EOL Care Companion II

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).