Being on the juvenile dermatomyositis rollercoaster: a qualitative study

Abstract

Background: 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.

Keywords: Juvenile dermatomyositis; Phenomenology; Psychosocial needs; Qualitative research; Uncertainty.

Fig. 1

A drawing representing participant’s experience of Juvenile Dermatomyositis. Children and young people were given the option of drawing how they view the effects of Juvenile Dermatomyositis on their body, either as part of the interview (a warm up activity) or if they did not want to talk, instead of the ‘standard interview’. They were offered a blank ‘bodymap’ and encouraged to complete however they wanted to, whether in text or drawing. The young person who completed this example, explained that they were drawing; the rash on the hands and face and knees, the biopsy site, the intravenous line in situ, constant tummy ache, vomit due to the medicines, tablet packets, scales (as they had lost so much weight) and a chair which they required as they couldn’t stand. They went on to write on their picture “I could not move”, “Always feel sad” and a thought bubble showing “I want this to STOP”

Fig. 2

The illustrated Rollercoaster Metaphor. This visual creation was developed after considering the journey which young people were describing. The downward track in the beginning as they began to get unwell from the Juvenile Dermatomyositis and the confusion from not knowing what is wrong. Then some relief and a journey up the rollercoaster as they finally get a diagnosis and a name for their symptoms, something which they can research and tell family and friends. This is followed back down the track as the realisation that it can be a serious condition, often at this stage accompanied by active, painful disease as they wait for treatment therapies to begin. Then back up the track as the treatments have started and they begin to feel better, maybe become able to move more and regain some strength. The rollercoaster continues like this as each young person described the seesaw of emotions, feelings and symptoms as they travelled on their JDM journey. The rollercoaster ride can go on for many years, with young people having ups, downs and plateaus from day to day and month to month, even year to year. This depiction can be used as it is shown, or modified to meets the needs of individual children, young people and their families in clinic to illustrate the rollercoaster and to help alleviate some of the unpredictability, confusion and increase their knowledge and understanding; preparing them for the future