Patterson J M, Leonard B J, Titus J C
School of Public Health, University of Minnesota, Minneapolis 55455.
J Dev Behav Pediatr. 1992 Aug;13(4):248-55.
The health status of 48 families providing home care for their medically fragile children was studied. Mothers, as the primary caregivers, experienced a greater decline in their physical health than did fathers or siblings. When the financial burden of providing care was greater and when the relationship with care providers was more strained, families had more physical illness symptoms. Who provided home care services for the medically fragile child influenced the psychosocial impact on the family. Care provided by home health aides was associated with greater negative impact, whereas care from professional nurses reduced the negative impact. The trend toward home care for medically fragile children has been accelerating; this study points to the importance of studying the impact on the family of this kind of care. Policy implications regarding the amount and quality of services and payment for them are discussed.
对48个为其患有医学复杂性疾病的孩子提供家庭护理的家庭的健康状况进行了研究。作为主要照顾者的母亲，其身体健康状况的下降程度比父亲或兄弟姐妹更大。当护理的经济负担更重以及与护理提供者的关系更紧张时，家庭出现的身体疾病症状更多。谁为患有医学复杂性疾病的孩子提供家庭护理服务会影响对家庭的心理社会影响。由家庭健康助理提供的护理会带来更大的负面影响，而专业护士提供的护理则减少了负面影响。为患有医学复杂性疾病的孩子提供家庭护理的趋势一直在加速；这项研究指出了研究此类护理对家庭影响的重要性。文中还讨论了有关服务数量和质量以及支付费用的政策含义。
