The Psychosocial Impact of Epidermolysis Bullosa

Abstract

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.