Keziah Austin
Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals' perspectives
Austin, Keziah; Robson, Joanna C.; Shepherd, Michael; Harper, Lorraine; Ndosi, Mwidimi; Flurey, Caroline; Logan, Sarah; Dures, Emma
Authors
Jo Robson Jo.Robson@uwe.ac.uk
Consultant Associate Professor in Rheumatology
Michael Shepherd
Lorraine Harper
Dr Mwidimi Ndosi Mwidimi.Ndosi@uwe.ac.uk
Associate Professor in Nursing Rheumatology
Caroline Flurey Caroline2.Flurey@uwe.ac.uk
Associate Professor in Men's Health and Long-term Conditions
Sarah Logan
Emma Dures Emma2.Dures@uwe.ac.uk
Professor in Rheumatology and Self-management
Contributors
Jo Robson Jo.Robson@uwe.ac.uk
Project Leader
Michael Shepherd
Researcher
Lorraine Harper
Researcher
Dr Mwidimi Ndosi Mwidimi.Ndosi@uwe.ac.uk
Researcher
Caroline Flurey Caroline2.Flurey@uwe.ac.uk
Researcher
Sarah Logan
Researcher
Emma Dures Emma2.Dures@uwe.ac.uk
Researcher
Abstract
© The Author(s) 2020. Objectives. CTD and systemic vasculitis impact on health-related quality of life. Treatment can be complex, involving multiple medical specialities. The aim of this study was to investigate psychological and self-management support for patients in secondary care. Methods. An online survey of health professionals in the UK, including 45 multiple-choice and freetext questions, was analysed descriptively. Free-text survey responses were analysed thematically to identify health professionals' perceptions of best practice and unmet needs. Results. The online survey included 120 health professionals (34% specialist nurses, 51% doctors and 12% allied health professionals), predominantly working in rheumatology (52.9%) and nephrology (21.5%) departments. Access to self-management programmes or clinics for people with CTD or vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to 'How well is your team providing self-management support to people with CTD or vasculitis?', 38% of respondents reported 'not very well' or 'not well at all'. Direct access to psychological support was available in 76.9% of nephrology and 32.8% of rheumatology departments. More than 80% of respondents would like additional training. Key themes from the qualitative data (free-text survey responses) included the importance of: Dedicated psychological support and self-management programmes for people with CTD and vasculitis, a whole-team approach (specialist teams empowering people to manage their own care), staff training (e.g. brief psychological interventions) and signposting to resources, including patient charities. Conclusion. People with CTD and vasculitis have complex needs, and improvements in selfmanagement and psychological support are required in UK rheumatology and nephrology departments.
Citation
Austin, K., Robson, J. C., Shepherd, M., Harper, L., Ndosi, M., Flurey, C., …Dures, E. (2020). Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals' perspectives. Rheumatology Advances in Practice, 4(2), Article rkaa016. https://doi.org/10.1093/rap/rkaa016
Journal Article Type | Article |
---|---|
Acceptance Date | Apr 28, 2020 |
Online Publication Date | May 27, 2020 |
Publication Date | 2020 |
Deposit Date | May 15, 2020 |
Publicly Available Date | Sep 25, 2020 |
Journal | Rheumatology Advances in Practice |
Print ISSN | 2514-1775 |
Electronic ISSN | 2514-1775 |
Publisher | Oxford University Press |
Peer Reviewed | Peer Reviewed |
Volume | 4 |
Issue | 2 |
Article Number | rkaa016 |
DOI | https://doi.org/10.1093/rap/rkaa016 |
Public URL | https://uwe-repository.worktribe.com/output/5975224 |
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Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals’ perspectives
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Licence
http://creativecommons.org/licenses/by-nc/4.0/
Publisher Licence URL
http://creativecommons.org/licenses/by-nc/4.0/
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