Gómez-Ramírez Oralia, Gibbon Michele, Berard Roberta, Jurencak Roman, Green Jayne, Tucker Lori, Shiff Natalie, Guzman Jaime
Department of Anthropology, University of British Columbia, 6303 NW Marine Drive, Vancouver, British Columbia, V6T 1Z1, Canada.
Division of Rheumatology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8 L1, Canada.
Pediatr Rheumatol Online J. 2016 Mar 9;14(1):13. doi: 10.1186/s12969-016-0073-9.
Despite the wealth of clinical research carried out in children with juvenile idiopathic arthritis (JIA), little is known about the emotional experiences of their parents. This article describes the predominant emotional experiences reported by parents of children with JIA in two Canadian cities.
Research participants included 15 experienced parents and 8 novice parents (<6 months since children's JIA diagnosis). Their children were 2 to 16 years old with various JIA categories. A qualitative dataset including audio recordings and verbatim transcripts of three focus groups, and written reports of 59 reciprocal interviews (parents interviewing each other) were examined by a multidisciplinary research team following a four-step qualitative analytical process.
Parents of children with JIA experienced recurrent mixed negative and positive emotions that varied over time. Between disease onset and diagnosis, mounting anxiety, fear and confusion were the predominant emotions. Shortly after diagnosis there were shock, disbelief, and fear, with a sense of having being blindsided by the disease. At times of disease quiescence there was hope and gratitude, but also fatigue and frustration with ongoing treatment and fear of flares. During periods of increasing or ongoing symptoms there was admiration and sympathy for the courageous way children coped with JIA, as well as sorrow and frustration for ongoing pain and limitations. There were at times, frustration and indignation with peers and teachers unable to understand the child's fluctuations in physical activity and schoolwork. Throughout the disease, parents felt an underlying anxiety and powerlessness.
Parents of children with JIA described complex emotional journeys akin to the recurring ups and downs of rollercoaster rides, instead of ordered emotional phases ending in resolution. This has implications for healthcare providers who need to be aware of the complexity of these emotional journeys to support parents more effectively, thereby helping improve patient outcomes.
尽管针对幼年特发性关节炎（JIA）患儿开展了大量临床研究，但对于其父母的情感体验却知之甚少。本文描述了加拿大两个城市中JIA患儿父母报告的主要情感体验。
研究参与者包括15位有经验的父母和8位新手父母（孩子被诊断为JIA后不到6个月）。他们的孩子年龄在2至16岁之间，患有各种类型的JIA。一个多学科研究团队按照四步定性分析流程，对包括三个焦点小组的录音和逐字记录以及59次相互访谈（父母相互访谈）的书面报告在内的定性数据集进行了研究。
JIA患儿的父母经历了反复出现的、随时间变化的混合负面和正面情绪。在疾病发作和诊断之间，焦虑、恐惧和困惑不断增加是主要情绪。诊断后不久，会有震惊、怀疑和恐惧，感觉被疾病打了个措手不及。在疾病静止期，有希望和感激之情，但也有对持续治疗的疲惫和沮丧，以及对病情复发的恐惧。在症状加重或持续期间，对孩子应对JIA的勇敢方式感到钦佩和同情，同时对持续的疼痛和限制感到悲伤和沮丧。有时，对无法理解孩子身体活动和学业波动的同龄人和老师感到沮丧和愤慨。在整个疾病过程中，父母感到一种潜在的焦虑和无力感。
JIA患儿的父母描述了类似于过山车反复起伏的复杂情感历程，而不是以解决问题告终的有序情感阶段。这对医疗保健提供者具有启示意义，他们需要意识到这些情感历程的复杂性，以便更有效地支持父母，从而帮助改善患者的治疗效果。
