A Qualitative Study of the Experiences of Children and Young People with Epidermolysis Bullosa.

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.

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