Garwick A W, Kohrman C, Wolman C, Blum R W
University of Minnesota, School of Public Health, Maternal and Child Health Program, Minneapolis 55455, USA.
Arch Pediatr Adolesc Med. 1998 May;152(5):440-8. doi: 10.1001/archpedi.152.5.440.
Little research has been done on services and programs for children with chronic conditions and their families from the perspective of family caregivers from diverse cultural backgrounds.
To identify recommendations that urban caregiving families from 3 major ethnocultural backgrounds have for improving the care of children with chronic conditions (ie, chronic illnesses and disabilities involving physical health impairments).
Qualitative, community-based study.
General community.
The volunteer convenience sample included 21 African American, 20 Hispanic, and 22 European American families from 2 midwestern cities who care for school-aged children with chronic conditions.
In-home semistructured interviews were conducted with each child's family caregivers. Content analytic techniques were used to identify and classify 275 recommendations from 63 families.
Families focused on the following 4 topics: (1) improving the quality of health care services; (2) decreasing barriers to services and programs; (3) improving the training that health care professionals, families, and the public receive about chronic conditions and their management; and (4) improving the quality and availability of community-based services. Families from all 3 ethnic groups had similar recommendations for improving services and programs; however, several African American and Hispanic families also suggested making information more culturally relevant and resources more accessible to families from diverse cultural backgrounds.
The findings indicate that further work needs to be done to deliver care that is, indeed, family centered and culturally sensitive. Families' recommendations provide information that health care professionals and policymakers can use to transform rhetoric about family-centered care into action.
从不同文化背景的家庭照顾者角度，针对慢性病患儿及其家庭的服务和项目开展的研究较少。
确定来自3种主要种族文化背景的城市照顾家庭对改善慢性病患儿（即涉及身体健康损害的慢性疾病和残疾）护理的建议。
基于社区的定性研究。
一般社区。
志愿者便利样本包括来自中西部2个城市的21个非裔美国家庭、20个西班牙裔家庭和22个欧裔美国家庭，这些家庭照顾患有慢性病的学龄儿童。
对每个孩子的家庭照顾者进行入户半结构化访谈。采用内容分析技术对63个家庭的275条建议进行识别和分类。
家庭关注以下4个主题：（1）提高医疗服务质量；（2）减少服务和项目的障碍；（3）改善医疗保健专业人员、家庭和公众接受的有关慢性病及其管理的培训；（4）提高社区服务的质量和可及性。所有3个种族群体的家庭对改善服务和项目都有类似的建议；然而，一些非裔美国人和西班牙裔家庭还建议使信息更具文化相关性，并使来自不同文化背景的家庭更容易获得资源。
研究结果表明，需要进一步努力提供真正以家庭为中心且具有文化敏感性的护理。家庭的建议提供了医疗保健专业人员和政策制定者可用于将以家庭为中心的护理理念转化为行动的信息。
