Living with epidermolysis bullosa Daily challenges and health-care needs..pdf (338.94 kB)

Living with epidermolysis bullosa: Daily challenges and health-care needs.

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journal contribution
posted on 08.02.2021, 15:08 by Sandra Kearney, Ann Donohoe, Eilish McAuliffe

Background & objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health-care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB.

Setting and participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region.

Results: Participants' needs were grouped into five themes: support managing physical health-care issues; access to community/home-based services; EB-specific information and psychosocial support; effective interaction with health-care professionals; and advice regarding benefits and entitlements.

Discussion and conclusions: This article represents the health-care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition.

Funding

Irish Research Council. Grant Number: New Foundations Award No. 51040

History

Comments

The original article is available at https://onlinelibrary.wiley.com/

Published Citation

Kearney S, Donohoe A, McAuliffe E. Living with epidermolysis bullosa: Daily challenges and health-care needs. Health Expectations. 2020;23(2):368-376.

Publication Date

23 December 2019

PubMed ID

31868299

Department/Unit

  • RCSI Bahrain

Publisher

John Wiley & Sons Ltd.

Version

  • Published Version (Version of Record)

Licence

Exports

Royal College of Surgeons in Ireland

Licence

Exports