Building capacity for leadership in family engagement in neurodevelopmental and child health research: A qualitative evaluation of the Family Engagement in Research Leadership Academy

Building capacity for leadership in family engagement in neurodevelopmental and child health research: A qualitative evaluation of the Family Engagement in Research Leadership Academy | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Building capacity for leadership in family engagement in neurodevelopmental and child health research: A qualitative evaluation of the Family Engagement in Research Leadership Academy Alice Kelen Soper, Samantha Micsinszki, Sarah Ali, Donna Thomson, and 6 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8583117/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background: The Family Engagement in Research Leadership Academy is a 10-week (30 hours), online McMaster University Certificate of Completion for researchers and family members championing family engagement in neurodevelopmental and child health research. The Leadership Academy consists of weekly 2-hour online synchronous sessions, small group mentorship, an individual Leadership Learning Plan, and a 3-minute ‘pitch’ presentation about a proposed project or personal vision for family engagement leadership. Throughout the Leadership Academy, learners build knowledge in five core competencies of family engagement leadership (self-awareness, communication, empathy and compassion, advocacy, and entrepreneurship) and the skills to apply these competencies at organizational and community levels. The primary aim of this qualitative study was to identify learners’ perceptions of the Leadership Academy, and to explore how they were applying family engagement leadership at organizational or community levels. Methods: Ten out of 21 graduates of the second and third Leadership Academy cohorts (2022-2023) agreed to participate in this study. We conducted semi-structured interviews after completing each course cohort. We analyzed qualitative data inductively using thematic analysis. Results: Three themes generated related to learners’ course satisfaction: diverse means of learning; sense of community; and positive and supportive learning environment. Learners reported that they were planning to or were actively applying course learnings to their leadership roles and career development. Learners indicated a desire to stay connected and continue to collaborate after the course. Conclusions: The Leadership Academy is a learning experience that has potential to build capacity for family engagement in neurodevelopmental and child health research at organization and community levels by training champions in family engagement leadership core competencies and practices and creating a network of leaders. Pediatrics Family Engagement in Research Patient-Oriented Research Leadership Academy Child Health Research Neurodevelopmental Disability Online Education Family Members Researchers Qualitative Research 1. Background Engagement in research is broadly defined by the Canadian Institutes of Health Research (2014) as the “ meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation ” that occurs between researchers and people with lived and living experience (PWLLE), such as family members ( 1 ). Engagement can occur in research, education, and healthcare systems and at various levels including at the project, program, organizational, and institutional levels as well as in policy and governance ( 2 , 3 ). In response to a growing need to train researchers and family members on how to meaningfully engage in neurodevelopmental disability (NDD) and child health research, Canadian family leaders and researchers at CanChild Centre for Childhood-Onset Disability Research at McMaster University co-developed the Family Engagement in Research (FER) Course ( 4 ), in partnership with Kids Brain Health Network and McMaster Centre for Continuing Education. Since the FER Course launched in 2018, over 750 people including researchers, healthcare providers, and PWLLE have completed the course across 28 cohorts and 24 countries. The FER Course has been shown to equip learners with the knowledge, skills, and self-confidence to engage in child health research projects and support engagement longer-term ( 5 , 6 ). In 2020 we conducted a needs assessment to learn about FER Course graduates’ interests in further training in family engagement in NDD and child health research. At this time, there were 132 FER Course graduates and 40 completed the needs assessment. Key topics of interest included engagement leadership at the organizational and community levels, in policy work, and engaging diverse populations. Based on the literature ( 7 – 9 ), our research team’s expertise, and feedback from FER Course graduates (including both researchers and PWLLE) we identified that further training should have a strong focus on family engagement leadership at an organizational level. The Leadership Academy was developed to mentor and mobilize champions who will advocate, inform, support, and lead organizational and community efforts in family engagement. The Leadership Academy is a 10-week online McMaster University Certificate of Completion course that consists of weekly 2-hour online synchronous sessions, small group mentorship, an individual Leadership Learning Plan, and a 3-minute ‘pitch’ presentation about a proposed project or their personal vision for family engagement leadership ( 10 ). For the small group mentorship, learners are placed into groups at the beginning of the course to facilitate peer mentoring throughout the course. The course is built upon five core competencies of family engagement leadership (self-awareness, communication, empathy and compassion, advocacy, and entrepreneurship) identified