Project’s duration: 01-Jan-17 to 30-Sep-17
The project is funded by Irish Research Council (IRC). Programme: New Foundations Award
Epidermolysis Bullosa is a complex genetic disorder that affects 1 in 18,000 live births in Ireland. An analysis of EB support services highlights the need for an EB outreach nursing service. Consequently, a two-stage participatory action research study has been designed to guide the development of this initiative. Stage one will identify the optimum role of an EB outreach nurse while stage two will assess the impact of the EB outreach nurse programme on patients and families.
The findings of this study will be used to inform the development of EB nursing services both nationally and internationally. It is also particularly unique, as it is the only study of its kind specifically designed to explore the EB outreach nursing service from the perspective of the key stake holders. The findings will inform future governmental policy and drive the necessary changes in EB home support services from a practice, education and research perspective. This model of care, if successful, will also serve as a template for knowledge dissemination and community-based support for other rare diseases and conditions.
This research project is developed in partnership with DEBRA Ireland .