Children in the Hospital
Overview
Being hospitalized can be a frightening experience for a child. Most children are used to a predictable and safe world of family, home, and school. When they are faced with a world full of new people and strange machines and their parents seem scared and upset, many feel a loss of control and order. In the following sections are some tips that can help you and your child to cope with hospitalization, including how to prepare a child for procedures and what medical information is appropriate for various age groups. If your child has just been diagnosed with leukemia, you are likely to be feeling a wide range of emotions, including shock, anger, hope, fear, guilt, and even grief. These are all normal and expected as you adjust to the news of a serious illness. You will probably find that over time you accept the diagnosis and focus more on treatment. Your emotions may become less intense as time goes by. Don't hesitate to seek counseling - talking with a trained counselor or participating in a support group can be very helpful for parents, as well as for siblings and other relatives.
Be Your Child's Advocate
You know what is likely to scare your child and what might comfort him. While you can't protect him from everything that might hurt in the hospital, you can do much to minimize the fear and discomfort. Just being with your child will make a big difference. If the hospital says you can't stay with him overnight, ask why not. Enlist grandparents and friends to cover shifts when you can't be there. Insist that procedures be done in the most painfree way possible, even if that requires a little more preparation time. Double-check that all procedures were ordered by the doctor and are necessary. In other words, stand up for what you and your child need, and be an informed medical consumer.
What to Tell Children
In years past, parents often didn't tell children when they were seriously ill. Most do so these days, keeping the information appropriate for the child's age. Knowing what is going on seems to help children cope with procedures better. And even if you try to hide it from your child, he is likely to figure it out anyway - and to perhaps try to hide that knowledge to spare you any further pain. Keeping such secrets only makes it even harder for children. It often helps to have trained social workers or nurses who can help you shape an age-appropriate message. You may also find books and videos that can help you to explain at some of the organizations listed in the Resources section of this program. Encourage your child to ask questions. When telling your child that he is seriously ill, keep in mind the fears and anxieties that are typical for his age.
- Children under the age of 4 or 5 mostly fear separation from their loved ones.
- Children aged 4 or 5 to 12 can understand quite a bit of what is going on. The fear of separation is less acute and may be replaced with a fear of pain and injury. Make sure your child understands that nothing he did - such as falling off a bicycle - caused the illness. Also make sure he understands it is not contagious.
- Teenagers are usually well aware of how serious their disease is and may fear illness and death more than anything else. They also are likely to be quite concerned about possible changes to their bodies and how their peers will see them. Teenagers also may find it hard to suddenly be so dependent on others, just when they were becoming more independent.
Helping Children Cope with Procedures
Medical procedures such as blood draws and bone marrow aspirations can be frightening for children. A child may have no idea what is going to happen and may think he is being punished. He may feel a severe loss of control over his life, and may react with anger and frustration.
- Make sure you understand the procedure fully so you can explain it to your child. Be honest, but don't overwhelm him with information.
- Use dolls, drawings, books, and videos to help explain what will happen. Get a toy medical kit so you and your child can act out the procedure on stuffed animals or dolls.
- Ask a doctor, nurse, or other health care worker for help in explaining procedures to your child. You know your child well, of course, but they have lots of experience in what medical information children are comfortable hearing and common misperceptions.
- Try to have procedures done by health care professionals who have experience with children. If possible, have the same people do procedures in the future - familiarity can be comforting.
- Find out how much advance notice of procedures your child wants. Some like to know several days ahead of time, some don't. Encourage questions and expression of feelings. Don't dismiss their fears as nothing. Remember that children can imagine some very wild ideas of what is going to happen.
- If possible, stay with your child during the procedure or be there when he wakes up.
- Help your child to maintain some sense of control. Let him make as many choices as possible: choosing a toy to hold during a procedure, choosing which arm gets a needle stick, or choosing which pills to swallow first.
- Consider the promise of a special treat or toy after the procedure.
- Allow your child's preferences to change over time. Treatment for leukemia can take months or years. Your child's needs will change during that time; teenagers, for example, might no longer want their parents to accompany them during exams and procedures. Respect their decisions.
