The household stays on a different schedule and doesn't seem to return to normal.

Everyone (parents, relatives, friends, teachers, etc.) focuses attention on the child with cancer.
As a result, parents spend less time with other children in the home.

Siblings may see their parents in a new and disturbing very sad, frightened, and confused.

Brothers and sisters often believe that they will also get cancer.

As the illness progresses, parents hope things at home will get better. However, the behavior of the siblings may not improve. They may do things to shift attention back to themselves, express their feelings, or start acting like they did when they were younger. These changes can take parents by surprise.

Some common reactions of children when a sibling has a serious illness such as cancer:

• Acting younger. Brothers and sisters may act younger than usual. Most children, especially those between 3 and 6 years old, won't talk about their feelings but they will show their feelings in their actions. You can expect to see changes in their behavior. Children who were potty trained may wet their pants again. They might become more active and jump around more than usual. They may be uncooperative and less obedient.
  
• Problem behaviors. Not all changes in behavior come as a result of a sibling being treated for cancer. Still, you may find increased fighting, yelling, or staying away from other family members and friends. These problems may occur outside the home, such as at school or church. Children may break things, or they may abandon former activities, sports, or hobbies; come home late; or refuse to help with chores. These attitudes may be more likely when the sick child is staying in the hospital.
  
• Emotions. New and confusing emotions may arise. Old feelings, such as jealousy or anger, can also show up more strongly or more often because the siblings are getting less attention than before, their normal routines are disrupted, and many of their usual ties to family and friends are changed. Resentment is common. Parents and other adults focus more attention on the sick sister or brother. For example, brothers and sisters find that classmates, playmates, and teachers always ask how the sick child is getting along, but don't ask how the sibling is doing. It's only natural for them to feel left out and resentful. Another reaction is sadness. Brothers and sisters may feel sad or depressed and may withdraw from family, friends, or favorite activities.
  
• Complaints of Illness. They may complain more about physical illness, but you may have trouble finding evidence that something's really wrong. If you take a temperature or look for a red sore throat or runny nose, you may not see an actual sign of illness-the child just says he or she doesn't "feel well." He or she may not want to go to school that day, or may not want you to leave to go to the hospital or a clinic appointment. Examples of common complaints are headaches, stomach aches, disrupted sleep, or a lack of appetite. If these were common before, there may be an increase in complaints or in their severity. Illness complaints are one way for a child to ask for attention.
  
• Self-blame. Siblings sometimes blame themselves for the problem of cancer and then feel guilty. Children often blame themselves for family problems such as divorce and separations, and it's true for illnesses as well. Brothers or sisters might think that something they did caused the cancer. They may also feel guilty about bad feelings they have about their sister or brother with cancer.
  
• New fears. Your children may develop a new fear, thinking that they are also going to get cancer. Actually, this happens rarely. Reassure them but remind them to tell you about any new problems, such as trouble sleeping or headaches or not feeling well, so you can help them when they need you.
  
• Trying to act "grown up." Sometimes children who see their parents under a lot of stress will try to be "grown up" so their parents don't have to worry about them. If this goes on for a long time, they may miss important parts of their childhoods.
  
  You will be better able to deal with these problems if you understand and appreciate why your children behave as they do.

Your goals are to:

• seek information and support with problems with your other children
• know when to seek professional help
• to be prepared to cope with behavioral problems, emotional upheaval, and physical complaints

When To Get Professional Help

If the brother or sister has any of the following symptoms or behavior problems, you should get help from a professional experienced in helping children and families under stress.

• The brother or sister's behavior changes markedly, including become self-destructive. Children who are depressed often show it rather than talk about it. Self-destructive behavior is one way to say, "I'm so sad and depressed that I don't care." Hurting themselves by doing very dangerous things, or getting into serious trouble at school, or even staying in bed all day and forgetting all their responsibilities can be signs that they are giving up.
  
