1. The Child With a Chronic Health Problem
Chapter 7

2. Diseases Causing Chronic Illness in Children
Congenital heart disease
Cystic fibrosis
Juvenile arthritis
Asthma
Hemophilia
Muscular dystrophy
Leukemia and other malignancies
Spina bifida
Immunodeficiency syndromes

3. Common Concerns for Families Dealing With a Chronic Illness
Financial concerns
Administration of treatments and medications at home
Disruption of family life
Educational opportunities for the child
Social isolation because of the child’s condition
Family adjustments due to the disease’s changing course

4. Common Concerns for Families Dealing With a Chronic Illness (cont.)
Reaction of well siblings
Stress among caregivers
Guilt about, and acceptance of, the chronic condition
Care of the child when family caregivers can no longer provide care

5. Typical Reactions of Parents to the Diagnosis of Chronic Illness
First reactions may be shock, disbelief, and denial
Economic pressures can become overwhelming
Adjustments are made to care for the chronically ill child
As the child grows, concerns about education may become foremost worry
As the child’s condition changes, the family must make additional changes

6. Reponses of Caregivers to Diagnosis of Chronic Illness in Their Child
Overprotection
Rejection
Denial
Gradual acceptance

7. Reactions of the Child to Chronic Illness
The child may face many problems that interfere with normal growth and development
The child’s response to the chronic condition is influenced by the response of family caregivers
Children often perceive any illness as punishment for a bad thought or action
The child’s family, peers, and school personnel comprise the support system that can affect the child’s adaptation

8. Reactions of the Child to Chronic Illness (cont.)
Additional stresses continue to occur as the disease progresses
Discrimination continues to be present in the life of the chronically ill child and the family

9. Negative Reactions of Siblings to Chronic Illness
Anger
Hostility
Jealousy
Increased competition for attention
Social withdrawal
Poor school performance

10. Positive Reactions of Siblings to Chronic Illness
Caring and concern for the ill sibling
Cooperating with family caregivers in helping care for the ill child
Protecting the ill child from negative reaction of others
Including the ill child in activities with peers

11. Assessing the Family and Child With a Chronic Illness
Review the data collected and update with each visit to the health care facility
Include the child in the admission and ongoing interview processes
Observe for evidence of the family’s knowledge and understanding of the illness to adjust as necessary
Determine how the family is coping with the child’s condition

12. Assessing the Family and Child With a Chronic Illness (cont.)
Observe for the family’s strengths, weaknesses, and acceptance of the diagnosis
Identify the needs that change with the child’s condition and include them in planning care
Consider needs that change with the child’s growth and development

13. Major Goals for the Chronically Ill Child
Accomplishing growth and development milestones
Performing self-care tasks
Decreasing anxiety
Experiencing more social interaction

14. Major Goals for the Caregivers of a Child With Chronic Illness
Increasing social interaction
Decreasing feelings of grief, anger, and guilt
Increasing adjustment to living with a chronically ill child
Increasing knowledge about caring for the chronically ill or disabled child

15. Planning for Home Care for the Chronically Ill Child
Focus on the continuing care, medications, and treatments the child will need
Include family caregivers when caring for the child so that they become comfortable with the care
Demonstrate the use of the equipment and treatments
Give caregivers a chance to perform the treatments
Discuss the home’s facilities to help the family accommodate any special needs the child may have

16. Planning for Home Care for the Chronically Ill Child (cont.)
Give the caregivers a list of community support services
Teach caregivers growth and development guidelines
Encourage caregivers to express their concerns
Provide a contact person to call for support

17. Methods to Encourage Self-Care in the Child With Chronic Illness
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
Using charts, visual aids, and stickers to reward the child