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Parental Perspectives about Research and Knowledge Translation in Juvenile Idiopathic Arthritis

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.


INTRODUCTION
The existence of a "Knowledge-To-Action" (KTA) gap, which refers to the failure or slow adoption of research findings into practice and policy, has been well established across health research disciplines (1,2). Although health research encompasses a broad scope of purpose, a key overarching goal is to improve health outcomes. This requires the meaningful uptake and use of new research knowledge by relevant stakeholders, a process referred to as knowledge translation (KT). To bridge the KTA gap, a wide variety of KT strategies have been developed and implemented across multiple disciplines. KT strategies are often directed at health care professionals and can consist of single or multiple intervention approaches. This can include educational components, personal audits and feedback, reminders, and computerized decision supports (2)(3)(4). In contrast, patient-mediated KT strategies aim to engage patients in their own care, increase patient knowledge and satisfaction with the health care experience, promote adherence and other behaviors, and improve health outcomes (5)(6)(7)(8).
A well-recognized KT framework is the Knowledge-To-Action Process (KTAP), which conceptualizes the relationship between | 139 knowledge creation and action ( Figure 1) (1). The knowledge creation funnel is at the center, surrounded by the action cycle, which highlights key phases pertaining to the application of knowledge. This includes adapting the knowledge to the local context and determining potential barriers and facilitators to knowledge uptake.
We used the KTAP framework as the foundation for this study and began by focusing on information derived from the Research on Arthritis in Canadian Children, emphasizing Outcomes (ReACCh-Out) Study (9). Grimshaw et al suggest that the optimal basic unit of KT is an up-to-date systematic review or other synthesis of global evidence (2). We argue that information from a single high-quality research study could be very meaningful for patients and parents. This may be particularly applicable to rare diseases in pediatric rheumatology in which large-scale syntheses of research information are less likely to exist (10). Looking to the literature on preferences for the return of research results, we found a desire for broader sharing of this information. In a qualitative study of adult research participants' perceptions and preferences regarding research dissemination, participants felt they had a right to receive research findings, and these rights extended to the broader disease community, regardless of whether a patient had participated in the research study (11). Finally, and perhaps the most compelling reason to translate the results of the ReACCh-Out study, is the potential to improve care.
The primary aim of the ReACCh-Out study was to describe clinical outcomes of juvenile idiopathic arthritis (JIA) in a prospective inception cohort of children in order to better counsel families of newly diagnosed patients (9,12). JIA, the most common chronic rheumatic disease of childhood, is characterized by joint swelling and stiffness, chronic pain, decreased quality of life, the need for long-term medications, and frequent flares (13,14). There is a high burden of emotional distress associated with a diagnosis of JIA for both patients and parents. Parents of newly diagnosed children express difficulty coming to terms with the diagnosis, have described the unpredictable nature of JIA as an "emotional rollercoaster," and are very concerned for their child's future (15). We propose that one of the major contributions of this type of cohort study, which focuses on outcomes in routine clinical practice, is to inform high-quality evidence-based disease counseling in the care of children with JIA. We hypothesize that information from observational studies, such as the ReACCh-Out study, could meet some of the information needs of parents, help to allay some of the distress that is associated with the fear of the unknown, and improve the decision-making process.
In this study, we looked at the action cycle of the KTAP, specifically the step of assessing barriers and facilitators to knowledge uptake by parents. A thorough understanding of these factors will help to inform the development of future KT strategies. We recently reported our findings pertaining to the uptake of research knowledge by another group of relevant knowledge users, the health care providers caring for children with JIA (16). The objective of this study was to identify barriers and facilitators to the uptake of information from research by parents of children with JIA.

