R11 Understanding juvenile dermatomyositis from a young person’s perspective

Abstract

Background: Juvenile dermatomyositis (JDM) is a rare, potentially life threatening condition. Beginning with mild fatigue and weakness, the condition can occur at any age, and currently there is no known cure. Some children and young people can experience fluctuations between remission and relapse throughout their childhood, into adolescence and beyond. There is very little evidence about the psychological impact this condition has on children and young people, and none that has asked them directly. However, through experience from clinical practice and conversations with those affected, we know the effects can be profound. The aim of this study was to identify the lived experience of children and young people between the ages of 8 and 19 years of age diagnosed with JDM. This study constitutes the first part of a larger mixed-methods study. Method(s): Ethical approval was gained to interview children and young people who were enrolled in a wider cohort study. Young people were interviewed either using creative arts based methods, such as drawing on a body map and parallel discussion, or with a standard verbal interview. Young people were asked: "What it is like to have JDM?" Further questions were used to probe or add clarity. Interviews took place when attending the inpatient ward or clinic of a tertiary specialist rheumatology centre or during a specially arranged home visit. Result(s): Fifteen young people offered to share their stories. All interviews were audio recorded with permission, transcribed verbatim and analysed using interpretive phenomenology. The overarching metaphor of a 'rollercoaster' was developed from the interview transcripts, to depict the ups and downs of having JDM. From initial difficulties with diagnosis by local health professionals of a rare disease to feeling some comfort at getting a diagnosis, to the low of struggling to walk, to the relief when medications start to work and initial improvement is felt. The 'rollercoaster' metaphor is visual, easy to explain and understand, and will hopefully allow young people to feel some support from seeing the journey ahead. Within this overarching construct, there are five themes which emerged from the data. These are: being-confused in the beginning; being-different; sick-steroidal-and-scared of the medications; being-uncertain; and gaining-acceptance, as the JDM journey continues often for many years. Conclusion(s): This study is the first to ask children and young people what it is like to have JDM, to recount the 'ups and downs' of their lives and describe the ways that JDM affects them. The results from this study are already leading to a wider study asking young people all over the United Kingdom to share their stories through surveys examining aspects which have been highlighted so far, this will then lead into dissemination workshops to share the results further.