Addressing the unique needs and quality of life issues for adults receiving long‐term home enteral nutrition

Abstract Individuals who require home enteral nutrition (EN)—and, subsequently, their families—undergo major changes in family dynamics. They would benefit from an approach that provides ongoing nutrition, hydration, enteral access, and quality of life assessments from knowledgeable clinicians. Most individuals and families will be new to the enteral access device, handling and administration of the nutrition formula, medication delivery through feeding tubes, and troubleshooting associated complications. Educational sessions are typically given but may not be comprehensive enough to meet all needs, especially in the first weeks to months of home EN therapy. Quality of life assessments obtained in the early stages of EN support would help clinicians identify and focus on areas that need special attention for that individual and family. Ongoing clinical care is essential because over time, the nutrition prescription, delivery methods and schedules typically require alterations and feeding tubes need to be assessed and replaced. In addition to these important physical dimensions of care, attention should be placed on the psychological, cognitive, social, and ethical aspects of life for these individuals and their families.