1. Chapter 32 The Child with a Chronic Health Problem

2. Chronic Illness
A condition of long duration or one that progresses slowly, shows little change, and often interferes with daily functioning
May affect a child’s physical, psychosocial, and cognitive development
Affects entire family
As a nurse, you may be involved in caring for these children and their families
At diagnosis
As they continue to experience ongoing and long- term needs over many years

3. Causes of Chronic Illness in Children
Chronic illness is a leading health problem in the United States
Numbers of chronically ill children are growing
More infants and children survive
Prematurity
Difficult births
Congenital anomalies
Accidents
Illnesses that once were fatal

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

5. Effects of Chronic Illness on the Family
Diagnosis of a chronic health problem causes a crisis in the family
All chronic health problems create common challenges for patients, families
Effects of these challenges on the family
Dependent upon family members’ coping abilities

6. Common Concerns with Chronic Illness
Financial concerns
Payment for treatment
Living expenses at a distant health care facility
Caregiver’s job loss because of time not at work
Administration of treatments and medications at home
Disruption of family life, such as vacations, family goals, careers
Educational opportunities for the child
Social isolation because of the child’s condition

7. Common Concerns with Chronic Illness (cont.)
Family adjustments because of disease’s changing course
Reaction of well siblings
Stress among caregivers
Guilt about, acceptance of the chronic condition
Care of the child when family caregivers can no longer provide care

8. Effects of Chronic Illness on the Family (cont.)
Parents and chronic illness
First reactions: Shock, disbelief, and denial
Initial response: Mourning for the “perfect” child they “lost,” combined with guilt, blame, rationalization
May “go shopping” for a better diagnosis or prognosis
Gradually adjust to diagnosis

9. Typical Caregiver Responses
Overprotection
Try to protect child at all costs
Fail to use discipline
Prevent child from being frustrated
Rejection
Distance themselves emotionally from the child

10. Typical Caregiver Responses (cont.)
Denial
Behave as though condition does not exist
Gradual acceptance
Take common-sense approach to child’s condition
Help child set realistic goals for self-care and independence
Encourage child to achieve social and physical skills within his or her capability

11. 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.

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

13. Effects of Chronic Illness on the Family (cont.)
Parents and chronic illness (cont.)
Overwhelming economic pressures
Inadequate health insurance
Away-from-home living expenses
Time required to take the child to medical appointments can be excessive
Family caregivers may have to learn to perform treatments and give medications

14. Effects of Chronic Illness on the Family (cont.)
Parents and chronic illness (cont.)
Vacations may be nonexistent
Difficulty finding babysitters
Respite care is often desperately needed
As child grows, concerns about education arise
Family caregivers often must become the child’s advocate

15. Concerns About Education
Availability of appropriate education
Early learning opportunities
Physical accessibility of facilities
Acceptance of the child by school personnel, classmates
Inclusive versus segregated classes
Availability, quality of homebound teaching
General flexibility of teachers and administrators

16. Effects of Chronic Illness on the Family (cont.)
Parents and chronic illness (cont.)
As the child’s condition changes
Marriages may become strained
Can blame each other for the child’s problems
Single-parent families have significant needs

17. Effects of Chronic Illness on the Family (cont.)
The child and chronic illness
May face many problems that interfere with normal growth and development
Child’s attitude toward the condition is critical element in long-term management, family’s adjustment
Child’s response to the chronic condition is influenced by response of family caregivers
Children may perceive chronic illness as punishment for bad thought or action

18. Effects of Chronic Illness on the Family (cont.)
The child and chronic illness (cont.)
Child’s perception is also shaped by whether or not dysfunctional body part is visible
Family, peers, and school personnel comprise the support system
Finding time and energy to meet the child’s emotional needs can be difficult
Older child: Developing sexual needs should not be ignored

19. Effects of Chronic Illness on the Family (cont.)
The child and chronic illness (cont.)
Disease progression can add additional stresses over time
Discrimination
Social exclusion of chronically ill children is common
Physical barriers may present problems

20. Question
A major concern for a child with a chronic illness is education. What is one of these concerns?
a. Delayed learning opportunities
b. Acceptance of the child by teachers
c. Discrimination on the playground
d. Size of classes

21. b. Acceptance of the child by teachers
Answer
b. Acceptance of the child by teachers
Rationale: As the child grows, concerns about education may become foremost among the caregivers’ worries. These concerns include the availability of appropriate education, early learning opportunities, physical accessibility of the facilities, acceptance of the child by school personnel and classmates, inclusive versus segregated classes, availability and quality of homebound teaching, and general flexibility of the school’s teachers and administrators.

