NUR244 LECTURE 8

Evidence Based Care of Children with Chronic Illness and Complex Medical Needs

Learning Objectives

  • Develop an understanding of common chronic health conditions experienced by children and young people in Australia.

  • Review evidence-based symptom assessment and interventions associated with common chronic conditions experienced by Australian children and young people.

  • Develop understanding of evidence-based nursing assessments and interventions used in the care of infants, children, and young people with complex medical needs.

  • Explore causes of complex medical health problems in children and young people.

  • Consider resources and services available to families of children and young people with complex medical needs.

Specialty Examples of Chronic Conditions

Cardiology

  • Complex congenital heart disease

  • Congestive heart failure

  • Cardiac dysrhythmias

  • Kawasaki disease

  • Rheumatic fever

  • Hyperlipidaemia

Endocrinology

  • Diabetes

  • Congenital adrenal hyperplasia

  • Cushing’s syndrome

Gastroenterology

  • Short bowel syndrome

  • Biliary atresia

  • Inflammatory bowel disease

  • Hepatitis

  • Cirrhosis

  • Peptic ulcer disease

  • Coeliac disease

Haematology

  • Sickle cell anaemia

  • Thalassaemia

  • Aplastic anaemia

  • Hereditary anaemias

  • Haemophilia

Immunology

  • Immune deficiency

  • Human immunodeficiency virus (HIV)

  • 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

Effects of Hospitalization on Children

Stress and Separation Anxiety

  • Developmental Response:

    • Infants and Preschool:

    • Separation Anxiety

    • Stage of Protest

    • State of Despair

    • Detachment or Denial

    • Early Childhood:

    • Greatest level of separation anxiety.

    • Typical reactions may continue even after hospital discharge.

    • Later Childhood and Adolescence:

    • Feelings of loneliness and isolation.

    • Heightened fears regarding treatments.

    • Concerns over losing self-determination and choices.

    • Potential feelings of anger, sadness, stress, and regression.

    • Cooperation difficulties and sleep disturbances.

Effects on Families

  • Parental Reactions:

    • Various emotional responses such as denial or anger.

  • Sibling Reactions:

    • Potential challenges siblings may face such as jealousy or feelings of neglect.

Identifying Family Needs

  • Assess strengths and family dynamics.

  • Evaluate family adjustments to the child's condition.

  • Provide support at diagnosis.

  • Accept a range of emotional reactions (denial, guilt, anger).

  • Support family coping mechanisms and advocate for empowerment.

  • Educate about the disorder and general healthcare practices.

Adaptive Tasks of Parents Having Children with Chronic Conditions

  1. Accept the child’s chronic condition.

  2. Manage the day-to-day care of the child’s needs.

  3. Support the child’s normal developmental progression.

  4. Attend to the developmental needs of siblings and other family members.

  5. Cope with ongoing stress and periodic crises in a constructive manner.

  6. Assist family members in managing their emotional responses to challenges.

  7. Educate others (teachers, caregivers) about the child’s condition.

  8. Establish a sustainable support network for family and child.

Impact of Chronic Illness on the Child

Developmental Aspects

  • A child's interactions and achievements are significantly influenced by their health condition:

    • Early Childhood:

    • Development of basic trust in caregivers, managing separation, and fostering independence.

    • School-age:

    • Fostering industry and activity; balancing health with learning.

    • Adolescence:

    • Developing independence and autonomy amidst health challenges.

Promoting Normal Development

  • Support must consider the development of the entire family, including:

    • Parents

    • Siblings

    • Extended family and friends

Establishing a Support System

  • Intrafamilial resources:

    • Facilitate communication and support among family members.

  • Social support systems:

    • Engage with community health services and resources.

  • Parent-to-parent support:

    • Create networks for sharing experiences and practical advice.

  • Parent-professional partnerships:

    • Encourage collaboration with healthcare professionals for shared decision-making.

