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dc.contributor.authorDonohoe, Ann
dc.contributor.authorKearney, Sandra
dc.contributor.authorMcAuliffe, Eilish
dc.descriptionEpidermolysis Bullosa (EB) is the term used to describe a group of rare genetic skin disorders which result in the extreme susceptibility to blister following friction. EB is a lifelong, life limiting condition present from birth. While a multidisciplinary approach to care is advocated, research indicates that service provision for patients with EB can be disjointed, inaccessible and inequitable. In an effort to address shortcomings in current service provision, DEBRA Ireland is working towards the development of an EB Community Care Programme. A central feature of this programme is the development of an EB outreach nurse service which will focus on providing co-ordinated care for patients, including community and home-based services. The School of Nursing and Midwifery at University College Dublin, in collaboration with the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) of Ireland was awarded funding from the Irish Research Council ‘New Foundations’ Scheme, to conduct a study which would inform the development of this innovative nursing service. The primary aim of the study was to determine how the role of the EB outreach nurse could be developed to meet the healthcare needs of people with EB. A participatory action research approach was used to guide the development of the investigation. Consequently, a central feature of the research involved working in partnership with a steering committee on the study’s research design.en_US
dc.description.sponsorshipIrish Research Council for funding this project as part of the ‘New Foundations’ scheme (Award No. 5104 0).en_US
dc.publisherSchool of Nursing, Midwifery and Health Systems at University College Dublin.en_US
dc.rightsAttribution-NonCommercial-NoDerivs 3.0 United States*
dc.titleIdentifying the Optimum Role and Function of an Epidermolysis Bullosa (EB) Outreach Nurseen_US
dc.contributor.departmentSchool of Nursing, Midwifery and Health Systems at University College Dublin.en_US

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