Why we need a process on breaking news of Juvenile Idiopathic Arthritis: a mixed methods study.

Aurélie Chausset,Anne-Laure Gominon,Stéphane Echaubard,Etienne Merlin,Séverine Guillaume-Czitrom,Nathalie Montmaneix,Cécile Miele,Benoit Cambon,Emmanuelle Rochette

doi:10.1186/s12969-016-0092-6

Abstract

BackgroundJuvenile 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.MethodsThis 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.ResultsEleven 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.ConclusionsDoubt 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.

Highlights

Juvenile Idiopathic Arthritis is the most common chronic pediatric rheumatic disease
A total of 11 families were included in the qualitative study, counting 11 mothers and 8 fathers (i.e. 8 couples and 3 single mothers)
Three main themes emerged from analysis of the interviews: doubt, the prominent place of the disease in parents’ lives, and the need for medical counseling

Summary

Introduction

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. Juvenile Idiopathic Arthritis (JIA) is the most common chronic pediatric rheumatic disease [1]. It is defined by the onset, before the age of 16 years, of inflammatory joint symptoms persistent for at least 6 weeks and of unknown cause [2]. A diagnosis of JIA poses a number of challenges for parents that make it hard to accept a diagnosis of JIA for their child.

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