emotional changes with a calm mind, letting them know that these feelings are common. Knowing how to name these emotions is generally beneficial for children.

 

Be honest with your child about how you feel. Your child can sense your mood swings. Share your feelings and tell him (her) that it's normal to feel unhappy or angry.

 

        Cancer can cause you and your children to experience many changes and challenges. As a parent or guardian, you may be asking:

 

        • How much does my child know about cancer?

        • How will my child feel about cancer treatment?

        • How can I support and help my child in this process?

 

Children of different ages have varying understandings and reactions to cancer and its treatments. A child's personality, way of handling situations, the support they receive, the treatment plan, and their age or psychological maturity all influence how they cope with cancer. Let your child know that we accept all of their feelings, and sharing them can make them feel better. Encourage your child to express themselves in various ways, such as talking, writing diaries, drawing, or even engaging in intense activities like running or punching bags. Let your child know that it's okay to say 'I don't want to talk right now.'

 

When your child is under stress, their normal behavior patterns may change. They may become more dependent on adults and revert to childhood behaviors, a phenomenon known in psychology as 'regression,' which can lead to behaviors such as wetting the bed or being unreasonable. As a child, they are not yet equipped to cope with the emotional and psychological challenges brought on by cancer.

 

You are a vital part of your child's life and play a crucial role throughout the treatment process, as you understand what your child has been through and how they typically cope with stress. You can help healthcare providers gain a deeper understanding of your child. Together, you and the healthcare providers can explore new ways to help your child better manage cancer and its treatments.

 

Make it clear to the child that the medical team will take care of him (her), and you will continue to support him (her). Since the child may feel very vulnerable, when he (she) learns that you will always love him (her) throughout the process, he (she) might need or ask for more reassurance. Show the child that you are always there to support him (her).

 

The following sections will tell you about some of the typical responses children of different ages have to stress, and offer suggestions on how to help children of different ages cope with cancer.

 

1. Infants (from birth to 12 months)

 

        Infants rely on the help of their parents or guardians to meet their needs. They need adults to provide food, create a comfortable environment, play with them, and take care of them. Through direct experiences, such as smelling new scents, seeing new colors, and tasting new flavors, infants learn about the world around them. They tend to trust familiar people and things. Infants do not understand cancer or its effects, but they will react to new people and events in their lives, as well as changes in their surroundings.

 

 

 

 

2. Young children (ages 1 to 3) ​

        

Young children start to desire more independence, wanting to break free from adult control. During this period, they might say things like 'I'll do it 'or' No. 'As they grow rapidly, young children may need to complete tasks independently to gain a sense of' self-control. 'Since they haven't learned to express their feelings through words, they often show you through actions. They may not fully understand how the body works and might think that changes in their bodies are due to what they have done. They might have many misconceptions about why they get sick and imagine various scenarios that could happen after falling ill (for example, they might think, 'I'm sick because I didn't do well').

 

 

 

 

3. Preschool children (ages 3 to 5)

 

Preschool children feel proud when they can independently complete tasks. They often say, "I can do this." They learn more words to express their emotions and feelings, but they may often use games like "playing house" to express similar emotions. They might mistakenly think that hospitals and treatments are punishments for doing something wrong. They can easily misunderstand adults' words and make up reasons to explain what happens.

 

 

 

4. School-age children (6 to 12 years)

 

School-age children take pride in being able to complete tasks independently in most situations. They generally enjoy school life, which helps them learn and develop new skills. Their friends have an increasingly significant influence on them. At this stage, children begin to understand cause and effect and the concept of time. They learn more words to describe their bodies, thoughts, and feelings. School-age children also gain a better understanding of their bodies and start to learn more about physiology. However, they may still find many medical terms confusing.

 

 

 

5. Adolescents (ages 13 to 18)

 

Teenagers begin to realize they are independent individuals in the world. They strive to become more independent, no longer relying on adults around them. Due to their youthful mindset and behavior, peers become an increasingly important part of their lives. Teenagers desire to be accepted by their peers and care more about how they are perceived. Illness and treatment can make a child different from their peers, even if they try to look like everyone else. By this time, they understand cause and effect and can view problems from multiple perspectives.

