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By LeAne Austin, RN
Despite this apparent acceptance of their
ill-defined role, children demonstrate recognizable
physical and emotional responses to their situation.
These can include, but are not limited to: changes
in social behaviors, decline in school performance,
decreased participation in previously enjoyable
activities, mood disturbances, increased fatigue,
personality changes and “escape” behaviors, such as
self-isolation. Changes in social behaviors can be
seen in the way they interact with both adults and
other children. Some use more adult language,
engaging adults in social situations rather than
persons of their own age, while others appear to
regress or demonstrate attention-seeking behaviors
such as baby talking, excessive crying or thrill
seeking. School performance changes can result from
preoccupation or worry about the ill or disabled
person, though this is generally more prevalent at
the beginning of the changes at home than when the
situation is long-term. Behaviors which are
disruptive in social situations affect school, as
well, and the child may talk in class, become
tearful, or pull pranks which land them in the
principal’s office, or which require that the child
be sent home, as a conscious or unconscious attempt
to regain their child role.Children generally tend
to be self-focused. With the addition of the illness
or disability, that focus necessarily and abruptly
changes to one of helping others. Rather than
indulging in their usual enjoyable activities, they
may decline invitations for age-appropriate
activities because they need to “go home and help
mom” or whoever they are assisting at home. This
increased sense of responsibility, though somewhat
overdeveloped due to the unique situation in which
they have been placed, overtakes the drive to seek
personal enjoyment.
Mood swings can also be evident in some youngsters.
A sense of loss of control, fear, or guilt that they
may have been the cause of the illness, or if they
have suffered a significant loss can manifest
themselves in very strong feelings. Incidents that
would not have warranted even a mild response can
become gigantic and the focus of these strong
emotions may result in verbalized and sometimes
displaced anger. This anger is rarely directed at
the object of the feelings, however, which makes it
difficult to diagnose and, subsequently, challenging
to address. And, as children have generally less
sophisticated ways in which to communicate their
feelings, they may express them as behaviors.
Fatigue can be an emotional or physical
manifestation, with the pressures of school,
combined with greater duties in the home, and the
stress of taking on a parental role in the care of
the ill person. The child may not fall asleep
easily, have trouble staying asleep, or wake up
early, “thinking.” Personality changes can be
related to sleep disturbance, internalized guilt or
resentment, response to stress chemicals in the
body, or a change related to how the child “thinks”
they should be acting. Assuming the role of
caregiver plays directly into the role-conflict—am I
a child or am I an adult?