Haroen Hartiah, Juniarti Neti, Sari Citra Windani Mambang, Prista Sari Sheizi, Arovah Novita Intan, Pardosi Jerico Franciscus, Wibowo Daniel Akbar
Department of Community Nursing, Faculty of Nursing, Universitas Padjadjaran, Bandung, West Java, Indonesia.
Department of Medicine, Faculty of Medicine, Universitas Negeri Yogyakarta, Depok, Central Jawa, Indonesia.
J Multidiscip Healthc. 2025 Jul 31;18:4497-4510. doi: 10.2147/JMDH.S533067. eCollection 2025.
Caregivers of patients with palliative and chronic conditions often experience complex physical, emotional, and social burdens. These burdens impact not only their well-being but also the continuity and quality of care provided.
This study aimed to identify the level of caregiver burden and factors associated with it in families caring for members with palliative conditions and chronic illnesses.
A cross-sectional study of 71 caregivers was conducted using convenience sampling. Data were collected using the FATCOD-B, knowledge toward palliative care, and Zarit Burden Interview (ZBI). Data were analyzed using the Rasch model and bivariate tests.
A high burden was reported by 50.7% of caregivers, while 39.4% and 9.9% experienced moderate and low burden, respectively. The variables of marital status, length of care, the availability of health insurance, and caregiver attitude showed a significant relationship to caregiver burden (<0.05). Rasch's analysis revealed that perceived loss of privacy was the statement with the lowest level of agreement. At the same time, feelings of not being optimal enough in providing care were the statement most frequently acknowledged by caregivers.
Psychosocial and structural factors influence caregiver burden. These findings highlight the need for integrated interventions, including psychosocial support, financial security, and caregiver education, to mitigate burden in this population.
姑息治疗患者和慢性病患者的照料者常常承受着复杂的身体、情感和社会负担。这些负担不仅影响他们自身的幸福，还影响所提供护理的连续性和质量。
本研究旨在确定照料患有姑息性疾病和慢性病成员的家庭中照料者的负担水平及其相关因素。
采用便利抽样法对71名照料者进行横断面研究。使用姑息治疗知识问卷（FATCOD-B）和Zarit照料者负担访谈量表（ZBI）收集数据。采用Rasch模型和双变量检验对数据进行分析。
50.7%的照料者报告负担较重，而分别有39.4%和9.9%的照料者经历中度和轻度负担。婚姻状况、照料时长、医疗保险的可获得性和照料者态度等变量与照料者负担存在显著关联（<0.05）。Rasch分析显示，隐私感丧失这一陈述的认可度最低。与此同时，照料者最常认可的陈述是觉得自己在提供护理方面做得不够好。
心理社会因素和结构因素会影响照料者负担。这些发现凸显了采取综合干预措施的必要性，包括心理社会支持、经济保障和照料者教育，以减轻这一人群的负担。
