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- W3183100131 abstract "Epidermolysis Bullosa (EB) is the term used to describe a group of rare genetic skindisorders which result in the extreme susceptibility to blister following friction. EB is alifelong, life limiting condition present from birth. While a multidisciplinary approachto care is advocated, research indicates that service provision for patients with EB canbe disjointed, inaccessible and inequitable. In an effort to address shortcomings incurrent service provision, DEBRA Ireland is working towards the development of an EBCommunity Care Programme. A central feature of this programme is the developmentof an EB outreach nurse service which will focus on providing co-ordinated care forpatients, including community and home-based services. The School of Nursing andMidwifery at University College Dublin, in collaboration with the Dystrophic EpidermolysisBullosa Research Association (DEBRA) of Ireland was awarded funding from the IrishResearch Council ‘New Foundations’ Scheme, to conduct a study which would informthe development of this innovative nursing service. The primary aim of the study wasto determine how the role of the EB outreach nurse could be developed to meet thehealthcare needs of people with EB. A participatory action research approach was used to guide the development of theinvestigation. Consequently, a central feature of the research involved working inpartnership with a steering committee on the study’s research design." @default.
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- W3183100131 date "2018-07-01" @default.
- W3183100131 modified "2023-09-23" @default.
- W3183100131 title "Identifying the Optimum Role and Function of an Epidermolysis Bullosa (EB) Outreach Nurse" @default.
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