University of Surrey

Test tubes in the lab Research in the ATI Dance Research

Being on the Juvenile Dermatomyositis Rollercoaster: a qualitative study

Livermore, Polly, Gray, Suzanne, Mulligan, Kathleen, Stinson, Jennifer N., Wedderburn, Lucy R. and Gibson, Faith (2019) Being on the Juvenile Dermatomyositis Rollercoaster: a qualitative study Pediatric Rheumatology.

[img] Text
JDM PedsRheumOnline paper.12.5.19.docx - Accepted version Manuscript
Available under License Creative Commons Attribution.

Download (62kB)
[img] Text (Figures)
JDM PedsRheumOnline figures.12.05.19.docx - Supplemental Material
Available under License Creative Commons Attribution.

Download (282kB)
[img] Text (Tables)
JDM PedsRheumOnline tables.12.5.19.docx - Accepted version Manuscript
Available under License Creative Commons Attribution.

Download (15kB)

Abstract

Objectives: Juvenile Dermatomyositis is a rare, potentially life-threatening condition with no known cure. There is no published literature capturing how children and young people feel about their condition, from their perspective. This study was therefore unique in that it asked children and young people what is it like to live with Juvenile Dermatomyositis.

Methods: Data were obtained from fifteen young people with Juvenile Dermatomyositis, between eight and nineteen years of age from one Paediatric Rheumatology department using audio-recorded interpretive phenomenology interviews. Data were analyzed phenomenologically, using a process that derives narratives from transcripts resulting in a collective composite of participants shared experiences, called a ‘phenomenon’.

Results: The overarching metaphor of a rollercoaster captures the phenomenon of living with Juvenile Dermatomyositis as a young person, with the ups and downs at different time points clearly described by those interviewed. The five themes plotted on the rollercoaster, began with confusion; followed by feeling different, being sick, steroidal and scared from the medications; uncertainty; and then ended with acceptance of the disease over time.

Conclusion: Young people were able to talk about their experiences about having Juvenile Dermatomyositis. Our findings will aid clinicians in their practice by gaining a deeper understanding of what daily life is like and highlighting ways to enhance psychosocial functioning. Hopefully, this study and any further resulting studies, will raise understanding of Juvenile Dermatomyositis worldwide and will encourage health care professionals to better assess psychosocial needs in the future.

Item Type: Article
Divisions : Faculty of Health and Medical Sciences > School of Health Sciences
Authors :
NameEmailORCID
Livermore, Polly
Gray, Suzanne
Mulligan, Kathleen
Stinson, Jennifer N.
Wedderburn, Lucy R.
Gibson, Faithf.gibson@surrey.ac.uk
Date : 2019
Funders : National Institute for Health Research (NIHR), Arthritis Research UK
Grant Title : Fellowship for Health Education England (HEE) / Integrated Clinical Academic (ICA) for non-medical heath care professionals
Copyright Disclaimer : © The Author(s). 2019. Open Access. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Related URLs :
Depositing User : Clive Harris
Date Deposited : 18 Jun 2019 08:09
Last Modified : 18 Jun 2019 08:09
URI: http://epubs.surrey.ac.uk/id/eprint/852038

Actions (login required)

View Item View Item

Downloads

Downloads per month over past year


Information about this web site

© The University of Surrey, Guildford, Surrey, GU2 7XH, United Kingdom.
+44 (0)1483 300800