“It is such an all-encompassing condition to have”: Investigating the experiences and perceptions of community service providers who work with people with Epidermolysis Bullosa (EB) in Ireland

Background: Epidermolysis Bullosa (EB) is a rare genetic condition, resulting in painful blistering of the skin. The two main specialised hospital services for those with EB are located in Dublin. Community services are provided nationally. The multi disciplinary team, who encourage a person’s occupational engagement, also deal with wound care, nutritional status, bathing regimes, pain management and psychological support for the client and family. Many professionals find that this possesses a variety of challenges. Objectives: As one component of innovative participatory action research exploring the development of a support service strategy for people with EB in Ireland, this study aimed to investigate the experiences and perceptions of Irish community service providers, working with people with EB. Methods: Semi-structured interviews sought to identify nine community service providers’ aims, interests and motives for service involvement, establish positive and challenging aspects of the system, and inform future service development. Results: Following thematic analysis, four themes emerged: 1) Aspects of Time, 2) Tools for Preparation, 3) Emotional Impact on Professionals, 4) Importance of Relationships Conclusions: The participants acknowledge the importance of building relationships of trust with the patients, their families and other professionals. Community service providers may only work with one or two people with EB, however the physical and emotional support required for this group needs to be fully understood and recognised. There is need for evidence-based, timely training and preparation, and continued supervision and support for these professionals, for them to do justice for people with EB in Ireland.