Childhood Onset Severe Neurological Impairment

Childhood Onset Severe Neurological Impairment (COSNI) presents clinicians and families with complex, high-stakes decisions at the intersection of medical intention and clinical possibility. This book addresses the uncertainty inherent in these decisions by offering a structured, evidence-based, and hypothesis-driven approach aimed at achieving the greatest possible certainty while minimizing decisional regret. Through an iterative framework for reflection and shared decision-making with parents and guardians, the text supports thoughtful, compassionate care for children with severe neurological impairment. Grounded in both scientific evidence and 27 years of clinical experience, the book emphasizes communication, resilience, and practical problem-solving to improve outcomes for children, families, and care teams.

Key Features

• Evidence-based and hypothesis-driven strategies to improve health outcomes and reduce decisional regret
• A practical framework for reflective, iterative decision-making with parents and guardians
• In-depth guidance for managing complex circumstances, including intractable symptoms, feeding intolerance, intestinal failure, and technology dependence
• Communication strategies embedded throughout the text and tailored to specific clinical challenges
• Tools to strengthen clinician and team resilience in the care of children with severe neurological impairment
• Clinically informed insights drawn from 27 years of professional experience
• Content designed to inform research initiatives and quality improvement projects, advancing standards of care