22. Effects of Chronic Illness on the Family (cont.)
Siblings and chronic illness
Chronic health problem can seriously disrupt lives of brothers, sisters
Can cause anger, resentment, jealousy in well siblings
Caregivers’ failure to set limits for the ill child’s behavior while maintaining discipline for the healthy siblings can cause further resentment

23. Effects of Chronic Illness on the Family (cont.)
Siblings and chronic illness (cont.)
Siblings may feel that a brother or sister with a chronic illness is a stigma
May choose not to tell others about the ill child
Older sibling is more likely to tell others than a younger one
Both positive, negative influences can be found in behaviors of well siblings
How well siblings react to a chronically ill sibling may ultimately depend on how the family copes with stress and how its members feel about one another

24. The Role of the Nurse Play an important role in
Providing care for the child with a chronic illness
Helping the child and family learn to cope
Encourage the child, family to share feelings and reactions to the situation
Support by listening and providing appropriate interventions

25. Nursing Process for the Family and the Child with a Chronic Illness
Assessment
Ongoing process by the health care team
Data collected is reviewed, updated with each health care facility visit
Include child in admission and ongoing assessments
Observe for evidence of the family’s knowledge and understanding
Determine how the family is coping

26. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Assessment (cont.)
Observe for the family’s strengths, weaknesses, acceptance of the diagnosis
Identify needs changing with child’s condition
Consider needs changing with child’s growth and development
Adjust physical examination to correspond with child’s illness, current condition

27. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Selected nursing diagnoses
Delayed growth and development
Self-care deficit
Anxiety
Risk for social isolation
Grieving of family caregiver
Interrupted family processes
Health-seeking behaviors
Parental role conflict

28. Question Tell whether the following statement is true or false.
The child’s perception of their illness is not based on whether or not the affected body part is visible.

29. Answer
False
Rationale: The child’s perception is also shaped by whether or not the dysfunctional body part is visible.

30. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Outcome identification and planning
Major goals for the chronically ill child
Accomplish growth and development milestones
Perform self-care tasks
Decrease anxiety
Experience more social interaction

31. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Outcome identification and planning (cont.)
Goals for the caregiver or family
Increase social interaction
Decrease feelings of grief, anger, and guilt
Increase adjustment to living with a chronically ill child
Teach them about caring for the chronically ill or disabled child

32. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation
Encouraging optimal growth and development
Help caregivers recognize the child’s potential and set realistic growth and development goals
Set age-appropriate limits, enforce appropriate discipline
Encourage child to learn about the condition
Give the child choices
Encourage family caregivers to help the adolescent join in age-appropriate activities

33. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation (cont.)
Promoting self-care
Devise aids to ease tasks
Make certain child is well rested before attempting any energy-taxing tasks
Praise and reward the child genuinely, generously

34. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation (cont.)
Reducing anxiety about procedures and treatments
Explain tests, treatments, procedures ahead of time
Acknowledge painful procedures
Help child to plan strategies to cope with pain
Advise family caregivers that they should also help child to prepare for hospitalization

35. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation (cont.)
Preventing social isolation
Consider arranging for contact with peers via phone, writing, through visits
Encourage regular school attendance
Ask child about interests
Make suggestions and confer with family caregivers to ensure that proposed plans are carried out

36. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation (cont.)
Preventing social isolation (cont.)
Family caregivers may be at risk for social isolation
Help family caregivers find respite care resources
Refer family to social services for help
Encourage caregiver to express fears, anxieties

37. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation (cont.)
Aiding caregivers’ acceptance of the condition
Grief reaction
Denial is usually the first reaction that family caregivers have to the diagnosis
During the next stage, called guilt, listen to the caregivers express their feelings of guilt and remorse
Grief reactions may also occur when the family caregivers are informed that their child is deteriorating or has had a setback

38. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation (cont.)
Helping family adjust to the child’s condition
Assessed during initial and ongoing interviews
After determining the family’s needs
Provide an opportunity to express feelings, anxieties
Help them explore feelings of guilt or blame
Encourage them to express doubts
Help caregivers look realistically at their resources

39. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation (cont.)
Helping the family adjust to the child’s condition (cont.)
Serve as a role model when caring for the child
Assess family’s resources and support systems
Encourage caregivers to discuss needs of well siblings and their adjustments to the ill child’s condition

40. Nursing Process for the Family and the Child with a Chronic Illness (cont.)
Implementation (cont.)
Planning for home care
Focus plans for care at home on continuing care, medications, treatments child will need
Teach caregivers about growth and development guidelines
Caring for a chronically ill child can be an overwhelming task
Evaluation

41. 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

42. 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.