MATERIALS AND METHODS
Parents of children with JIA from four Canadian pediatric rheumatology centers (IWK Health Centre, Halifax; McMaster Children's Hospital, Hamilton; Children's Hospital of Eastern Ontario, Ottawa; and British Columbia Children's Hospital, Vancouver) were eligible to participate in this qualitative study. The study received ethics approval at each site. Purposeful sampling was used to create a sample approximating the known distribution of JIA subtypes (9). The aim was to include parents of newly diagnosed patients (less than 1 year since diagnosis) as well as parents with different levels of experience caring for a child with JIA (1-4 years since diagnosis and more than 4 years since diagnosis). We also aimed to include parents of children with varying levels of disease severity and thus used medications ever taken as a proxy for this. French-speaking participants were recruited for focus groups in Ottawa, and English-speaking parents were recruited at the other sites. The only exclusion criterion was non-French-or non-English-speaking parents at the respective sites. The attending rheumatologists identified potential participants at each site and introduced the study to parents. Parents who indicated interest in participating were approached by each center's research assistant for further information. Written informed consent was obtained for parents participating in the focus groups, and verbal informed consent was obtained from those participating in telephone interviews.
At each site, we aimed for six to eight participants per focus group (17,18). The research protocol was amended to include 10 individual telephone interviews (6 in Hamilton and 4 in Halifax to supplement low focus group turnout). A semistructured interview guide was developed for use in both the focus group interviews and telephone interviews. The guide was developed by the investigators and included five broad questions to elicit overall experiences followed by multiple probes to get a better and deeper understanding of the meaning of responses (Table 1) (19). General introductory questions about research were asked, followed by questions focusing on perceptions about JIA research, how information about JIA (including new information from research) was obtained and used, and what information was of the most interest to them. The focus groups and interviews were audio-recorded, transcribed verbatim, and deidentified for analysis. The French focus group interviews were transcribed directly into English by a bilingual transcriptionist.
The data from the transcriptions were analyzed using a general inductive approach (20). An inductive approach allows research findings to emerge from the frequent, dominant, or significant themes inherent in raw data, without the restraints imposed by structured methodologies. Each transcript was read in its entirety by two investigators (JW, BRD). Open coding in NVivo 11 software (QSR International Pty Ltd., version 11) was used to capture key thoughts (eg, text segments) related to the primary research question (barriers and facilitators to the use of information from JIA research). This was an iterative process whereby the identified text segments were sorted into meaningful categories/ subcategories (codes/subcodes) and revised as more interviews were conducted across the four sites. The two investigators (JW, BRD) worked independently and met after coding each transcript to compare results. Coding differences were resolved through discussion, and a third investigator (ES) was consulted as necessary.

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A code book, which aims to operationalize a set of codes, was developed and acted as a guide to help analyze interview data (21). The final code book consisted of 17 codes and 47 subcodes.

RESULTS
In total, 28 parents of 23 children with JIA participated in the study (18 in focus group interviews and 10 in individual telephone interviews). The median duration of the focus group interviews was 65 minutes (range: 59-70). The median duration of the individual telephone interviews was 19 minutes (range: 11-43). Disease and demographic characteristics are summarized in Table 2.
We identified four overarching themes that captured potential facilitators and barriers to the uptake of information from research: 1) parents are generally unaware of the nature of JIA research (barrier), 2) outcomes research is of high priority to parents (facilitator), 3) there are preferred methods of dissemination of JIA-related information, including research-related information (facilitator), and 4) disease status affects the information needs of parents (facilitator). Detailed descriptions of these themes and subthemes (italicized) follow with illustrative quotes in Table 3.
Parents are generally unaware of the nature of JIA research (barrier). There was a lack of awareness amongst participants about JIA research (eg, topics of research, findings from research). Some parents were aware that JIA research was being conducted within Canada, but none of the participants were familiar with the ReACCh-Out study or other research findings on JIA. If parents were to become more aware of the types of research being conducted, particularly if they align with their own research priorities, we hypothesize that parents may be more inclined to initiate discussions with their child's pediatric rheumatologist about research findings or actively seek further information in these areas.

Outcomes research is of high priority to parents (facilitator). (i) Knowing the "landscape"
and what the future holds are important to parents. Having a sense of what to expect for their child in the short and long term was extremely important to parents. Parents reported a need to understand the potential disease trajectories for their child. Parents also focused on what life would be like for their child in adulthood in relation to function, pain, and chances of "outgrowing" JIA.
(ii) The long-term side effects of medications are important to parents. Parents wanted information regarding other children's experiences with medications in relation to side effects and efficacy, as well as how the medication will affect their child in the long term. Taken together, we viewed this overall theme as a facilitator because the information needs of parents align with ongoing initiatives by multiple groups around the world that are following cohorts of children with JIA (22).
There are preferred methods of dissemination of any JIA-related information, including research-related information (facilitator). (i) JIA-related information from the internet is not considered trustworthy unless endorsed by a trusted source. Parents described a distrust and fear of the internet regarding disease-related information. They voiced concerns about the validity of the information presented online as well as the potential to be led astray with too much or irrelevant information. In contrast, if the online material is endorsed by a trusted source (eg, the doctor, the hospital, or an organization such as The Arthritis Society), they would be more likely to use the internet as an information-finding tool.
(ii) Parents value the health care providers as the most trustworthy source of JIA-related information, including new information from research. Parents indicated that they strongly value the information delivered by the health care team, particularly the  pediatric rheumatologist. This pertained to information in general, but there was also a belief and expectation that any new relevant information from research would be communicated directly to them by their child's doctor.
(iii) Preferences for delivery of research-related information varies among parents. We received a wide variety of responses when parents were asked how they would prefer to receive new research information about JIA. In addition to communication from their health care team, some parents would also like to have information emailed to them, whereas others valued having a piece of paper in hand. Being able to watch a video or log into a website was suggested by some parents. Having the ability to tailor the information (eg, type of information, flexible access to information) also emerged as a desirable attribute. Finally, not surprisingly, parents noted that any information presented must be easy to understand and accessible to them. The findings presented within this theme represent parent preferences for how they would like to receive JIA-related information, including new information derived from research. We viewed this theme as a facilitator because it can help to inform the development of KT initiatives.  : At the beginning we looked, but now the condition is more routine.
[McM]: In the last little bit, she's been on a really good medication regime for a while now that has been really working and we haven't had any flare ups or anything like that so not really [looking for new research findings] as much in the last little bit.
[CHEO]: We were a bit saturated with all the information and once we were stabilized, we said, well we're functioning.
[IWK]: I know there will probably be a point in time when she needs her medications changed or she has a flare-up or something because she's young and I know it is just not going to go away, so I think I am prepared for that to happen mentally at this point, but I think only because I've been able to give myself a break for a little while.

