Self-Management Interventions in Life-Limiting Illness

描述（由申请人提供）：患有限制生命的疾病的个人经历了从身体护理到应对角色和意义的存在问题的复杂需求。生活在治愈的希望和死亡的认识之间的临界点，晚期疾病的患者平衡生存和生命完成的任务。医疗保健系统本身也是沿着沿着这些同样的轴线划分的，对那些努力整合这些任务的人几乎没有提供什么指导。患者可能会独自处理这些问题，导致痛苦增加和更糟糕的结果。自我管理是一种增强慢性病护理能力的方法，已在糖尿病和高血压等疾病中得到普及。它为患者提供了与其提供者的伙伴关系，改善了临床显著的结果，并可能具有成本效益。然而，很少有研究探讨了晚期疾病的自我管理。该计划项目赠款旨在探索这一概念如何改善患有生命限制性疾病的患者及其护理人员的生活。在三项研究中，我们将测试专注于自我管理的医疗，情感和角色组成部分的干预措施。第一项研究，增强非正式癌症护理的自我效能培训，”利用一个可教的时刻来培训家庭症状管理的护理人员。第二项研究，“等待肝移植患者的不确定性管理干预”，帮助这些患者在情感上科普不确定性的压力。最后一项研究，“展望：一项改善重病患者生活质量的干预措施”测试了一种鼓励重病患者考虑准备和生命完成的角色问题的方法。我们将通过数据收集，管理和定性分析核心，将整合所有研究数据的管理，并进行两个定性研究项目，解决跨领域的问题，创造所有三项研究之间的协同作用。第一个将采访一群来自NINR资助的Pathways研究的丧亲护理人员，以了解更多关于生活在限制生命的疾病中的挑战，并确定在他们所爱的人的疾病自我管理干预措施的过程中何时会受到欢迎。第二部分将采访每项研究的受试者，以了解他们对接受自我管理干预的反应。通过所有这些方法，我们希望了解何时以及如何进行干预，并进一步发展生命限制性疾病的自我管理理论。

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.