Missed Care in Family Caregiving for Alzheimer's Disease and Related Dementias

阿尔茨海默病和相关痴呆症的家庭护理中的缺失

• 批准号: 10211026
• 负责人: Carolyn E Ziminski Pickering
• 金额: $ 53.91万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-06-01 至 2026-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10211026
• 关键词: Activities of Daily Living; Alzheimer' s disease related dementia; Care given by nurses; Caregivers; Caring; Data; Decision Making; Development; Discipline of Nursing; Elder Abuse; Enrollment; Equation; Event; Failure; Family Caregiver; Family member; Formal caregiver; Future; Guidelines; Health Services; Health Services Research; Health system; Intervention; Interview; Knowledge; Left; Life; Light; Measures; Methods; Modeling; Nurses; Outcome; Participant; Patient Self-Report; Perception; Persons; Physiological; Policies; Process; Quality of Care; Research; Resources; Sampling; Self Care; Stress; Structure; Surveys; Testing; Theoretical model; Time; Work; care outcomes; care recipients; caregiving; caregiving outcomes; contextual factors; design; diaries; driving force; experience; falls; family caregiving; improved; innovation; insight; instrumental activity of daily living; longitudinal design; neglect; novel; psychologic; recruit; theories

Abstract Most caregiving responsibilities for persons with Alzheimer’s disease and related dementias (ADRD) fall on their family members. While we know types of tasks caregivers are responsible for, and have described styles of caregiving, it remains unclear how processes used by caregivers impact outcomes for their care recipient. Missed care is a term from health services which describes care that is left undone because of a decision made in light of other factors. Our preliminary data suggest that missed care is a frequent and daily experience in ADRD family caregiving. Therefore, using a concurrent mixed-methods triangulation design, we aim to more clearly understand processes that contribute to missed care within ADRD family caregiving. The well-established missed care model contextualizes the decision to skip care and points to situational antecedents (e.g., time demands, resource scarcity) and internal processes (i.e., values) that impact nurses' decision-making on how to prioritize care, including decisions to skip needed care. Our underlying hypothesis is that similar decision- making processes can be identified within ADRD family caregiving. In Aim 1, we will enroll a sample of ADRD family caregivers recruited from the local health system (N=225) to complete daily diary surveys characterizing their day. Data will be analyzed using multi-level structural equation modeling to evaluate our application of the Missed Nursing Care Model to family caregiving. In Aim 2, we will use a grounded theory design with in-depth interview data collected from a subset of participants (N=35) to produce a theoretical description of decision- making related to care provision and prioritization. In Aim 3, we will triangulate the data to create a data-driven model to explain multi-factorial daily decision-making that leads to missed care in ADRD family caregiving. Distinguishing the process of decision-making (Aim 2) from its underlying contextual factors (Aim 1) will identify the underlying processes contributing to missed care. This body of data will inform a novel data-driven theoretical model describing mechanisms leading to missed care events in ADRD family caregiving. This model will serve as an intervention framework, highlighting actionable intervention targets. Our results have the potential to significantly impact the family caregiving field by advancing its conceptual paradigm – moving from merely defining the tasks for which family caregivers are responsible, to illuminating the decision-making process that determines how they provide care in real-life contexts. This will permit a better alignment of future policies and interventions with caregiver needs. An innovation of this work is its combination of micro-longitudinal data with grounded theory analysis, which we surmise will lead to a more ecologically valid reflection of key processes in day-to-day caregiving.

摘要 阿尔茨海默病和相关痴呆症(ADRD)患者的大部分照顾责任落在他们的 家庭成员。虽然我们知道照顾者负责的任务类型，并描述了 在护理方面，目前尚不清楚护理者使用的流程如何影响其护理接受者的结果。漏掉 护理是卫生服务中的一个术语，描述的是由于在光明中做出的决定而未完成的护理 其他因素的影响。我们的初步数据表明，在ADRD家庭中，错过护理是一种常见的日常经历 照顾他人。因此，使用并行混合方法三角剖分设计，我们的目标是更清楚地 了解ADRD家庭照护中导致遗漏照护的流程。久负盛名 错过护理模型将跳过护理的决定与情境先行因素(例如，时间)联系起来 需求、资源稀缺性)和内部流程(即价值观)，这些因素会影响护士在如何 确定护理的优先顺序，包括决定跳过需要的护理。我们的基本假设是，类似的决定- 制作过程可以在ADRD家庭照看中确定。在目标1中，我们将招募ADRD样本 从当地卫生系统招募的家庭照顾者(N=225)，以完成每日日记调查，其特征是 他们的一天。数据将使用多层结构方程建模进行分析，以评估我们对 从护理模式缺失到家庭护理。在目标2中，我们将使用扎根的理论设计，并深入 从参与者子集(N=35)收集的访谈数据，以产生决策的理论描述- 与提供护理和确定优先顺序有关。在目标3中，我们将对数据进行三角剖分以创建数据驱动的 模型来解释在ADRD家庭护理中导致错过护理的多因素日常决策。 将决策过程(目标2)与其潜在的背景因素(目标1)区分开来将确定 导致错过护理的潜在过程。这些数据将提供一种新的数据驱动的理论 描述ADRD家庭照护中导致遗漏照护事件的机制的模型。这一型号将适用于 作为干预框架，强调可操作的干预目标。我们的研究结果有可能 通过推进家庭护理领域的概念范式-从仅仅 确定家庭照顾者负责的任务，以阐明决策过程 确定他们如何在现实生活环境中提供护理。这将允许更好地协调未来的政策和 满足照顾者需求的干预措施。这项工作的一个创新是将微观纵向数据与 扎根的理论分析，我们推测这将导致对关键过程更生态有效的反映 日常照看。