Balancing Hope & Truth-Telling for Patients with Ca/COPD

描述（由研究者提供）：患有绝症或限制生命疾病的患者报告说，他们强烈需要保持希望，希望自己能战胜疾病，同时，他们希望完全了解自己的诊断和预后。这两个目标，保持希望和了解一个人的生存和生活质量的预后的真相，往往是难以调和的临床医生。临终关怀专家呼吁临床医生将患者的希望从对治愈的希望转向对预后不良的生活质量和死亡质量的希望。然而，没有数据可以帮助临床医生知道如何给垂死的病人带来希望，同时提供准确的预后信息。本研究将探讨晚期癌症和慢性阻塞性肺疾病（COPD）患者、他们的家人和他们的医疗保健提供者对希望的需求和对预后真实信息的需求之间经常存在的冲突的看法。我们将对患者、家属、护士和医生进行一系列开放式访谈。访谈将由经过培训的定性研究人员在12个月内连续进行，并由调查人员使用扎根理论的原则进行分析。此外，将在同一时间点对参与者进行定量调查，以提供描述性信息并允许对定性数据进行构建验证。将选择代表文化和种族多样性观点的参与者，分析将纳入这种多样性。最后，研究结果将提交给焦点小组，以评估分析的可信度，并提高研究结果的普遍性。本研究的总体目标是为临床医生制定策略，在限制生命的疾病的整个过程中，支持患者对希望和真实的双重需求。这些策略将被描述并转化为针对为癌症、慢性阻塞性肺病和其他限制生命的疾病患者提供护理的护士、医生和团队的干预措施。

DESCRIPTION (provided by investigator): Patients with terminal or life-limiting illness report a strong need to maintain hope that they will overcome their illness while, at the same time, they desire full disclosure about their diagnosis and prognosis. These two goals, to maintain hope and know the truth about one's prognosis for survival and quality of life, are often difficult for clinicians to reconcile. Experts in end-of-life care call for clinicians to redirect patients' hope from hope for cure toward hope for quality of life and quality of dying when prognosis is poor. However, there are no data that help clinicians know how to offer hope and simultaneously provide accurate prognostic information to dying patients. This proposed study would examine the perspectives of patients with terminal cancer and chronic obstructive pulmonary disease (COPD), their families, and their health care providers concerning the often-perceived conflict between the need for hope and the need for truthful information about prognoses. We will conduct a series of open-ended interviews with patients, family members, nurses, and physicians. Interviews will be conducted by trained qualitative researchers serially over a twelve-month period and will be analyzed by the investigators using the principles of grounded theory. In addition, quantitative surveys will be conducted with participants at the same time points to provide descriptive information and permit construct validation of the qualitative data. Participants will be selected to represent culturally and ethnically diverse perspectives and analyses will incorporate this diversity. Finally, the findings will be presented to focus groups to assess the trustworthiness of the analyses and improve generalizability of the findings. The overall objective of this study is to develop strategies for clinicians to use throughout the course of a life-limiting disease to support patients in their dual needs for hope and truthfulness. These strategies will be described and translated into interventions targeting nurses, physicians, and teams who provide care for patients with cancer, COPD, and other life-limiting diseases.