Frequent Hospitalization

Advice for families and caregivers

While any parent may find a child's illness stressful, parents of some children with special needs must cope with having an ill child on an ongoing basis and must learn how to handle frequent hospitalizations.
Q&A for Special Needs and Frequent Hospitalization
How can I help my child with the stress of being ill?
Everyone needs to learn how to handle stress in life, but for a child with a chronic illness, this skill is even more important. Teach your child some relaxation techniques and practice them together. If you have access to exercise equipment, and your child is able, having a chance to exercise might also help your child cope better by releasing tension and increasing his endorphin level. Kids at different stages of development react differently and might need different kinds of support.
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How can I prepare for my child's hospitalization when I won't know in advance when it will happen?
One thing you can do is have a pool of caregivers who have worked with your children on a regular basis and with whom your children are comfortable. Then, if you need to spend a lot of time in the hospital with one child, the caregivers can step in and take shifts at home with your other children or offer you relief at the hospital. You can find babysitters and nannies or special needs care at Care.com.
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How should I prepare my child for another hospitalization?
The goal here is to give your child as much control as possible, and to let him talk about his fears as opposed to keeping them bottled up. Here are some suggestions from Louise Bruce, a parent of three children, two of whom were frequently hospitalized:
  • Ask your child if there is anything special he'd like to do before going back to the hospital.
  • Try to have a sense of humor about the good and bad times.
  • Remind him that he'll have more time alone with you than usual.
  • Remind him about the special people and/or entertainment at the hospital.
  • In case there were unpleasant scenes at the hospital last time, tensions between the parents, or conflict between a parent and a nurse or doctor, apologize, acknowledge that it was difficult for your child, and promise it won't happen again.
  • Ask him what games or other things he'd like to bring to the hospital.

Some kids feel guilty about taking their parents away from their normal lives and the rest of the family during hospitalizations.

  • Reassure your child that the family is happy to do this special stuff for him, even though it gets hectic. He's not a burden.
  • Your brother and sister will have fun doing different and special things till you get back home.

Open up a dialogue with your child about any remembered fears from hospital experiences. Even if your child is non-verbal, bring up ideas yourself such as:

  • Was that silly x-ray machine too cold?
  • How was it waking up from surgery before Mom got there?
  • Which part scares you the most? Mom will try and change it if possible.
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Should I reassure my child that he will be okay when I'm not sure myself?
Many parents worry over how much information to share with their children. They don't want to make a child more anxious by telling too much or mislead the child by not telling the whole truth. Ask your child's doctor to guide you.
  • The goal should be honesty and age-appropriate levels of information.
  • One danger of not telling the truth is that children can come up with their own explanations, which may be worse than the truth.
  • Children often have a better understanding of serious illness, including issues surrounding mortality, than parents expect. Parents sometimes avoid uncomfortable topics such as a poor prognosis or limited life expectancy in an effort to avoid scaring the child. In some instances, though, this well-meaning approach may deprive the child of the chance to talk about something she may have figured out on her own, but might not know how to bring up.
  • Don't overwhelm the child with too much information at one time, but if you don't know the answer, say you'll find it out.
  • If you don't know how to begin, let your child ask questions. Keep your answers honest and simple.
  • Allow your child to express any fears, anger, or other upsetting feelings that she has. This will go a long way to helping her cope.
  • Empathize with whatever she is feeling. ???
  • Don't try to minimize her feelings or reality.
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What should we bring to the hospital?
Here are some suggestions from experienced parents:
  • Camcorder, with family videos so that the child can see family and friends almost as if they are present.
  • Photos of family and friends. Some people bring photo albums. Others bring photos blown up to poster size and decorate the hospital walls with them.
  • Headphones, music player, and CDs of your child's favorite music. Let your child choose them if possible.
  • Games and videos to pass the time. Let your child choose them if possible.
  • Posters of movie stars, favorite music groups, sports heroes, or anything else appropriate for hospitals that your child chooses.
  • Clothes and pajamas that your child selects.
  • Familiar and soft blankets and pillows.
  • Stuffed animals or other security objects that your child chooses.
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How can I prepare my child for her first hospitalization?
Here are some suggestions:
  • First you need to prepare yourself. Deal with your own fears before your discuss anything with your child.
  • Be as honest as possible, in language appropriate to your child's age. Don't give too much or too little information. Try to explain exactly what will happen in the hospital and, if possible, take a tour in advance.
  • Let your child know that his illness is not his fault and is not punishment for anything he has done or thought.
  • For young children, playing with a toy doctor kit, both before and after the hospitalization, can help them deal with the experience.
  • Ask your local librarian to recommend books on a child's hospitalization that would be appropriate for your child.
  • To reassure your child that he will be coming back home afterward, you can plan something for when he's better or read a book halfway through and save the rest till he comes back home.
  • In advance and during the hospitalization, let your child know that he is the expert on his feelings, and that you would like him to tell you what they are.

