Taking care of a chronically ill child is one of the most draining and difficult
tasks a parent can face. Beyond handling physical challenges and medical needs, you'll
have to deal with your child's emotional needs and the impact that a prolonged
illness can have on the entire family.
Luckily, this tough balancing act doesn't have to be done alone: support groups,
social workers, and family friends often can lend a helping hand.
Explaining Long-Term Illness to a Child
Honest communication is vital to helping a child adjust to a serious medical condition.
It's important for a child to know that he or she is sick and will be getting lots
of care. The hospital, tests, and medicine may feel frightening, but they're part
of helping your child feel better.
As you explain the illness and its treatment, give clear and honest answers to
all questions in a way your child can understand. It's also important to accurately
explain and prepare your child for treatments — and any possible discomfort
that might go with along with those treatments.
Avoid saying "This won't hurt" if the procedure is likely to be painful. Instead,
be honest if a procedure may cause some discomfort, pain, pressure, or stinging. But
then reassure your child that it will be temporary and that you'll be there to offer
Many hospitals give parents the option to speak to their child about a long-term
diagnosis alone, or with the doctor or the entire medical team (doctors, social workers,
nurses, etc.) present. Your doctor or other medical professional probably can offer
advice on how to talk to your child about the illness.
Tackling Tough Emotions
Your child will have many feelings about the changes affecting his or her body,
and should be encouraged and given opportunities to express those feelings and any
concerns and fears. Ask what your child is experiencing and listen to the answers
before bringing up your own feelings or explanations.
This kind of communication doesn't always have to be verbal. Music, drawing, or
writing can often help kids express their emotions and escape through a fantasy world
of their own design.
Kids also may need reminders that they're not responsible for the illness. It's
common for them to fear that they brought their sickness on by something they thought,
said, or did. Reassure your child that this is not the case, and explain in simple
terms what is going on. (You also may want to reassure your other kids that nothing
they said or did caused their sibling's illness.)
For many questions, there won't be easy answers. And you can't always promise that
everything is going to be fine. But you can help your child feel better by listening,
saying it's OK and completely understandable to have those feelings, and explaining
that you and your family will make him or her as comfortable as possible.
If a child asks "why me?" it's OK to offer an honest "I don't know." Explain that
even though no one knows why the illness occurred, the doctors do have treatments
for it (if that's the case). If your child says "it's not fair that I'm sick," acknowledge
that your child is right. It's important for kids to know it's OK to feel angry about
Your child may ask "am I going to die?" How you answer will depend not only on
your child’s medical situation, but also your child's age and maturity level.
It's important to know, if possible, what specific fears or concerns your child has
and to address them specifically.
If it is reassuring to your child, you may refer to your religious, spiritual,
and cultural beliefs about death. You might want to stay away from euphemisms for
death such as "going to sleep." Saying that may cause children to fear going to bed
Regardless of their age, it's important for kids to know that there are people
who love them and will be there for them, and that they'll be kept comfortable.
Just like any adult, a child will need time to adjust to the diagnosis and the
physical changes and is likely to feel sad, depressed, angry, afraid, or even to deny
that they are sick. Think about getting professional counseling if you see signs that
these feelings are interfering with daily function, or your child seems withdrawn,
depressed, and shows radical changes in eating and sleeping habits unrelated to the
Kids with chronic illnesses certainly require extra "tender loving care", but
also need the routines 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 normal routines, and avoiding overindulgence. This may seem
impossible, but spoiling or coddling can only make it harder for a child to return
to daily activities. When your child leaves the hospital for home, normalcy is the
Dealing With Siblings
Family dynamics can be severely tested when a child is sick. Clinic visits, surgical
procedures, and frequent checkups can throw big kinks into everyone's schedules and
take an emotional toll on the entire family.
To ease the pressure, seek help to keep the family routines as close to normal
as possible. Friends and family members may be able to help handle errands, carpools,
and meals. Siblings should continue to attend school and their usual recreational
activities; the family should strive for normalcy and time for everyone to be together.
Flexibility is key. The "old normal" may have been the entire family around the
table for a home-cooked meal at 6:00, while the "new normal" may be takeout pizza
on clinic nights.
Also, consider talking with your other children's teachers or school counselors
and let them know that a sibling in the family is ill. They can keep an eye out for
behavioral changes or signs of stress among your kids.
It's common for siblings
of a chronically ill child to become angry, sullen, resentful, fearful, or withdrawn.
They may pick fights or fall behind in schoolwork. In all cases, parents should pay
close attention, so that their other kids don't feel pushed aside by the demands
of their sick brother or sister. It can help if parents reserve some special time
for each sibling.
It can also help them to be included in the treatment process when possible. Depending
on their ages and maturity level, visiting the hospital, meeting the nursing and physician
staffs, or accompanying their sick sibling to the clinic for treatments can help make
the situation less frightening and more understandable.
What they imagine about the illness and hospital visits are often worse than the
reality. When they come to the hospital, they can develop a more realistic picture
and see that, while unpleasant things may be part of the treatment, there are people
who care about their brother or sister and do their best to help.
Lightening Your Load
The stress involved in caring for a child with a long-term illness is considerable,
but these tips might ease the strain:
Break problems into manageable parts. If your child's treatment is expected to
be given over an extended time, view 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 plenty of rest and, 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. Let
others — relatives, friends — share responsibilities of caring for your
child. Remember that you can't do it all.