Abstract:

Objective To explore the facilitators and barriers influencing home-based caregiving behaviors among caregivers of children with epidermolysis bullosa（EB） based on the Capability-Opportunity-Motivation-Behavior （COM-B） model，and to provide evidence for developing targeted home-based caregiving support and intervention strategies. Methods A descriptive qualitative study was conducted. From February to April 2025，12 caregivers of children with EB were recruited using purposive sampling and participated in semi-structured interviews. Directed content analysis was employed to categorize and synthesize the facilitators and barriers influencing caregiving behaviors. Results A total of 6 facilitators and 6 barriers were identified. Facilitators included：capability factors，namely the accumulation of preventive caregiving experience and the improvement of wound care skills through repeated practice；opportunity factors，informational and emotional support from peer groups and collaboration and shared responsibility among family members；motivation factors，active learning to alleviate children’s suffering and a sense of value derived from caregiving outcomes and children’s responses. Barriers included：capability factors，namely insufficient ability to translate caregiving knowledge into practice and inadequate ability to cope with caregiving needs across developmental stages；opportunity factors，limited accessibility of professional healthcare resources and restricted choices of care supplies under financial pressure；motivation factors，accumulated negative emotions during long-term home-based caregiving and temporary avoidance in home care. Conclusion The effective implementation of home-based caregiving for children with epidermolysis bullosa relies on the combined influence of caregivers’ capabilities，environmental support，and intrinsic motivation. Nursing professionals should provide stage-specific home care guidance during diagnosis and follow-up，promote family collaboration and professionally guided peer support，and offer timely feedback and emotional support，so as to facilitate the continuity and safety of caregiving behaviors.

Key words: Epidermolysis Bullosa, Caregivers, Caregiving Behaviors, Home-Based Care, Capability-Opportunity-Motivation-Behavior Model, Qualitative Study

摘要：

目的 基于能力、机会、动机-行为模型，探讨大疱性表皮松解症患儿照护者在居家环境中实施照护行为的促进因素及障碍因素，为构建针对性的居家照护支持与干预策略提供依据。方法 采用描述性质性研究方法，于2025年2—4月通过目的抽样法，选取12名大疱性表皮松解症患儿的照护者进行半结构式访谈。采用定向内容分析法对资料进行归类与提炼，提取照护行为的促进因素及障碍因素。结果 共提炼出12个亚主题，包括6个促进因素和6个障碍因素。促进因素包括：能力因素（预防性照护经验的积累、反复实践促进伤口护理操作熟练化）、机会因素（病友群体的信息与情感支持、家庭成员的协作与分担）、动机因素（为减轻患儿痛苦决定主动学习、照护成效与患儿回应带来的价值感）。障碍因素包括：能力因素（照护知识的实践转化能力欠缺、成长阶段照护应对能力不足）、机会因素（专业医疗资源可及性有限、经济压力下护理用品选择受限）、动机因素（长期居家照护下的负性情绪累积、居家照护中的暂时性回避）。结论 大疱性表皮松解症患儿居家照护行为的有效实施依赖照护者能力支持、照护环境条件及内在动机的共同作用。护士应在确诊及随访阶段提供分阶段居家护理指导，促进家庭协作与专业引导下的同伴支持，并通过及时反馈与情绪支持，促进照护行为的持续与安全实施。

关键词: 大疱性表皮松解症, 照护者, 照护行为, 居家护理, 能力、机会、动机-行为模型, 质性研究