Skip to main content

Research Repository

Advanced Search

The psychosocial impact of Epidermolysis bullosa

Dures, Emma; Morris, Marianne; Gleeson, Kate; Rumsey, Nichola

Authors

Emma Dures Emma2.Dures@uwe.ac.uk
Professor in Rheumatology and Self-management

Marianne Morris

Kate Gleeson



Abstract

Epidermolysis bullosa (EB) is a disease in which the skin blisters in response to minimal friction, causing painful wounds. Despite the potentially severe nature of epidermolysis bullosa, research on the psychosocial issues is scarce. The aims of the study were to explore the psychosocial impact of epidermolysis bullosa on affected adults and to identify associated support needs. We collected data using semistructured interviews and employed inductive thematic analysis to organize and analyze them. Three main themes-beliefs about containing the impact of EB, understandings of the disease, and the disabling impact of EB-describe the ways in which living with EB influences the daily lives of participants at intraindividual, interindividual, and sociocultural levels. The associated support needs ranged in type and intensity, from a preference for brief, skills-based interventions and the facilitation of peer support through to longer-term specialist psychological support. The results highlight how the particular combination of the rarity of the disease, its lifelong and hereditary nature, and its disfiguring impact on the skin differentiate epidermolysis bullosa from other chronic conditions. © The Author(s) 2011.

Citation

Dures, E., Morris, M., Gleeson, K., & Rumsey, N. (2011). The psychosocial impact of Epidermolysis bullosa. Qualitative Health Research, 21(6), 771-782. https://doi.org/10.1177/1049732311400431

Journal Article Type Article
Publication Date Jun 1, 2011
Journal Qualitative Health Research
Print ISSN 1049-7323
Electronic ISSN 1552-7557
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 21
Issue 6
Pages 771-782
DOI https://doi.org/10.1177/1049732311400431
Keywords disfigurement, exploratory methods, hereditary diseases, illness and disease, experiences, interviews, semistructured, psychosocial issues
Public URL https://uwe-repository.worktribe.com/output/961868
Publisher URL http://dx.doi.org/10.1177/1049732311400431