City Research Online

Mapping the current psychology provision for children and young people with Juvenile Dermatomyositis

Livermore, P., Gibson, F., Mulligan, K. ORCID: 0000-0002-6003-3029 , Wedderburn, L. R., McCann, L. J. & Gray, S. (2021). Mapping the current psychology provision for children and young people with Juvenile Dermatomyositis. Rheumatology Advances in Practice, 5(3), article number rkab062. doi: 10.1093/rap/rkab062


Juvenile Dermatomyositis is a rare, chronic autoimmune condition of childhood with known psychosocial implications. This study sought to establish current psychology support for children and young people across the United Kingdom with rheumatic conditions, with a specific focus on those with Juvenile Dermatomyositis.

Electronic surveys were distributed to the 15 centres that belong to the Juvenile Dermatomyositis Research Group in the United Kingdom, collecting responses from health care professionals in the fields of medicine, nursing and psychology.

One hundred percent of professionals from medicine and nursing replied from all 15 centres. Of these, 7 (47%) did not have a named psychologist as part of their rheumatology team, despite the majority, 13 (87%) having more than 200 paediatric rheumatology patients. Of the remaining centres, hospital psychology provision varied considerably. When rating their service, only 3 (8%) out of 40 professionals scored their service as a 5, (where 1 is poor, 5 is excellent): there were wide discrepancies in these scores. Many challenges were discussed, including limited psychology provision, lack of time and difficulties of offering support across large geographical areas.

Many of the challenges discussed are applicable to other centres worldwide. Suggestions have been proposed which may help to improve the situation for children and young people with rheumatic conditions, including Juvenile Dermatomyositis. Based on these findings, we suggest that rheumatology teams maximise use of these data, to advocate and work towards more comprehensive psychology provision and support in their individual centres.

Publication Type: Article
Additional Information: © The Author(s) 2021. Published by Oxford University Press on behalf of the British Society for Rheumatology. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
Publisher Keywords: Juvenile Dermatology, Psychology provision, Paediatric Rheumatology, Nurse support, Psychosocial
Subjects: B Philosophy. Psychology. Religion > BF Psychology
R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
R Medicine > RT Nursing
Departments: School of Health & Psychological Sciences > Healthcare Services Research & Management
SWORD Depositor:
[thumbnail of rkab062.pdf]
Text - Published Version
Available under License Creative Commons: Attribution International Public License 4.0.

Download (242kB) | Preview
[thumbnail of Mapping the current psychology track changes.pdf] Text - Accepted Version
This document is not freely accessible due to copyright restrictions.


Add to AnyAdd to TwitterAdd to FacebookAdd to LinkedinAdd to PinterestAdd to Email


Downloads per month over past year

View more statistics

Actions (login required)

Admin Login Admin Login