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

平衡希望

• 批准号: 6691041
• 负责人: J Randall Curtis
• 金额: $ 34.1万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-01-01 至 2005-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6691041
• 关键词: behavioral /social science research tag; chronic obstructive pulmonary disease; clinical research; emotional adjustment; human subject; informatics; interview; neoplasm /cancer palliative treatment; nursing models; patient care personnel relations; prognosis; psychological adaptation; psychological aspect of cancer; terminal patient care

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.

描述（由研究人员提供）：终末或生命疾病的患者报告强烈需要保持希望他们能够克服疾病，同时他们希望完全披露自己的诊断和预后。 这两个目标是要保持希望并了解一个人对生存和生活质量的预后的真相，临床医生通常很难和解。 临终关心的专家呼吁临床医生将患者的希望重定向，从希望治愈的希望和预后差时对死亡质量的希望和垂死质量。 但是，没有数据可以帮助临床医生知道如何提供希望并同时向垂死的患者提供准确的预后信息。 这项拟议的研究将研究晚期癌症和慢性阻塞性肺部疾病（COPD），其家人以及他们的医疗保健提供者的观点，即希望对希望的需求与对预后的真实信息的需求之间经常被感知到的冲突。 我们将对患者，家庭成员，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十二个月的时间内连续进行，并将使用扎根理论的原理对研究人员进行分析。 此外，将在同一时间与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造验证。 将选择参与者来代表文化和种族多样的观点，分析将融合这种多样性。 最后，调查结果将提交给焦点小组，以评估分析的可信度并提高发现结果的普遍性。 这项研究的总体目的是制定临床医生在整个生命疾病过程中使用的策略，以支持患者双重需求希望和真实。 这些策略将被描述，并转化为针对护士，医师和为癌症，COPD和其他限制生命疾病的患者提供护理的干预措施。