非正规照护者的认知：为多发性硬化症患者提供的健康和支持服务。

Perceptions of informal care givers: health and support services provided to people with multiple sclerosis.

机构信息

Department of Political Science and Public Administration, Mississippi State University, Mississippi State, USA.

出版信息

Disabil Rehabil. 2010;32(6):500-10. doi: 10.3109/09638280903171485.

DOI:10.3109/09638280903171485

PMID:19852704

Abstract

PURPOSE

About 30% of people with multiple sclerosis (MS) need some form of home care assistance, with 80% of that assistance provided by informal or unpaid care givers. This study focuses on the care givers to 530 more disabled people with MS, with the objective to learn more about informal care giving to people with greater dependency and need for assistance.

METHOD

The data presented in this study were collected in a national survey of 530 informal care givers to people with MS who have greater levels of physical dependency.

RESULTS

About 70% of informal care givers responded that assisting the person with MS perform daily activities or personal care took up the largest amount of their care giving time. Care givers also reported a range of home and community-based services that would make care giving easier or improve the care provided. However, informal care givers generally reported low satisfaction with health insurance coverage of these services, especially coverage by health maintenance organizations and other managed care plans.

CONCLUSIONS

Lack of health insurance coverage of needed home and community-based services can reduce the quality of informal care provided, as well as increase the burden of informal care giving.

摘要

目的

约 30%的多发性硬化症（MS）患者需要某种形式的家庭护理援助，其中 80%的援助由非正规或无报酬的护理人员提供。本研究重点关注 530 名残疾程度更高、更需要援助的 MS 患者的护理人员，旨在更多地了解对依赖程度更高、更需要援助的人的非正规护理情况。

方法

本研究中呈现的数据来自对 530 名为 MS 患者提供护理的非正规护理人员的全国性调查，这些患者身体依赖性更高。

结果

约 70%的非正规护理人员表示，帮助 MS 患者进行日常活动或个人护理占据了他们护理时间的大部分。护理人员还报告了一系列家庭和社区为基础的服务，这些服务可以使护理工作更容易或改善所提供的护理。然而，非正规护理人员普遍对医疗保险对这些服务的覆盖范围表示不满，尤其是对健康维护组织和其他管理式医疗计划的覆盖范围不满。