EOL Care Companion II

描述（由申请人提供）：美国的医疗保健系统依赖于大约5200万名非正式护理人员，他们在家中为生病或残疾的成年人提供护理。这些照顾者大多是家人或朋友，而不是有偿助理或志愿者。他们越来越多地照顾重病患者和那些患有严重威胁生命的疾病的人。随着预期寿命的延长，多年的慢性疾病导致死亡，“与死亡共存”的人数也在增加。家人和朋友被呼吁充当照顾者、倡导者和代理人，为那些即将走到生命尽头的亲人服务。为了应对这些挑战，家庭照顾者需要决策信息，技能教育，以管理提供临终关怀所涉及的许多任务，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，包括1)交互式多媒体资源，提供有关临终关怀和技能培训的专业审查信息，可通过CD ROM或在线提供；2)全面的在线服务，提供CD ROM /在线内容解析，用于定制访问（通过注册用户档案），用户生成内容（来自在线事件和用户贡献），以及点对点交互和社交。这种综合定制的教育和支持环境基于以下假设：1)信息更灵通的家庭成员将成为更好的照顾者；2)作为社会过程的一部分，学习得到加强；3)教育和支持的结合将增强照顾者的体验，减少其对照顾者的负面影响。通过支持家庭照护者，我们希望提高对接受照护者及其家庭的临终关怀质量。在线教育和同伴支持的结合将通过随机对照试验进行科学评估，以检验护理伴侣在减少护理不良影响方面的有效性。对照顾者的影响将包括他们的身体和心理健康状况的自我报告（SF 12）和他们对他们的处境的情绪反应（感知压力、应对、感知自我能力和孤独）。

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).