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“我们转移她太早了”:痴呆症患者入住长期护理机构后,成年子女和配偶照顾者如何应对内疚感

"We Moved Her Too Soon": Navigating Guilt Among Adult Child and Spousal Caregivers of Persons Living with Dementia Following a Move into Residential Long-Term Care.

作者信息

Statz Tamara L, Peterson Colleen M, Birkeland Robyn W, McCarron Hayley R, Finlay Jessica M, Rosebush Christina E, Baker Zachary G, Gaugler Joseph E

机构信息

Division of Health Policy and Management, School of Public Health, University of Minnesota.

Division of Epidemiology and Community Health, School of Public Health, University of Minnesota.

出版信息

Couple Family Psychol. 2022 Dec;11(4):300-314. doi: 10.1037/cfp0000150. Epub 2021 May 13.

Abstract

Guilt is a complex and multifaceted emotion navigated by many family caregivers. Guilt is sometimes experienced following a transition into a residential long-term care facility, even when the move is necessary given high care needs related to Alzheimer's disease and related dementias. This mixed methods study identifies and compares areas of guilt most frequently experienced by spouse and adult child caregivers (N=83) of a family member with dementia following transition into residential long-term care. Nearly half of caregivers reported experiencing guilt from their care recipient, other family members, or facility staff. Quantitative analyses explored variables that predict heightened feelings of guilt, and qualitative thematic analyses provided rich insight into subjective experiences of guilt. Person-specific and situational characteristics influenced caregiver guilt, including level of involvement in care, frequency and quality of visits, and perceptions of the residential long-term care facility. We identify specific opportunities for tailored couple and family psychology interventions including communication strategies, decision-making approaches, focusing on positives, psychoeducation, self-forgiveness exercises, stress management and self-care activities, and validation. The present work informs how counseling interventions can provide practical support by highlighting specific clinical mechanisms that help to alleviate common facets of caregiver guilt following a transition into residential long-term care. Critically, we distinguish variation between spouses and adult children to design treatment plans that best support clients who are caring for a person living with dementia in residential long-term care.

摘要

内疚是许多家庭照顾者所经历的一种复杂且多面的情绪。即使是在因阿尔茨海默病及相关痴呆症导致的高护理需求而有必要将家人转移至长期护理机构时,进入该机构后有时也会产生内疚感。这项混合方法研究识别并比较了痴呆症患者家属(N = 83)在转入长期护理机构后,配偶和成年子女照顾者最常经历的内疚领域。近一半的照顾者报告称,他们因照顾对象、其他家庭成员或机构工作人员而感到内疚。定量分析探讨了预测内疚感增强的变量,定性主题分析则深入洞察了内疚的主观体验。个人特定和情境特征会影响照顾者的内疚感,包括参与护理的程度、探访的频率和质量,以及对长期护理机构的看法。我们确定了针对夫妻和家庭的个性化心理干预的具体机会,包括沟通策略、决策方法、关注积极方面、心理教育、自我宽恕练习、压力管理和自我护理活动,以及确认。本研究通过强调有助于减轻照顾者在转入长期护理机构后内疚常见方面的具体临床机制,为咨询干预如何提供实际支持提供了信息。至关重要的是,我们区分了配偶和成年子女之间的差异,以设计出最能支持在长期护理机构照顾痴呆症患者的客户的治疗方案。

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