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
the emotional needs your child may have and the emotional impact
that the 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 crucial 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 and the 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 any treatments - and 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 support while or after it's done.
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 any feelings, 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 living with a
life-threatening disease express their emotions and escape through
a fantasy world of their own design.
Kids may also 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 caused the illness. (You may also 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 the illness.
Your child may ask "am I going to die?" How you answer
will depend on 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
sleep.
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 physical illness.
Behavioral Issues
Kids with chronic illnesses certainly require extra
"TLC," 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, particularly if you have feelings of guilt or
an intense need to protect your sick child. 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 goal.
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 they don't feel pushed
aside by the demands of their sick brother or sister.
It may 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
also help make the situation less frightening and more
understandable for the healthy siblings.
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 sibling 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 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 aspects 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.
- Explore support groups for parents who have children with the
same or similar illness.
- Keep a journal.
- Utilize support staff offered at the treating hospital.
Reviewed by:
Dale Perkel, LCSW
Date reviewed: October 2008
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
© 1995-2009 The Nemours Foundation/KidsHealth. All rights reserved.