COMPREHENSIVE PALLIATIVE CARE: SPOUSAL CAREGIVERS OF HEART FAILURE PATIENTS

描述(由申请者提供)：近500万美国人患有心力衰竭，每年有55万人新诊断(AHA，2005)。在确诊的第一年内，30%-50%将死亡，而在65岁或以下的男性中，80%将在确诊后8年内死亡。然而，只有不到10%的人获得了基本医疗以外的支持性服务。我们的长期目标是测试一种以女性配偶照顾者为重点的姑息护理模式的实用性，通过开发个性化的、需求驱动的、分阶段的干预方案来支持这些关键合作伙伴为心力衰竭患者提供高质量的护理，并将在未来的研究中进行测试。具体目标是：1)描述女性配偶照顾者在心力衰竭结束前的慢性渐进性衰退阶段的姑息护理需求；2)确定女性配偶照顾者认识到心力衰竭诊断的严重性，从而认识到症状管理以外的姑息护理服务的必要性和接受度的关键转折点；以及3)完善/扩展女性配偶照顾者的姑息护理模式，将已知和新确定的干预措施纳入特定阶段、需求导向的干预方案中。为了达到这些目标，我们将首先使用扎根理论的方法，验证我们的理论模型与这些女性配偶照顾者的经验的契合性；然后，通过描绘可以通过姑息关怀服务解决的未满足的护理需求来扩展模型。约35名女性护理员将接受采访。最初，将对配偶去世后的女性进行10次回顾性访谈；然后将招募25名活跃的照顾者，并在为期一年的时间里每月对其进行访谈，以捕捉照看和心力衰竭的动态性质。通过整合现有文献中的更多数据和对心力衰竭、姑息治疗和生命终结的医疗管理专家的小组访谈，改进后的模型将扩展到更全面的水平。从这个全面的模型中，将制定一个干预方案，根据行为和语言线索，规定需求驱动的、特定阶段的干预措施概要。该项目将通过确定向非正式配偶照顾者提供全面姑息护理服务的战略来促进国家的公共卫生，这些非正式配偶照顾者为数百万因心力衰竭而生活和死亡的美国人提供重要支持。

DESCRIPTION (provided by applicant): Nearly 5 million Americans live with heart failure with 550,000 newly diagnosed each year (AHA, 2005). Within the first year of diagnosis 30%-50% will die, and among men aged 65 or younger, 80% will be dead within 8 years of diagnosis. Yet, less than 10% are offered supportive services beyond basic medical care. Our long-term goal is to test the utility of a model of palliative care, focusing on female spousal caregivers, to support these pivotal partners in providing high quality care to those living with and dying from heart failure by developing an individualized, need-driven, phase-specific intervention protocol that will be tested in future studies. The specific aims are: 1) to delineate palliative care needs of female spousal caregivers during the phases of chronic, progressive decline preceding the end of life in heart failure; 2) to identify the critical transition point at which female spousal caregivers recognize the severity of the diagnosis of heart failure and thus acknowledge the need for and acceptance of palliative care services beyond symptom management, and 3) to refine/extend the model of palliative care for female spousal caregivers to include known and newly identified interventions in a phase-specific, needs-directed intervention protocol. In order to meet these aims, we will use methods of grounded theory first, to verify the fit of our theoretical models with the experiences of these female spousal caregivers; then, to extend the model by delineating unmet care needs that could be addressed through palliative care services. Approximately 35 female caregivers will be interviewed. Initially, 10 retrospective interviews will be done with women following the death of their spouses; then 25 active caregivers will be recruited and interviewed monthly for one year to capture the dynamic nature of both caregiving and heart failure. The refined model will be extended to a more comprehensive level by integrating additional data from extant literature and small group interviews with experts in medical management of heart failure, palliative care, and end of life. From this comprehensive model, an intervention protocol that prescribes a compendium of need-driven, phase-specific interventions, based on behavioral and verbal cues will be developed. This project will contribute to the public health of the nation by identifying strategies for providing comprehensive palliative care services to informal spousal caregivers who provide significant support to the millions of Americans living and dying with heart failure.