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'You're whatever the patient needs at the time'; The impact on health and social care professionals of supporting people with epidermolysis bullosa

Morris, Marianne; Dures, E.; Gleeson, Kate; Rumsey, N.

Authors

Marianne Morris

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

Kate Gleeson



Abstract

Objectives: Professionals working with people who encounter pain and suffering can experience adverse emotional effects themselves. However, to provide effective support it is necessary to understand specific work-related experiences and contexts. This study investigated the impact on professionals of supporting people with the skin condition 'epidermolysis bullosag'. Methods: A two-part mixed methods design was utilized. Part one comprised interviews with specialist nursing and social care professionals (n = 7). Part two comprised a survey administered to a range of EB specialist professionals (n = 26). Results: The interview data were analysed inductively and informed the survey design. The survey data were analysed deductively and compared to the interview findings. Three integrated themes were subsequently depicted: the intensity and depth of involvement; managing with limited resources; and the need to look after yourself. Discussion: Findings show the ways in which the work can affect well-being and how the impact is intensified by the low numbers of specialist professionals in the field. But the support of team members, access to effective supervision and the rewards of working with a remarkable population make the professional role worthwhile. Adequate clinical supervision, skills training and access to multi-disciplinary expertise were all highlighted as beneficial for well-being. © The Author(s), 2010.

Citation

Dures, E., Morris, M., Gleeson, K., & Rumsey, N. (2010). 'You're whatever the patient needs at the time'; The impact on health and social care professionals of supporting people with epidermolysis bullosa. Chronic Illness, 6(3), 215-227. https://doi.org/10.1177/1742395310377006

Journal Article Type Article
Publication Date Sep 1, 2010
Journal Chronic Illness
Print ISSN 1742-3953
Electronic ISSN 1745-9206
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 6
Issue 3
Pages 215-227
DOI https://doi.org/10.1177/1742395310377006
Keywords health and social care, epidermolysis bullosa, patient care
Public URL https://uwe-repository.worktribe.com/output/984607
Publisher URL http://dx.doi.org/10.1177/1742395310377006