Mentro Anne M
Ohio State University College of Nursing, Columbus, OH 43210-1289, USA.
J Pediatr Nurs. 2003 Aug;18(4):225-32. doi: 10.1016/s0882-5963(03)00085-x.
Medically fragile children are part of a growing population of children with special health care needs (CSHCN) who are dependent on technology for survival. Despite the extensive care needs characteristic of this population, many medically fragile children are cared for in their homes. Caregivers for these children are faced with numerous tasks, including the daily care of their child as well as the coordination of vital services. Inadequate access to health care, little service availability, limited insurance, and financial restraints may further complicate caring for a medically fragile child in the home. Although federally funded programs such as Supplemental Security Income (SSI) and State Title V CSHCN programs may be beneficial for these children and their families, current policies may limit access to these necessary services. As patient advocates, nurses may be instrumental in assisting medically fragile children and their families to obtain much-needed programs and vital services.
医疗脆弱儿童是有特殊医疗保健需求的儿童群体（CSHCN）中不断增长的一部分，他们依靠技术维持生命。尽管该群体有广泛的护理需求，但许多医疗脆弱儿童在家中接受照料。这些儿童的照料者面临着众多任务，包括对孩子的日常护理以及重要服务的协调。获得医疗保健的机会不足、服务供应少、保险有限以及经济限制，可能会使在家照料医疗脆弱儿童的情况更加复杂。尽管诸如补充保障收入（SSI）和联邦政府第五类CSHCN项目等联邦资助项目可能对这些儿童及其家庭有益，但现行政策可能会限制获得这些必要服务的机会。作为患者权益倡导者，护士在协助医疗脆弱儿童及其家庭获得急需的项目和重要服务方面可能会发挥重要作用。
