Children are living longer with complex chronic medical conditions.

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(No Transcript)
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Introduction

• Children are living longer with complex chronic
  medical conditions.
• Multiple acute and chronic health crises create
  significant challenges for the child and family.

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Introduction (cont.)

• Symptom management for these children presents a
  unique challenge to health care providers.
• Interdisciplinary family-centered care is an
  integral part of the symptom management for a
  chronically ill child.

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Family Centered Care

• Family shapes types of interventions
• Illness experience
• QOL and sources of suffering
• Goals of care
• Curative/restorative
• Life prolongation
• Comfort

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Family Centered Care

• Parents as experts in their childs care
• Role of extended family, school, community

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Symptoms and Suffering

• Determine priority symptoms for the child
• Symptoms create suffering and distress
• Interdisciplinary care

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Key Nursing Roles

• Assessment
• Child/family advocacy
• Pharmacological treatments
• Non-drug treatments
• Child/family teaching

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Assessment and Management

• Identification as "terminal" may limit care
• Assess symptom onset, severity effect on
  quality of life
• Diagnostic Testing
• Not if but why

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Friendship Found
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Symptoms

• Neurological
• Respiratory
• GI symptoms
• Fatigue
• Hematological
• Psychological
• Spiritual