Able-Boone H, Stevens E
School of Education, University of North Carolina, Chapel Hill 27599.
Child Health Care. 1994 Spring;23(2):99-114. doi: 10.1207/s15326888chc2302_3.
This article describes family well being after a child's intensive care nursery experience. Thirty families of children who were graduates of intensive care nurseries participated in the study. Fifteen families of children with identifiable disabilities and 15 families of children with no identifiable disabilities were interviewed and completed standardized questionnaires. A comparison of family well being was done across three dimensions: the child's characteristics and caregiving needs, the family's support resources and needs, and the family's values and beliefs regarding their child's hospitalization and resulting special needs. Both groups of families had realized a renewed sense of meaning concerning family, children, and life itself due to their child's medical crises or disability. Families of children with disabilities, however, noted their financial concerns, burdens with their child's caregiving, and their difficulty in locating services for their child. These families' experiences underscore the need for a coordinated transition from the hospital to the community for the family and child.
本文描述了儿童在重症监护病房经历后的家庭幸福感。三十个曾有孩子在重症监护病房接受治疗的家庭参与了这项研究。对十五个孩子有明确残疾的家庭和十五个孩子无明确残疾的家庭进行了访谈，并让他们填写标准化问卷。从三个维度对家庭幸福感进行了比较：孩子的特征和护理需求、家庭的支持资源和需求，以及家庭对孩子住院及由此产生的特殊需求的价值观和信念。两组家庭都因孩子的医疗危机或残疾，对家庭、孩子和生活本身有了新的意义感。然而，残疾儿童家庭指出了他们对经济的担忧、照顾孩子的负担，以及为孩子寻找服务的困难。这些家庭的经历凸显了家庭和孩子从医院到社区进行协调过渡的必要性。
