BACKGROUND Epidermolysis bullosa (EB) is a rare genetic disease that soon becomes apparent after a child's birth. Mechanical stress in particular causes painful skin-blistering that potentially leads to numerous complications. Dressing materials fulfill important functions for children with EB: they help protect the skin, but create problems at the same time. OBJECTIVE The study focuses on the experiences with dressing materials among parents and affected children. The exploration of individual experiences and the presentation of successful strategies to deal with problems is intended to contribute to a better understanding of the advantages and disadvantages of different dressing materials. MATERIALS AND METHOD Following a qualitative research approach, eight semi-structured interviews were conducted with N = 13 persons. For analysis, a structured qualitative content analysis with an inductive/deductive approach for setting up the final categories was chosen. RESULTS The use of dressing materials in the context of a dressing change is a key issue for parents and affected children. Five main categories were identified: the child's individuality; problems of use; the adjustment process; parents' expertise; organization of materials. In a continuous process, parents acquire specific knowledge and skills that enable a good fit between the dressing materials and their child and contribute to their own handling confidence. CONCLUSION With their action-oriented expertise, parents can avoid additional skin damage caused during dressing changes. Here, the focus is on technical skills that lead to more comfort for the affected child and help parents to meet the challenge of dressing changes. Regarding the child's development, parents are continually confronted with new challenges and must adapt their old, or develop new, strategies.

中文翻译：

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儿童大疱性表皮松解症材料

背景大疱性表皮松解症 (EB) 是一种罕见的遗传疾病，在孩子出生后很快就会显现出来。机械应力尤其会导致疼痛的皮肤起泡，这可能会导致许多并发症。敷料对患有 EB 的儿童具有重要作用：它们有助于保护皮肤，但同时也会产生问题。目标 本研究侧重于父母和受影响儿童使用敷料材料的经验。对个人经验的探索和解决问题的成功策略的介绍旨在有助于更好地了解不同敷料材料的优缺点。材料和方法 根据定性研究方法，对 N = 13 人进行了八次半结构化访谈。为了分析，选择了使用归纳/演绎方法的结构化定性内容分析来设置最终类别。结果 更换敷料时使用敷料是父母和受影响儿童的关键问题。确定了五个主要类别：儿童的个性；使用问题；调整过程；父母的专业知识；材料的组织。在一个持续的过程中，父母获得了特定的知识和技能，这些知识和技能能够使敷料材料与他们的孩子之间很好地契合，并有助于他们对自己的处理信心。结论 凭借他们以行动为导向的专业知识，父母可以避免在换药过程中造成额外的皮肤损伤。这里，重点是技术技能，可以让受影响的孩子更加舒适，并帮助父母应对更衣的挑战。关于孩子的发展，父母不断面临新的挑战，必须调整他们的旧策略或开发新策略。