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...