 

 

 

 

How parents should deal with cancer

 

When a child is diagnosed with cancer, many changes take place in the lives of parents and families. Each family is different, so the way to deal with the crisis is different.

 

1. Deal with emotions

 

During a child's illness, many parents experience feelings of fear, anger, depression or guilt. These feelings are normal and common. Talking to friends and family, health care providers or other parents of children can be helpful. Sharing these feelings with others can help you better adapt to life changes.

 

        1.1 Fear

 

The initial diagnosis is often the most difficult. The fear of the unknown about cancer and what a child's cancer diagnosis means can be overwhelming for a while. The fear can also come from the child's first hospital admission, the stress of adapting to an unfamiliar hospital environment, which is also difficult.

 

You may be worried about cancer treatment, financial factors and how to help your child fight cancer. Talking about these fears can be helpful, and health care providers will listen and help you.

 

        1.2 Anger

 

Sometimes you might feel angry about what has happened. Some families lament the unfairness of fate; others cannot accept that doctors cannot explain their child's illness; you might also be angry at how your child's condition has completely disrupted your life. Feeling angry is a normal reaction, but venting anger through shouting, fighting, or other violent means does not solve the problem and is not the right approach. Finding a safe way to express your emotions can be helpful. For example, some parents find that walking and talking with friends helps; or talking to a psychologist or volunteer can also help ease their emotions.

 

        1.3 Self-blame

 

Some parents feel guilty for not being able to detect their child's illness early. Many parents suspect that their actions have contributed to their child's illness. The siblings might blame themselves for the child's health issues, believing that their own behaviors and thoughts are to blame for the child's cancer. For example, they might think, "When we fought last time, I wished he would die, and now he has cancer!" Everyone in the family should firmly believe that they are not responsible for the cancer and cannot prevent its occurrence.

 

        1.4 Depression

 

Depression typically involves a range of negative emotions and behaviors. Feeling sad and distressed is a normal response to a cancer diagnosis and treatment. Cancer can significantly impact daily family life and cause a profound sense of isolation. You might experience feelings of sadness, such as wanting to cry, a loss of appetite or overeating, a lack of interest in activities, lethargy, difficulty concentrating, an inability to cope with problems, and other physical symptoms like chest tightness or headaches.

 

With the support of family and friends, as well as doctors, most parents can adjust their emotions to focus on their children's treatment. Personal and family counseling can help parents find inner strength. Sometimes, parents may feel overwhelmed by personal emotions and struggle to concentrate on their children's treatment. If there are other pressures before the child is diagnosed, such as career, marital issues, emotional problems, or substance abuse, these can exacerbate the situation. Talking to healthcare providers you trust can be helpful; they can offer appropriate psychological support or medication.

 

As a parent and caregiver, you can easily overlook your own needs. Remember that in order to better care for your child, you must first take care of your own physical and emotional needs. Only by taking care of yourself can you be a healthy role model for your child.

 

2. Facing your child's illness

 

        Some advice on dealing with a child's illness includes:

 

        • Pay more attention to talking with loved ones or friends and family, and try to talk about topics other than your child's illness;

        • When talking about their illness in front of children, let them join in;

        • Reduce stress by taking a walk, reading or talking to friends. You will learn what works for you;

        • Try to take turns with a loved one or family member to care for the child in the hospital;

        • Parents need to face their children's treatment together, and sharing the responsibility can relieve the conflict caused by taking care of their children alone;

        • Accept help from relatives and friends. Ask them for ways to help you, such as buying necessities, cooking, cleaning or picking up your children from school;

        • Identify a relative or friend who is willing to communicate directly with you and inform other relatives and friends about your child's condition. This way you can avoid repeating the information to others. You can inform your friends about your child's condition through websites, blogs, microblogs or other online means;

        • Seek help from health care providers;

        • Communicate with other parents;

        • Join a caring support group;

        • Ask your doctor if counseling or medication is right for you.