by our team, which are embedded into learning activities and discussions across the course. This framing of the course content enabled learners to focus in greater depth on the issues they, as FER Course graduates, have identified as particularly important to their development as family engagement leaders, for example, strengthening skills in advocacy and communication. See Micsinszki et al. for a description of the development of the Leadership Academy and a discussion of the core competencies of family engagement leadership ( 10 ). The Leadership Academy launched September 2022 with the goal of supporting 24 FER Course graduates across two cohorts to develop leadership skills in family engagement. From the outset we planned to deliver and evaluate two cohorts using a qualitative approach to ensure the course was meeting the needs of learners. Due to delays in obtaining approval from our ethics board, we were unable to evaluate the first cohort. However, this provided an opportunity to make improvements based on course instructor and learner feedback (e.g., discussions were increased from 1.5 to 2 hours, more hands-on learning activities were integrated). The course offered to cohorts two and three were the same, other than having been delivered on different learning platforms (Avenue to Learn in 2022 and Microsoft Teams in 2023). These cohorts were evaluated as planned as is reported in this paper. 2. Methods 2.1 Study Design and Aims This qualitative study involved interviews with learners who completed the Leadership Academy and consented to participate. The primary aim of this qualitative study was to identify learners’ perceptions of the Leadership Academy and to explore how they were applying family engagement leadership at organizational or community levels. 2.2. Eligibility and Recruitment Twenty-one learners enrolled in the Leadership Academy between September 2022 and 2023 and were eligible to participate in the study. Learners included researchers (e.g., PhD students) and family members (e.g., parents of children with NDD) who were graduates of the FER Course. The Leadership Academy was designed for individuals who aspired to take a leadership role within an organization or in the community. Learners may have had previous leadership experience either in health research or in other areas of their life (e.g., member of a Board of Directors), however, this was not required. To be considered for the course, researchers and family members were required to complete an application form which included a variety of questions for our team to determine their suitability for the course including their plans to champion family engagement in research, practice, and policy; and the qualities and skills they hoped to gain through the course. Learners did not have to participate in the research study to take the course. The learners were FER Course graduates who were recruited through social media channels, the FER newsletter, and word of mouth. This study received ethics approval by the Hamilton Integrated Research Ethics Board, #15188. 2.3. Data Collection Qualitative data were collected through focus groups and semi-structured interviews. Data collection spanned two weeks after the second cohort and two weeks after the third cohort. The interviews and focus groups ranged from 30 minutes to one hour and were conducted through Zoom Videos Communications. The audio files were transcribed by the Zoom Otter AI system, and all transcripts were manually reviewed and cleaned by a research assistant. 2.4. Data Analysis Thematic analysis was used to generate codes and themes from the data. Following Braun and Clarke’s guidelines for thematic analysis ( 11 ), initial familiarization of the data was conducted by two authors (AKS and SA) by reading the transcripts. Using an inductive approach, AKS and SA reviewed and coded excerpts of text from the transcripts in separate Excel files. The transcripts were coded verbatim to ensure fidelity to learners’ language and perspectives. AKS and SA compared and discussed the excerpts and corresponding codes from the first two transcripts. The third and fourth transcripts were coded independently by AKS and SA, who then met to discuss and further define new emerging codes. The preliminary codes and themes were reviewed by SM and then discussed as a group over several meetings between AKS, SA, SM and AC, to develop a flexible framework of codes and emerging set of themes. The analysis of the final six transcripts was divided between AKS and SA. Regular weekly meetings were held to discuss, revise, and add or combine codes that were consolidated into final themes. It is important to acknowledge the roles of the co-authors involved in data analysis. AKS and SA, serving as research assistants, had little or no involvement with the development and delivery of the Leadership Academy. Being removed from the Leadership Academy may reduce confirmation bias in interpreting the results ( 12 ). In contrast, co-authors, SM and AC, were co-developers and instructors of the Leadership Academy. Their involvement in the analysis was peripheral, reviewing, and providing feedback on the coding framework. This approach allowed for contextual insights and oversight, while minimizing potential bias. 3. Results Of the 21 learners enrolled in the second and third cohorts of the Leadership Academy, 10 participated in this study, including six family members and four researchers. All learners were female, and the majority (n = 8) of whom were in Ontario, Canada. The demographic characteristics of these 10 learners are reported in Table 1. Learners had a wide range of prior experiences related to family engagement leadership. At the time of the study, some learners held leadership roles in organizations or were significantly involved at project levels. Others were actively seeking career opportunities in family engagement. Table 1. Learner Role N Family member 6 Parent 5 Sibling 1 Researcher 4 PhD Student 1 Post-Doctoral Fellow 1 Research Coordinator 1 Mid-career Investigator 1 3.1. Perceptions and Satisfaction with the Course Learners shared their perceptions and satisfaction with the Leadership Academy. Three themes emerged from the data with respect to the qualities of the Leadership Academy that contributed to their satisfaction. These themes included: (i) diverse means of learning; (ii) sense of community; and (iii) positive and supportive learning environment. In this section, we elaborate on these themes and how they contributed to learners’ satisfaction with the Leadership Academy, as well as suggestions to improve the course. 