Children of each age have different concerns and can be approached in different ways. Try:

  • Touching--hugs, holding hands, massage, holding feet, stroking, sitting snuggled together, pats, rocking rapidly.
  • Calming techniques, words and tone of voice.
  • Encouraging expression of feelings, either verbally, or through play, art or music.
  • Fostering as much autonomy as possible.
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What behavior can I expect from my child during hospitalization?
Here are some behaviors that are to be expected and usually temporary:
  • Regression
  • Withdrawal
  • Aggressive behavior
  • Unusually obedient behavior
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How can I help my other children cope with having a sick and hospitalized sibling?
Here are some things you can do:
  • Reassure your other children that they had nothing to do with their siblings' illness. Anything they said or felt did not cause it.
  • Try to give all your children an opportunity to express their feelings (positive and negative) and to resolve conflict. If kids have trouble verbalizing their feelings, help them to write or draw or express them through music. They may feel guilty, jealous, and/or afraid.
  • Give them things they can do to help their sibling feel better, such as being quiet when their sibling needs to rest, reminding him to take his medicine, getting his homework from his teachers, etc. That will enable them to feel less helpless.
  • If you can't be home to put your well child to bed, try making a video or audio recording in which you read your child's favorite story and say goodnight. That way your child can hear your voice before going to bed and feel your presence in some way.
  • Try to set aside some time every day to be with your healthy children.
  • Get age-appropriate books for your children on having a sick sibling.
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How can I maintain a sense of normalcy in our family life?
Maintaining a family's schedules can help everyone cope.
  • It's especially important for your other children that you try to maintain normal times to get up and go to bed and as many routines as possible.
  • If you can't be there with them at these times, see if you can get a family member, friend, or a caregiver to help out.
  • Your presence will be needed at home sometimes, too.
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What can I do about issues with my spouse during these times?
Parents frequently have different coping styles. This is a difficult time for both of you. Tensions over differences will only make it more difficult:
  • Try to respect your spouse's style. If it isn't meeting your needs, see if you can find support elsewhere.
  • Sometimes when a child is sick one parent becomes the main caregiver and the other feels isolated. Try not to let that happen and to share as much caregiving as possible.
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My hospitalized child is not doing well emotionally. What can I do to help?
  • It's important to give your child a chance to share his feelings about the illness.
  • Emotions can change over time, so if you have already had this conversation, it doesn't mean you can't have it again.
  • Let your child know he doesn't have to protect you. He can express negative feelings and you will understand and not get too upset.
  • Listen, accept, and discuss your child's feelings, never minimizing them.
  • Speak to the hospital child life specialists who may have helpful advice.
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How should I prepare my child for medical tests?
Here are some suggestions:
  • Tell your child as precisely as possible what will happen and how it will feel.
  • Encourage your child to express his feelings about the test. He can discuss, write about it, draw a picture, or role play.
  • Touch can be a powerful tonic -- try to cuddle, hug, stroke, rock him, or hold hands. Let your child know it is okay to cry.
  • When he does have the test, tell your child what a wonderful job he is doing, for example, by holding still.
  • If your child is old enough, encourage relaxation techniques before and during the test.
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What can I do to minimize the chance of medical errors?

Preventing medication errors

  • Monitor medication carefully. Parents should double-check that the medicines the child receives are exactly what the physician prescribed, and that the dosage matches the prescription. Parents should know how often the child should take it, if it calls for dietary restrictions, and if any side effects might occur.
  • If you think your child has missed a dose, bring it to the attention of the staff. If a nurse brings a new or unfamiliar medication, be sure to ask questions to make sure your child is supposed to receive it, and that the dose is correct.
  • Make sure the nurses accurately record your child's weight in the chart, since most children's medication dosages are based on weight.

