de Oliveira Tavares Marcus Luciano, Pimenta Adriano Marçal, García-Vivar Cristina, Beinner Mark Anthony, Montenegro Lívia Cozer
Federal University of Minas Gerais, Belo Horizonte, MG, Brazil.
Federal University of Paraná, Curitiba, PR, Brazil.
Qual Life Res. 2025 Feb;34(2):365-375. doi: 10.1007/s11136-024-03814-w. Epub 2024 Oct 19.
Family caregivers of care-dependent patients experience a decline in their Quality of Life (QoL). However, the determinants contributing to this decrease in QoL are still not fully understood. Therefore, this study aimed to estimate prospectively the determinants contributing to decreased QoL among family caregivers of care-dependent patients.
This longitudinal study involved 135 family caregivers in Brazil. Data were collected at baseline from October 2016 to August 2017, and at follow-up from December 2021 to July 2022. During both periods, we administered a questionnaire that covered sociodemographic, health, and lifestyle characteristics of the participants; the Barthel Index to assess the dependency level of the patients; and the WHOQOL-bref to assess the caregivers' QoL.
Both caregivers and care-dependent patients were more frequently elderly (44.4% versus 74.6%), female (79.3% versus 61.5%), and had non-communicable disease (60.0% versus 94.3%) at baseline. Most patients experienced a worsening in their level of dependency (59.8%), while over a third of family caregivers (34.8%) reported a decline in their General Quality of Life Index. Eight determinants of decreased QoL were identified: four protective factors (religious faith, physical activity, sharing caregiving responsibilities, and sufficient sleep) and four risk factors (patient hospitalization in the past year, patient increased care dependency, older family caregiver age, and longer caregiving duration).
Many factors influencing caregiver QoL are modifiable through intervention, underscoring the need for public policies to support family caregivers. Healthcare professionals can play a vital role in promoting protective factors and addressing risk factors to enhance caregiver QoL.
需要照料的患者的家庭照料者生活质量（QoL）会下降。然而，导致这种生活质量下降的决定因素仍未完全明确。因此，本研究旨在前瞻性地评估导致需要照料的患者的家庭照料者生活质量下降的决定因素。
这项纵向研究涉及巴西的135名家庭照料者。在2016年10月至2017年8月的基线期以及2021年12月至2022年7月的随访期收集数据。在这两个时期，我们都发放了一份问卷，内容涵盖参与者的社会人口学、健康和生活方式特征；用于评估患者依赖程度的巴氏指数；以及用于评估照料者生活质量的世界卫生组织生活质量简表。
在基线期，照料者和需要照料的患者年龄较大的情况更为常见（分别为44.4%和74.6%），女性居多（分别为79.3%和61.5%），且患有非传染性疾病（分别为60.0%和94.3%）。大多数患者的依赖程度恶化（59.8%），而超过三分之一的家庭照料者（34.8%）报告其总体生活质量指数下降。确定了生活质量下降的八个决定因素：四个保护因素（宗教信仰、体育活动、分担照料责任和充足睡眠）和四个风险因素（患者过去一年住院、患者照料依赖增加、家庭照料者年龄较大以及照料持续时间较长）。
许多影响照料者生活质量的因素可通过干预加以改变，这突出了制定公共政策以支持家庭照料者的必要性。医疗保健专业人员在促进保护因素和应对风险因素以提高照料者生活质量方面可发挥至关重要的作用。
