Living with Uncertainty: Caregiving at the End-of-Life

生活在不确定性中：临终关怀

• 批准号: 6670849
• 负责人: JANICE L PENROD
• 金额: $ 7.2万
• 依托单位: PENNSYLVANIA STATE UNIVERSITY, THE
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-09-30 至 2005-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6670849
• 关键词: behavioral /social science research tag; caregivers; clinical research; cues; decision making; experience; health behavior; home health care; human subject; interview; nursing research; quality of life; terminal patient care

DESCRIPTION (provided by applicant): While we have preliminary understanding of states of uncertainty in informal caregivers, nursing stands ill prepared to intervene during these complex life experiences. Uncertainty is best described as a state of "not knowing" or of doubt. This project extends previous work on states of uncertainty in informal caregivers into the context of end-of-life care in order to develop the tools necessary for a subsequent intervention study. The initial step in building an intervention protocol to support the integrity of caregivers experiencing uncertainty is to validate and extend theory on uncertainty. Aim 1 of this project addresses such theoretical development through a grounded theory study of variations in the experiences of uncertainty reported by informal caregivers who have experienced end-of-life care. The objectives of Aim 2 of the project are theoretical integration and the development of an assessment guide. An innovative qualitative method called template analysis will be used to overlay the findings of the grounded theory with multiple types and levels of related findings found in the literature in order to further refine our understanding of the concept of uncertainty among informal caregivers providing end-of-life care. Then, using a technique called concept integration, the refined concept of uncertainty will be linked with co-occurring concepts to provide a more advanced understanding of the experience. After these processes of theoretical integration, an assessment guide that explicates the behavioral cues marking the varied forms of uncertainty that are commonly experienced by informal caregivers will be developed. Finally, drawing upon the resources of the grounded theory, template analysis, practice theory, and human experience, strategies for managing varied forms of uncertainty will be integrated into the assessment guide. Such an integration of multiple forms of knowledge will produce a comprehensive compendium of strategies for intervening in times of uncertainty in order to maximize the informal caregiver's ability to contribute meaningfully as a critical partner in end-of-life care. By organizing significant theoretical components, related behavioral cues, and targeted interventions, the assessment guide of caregiver uncertainty will provide the researchers with the tools necessary for the development of an intervention protocol for use in subsequent research.

描述（由申请人提供）：虽然我们对非正式护理人员的不确定性状态有初步的了解，但护理人员在这些复杂的生活经历中还没有做好干预的准备。不确定性最好被描述为“不知道”或怀疑的状态。本项目将以前关于非正式护理人员不确定状态的工作扩展到临终关怀的背景下，以便开发后续干预研究所需的工具。在建立一个干预协议，以支持护理人员的完整性经历不确定性的第一步是验证和扩展理论的不确定性。本项目的目标1通过对经历过临终关怀的非正式护理人员报告的不确定性经验的变化进行接地理论研究，解决了这种理论发展。该项目的目标2是理论整合和评估指南的发展。一种称为模板分析的创新定性方法将被用于将扎根理论的发现与文献中发现的多种类型和水平的相关发现叠加在一起，以进一步完善我们对提供临终关怀的非正式照顾者的不确定性概念的理解。然后，使用一种称为概念整合的技术，将不确定性的精炼概念与共同发生的概念联系起来，以提供对经验的更高级理解。在这些理论整合过程之后，将开发一个评估指南，以解释标志着非正式照顾者通常经历的各种不确定性形式的行为线索。最后，利用基础理论、模板分析、实践理论和人类经验的资源，将管理各种形式不确定性的策略整合到评估指南中。这种多种形式知识的整合将产生一种全面的策略纲要，用于在不确定时期进行干预，以便最大限度地提高非正式护理者作为临终关怀关键伙伴作出有意义贡献的能力。通过组织重要的理论成分、相关的行为线索和有针对性的干预措施，照顾者不确定性评估指南将为研究人员提供必要的工具，以制定后续研究中使用的干预方案。