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.

抽象的 阿尔茨海默病和相关痴呆症 (ADRD) 患者的大部分护理责任都落在他们身上 家庭成员。虽然我们知道护理人员负责的任务类型，并描述了其风格 就护理而言，目前尚不清楚护理人员使用的流程如何影响其护理对象的结果。错过了 护理是卫生服务中的一个术语，它描述了由于轻率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，错过护理是 ADRD 家庭中常见的日常经历 照顾。因此，使用并发混合方法三角测量设计，我们的目标是更清楚地 了解 ADRD 家庭护理中导致错过护理的流程。完善的 错过护理模型将跳过护理的决定置于情境中，并指出情境前因（例如，时间 需求、资源稀缺）和内部流程（即价值观）影响护士如何决策 优先考虑护理，包括决定跳过所需的护理。我们的基本假设是类似的决定- ADRD 家庭护理中可以确定制作过程。在目标 1 中，我们将登记 ADRD 样本 从当地卫生系统招募的家庭护理人员 (N=225) 完成每日日记调查，描述 他们的一天。将使用多级结构方程模型来分析数据，以评估我们的应用 错过了护理模式到家庭护理。在目标 2 中，我们将使用扎根理论设计，深入研究 从参与者子集（N = 35）收集访谈数据，以产生决策的理论描述 - 与护理提供和优先顺序相关的制定。在目标 3 中，我们将对数据进行三角测量以创建数据驱动的 模型来解释导致 ADRD 家庭护理中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 导致错过护理的基本过程。这些数据将为一种新颖的数据驱动理论提供信息 描述 ADRD 家庭护理中导致错过护理事件的机制的模型。该模型将服务于 作为干预框架，强调可操作的干预目标。我们的结果有潜力 通过推进概念范式对家庭护理领域产生重大影响——从仅仅 定义家庭照顾者负责的任务，阐明决策过程 决定他们如何在现实生活中提供护理。这将有助于更好地协调未来的政策和 对照顾者需求进行干预。这项工作的一个创新之处在于它将微观纵向数据与 扎根理论分析，我们推测这将导致对关键过程的更生态有效的反映 日常护理。