Being on the juvenile dermatomyositis rollercoaster: a qualitative study

Area of Science:

• Pediatric Rheumatology
• Rare Childhood Diseases
• Qualitative Research

Background:

• Juvenile Dermatomyositis (JDM) is a rare, incurable, and potentially life-threatening autoimmune condition affecting children.
• Limited research exists on the lived experiences of young people with JDM from their own perspectives.
• This study addresses the gap by exploring the subjective reality of living with JDM in youth.

Purpose of the Study:

• To understand the lived experiences of children and young people diagnosed with Juvenile Dermatomyositis.
• To provide a platform for young patients to articulate their perspectives on managing JDM.
• To inform clinical practice and enhance psychosocial support for pediatric JDM patients.

Main Methods:

• Utilized interpretive phenomenology through audio-recorded interviews with fifteen participants aged 8-19 years.
• Employed phenomenological analysis to derive narratives and construct a collective composite of shared experiences.
• Focused on a single Paediatric Rheumatology department for data collection.

Main Results:

• The phenomenon of living with JDM was metaphorically described as a 'rollercoaster' by participants.
• Key themes identified included initial confusion, feeling different, illness, medication side effects (steroids), uncertainty, and eventual acceptance.
• The study highlights the dynamic emotional and psychological journey of young people with JDM over time.

Conclusions:

• Young individuals with JDM can effectively communicate their experiences and challenges.
• Findings offer clinicians deeper insights into the daily lives of JDM patients, aiding in psychosocial support enhancement.
• This research aims to increase global understanding of JDM and promote better assessment of psychosocial needs by healthcare professionals.