University of the West of England, Bristol, United Kingdom.
Qual Health Res. 2011 Jun;21(6):771-82. doi: 10.1177/1049732311400431. Epub 2011 Feb 22.
Epidermolysis bullosa (EB) is a disease in which the skin blisters in response to minimal friction, causing painful wounds. Despite the potentially severe nature of epidermolysis bullosa, research on the psychosocial issues is scarce. The aims of the study were to explore the psychosocial impact of epidermolysis bullosa on affected adults and to identify associated support needs. We collected data using semistructured interviews and employed inductive thematic analysis to organize and analyze them. Three main themes—beliefs about containing the impact of EB, understandings of the disease, and the disabling impact of EB—describe the ways in which living with EB influences the daily lives of participants at intraindividual, interindividual, and sociocultural levels. The associated support needs ranged in type and intensity, from a preference for brief, skills-based interventions and the facilitation of peer support through to longer-term specialist psychological support. The results highlight how the particular combination of the rarity of the disease, its lifelong and hereditary nature, and its disfiguring impact on the skin differentiate epidermolysis bullosa from other chronic conditions.
大疱性表皮松解症（EB）是一种皮肤在受到轻微摩擦时就会起水疱的疾病，会导致疼痛的伤口。尽管大疱性表皮松解症可能性质严重，但针对其社会心理问题的研究却很少。本研究旨在探讨大疱性表皮松解症对成年患者的社会心理影响，并确定相关的支持需求。我们采用半结构式访谈收集数据，并采用归纳主题分析来组织和分析数据。三个主要主题——控制 EB 影响的信念、对疾病的理解和 EB 的致残影响——描述了 EB 对参与者在个体内部、个体之间和社会文化层面的日常生活的影响方式。相关的支持需求在类型和强度上各不相同，从对简短、基于技能的干预措施的偏好和通过同伴支持来促进，到长期的专业心理支持。研究结果突出了这种疾病的罕见性、其终身和遗传性以及对皮肤的毁容影响的独特组合如何使大疱性表皮松解症有别于其他慢性疾病。
