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Title: An exploration of the psychosocial impact of epidermolysis bullosa on the daily lives of affected adults and identification of associated support needs
Author: Dures, Emma K.
Awarding Body: University of the West of England, Bristol
Current Institution: University of the West of England, Bristol
Date of Award: 2009
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Abstract:
Epidermolysis Bullosa (EB) is the term used to describe a number of genetically determined disorders characterised by excessive susceptibility of the skin and mucosae to separate from the underlying tissue following mechanical trauma. EB is a rare, life-long and non-curable condition. At its clinically mildest, the blistering occurs on the hands and/or feet and makes holding things and walking extremely painful. In clinically more severe forms, all the body is affected and the wounds heal slowly, giving rise to scarring, an altered physical appearance and significant disability. Despite the potentially severe and restrictive nature of EB, there has been scarcely any published research on its psychosocial impact. However, anecdotal evidence has suggested that those affected can face considerable challenges in their daily lives. This research was undertaken to address the deficit of empirical evidence concerning the ways and extent to which living and working with EB can affect individuals' social, emotional and psychological wellbeing and to identify unmet support needs. Given the exploratory nature of the thesis, a qualitatively-driven mixed method design was employed. A total of four studies were undertaken. The first two studies used an inductive approach. They produced wide-ranging, multi-level data about the many ways in which EB can impact on the daily lives of affected adults and also informed the subsequent quantitative study. The third study used a deductive approach. It examined the role of specific psychosocial variables that had been implicated in the qualitative data in relation to the psychological wellbeing of adults with EB. The fourth study employed mixed methods to explore the impact of working in the field on specialist EB professionals, as understanding their perceptions and experiences is an important aspect of effective care provision. In the final stage of the research, the support needs of adults with EB and EB specialist professionals were identified. Initial recommendations have been made for ways of meeting these needs based on findings from the four studies evaluated in the context of the existing chronic conditions and skin conditions literature.
Supervisor: Not available Sponsor: Not available
Qualification Name: Not available Qualification Level: Doctoral
EThOS ID: uk.bl.ethos.522538  DOI: Not available
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