Educating about the disorder and general health care

  • Educating about the disorder and general health care
    • Activities of daily living
      • Possible differences in nutritional requirements
      • Common problems are undernutrition resulting from food being 
        • Inappropriately restricted or loss of appetite
        • Vomiting or motor deficits that interfere with feeding
        • Overnutrition
          • Due to caloric intake in excess of energy expenditure because of boredom and lack of stimulation in other areas
    • Safe transportation
      • Modification regarding car safety
    • Primary health care
      • All the usual health care
      • Communication in an emergency
  • Promote Normal Development
    • Early childhood
      • Basic trust, separation from parents, beginning independence
        • Characteristics of parental overprotection
          • Sacrifices self and rest of family for the child
          • Continually helps the child, even when the child is capable
          • Is inconsistent with regard to discipline or uses no discipline; frequently applies different rules to the siblings
          • Is dictatorial and arbitrary, making decisions without considering
          • the child’s wishes, such as keeping the child from attending school
          • Hovers and offers suggestions; calls attention to every activity; overdoes praise
          • Protects the child from every possible discomfort
          • Restricts play, often because of fear that the child will be injured
          • Denies the child opportunities for growing up and assuming responsibility, such as learning to give own medications or perform treatments
          • Does not understand the child’s capabilities, and sets goals too high or too low
          • Monopolizes the child’s time, such as sleeping with the child, permitting few friends, or refusing participation in social or educational activities
    • School age
      • Industry/activity
        • Preparation for entry into or resumption of school is best accomplished through a team approach with the parents, child, teacher, school nurse, and primary nurse in the hospital. Ideally, this planning should begin before hospital discharge, provided that the child is well enough to resume usual activities.
        • They need preparation before entering or resuming school. 
          • Having a tutor in the hospital or home as soon as children are physically able helps them realize that school will continue and gives them time to consider this prospect
        • Children need the opportunity to interact with healthy peers and to engage in activities with groups or clubs composed of similarly affected agemates.
    • Adolescence
      • Developing independence/autonomy
        • Redefining autonomy in terms of individuals’ capacities to take responsibility for their own behavior, to make decisions regarding their own lives, and to maintain supportive social relationships.
  • Establish realistic future goals
    • Cultivate realistic vocations for the child with chronic illness or disabilities
    • Prolonged survival leads to new decisions and problems
      • Independent living
      • Marriage, employment, insurance coverage
      • Reproductive decisions


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