Department of Occupational Therapy, Jefferson College of Rehabilitation Sciences, Thomas Jefferson University, Philadelphia, Pennsylvania, USA.
Wharton Communication Program, The Wharton School, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Gerontologist. 2024 Apr 1;64(4). doi: 10.1093/geront/gnad102.
Alzheimer's disease and related dementias progress over time and result in cognitive decline, loss of independence, and behavioral and psychiatric symptoms of dementia that can lead to nursing home placement. Research has focused on examining the effects of nursing home placement on the family caregiver; however, their experiences are less understood. We sought to investigate the experiences and perceptions of family caregivers of nursing home residents with dementia. The objective was to create a conceptual model that explains the complex nature of the family caregiver experience.
This study is part of a larger randomized controlled trial. Following a grounded theory approach, we completed 30 in-depth, one-on-one interviews with family caregivers of nursing home residents with dementia. Data analysis followed an iterative process that employed open, axial, and selective coding.
Our conceptual model depicts the interrelationship between contributing factors that interrelate and impact family caregiver satisfaction with nursing home care. Six factors contribute to family caregiver satisfaction: family caregiver interactions with nursing home staff; staff management of resident behavioral symptoms; nursing home context; family caregiver knowledge of dementia; family caregiver strain; and the resident experience.
Our findings revealed family caregiver experiences that are unique to the institutional nursing home setting and not reflected in prior work focusing on experiences within community-based settings. Understanding family caregiver experiences and the contributors to how satisfaction in care is perceived, may foster collaboration and teamwork among families and staff.
阿尔茨海默病和相关痴呆症会随时间进展，导致认知能力下降、丧失独立性，以及出现痴呆的行为和精神症状，这可能导致需要入住养老院。研究重点一直放在检查养老院安置对家庭照顾者的影响上；然而，他们的经历却鲜为人知。我们试图调查养老院痴呆症居民家庭照顾者的经历和看法。目的是创建一个解释家庭照顾者体验复杂性的概念模型。
本研究是一项更大的随机对照试验的一部分。我们采用扎根理论方法，对养老院痴呆症居民的 30 名家庭照顾者进行了 30 次深入的一对一访谈。数据分析采用迭代过程，运用开放式、轴向和选择性编码。
我们的概念模型描绘了相互关联并影响家庭照顾者对养老院护理满意度的促成因素之间的相互关系。有六个因素影响家庭照顾者的满意度：家庭照顾者与养老院工作人员的互动；工作人员对居民行为症状的管理；养老院环境；家庭照顾者对痴呆症的了解；家庭照顾者的压力；以及居民的体验。
我们的研究结果揭示了家庭照顾者在机构养老院环境中的独特体验，而这些体验在以前专注于社区环境中体验的工作中并没有反映出来。了解家庭照顾者的经历以及对护理满意度的看法的促成因素，可能会促进家庭和工作人员之间的合作和团队合作。
