Huang Jiali, Huang Xi, Liu Ruru, Dai Jingyao, Chen Yijie, Zhang Xiaoxian, Chen Yanyan, Wang Yuqin
School of Ophthalmology and Optometry, Wenzhou Medical University, Wenzhou, 325027, China.
National Clinical Research Center for Ocular Diseases, Eye Hospital, Wenzhou Medical University, 270 West Xueyuan Road, Wenzhou, Zhejiang, 325027, China.
BMC Nurs. 2024 Dec 19;23(1):929. doi: 10.1186/s12912-024-02602-8.
Long-term, potentially lifelong therapy is needed to treat noninfectious uveitis (NIU) in children. Previous research has focused primarily on treatment approaches, but few studies have investigated the effect of children's chronic illness on other family members. The aim of this study is to explore the experiences of burden and needs in caregivers of children with NIU, and to provide a reference for formulating targeted intervention strategies.
A total of 11 caregivers of children with NIU were recruited from a tertiary-level eye hospital in Wenzhou Province, China. For data collection, semi-structured interviews were conducted. Data analysis was conducted using Colaizzi's seven-step analysis method. Themes were encoded and created with NVivo 14.0 for Mac software.
Based on the Social Ecosystem Theory, three major themes and ten subthemes emerged from the analysis: (1) Micro system - Caregiver distress and growth coexist (subthemes: Affected physical health, difficulties in the child's health management, emotional well-being, psychological Adjustment and Growth); (2) Mezzo system - Changes in family lifestyle (subthemes: Family financial challenges, family management dilemmas, weakened family socialization); (3) Macro system - Weak support system (subthemes: Insufficient information support, limited medical support conditions, lack of social understanding and support).
The social-ecological systems of caregivers for children with NIU present numerous difficulties impacting their caregiving experiences. It is imperative for healthcare providers to address the psychosocial issues faced by caregivers and to develop family-centered intervention strategies and support systems, enabling them to cope effectively and overcome challenges.
治疗儿童非感染性葡萄膜炎（NIU）需要长期、甚至可能是终身治疗。以往的研究主要集中在治疗方法上，但很少有研究调查儿童慢性病对其他家庭成员的影响。本研究旨在探讨NIU患儿照顾者的负担体验和需求，为制定针对性的干预策略提供参考。
从中国浙江省温州市一家三级眼科医院招募了11名NIU患儿的照顾者。通过半结构式访谈收集数据。采用Colaizzi七步分析法进行数据分析。使用适用于Mac的NVivo 14.0软件对主题进行编码和创建。
基于社会生态系统理论，分析得出三个主要主题和十个子主题：（1）微观系统——照顾者的痛苦与成长并存（子主题：身体健康受影响、儿童健康管理困难、情绪健康、心理调适与成长）；（2）中观系统——家庭生活方式的改变（子主题：家庭经济挑战、家庭管理困境、家庭社会化减弱）；（3）宏观系统——支持系统薄弱（子主题：信息支持不足、医疗支持条件有限、社会理解与支持缺乏）。
NIU患儿照顾者的社会生态系统存在诸多困难，影响他们的照顾体验。医疗保健提供者必须解决照顾者面临的心理社会问题，制定以家庭为中心的干预策略和支持系统，使他们能够有效应对并克服挑战。
