FAR EASTERN UNIVERSITY

Institute of Nursing

Care of the Mother and Child at Risk or with Problems

PEDIA

Module: Nursing Care of the Child with Chronic Condition/Life Threatening Illness

Introduction:
When a child’s illness becomes long term or is one that is projected to have a terminal outcome, a family’s
capacity to cope can become stretched beyond its limits. Support is essential for such a family if it is to survive
under this level of pressure and stress. (Nikkola, Kaunonen, & Aho, 2013).
People cope with situations depending on their perception of the event, the type and kind of support they
receive from people around them, and the ways they have found to be successful in coping with stressful
situations in the past. When working with parents of a child with a long-term or terminal illness, discovering how
the parents perceive the problem, what resources they have available, and how they plan to use these resources
are crucial in planning effective nursing care.

Learning Outcomes

At the end of this module, the student will be able to:

1. Assess the adjustment of a child or family to a chronic or terminal illness.
2. Describe common concerns of parents of children with chronic or terminal illness.
3. Identify expected outcomes for a child with a long-term or terminal illness.
4. Implement nursing care for a child such as helping parents with time management and identification of
resources.
5. Evaluate effectiveness and achievement of expected outcomes for a child and their families.

Topic Outline:

NURSING CARE OF THE CHILD WITH CHRONIC CONDITION/LIFE THREATENING ILLNESS

• Chronic Condition
• Conditions by special healthcare needs category
• Health care needs of children with chronic conditions
• Collaborative Management
• Nursing Interventions
• Expected Outcomes
• Life Threatening Conditions
• Ethical Issues

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Summary of Content

GENERAL CONCEPTS

} Knowledge of the pathophysiology of the chronic condition and anticipated disease progress
} Family assessment skills to identify the child’s and family’s strengths, reactions to the stress of the chronic
conditions, and coping mechanisms
} Ability to provide culturally sensitive care when working with family members to promote normal growth
and development
} Knowledge of resources appropriate for the child and family with a chronic condition
} The ability to identify a dysfunctional family needing intervention
} The ability to communicate effectively with other health care providers regarding any changes in the
child’s physical or psychosocial health

WHAT IS A CHRONIC CONDITION?

} One that is long term, ongoing, may or may not be considered terminal, and requires some adaptations to
daily living
} One that is expected to last at least three months

CONDITIONS BY SPECIAL HEALTHCARE NEEDS CATEGORY

Special Healthcare Need Category Chronic Health Conditions

Dependent on Medications or Special Diet Ø Diabetes

Ø Asthma
Ø Seizures
Ø Phenylketonuria
Ø Organ Transplantation
Ø Cystic Fibrosis
Dependent on Medical Technology Ø Renal Failure
Ø Bronchopulmonary Dysplasia
Increased Use of Healthcare Services Ø Cancer
Ø Sickle Cell Disease
Ø Cystic Fibrosis
Functional Limitations Ø Down Syndrome
Ø Brain Injury
Ø Autism
Ø Myelodysplasia
Ø Cerebral Palsy

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HEALTHCARE NEEDS OF CHILDREN WITH CHRONIC CONDITON

Healthcare Need

• ACCESS TO CARE – availability and accessibility to providers with knowledge as well as ancillary
services needed by children and their families

• APPROPRIATENESS OF CARE – services and care delivered by individuals with expertise and
experience that are developmentally and culturally appropriate for the child and family

• COMPREHENSIVENESS – coverage of the preventive, primary and tertiary care needs of children, and
linkages with other service systems, such as education, social services, and family support systems

• COORDINATION – families linked to medical care, financial health resources, educational and
community-based services, information is centralized

• CONTINUITY – through a medical home or pediatric health care home, linkages between primary,
specialty, therapeutic, and home care exist throughout childhood

• DEGREE TO WHICH THE SERVICES AND THE SERVICE SYSTEM ARE FAMILY CENTERED –
importance of the family reflected in the way services are planned and delivered, building on individual
and family strengths, and respecting the diversity of each family

*Collaborative Care - requires multidisciplinary health professional approach including physicians, nurse
practitioners, nutritionists, social workers, case workers, physical therapists, occupational therapists, and a case
manager.

COLLABORATIVE MANAGEMENT

GOALS
• Prevention and treatment of infection
• Maintenance of tissue oxygenation
• Nutritional and metabolic support
• Appropriate support of individual failing organs

NURSING INTERVENTION

Prevention and Treatment of Infection

} Aggressive infection control strategies
} Appropriate cultures
} Initiate broad spectrum antibiotic therapy
} Early aggressive surgery to remove necrotic tissue
} Aggressive pulmonary management
} Strict asepsis

Maintenance of Tissue Oxygenation

} Sedation
} Mechanical ventilation
} Analgesia

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 } Rest
} Maintaining normal levels of hemoglobin
} Use PEEP
} Increase preload and reduce afterload

Nutritional and Metabolic Needs

} Monitor prealbumin and plasma transferritin
} Provide adequate nutrition
} Enteral feeding

EXPECTED OUTCOMES

• The child and family establish effective coping mechanisms

• The child and family experience reduced anxiety
• The child and family demonstrate understanding and management of the condition
• Parenting patterns are appropriate and supportive of the child’s growth and development
• Role conflict and care giver strain are minimized
• Caregivers achieve adequate rest, sleep and socialization
• The child and family adjust to the child’s chronic condition
• The adolescent successfully transitions to adult health services and living arrangements

LIFE THREATENING CONDITION

Ø There is a considerable likelihood of death even though treatment may prolong the child’s life or the child
may have a complete recovery from the illness or injury

Ø May experience admission to a variety of healthcare settings

o Emergency department
o Pediatric intensive care unit
o Neonatal intensive care unit

NURSING MANAGEMENT

Ø Assessing the child’s physical and psychosocial needs

Ø Assessing the family’s psychosocial needs

Ø Providing physical and psychosocial care for the child

Ø Providing support for parental physical and emotional needs

ETHICAL ISSUES

Ø Withholding and refusal of treatment

Ø Advance directives - Do Not Resuscitate Orders

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 Ø Genetic testing and screening programs

Ø Prenatal diagnosis, therapeutic abortion, and fetal therapy

Ø Sexual and reproductive rights

Ø Sterilization of adolescents with mental retardation

Ø Organ donation and rationing of care

Ø Research involving individuals with disabilities

ACTIVITY:

Case Study:

Charlie, is a 3 year old who has had a relapse after 18 months of chemotherapy for leukemia. He was
admitted in the hospital because he has developed a severe cough and high fever. He is diagnosed as having
pneumonia. “We’re also so tired.” Her mother tells the nurse. “And he’s been sick for so long. How could he
developed something else?”

A. Identify at least 3 nursing diagnoses addressing both the child, the family and the stage of illness.
1.
2.
3.

B. (Essay)
How could you best help this parent? What would be important topics to talk to her about?

Note: Copy and paste activity then submit thru CANVAS or email. Do not forget to include your name and section.

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