Improving Understanding of Quality End of Life Care Using a Dyadic Approach

使用二元方法提高对优质临终护理的理解

• 批准号: 10735211
• 负责人: Sara L. Douglas
• 金额: $ 69.25万
• 依托单位: CASE WESTERN RESERVE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-13 至 2028-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10735211
• 关键词: Advance Care Planning; Advanced Malignant Neoplasm; Caregivers; Caring; Categories; Cessation of life; Collaborations; Communication; Consensus; Correlation Studies; Development; Diagnosis; Distant Metastasis; Emergency department visit; Ensure; Exclusion; Family; Fostering; Goals; Grief reaction; Health; Health Personnel; Healthcare; Hospice Care; Hospitalization; Individual; Intervention; Investigation; Knowledge; Length of Stay; Malignant Neoplasms; Mediating; Methods; Modeling; Outcome; Palliative Care; Patient Care; Patient Preferences; Patients; Play; Process; Proxy; Quality of Care; Quality of life; Research; Resources; Risk; Role; Science; Severities; Symptoms; Theoretical model; Time; Value of Life; aggressive therapy; care outcomes; contextual factors; end of life; end of life care; end-of-life decision making; experience; health care service; improved; informal caregiver; insight; loved ones; member; preference; provider factors; research study; satisfaction; social; theories

Project Summary/Abstract There is strong national consensus about the need to deliver high-quality care at the end of life (EOL) for patients with advanced (distant metastasis) cancer. Yet, despite the efforts of healthcare providers, many patients receive care that they do not want at EOL and leave their informal caregivers struggling with complicated grief months after their death. Research, to date, has tended to define quality EOL care using unidimensional factors that do not encompass key aspects of EOL care, such as patient and family-centered EOL care that holds individual preferences for EOL care at its core. Specifically, quality EOL care has been defined in terms of either: (a) amount of aggressive health care services received, or (b) whether it was “goal concordant care”---care that aligned with the patient’s preferences and goals for EOL care. These approaches have provided limited perspectives of what constitutes quality EOL care. Aggressiveness metrics (e.g., days of hospitalization, number of emergency department visits), for example, ignore the fact that some patients want aggressive care at EOL and goal concordant care metrics ignore the post-death QOL of caregivers. It is usually the patient-caregiver dyad who experience the trajectory of care, and who need support throughout. With patients continuing to receive EOL care that they do not want and caregivers struggling with poor post- death outcomes such as complicated grief, we need a new paradigm for conceptualizing quality EOL care. This project will be the first to apply the principles of a dyadic theory of illness to examine the relationships between patient-caregiver dyadic factors (e.g., dyadic incongruence for patient symptom severity) and dyadic quality EOL care. We have reconceptualized quality EOL care to be care that benefits both members of the dyad and is present when the patient identifies the receipt of goal concordant care at EOL and the caregiver does not demonstrate complicated grief 3 months post-death. This longitudinal, descriptive, correlational study will address the following aims: Aim 1: Examine the influence of dyadic appraisal of illness factors upon dyadic quality EOL care (present or absent); Aim 2: Examine the influence of risk-protective contextual factors (individual, dyadic, family/social) on dyadic appraisal of illness factors (symptoms, EOL treatment preferences, EOL values) over time; and Aim 3: Assess the extent to which dyadic appraisal of illness factors mediate the relationship between risk-protective contextual factors and dyadic quality EOL care. Identifying specific dyadic variables (such as symptom severity incongruence) that relate to dyadic outcomes can facilitate the development of dyadic interventions aimed at enhancing communication or knowledge, for example, for both members of the dyad over time. By enhancing dyadic outcomes, we will have better stewardship of healthcare resources for patients at EOL and ensure improved quality EOL care for patients and improved post-death outcomes for caregivers---those who must carry on after the patient’s death.

项目摘要/摘要 关于在生命结束时提供高质量护理（EOL）的必要性有很强的共识 患有晚期转移癌症的患者。但是，做医疗保健提供者的努力，许多 患者受到关怀，他们不想在EOL，并让他们的非正式护理人员挣扎 复杂的怪兽死后几个月。迄今为止，研究倾向于使用 一维因素不包含EOL护理的关键方面的因素，例如患者和以家庭为中心 EOL护理具有个人对EOL护理的偏好的核心。具体而言，优质的EOL护理一直是 根据以下任务定义：（a）收到的积极性医疗服务的数量，或（b）是否是“目标 一致的护理” ---与患者的偏好和EOL护理目标保持一致的护理。这些方法 对构成优质EOL护理的观点提供了有限的观点。侵略性指标（例如， 例如 EOL和目标一致护理指标的积极护理忽略了看护人的死亡质量。这是 通常，经历护理轨迹并且在整个过程中需要支持的患者保养者二元组。 随着患者继续接受不想要的EOL护理，照顾者与糟糕的后 诸如复杂的贪婪之类的死亡结果，我们需要一个新的范式来概念化优质的EOL护理。 该项目将是第一个应用二元疾病理论原则来检查关系的项目 在患者保养者的二元因素（例如，患者症状严重程度的二元不一致）和二元组之间 优质的EOL护理。我们已经重新概念化了质量的EOL护理，以照顾好，使两个成员受益 当患者确定在EOL和护理人员的目标一致护理的情况下，二元组在场 死后3个月没有表现出复杂的悲伤。这项纵向，描述性的相关研究 将解决以下目的：目标1：检查二元疾病因素对二元的影响的影响 优质的EOL护理（现在或不存在）；目标2：检查风险保护性上下文因素的影响 （个人，二元，家庭/社会）对疾病因素的二元评估（症状，EOL治疗偏好， EOL值）随着时间的流逝；目标3：评估疾病因素的二元评估介导的程度 风险保护性上下文因素与二元质量EOL护理之间的关系。识别特定的二元 与二元结果有关的变量（例如症状严重程度不一致）可以促进 开发旨在增强沟通或知识的二元干预措施，例如 随着时间的流逝，二元成员的成员。通过增强二元成果，我们将更好地管理医疗保健 EOL患者的资源，并确保改善患者的质量EOL护理并改善了死亡后 护理人员的结果 - - 患者死后必须继续的人。