Parents of children with juvenile idiopathic arthritis (JIA) surveyed for a study in Canada were generally unaware of current research findings, though they said information about the latest studies and long-term side effects of medication were high priorities.
Parents found it helpful to receive this information, particularity at diagnosis or during disease activity, from credible sources and delivered in a variety of formats, the study showed.
The study, “Parental Perspectives about Research and Knowledge Translation in Juvenile Idiopathic Arthritis,” was published in the journal ACR Open Rheumatology.
Due to the unpredictable nature of JIA, many parents of newly diagnosed children expressed difficulty accepting the diagnosis and concerns about their children’s futures.
Providing parents with information from high-quality research may help alleviate some of this distress and improve their ability to make informed decisions. However, as diseases like JIA are rare, information on research progress can be hard to find.
A group of investigators from four pediatric rheumatology centers across Canada interviewed parents of children with JIA to identify barriers to and facilitators of JIA research information.
A total of 28 parents (mean age 44.7) of 23 children (mean age 11.5) were included in the study. The children had varying levels of disease severity, and were either newly diagnosed or had been living with JIA for a few years. Focus group interviews were conducted with 18 parents, and the remaining 10 parents were interviewed by telephone.
The team found there was a lack of awareness of the nature of JIA research. While some parents were aware JIA research was being conducted in Canada, none knew about significant findings.
“There’s lots of work being done in research for JIA, which is good, and there’s recognition that maybe research has been done, but there’s not been the communication of it,” one parent said. “It hasn’t been as effective as you would hope.”
Parents said knowing research results was a high priority, as they wanted to know what to expect for their children in the short and long term.
“[O]ne of the rheumatologists showed a graph about the different subtypes of arthritis and the timeline from diagnosis to remission,” one parent said. “I certainly was looking at it going, okay, I’m six months in to what on average is two years before things will settle. That’s useful information.”
“Maybe laying out what potentially could be ahead” would be helpful, said another. “Everybody’s different, but I think I would have liked to know a bit more of the possibilities that are out there and maybe the different ways it can go.”
Parents were also concerned about the long-term side effects of medications. Many wanted to know the experiences of other children receiving the same therapy.
“In terms of medication, maybe numbers on the percentage of when it doesn’t work, how many people take it, to give an idea of success,” a parent suggested.
Sources of information were also important. Parents expressed fear and distrust of health information from the internet. When materials were endorsed by a trusted source, such as their healthcare team, a hospital, or an organization like the Arthritis Society, parents were more likely to accept the information.
“I like to stick to just the Arthritis Society, because we know it’s the actual Arthritis Society that has put out the information, so we trust what we read from that website for sure,” said one parent.
Some parents wanted information emailed, while others wanted to be able to watch a video or go to a website. Parents also wanted this information presented in an easy-to-understand format.
Disease status affected information needs, the study found. Parents needed information at diagnosis and during times of disease activity, saying it helped them cope and provide the best care for their children. Many reported difficulties in making decisions about new medications.
“When we first got the diagnosis, I just had to know everything. I wanted to know what category, what risks, prognosis, and I was trying to get all the information I could to understand it,” a parent said.
“This study has led to an understanding of Canadian parents’ perceptions about research and existing gaps in the translation of research knowledge,” the investigators wrote.
“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,” they said.