Pain Control
Some hospitals routinely use pain medications or anesthesia during procedures such as bone marrow biopsies. Others do not. Find out before the procedure what your doctor's policy is, and if no pain control is offered, ask why not. Ask to consult with an anesthesiologist or other pain control expert if necessary.
There are several options for pain control.
- EMLA cream is used to anesthetize the skin before a blood draw or other procedure.
- Valium and versed are sedatives that relax the patient.
- Morphine and fentanyl are powerful pain relievers.
- Propofol is a type of general anesthesia. It can be given at doses that do not leave the patient unconscious and do not relieve all pain, but do block any later memory of it.
Some people also find hypnosis, guided imagery, or distraction to be helpful in maintaining calm and coping with discomfort. To find someone who can help you use these tools, ask your doctor or social worker for a referral or consult one of the organizations in the Resources section of this program.
Making the Hospital Livable
There are many things you can do to make a hospital experience more tolerable.
- Find the playroom. It may be staffed by professionals who can help your child deal with his feelings through play and art. Many hospitals have play specialists who will visit the child's bedside if he can't get to the playroom.
- Bring lots of toys, books, CDs, drawing paper, coloring books, loose clothing, and photos of home.
- Bring audio and video tapes of family members, friends, and classmates. Encourage those who can't visit often to send new tapes periodically. For small children, if one parent cannot be there often due to distance or work responsibilities, have him or her tape record a special bedtime story.
- Bring a laptop computer so the child can communicate with friends and family by e-mail. He may also want to participate in an age-appropriate online support group.
- Give a teen-ager a pre-paid phone card so he can call his friends when he wants to, without relying on change from mom and dad or running up huge bills on the hospital phone.
- Make use of the skills and knowledge of the social workers and other staff; they can help everyone in the family cope. Explore counseling, support groups, and other programs.
- Let friends and family help you cope. If someone asks what he can do to help, give him a job - even something as simple as mowing your lawn, driving your other children to activities, or feeding your pets. It lets him help you and frees up your time.
- If you want to keep a group of friends and family informed about the child's progress, consider setting up a standard e-mail distribution list that you can use to update everyone at once. Or ask a friend to set up a phone tree or to be the designated information source. Some families even set up a web site complete with pictures and daily updates to keep everyone informed.
- It's natural to want to indulge your sick child's every whim, but it's important to continue to set rules and boundaries. It helps to maintain some sense of normalcy. Some children say that being overindulged was actually scary - they knew something was really wrong.
Siblings
Don't forget to tell your other children what is going on. Siblings tend to be shunted aside when one child is seriously ill. The disruption to the family might cause them to feel guilt, jealousy, fear, or a sense of abandonment. Some will act out these feelings in school or regress behaviorally. Talk to them honestly about what is happening. Encourage questions. Try to get siblings involved in the hospital routine in some way - for example, ask them to record a fun videotape or put together a box of toys that will help entertain the sick child. As much as possible, spend time with them apart from the hospital scene. Also explore some resources just for them - many hospitals have programs and support groups for siblings that can help them to understand what is going on and to feel like part of the team.
School
Many children continue to attend school while being treated for leukemia, but your doctor will give you specific instructions. School can help to provide the child with a sense of normalcy - a place to just be a kid, rather than a patient, and to enjoy learning and social contact with peers. Most adjust well to being in school during treatment, even if issues such as hair loss or weight gain provoke some initial reluctance. Talk with your child's teachers and the school nurse about any limitations or precautions to be followed. However, while the staff may want to be protective of the child, they should be encouraged to treat the child as just another student, not a patient. If the child is expected to be absent frequently, talk to the teachers about how he can keep pace with the class or make up work later. Your child's classmates will have questions and concerns. You might want to have a social worker or nurse give a presentation to the class on leukemia. If your child's appearance has changed you might want to send a few photos along with the social worker or nurse so she can explain the changes. Even when your child is not in school, encourage ongoing contact with classmates through phone calls, letters, or drawings.
Camp
During the summer months camp can help to provide children with a sense of normalcy. Investigate the possibilities - some camps are just for children with cancer, while other "mainstream" camps are also well prepared to accept children with serious illnesses. Some camps have programs for the siblings of cancer patients. The American Camping Association and other organizations listed in the Resources section of this program can help you find a suitable camp.