 

3. The impact of the child's illness on the parents' marriage or relationship

 

Chronic diseases can quickly disrupt family life. Parents often feel exhausted trying to meet the needs of their children and family; financial pressure is also common. Many parents try to maintain a normal daily routine while working. Many couples find that their child's illness puts pressure on their relationship, such as not being able to spend time with each other or feeling angry or frustrated about the child's condition. The following three points may help prevent the breakdown of marriage or romantic relationships.

 

        3.1 Respect the other person's approach to the illness

 

Everyone handles stress differently. Some avoid the problem, some cry or get angry, and others find relief by researching the condition. Some use a busy work schedule to distract themselves from their child's illness. Others may become withdrawn, preferring to think alone, which can lead to misunderstandings and hurt feelings. Both partners should understand and respect each other's approaches to the child's illness and try to understand how they accept it.

 

        3.2 Keep in touch

 

 

The key to a successful marriage is communication. Under pressure, it's even more important to communicate and understand each other's emotions, fears, gratitude, and relevant information. Silence can lead to feelings of estrangement between partners. Sharing emotions and information can help partners maintain an intimate relationship and make better decisions.

 

        3.3 Accept change

 

 

The illness and treatment of a child can change the roles of family members, and the changing roles may place stress on the marriage or family. Temporary role changes may be necessary to support the child's treatment; some successful role changes may continue to become part of the family.

 

        3.4 Parents share the responsibility of caring for children

 

 

        Some suggestions on parents sharing responsibility for caring for children:

 

 

        • Joint understanding of cancer diagnosis and treatment;

        • Brothers and sisters who share care;

        • Communicate emotions with the other party;

        • Sympathize with the other party and avoid blaming or criticizing the other party;

        • Accept help from relatives, friends and neighbors.

 

 

4. Advice for separated or divorced parents

 

Separation or divorce is difficult for most families, and a child's cancer diagnosis can make the problem even worse. Focusing on the child is extremely important, and staying focused can alleviate problems that existed before the child was diagnosed, or problems caused by the child's cancer diagnosis.

 

The boundaries of the family and daily life can be affected when parents who are separated or divorced jointly care for their children. The step-parents need to give the biological parents time and space to make decisions about the child's treatment and care together. This often causes the step-parents difficulty in deciding whether to offer help. Once the child begins treatment, it is crucial to maintain flexibility in the parenting plan and support each other.

 

If you have a strained relationship with your ex-husband (wife), seeking help from a therapist or volunteer can be helpful for your mood. Additionally, children may need more support to cope with life changes, especially when the family has just experienced divorce or separation.

 

We should face each other together and try to avoid the pressure of separation or divorce affecting the treatment and care of children. The end of marriage or relationship does not mean that the obligation to take care of children ends. Good communication will promote the care of children.

 

The recommendations include:

 

        • When you and the other party are discussing your relationship and parenting plans, keep an eye on your child's needs;

        • Add a copy of the child custody visitation rights from the divorce decree to the child ' s medical record;

        • To avoid misunderstanding, invite the doctor to participate in the discussion of the treatment plan;

        • Ask the doctor to provide important information to both parents regularly, especially if one parent is unable to participate in discussions with the doctor. This ensures that both parents receive important information in a timely manner;

        • Request two copies of the educational materials from the medical staff to ensure that both parties have the same information;

        • Develop family communication plans to ensure that important health information is shared in a timely manner when children live in two families;

        • If you or your ex-wife/husband remarries, you should also teach the stepfather/stepmother how to take care of the children;

        • If you notice changes in your child or other children, or if there is a problem with communication with your ex-husband/wife, please consult a health care provider.

 

How to help siblings and grandparents cope with cancer

Siblings of children with cancer may experience different emotions and reactions. Often, they share the same needs as their sick sibling and may feel sad, afraid, and uncertain about the future. They may fear the word cancer and worry about death. Regardless of age, they may feel changes in family life.

 

While siblings may feel sad and worried, they might also experience feelings of resentment and anger. Parents and relatives often devote all their energy and time to caring for the sick sibling, while other family members show concern and affection for the child. Other children in the family, especially younger siblings, are more likely to feel jealous and cry. Sometimes, the siblings may also face their own issues, such as depression, insomnia, physical discomfort, or learning difficulties.