• The brother or sister begins to harm someone else. Sometimes children learn ways of seeking attention or distracting themselves that may hurt others. An example is becoming hostile or aggressive toward the sibling with cancer, or taking out their feelings on the family pet. Since someone (or the pet) is at risk for being hurt, seeking help is very important.
  
• The brother or sister becomes very destructive. Although a few tantrums can be expected when children are feeling confused or frightened, extreme acts of destruction, such as continued breaking of items, or any incidence of fire setting, should be a signal to seek professional help.
  
• Severe physical problems develop, such as nausea, vomiting, or fever. Physical problems should be treated by a physician at once.
  
• The brother or sister asks for professional help. If your child wants to "talk to someone just for me," or says, "I can't stand this anymore," or "when do I get to have special attention," he or she may need in individual help. Talking privately with your child may be the first step in finding out that they would benefit from some brief professional help.
  
• The brother or sister talks about suicide or wanting to die. Thinking about suicide is always a serious problem that needs a professional opinion. Psychologists, social workers, and child life specialists are trained to identify serious depression and suicide risk in children.

When you have tried everything you can, including suggestions in this Homecare plan and strategies that have worked in the past, and you still feel helpless or hopeless about your ability to cope with these family problems. After all, you are the "expert" on your family. You are the one who will know when you have tried as many helpful suggestions as you can, or when your child's emotions are out of control.

How to get professional help

• Asking for professional help. Getting help for family problems is like getting help for physical problems. Some parents hesitate to ask for professional help for their children's emotional problems. They may think that seeing a psychologist, psychiatrist, or social worker means they are weak or strange, or that they have failed as a parent. Being upset during a major illness is normal. So is getting help for these problems. Professionals, such as social workers, nurse counselors, clergy, psychologists, psychiatrists, and child life specialists are skilled and experienced in helping people deal with emotionally stressful experiences, just as your family doctor is there to help with physical problems.
  
  Ask for help from professionals such as social workers on the pediatric oncology team who know how to help families deal with the stresses of the illness. Other sources include child psychologists or psychiatrists, social workers who specialize in family problems, or school counselors. These professionals have worked out many solutions that might help. A good person to ask for contacts would be the social worker or nurse that you feel most comfortable with.
  
  Helping children deal with stressful feelings takes time. It will usually take several sessions with a counselor or therapist before problems seem to get better. Some people get worried when a sibling starts to talk about feelings of fear, anger, or resentment because it sounds like worsening of the problem. It is important to remember that bringing a problem out is often the first step in solving it.

What You Can Do To Help

• Seek help in understanding your other children
• Anticipate behavior problems, emotionally upheaval, and physical complaints
• Prevent sibling problems from becoming severe
• Help siblings deal with their feelings

Seek help in understanding your other children

• Talk with a child life specialist, social worker or nurse, or a child psychologist, about how to understand the behaviors and feelings of your other children. Get to know the other health professionals where your child receives care. Don't wait until a doctor or nurse recommends that you see them because of some problem. Seek them out yourselves.
  
  Pediatric oncology social workers and pediatric oncology nurses, and child life specialists can help you understand sibling behavior problems. For example, a young father described an event that upset the whole family during what should have been a happy day. His 7-year-old son with cancer had just returned home from the hospital. Within minutes, the boy's 12-year-old sister refused to help with dinner for visiting relatives. This was a big change as she used to be obedient and cheerful. Feeling left out, she was resentful and angry. The parents took a photo of her brother-but not her-at the front door. A favorite neighbor played ball with him, but ignored talking with her. When the daughter was asked to feed the cat and help with dinner, she refused. Her parents became angry and sent her to her room. The father was relieved when a social worker told him that many siblings react this way.
  
• Ask if the hospital or clinic has a special program for siblings. Most children with cancer are treated at special childhood cancer treatment centers. Many siblings confide in the health professionals who they feel most comfortable with. Staff members at these centers understand the problems of the family, and also realize that this time is especially hard on siblings, so most offer special group meetings for sisters and brothers. An example might be a day-long workshop to learn about cancer, its treatment, and its problems. Siblings get to talk about their own family experiences and share their thoughts about coping with all of the changes in the family. Programs like these help siblings feel less alone, get ideas on how to handle change, and get to know hospital staff whom they could turn to when they are having trouble coping.
  
