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Abstract

Background: Juvenile idiopathic arthritis (JIA) is a group of autoinflammatory diseases, which 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 the parents of children with chronic illness than those of 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.

Objective: To evaluate the benefits of a web-based tool (“WebParC”) for parents of children with recently diagnosed JIA.

Methods: A multi-centred randomised controlled trial was conducted in paediatric rheumatology centres in England. Parents of children aged ≤12 years, who had been diagnosed within JIA within the previous six months, were recruited when they attended clinic with their child. They were randomised to the Intervention (WebParC access plus standard care) or the Control (standard care alone), and followed up 4-months and 12-months post-randomisation. Where both parents participated, they were randomised ‘by household’ to the same trial arm. The WebParC intervention consists of information about JIA and its treatment plus a toolkit, based on cognitive-behavioural therapy, to help parents develop skills to manage JIA-related issues.
The primary outcome was the self-report Pediatric Inventory for Parents (PIP) measure of illness-related parenting stress. Secondary outcomes were: parental mood, self-efficacy, coping, effectiveness of participation in their child’s healthcare, satisfaction with healthcare and child health-related quality of life (HRQoL).

Results: A total of 203 ‘households’, comprising 220 parents, were randomised to the Intervention (n=100) or Control (n=103) arm. Follow-up assessments were completed by 133 households (65.5%) at 4-months (60 households Intervention, 73 Control) and 124 (61.1%) (58 households Intervention, 66 Controls) at 12-months.
A main effect of trial-arm was found on the PIP; Intervention participants reported less frequency (subscales Communication F=5.37, P=.02; Role Function F=5.40, P=.02) and difficulty (subscales Communication F=7.43, P=.006; Medical care F=4.04, P=.04; Role Function F=4.37, P=.04) of illness-related stressful events than Control participants.

Conclusions: The WebParC website for parents of children with JIA reduced illness-related parenting stress. This online intervention offers a feasible preventative approach for parents of children with JIA and potentially could be adapted and evaluated for parents of children with other chronic illnesses.

Publication Type:	Article
Additional Information:	This article has been published in Journal of Medical Internet Research (JMIR) by JMIR Publications. The work is licensed under the Creative Commons Attribution License CC-BY 4.0.
Publisher Keywords:	parenting stress; juvenile idiopathic arthritis; web-based intervention; randomized controlled trial; parenting; pediatrics; arthritis; RCT; rheumatology; children; youth; web-based tool; mobile phone
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > RA Public aspects of medicine R Medicine > RC Internal medicine R Medicine > RJ Pediatrics
Departments:	School of Health & Psychological Sciences > Healthcare Services Research & Management
SWORD Depositor:	Symplectic Administrator

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