Assessing coping behaviors

    • Assessing coping behaviors
      • Approach behaviors
        • Asks for information regarding diagnosis and child’s present condition
        • Seeks help and support from others
        • Anticipates future problems; actively seeks guidance and answers
        • Endows the chronic illness or complex condition with meaning
        • Shares burden of disorder with others
        • Plans realistically for the future
        • Acknowledges and accepts child’s awareness of diagnosis and prognosis
        • Expresses feelings (e.g., sorrow, depression, and anger) and realizes reason for the emotional reaction
        • Realistically perceives child’s condition; adjusts to changes
        • Recognizes own growth through passage of time, such as earlier denial and nonacceptance of diagnosis
        • Verbalizes possible loss of child
      • Avoidance Behaviors
        • Fails to recognize seriousness of child’s condition despite physical evidence
        • Refuses to agree to treatment
        • Intellectualizes about the illness but in areas unrelated to child’s condition
        • Is angry and hostile to members of the staff regardless of their attitude or behavior
        • Avoids staff, family members, or child
        • Entertains unrealistic future plans for child with little emphasis on the present
        • Is unable to adjust to or accept a change in progression of disease
        • Continually looks for new cures with no perspective toward possible benefit
        • Refuses to acknowledge child’s understanding of disease and prognosis
        • Uses magical thinking and fantasy; may seek “occult” help
        • Places complete faith in religion to point of relinquishing own responsibility
        • Withdraws from outside world; refuses help
        • Punishes self because of guilt and blame
        • Makes no change in lifestyle to meet needs of other family members
        • Resorts to excessive use of alcohol or drugs to avoid problems
        • Verbalizes suicidal intent
        • Is unable to discuss possible loss of child or previous experiences with death
    • Assisting family members in managing their feelings
      • Shock and Denial
        • Shock and denial can last from days to months, sometimes even longer. 
        • Examples of denial that may be exhibited at the time of diagnosis include the following:
          • Physician shopping
          • Attributing the symptoms of the actual illness to a minor condition
          • Refusing to believe the diagnostic tests
          • Delaying consent for treatment
          • Acting happy and optimistic despite the revealed diagnosis
          • Refusing to tell or talk to anyone about the condition
          • Insisting that no one is telling the truth, regardless of others’ attempts to do so
          • Denying the reason for admission
          • Asking no questions about the diagnosis, treatment, or prognosis
      • Adjustment
        • This stage may be accompanied by several responses, which are normal parts of the adaptation process. 
        • Probably the most universal of these feelings are guilt and self-accusation.
        • Guilt 
          • Guilt is often greatest when the cause of the disorder is directly traceable to the parent, as in genetic diseases or accidental injury. 
          • However, it can occur even without any scientific or realistic basis for parental responsibility. 
          • Frequently, the guilt stems from a false assumption that the child’s condition is a result of personal failure or wrongdoing, such as not doing something correctly during pregnancy or the birth.
          • Some parents are convinced that they are being punished for some previous misdeed. 
          • Others may see the illness as a trial sent by God to test their religious strength and faith.
          • Children may interpret their serious illness as retribution for past misbehavior. 
          • The nurse should be particularly sensitive to the child who passively accepts all painful procedures. 
          • This child may believe that such acts are inflicted as deserved punishment.
        • Anger
          • Anger directed inward may be evident as self-reproaching or punitive behavior, such as neglecting one’s health and verbally degrading oneself. 
          • Anger directed outward may be manifested in either open arguments or withdrawal from communication and may be evident in the person’s relationship with any number of individuals, such as the spouse, the child, and siblings. 
          • Passive anger toward the ill child may be evident in decreased visiting, refusal to believe how sick the child is, or an inability to provide comfort.
          • Children are apt to respond with anger as well, and this includes the affected child and the well siblings
          • Children are aware of the loss engendered by their illness or complex condition and may react angrily to the restrictions imposed or the feelings of being different.
          • Siblings may also feel anger and resentment toward the ill child and parents for the loss of routine and parental attention. 
          • It is difficult for older children and almost impossible for younger children to comprehend the plight of the affected child. 
          • Their perception is of a brother or sister who has the undivided attention of their parents, is showered with cards and gifts, and is the focus of everyone’s concern.
        • During the period of adjustment, four types of parental reactions to the child influence the child’s eventual response to the disorder:
          • Overprotection: 
            • The parents fear letting the child achieve any new skill, avoid all discipline, and cater to every desire to prevent frustration.
          • Rejection: 
            • The parents detach themselves emotionally from the child but usually provide adequate physical care or constantly nag and scold the child
          • Denial: 
            • The parents act as if the disorder does not exist or attempt to have the child overcompensate for it.
          • Gradual acceptance: 
            • The parents place necessary and realistic restrictions on the child, encourage self-care activities, and promote reasonable physical and social abilities.
      • Reintegration and Acknowledgment
        • This adjustment phase also involves social reintegration in which the family broadens its activities to include relationships outside of the home with the child as an acceptable and participating member of the group.
      • Establishing a support system
        • Nursing goal is to assess which families are at risk for succumbing to the effects of the crisis.
        • Several variables influence the resolution of a crisis 
          • Available support system
          • Perception of the event
          • Coping mechanisms
          • Reactions to the child
          • Available resources
          • Concurrent stresses within the family
        • By receiving emotional support and guidance early, there is an increased likelihood that they will also cope successfully.
        • Concept of functional burden
          • Impact of the child with special needs
            • The child’s need for medical and nursing care
            • The child’s fixed deficits
            • The child’s age-appropriate dependency in activities of daily living
            • The disruptions in the family routine caused by the care
            • The psychologic burden of the prognosis on the family
          • Family Resources and Ability to Cope
            • The family’s physical resources
            • The family’s emotional resources
            • The family’s educational resources
            • The family’s social supports and available help
            • The competing demands for family members’ time and energy

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