  • Community resources:

    • Access to local services, support groups, and financial resources.

Nursing Assessment and Interventions

Respiration

  • Potential Issues:

    • Impaired respiration and oxygenation may result from medical conditions.

  • Interventions:

    • May require tracheostomy, ventilation, suction, and/or oxygen therapy.

    • Risk of aspiration leading to pneumonia; speech therapy may assist in improving oral motor skills.

Mobility

  • Challenges:

    • Risk of muscle contractures, falls, postural issues, and bladder/bowel control problems.

  • Goals:

    • Prevent or delay complications, maintain mobility and function.

Nutrition and Hydration

  • Needs Assessment:

    • Potential difficulties with chewing and swallowing may necessitate monitoring or enteral feeding via:

    • Nasogastric tubes: typically for short-term use.

    • Gastrostomy tubes: for long-term feeding needs.

    • May require high-calorie feeds, or intravenous (parenteral nutrition) if unable to digest food adequately.

Communication

  • Challenges:

    • May face difficulties in verbal communication, requiring alternative strategies such as

    • Picture exchange systems or computer-assisted devices.

    • Use of supportive interpersonal communication techniques (body language, tone, simplicity).

Transition to Adult Care

Factors Contributing to Successful Transition

  • Health Provider Communication:

    • Clear communication between pediatric and adult care providers during transitions between institutions.

  • Transition Planning:

    • Introduction of a structured, long-term approach to ensure proper transitioning over years rather than months.

  • Involvement of Stakeholders:

    • Include family, main caregiver, and general practitioners (GPs) in the transition process.

  • Encouragement of Young Person's Involvement:

    • Foster young people's participation in health care decision-making.

  • Local Transition Case Manager:

    • Designate a facilitator for each young person transitioning.

  • Resources Accessibility:

    • Provide practical resources (checklists, contact information, etc.) to ease the transition process.

  • Timing Considerations:

    • Be mindful of other critical life events during the transition period.

  • Maintaining Contact:

    • Ensure ongoing connection and support post-transition.

Burns

Emergency Care

  • Immediate Steps:

    • STOP the burning process.

    • Assess the victim’s condition, cover the burn, and provide reassurance.

  • History Collection:

    • Time and place of burn incident.

    • Type of burn: thermal, electrical, chemical (substance involved), radiation, or friction.

    • First aid provided and status of other injuries.

    • Review immunization status (e.g., tetanus).

Management of Major Burns

  • Key Management Aspects:

    • Establish and maintain airway integrity.

    • Calculate and initiate fluid replacement therapy.

    • Evaluate and treat wounds using dressing techniques, pain management strategies, and nutritional support.

  • Performance of Ongoing Management:

    • Monitor wound healing strategies (dressings, topical agents, temporary and permanent skin coverings).

    • Implement psychosocial support frameworks for both child and family, along with comfort measures and nutritional considerations.

IV Fluid Management for Burns

  • Goals of IV Fluid Therapy:

    • Rehydrate children with substantial burns (total burn surface area - TBSA):

    • Children under 18 months: 8% TBSA and over.

    • Children over 18 months: 10% TBSA and over.

    • Ensure adequate perfusion to viable tissues and maintain organ functionality, monitored by urine output.

  • Fluid Replacement Calculations:


    • ext{Volume required for fluid replacement} = ext{% TBSA} imes ext{weight (in kg)} imes 2 mL

    • Adjust calculated volumes based on continuous assessments.

    • Administer the calculated volume using Hartmann’s solution: 50% within the first 8 hours, remaining 50% over the next 16 hours.

References

  • Fraser, J., Waters, D., Forster, E. and Brown, N. (2022). Paediatric Nursing in Australia and New Zealand (3rd Ed). Cambridge University Press.

  • Speedie, L. and Middleton, A. (2019). Wong’s Nursing care of Infants and Children Australia and New Zealand Edition- For Students. Elsevier.