title: The lived experience of juvenile idiopathic arthritis in young people receiving etanercept.
abstract: 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.
authors.affiliation: Rheumatology Department, Great Ormond Street Children's Hospital, Great Ormond Street, London, WC1N 3JH, UK. polly.livermore@gosh.nhs.uk.
authors.forename: P
authors.initials: P
authors.lastname: Livermore
authors.affiliation: Arthritis Research UK Centre for Adolescent Rheumatology at UCL UCLH and GOSH, and Infection, Inflammation and Rheumatology Section, Institute of Child Health, UCL, London, UK.
authors.forename: D
authors.initials: D
authors.lastname: Eleftheriou
authors.affiliation: Arthritis Research UK Centre for Adolescent Rheumatology at UCL UCLH and GOSH, and Infection, Inflammation and Rheumatology Section, Institute of Child Health, UCL, London, UK.
authors.forename: L R
authors.initials: LR
authors.lastname: Wedderburn
mesh_terms: D000293:Adolescent; D018501:Antirheumatic Agents / Q000627:therapeutic use; D001171:Arthritis, Juvenile / Q000188:drug therapy*; D002648:Child; D002675:Child, Preschool; D000068800:Etanercept / Q000627:therapeutic use*; D005260:Female; D006801:Humans; D008297:Male; D011785:Quality Assurance, Health Care; D012042:Registries; D011795:Surveys and Questionnaires; D016896:Treatment Outcome
chemical_list: D018501:Antirheumatic Agents; D000068800:Etanercept
keywords: Etanercept; Expectations; Juvenile idiopathic arthritis; Paediatric; Phenomenology; Qualitative