Aldas Sefika, Ersoy Murat, Durukan Tosun Mehtap, Ozgokce Ozmen Berfin, Tunc Ali, Sahin Sanliay
Department of Pediatrics, University of Health Sciences, Mersin City Education and Research Hospital, 33800 Mersin, Turkey.
Healthcare (Basel). 2025 Jul 2;13(13):1583. doi: 10.3390/healthcare13131583.
Pediatric palliative care (PPC) is an evolving field that focuses on supporting children with life-limiting conditions, where the quality of care is vital. This study is a retrospective observational investigation that examines the experiences of caregivers to inform health and social service planning and enhance PPC quality. Data of pediatric patients aged 3 months to 18 years admitted to a PPC inpatient unit over two years were retrospectively reviewed. Sociodemographic characteristics of primary caregivers, including age, gender, number of siblings, education, income, occupation, and marital status, were recorded. Caregiver burden and burnout were assessed using the Zarit Burden Interview and the Maslach Burnout Inventory, respectively. Associations between caregiver characteristics and these measures were analyzed. A total of 118 patients and caregivers were evaluated; 54.2% of patients were male. The most common diagnoses were neurological diseases (44.9%), followed by syndromic-genetic disorders (28.8%). About 34% of patients required more than three medical devices. Most caregivers were female (91.5%), mainly mothers and 53% had only primary education. No significant differences in care burden or burnout were found based on caregiver gender, marital status, or child's diagnosis. However, the use of nasogastric tubes and multiple medical devices was associated with higher burnout. Lower income was significantly linked to higher care burden, while longer caregiving duration correlated with both increased burden and burnout. A moderate positive correlation was found between Zarit and Maslach scores. The complexity of PPC patients' care increases caregiver burden and burnout. Expanding specialized PPC services is crucial to support caregivers and sustain home-based care.
儿科姑息治疗（PPC）是一个不断发展的领域，专注于为患有危及生命疾病的儿童提供支持，在这种情况下，护理质量至关重要。本研究是一项回顾性观察调查，旨在探究护理人员的经历，为健康和社会服务规划提供信息并提高PPC质量。对两年内入住PPC住院病房的3个月至18岁儿科患者的数据进行了回顾性审查。记录了主要护理人员的社会人口学特征，包括年龄、性别、兄弟姐妹数量、教育程度、收入、职业和婚姻状况。分别使用扎里特负担访谈量表和马氏职业倦怠量表评估护理人员的负担和倦怠情况。分析了护理人员特征与这些指标之间的关联。共评估了118名患者及其护理人员；54.2%的患者为男性。最常见的诊断是神经系统疾病（44.9%），其次是综合征性遗传疾病（28.8%）。约34%的患者需要三种以上的医疗设备。大多数护理人员为女性（91.5%），主要是母亲，53%只有小学文化程度。基于护理人员的性别、婚姻状况或孩子的诊断，未发现护理负担或倦怠有显著差异。然而，鼻胃管的使用和多种医疗设备的使用与更高的倦怠相关。低收入与更高的护理负担显著相关，而更长的护理时长与负担和倦怠的增加均相关。扎里特量表和马氏量表得分之间存在中度正相关。PPC患者护理的复杂性增加了护理人员的负担和倦怠。扩大专门的PPC服务对于支持护理人员和维持家庭护理至关重要。
