Self-Management Interventions in Life-Limiting Illness

生命有限疾病的自我管理干预

• 批准号: 7690938
• 负责人: James A. Tulsky
• 金额: $ 67.09万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-09-23 至 2013-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7690938
• 关键词: Self; Management; Interventions; Life; Limiting

DESCRIPTION (provided by applicant): Individuals with life-limiting illness experience complex needs from physical care to coping with existential issues of role and meaning. Living in liminality between hope for cure and recognition of mortality, patients with advanced illness balance tasks of survivorship and life completion. The health care system, itself divided along these same axes, offers little guidance to those struggling to integrate these tasks. Patients may be left on their own to deal with such concerns, leading to increased distress and worse outcomes. Self-management is an empowering approach to chronic illness care that has gained popularity for diseases such as diabetes and hypertension. It offers patients partnership with their providers, has improved clinically significant outcomes, and may be cost effective. Yet few studies have explored self-management in advanced illness. This Program Project grant proposes to explore how this concept can improve the lives of patients with life-limiting illness and their caregivers. In three studies, we will test interventions that focus on the medical, emotional and role components of self management. The first study, Enhanced Self-Efficacy Training for Informal Cancer Care," exploits a teachable moment to train caregivers in home symptom management. The second study, "Uncertainty Management Intervention for Patients Waiting for a Liver Transplant" helps these patients cope emotionally with the stress of uncertainty. The final study, "OUTLOOK: An Intervention to Improve Quality of Life in Serious Illness" tests an approach that encourages seriously ill patients to consider role issues of preparation and life completion. We will create synergy among all three studies through a Data Collection, Management and Qualitative Analysis Core that will integrate management of all study data and conduct two qualitative research projects that address cross-cutting questions. The first will interview a cohort of bereaved caregivers from our NINR funded Pathways study to learn more about the challenges of living with life-limiting illness and to identify when in the course of their loved one's illness self-management interventions would have been welcome. The second will interview subjects from each of the studies to learn their response to receiving self-management interventions. Through all of these approaches, we hope to learn when and how to intervene and to further develop the theory of self-management in life-limiting illness.

描述（由申请人提供）：有生命疾病的人会体验到从身体护理到应对生存问题和意义问题的复杂需求。生活在治愈希望和对死亡率的认可之间，生存和生命完成任务之间的限制性。医疗保健系统本身沿着这些相同的轴线分裂，几乎没有为努力整合这些任务的人提供的指导。患者可能会独自解决此类问题，从而增加了痛苦和糟糕的结果。自我管理是一种赋予慢性病护理能力的方法，它因糖尿病和高血压等疾病而受欢迎。它为患者与他们的提供者的合作伙伴关系提供了改善的临床意义，并且可能具有成本效益。然而，很少有研究探讨了晚期疾病的自我管理。该计划项目赠款建议探讨该概念如何改善生命疾病及其护理人员的生活。在三项研究中，我们将测试侧重于自我管理的医学，情感和角色组成部分的干预措施。第一项研究，增强了非正式癌症护理的自我效能训练，“利用可教的时刻来培训护理人员在家庭症状管理中进行培训。第二项研究，“对等待肝脏移植的患者的不确定性管理干预”有助于这些患者在情感上应对不确定性的压力。最终的研究。最终的研究：“前景：一项对生活的质量”来促进生命的质量，以使自己的质量变得越来越不适，我们会努力锻炼生命，使我们的质量差异，我们会努力锻炼。通过数据收集，管理和定性分析核心在所有三项研究之间建立协同作用，该核心将整合所有研究数据的管理，并进行两个定性研究项目，以解决交叉问题的问题。第二个将采访每项研究的对象，以了解他们对接受自我管理干预措施的反应。通过所有这些方法，我们希望学习何时以及如何进行干预，并进一步发展生命疾病中的自我管理理论。