3.1.1. Diverse Means of Learning The Leadership Academy includes diverse means to learn and apply the course content. These include access to educational materials (readings, videos, tools), weekly synchronous sessions (involving small group discussions and guest speakers), the development of a personal Leadership Learning Plan through self-reflection and tailored mentorship, and a 3-minute elevator pitch presentation. Overall, learners were satisfied with the multiple means of learning: “ I really like the format... We had readings prior to each class, as well as then having guest speakers come in as panelists and in between weaving in the opportunities for us to work in small groups to refine our leadership plan.” These diverse means of learning course content are described in greater detail in the sections below. Small Group Learning Through Synchronous Sessions . While there are core educational materials, learners emphasized the usefulness of small group learning that occurred during synchronous sessions: “ There were so many amazing lessons I learned through the individuals in our class, as well as the material.” Another parent highlighted how they unexpectedly learned from their peers: " we all bring something and let's really learn from each other. So, I wasn't expecting that I was going to learn so much from my classmates and grow together.” In this way, learners gained knowledge from the lived and professional experiences of peers and course mentors, which was described as a “special and unique” aspect of the course. Peer learning was done not only through sharing experiences but also through modelling skills during synchronous sessions, such as authenticity, as described by one parent: “the soft skills you're not, you can't teach them. You see [the mentors], like no one said be authentic, but that's what I took away because [the mentors] are authentic... Like, you model what you see when you're in a learning environment as a learner and not a teacher .” To improve the course, one parent suggested ‘rotating’ learners that composed the small groups to help develop relationships with more peers. This is because they felt they: “ only got to really get that discussion with half of the group...perhaps there could have been [other] relationships that I could have developed. ” Similarly, researchers suggested that having more time with other learners would have created more learning opportunities from other researchers about similar experiences and challenges they face. Leadership Learning Plan and Tailored Mentorship . The Leadership Learning Plan is a self-directed activity that each learner completes at the beginning of the Leadership Academy. The process of developing and refining a Leadership Learning Plan through personal reflections and tailored mentorship served as a means of identifying leadership goals. The Leadership Learning Plan helps learners identify their strengths and areas for growth, as well as develop a Leadership Learning Plan with goals aligned with one or two of the five core competencies presented in the course ( 10 ). Through this activity, learners “ discovered ” skills and abilities that they felt they already possessed. However, going through the exercise helped them explore how they could build on their skills. For example, a parent explained how they “ realized wait a minute, I am an entrepreneur because every time I see an opportunity, I take it. I am always on the lookout for those opportunities, and like. I'm always doing the elevator pitch whether I realize I am or not .” Course mentors provided feedback on the Leadership Learning Plan and learners were given the opportunity for tailored small group mentorship during three of the ten weeks in the course. The tailored mentorship also built confidence in leaders’ abilities, with a parent reporting that they “don't think I would feel confident without that mentorship… it was integral." A post-doctoral fellow suggested that the Leadership Academy offer more one-on-one opportunities with the course mentors as a form of on-going mentorship throughout the course. Elevator Pitch. A 3-minute elevator pitch is presented by each learner in the second last week of the course. The pitch presentation has been described by learners as both “ useful” and “challenging.” For example, a post-doctoral fellow found it helpful to “ market yourself in a way that you’re bringing something to their company or organization...if you’re pitching for someone to hire you for a position. ” While the pitch was described as useful to develop these skills and opportunities, a parent suggested that there be “ different types of pitches you know like one is more relational.” Learners suggested that there be more time to practice and receive feedback on the pitch and to receive examples from course mentors. The elevator pitch was also described as a means of building self-confidence. However, one parent noted how the confidence they felt they had gained was not sustained two weeks later when they participated in the interview: “ Two days after the pitch, I would have said, I feel so confident to go forward and to really focus on doing this… now I think there's been a little bit of time, and I’m feeling almost a little more insecure, which is maybe why I'm asking for more check-ins.” This parent’s reflection is a testament to the on-going support that learners indicated would be helpful to progress in family engagement leadership after the course. 