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Living with epidermolysis bullosa: Daily challenges and health‐care needs
- Source :
- Health Expectations, Vol 23, Iss 2, Pp 368-376 (2020), Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
- Publication Year :
- 2020
- Publisher :
- Wiley, 2020.
-
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.
- 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
Subjects
Details
- ISSN :
- 13697625 and 13696513
- Volume :
- 23
- Database :
- OpenAIRE
- Journal :
- Health Expectations
- Accession number :
- edsair.doi.dedup.....8d5b64919844248c8ddee3f138de5698