Navigating Medical Complexity
Along this journey you will likely encounter moments of great hope and joy, and others when you will feel frustrated, scared, lonely. With some of these experiences and feelings will come challenging moments for you and others who want to support you. Here you will find information and ideas to help you cope, with insights from others to guide and support you in being your child’s #1 Advocate.
Each child is unique, and you may find yourself having some of these experiences earlier or later, or not at all. You can keep track of your thoughts and questions in this special worksheet.
Orienting
Collecting information and building a foundation of support as your journey begins.
Navigating
Maximizing resiliency and making decisions that work for your child and family.
Moving Forward
Adapting to your child’s evolving baseline and re-orienting your goals.
Orienting
Navigating
Moving Forward
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Diagnosis
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Neonatal Intensive Care
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Hope
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Goals of Care
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Anticipatory Grief
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Family and Community
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Spirituality and Religion
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Working with the Care Team
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Interventions
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Caregiver Well-being
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Baseline
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Guilt and Regret
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Family Planning
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Work
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Financial Planning
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Travel
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Clinical Trial
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Advance Care Planning and End of Life
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Transition to Adulthood
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Out-of-Home Placement
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Making Memories
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Bereavement
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Diagnosis
-
Neonatal Intensive Care
-
Hope
-
Goals of Care
-
Anticipatory Grief
-
Family and Community
-
Spirituality and Religion
-
Working with the Care Team
-
Interventions
-
Caregiver Well-being
-
Baseline
-
Guilt and Regret
-
Family Planning
-
Work
-
Financial Planning
-
Travel
-
Clinical Trial
-
Advance Care Planning and End of Life
-
Transition to Adulthood
-
Out-of-Home Placement
-
Making Memories
-
Bereavement
