Virgili Gianni, Ferron Francesco, Bartolomei Federico, Van Nispen Ruth, Costanzo Eliana, Ciaffoni Giovanni L, Rellini Emanuela, Turco Simona, Piepoli Marina, Di Pietro Simona, Fortini Stefania
Department of Neurofarba, University of Florence, Florence, Italy.
IRCCS - Fondazione Bietti, Rome, Italy.
Front Public Health. 2025 Jun 6;13:1530172. doi: 10.3389/fpubh.2025.1530172. eCollection 2025.
Despite growing evidence that underscores the importance of the caregiver's role in the rehabilitation process, visual rehabilitation (VR) programs often overlook these needs. The aim of this pilot study is to investigate the caregiving burden (CB) among informal caregivers of visually impaired (VI) patients who attend Italian VR centers, setting the bases for large-scale research.
Four Italian VR centers were involved. Demographic data and IADL (Instrumental Activities of Daily Living Scale) questionnaire to assess the degree of autonomy of VI patients were collected. Regarding the caregiver, the Italian validated version of the "Caregiver Burden Inventory (CBI)" was administered.
Fifty patients and their caregivers were included. The mean total CBI score was 23.6 points (SD 18.4), which is about the threshold for abnormal stress score. Moreover, 9 (18%) caregivers had scores ≥39, suggesting burn-out or mental disorder. The time-dependent (rho = 0.88), developmental (rho = 0.93), and physical burden (rho = 0.87) domains demonstrated the strongest correlations with overall CBI score. Furthermore, each additional hour of caring increased the score by 1.07 points ( = 0.004). No association was detected between total CBI score and other patient's characteristics, including dual sensory deficit (auditory and visual), as well as patient's IADL score.
In this pilot study in VI patients attending VR services, about one half of caregivers of VI patients experienced stress, with 1 in 5-6 suffering from burn-out or mental health issues. Larger studies should assess both the outcome and the resources needed to screen for CB, with care integrated in the patient rehabilitation pathway.
尽管越来越多的证据强调了照顾者在康复过程中的作用的重要性，但视觉康复（VR）项目往往忽视了这些需求。本试点研究的目的是调查参加意大利VR中心的视障（VI）患者的非正式照顾者的照顾负担（CB），为大规模研究奠定基础。
涉及四个意大利VR中心。收集了人口统计学数据和用于评估VI患者自主程度的IADL（日常生活活动量表）问卷。对于照顾者，使用了意大利语验证版的“照顾者负担量表（CBI）”。
纳入了50名患者及其照顾者。CBI总均分是23.6分（标准差18.4），这大约是异常压力评分的阈值。此外，9名（18%）照顾者的得分≥39分，表明存在倦怠或精神障碍。时间依赖领域（rho = 0.88）、发展领域（rho = 0.93）和身体负担领域（rho = 0.87）与CBI总分的相关性最强。此外，每增加一小时的照顾，得分增加1.07分（P = 0.004）。未发现CBI总分与其他患者特征之间存在关联，包括双重感觉缺陷（听觉和视觉）以及患者的IADL评分。
在这项针对参加VR服务的VI患者的试点研究中，约一半的VI患者照顾者经历了压力，五到六分之一的人患有倦怠或心理健康问题。更大规模的研究应评估筛查CB所需的结果和资源，并将护理纳入患者康复路径。
