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

生活在不确定性中：临终关怀

基本信息

批准号：
6801464
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
项目类别：
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/6801464
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

项目摘要

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）：虽然我们有初步的了解，在非正式的照顾者的不确定性的状态，护理站在不准备在这些复杂的生活经历进行干预。不确定性最好被描述为一种“不知道”或怀疑的状态。该项目将以前关于非正式照顾者的不确定性状态的工作扩展到生命终了护理的背景下，以便为随后的干预研究开发必要的工具。建立干预协议，以支持经历不确定性的照顾者的完整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照顾者报告的不确定性经历的变化进行扎根理论研究，解决了这种理论发展问题。该项目目标2的目标是理论整合和制定评估指南。一种创新的定性方法，称为模板分析将被用来覆盖的扎根理论的研究结果与多种类型和层次的相关研究结果在文献中发现，以进一步完善我们的理解的概念不确定性之间的非正式照顾者提供临终关怀。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现概念联系起来，以提供对经验的更高级理解。经过这些理论整合的过程，将制定一个评估指南，明确的行为线索标记的各种形式的不确定性，通常是由非正式的照顾者经历。最后，利用扎根理论、模板分析、实践理论和人类经验的资源，管理各种形式的不确定性的战略将被纳入评估指南。将多种形式的知识结合起来，将产生一个在不确定时期进行干预的全面战略纲要，以最大限度地提高非正式照顾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组成部分，相关的行为线索，有针对性的干预措施，评估指南的照顾者的不确定性将提供必要的工具，为研究人员开发的干预方案，用于后续的研究。