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: 10612919
• 负责人: Carolyn E Ziminski Pickering
• 金额: $ 8.58万
• 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 2023-08-07
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10612919
• 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; Responsible Person; Sampling; Self Care; Stress; Surveys; Testing; Theoretical model; Time; Work; care outcomes; care recipients; caregiving; caregiving outcomes; contextual factors; data-driven model; 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）患者的大多数医疗责任都落在他们的身上。 家庭成员虽然我们知道照顾者负责的任务类型，并描述了 尽管如此，目前仍不清楚护理人员使用的过程如何影响其护理对象的结果。错过 护理是一个来自卫生服务的术语，它描述了由于光的决定而未完成的护理。 其他因素。我们的初步数据表明，错过照顾是一个经常和日常的经验，在ADRD家庭 - 不好意思因此，使用并发混合方法三角测量设计，我们的目标是更清楚地 了解导致ADRD家庭护理缺失的过程。的既定 遗漏护理模型将跳过护理的决定置于情境中并指向情境前因（例如，时间 需求，资源稀缺性）和内部过程（即，价值观），影响护士的决策， 优先考虑护理，包括决定跳过必要的护理。我们的假设是类似的决定- 制造过程可以在ADRD家族的制造过程中识别。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）完成每日日记调查， 他们的日子。数据将使用多层次结构方程模型进行分析，以评估我们的应用， 护理模式对家庭关怀的缺失。在目标2中，我们将使用扎根理论设计， 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- 制定与提供护理和确定优先次序有关的政策。在目标3中，我们将对数据进行三角测量， 模型来解释多因素的日常决策，导致错过了照顾ADRD家庭团聚。 将决策过程（目标2）与其潜在的背景因素（目标1）区分开来， 导致护理缺失的潜在过程。这些数据将为一个新的数据驱动的理论提供信息。 模型描述了导致ADRD家族成员错过护理事件的机制。这种模式将服务于 作为干预框架，突出可采取行动的干预目标。我们的研究结果有可能 通过推进其概念范式-从仅仅 确定家庭照顾者负责的任务，以阐明决策过程， 决定了他们如何在现实生活中提供护理。这将使未来的政策更好地协调一致， 满足照顾者的需求。本文的创新之处在于将微观纵向数据与 扎根理论分析，我们认为这将导致一个更生态有效的关键过程的反映， 日常生活中。