Department of Dermatology, University Medical Center Groningen, Hanzeplein 1, NL-9700 RB Groningen, The Netherlands.
Acta Derm Venereol. 2019 Jul 1;99(9):783-788. doi: 10.2340/00015555-3179.
Epidermolysis bullosa (EB) is a group of rare inherited bullous skin disorders that differ in nature and severity. Currently, there is no cure for the disease. One of the complex problems of EB is the repetitive and painful care of skin wounds. The purpose of this study was to explore how adult patients and parents experienced the impact of wound care during childhood and which coping strategies they considered as helping. A qualitative study was performed, comprising semi-structured in-depth interviews with 7 adult patients and 6 parents. The impact, physically, psychologically and on daily life, was apparent for patients and parents. Helpful coping strategies were transferring care, regulating emotions, and dyadic strategies, such as supporting each other by distraction, encouragement, using rituals and collaboration. The most important finding of this study is the need for a more thorough investigation into the effectiveness of dyadic coping strategies.
大疱性表皮松解症（EB）是一组罕见的遗传性大疱性皮肤疾病，其性质和严重程度不同。目前，这种疾病还无法治愈。EB 的一个复杂问题是皮肤伤口的反复和疼痛护理。本研究旨在探讨成年患者和父母在儿童时期如何体验伤口护理的影响，以及他们认为哪些应对策略有帮助。这是一项定性研究，包括对 7 名成年患者和 6 名父母进行半结构化深入访谈。患者和父母都明显感受到了身体、心理和日常生活方面的影响。有帮助的应对策略包括转移护理、调节情绪，以及对偶策略，如通过分散注意力、鼓励、使用仪式和协作来相互支持。本研究的一个重要发现是，需要更深入地研究对偶应对策略的有效性。
