title: Living in dressings and bandages: findings from workshops with people with Epidermolysis bullosa.
abstract: Epidermolysis bullosa (EB) is an inherited disorder causing extensive, painful skin blistering and wounds. Currently, there is no cure and the focus of care is on the clinical management of the skin and other affected body systems, together with supportive care to individuals and families. The wound care for Epidermolysis bullosa (WEB) project is a collaboration with adults with EB, carers, clinical nurse specialists, a designer and manufacturers to develop novel products for EB wound care. This article reports the findings from workshops with adults with EB, their carers and clinical nurse specialists, together with observations of dressing changes. A cluster of significant limitations were revealed in the performance of wound care products, designed to cover a single wound, when they are used to cover extensive and whole body wounds. A working hypothesis for EB wound care was developed from the findings, together with design concepts and new products for EB wound care. In addition, a model of user engagement in medical device development and evaluation has been tested.
authors.affiliation: King's College London, Florence Nightingale School of Nursing and Midwifery, London SE1 8WA, UK. patricia.grocott@kcl.ac.uk
authors.forename: Patricia
authors.initials: P
authors.lastname: Grocott
authors.forename: Rebecca
authors.initials: R
authors.lastname: Blackwell
authors.forename: Heather
authors.initials: H
authors.lastname: Weir
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Pillay
mesh_terms: D001458:Bandages; D004820:Epidermolysis Bullosa / Q000523:psychology* / Q000628:therapy; D005500:Follow-Up Studies; D006801:Humans; D010353:Patient Education as Topic; D011788:Quality of Life; D014945:Wound Healing