Du Yuchen, Wang Aixiao, Wang Chunjie, Chen Yanyan, Lin Yaoyao
National Clinical Research Center for Ocular Diseases, Eye Hospital, Wenzhou Medical University, 270 West College Road, Wenzhou, Zhejiang, 325027, China.
BMC Nurs. 2025 Jul 3;24(1):833. doi: 10.1186/s12912-025-03495-x.
Congenital cataracts are one of the leading causes of visual impairment and blindness in children, and treatment and rehabilitation are highly dependent on family caregivers. However, research on the caregiver burden experience for children with congenital cataracts in China is limited. In particular, a systematic exploration from the perspective of social ecosystem theory is lacking. This study aimed to gain insight into the burden on family caregivers of children with congenital cataracts in China and to provide a theoretical basis for the development of systematic intervention strategies.
On the basis of social ecosystem theory and a phenomenological research design, this study recruited family caregivers of children with congenital cataracts for semistructured interviews from December 2024 to January 2025 at a tertiary eye hospital in Hangzhou, China. Colaizzi's 7-step analysis method was used to analyse the interview data.
Three themes and nine subthemes emerged from the analyses: (1) micro system: emotional stress and adaptive challenges (subthemes: emotional fluctuations under disease uncertainty, perceived and experienced stigma of illness, challenges of lacking care skills); (2) mezzo system: family life difficulties under disease shocks (subthemes: the personal cost in social and professional sacrifices, conflicts experienced in tense family relationships, family financial burdens); and (3) macro system: weakness of the support system (subthemes: anxiety and endeavors amidst healthcare resource scarcity, active exploration and confusion under information insufficiency, active search for help and limited school support).
This study is the first to systematically reveal the multiple challenges faced by family caregivers of children with congenital cataracts in China in the micro, mezzo and macro systems from the perspective of social ecosystem theory. Future research should pay attention to the mental health of family caregivers, actively construct family-centred intervention strategies, and comprehensively consider the role of the social support system to better meet the needs of children with congenital cataracts and their family caregivers.
Not applicable.
先天性白内障是儿童视力损害和失明的主要原因之一，治疗和康复高度依赖家庭照顾者。然而，中国关于先天性白内障患儿照顾者负担体验的研究有限。特别是，缺乏从社会生态系统理论角度的系统探索。本研究旨在深入了解中国先天性白内障患儿家庭照顾者的负担，并为制定系统干预策略提供理论依据。
基于社会生态系统理论和现象学研究设计，本研究于2024年12月至2025年1月在中国杭州一家三级眼科医院招募先天性白内障患儿的家庭照顾者进行半结构化访谈。采用Colaizzi的七步分析法对访谈数据进行分析。
分析得出三个主题和九个次主题：（1）微观系统：情绪压力和适应挑战（次主题：疾病不确定性下的情绪波动、疾病的感知和经历的污名、缺乏护理技能的挑战）；（2）中观系统：疾病冲击下的家庭生活困难（次主题：社会和职业牺牲中的个人代价、紧张家庭关系中经历的冲突、家庭经济负担）；（3）宏观系统：支持系统的薄弱（次主题：医疗资源稀缺中的焦虑与努力、信息不足下的积极探索与困惑、积极寻求帮助与学校支持有限）。
本研究首次从社会生态系统理论角度系统揭示了中国先天性白内障患儿家庭照顾者在微观、中观和宏观系统中面临的多重挑战。未来研究应关注家庭照顾者的心理健康，积极构建以家庭为中心的干预策略，并综合考虑社会支持系统的作用，以更好地满足先天性白内障患儿及其家庭照顾者的需求。
不适用。
