Research and knowledge transfer priorities in developmental coordination disorder: Results from consultations with multiple stakeholders

Abstract Background Priority‐setting is a way to focus research and knowledge translation (KT) efforts for community‐based research partnerships (CBRP). Objective To identify the developmental coordination disorder (DCD) research and KT priorities of stakeholders in Quebec, Canada, and their perceptions regarding the implementation of a CBRP. Design An advisory committee oversaw the research process including an online survey and four community forums. Setting and participants The survey was posted online and four community forums were organized. Participants included parents of children with DCD, adults with DCD, health professionals and school staff. Main variables Stakeholder generated research and KT priorities, and optimal CBPR conditions. Outcome measures Participants selected their top five priorities based on a predefined list of 16 research and 12 KT priorities determined in collaboration with the advisory committee. They also rated the importance of various CBRP conditions. Preliminary survey results were discussed during the forums. Results Survey participants (n = 395) identified interwoven research and KT priorities where access to services was considered to be essential: supporting children at school; improving DCD identification and diagnosis; preventing secondary consequences; improving the organization of services and implementing effective services. Forum participants (n = 52) confirmed the relevance of these priorities and supported the establishment of a CBRP inclusive of all stakeholders to improve DCD services, research and KT. Discussion and conclusions A general consensus emerged among all groups, but adults with DCD were more concerned with employment than were the other stakeholder groups. These findings are presently being used to shape an ongoing, online CBRP.

munity awareness about the condition might particularly benefit from developing CBRP, since CBRP facilitate the sharing of knowledge to reduce health discrepancies. 11 Developmental coordination disorder (DCD), a condition characterized by coordination difficulties that develop early on and impact on children's daily lives, 12 is an area where a CBRP could be particularly beneficial. It is well recognized that there is a general lack of awareness about the condition, 13,14 and that there is inequitable access to the services. 13 These services are however required to address the issues these individuals face such as academic difficulties, lower quality of life and poor peer relationships. 16,17 Best practices for DCD stress the need for collaborative work and capacity building to increase equitable access to services and raise community awareness. 13,18 Community-based research partnerships could thus well support the implementation of DCD best practices by bringing together different stakeholders to advocate and design interventions aiming at increasing community awareness and access to services.
In the light of the lack of information in the scientific literature regarding the development of a DCD CBRP, it would seem prudent to begin the partnership by identifying the DCD priorities for KT and for research, based on different stakeholders' perspectives, and to explore stakeholders' interest for engaging in a research partnership. This paper thus presents the results of a study conducted to identify research and KT priorities in DCD in Q uebec, Canada. Stakeholders' perceptions regarding the development of a CBRP are also presented.

| Study design
This descriptive study was grounded in community-based participatory research 11 and used an integrated knowledge translation (iKT) approach to involve stakeholders throughout the research process and to foster the implementation of study results. 15 The study was approved by the ethics committee of the CR CHUS, and all study participants provided informed consent.

| Population
The targeted population for this study were DCD stakeholders living in the province of Quebec, Canada at the time of the study. Anyone above 18 years old having an interest in DCD was eligible to participate. Participants were categorized into one or more stakeholder groups: parents of a child with DCD, adults with DCD, health-care and education professionals, and 'others' such as community-based stakeholders (eg day care staff, sport coaches) and researchers.
Research participants were recruited via social media, an email campaign and word-of-mouth, in collaboration with an advisory committee and study partners (the provincial DCD association and four rehabilitation and health-care centres).

