EOL Care Companion II

描述(由申请人提供)：美国医疗保健系统依赖于估计5200万非正式照顾者在家中为患病或残疾成年人提供护理。这些照顾者大多是家人或朋友，而不是受薪助手或志愿者。他们越来越多地照顾重病患者和那些不断发展的危及生命的疾病。随着预期寿命的延长，在多年的慢性病之后死亡，那些“与死亡共存”的人的数量也在增加。家人和朋友被号召成为即将走到生命尽头的亲人的照顾者、倡导者和代理人。为了应对这些挑战，家庭照顾者需要用于决策的信息、管理提供临终关怀所涉及的许多任务的技能教育以及情感支持。CARE Companion将提供由独立和“实时”组件组成的综合服务，其中包括：1)交互式多媒体资源，提供有关可通过CD-ROM或在线提供的有关临终关怀和技能培训的专业审查信息；2)全面的在线服务，提供CD-ROM/在线内容分析，以供定制访问(通过注册用户档案)、用户生成的内容(来自在线活动和用户贡献)以及点对点互动和社交。这种综合的定制教育和支持环境基于以下假设：1)消息灵通的家庭成员将成为更好的照顾者，2)学习作为社会进程的一部分得到加强，3)教育和支持的结合将改善护理体验，减少其对照顾者的负面影响。通过支持家庭照顾者，我们希望改善对照顾者及其家人的临终关怀质量。将使用随机对照试验对在线教育和同伴支持的组合进行科学评估，以检验关爱伴侣在减少关爱给予的不良影响方面的有效性。对照顾者的影响将包括对他们的身心健康状况的自我报告(SF 12)以及他们对所处情况的情绪反应(感觉到的压力、应对方式、感觉到的自我能力和孤独)。

DESCRIPTION (provided by applicant): The U.S. health care system depends on an estimated 52 million informal caregivers to provide care to ill or disabled adults in their homes. Most of these caregivers are family or friends, not paid assistants or volunteers. Increasingly, they are caring for the seriously ill and those with progressive life-threatening illness. As life expectancy rises, death comes after years of chronic disease and the numbers of those "living with dying" grows. Family and friends are called upon to act as caregivers, advocates, and proxies for loved ones who are approaching the end of life. To meet these challenges, family caregivers need information for decision making, skills education to manage the many tasks involved in providing end-of-life care, and emotional support. Care Companion will offer an integrated service consisting of standalone and "live" components, including 1) interactive multimedia resource that provides professionally reviewed information on end-of-life and skills training deliverable on CD ROM or online; 2) a comprehensive online service that provides the CD ROM / online content parsed for customized access (via registered user profiles), user-generated content (from online events and user contributions), and peer-to-peer interaction and sociability. This integrated customized education and support environment is based on the following assumptions: 1) better-informed family members will be better caregivers, 2) learning is enhanced as part of a social process, 3) the combination of education and support will enhance the care giving experience and reduce its negative effects on caregivers. By supporting family caregivers we hope to improve the quality of end-of-life care for care receivers and their families. The combination of online education and peer support will be scientifically evaluated using a randomized controlled trial to examine the effectiveness of Care Companion in reducing the adverse effects of care giving. Effects on caregivers will include self-report of their physical and mental well health (SF 12) and their emotional response to their situation (perceived stress, coping, perceived self-competency, and loneliness).