Chapter 32 The Child with a Chronic Health Problem

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

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

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

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

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

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

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

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

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

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 patients and families. One of these concerns is the reaction of well siblings.

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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.