Disease status affects the information needs of parents (facilitator). (i) At the time their child is diagnosed
with JIA and during disease flares are key time points when parents are most interested in receiving disease-related information. Parents identified diagnosis and disease flares as time points when they were more likely to seek out new information about JIA. Seeking information appeared to stem from a need to have a thorough understanding of the disease, both as a coping mechanism and as a way to provide the best care for their child. Parents recalled that making decisions about starting new medications was particularly challenging. Concern for their child and the emotional toll of making these decisions motivated parents to seek out all the available information. These time points during the disease trajectory could be leveraged as facilitators for KT as parents are likely to be highly interested and engaged in learning about JIA. We speculate that this would include learning about new developments from research if they were to help parents have a comprehensive picture of possible disease outcomes and inform the decision-making process.
(ii) During periods of stable disease, parents are less likely to seek or need new information about JIA. Contrasting with the need for information at diagnosis or during flares, parents were less inclined to want or seek out new information when their child's disease was stable. There was a sentiment of needing some respite from thinking about JIA. Overall, we feel that an improved understanding of the preferences for the timing of information delivery as described in this theme will inform the design of interventions in the future.

DISCUSSION
This is the first study to evaluate the barriers and facilitators to the use of knowledge from research by parents of children with JIA using the KTAP framework. We discovered that parents were generally unaware of information coming from JIA research and therefore may not be fully benefiting from new knowledge as it becomes available. Parents are most keenly interested in understanding what the future holds for their children in terms of the disease course and medication side effects. It is imperative that researchers communicate this knowledge effectively to parents as we believe it has the potential to improve the care and experience of families of children with JIA.
An important theme that emerged from our study was the overall lack of knowledge about the nature of specific research studies, although many parents knew that research was taking place. The parents in this study (all of whom were linked to academic centers with active clinical research programs) were generally unaware of the ReACCh-Out study and its results, despite it being the first pan-Canadian inception cohort study. Reasons for this KT gap are potentially multifactorial. Our group has performed a related study examining the barriers faced by Canadian pediatric rheumatologists (PRs) and allied health professionals (AHPs) when translating research findings into clinical care (23). Many PRs could not remember all of the specific results of the ReACCh-Out study, despite some participants being ReACCh-Out investigators. Limited time available to spend with patients and families in the clinic was also felt to be a barrier to sharing research findings with parents during clinical encounters. In addition, PRs and AHPs often limited the amount of information presented during a clinical encounter to avoid overwhelming parents.
Another obvious theme identified by our study was parents' desire for outcomes-based research. This complements the direction of many present-day research initiatives, specifically national and multinational JIA cohort studies. Beukelman et al (22) have recently identified and characterized 18 prospective JIA cohort studies, representing 37 countries and over 60 000 children. Four of these studies appear to have the ability to follow patients into adulthood, and 7 of the 18 studies have a specific focus on pharmacovigilance, which will also help to fill knowledge gaps about medication side effects. This type of JIA research is precisely aligned with several of the information needs identified by parents in this study. It is incumbent upon the research community to communicate this information to patients and families in a meaningful way.
The third theme of our study encompassed important information about preferences for receiving information about JIA, including research-related information. The internet was not perceived as a trustworthy source of disease-related information for parents unless a health care provider or other trusted source had endorsed a specific site. Similarly, in a study of 400 adults surveyed in Australia, the most preferred mode of online navigational support was involvement of health professionals (24). Parents have a belief and expectation that any new relevant information from research will be communicated directly to them by their child's doctor; however, given the known barriers that PRs face in providing research knowledge to parents in the clinical care setting, PRs are unlikely to be able to fully meet this expectation.
Many KT strategies focus on the behavior of health care professionals; however, an emerging approach to KT is to direct research information to health care consumers (8). This approach could help to overcome the barriers to KT cited by health care providers (16). In our study, parents described the modalities by which they would prefer to receive information, including emails from their health care team, written handouts, videos, and secure websites, and they noted that the ability to tailor the information to their specific context would be highly desirable. Two recent reviews evaluating patient-mediated KT interventions in adults and children, respectively, showed a range of effects (positive, mixed, unclear) in relation to changes in knowledge, communication, decision making, and behavior (7,8). Although patient-mediated KT tools offer a promising approach to communicating health information, both reviews cited a need for more research in this area, with a focus on increased methodological rigor.

