Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. A prolonged childhood illness affects all family members emotionally and physically and changes relationships within the family. Luckily, this tough balancing act doesn't have to be accomplished alone: support groups, social workers, and family friends often can lend a helping hand.
Explaining Long-Term Illness
Experts once believed that the less a sick child knew about his medical condition, the better. But this protective posture is no longer the norm.
"Honest communication is the most important element in helping a child adjust to a long-term medical condition," says Donna Copeland, PhD. "Children should know that they have a serious illness and that they will have lots of medicine, but that the end goal is to get them well."
Communicating medical information clearly and honestly to your child means addressing his needs in an age-appropriate manner. "Even the smallest baby can be reasssured," Dr. Copeland notes. "An extra calming touch or soothing tone of voice lets the child know you're there."
When dealing with an older, verbal child, you should use correct medical terminology. The aim is not to frighten your child, but to give him the words to communicate information and concerns to medical professionals and others. "The words 'malignant' or 'cancer' don't have the same implications for a 3-year-old child that they do for adults," says Dale Perkel, an oncology social worker.
To maintain your child's trust, treatments and their possible discomfort also should be accurately explained to sick children. "Don't say, 'This won't hurt,'" Perkel advises if the procedure is likely to be painful. Instead, tell your child that a procedure may cause some discomfort, but then reassure him that you'll be there to support him.
Although some parents may prefer to discuss the medical facts with their child alone, others invite a doctor to answer specific questions a child may have about treatment or care issues. Many hospitals offer parents the choice of talking to their child about a long-term diagnosis alone, addressing the child with the doctor present, or including the entire medical team made up of doctors, social workers, and nurses. Perkel prefers the team approach, which allows the child to see that everyone (including his parents) is working together and that he can ask questions and get immediate and accurate answers.
Tackling Tough Emotions
Dr. Copeland urges children to regularly express their fears and feelings about changes to their bodies throughout a long-term illness. You can also ask your child what he is experiencing and listen to everything he has to say before bringing up your own feelings and explanations.
"You can't always promise everything is going to be fine," she warns. "Children need to acknowledge the reality of the situation." This kind of communication doesn't always have to be verbal. Dr. Copeland points out that music, drawing, or writing can often help a child living with a life-threatening disease to express his emotions and to escape through a fantasy world of his own design.
Your child may also need reminders that he is not responsible for his illness. "Sometimes children lapse into magical thinking, and they may connect their own behavior with their disease. Reassure them that neither they nor anyone else has caused their illness," Perkel says.
Although kids with chronic long-term illnesses certainly require extra "TLC," Perkel notes that special medical requirements don't eliminate the routine needs of childhood. The foremost - and perhaps trickiest - task for worried parents is to treat a sick child as normally as possible. Despite the circumstances, this means setting limits on unacceptable behavior, sticking to a regular routine, and avoiding overindulgence. Although this may seem impossible to a guilt-ridden or overprotective parent, spoiling or coddling your child can make it harder for him to readjust when he becomes well.
When your child leaves the hospital for home, normalcy remains the goal. All children need to visit with friends, go to school or receive homebound instruction, and have private time alone. As much as possible, it helps for parents to respect these aspects of childhood.
Family dynamics can be severely tested by the demands of a sick child. Clinic visits, checkups, and changes in physical appearance can prove demanding and at times, overwhelming. To ease these pressures, experts encourage families to try to maintain as normal a family routine as possible. Siblings should continue to attend school and their usual recreational activities; the family should attempt to provide some predictability and time for everyone to be together.
Flexibility is key. "The old 'normal' may have been the entire family around the table for a homecooked meal at 5, while the new 'normal' may be take-out pizza on clinic nights," Perkel says.
Ask school personnel to note any changes in behavior among the siblings of a sick child. Reactions to a brother's or sister's illness can take many different forms. Siblings of the chronically ill child may show the signs of stress by becoming angry, sullen, resentful, fearful, or withdrawn. They may pick fights or fall behind in schoolwork. Conversely, such children may also become too good, taking on an overly mature role in an attempt to protect their parents from further harm. In all cases, parents should pay close attention. Siblings who feel shunted aside by the demands of a sick child have been shown to be prime candidates for future emotional difficulties.
To keep siblings from feeling excluded, brothers and sisters of a sick child can and should be included in the treatment process. Depending on their ages and interest, visiting the hospital, meeting the nursing and physician staffs, or accompanying their sick sibling to the clinic for treatments can also help make the situation less frightening and more understandable.
"What they imagine about the illness and hospital visits are often a lot worse than the reality," Perkel notes. "When they come to the hospital, hopefully they'll develop a more realistic picture and see that, while unpleasant things may be part of the treatment, there are also people who care about their sibling and try to minimize discomfort."
Although no magic potion exists to reduce the stress involved in caring for a child with a long-term illness, there are ways to ease the strain. They include:
- Break problems into manageable parts. If your child's treatment is expected to be given over an extended time, Perkel suggests viewing it in more manageable time blocks. Planning a week or a month at a time may be less overwhelming.
- Attend to your own needs. Get appropriate rest and food. To the extent possible, pay attention to your relationship with your spouse, hobbies, and friendships.
- Depend on friends. Let them carpool siblings to soccer or theater practice. Permit others - relatives, friends - to share responsibilities of caring for your child. Remember that you can't do it all.
- Ask for help in managing the financial implications of your child's illness.
- Recognize that everyone handles stress differently. If you and your spouse have distinct worrying styles, talk about them and try to accommodate them. Don't pretend that they don't exist.
- Develop collaborative working relationships with health care professionals. Realize you are all part of the team. Ask questions and learn all you can about your child's illness.
- Consult other parents in support groups at your care center or hospital. They can offer information and understanding.
Updated and reviewed by: Kim Rutherford, MD
Date reviewed: October 2001
Originally reviewed by: Steve Dowshen, MD, and Dale Perkel, LCSW
Source: KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/