• Meet and talk with other parents of a child with cancer who also have other children.
  
• Find or start a support group in your local community or county for parents of children with chronic illness. Support groups are usually held monthly somewhere near you, even if you live in a rural area. If you live in a city, the support group can be just for parents of children with cancer. In a rural area, the group could include parents of children with many different types of illnesses, such as cystic fibrosis, respiratory disease, deafness, blindness, or diabetes. These groups can really help. Information is given on local transportation help, help in the home, or financial assistance. These groups also deal with family problems, including helping siblings cope. Along with education, the social time and sharing time with other parents can be very supportive. Through this group, many people have become lifelong friends.
  
  In a few cases, some parents have found these support groups to be unhelpful. Parents can be constructive in a group or not help at all. It really depends on who is leading the group and what the person's intentions are. You are the best judge of what helps you, but meeting and talking with other parents at a group will allow you to find support and information that won't come to you any other way. Some of these parents may have other children who are the same age as your own, and getting them together can be a great way to help all of your other children cope.

Anticipate behavior problems, emotional upheaval, and physical complaints

• Write short instruction sheets on how you want relatives and teachers to help with any problems. Many relatives and friends will naturally give their attention to the sick child. It often helps to write instructions for them stating the problems you are having with the sibling and what you want them to do when they witness problem behaviors or emotions. This saves you a re-explanation every time you see relatives and friends and the problem is routinely treated the same way.
  
• Hold a family meeting to create an atmosphere where everyone gets to talk about how they feel. Explaining what is happening with the disease and treatment, allows family members to express worries or complaints about household affairs. Have some ground rules such as no punishing during the meetings and that everyone will get equal time to talk.

Prevent sibling problems from becoming severe

• Encourage the child with cancer to share toys and gifts and let the parents spend time with siblings. The child with cancer is still a family member and needs to feel like one. Being asked to share possessions and events and time with parents puts this child back into the family. This reminds the child that rules still apply.
  
• Explain to your other children why you can't spend as much time with them. Be honest with your children and tell them that the next few days (or weeks) will be very hard for their sister or brother so parents have to be away from home to help the child with cancer get through a tough time. Because children feel most secure when life follows a predictable course, he or she will also want to know when you'll be back home and when life will be more normal.
  
• Schedule special time on the calendar with other children to do fun things. Get a calendar for your children and mark off days and times that you will do things with them. If there is a special show or public event that they want to see, try to go with them or have a favorite relative go with them. Keep your appointments with them even if you have to change plans to do something closer to home or near the hospital. A child who is feeling lonely or left out will remember every broken promise.
  
• Explain and leave notes about who will be at home, when others will be at home, whom to call with problems, and what to eat for snacks if hungry. A list reassures the children about the next week's schedule. They can refer to it when in doubt. The best place to put the list is on the refrigerator or a kitchen cabinet. Even older children, such as teenagers and young adults, need these guidelines because they may not remember what you told them and they do not want to shoulder all the responsibility of running the household when you are away.
  
• Continue setting limits. You may feel guilty about the fact that your child has cancer, and find yourself thinking. If only I had done something different, he or she wouldn't be sick. Such feelings and thoughts are normal, but they are intensified when you feel that you can't handle your other children well. So to adapt, you change the rules. If you were strict, you get softer. If you decide that you weren't strict enough, you double the number of rules. Find a balance among basic guidelines for their day and set rules about bedtime, mealtime, homework, and recreation. Your children will appreciate the boundaries if you stick to them consistently.
  
• Take siblings into the hospital and clinic so they can learn about the disease and what it's like to have cancer. Take siblings to hospitals and clinics so they can see the child with cancer get through the appointments and tests. They can also see that having cancer is not all fun and games. After attending clinic evaluations, tests, and medical "play" sessions with child life staff, they might better understand the problems the child is going through and be less jealous of the attention the illness brings the child. They also might be able to ask better questions about what is happening after they see the inside of the hospital, doctor's office, and waiting rooms.
  
