Chausset Aurélie, Gominon Anne-Laure, Montmaneix Nathalie, Echaubard Stéphane, Guillaume-Czitrom Séverine, Cambon Benoit, Miele Cécile, Rochette Emmanuelle, Merlin Etienne
Pédiatrie, CHU Estaing, Clermont-Ferrand, France.
Pédiatrie, INSERM-CIC1405, CHU Estaing, 1, place Lucie & Raymond Aubrac, 63003, Clermont-Ferrand, cedex 1, France.
Pediatr Rheumatol Online J. 2016 May 21;14(1):31. doi: 10.1186/s12969-016-0092-6.
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.
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.
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.
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.
幼年特发性关节炎是最常见的儿童慢性风湿性疾病。幼年特发性关节炎的确诊给家长带来了诸多挑战，使他们难以接受孩子患有此病的诊断结果；然而据我们所知，迄今为止尚无研究聚焦于确诊前后的这段时间。本研究旨在描述家长面对孩子幼年特发性关节炎诊断结果时的经历。
这是一项混合方法研究。对有幼年特发性关节炎患儿的家庭进行了半结构化访谈。进行了扎根理论主题分析。将访谈中出现的项目编制成一份自填式问卷。
11个家庭参与了定性研究。60个家庭回复了问卷。家长的历程以怀疑为特征（诊断前、诊断期间和诊断后），而疾病往往占据核心位置。怀疑源于家长的熟人圈子、医生与家长自身症状主观体验之间的观点不匹配。本研究还发现，社会支持和家长协会在帮助与污名化之间处于模糊地位。
怀疑引发自我强化的螺旋式上升，在家长得知孩子患有幼年特发性关节炎的消息时扎根。这些怀疑的螺旋式上升可能会在疾病过程的每个阶段影响家长的经历。我们的数据支持实施一个专门向家长传达幼年特发性关节炎诊断消息的特定流程。
