Parental Perspectives about Research and Knowledge Translation in Juvenile Idiopathic Arthritis

Abstract

Objective To identify barriers and facilitators to the uptake of information from research by parents of children with juvenile idiopathic arthritis (JIA). Methods Parents of children with JIA participated in focus group and telephone interviews at four Canadian pediatric rheumatology centers. The semistructured interviews focused on perceptions about JIA research, how new information about JIA was obtained and used, and what information was of most interest. Transcripts were analyzed using a general inductive approach. Results Twenty‐eight parents participated in the study. Parents were very interested in research that addresses the outcomes of JIA and side effects of medications. Parents communicated an expectation that information from research be communicated to them by their child's pediatric rheumatologist as part of clinical care. Parents felt that it would be helpful to have information available to them in a variety of formats including written, video, and online. The timing of information delivery is an important factor, with parents being most interested and engaged in learning about new information about JIA at diagnosis and disease flares. We found that parents were overall unaware of new findings from JIA research and therefore may not be optimally utilizing this potentially helpful information in the care of their children. Conclusion This study has led to an understanding of Canadian parents’ perceptions about research and existing gaps in the translation of research knowledge. This information will facilitate the development, implementation, and evaluation of future knowledge translation interventions aimed at improving the uptake of research information in the care of children with JIA.

Is time a healer? How quality of life changes over time reported by parents of children and young people with juvenile idiopathic arthritis

“…The parental perspective is only one perspective and may be different, particularly during adolescence when young people begin to live more independently. That being said, the parental perspective remains an important consideration both clinically and from a research perspective [ 30 ] and, importantly for the current study, it provided crucial consistency in terms of the data informant across the three time periods. Changing the source to the children and young people once they were old enough to self-report could potentially confound results.…”

“…Another possible explanation is that children and young people and their families may view JIA initially as a short-term illness, but this view may change as they learn more about it. Knowledge of the potential short- and long-term outcomes for their child is very important to parents [ 30 ]. This may lead to a shift in perception towards having a child with a long-term condition, with the implications of this realization increasing over the first few years following diagnosis.…”

The Effects of a Web-Based Tool for Parents of Children With Juvenile Idiopathic Arthritis: Randomized Controlled Trial

“…A potential preventive approach is to provide web-based interventions. It is important that parents are able to access information from a trusted source [9]; however, health information on the internet is unregulated, often not validated through a systematic process [10], and the quality is variable [11,12]. When developing this research, none of the websites providing information for children and young people with JIA and their parents had been evaluated in a randomized controlled trial (RCT) and none provided skills training in techniques to help parents to manage their child's arthritis [12].…”