1. Living with epidermolysis bullosa: Daily challenges and health‐care needs
- Author
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Ann Donohoe, Eilish McAuliffe, and Sandra Kearney
- Subjects
Adult ,Parents ,Gerontology ,Population ,barriers to care ,03 medical and health sciences ,Broad spectrum ,0302 clinical medicine ,Skin fragility ,Health care ,medicine ,Humans ,030212 general & internal medicine ,Epidermolysis bullosa ,Child ,education ,Service (business) ,lcsh:R5-920 ,education.field_of_study ,business.industry ,lcsh:Public aspects of medicine ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,lcsh:RA1-1270 ,medicine.disease ,Psychosocial support ,Original Research Paper ,health‐care needs ,Distress ,Caregivers ,lived experience ,Health Facilities ,lcsh:Medicine (General) ,0305 other medical science ,business ,Psychology ,Delivery of Health Care ,Original Research Papers - Abstract
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.
- Published
- 2020