ArticlePediatric rheumatology online journal2016
Why we need a process on breaking news of Juvenile Idiopathic Arthritis: a mixed methods study.
Article in Pediatric rheumatology online journal, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- Development of a scoring system to assist clinicians in the early referral of patients with suspected juvenile idiopathic arthritis: the EasyJIA score.Arthritis research & therapy · 2026Article
- Caregiver burden in families of children with juvenile idiopathic arthritis in India.Clinical rheumatology · 2024Article
- Individual and environmental determinants associated with longer times to access pediatric rheumatology centers for patients with juvenile idiopathic arthritis, a JIR cohort study.Pediatric rheumatology online journal · 2023Article
- Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers.Pediatric rheumatology online journal · 2020Article
- Chinese family care patterns of childhood rheumatic diseases: A cluster analysis.International journal of nursing sciences · 2020Article
- Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis.Journal of pediatric nursingArticle
Corrections and comments
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Authors and funding
9 authors.
Funding
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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.
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