Supporting family’s coping methods : The Child

    • The child
      • Through ongoing contacts with the child, the nurse 
        • Observes the child’s responses to the disorder, ability to function, and adaptive behaviors within the environment and with significant others
        • Explores the child’s own understanding of his or her illness or condition 
        • Provides support while the child learns to cope with his or her feelings
      • Children are encouraged to express their concerns rather than allowing others to express them for them because open discussions may reduce anxiety
      • Encouraging expression of emotion
        • Describe the behavior: 
          • “You seem angry at everyone.”
        • Give evidence of understanding: 
          • “Being angry is only natural.”
        • Give evidence of caring: 
          • “It must be difficult to endure so many painful procedures.”
        • Help focus on feelings: 
          • “Maybe you wonder why this happened to you.”
      • Promoting normalization
        • Preparation: 
          • Prepare child in advance for changes that may occur from the chronic or complex condition.
            • Tell the child in advance the possible side effects of drug therapy.
        • Participation: 
          • Include child in as many decisions as possible, especially those relating to his or her care regimen.
            • The child is responsible for taking medications or scheduling home treatments.
        • Sharing: 
          • Allow both family members and child’s peers to be a part of the care regimen whenever possible.
            • Give the child his or her medication when the other siblings receive their vitamins.
          • The parent cooks the same menu for the whole family.
          • If the child is invited to another’s home, the parent advises the family of the child’s dietary restrictions.
        • Control: 
          • Identify areas where child can be in control so that feelings of uncertainty, passivity, and helplessness are decreased.
            • The child identifies activities that are appropriate to his or her energy level and chooses to rest when fatigued.
        • Expectation: 
          • Apply the same family rules to the child with a complex chronic illness as to the well siblings or peers.
            • The child is disciplined, is expected to fulfill household responsibilities, and attends school in accordance with abilities.
    • Siblings
      • The presence of a child with special needs in a family may result in parents paying less attention to the other children. 
      • Siblings may respond by developing negative attitudes toward the child or by expressing anger in different forms. 
      • The nurse can help by using anticipatory guidance, questioning the parents about what they believe is the best way to have siblings respond to the child, and guiding them through ways to meet their other children’s needs for attention.
      • Siblings may also experience embarrassment associated with having a brother or sister with a chronic or complex condition.
      • Parents are then faced with the difficulty of responding to this embarrassment in an understanding and appropriate manner without punishing the siblings for how they feel. Parents are encouraged to talk with the siblings about how they view their affected sibling. 
        • Siblings of a child with developmental disabilities may express fears about their ability to bear normal children.
        • Many siblings benefit from sharing their concerns with other young people who are experiencing a similar situation. 
        • Support groups for siblings can help decrease isolation, promote expression of feelings, and provide examples of effective coping skills.

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