Young people's lived experience of juvenile idiopathic arthritis
Research type
Research Study
Full title
Understanding the lived experiences of young people with juvenile idiopathic arthritis through exploring biographical narratives.
IRAS ID
311430
Contact name
Charlotte Lauren Dimond
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
2 years, 11 months, 24 days
Research summary
Juvenile idiopathic arthritis (JIA) is a childhood onset chronic disease that is characterised by episodes of arthritic symptoms in children and young people. In the U.K approximately 1 in 10,000 children are diagnosed with JIA. No definite causes of JIA are yet defined, although environmental factors may be involved. There are difficulties in diagnosing young children. Though there have been several sociological studies on arthritis (primarily on adult’s experience) and some research on young people’s experience, there has been little work exploring the personal biographical narrative experiences of young people diagnosed with JIA, as they transition into adulthood.
This qualitative research will understand how children and young people negotiate their diagnosis of JIA; focus on how children and young people experience JIA within broader social contexts (e.g., education, peer groups, identity); and explore the perceptions and processes of diagnosis and subsequent treatments. The study will also explore life trajectories as young people’s transition into adulthood.
This research will us a qualitative methodology to purposively sample and interview 30 children and young people, with a diagnosis of JIA, ages between 14 and 30 years old. Narrative thematic analysis will be used to identify themes and explore the experiences of JIA of young people.
Participants will be recruited through Leeds Teaching Hospitals Trust via rheumatology clinics / support groups. Children and young people aged between 14 and 30 years old with a diagnosis of JIA will be eligible to participate in the study. Participants will be interviewed about their experience of living with JIA for no more than 1 hour using Zoom video conferencing software.
This research is funded by the University of York and is to obtain a doctorate degree.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
22/SW/0067
Date of REC Opinion
26 May 2022
REC opinion
Favourable Opinion