Providing Hospice Care for Children: An Organizational Study

为儿童提供临终关怀：一项组织研究

• 批准号: 8069078
• 负责人: Lisa C. Lindley
• 金额: $ 4.25万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-09-30 至 2011-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8069078
• 关键词: Providing; Hospice; Care; Children; Organizational

DESCRIPTION (provided by applicant): Providing Hospice Care for Children: An Organizational Study It is estimated that approximately 90% of children who may benefit from hospice care never receive it, and as few as 40% of hospice organizations such as community-based hospice and home health agencies offer care to children. Yet, little is known about the organizations that provide hospice care to children, although they are a critical determinant to access of hospice care. Even though the physical and psychosocial benefits of using hospice care are well-supported in the literature, children's' lack of access to hospice care is a cause for concern. However, fundamental knowledge about hospice organizations that provide care to children is lacking. We do not know where care is provided by hospice organizations, the types of organizations providing hospice care to children, and the types of services offered to children and their families, and how these may have changed over time. This is increasingly important given the trend of terminally ill children returning home to die. Improving our understanding of hospice organizations is critical to expanding access to hospice care for children. In addition, there is emerging evidence that institutional pressures faced by hospice organizations may influence whether care is provided to children. At the same time, hospice organizations face financial performance pressures to generate revenues and manage expenses related to high-cost patient populations such as children. These institutional and financial pressures can conflict and affect whether or not hospice organizations provide care to children. In our dynamic health care environment, these relationships can change over time. Understanding the relationships between institutional and financial pressures and their impact on provision of care to children is critical to expand access to hospice care. Therefore, the proposed study seeks to describe the provision of hospice care to children, and to examine the effects of institutional forces and financial performance on provision of hospice care to children while controlling for organizational and market factors. This study will employ a retrospective, longitudinal design that utilizes data from the California hospice and home health agencies between the years 2002 through 2008. The unit of analysis is the hospice organization. Two analyses will be conducted: one descriptive analysis, one multivariate generalized estimating equations (GEE) regression analysis. By investigating hospice care for children, this study will target an AHRQ priority population, and address the AHRQ strategic goal of improving access to care. This study will have significant policy relevance and impact. The findings of the proposed organizational study will inform the development of policies aimed at expanding access and delivery of hospice care for children. Therefore, understanding and improving access to hospice care will offer terminally ill children and their families the opportunity to receive comprehensive and individualized care that promotes comfort, peace, and dignity at the end of life. PUBLIC HEALTH RELEVANCE: This study will have significant policy relevance and impact, as several states have debated eliminating hospice care from Medicaid programs, while others have trimmed services and delayed payments; and as unemployment worsens, more families are losing their employer-sponsored health insurance, including hospice benefits (Holahan & Garrett, 2009; Johnson et al., 2008; Johnson et al., 2010; Tuch, 2009). These changes create an uncertain funding environment for hospice organizations, especially for those that provide care for children. The findings of the proposed organizational study can inform the development of policies aimed at expanding access and delivery of hospice care for children.

描述（由申请人提供）：为儿童提供临终关怀：一项组织研究据估计，大约90%的儿童谁可能受益于临终关怀从来没有得到它，只有40%的临终关怀组织，如社区临终关怀和家庭健康机构提供照顾的儿童。然而，人们对为儿童提供临终关怀的组织知之甚少，尽管它们是获得临终关怀的关键决定因素。尽管文献充分支持使用临终关怀的身体和心理社会益处，但儿童缺乏临终关怀是一个令人关切的问题。然而，缺乏有关为儿童提供护理的临终关怀组织的基本知识。我们不知道临终关怀组织在哪里提供护理，为儿童提供临终关怀的组织类型，以及为儿童及其家庭提供的服务类型，以及这些服务如何随着时间的推移而变化。鉴于患绝症的儿童回家等死的趋势，这一点越来越重要。提高我们对临终关怀组织的理解对于扩大儿童临终关怀的可及性至关重要。此外，有新的证据表明，临终关怀组织面临的机构压力可能会影响是否为儿童提供护理。与此同时，临终关怀组织面临着财务业绩压力，以创造收入和管理与儿童等高成本患者群体相关的费用。这些机构和财政压力可能会发生冲突，并影响临终关怀组织是否为儿童提供护理。在我们动态的医疗保健环境中，这些关系可能会随着时间的推移而变化。了解机构和财政压力之间的关系及其对向儿童提供护理的影响，对于扩大临终关怀至关重要。因此，拟议的研究旨在描述提供临终关怀的儿童，并检查机构力量和财务业绩的影响，同时控制组织和市场因素提供临终关怀的儿童。本研究将采用回顾性纵向设计，利用2002年至2008年期间来自加州临终关怀和家庭健康机构的数据。分析的单位是临终关怀组织。将进行两项分析：一项描述性分析，一项多变量广义估计方程（GEE）回归分析。通过调查儿童临终关怀，这项研究将针对AHRQ的优先人群，并解决AHRQ的战略目标，改善获得护理。这项研究将具有重大的政策相关性和影响。拟议的组织研究的结果将为制定旨在扩大儿童临终关怀的获得和提供的政策提供信息。因此，了解和改善临终关怀的可及性将为绝症儿童及其家人提供机会，以获得全面和个性化的护理，促进生命结束时的舒适，和平和尊严。 公共卫生关系：这项研究将具有重大的政策相关性和影响，因为几个州正在讨论从医疗补助计划中取消临终关怀，而其他州则削减了服务并推迟了付款;随着失业率的上升，更多的家庭失去了雇主赞助的医疗保险，包括临终关怀福利（Holahan &加勒特，2009年;约翰逊等人，2008;约翰逊等人，2010; Tuch，2009）。这些变化为临终关怀组织创造了一个不确定的资金环境，特别是那些为儿童提供护理的组织。拟议的组织研究的结果可以为制定旨在扩大儿童临终关怀的获得和提供的政策提供信息。