| Study procedures and data collection
An advisory committee was convened to oversee the research process, from study design to iKT. There were clear selection criteria established for this committee, and potential candidates were interviewed to determine if they met the selection criteria. The aim was to have a committee that represented a wide variety of stakeholder groups. Candidates were thus questioned regarding their interests, experience and expertise, and their desire to contribute to advancing DCD research and KT. Financial compensation guidelines were also established for the committee. Recruitment procedures for the advisory committee members aimed to reach and provide equal and fair engagement opportunities to as many people as possible (as opposed to selecting stakeholders known by the research team). 2 Thus social media, an email campaign and word-of-mouth were used. The recruitment campaign was conducted in collaboration with the project partners (ie, the provincial DCD parent association and four rehabilitation centres). In all, nine stakeholders contacted the research team (three parents, including one studying to become a special education teacher, one young adult with suspected DCD, and four clinicians including two involved with the parent association and one completing a graduate degree). They were all interviewed. Since they all met the selection criteria, represented different perspectives and were from different regions, they were all invited to join the advisory committee. All agreed to do so. The activities of the advisory committee took place during online committee meetings, and via email exchanges. Eight online meetings were organized during the 12month duration of the study. During the kickoff meeting, committee members were provided with a short training session about clinical research and were invited to discuss and finalize the objectives and procedures governing the committee. Subsequent meetings focused on the attainment of research objectives: reviewing the study design and data collection tools, discussing recruitment strategies, interpreting results and participating in long-term iKT and partnership activities. Members who did not attend a meeting were provided with the materials via email and their input was requested for the various research objectives. Some members attended all meetings, while other only responded only to email requests.
The advisory committee reviewed the online survey to be sent to DCD stakeholders to ask them to select their research and KT priorities. This survey was based on a study conducted to identify research priorities in cerebral palsy in Australia. 8 One of the authors, the project's principal investigator (CC) contacted the Australian team to access the complete list of proposed themes that had been generated by the cerebral palsy stakeholders. Meetings with the research team and the advisory committee were organized to review each of these potential themes for relevance to DCD and for clarity in the present study's provincial context. They were also encouraged to explore if new priorities should be included. The committee members engaged in a consensus process which resulted in the identification of 16 research priorities and 12 KT priorities. These priorities were proposed in the online survey, where stakeholders were asked to select their top five research and KT priorities among the ones proposed.
The online survey was circulated to potential participants online via social media, the advisory committee and project partners. In addition to the research and KT questions, participants were also asked to rate the importance of optimal CBRP conditions. These conditions were modified from those of Wallerstein and colleagues. 11 A Likert Scale (from 1 -not at all important to 7 -very important) was used for the ratings. Open-ended questions allowed participants to list other priorities and partnership conditions, and to justify their selections.
Four community forums, defined as open assemblies where everyone having an interest in a particular topic is invited, 16 were organized in different cities across the province, approximately one month after the survey was launched. Preliminary survey findings (n = 308) were presented and discussed in small groups moderated by a member of the research team. At the end of the forum, participants were asked to rate their satisfaction with the forum and the extent to which the forum met their expectations. A 5-point Likert scale was used and forum participants could provide additional comments. Members of the research team acted as note takers during the forums to ensure key comments were captured.

| Statistical analysis
Descriptive statistics were used to describe survey participants and satisfaction with forums. As recommended, 17,18 research and KT priority rankings were scored using a regular-interval scale (scores of 5, 4, 3, 2, 1) or an incremental interval scale wherein regular-interval values were squared (scores of 25,15,9,4,1). Both scales yielded similar results, but the incremental interval scale was adopted as it better reflected differences between priorities. Mean priority scores (and standard deviations) were calculated, and the top five priorities were identified for the entire sample, and by stakeholder subgroup.
Means and standard deviations were also used to assess the importance of CBRP conditions. A thematic analysis 19 was performed on the open-ended survey questions and forum field notes to understand reasons underlying the participants' selection of research and KT priorities, as well as their perception of the optimal conditions required for the CBRP.
The quoted comments presented below were freely translated from French. Table 1 presents the sociodemographic characteristics of the 395 participants who completed the online survey. The most common stakeholder group was "parent of a child with DCD" (44%). Most parents reported that their child was under the age of 12 (89%), had a formal diagnosis of DCD (96%) and had at least one other neurodevelopmental disorder (65%). In contrast, 33% of 'adults with DCD' had a formal DCD diagnosis. Some participants self-identified as being members of more than one stakeholder group (eg 15% of parents were also education professionals). Most 'healthcare' and 'education' professionals were occupational therapists (63%) and teachers (60%), respectively. In the open-ended survey questions, most new priorities were closely related to the above-mentioned top five priorities (eg, studying the impact of using a computer instead of hand writing at school; evaluating the impact of educational intervention plans). Newly identified priorities related entirely to better understanding and managing DCD comorbidities (eg, sleep and visual problems, learning disabilities).

