Learn everything you can about your child’s illness and treatment
Consider this to be one of the most important tasks of
caring for your child with a chronic illness. Knowledge is
power, and the more you know, the easier it will be for you,
your child and your family as you face the challenges of a
chronic illness of childhood. Being knowledgeable about your
child's diagnosis will enable you to oversee her medical
needs and know when medical attention may be needed. Also,
knowledge about the diagnosis will help you to determine
what your child can and can't do in regard to activities,
school, and responsibilities.
Having knowledge about your child's illness will also
empower parents and help you thoroughly answer any questions
your child may have about his or her illness. There are
many ways to learn more about your child's illness, including
videos, pamphlets, books and online sources. Your child's
health care providers are the best source to direct you to
accurate and comprehensive information sources. In addition
to these sources of information, do not be afraid to ask
your child's health care providers lots of questions.
It is common for parents to need information to be repeated
more than once or to ask for further information or clarification.
The team is there to help and support your child and you, and
they expect you to ask many questions, and they understand that
they are providing much new information and unfamiliar terms.
It is also helpful to keep your questions in a notebook or journal
and to take that with you to each clinic or hospital visit.
This way, you can write down questions between visits, and take
notes when information is given to you. Some parents use a
3-ring binder so information can be added or deleted throughout
their child's treatment.
Skills list
- Learn about your child’s illness and treatment
- Commmunicate openly with your children
- Help your child learn to cope with life changes
- Help your other children, spouse and extended family cope
- Prepare your child for procedures and hospitalization
- Maintain as much normalcy as possible
- Set limits, and provide discipline
- Continue normal expectations for your child
- Communicate with your child’s school
- Help your child explain the illness to others
- Accept help graciously
- Empower your child
- Help your child find a buddy with the same illness
- Handle (unsolicited) advice
- Take care of yourself
For more information, please contact:
Kathy Davis, MSEd, PhD
kdavis2@kumc.edu
(913) 588-6305