Impact of Chronic Illness, Disability, or End-of-Life Care for the Child and Family

Impact of Chronic Illness, Disability, or End-of-Life Care for the Child and Family

  • Scope of the problem
    • Increasing viability of preterm infants
    • Portability of life-sustaining technology
    • Life-extending treatments
    • Rise in the numbers of children with complex and chronic diseases
  • Chronic Conditions of Childhood
Specialty Examples of Chronic Conditions
Cardiology Complex congenital heart disease, congestive heart failure, cardiac dysrhythmias, Kawasaki disease, rheumatic fever, hyperlipidemia
Endocrinology Diabetes, congenital adrenal hyperplasia, Cushing syndrome
Gastroenterology Short bowel syndrome, biliary atresia, inflammatory bowel disease, hepatitis, cirrhosis, peptic ulcer disease, celiac disease
Hematology  Sickle cell anemia, thalassemia, aplastic anemia, hereditary anemias, hemophilia
Immunology Immune deficiency, human immunodeficiency virus, Wiskott-Aldrich syndrome, severe combined immunodeficiency disease
Nephrology Prune belly syndrome, renal disease
Neurology Cerebral palsy, ataxia telangiectasia, muscular dystrophy, seizure disorder, spina bifida, traumatic brain injury
Oncology Brain tumor, leukemia, lymphoma, solid tumors, bone tumors, rare tumors
Pulmonology Asthma, chronic lung disease, cystic fibrosis, tuberculosis
Rheumatology  Systemic lupus erythematosus, juvenile rheumatoid arthritis, dermatomyositis
  • Trends in care
    • Developmental focus
      • This instead of focusing on the chronological age or diagnosis emphasizes the child’s abilities and strengths rather than disabilities
      • Attention is directed to normalizing experiences the child’s abilities and strengths rather than disabilities.
      • It also considers family development
        • The life cycle of the family unit reflects changing ages and needs of family members, as well as changing external demands. 
        • A family member’s serious illness can cause significant stress or crisis at any stage of the family life cycle. 
        • Just as with individual development, family development may be interrupted or even regress to an earlier level of functioning. 
        • Nurses can use the concept of family development to plan meaningful interventions and evaluate care.
    • Family-centered care
      • This considers the family as the constant in the child’s life is especially evident in the care of children with special needs
      • As parents learn about the child’s health care needs, they often become experts in delivering care.
      • Health care providers, including nurses, are adjuncts to the child’s care and need to form partnerships with parents.
      • Effective communication and negotiation between parents and nurses are essential to forming trusting and effective partnerships and finding the best ways to meet the needs of the child and family
        • Family—Health care provider communication
        • Establishing a therapeutic relationship
          • Has been shown to predict improved health-related outcomes
          • To build successful therapeutic relationships with families, it is necessary for nurses to recognize parents’ expertise with regard to their child’s condition and needs. 
          • Health care environments for children with serious illnesses are fraught with obstacles that serve as barriers to successful therapeutic relationships with families. 
          • Individual discussions, especially with the case manager, primary nurse, clinical nurse specialist, or nurse practitioner, help establish a consistent and flexible care plan that can prevent conflicts or deal with these conflicts before they disrupt care.
        • The role of culture
          • For some ethnic and minority populations, cultural understandings of illness, the structure of family life, social roles for individuals with disabilities, and other factors related to the perception of children may differ from those of mainstream American culture.
          • Cultural attributes such as values and beliefs regarding an illness or chronic condition and its causation, social roles for people who are ill or disabled, family structure, the role of children, childrearing practices, self versus group orientation, spirituality, and time orientation also affect a family’s response to an illness or chronic condition in a child
    • Shared decision-making
      • This result from open, honest, culturally sensitive communication and the establishment of a therapeutic relationship among the family and health care providers.
        • Facilitating shared decision making
          • Continually assess the impact of the child’s illness and treatment on the family.
          • Provide honest, accurate information regarding the trajectory of the disease, anticipated complications, and prognostic information.
          • Discuss what the family desires for the child’s quality of life.
          • Avoid personal opinion or judgment of the family’s questions and decisions.
          • Be aware of nurses’ personal and cultural assumptions and the ways these assumptions impact communication, decision making, and judgment.
    • “Normalization”
      • This efforts family members make to create a normal family life, their perceptions of the consequences of these efforts, and the meanings they attribute to their management efforts
      • For chronically ill children, such efforts may include attending school, pursuing hobbies and recreational interests, and achieving employment and a level of independence. 
      • For their families, it may entail adapting the family routine to accommodate the ill or disabled child’s health and physical needs
      • Nurses can assist families in normalizing their lives by assessing the family’s everyday life, social support systems, coping strategies, family cohesiveness, and family and community resources.
      • Goal of home care is:
        • Normalize the life of the child, including those with technologically complex care, in a family and community context and setting.
        • Minimize the disruptive impact of the child’s condition on the family.
        • Foster the child’s maximum growth and development.


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