Providing Hospice Care for Children: An Organizational Study

描述(申请人提供)：为儿童提供临终关怀：一项组织研究估计，大约90%可能受益于临终关怀的儿童从未接受过临终关怀，只有少至40%的临终关怀组织，如社区临终关怀和家庭健康机构为儿童提供关怀。然而，人们对向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。尽管使用临终关怀的身体和心理社会益处在文献中得到了很好的支持，但儿童缺乏获得临终关怀的机会是一个令人担忧的问题。然而，缺乏关于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，不知道向儿童提供临终关怀的组织类型，不知道向儿童及其家人提供的服务类型，以及这些服务可能随着时间的推移而发生了什么变化。鉴于绝症儿童回国死亡的趋势，这一点变得越来越重要。增进我们对临终关怀组织的了解，对于扩大儿童获得临终关怀的机会至关重要。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向儿童提供护理。与此同时，临终关怀组织面临着创造收入和管理与高成本患者群体(如儿童)相关的费用的财务业绩压力。这些机构和财政压力可能会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改变。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，对于扩大获得临终关怀的机会至关重要。因此，拟议的研究试图描述向儿童提供临终关怀的情况，并在控制组织和市场因素的同时，审查体制力量和财务业绩对向儿童提供临终关怀的影响。这项研究将采用回溯性的纵向设计，利用2002年至2008年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，一项多元广义估计方程(GEE)回归分析。通过调查儿童的临终关怀，这项研究将针对AHRQ优先考虑的人群，并解决AHRQ的战略目标，即改善获得护理的机会。这项研究将具有重大的政策相关性和影响。拟议组织研究的结果将为制定旨在扩大儿童临终关怀机会和提供临终关怀的政策提供信息。因此，了解和改善获得临终关怀的机会将为绝症儿童及其家人提供机会，使他们有机会在生命末期接受全面和个性化的护理，促进舒适、和平和尊严。 公共卫生相关性：这项研究将具有重大的政策相关性和影响，因为几个州已经就取消医疗补助计划中的临终关怀展开了辩论，而其他州则削减了服务并推迟了支付；随着失业情况的恶化，越来越多的家庭失去了雇主资助的医疗保险，包括临终关怀福利(Holahan&Garrett，2009；Johnson等人，2008；Johnson等人，2010；Tuch，2009)。这些变化为临终关怀组织创造了不确定的资金环境，特别是对那些提供儿童护理的组织。拟议的组织研究结果可以为制定旨在扩大儿童临终关怀机会和提供临终关怀的政策提供参考。

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.