Wang Kai-Wei Katherine, Barnard Alan
School of Nursing, Faculty of Health, Queensland University of Technology, Kelvin Grove, Queensland, Australia.
J Adv Nurs. 2004 Jan;45(1):36-46. doi: 10.1046/j.1365-2648.2003.02858.x.
Advances in medical technology and nursing care have enabled children who rely on long-term medical and technical support to reunite with their families and community. The impact of discharging these children into the community involves a number of unprecedented social implications that warrant policy consideration. To begin with, an effort must be made to understand the phenomenon of caring for technology-dependent children living at home.
The aim of this paper is to provide a comprehensive literature review on caring for technology-dependent children living at home.
The review was conducted via keyword searches using various electronic databases. These included CINAHL, MEDLINE, Social Science Index, Sociological Abstracts, Australian Family and Society Abstracts, and the Australian Bureau of Statistics. The articles and books found were examined for commonality and difference, significant themes were extracted, and the strength of the research methods and subsequent evidence were critiqued.
In this paper, themes relating to home care for technology-dependent children and their families are elucidated and summarized. These are: chronic illness and children; the impact of paediatric home care on children; the uniqueness of technology-dependent children and their families; and parents' experience of paediatric home care.
Contentious issues, relevant to the social life of these children and their families, are raised and are discussed with the intention of extending awareness and provoking further debate among key stakeholders. These issues include: the changed meaning of home; family dynamics; social isolation; saving costs for whom?; shifts in responsibility; and parent-professional relationships.
More research is needed in the arena of paediatric home care, to facilitate relevant policy formation and implementation.
医疗技术和护理的进步使那些依赖长期医疗和技术支持的儿童能够与家人和社区团聚。将这些儿童送回社区所产生的影响涉及一些前所未有的社会问题,值得政策层面的考量。首先,必须努力去了解在家照顾依赖技术的儿童这一现象。
本文旨在对在家照顾依赖技术的儿童进行全面的文献综述。
通过使用各种电子数据库进行关键词搜索来开展综述。这些数据库包括护理学与健康领域数据库(CINAHL)、医学期刊数据库(MEDLINE)、社会科学索引、社会学摘要、澳大利亚家庭与社会摘要以及澳大利亚统计局数据库。对所找到的文章和书籍进行共性与差异分析,提取重要主题,并对研究方法的优势及后续证据进行评判。
本文阐明并总结了与在家照顾依赖技术的儿童及其家庭相关的主题。这些主题包括:慢性病与儿童;儿科家庭护理对儿童的影响;依赖技术的儿童及其家庭的独特性;以及父母对儿科家庭护理的体验。
提出了与这些儿童及其家庭社会生活相关的有争议问题,并进行讨论,目的是提高认识并引发关键利益相关者之间的进一步辩论。这些问题包括:家的意义变化;家庭动态;社会隔离;为谁节省成本?;责任转移;以及家长与专业人员的关系。
儿科家庭护理领域需要更多研究,以促进相关政策的制定和实施。