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Which children with chronic conditions would be most likely need to be cared for in a long term care situation? Genetic conditions; Congenital defects or insult during fetal development; Insults associated with or following birth; Conditions acquired through injury or acute medical condition
Define medically fragile conditions Child with life-threatening illness or chronic condition as result of complex illness, prematurity, or congenital defect.
At what age is it reasonable to teach children to be more independent in the management of their chronic conditions? Early school-age children have an increased understanding of their condition, and they can participate in certain aspects of monitoring & care.
What psychological and developmental problems would you expect a teen with a chronic condition to suffer from? some are unable to cope with recognizable differences between themselves & healthy peers, and they withdraw from social activities & relationships or are drawn to a peer group that may negatively influence behavior just to be accepted by peers.
Define the stages that parents go through before accepting the idea that their child has a life-long chronic condition. Initial reactions are shock & denial, anger, guilt, and a sense of hopelessness. Chronic sorrow is believed to be a coping mechanism that allows parents to grieve periodically and permits them to carry on with responsibilities at other intervals.
Identify the ways that parents can prevent care-giver burnout. Spousal support is essential to manage all the family & childcare requirements. Encourage the family to participate in support groups; to take respite time from the child’s care, assist them in determining satisfactory arrangements for respite care.
Be able to identify parental statements suggestive of care-give fatigue. Caregiver burden is unrelenting pressure & anxiety of providing care to a child with disabilities day after day. Mothers may be unable or not have energy to meet their own personal needs for health care. Social isolation may be experienced
How can Nurses partner more effectively with parents trying to compose an Individual Education Plan? IEP is developed for a child with cognitive, motor, social, or communication impairment who needs special education services.IEP is jointly planned with school administrator, school nurse, teacher, parents
How can toddlers be encouraged to be more independent when they have disabling conditions? By offering the child choices when possible, such as which color of gown to wear or which food to eat first. Help parents recognize toddler’s capabilities & allow the child to practice & learn the skill.
What is one difficult and potential ethical dilemma that may confront parents of a child with a chronic, disabling condition? withholding & refusal of treatment; advance directives (DNR); genetic testing & screening programs; sexual & reproductive rights, sterilization of adolescents with mental retardation;organ donation & rationing of care; research
What are some realistic goals for a child with cerebral palsy? Child will attain maximum physical abilities possible; child will receive nutrients needed for normal growth; child will engage in activities that maximize growth & development.
Identify activities that are associated with Family Stagnation, Family Normalization, Family Isolation. Through normalization, family views care of the child as a “normal” part of life, rather than an inconvenience or something outside of their routine. Families develop flexibility in management of the treatment plan, making life easier for the family.
How do siblings of different ages/developmental levels react to a child with a chronic condition? Negative responses predominate and include feelings of jealousy, resentment, anger, depression, worry, and anxiety. Siblings who adjust more positively are those who are older at time illness occur, have a more cohesive family, positive communication
How would the nurse best serve a school age child with a chronic condition to understand his care/management? Begin to identify aspects of child care that child can learn to assume under parent’s supervision. Link the child to a peer support group to promote social interaction & to help the child recognize that others also have same condition.
What are the transitional needs of an adolescent with a chronic condition? Discuss sexual maturation & importance of protected sexual activity. Need to plan for vocational & health care transitions.Encourage them to have safety nest of friends who