Disclosure Preferences of Older Latinos with Advanced Cancer & their Caregivers

患有晚期癌症的老年拉丁美洲人的披露偏好

• 批准号: 9149029
• 负责人: ISABEL TORRES
• 金额: $ 19.04万
• 依托单位: UNIVERSITY OF HOUSTON
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-25 至 2018-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9149029
• 关键词: Address; Advanced Malignant Neoplasm; Affect; Affective; Anxiety; Area; Behavioral; Behavioral Model; Beneficence; Bioethics; Canada; Cancer Patient; Caregivers; Caring; Clinical; Cognitive; Communication; Country; Data; Decision Making; Demographic Factors; Diagnosis; Diagnostic; Dimensions; Disclosure; Disseminated Malignant Neoplasm; Distress; Elements; Ethics; European; Family; Family Caregiver; Future; Goals; Healthcare; Hospitals; Hydration status; International; Intervention; Interview; Italy; Knowledge; Latin America; Latin American; Latino; Life; Locally Advanced Malignant Neoplasm; Malignant Neoplasms; Mental Depression; Methods; Mission; National Institute of Nursing Research; Older Population; Palliative Care; Participant; Patient Preferences; Patient Self-Report; Patient-Focused Outcomes; Patients; Perception; Persons; Physicians; Population; Portugal; Provider; Psychosocial Factor; Quality of Care; Recurrent Malignant Neoplasm; Research; Services; Societies; Spain; Staging; Subgroup; Surveys; Testing; Time; Variant; Vulnerable Populations; Work; anticancer research; base; end of life; evidence base; evidence based guidelines; experience; health care disparity; health disparity; health service use; improved; meetings; news; outcome forecast; patient oriented; preference; prevent; prognostic; public health relevance

 DESCRIPTION (provided by applicant): Meeting the communication needs and preferences of advanced cancer patients and their families is central to the delivery of quality care and speaks directly to the mission and programmatic goals of the National Institute of Nursing Research regarding palliative care, health disparities and this specific PA-11-182. However, little is known about the perceptions and preferences of older U.S. Latinos with cancer, one of the fastest growing segments of the older population and their family caregivers regarding the delivery of bad news. Evidence based guidelines regarding the communication of bad news are also limited, particularly for multicultural populations. Not knowing these preferences may hinder effective communication between providers and patients, an established ingredient for improving patient outcomes, as well as the use and quality of palliative care services. Guided by the Andersen, Aday Behavioral Model of Health Services Utilization the primary aim is to examine the association between behavioral, affective, cognitive and macro dimensions of culture and the disclosure and communication preferences of older Latinos with advanced cancer, and whether this association is moderated by key clinical, demographic and psychosocial factors. The study will also compare Latino cancer patients' disclosure preferences to those of their Anglo counterparts, as well as preferences between patients and caregivers in both groups. Survey participants will be 150 (100 Latino and 50 Anglo) older advanced cancer patients (stage 3 or 4 with locally advanced, recurrent or metastatic cancer) and 150 of their family caregivers. Using phenomenological interviews with a subsample of 20 Latino patients and 20 of their family caregivers, the study will explore and describe in-depth Latino patient and caregiver communication preferences regarding the content, style and timing of diagnostic and prognostic information, as well as perceptions and experiences that elucidate the context of their preferences within culture. Finally, the study will assess the concordance between patients' preferences and their self- reported actual experiences when they were first told they had cancer. The study will address critical knowledge gaps in bioethics research related to the tension between the principles of autonomy and beneficence in different cultures. It will be the first to identify the disclosure preferences of Latino patients and families using a unique approach which departs from the conventional notion that autonomy-based preferences are universal. It will also be the first to assess multiple dimensions of Latino culture in the area of health disparities in palliative care using mixed methods. A better understanding of patient and caregiver disclosure preferences will provide crucial information needed for future interventions, evidence-based guidelines, and enhancing vital provider-patient/family communication and care provided to older Latinos with advanced cancer and their families. Findings will also help inform approaches to the return of results to Latino cancer research participants and others with life limiting illnesses in our increasingly diverse, multicultural society.

 描述（由申请人提供）：满足晚期癌症患者及其家人的沟通需求和偏好是提供优质护理的核心，并直接体现了国家护理研究所关于姑息治疗、健康差异的使命和计划目标以及这个特定的 PA-11-182。 人们了解患有癌症的美国拉丁裔老年人的看法和偏好，他们是老年人口中增长最快的群体之一，而且他们的家庭照顾者关于传递坏消息的基于证据的指南也很有限，特别是对于坏消息的传播。不了解这些偏好可能会阻碍提供者和患者之间的有效沟通，而沟通是改善患者治疗效果的既定因素，也会妨碍以安徒生 (Andersen) 为指导的姑息治疗服务的使用和质量。目标是研究文化的行为、情感、认知和宏观维度与患有晚期癌症的老年拉丁裔患者的披露和沟通偏好之间的关联，以及这种关联是否受到关键临床、人口和社会心理因素的调节。该研究还将比较拉丁裔癌症。患者对其盎格鲁邻居的披露偏好，以及两组患者和护理人员之间的偏好 调查参与者将是 150 名（100 名拉丁裔和 50 名盎格鲁人）老年晚期癌症患者（局部晚期、复发或复发的 3 期或 4 期癌症患者）。转移性的该研究通过对 20 名拉丁裔患者及其家庭护理人员的子样本进行现象学访谈，深入探讨和描述拉丁裔患者和护理人员在诊断内容、风格和时间方面的沟通偏好。最后，该研究将评估患者的偏好与他们第一次被告知患有癌症时自我报告的实际经历之间的一致性。该研究将解决与不同文化中的自主原则和仁慈原则之间的紧张关系有关的生物伦理学研究中的关键知识差距，这将是第一个使用不同于传统概念的独特方法来确定拉丁裔患者和家庭的披露偏好的研究。基于自治的偏好是普遍存在的，这也将是第一个评估拉丁美洲文化在该领域的多个维度的项目。 使用混合方法更好地了解患者和护理人员的披露偏好将为未来的干预措施、循证指南以及加强为患有晚期癌症的拉丁裔老年患者提供重要的提供者与患者/家人的沟通和护理提供所需的重要信息。研究结果还将有助于向拉丁裔癌症研究参与者和其他在我们日益多元化、多元文化的社会中患有限制生命疾病的人提供结果反馈。