The lived experience of juvenile idiopathic arthritis in young people receiving etanercept

BACKGROUND: This study explores young people’s daily experiences of living with Juvenile Idiopathic Arthritis (JIA) and their thoughts, beliefs and feelings related to the biological drug Etanercept, prescribed as part of their treatment. METHODS: An Interpretive Phenomenological approach was used to allow in-depth examinations of the young people’s personal accounts of their lived experiences. Data were obtained from 6 young people between the ages of 10–13 years, from one tertiary institution’s Paediatric Rheumatology department using audio-taped open-ended interviews. RESULTS: The transcripts yielded seven thousand words of data and two hundred significant statements, which were reduced to five themes; 1) Who understands me, 2) Medicines and injections, 3) Challenges of schooling and friendships, 4) Being different, and 5) Exclusion from sports. There were marked similarities between the young people’s statements; however, there were also some striking differences. The theme ‘Who understands me’ yielded the biggest section of data, but also produced the biggest disparity between the young people. Two patients were very clear that they thought everyone ‘understands’, whilst two other patients held the belief that ‘no one understood’. This paper explores these statements in further detail. CONCLUSIONS: The findings from this study can give healthcare professionals novel insight into the likely reactions to-treatment for JIA and, through this, enable them to offer improved support, education and early intervention before these issues become a concern. This study also provides insight into the emotional resilience of young people with JIA. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12969-016-0083-7) contains supplementary material, which is available to authorized users.