Lord Linda M, McGinnis Carol, Densmore Carly
Adult Nutrition Support Clinic, University of Rochester Medical Center, Rochester, NY, USA.
Sanford USD Medical Center, Center for Care Management, Sioux Falls, SD, USA.
Nutr Clin Pract. 2023 Apr;38(2):257-276. doi: 10.1002/ncp.10965.
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.
需要家庭肠内营养(EN)的患者及其家属,其家庭动态会发生重大变化。他们将受益于一种由知识渊博的临床医生提供持续营养、水合作用、肠内通路及生活质量评估的方法。大多数患者及其家属对肠内通路装置、营养配方的处理与管理、通过饲管给药以及相关并发症的故障排除都是陌生的。通常会举办教育课程,但可能不够全面,无法满足所有需求,尤其是在家庭EN治疗的最初几周至几个月。在EN支持的早期阶段获得的生活质量评估将有助于临床医生识别并关注该患者及其家庭需要特别关注的领域。持续的临床护理至关重要,因为随着时间的推移,营养处方、给药方法和时间表通常需要调整,并且需要对饲管进行评估和更换。除了这些重要的护理身体层面,还应关注这些患者及其家庭生活的心理、认知、社会和伦理方面。