The Child with a Chronic Health Problem Chapter 32: The Child with a Chronic Health Problem

Chronic Illness Chronic conditions seen in children include: congenital heart disease, Down syndrome, spina bifida, blindness, cerebral palsy, asthma, cystic fibrosis, sickle cell disease, hemophilia, diabetes, muscular dystrophy, juvenile rheumatoid arthritis, cancer, and acquired immunodeficiency syndrome.

Common Concerns with Chronic Illness Concerns common to many families of children with chronic conditions include: financial, administration of treatments and medications at home, disruption of family life, educational opportunities for the child, social isolation, family adjustments, reaction of siblings, stress among caregivers, guilt about and acceptance of the chronic condition, and care of the child when family caregivers can no longer provide care.

Overwhelming Issues Economic pressures, such as adequate health insurance; away-from-home living costs; the stress of having to keep a job, especially when the child needs the caregiver's time and attention; and the threat to job security because of time away from the job can become overwhelming to the families of children with chronic conditions.

Respite Care Respite care is important so that family caregivers can have time away from the child with a chronic condition and a break in the routine. Time away will help keep the caregivers from becoming isolated and enable them to participate in normal social activities.

Chronic Conditions: Growth and Development A chronic condition may interfere with normal growth and development depending on the diagnosis; age of the child when diagnosed; and the overall condition, severity, and long-term disability the condition may cause.

Siblings Siblings may respond negatively to the child's chronic condition by showing anger, hostility, jealousy, increased competition for attention, social withdrawal, or poor school performance. Many siblings demonstrate positive responses to the child including: helping to care for the child, protecting the child from negative reactions of others, and including the child in activities with peers.

Question Tell whether the following statement is true or false. One of the common concerns that arise when a child with a chronic illness is diagnosed is how the well siblings are going to react.

Answer True Rationale: Although the specific disorders that cause chronic illness are varied, all chronic health problems create some common challenges for clients and families. One of these concerns is the reaction of well siblings.

Promote Normal Growth and Development To help promote normal growth and development, encourage the child to participate in age-appropriate activities and to do tasks within the limitations of the child's disability. Encourage self-care by the child by: devising aids to ease tasks; integrating play and toys into the care; praising the child for tasks attempted; being sure the child is well rested before attempting tasks; and by using charts, visual aids, and stickers as ways to reward the child.

Typical Caregiver Responses Caregivers of a child with a chronic condition may respond by overprotecting the child, which may prevent the child from learning new skills. Sometimes caregivers distance themselves emotionally (rejection) or are in denial and behave as though the condition does not exist. Caregivers with acceptance are able to help the child set realistic goals.

Families Opportunity Express Feelings Help the family adjust to the child's condition by encouraging the family caregivers to express their feelings of anger, guilt, fear, and remorse by responding in a nonjudgmental way. Encourage the family to express doubts they may have about their ability to cope with the child's future and to look realistically at their resources. Offer suggestions about ways to cope, be a role model when caring for the child, and have a positive attitude.

Home Care Preparing the family for home care of the child may include: having the family caregivers observe the nurse when caring for the child so that they become comfortable performing continuing care, using equipment, giving medications, and doing treatments when the child goes home.

Question What is one of the goals of the care plan for a child with a chronic illness? a. Decrease the caregiver or family's feelings of grief, anger, and guilt b. Increase the caregiver or family’s tolerance to caring for the child at home c. Decrease respite time needed for the caregiver or family d. Increase classmate tolerance of the child

Answer a. Decrease the caregiver or family's feelings of grief, anger, and guilt Rationale: Major goals for the chronically ill child are to accomplish growth and development milestones, perform self-care tasks, decrease anxiety, and experience more social interaction. Goals for the caregiver or family are to increase their social interaction; decrease their feelings of grief, anger, and guilt; increase their adjustment to living with a chronically ill child; and teach them about caring for the chronically ill or disabled child.