Caicedo Carmen
Undergraduate Nursing Department, Nicole Wertheim College of Nursing and Health Sciences, Florida International University, Miami, FL.
J Dev Behav Pediatr. 2015 Jun;36(5):352-61. doi: 10.1097/DBP.0000000000000167.
To examine and compare child and parent or guardian physical and mental health outcomes in families with children with special health care needs who have medically complex technology-dependent needs in home care, long-term care (LTC), and medical day care (MDC) settings. The number of children requiring medically complex technology-dependent care has grown exponentially. In this study, options for their care are home care, LTC, or MDC. Comparison of child and parent/guardian health outcomes is unknown.
Using repeated measures data were collected from 84 dyads (parent/guardian, medically complex technology-dependent child) for 5 months using Pediatric Quality of Life Inventory Generic Core Module 4.0 and Family Impact Module Data analysis: χ(2), RM-ANCOVA.
There were no significant differences in overall physical health, mental health, and functioning of children by care setting. Most severely disabled children were in home care; moderately disabled in MDC; children in vegetative state LTC; however, parents perceived children's health across care setting as good to excellent. Parents/guardians from home care reported the poorest physical health including being tired during the day, too tired to do the things they like to do, feeling physically weak, or feeling sick and had cognitive difficulties, difficulties with worry, communication, and daily activities. Parents/guardians from LTC reported the best physical health with time and energy for a social life and employment.
Trends in health care policy indicate a movement away from LTC care to care in the family home where data indicate these parents/guardians are already mentally and functionally challenged.
研究并比较在家庭护理、长期护理（LTC）和医疗日托（MDC）环境中，有特殊医疗需求且依赖复杂医疗技术的儿童及其父母或监护人的身心健康状况。需要依赖复杂医疗技术护理的儿童数量呈指数增长。在本研究中，其护理选择包括家庭护理、长期护理或医疗日托。儿童与父母/监护人健康状况的比较尚不清楚。
采用重复测量法，使用儿童生活质量量表通用核心模块4.0和家庭影响模块，对84对（父母/监护人、依赖复杂医疗技术的儿童）进行为期5个月的数据收集。数据分析：χ(2)、重复测量方差分析。
不同护理环境下儿童的总体身体健康、心理健康和功能方面无显著差异。大多数重度残疾儿童接受家庭护理；中度残疾儿童在医疗日托；处于植物人状态的儿童接受长期护理；然而，父母认为不同护理环境下孩子的健康状况良好至极佳。来自家庭护理的父母/监护人报告的身体健康状况最差，包括白天疲惫、疲惫到无法做自己喜欢的事情、身体虚弱、感觉不适以及有认知困难、担忧、沟通和日常活动方面的困难。来自长期护理的父母/监护人报告的身体健康状况最佳，有时间和精力参与社交生活和工作。
医疗保健政策的趋势表明，护理正从长期护理转向家庭护理，但数据显示这些父母/监护人在心理和功能上已经面临挑战。
