Engaging patients, family members and caregivers in end-of-life and palliative care (EOLPC) research: Addressing the bioethical challenges

让患者、家庭成员和护理人员参与临终关怀和姑息治疗 (EOLPC) 研究：应对生物伦理​​挑战

• 批准号: 9927885
• 负责人: JEAN S KUTNER
• 金额: $ 15.53万
• 依托单位: UNIVERSITY OF COLORADO DENVER
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-09-28 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9927885
• 关键词: Address; Administrative Supplement; American; Attention; Belief; Bioethical Issues; Bioethics; Caregivers; Chronic Disease; Communities; Decision Making; Disease; Elderly; Ensure; Environment; Ethical Issues; Ethics; Evaluation; Face; Family; Family Caregiver; Family member; Frail Elderly; Funding; Geography; Goals; Grief reaction; Health; Health Services Accessibility; Impairment; Individual; Institute of Medicine (U.S.); Interdisciplinary Study; Interview; Justice; Methods; Outcome; Palliative Care; Participant; Patient Care; Patient Preferences; Patient-Focused Outcomes; Patients; Personal Satisfaction; Persons; Phase; Policies; Population; Quality of Care; Quality of life; Research; Research Institute; Research Personnel; Research Project Grants; Resources; Science; Shapes; Site; Structure; Support Groups; Time; United States National Institutes of Health; Vulnerable Populations; advanced dementia; base; decision-making capacity; dissemination research; end of life; evidence base; experience; implementation research; improved; innovation; insight; investigator training; member; novel; patient engagement; patient oriented; patient population; population health; preference; psychologic; racial and ethnic; recruit; research data dissemination; social; socioeconomics

PROJECT ABSTRACT For the millions of Americans who experience the possible physical, psychological, and social effects of severe and chronic illness, palliative care can be essential to supporting an optimal quality of life. Estimates suggest that two-thirds of all people in the US could benefit from palliative care at some point, and this estimate does not include the family members and caregivers who may also benefit. The delivery of high-quality, patient- centered palliative care depends upon end-of-life and palliative care (EOLPC) Research. Realizing the full benefits of palliative care research requires the engagement of patients, families, and caregivers in every phase of research. Effective engagement can make research better by increasing the relevance of research questions to patients, enhancing recruitment, and improving dissemination & implementation of research results. However, engagement can raise ethical challenges - such as ensuring engagement participants are truly representative of the broader patient population and that engagement does not present undue burdens – that have only recently been explored, but not in EOLPC Research. Because EOLPC Research is a unique setting, it can present unique ethical challenges to effective engagement. Patients may be vulnerable due to their state of illness (such as in the frail elderly) or due to absent or intermittent decision-making capacity. Family caregivers may struggle to know and represent patients' priorities or have difficulty engaging due to ongoing grief. Any potential ethical challenges may be particularly relevant for individuals who are doubly vulnerable because of existing racial, ethnic, socioeconomic, and geographic disparities in access to EOLPC. Explicitly eliciting their preferences about research is critical for shaping research that meets their needs. The goals of this project are to advance the science of bioethics and engagement in research and to provide ethics guidance to support researchers in engaging palliative care patients, caregivers, and others in EOLPC Research. We will achieve this goal by (1) using semi-structured interviews to obtain insights into the real- world ethical challenges facing investigators as well as patients, family members, and caregivers in EOLPC research engagement; (2) defining outcomes of importance to the different stakeholders; and (3) creating practical ethics guidance for identifying and managing ethical issues in engaging patients in EOLPC research. The project will be conducted within the Palliative Care Research Cooperative Group (PCRC) (U2C NR014637), a robust interdisciplinary research community comprised of more than 500 members at more than 180 sites. This supplement will build on the existing resources of the PCRC to enhance the patient-centered palliative care research and address gaps in the evidence base related to patient engagement in EOLPC Research.

项目摘要 对于数百万遭受严重疾病可能造成的身体、心理和社会影响的美国人来说 和慢性病，姑息治疗对于支持最佳生活质量至关重要。估计建议 美国三分之二的人可能会在某个时候受益于姑息治疗，这一估计确实 不包括也可能受益的家庭成员和护理人员。提供高质量、耐心的服务 以临终关怀和姑息治疗 (EOLPC) 研究为中心的姑息治疗。实现全面 姑息治疗研究的好处需要患者、家属和护理人员的参与 研究阶段。有效的参与可以通过提高研究的相关性来使研究变得更好 向患者提问、加强招募、改善研究的传播和实施 结果。然而，参与可能会带来道德挑战——例如确保参与参与者 真正代表更广泛的患者群体，并且参与不会带来不当的负担 – 最近才被探索过，但 EOLPC 研究中还没有。因为 EOLPC 研究是一个独特的 在这种情况下，它可能会对有效参与提出独特的道德挑战。患者可能因以下原因而变得脆弱 他们的疾病状况（例如体弱的老年人）或由于缺乏或间歇性的决策能力。 家庭护理人员可能很难了解并代表患者的优先事项，或者由于以下原因而难以参与： 持续的悲伤。任何潜在的道德挑战可能与双重身份的个人特别相关 由于在获得 EOLPC 方面存在的种族、民族、社会经济和地理差异，该群体处于弱势地位。 明确地激发他们对研究的偏好对于塑造满足他们需求的研究至关重要。这 该项目的目标是推进生物伦理学和研究参与，并提供伦理学 支持研究人员让姑息治疗患者、护理人员和其他人参与 EOLPC 的指南 研究。我们将通过以下方式实现这一目标：（1）使用半结构化访谈来深入了解真实情况 EOLPC 中的研究人员以及患者、家属和护理人员面临的世界伦理挑战 研究参与； (2) 定义对不同利益相关者重要的结果； (3) 创建 用于识别和管理患者参与 EOLPC 研究过程中的伦理问题的实用伦理指南。 该项目将在姑息治疗研究合作组织 (PCRC) (U2C NR014637），一个强大的跨学科研究社区，由超过 500 名成员组成 180 个站点。该补充文件将建立在 PCRC 现有资源的基础上，以加强以患者为中心的服务 姑息治疗研究并解决与患者参与 EOLPC 相关的证据基础差距 研究。