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

描述（由研究者提供）：患有终末期或限制生命的疾病的患者报告强烈需要保持他们将战胜疾病的希望，同时他们希望充分披露其诊断和预后。 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，往往是临床医生难以调和。 临终关怀专家呼吁临床医生将患者的希望从治愈的希望转向生活质量的希望和预后不佳时的死亡质量。 然而，没有数据可以帮助临床医生知道如何提供希望，同时为垂死的患者提供准确的预后信息。 这项拟议的研究将检查晚期癌症和慢性阻塞性肺病（COPD）患者、他们的家人和医疗保健提供者对希望的需要和对有关预后的真实信息的需要之间经常被认为的冲突的看法。 我们将对患者、家属、护士和医生进行一系列开放式访谈。 访谈将由训练有素的定性研究人员在12个月内连续进行，并由研究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结构验证。 与会者的挑选将体现文化和族裔的多样性，分析将纳入这种多样性。 最后，将向重点小组介绍调查结果，以评估分析的可信度，并提高调查结果的普遍性。 本研究的总体目标是为临床医生制定策略，以在整个生命限制性疾病过程中使用，以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护士，医生和团队的干预措施，他们为癌症，COPD和其他限制生命的疾病患者提供护理。

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.