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Children as Caregivers
By LeAne Austin, RN

(Page 2 of 4)

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?


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