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Title: A qualitative study of the experiences of children and young people with Epidermolysis Bullosa
Author: Williams, Felicity
ISNI:       0000 0004 2700 5872
Awarding Body: University of East London
Current Institution: University of East London
Date of Award: 2008
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Background: Very little literature exists regarding children's experiences of Epidermolysis Bullosa (EB). Existing research indicates that EB can have a negative impact on children's self esteem, quality of life, and social relationships. However most of the research in this area has been undertaken with parents of children with the condition and utilises quantitative methodology, and measures of psychological adjustment. Aim: The present study aimed to explore this hitherto largely neglected population, through the use of qualitative methods to investigate the experiences of young people with EB. Method: 11 young people with EB were selected from one hospital in the UK. Participants were interviewed individually, or with their parents present, according to their expressed preference. Transcripts were analysed using Interpretative Phenomenological Analysis (IPA). Results: Analysis resulted in four superordinate themes, which highlighted different aspects of participants' experiences of living with EB: The Self as Different; Physical Activity and Identity; Dependence and Independence; and Coping. Conclusions: The present study provides a detailed account of young people's experiences of EB and furthers understanding of a little researched area. Participants' accounts have highlighted 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. In addition, the present study highlights the extent to which young people with EB can contribute knowledge.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psych.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available