The experiences of young people with epidermolysis bullosa simplex: a qualitative study

Article

Williams, E. Felicity, Gannon, K. and Soon, Kristina 2011. The experiences of young people with epidermolysis bullosa simplex: a qualitative study. Journal of Health Psychology. 16 (5), pp. 701-710.
AuthorsWilliams, E. Felicity, Gannon, K. and Soon, Kristina
Abstract

Objective: To explore the experiences of young people with Epidermolysis Bullosa Simplex (EBS).
Method: 11 participants aged 10 -14 years were interviewed. Interpretative Phenomenological Analysis was employed.
Results: A key theme was ‘self as different’. This related to experiences of negative treatment and exclusion from peers; a lack of understanding of others about the condition; and a sense of the self as ‘wrong’.
Conclusions: Findings indicate the importance of providing appropriate psychological and peer support, as well as wider community education and intervention, as part of the holistic treatment of young people with this chronic, painful and visible skin condition.

Keywordsepidermolysis bullosa; children; chronic conditions; Interpretative Phenomenological Analysis
JournalJournal of Health Psychology
Journal citation16 (5), pp. 701-710
Year2011
Accepted author manuscript
License
CC BY-ND
Web address (URL)http://hdl.handle.net/10552/1571
Publication dates
Print25 Mar 2011
Publication process dates
Deposited30 Apr 2012
Additional information

Citation:
Williams, E.F., Gannon, K.N. and Soon, K. (2011) 'The experiences of young people with Epidermolysis Bullosa Simplex: A qualitative study'. Journal of Health Psychology, 16(5), pp. 701-710, doi: 10.1177/1359105310387954.

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License: CC BY-ND

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