 

 

1. How can you help the child's siblings?

 

        The recommendations include:

 

 

        • Spend time with your other children and do activities that interest them;

        • Let them know that you still love them;

        • Explain to them the condition of the sick child, the treatment they are undergoing and the side effects. Decide what information to tell them according to their age. Make them believe that cancer is not contagious and that the child's cancer is not due to their reasons;

        • Take other children to the hospital to visit the sick child, so that they feel involved in caring for the sick child. This may reduce their fear and make them closer to the sick child;

        • If possible, ask a relative or friend to stay at home to care for the children's siblings instead of sending them to another family;

        • Let the children (s) help with some housework, so that they can feel that they are helpful to the family;

        • Communicate with your child's teacher, who can help and keep you informed of your child's performance at school, so that the teacher knows that your child needs to cope with additional stress;

        • Seek help from health care workers, psychologists and volunteers.

 

 

2. The impact on the child's grandparents

 

 

When grandparents learn that their (grand)children have cancer, they may react differently. Like you, they might be shocked and disbelief, feeling guilty for living so long. They might feel responsible, believing they passed cancer to their grandchildren. Grandparents may also feel sorrow and pity, not only for their grandchildren but also for their own children.

 

 

Grandparents can provide significant support to you and your family. If they are in good health and live in the same city as you, they can offer assistance at home or in the hospital. They can also care for, comfort, and show affection to your children's siblings. Additionally, grandparents can help inform other relatives and friends about your child's condition. Inviting them to participate in discussions with healthcare providers can help them better understand the treatment plan.

 

 

 

 

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How to discipline children

 

The family's daily life begins to be affected when the child is diagnosed. The child will receive more attention from family members and relatives, as well as more gifts. Even if the child feels unwell, the gifts and attention are still attractive, and they will get used to it and hope to be treated this way all the time.

 

When this special treatment ends, disciplining the child often becomes problematic. When a child is unwell, they tend to act more immaturely and become more dependent on their parents. The side effects of pain and treatments (such as steroids) can make any child more sensitive and irritable. These behavioral changes may make you find it harder to discipline your child.

 

Many parents often feel helpless and guilty when their children are suffering from illness. You might feel the need to give them special attention to compensate for the pain, which is a normal feeling. However, indulgence can sometimes lead to problems. Children need their parents to set rules, and being required to follow these rules can provide them with a sense of security. If parents indulge their children too much, the children may feel that their illness is more serious than they realize.

 

Here are some tips on disciplining your child:

 

        • Set clear, consistent and age-appropriate requirements and rules for children;

        • Adjust according to the child's situation. If the child is not feeling well, it is not necessary to say "please" and "thank you" every time;

        • Use other forms of punishment instead of corporal punishment to educate children. Try to leave the child alone or temporarily deprive him of some small power;

        • Praise your child's good behavior.

 

About the school

 

During the treatment period, the child should continue to study, grow, and interact with peers. Returning to school is a crucial part of helping the child return to a normal life, which can boost their confidence in themselves and the future. Consult healthcare professionals about the best time for the child to return to school. To help the child smoothly transition back to school life, healthcare professionals can also visit the child's school to introduce cancer and its treatments to the classmates. If the child's classmates have infectious diseases (such as chickenpox), the school should immediately inform the parents.

 

For many children, especially those who have undergone treatment for physical changes, returning to school can be difficult. Hair loss, weight gain or weight loss are common. If your child has problems with these issues, consult a healthcare provider. If your child is having trouble keeping up with school, ask the school for help.

 

If your child is unable to attend school, please communicate with the teacher and school. Healthcare providers will provide a detailed explanation of the child's diagnosis and treatment. Teachers will offer homework assistance and help the child stay connected with classmates. Additionally, you can seek academic support from a tutor.

 

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References

References:

1. Sunflower Family Handbook

       2. https://www.caresearch.com.au/QuoCCA/Portals/6/Documents/Palliative-Care-for-Children-with-Cancer.pdf

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