Centre for Health Services Research, School of Health Sciences, City, University of London, London, United Kingdom.
East London NHS Foundation Trust, London, United Kingdom.
J Med Internet Res. 2022 May 12;24(5):e29787. doi: 10.2196/29787.
Juvenile idiopathic arthritis (JIA) is a group of autoinflammatory diseases that cause pain and disability if not controlled by treatment. Parenting a child with JIA is stressful for parents, who express concerns about their child's treatment and may experience anxiety and powerlessness concerning their child's illness. Parenting stress is greater in parents of children with chronic illness than in those with healthy children and is related to poorer psychological adjustment in both parents and children. It is therefore important to develop interventions to support parents. This paper reports the evaluation of a web-based tool that provides information and practical skills to help increase parents' confidence in managing their child's illness and reduce parenting stress.
The aim of this study is to evaluate the benefits of a web-based tool (WebParC) for parents of children with recently diagnosed JIA.
A multicentered randomized controlled trial was conducted at pediatric rheumatology centers in England. We recruited parents of children aged ≤12 years who had been diagnosed with JIA within the previous 6 months. They were randomized to the intervention (WebParC access plus standard care) or the control (standard care alone) and followed up 4 months and 12 months after randomization. Where both parents participated, they were randomized by household to the same trial arm. The WebParC intervention consists of information about JIA and its treatment plus a toolkit, based on cognitive behavioral therapy, to help parents develop skills to manage JIA-related issues. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress. The secondary outcomes were parental mood, self-efficacy, coping, effectiveness of participation in their child's health care, satisfaction with health care, and child's health-related quality of life.
A total of 203 households comprising 220 parents were randomized to the intervention (100/203, 49.3%) or control (103/203, 50.7%) arm. Follow-up assessments were completed by 65.5% (133/203) of the households at 4 months (intervention 60/100, 60%, and control 73/103, 70.9%) and 61.1% (124/203) of the households at 12 months (intervention 58/100, 58%, and control 66/103, 64.1%). A main effect of the trial arm was found on the Pediatric Inventory for Parents: the intervention participants reported less frequency (subscales communication F=5.37; P=.02, and role function F=5.40; P=.02) and difficulty (subscales communication F=7.43; P=.006, medical care F=4.04; P=.04, and role function F=4.37, P=.04) regarding illness-related stressful events than the control participants.
The WebParC website for parents of children with JIA reduced illness-related parenting stress. This web-based intervention offers a feasible preventive approach for parents of children with JIA and potentially could be adapted and evaluated for parents of children with other chronic illnesses.
International Standard Randomized Controlled Trial Number (ISRCTN) 13159730; http://www.isrctn.com/ISRCTN13159730.
幼年特发性关节炎（JIA）是一组自身炎症性疾病，如果不通过治疗加以控制，可能会导致疼痛和残疾。养育患有 JIA 的孩子会给父母带来压力，他们对孩子的治疗表示担忧，并可能对孩子的疾病感到焦虑和无能为力。与健康儿童的父母相比，患有慢性疾病的儿童的父母压力更大，并且与父母和儿童的心理调整较差有关。因此，开发支持父母的干预措施非常重要。本文报告了一种基于网络的工具的评估结果，该工具提供信息和实用技能，以帮助父母增强管理孩子疾病的信心，并减轻育儿压力。
本研究旨在评估一种针对近期诊断为 JIA 的儿童的父母的基于网络的工具（WebParC）的益处。
在英国的儿科风湿病中心进行了一项多中心随机对照试验。我们招募了年龄在 12 岁以下、6 个月内被诊断为 JIA 的儿童的父母。他们被随机分配到干预组（WebParC 访问加标准护理）或对照组（仅标准护理），并在随机分组后 4 个月和 12 个月进行随访。如果父母双方都参与，则按家庭随机分配到同一试验臂。WebParC 干预措施包括 JIA 及其治疗的信息以及基于认知行为疗法的工具包，以帮助父母发展管理与 JIA 相关问题的技能。主要结局是父母用儿科患者父母症状问卷评估与疾病相关的育儿压力。次要结局包括父母的情绪、自我效能感、应对方式、参与孩子医疗保健的有效性、对医疗保健的满意度以及孩子的健康相关生活质量。
共有 203 个家庭（220 名父母）被随机分配到干预组（100/203，49.3%）或对照组（103/203，50.7%）。4 个月时（干预组 60/100，60%，对照组 73/103，70.9%）和 12 个月时（干预组 58/100，58%，对照组 66/103，64.1%）完成随访评估的家庭比例分别为 65.5%（133/203）和 61.1%（124/203）。试验臂的主要效应存在于儿科患者父母症状问卷上：干预组父母报告的与疾病相关的压力事件的频率（子量表沟通 F=5.37；P=.02，角色功能 F=5.40；P=.02）和困难程度（子量表沟通 F=7.43；P=.006，医疗保健 F=4.04；P=.04，角色功能 F=4.37，P=.04）均低于对照组父母。
针对 JIA 儿童的父母的 WebParC 网站减少了与疾病相关的育儿压力。这种基于网络的干预措施为 JIA 儿童的父母提供了一种可行的预防方法，并且可能适合其他患有慢性疾病的儿童的父母进行改编和评估。
国际标准随机对照试验编号（ISRCTN）13159730；http://www.isrctn.com/ISRCTN13159730。
