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体经历着复杂的需求，从身体护理到应对角色和意义的存在问题。生活在对治愈的希望和对死亡的认识之间的界限中，晚期疾病患者平衡了生存和生命完成的任务。医疗保健系统本身也沿着同样的轴线划分，对那些努力整合这些任务的人提供的指导很少。病人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，在糖尿病和高血压等疾病中得到了普及。它为患者提供了与其提供者的合作关系，改善了临床显著的结果，并且可能具有成本效益。然而，很少有研究探索晚期疾病的自我管理。本计划计划拨款旨在探索这一概念如何改善患有限制生命的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学、情感和角色组成部分的干预措施。第一项研究，“非正式癌症护理的自我效能增强训练”，利用一个可教的时刻来培训护理人员在家庭症状管理方面的能力。第二项研究，“等待肝移植患者的不确定性管理干预”，帮助这些患者在情绪上应对不确定性的压力。最后一项研究“展望：改善重病患者生活质量的干预”测试了一种方法，鼓励重病患者考虑准备和生命完成的角色问题。我们将通过数据收集、管理和定性分析核心在所有三项研究之间创造协同效应，该核心将整合所有研究数据的管理，并开展两个定性研究项目，解决交叉问题。第一项研究将采访一组来自我们国家癌症研究所资助的Pathways研究的丧亲照护者，以了解更多关于与限制生命的疾病生活的挑战，并确定在他们所爱的人的疾病过程中什么时候自我管理干预是受欢迎的。第二项研究将采访每项研究的受试者，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干预，并进一步发展限制生命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.