Please use this identifier to cite or link to this item: http://hdl.handle.net/2440/111196
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dc.contributor.authorStevens, L.en
dc.contributor.authorMcKenna, S.en
dc.contributor.authorMarty, J.en
dc.contributor.authorCowin, A.en
dc.contributor.authorKopecki, Z.en
dc.date.issued2016en
dc.identifier.citationInternational wound journal, 2016; 13(5):863-869en
dc.identifier.issn1742-4801en
dc.identifier.issn1742-481Xen
dc.identifier.urihttp://hdl.handle.net/2440/111196-
dc.description.abstractEpidermolysis bullosa (EB) consists of a spectrum of genodermatoses characterised by skin fragility and various degrees of skin and mucous membrane blistering. Minimal trauma and friction can cause extensive blistering in patients with EB, resulting in a number of complications. However, wound management is the main challenge for these patients because of a high risk of infection, fluid loss and potential development of aggressive squamous cell carcinoma (SCC). Indeed, patients with EB have an increased risk for developing skin cancers compared to the general population. In 2012, a home nursing programme was established in Australia to provide assistance to families or patients with severe forms of EB. Nursing care was provided to patients with severe EB during dressing changes in their homes over a period of 2 years. Both families of patients and nurses were surveyed periodically using a developed questionnaire to assess the benefits of this home nursing and its impact on the patients, their families and the nurses. Key findings included a perceived improvement in quality of life, a better provision of support and improved family life management. These findings are the first to highlight the benefits of this national home nursing programme for EB patients within Australia and demonstrate the continued need and benefit of home nursing for patients with severe skin blistering disorders.en
dc.description.statementofresponsibilityLouise J Stevens, Sue McKenna, Jennifer Marty, Allison J Cowin and Zlatko Kopeckien
dc.language.isoenen
dc.publisherWileyen
dc.rights© 2014 Medicalhelplines.com Inc and John Wiley & Sons Ltden
dc.subjectEpidermolysis bullosa; home nursing; wound managementen
dc.titleUnderstanding the outcomes of a home nursing programme for patients with epidermolysis bullosa: an Australian perspectiveen
dc.typeJournal articleen
dc.identifier.rmid0030028617en
dc.identifier.doi10.1111/iwj.12394en
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/1036509en
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/1002009en
dc.identifier.pubid163974-
pubs.library.collectionMedicine publicationsen
pubs.library.teamDS14en
pubs.verification-statusVerifieden
pubs.publication-statusPublisheden
dc.identifier.orcidCowin, A. [0000-0003-2885-2080]en
dc.identifier.orcidKopecki, Z. [0000-0002-8072-4222]en
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