| Survey
The participants' justification of their priorities suggested that they selected priorities based on their current situation and needs. They did, however, acknowledge that priorities might change over time.
School was difficult for that child, tiring, because his teachers did not know about DCD, we did not get help, and others' lack of awareness converted this condition into a disability. My priorities are grounded in the difficulties we have to face on a daily basis.
[Healthcare professional] I do not currently think about employment, but I am sure I will worry about that in the near future. [Parent] The priority justifications also shed light on how the top five priorities were closely interwoven. Identifying children with DCD was key to accessing services; and timely access to effective health, rehabilitation and educational services was key to supporting children and their families at school and preventing secondary consequences. Increasing DCD awareness was clearly the most important KT priority. Participants sought KT strategies to increase their own knowledge of DCD, but also to inform and empower teachers, families, physician and rehabilitation professionals, as well as society as a whole.
The lack of awareness about DCD is a big problem right now. You don't know what to do, who to ask for help; since it is invisible, you don't know how to explain it to others. Access to resources and help is difficult, and there are almost no services.     This generated many exchanges about how best to use the Internet and social media to support an CBRP.

| Community forums
Satisfaction with community forums was high (4.8/5) and forum participants reported that the forums met with their expectations  other paediatric conditions, supporting children at school was a priority for most stakeholder groups. This may be explained by the widely established lack of awareness about DCD and its consequences in schools, 14,20 and by the concurrent fact that children's difficulties (eg, play differences, academic difficulties) often first emerge at school, where DCD impact on self-esteem and quality of life also become apparent. 21 Furthermore, our collaborative research process resulted in a high proportion of participants being education professionals and parents. Since priorities are grounded in individuals' daily life, it is not surprising that school was deemed a high priority.

| D ISCUSS I ON
Supporting children at school closely relates to the second priority, DCD identification and diagnosis. Our results support widely reported findings that physicians and health-care professionals generally declare having limited knowledge about DCD. 12,15 Increasing DCD awareness could in turn increase access to services, an issue closely related to the top five priorities.
Multiple calls in the scientific literature have been made to reorganize school and health services (Priority #4) in order to foster access to early intervention, and to implement response-to-intervention service delivery models and coordinated services. 13,18 It is also accepted that interventions should be evidence-informed, and anchored in functional approaches, 22 which coincides with Priority #5. Such service delivery models could prevent secondary consequences, such as poor self-esteem 21 (Priority #3).
Our results also showed that there was a general consensus among stakeholders for both research and KT priorities, which offers a unique opportunity for collaboration between stakeholders. The main study limitations were that we collected self-reported information for sociodemographic information and thus we could not verify that parents indeed had a child with a diagnosis of DCD.
Priorities also provide a limited snapshot in time, for a given population in a given context. Priorities may change over time and might not be generalizable in other cultures, health-care and education systems, even if the issues with regards to awareness and access to services are quite consistently reported across countries in the scientific literature. Future studies should track priorities longitudinally and replicate the process across different cultures and settings. More efforts to include stakeholder groups that were underrepresented in the present study (eg, adults with DCD and physicians) are also needed, and priorities for children with DCD also need to be explored.

| CON CLUS ION
This article contributes to the generation of knowledge about how to best foster patient and stakeholder engagement in research in order to ensure that research efforts are aligned with their priorities.
Specifically, it illustrated a process of using different research methods, including an advisory committee, online surveys and community forums, to engage with families, clinicians, teachers, adults with DCD and researchers. This process went beyond traditional identification of research priorities as it also explored the need for knowledge transfer and opportunities to maintain collaborations through the establishment of an academic community-based partnership.
The research and KT priorities identified in this study inspire our current studies aimed at fostering school success and participation for children with DCD, and access to diagnosis and services. The partnership that is presently being established is also being used to support recruitment for DCD studies, the transfer of knowledge and information sharing with stakeholders, and to foster an ongoing conversation with stakeholders about research and KT priorities.

ACK N OWLED G EM ENT
This study was funded by a grant from the Canadian Institutes of Health Research. The authors wished to thank all members of the PRO2TAC study, including the advisory committee members, research participants, and the research team. The data that support the findings of this study are available from the corresponding author upon reasonable request.

CO N FLI C T O F I NTE R E S T
The researchers have stated that they had no interests which might be perceived as posing a conflict or bias.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author upon reasonable request.