• Ask grandparents and family members and friends not to forget the other children. Relatives may focus their conversation and lavish gifts only on the child with cancer. Remind them about how hard it is for the other children at this time and that these children need to be remembered too, through conversations, cards, and small gifts.  Ask school nurses and teachers to help. Explain what is going on at home to the school staff. School nurses will then understand if your child keeps showing up in the clinic with headaches or other complaints. If they know you want them to be involved, teachers will watch for problems.

Help siblings deal with their feelings

• If the sisters or brothers of the child with cancer are young, have them make a "feeling bag" or other art project as a way of telling you about their emotions. Young children can create a "feeling bag" by decorating the outside of a paper bag with pictures from magazines and pasting on the outside of the bag all the parts of themselves they show to others. You can help them put inside the bag pictures that represent the feelings they "keep inside." This simple activity often helps children express and understand their feelings.
  
• Catch children doing good things and compliment them on good behavior or handling difficult emotions or situations. If you set up a reward system for good behavior, you'll watch the good things and focus on their positive side. For every thing you criticize them for, find other things to compliment, such as bringing dinner dishes to the sink, or entering a room without interrupting an adult conversation. This will help them feel good about them-selves and about their relationship with you. Focusing on negative things makes everyone feel discouraged and less hopeful that you can cope with the new changes.
  
• Teach children who are old enough specific ways to cope with the challenges of the illness. Children can practice stress management just like adults do. You could help them learn to take a deep breath and relax when they feel the pressure mounting. Encourage outdoor exercise, or exercise with them.
  
  You can also try to help them cope by teaching basic problem solving steps: collect facts before jumping to a conclusion or before giving up, plan what to do to deal with a problem, try different ways to solve the problem, and decide how well these actions worked. Parents could sit down and map out a plan with the child about changing problem behaviors.

Possible Obstacles

Think about attitudes or ideas that could prevent you from following the ideas in this plan to help siblings cope.

1. "I feel embarrassed that I can't deal with my other children."
   
   Response: You should not feel embarrassed because the whole family is under stress and not all of the problems with your other children are solely your fault. You will find that almost everyone will be very understanding about this.
   
   It would help to talk to other parents of children with cancer. You'll realize that they've asked for help from child life specialists, social workers, teachers, school nurses, and other relatives, and that they were helpful.
   
2. "Cancer is such a dreaded disease, and my child could die. I need to spend my energy on helping my sick child."
   
   Response: The doctor and nurses will give your sick child all the medical help needed to fight the cancer. Depending on prognosis, the child may or may not survive. But you must remember that no matter what, you are still a family. Withdrawing from the sick child's brothers and sisters will only make an already tense time more difficult.

Carrying Out and Adjusting Your Plan

1. Plan in advance how you will deal with problems that may arise.
2. Keep alert to signs that the illness is affecting other children in the family.
3. Put yourself in their shoes and try to understand why they are feeling or acting this way.
4. Review this homecare plan for ideas for helping them deal with this illness. Ask other parents for suggestions. Think back to similar situations in the past and try to recall what worked then.
5. Be realistic in your expectations. It's normal for children and for parents to have problems coping with this illness. Don't expect to eliminate problems. But you can notice them early, which is when they are the easiest to deal with. Also, progress may be slow, so be patient. Even if the problem persists, your efforts may be preventing it from getting worse.

If your plan doesn't work

If you feel that you've run out of ideas, or if the problems seem so great that you can't deal with them, you should get help from other people.

Social workers, child life specialists, or nurses who are experienced working with children with cancer and their families are a good source of ideas and guidance. Mental health professionals such as psychologists or social workers who specialize in family and children can also be helpful. Clergy, teachers or school counselors often have wide experience with families under stress and can be helpful in providing guidance.

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