Examining the occupational perspectives of hospital-based support services for people with Epidermolysis Bullosa (EB) in Ireland

Background: EB is a very rare genetic disorder characterized by blistering of the skin. In Ireland EB affects approximately 1 in 20,000 newborn children. Undoubtedly a condition such as EB has diverse effects on both patients and their carers. However currently there is little evidence of the effects EB can have on professionals working with the condition. Objectives: This research endeavoured to explore the occupational perspectives of hospital-based professionals working with people with EB and identifies their view on current services available and highlights areas for possible change. Methods: This study is one section of an innovative participatory action research study to explore evidence based on qualitative research in partnership with Debra Ireland from key stakeholder perspectives of support services. Nine individuals were recruited from hospital-based services to take part in semi-structured interviews Results: Thematic analysis highlighted that participants experienced both positive and negative aspects of working in hospital-based services for people living with EB. They experienced financial, bureaucratic and emotional challenges and each highlighted specific areas in need of change in order for the service to develop. Conclusion: This paper presents an insight of professionals’ experiences of working with this rare condition and highlights areas identified in need of change. Participants acknowledged their passion for working in the area but discussed the feeling of powerlessness and lacking a voice when it came to the need for changes in service provision.