Objective: To explore the lived experience of individuals with chronic wounds associated with dystrophic and junctional epidermolysis bullosa (EB), to improve understanding and, therefore, enhance the care provided to this group of patients by acquiring in depth data on the psychosocial issues that affect them. Method: A phenomenological study using interpretive phenomenological analysis was employed. A purposive sampling method was used with six individuals replying to postal invitation to participate. Results: Following one-to-one interviews, six superordinate themes were identified. These were: coping, pain, perceptions, emotional impact, social impact and support network, each with subordinate themes. All of the superordinate themes have been identified by previous research into chronic wounds, burns and disfiguring conditions; however, new subordinate themes arose. Conclusion: This study highlighted the need for individuals with EB to have a multidisciplinary approach to their care with a particular need for pain management, psychological intervention and nursing support from those whom clients perceive as understanding the requirements of patients with EB. Further research into identity issues in individuals with EB is advocated. Declaration of interest: There were no external sources of funding for this study. The authors have no conflicts of interest to declare.
