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患有慢性健康问题儿童的家长:护理研究项目及其与发育科学的关系。

Parents of children with chronic health problems: programs of nursing research and their relationship to developmental science.

作者信息

Miles Margaret Shandor

出版信息

Annu Rev Nurs Res. 2003;21:247-77.

Abstract

This review identified nurse researchers and research teams that have current programs of research focused on parents and parenting of children with chronic health problems. Researchers were included if they had at least five publications since 1990, with at least three of these articles first-authored. These programs of research were critiqued from a developmental science perspective. Multiple methods were used for the search, including examination of previous review articles, hand search of journals, online computer searches, and review of the curriculum vitae of authors. Seven programs of research were identified. Two programs of research focused on childhood cancer--Ida M. Martinson et al. and Marsha H. Cohen. Three programs of research used a noncategorical approach encompassing a variety of childhood chronic conditions--Katherine A. Knafl and Janet A. Deatrick, Sharon O. Burke, and Ann Garwick. One program focused primarily on parents of children with Down syndrome and disabilities--Marsha Van Riper--and another on parents of infants with a variety of chronic health problems--Margaret S. Miles and Diane Holditch-Davis. Diverse theories and conceptual frameworks were used, and most had some focus on ecological systems that might affect parents and parenting. Many used a family perspective and included fathers. Still broader aspects of the family and community ecology and the health care were not generally included. Few examined the bidirectionality of the relationship between the child and aspects of the child's illness and parental responses. There was variability in the extent to which ethnicity and socioeconomic status were considered. Studies provide important insight into the responses of parents and their parenting of children with chronic health problems. The studies provide a sound base for continuing to build a developmentally sensitive body of knowledge related to parents and parenting of the child with chronic health problems.

摘要

本综述确定了一些护士研究人员和研究团队,他们目前有专注于患有慢性健康问题儿童的父母及养育问题的研究项目。如果研究人员自1990年以来至少有五篇出版物,且其中至少三篇文章为第一作者,则被纳入。这些研究项目从发展科学的角度进行了批判性分析。搜索采用了多种方法,包括查阅以前的综述文章、手工检索期刊、在线计算机搜索以及查阅作者的简历。共确定了七个研究项目。两个研究项目聚焦于儿童癌症——艾达·M·马丁森等人以及玛莎·H·科恩的项目。三个研究项目采用了非分类方法,涵盖了各种儿童慢性病——凯瑟琳·A·克纳夫和珍妮特·A·迪特里克、莎伦·O·伯克以及安·加维克的项目。一个项目主要关注唐氏综合征和残疾儿童的父母——玛莎·范·里珀的项目,另一个关注患有各种慢性健康问题婴儿的父母——玛格丽特·S·迈尔斯和黛安·霍尔迪奇 - 戴维斯的项目。研究使用了多样的理论和概念框架,且大多数都对可能影响父母及养育的生态系统有所关注。许多研究采用了家庭视角并纳入了父亲。但家庭和社区生态以及医疗保健更广泛的方面通常未被纳入。很少有研究考察儿童与儿童疾病各方面及父母反应之间关系的双向性。在考虑种族和社会经济地位的程度上存在差异。这些研究为了解父母对患有慢性健康问题儿童的反应及其养育方式提供了重要见解。这些研究为持续构建与患有慢性健康问题儿童的父母及养育相关的、对发展敏感的知识体系奠定了坚实基础。

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