Ceylan Ali, Demirdel Ertuğrul
Karamanoğlu Mehmetbey University, Department of Therapy and Rehabilitation, Karaman, Turkey.
Ankara Yıldırım Beyazıt University, Department of Physiotherapy and Rehabilitation, Ankara, Turkey.
J Pediatr Nurs. 2025 Jul-Aug;83:106-113. doi: 10.1016/j.pedn.2025.04.022. Epub 2025 May 2.
The study was planned to investigate the resilience and care burden of caregiving parents in Turkey.
Demographic and descriptive characteristics were recorded. Psychological resilience was assessed using the Brief Resilience Scale (BRS) and caregiving burden was assessed using the Zarit Caregiving Burden Scale (ZCBS). Independent Sample t-test and ANOVA Mann-Whitney U and Kruskall Wallis tests were used to analyze the data.Multivariate variance analysis was performed with post-hoc tests to determine the differences between the groups. Significance p < 0.05 was accepted.
A total of 112 caregivers, 97 of whom were women, with a mean age of 39.84 ± 10.73 years, participated in the study. The mean age of with children with special healthcare needs was 10.83 ± 8.56 years, 61.6 % were male, and 42.9 % had both physical and mental disabilities. In children with special health needs, 41.1 % had mobility limitations, 43.8 % had communication problems, 44.6 % had learning problems and 31.3 % had nutritional problems. The level of mobility limitation, communication, learning and nutrition problems in children with special healthcare needs and the presence of chronic disease or musculoskeletal system problems in caregivers were found to be associated with care burden (p < 0.05). Psychological resilience of caregivers of those with moderate care burden was lower than those with mild care burden (p < 0.05). There was a negative, moderately significant relationship between caregivers' psychological resilience and care burden (r = -0.356; p < 0.001).
New strategies should be developed to increase psychological resilience and reduce the burden of care in caregivers of complex children with special healthcare needs.
The lived experience of caregivers who support children with special healthcare needs can be improved with psychological and practical care support from health professionals.
本研究旨在调查土耳其照顾子女的父母的心理韧性和照顾负担。
记录人口统计学和描述性特征。使用简易心理韧性量表（BRS）评估心理韧性，使用 Zarit 照顾负担量表（ZCBS）评估照顾负担。采用独立样本 t 检验、方差分析、Mann-Whitney U 检验和 Kruskall Wallis 检验分析数据。进行多变量方差分析及事后检验以确定组间差异。以 p < 0.05 为有统计学意义。
共有 112 名照顾者参与研究，其中 97 名女性，平均年龄为 39.84 ± 10.73 岁。有特殊医疗需求儿童的平均年龄为 10.83 ± 8.56 岁，61.6% 为男性，42.9% 有身体和精神残疾。在有特殊健康需求的儿童中，41.1% 有行动限制，43.8% 有沟通问题，44.6% 有学习问题，31.3% 有营养问题。发现有特殊医疗需求儿童的行动限制、沟通、学习和营养问题水平以及照顾者是否存在慢性病或肌肉骨骼系统问题与照顾负担相关（p < 0.05）。中度照顾负担者的照顾者心理韧性低于轻度照顾负担者（p < 0.05）。照顾者的心理韧性与照顾负担之间存在负向、中度显著的关系（r = -0.356；p < 0.001）。
应制定新策略以提高有特殊医疗需求的复杂儿童照顾者的心理韧性并减轻其照顾负担。
健康专业人员提供的心理和实际护理支持可以改善照顾有特殊医疗需求儿童的照顾者的生活体验。
