Department of Medicine, University of Wisconsin-Madison School of Medicine and Public Health, Madison, Wisconsin, USA.
University of Wisconsin-Madison School of Nursing, Madison, Wisconsin, USA.
J Am Geriatr Soc. 2023 Nov;71(11):3435-3444. doi: 10.1111/jgs.18541. Epub 2023 Aug 7.
Persons living with dementia (PLWD) experience high rates of hospitalization and rehospitalization, exposing them to added risk for adverse outcomes including delirium, hastened cognitive decline, and death. Hospitalizations can also increase family caregiver strain. Despite disparities in care quality surrounding hospitalizations for PLWD, and evidence suggesting that exposure to neighborhood-level disadvantage increases these inequities, experiences with hospitalization among PLWD and family caregivers exposed to greater levels of neighborhood disadvantage are poorly understood. This study examined family caregiver perspectives and experiences of hospitalizations among PLWD in the context of high neighborhood-level disadvantage.
We analyzed data from the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) study, an in-depth, multisite qualitative study examining hospitalization and rehospitalization of PLWD in the context of high neighborhood disadvantage, to identify caregiver perspectives and experiences of in-hospital care. Data were analyzed using rapid identification of themes; duplicate transcript review was used to enhance rigor.
Data from N = 54 individuals (47 individual interviews, 2 focus groups with 7 individuals) were analyzed. Sixty-three percent of participants identified as Black/African American, 35% as non-Hispanic White, and 2% declined to report. Caregivers' experiences were largely characterized by PLWD receiving suboptimal care that caregivers viewed as influenced by system pressures and inadequate workforce competencies, leading to communication breakdowns and strain. Caregivers described poor collaboration between clinicians and caregivers with regard to in-hospital care delivery, including transitional care. Caregivers also highlighted the lack of person-focused care and the exclusion of the PLWD from care.
Caregiver perspectives highlight opportunities for improving hospital care for PLWD in the context of neighborhood disadvantage and recognition of broader issues in care structure that limit their capacity to be actively involved in care. Further work should examine and develop strategies to improve caregiver integration during hospitalizations across diverse contexts.
痴呆症患者（PLWD）的住院和再住院率很高，使他们面临更多的不良后果风险，包括谵妄、认知能力加速下降和死亡。住院治疗还会增加家庭照顾者的负担。尽管 PLWD 住院治疗的护理质量存在差异，并且有证据表明，接触邻里劣势会增加这些不平等现象，但 PLWD 及其接触到更多邻里劣势的家庭照顾者的住院经历却鲜为人知。本研究在邻里劣势水平较高的情况下，研究了 PLWD 及其家庭照顾者对住院治疗的看法和经历。
我们分析了 Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations（SUPPORT）研究的数据，该研究是一项深入的、多地点定性研究，研究了高邻里劣势环境下 PLWD 的住院和再住院情况，以确定照顾者对住院护理的看法和经历。数据使用快速主题识别方法进行分析；重复审查转录本以增强严谨性。
分析了来自 N=54 人的数据（47 份个人访谈、2 个有 7 人参加的焦点小组）。63%的参与者自认为是黑人/非裔美国人，35%是非西班牙裔白人，2%的人拒绝报告。照顾者的经历主要表现为 PLWD 接受的护理质量不佳，照顾者认为这是受系统压力和劳动力能力不足的影响，导致沟通中断和紧张。照顾者描述了临床医生和照顾者之间在住院护理方面的协作不佳，包括过渡性护理。照顾者还强调了缺乏以人为本的护理以及将 PLWD 排除在护理之外。
照顾者的观点强调了在邻里劣势的情况下改善 PLWD 住院护理的机会，以及认识到护理结构中更广泛的问题限制了他们积极参与护理的能力。进一步的工作应该研究和制定在不同背景下改善照顾者在住院期间融入的策略。