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Some of the KT gaps identified in our study may be addressed in the future by looking at contemporary best practices in KT. Passive modes of KT are insufficient, and a more transparent and engaged approach to knowledge creation and translation are required (25). This model of having patient and other knowledge-user engagement throughout the research process is called integrated KT (IKT). The ReACCh-Out study was designed over 10 years ago and employed conventional end-ofgrant KT practices to disseminate knowledge (eg, conference presentations, manuscripts). Since then, there has been a shift toward engaging patients early in the research process as evidenced by large organizations, such as the United States-based Patient-Centered Outcomes Research Institute (PCORI) (26). In Canada, Outcome Measures in Rheumatology (OMERACT) has been a pioneer in including patients as stakeholders in research for over a decade (27).
Although there is emerging evidence that IKT can lead to improved application of research knowledge through various mechanisms, there is still a paucity of evidence to inform best practices for conducting IKT (28). Therefore, although we speculate that an IKT approach has the potential to improve uptake of JIA research information by parents, it is important to acknowledge the lack of a solid evidence base to inform IKT activities in general. In a scoping review of IKT interventions, Gagliardi et al found that, overall, the interventions were poorly described, evaluated, and reported (5). The lack of evidence-based methodologies was also highlighted in a recent paper examining parent coengagement in pediatric research (29). Engaging patients ineffectively or poorly does not come without risk, particularly the false appearance of inclusiveness or "tokenism," which undermines and threatens the fundamental underpinnings of patient engagement (30). Second, without evidence to support best IKT practices, there is a risk of wasting valuable resources, such as people's time and funding, on ineffective practices. It is therefore critical for researchers and groups who are leaders in IKT to systematically evaluate their approaches and share their findings with the broader research community to move the science of IKT forward.
The final theme that we identified in this study suggests that the timing of information delivery is important in the uptake of JIA knowledge. KT interventions should be timed when parents are most inclined to use information from research, such as at the time of medication change, disease flare, or when first receiving the diagnosis of JIA. Parents in this study highlighted a need for this information to be accessible beyond the confines of the clinic visit and tailorable to their specific needs. Optimal information delivery is therefore likely to require a combination of face-to-face communication with health care providers and the ability to access this information following the visit for further review and reinforcement. Parents also expressed a desire to take a break from seeking or receiving new information about JIA when their child was medically stable. This may present a potential barrier to the success of a KT intervention if patients and families are targeted when the disease is stable.
Limitations of this study include the absence of participants from community-based rheumatology clinics because most children with JIA in Canada receive most or part of their care in university-based clinics. The parents in this study were highly educated with three-quarters having a bachelor's degree or higher. Because of self-selection, we speculate that participants could be more interested in research than the general clinic population. Finally, this study occurred in the context of Canadian pediatric rheumatology centers and may not be indicative of other jurisdictions in the world.
This study has led to a better understanding of Canadian parents' perceptions of research in the area of JIA, and existing gaps in the translation of research knowledge. We have begun to identify parent preferences of how and when they would like information presented to them about JIA, including new findings from research. With this information as a foundation, we can now move onto the next phase of the KTAP, which is to select, tailor, and implement a KT strategy. We plan to bring together a multidisciplinary team that includes patients, parents, health care providers, KT scientists, and health informatics experts to define what is needed in this phase and then co-create the intervention. Simultaneously, we will evaluate the co-creation process to build on the existing literature on best practices in patient engagement and IKT.