Preventing hospital infections

  • A significant cause of hospital infections is that doctors and staff don't wash their hands before touching patients. Make sure that any hospital employee who enters your child's room washes his hands thoroughly before approaching your child. Make sure that you, your family, and friends also wash your hands carefully before approaching your child.

Preventing improper treatment

  • Make sure the identification band the hospital gave your child is accurate and that anyone interacting with your child checks it before doing anything. This ensures the treatments or medications are meant for him and not another patient.
  • Transitions can be a time when mistakes happen. Be on the alert during shift or wing changes between nursing staff and doctors.

After the hospitalization

When your child is ready to leave the hospital, be sure to get a written summary of the hospitalization. Be clear about:

  • The treatment plan
  • When you need to return for follow-up
  • Problem signs
  • What to do and whom to contact in case any problems occur
  • When your child will be able to return to school and sports.
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How can I establish good lines of communication with the doctors who treat my child?
  • As soon as your child is hospitalized, ask who will be in charge of her care and how you can contact that person.
  • Establish a positive and mutually respectful relationship with the doctor. Then, if a difference in approach arises, it will be in the context of this positive relationship.
  • Always disagree respectfully.
  • Always speak up if something doesn't seem right.
  • Make sure the doctors offer explanations you can understand. Keep asking until you do understand.
  • Take notes when the doctors speak with you so that you will remember what they said. Check that you heard the information correctly by rephrasing it back to them.

Before a scheduled test or procedure:

  • Ask why it is being done and if there is any other way to obtain the information.
  • Ask how soon you should expect to receive the results
  • Make a clear plan for receiving the results and an explanation of what they mean for your child.
  • Never assume that not hearing means that everything is okay.
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How much involvement should my child have in handling his illness?
It helps to give your child as much control as is appropriate (such as which arm the IV goes in) as kids tend to feel helpless when they are hospitalized frequently. Also, it is important for parents to try not to overprotect their chronically ill child -- allow that child the maximum possible independence.
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My child feels so isolated and different from other kids. What can I do to help?
  • Try to find others with his illness or condition who are doing well, perhaps through the hospital or your child's physician.
  • Have your child to attend a camp for others with the same condition.
  • Knowing about celebrities with the same condition makes some kids feel better.
  • If your child needs special devices or medicines to get through a day, encourage siblings and friends to ask questions. Having others acknowledge this difference in a positive way that doesn't ignore his special needs but shows acceptance of them may help him feel better.
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Should I let family and friends help out?
This is a time when help from family and friends can make a tremendous difference. Your resources of attention, energy, and love are depleted and whatever help you can get will also help the rest of your family. Accept help with meals, chores, driving, and looking after your other children.
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What will help me get through the time in the hospital? I find it so draining and dread going back with my child.
Of course you find going to the hospital draining, especially when your child is ill. Here are some suggestions for brightening your time at the hospital:
  • Bring your favorite coffee cup to drink out of while in the hospital, rather than that awful Styrofoam. Little things like that make the experience less dreary.
  • Treat yourself to an extravagant pair of pajamas, socks, or sweats to wear while in the hospital with your child.
  • Take advantage of lattes or cappuccinos that some hospitals now offer.

When your child is awake, you'll be expending a lot of energy keeping him calm, comfortable and entertained, but when he sleeps you can use the time to:

  • Write emails or letters to friends.
  • Do something mindless and practical like clean out your purse or your email inbox.
  • Meditate, pray, or write down some goals or inspiration that will help you keep your spirits up
  • Read a great book or magazine. Many people find it hard to focus, so reading something light might be most helpful.
  • Surf the web on your laptop.
  • Spend time encouraging your child's favorite people to visit and to bring a photo of themselves that they can leave with your child.
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How can I tend to my own needs when I have a sick child?
  • Find someone to give you a respite, whether a friend, family member, or special needs caregiver.
  • Try to do something that will help you feel better.
  • Get help if you are depressed. Your depression will have a deleterious effect on your whole family.
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What can I expect from my child after leaving the hospital?
Children may have a variety of reactions after they leave the hospital. It may take your child a while to regain his sense of security. Some children regress or have difficulty separating. Others find it difficult to transition back to school. Here are some helpful techniques to deal with the reactions:
  • Continue to read books about hospitalization and let conversations emerge from the experience of reading them.
  • Encourage artwork on the topic of the hospitalization experience.
  • Role-play different scenarios about the hospital experience, giving a child the chance to present his view of it.
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