title: Why we need a process on breaking news of Juvenile Idiopathic Arthritis: a mixed methods study.
abstract: BACKGROUND
  Juvenile Idiopathic Arthritis is the most common chronic pediatric rheumatic disease. The announcement of Juvenile Idiopathic Arthritis poses for parents a number of challenges that make it hard to accept a diagnosis of the disease for their child; yet to our knowledge, no study to date has focused on the time period immediately surrounding the diagnosis. This study sets out to describe parents' experiences in engaging with their child's diagnosis of Juvenile Idiopathic Arthritis.
  
  
  METHODS
  This is a mixed methods study. Semi-structured interviews of families with a Juvenile Idiopathic Arthritis child were conducted. A grounded-theory thematic analysis was performed. Items that emerged in the interviews were compiled into a self-administered questionnaire.
  
  
  RESULTS
  Eleven families participated in the qualitative study. Sixty families responded to the questionnaire. The path of parents was characterized by doubt (before, during and after diagnosis) while the disease tended to take center stage. Doubt was generated through mismatches in perspectives between the parents' circle of acquaintances, physicians, and the parents' own subjective experiences of symptoms. This study also found that social support and parent associations occupied an ambiguous position between help and stigmatization.
  
  
  CONCLUSIONS
  Doubt fuels self-energizing spirals that take root as parents learn the news that their child has Juvenile Idiopathic Arthritis. These spirals of doubt may influence parents' experiences at every stage throughout the course of disease. Our data support the implementation of a specific process dedicated to breaking the news of Juvenile Idiopathic Arthritis to parents.
authors.affiliation: Pédiatrie, CHU Estaing, Clermont-Ferrand, France. achausset@chu-clermontferrand.fr.|Pédiatrie, INSERM-CIC1405, CHU Estaing, 1, place Lucie & Raymond Aubrac, 63003, Clermont-Ferrand, cedex 1, France. achausset@chu-clermontferrand.fr.
authors.forename: Aurélie
authors.initials: A
authors.lastname: Chausset
authors.affiliation: Pédiatrie, CHU Estaing, Clermont-Ferrand, France.
authors.forename: Anne-Laure
authors.initials: AL
authors.lastname: Gominon
authors.affiliation: Pédiatrie, CHU Estaing, Clermont-Ferrand, France.|Pédiatrie, INSERM-CIC1405, CHU Estaing, 1, place Lucie & Raymond Aubrac, 63003, Clermont-Ferrand, cedex 1, France.
authors.forename: Nathalie
authors.initials: N
authors.lastname: Montmaneix
authors.affiliation: Pédiatrie, CHU Estaing, Clermont-Ferrand, France.
authors.forename: Stéphane
authors.initials: S
authors.lastname: Echaubard
authors.affiliation: Service de Médecine des Adolescents, CHU Bicêtre, Le Kremlin-Bicêtre, France.
authors.forename: Séverine
authors.initials: S
authors.lastname: Guillaume-Czitrom
authors.affiliation: Département de médecine générale, Faculté de Médecine, Clermont-Ferrand, France.
authors.forename: Benoit
authors.initials: B
authors.lastname: Cambon
authors.affiliation: CRIAVS, Pôle Santé Publique, CHU Gabriel Montpied, Clermont-Ferrand, France.
authors.forename: Cécile
authors.initials: C
authors.lastname: Miele
authors.affiliation: Pédiatrie, CHU Estaing, Clermont-Ferrand, France.|Pédiatrie, INSERM-CIC1405, CHU Estaing, 1, place Lucie & Raymond Aubrac, 63003, Clermont-Ferrand, cedex 1, France.
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Rochette
authors.affiliation: Pédiatrie, CHU Estaing, Clermont-Ferrand, France.|Pédiatrie, INSERM-CIC1405, CHU Estaing, 1, place Lucie & Raymond Aubrac, 63003, Clermont-Ferrand, cedex 1, France.
authors.forename: Etienne
authors.initials: E
authors.lastname: Merlin
mesh_terms: D000293:Adolescent; D001007:Anxiety / Q000209:etiology; D001171:Arthritis, Juvenile / Q000175:diagnosis / Q000523:psychology*; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003376:Counseling; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D010465:Perception; D010549:Personal Satisfaction; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires; D014342:Truth Disclosure
keywords: Diagnostic counseling; Doubt; Juvenile idiopathic arthritis; Parent’s experience; Qualitative research