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Living with epidermolysis bullosa: Daily challenges and health‐care needs.
- Source :
- Health Expectations; Apr2020, Vol. 23 Issue 2, p368-376, 9p
- Publication Year :
- 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. [ABSTRACT FROM AUTHOR]
- Subjects :
- ACTION research
CAREGIVERS
COMMUNICATION
COMMUNITY health services
EPIDERMOLYSIS bullosa
HEALTH services accessibility
HEALTH status indicators
INTERVIEWING
RESEARCH methodology
MEDICAL care
MEDICAL needs assessment
NEEDS assessment
PARENTS
PATIENTS
RESEARCH
RESEARCH funding
QUALITATIVE research
SOCIAL support
THEMATIC analysis
HUMAN services programs
PHYSICAL activity
DATA analysis software
MEDICAL coding
ADULTS
Subjects
Details
- Language :
- English
- ISSN :
- 13696513
- Volume :
- 23
- Issue :
- 2
- Database :
- Complementary Index
- Journal :
- Health Expectations
- Publication Type :
- Academic Journal
- Accession number :
- 142479597
- Full Text :
- https://doi.org/10.1111/hex.13006