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Development of nursing care guidelines for the families living with a patient with an intractable disease

制定疑难杂症患者家属护理指南

基本信息

批准号：
16390644
负责人：
NOJIMA Sayumi
金额：
$ 4.54万
依托单位：
Kochi Women's University
依托单位国家：
日本
项目类别：
Grant-in-Aid for Scientific Research (B)
财政年份：
2004
资助国家：
日本
起止时间：
2004 至 2006
项目状态：
已结题

来源：
https://kaken.nii.ac.jp/grant/KAKENHI-PROJECT-16390644/
关键词：
patient with an intractable disease the family empowerment nursing care guidelines family nursing ケアガイドライン看護介入看護難病介護

项目摘要

Nursing care guidelines for families living with a patient with an intractable disease were developed based on the family empowerment nursing model. Among the numerous intractable diseases, guidelines were developed for the following intractable neuropathies: intractable neurological disease, ALS, Parkinson's disease, and spinocerebellar degeneration.The guidelines were refined in several stages by interviewing nurses who care for patients with intractable disease and are researchers involved with family nursing. Additionally, by listing two examples for each disease, the usage of the care guidelines was established, and guidelines for clinical settings were developed.The guidelines consist of the following three sections: family assessment and image formation; family assistance; and family intervention. The focus of family assessment is to ascertain each family's perception of the disease; emotional reactions; needs; and relationship with the disease. Family assessment is a process in which an image of each family is created by evaluation based on the above information.Furthermore, nurses should intervene with families living with a patient with an intractable disease through the following activities: improving families' activities of daily living and self-care ability; providing emotional support to families; educating families; improving families' coping behaviors and ability; activating family interactions and communication; adjusting family roles; utilizing relatives and social resources effectively; assisting families with meeting developmental goals; assisting families with managing family crises; assisting families with decision making; and empowering families.

以家庭增能护理模式为基础，针对一位难治性疾病患者的家属制定护理指引。在众多的难治性疾病中，针对难治性神经系统疾病、ALS、帕金森病、脊髓小脑变性等难治性神经系统疾病制定了指南，并通过对难治性疾病患者的护理人员和家庭护理研究人员的访谈，分几个阶段对指南进行了完善。此外，通过列举每种疾病的两个例子，建立了护理指南的使用，并制定了临床设置的指南。该指南包括以下三个部分：家庭评估和形象形成;家庭援助;和家庭干预。家庭评估的重点是确定每个家庭对疾病的看法、情绪反应、需要以及与疾病的关系。家庭评估是根据上述信息对家庭进行评价，塑造家庭形象的过程，护理人员应通过改善家庭日常生活能力和自理能力、提供情感支持、教育家庭、改善家庭应对行为和能力、提高家庭应对能力等措施对难治性疾病患者的家庭进行干预。促进家庭互动和沟通;调整家庭角色;有效利用亲属和社会资源;协助家庭实现发展目标;协助家庭管理家庭危机;协助家庭决策;增强家庭权能。