Emotional
and Family Issues
Many
factors influence how a child feels about having
congenital (present at birth) heart disease, and
how it affects him/her mentally and emotionally,
including the following:
- the type of defect
Different emotions may be experienced with a
congenital heart defect that requires one operation
to repair versus one that requires many operations
and periodic or constant medical care.
- the age of the child
when the heart defect was diagnosed
A child who was diagnosed at birth and who has
grown up with the heart defect may adjust differently
than a child who learns of his/her heart disease
at an older age, after living a seemingly healthy
life.
- the number of hospitalizations
Children who require many diagnostic tests and
procedures, surgeries, and/or other hospitalizations
due to the nature of their illness may feel
angry, fearful, resentful, or withdrawn.
- the age of the child
Younger children may have difficulty understanding
their illness and may misinterpret the reasons
for tests and surgical procedures. Whereas,
older children can better understand information
about their illness and what it will take to
make them well.
- the coping skills
and temperament of the child
Some children can deal with adversity better
than others, and some children are more nervous
or anxious than others.
- body image
Surgical scars, cyanosis (blue coloring of the
skin, lips, and nailbeds), or the need for medical
therapies such as oxygen or feeding tubes often
make a child feel different from others, and
can affect self-esteem and body-image.
- family dynamics
A child's emotions can be affected by the way
his/her family members cope with the illness,
as well as other issues including the stress
felt by the family. Finances, work, and insurance
problems the family may face, or siblings who
are jealous of the extra attention the child
with the heart defect may receive due to his/her
illness, will all affect your child's emotions.
Physicians,
nurses, social workers, counselors, and other
healthcare team members can provide guidance and
recommendations for managing the many emotions
that may accompany a chronic disease. They may
also recommend community services and local support
groups.
Local
support groups are made up of children with congenital
heart disease and their families. Ask about meetings,
outings, and parties for children and their families.
It often helps to talk to others in your situation,
and for your child to experience activities with
others that are like him/her. Your child's cardiologist
(or the staff at the hospital) can give you more
information about a group in your area.
Be sure
to also ask about special camps that have been
created for children with congenital heart disease
to help them interact with each other and have
fun. Many of the volunteer counselors at these
camps are nurses, physicians, respiratory therapists,
and other medical professionals who love having
fun with the children in a camp setting, but who
are also able to give medications and help with
special needs of children with congenital heart
disease.
Click
here to view the Online
Resources of Heart Center
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