Exploring the occupational experiences of individuals living with Epidermolysis Bullosa (EB)

Background: EB is a rare genetic disease characterised by skin fragility. There are approximately 300 people living with EB in Ireland. The majority of services provided for these individuals are hospital based, as there is a need for continuous medical intervention with this condition. Most of the research conducted to date is biomedical based, focusing on finding a cure for EB. However, for individuals living with EB, this condition undoubtedly impacts on their occupational performance, choices relating to meaningful occupation and reaching occupational potential. This qualitative research sought to explore the occupational experiences of individuals and their families based on the support services available. Method: This study is part of a participatory action research study, in partnership with Debra Ireland, to explore evidence based on qualitative research from key stakeholder perspectives of support services. Seven participants, made up of individuals with EB (n=4) and family members (n=3) were recruited for individual semi-structure in-depth interviews. Results: Thematic analysis revealed that participants’ daily occupational experiences remain intact, and are a priority for them. However, two key issues emerged relating to service level knowledge about EB and access to bandages, which is a primary need of this population. Conclusions: This paper presents insights of living with this rare disease through an occupational lens. It highlights how exposure to services impacts on participant’s use of and confidence in support services, which can impact negatively on the individual’s occupational experience.