3.1.2. Sense of Community Learners described the sense of community that the Leadership Academy fostered among peers and the course mentors: “ It does give you that sense of community, on this idea that we're all kind of on the same page.” The small group learning allowed learners to form meaningful personal connections and develop relationships that contributed to the sense of community. A parent explained that: “ you start to really care about your classmates, as well, and the journey that they're taking, and even now I can't wait for an update… we're really there for each other.” Researchers also shared that sentiment, with a mid-career investigator explaining how they “ really appreciated the new relationships that were created. ” This relational aspect of the course was described as a highlight. One parent shared that one of the “ highlights was getting to know a lot of different people... So, I think I really appreciated the relational element of being in learning together. " Overall, a sense of community was consistently described as a positive experience by both family members and researchers and a reason for satisfaction with the course, as expressed by a post-doctoral fellow: “I think it was not only just the content that brought satisfaction, but I think also the community that we became a part of.” 3.1.3. Positive and Supportive Learning Environment The Leadership Academy was described as a “ safe ” space for co-learning among a diverse group of family members and researchers. This environment was shaped by its members, who were described as “ empathetic ” and “ compassionate .” Another parent described the environment as being “v ery supportive and encouraging .” The course mentors were described as “accommodating”, contributing to a supportive learning environment. For example, a PhD student described the course mentors as “ open-minded ” and able to accommodate all learners with various levels of leadership experience. Learners also felt comfortable sharing personal stories and vulnerabilities, free of judgment, with one parent stating: “ there’s no judgment here, which is wonderful .” This parent explained that because the course was designed to create a supportive and inclusive space, people felt comfortable “saying anything” even when discussing sensitive topics. Not only was the environment conducive to sharing personal experiences and feelings, but it was also a “s pace to be open and honest about questions,” as described by another parent. 3.2. Applying Course Learnings to Leadership Roles The Leadership Academy influenced how learners were (i) applying what they learned to their current roles and (ii) planning to use learnings to pursue future positions in family engagement. Learners also expressed a desire to stay connected with other leaders. 3.2.1. Applying learnings to current roles Learners who already held a leadership role expressed how they were already integrating the insights from the Leadership Academy into their current work. For example, a sibling discussed how the course provided them with the “ space to reflect” on the state of family engagement within their organization. They reflected on what was going well, and how they could “ continue to push engagement” and implement “best practices.” This learner who already held a position of influence at an organizational level, was able to make informed recommendations for improving family engagement. Other learners described how they applied learnings to research projects. For example, a post-doctoral fellow described how the soft skills and the process of developing the pitch contributed to a grant they were preparing while taking the course: "I think what also happened simultaneously at the same time was I submitted a grant to the Canadian Institutes of Health Research… and I don't think I would have been able to do it without having taken [the Leadership Academy]. ” 3.2.2. Planning for future leadership roles and career development Some learners explained how they planned to implement their Leadership Learning Plan to support the attainment of leadership positions in family engagement. For example, a parent explained that they were “ trying to pursue opportunities and finding those ways to be that leader that I want to be.” One post-doctoral fellow had begun to use their Leadership Learning Plan immediately after completing the course to develop their career in academia: “I actually went out afterwards to implement and to use that [Leadership Learning Plan] as a leader and championing for a cause or a position that I was really passionate about in family engagement in research." For learners seeking leadership positions in family engagement, some discussed challenges navigating next steps to find and access opportunities. For example, a parent described that: “ it's sort of like well what's next? So, now that you've taken this course , I didn't feel like I'm prepared to go out and lead , but like if you're saying I'm taking this leadership course, then ideally is the intention to be ‘hey now go forth and be a leader?’ So, I didn't feel like I could do that, and maybe it's because the environment there is nowhere for me to go forth and be a leader . ” Similar challenges were expressed by other learners, who indicated a lack of opportunities to lead in FER. 3.2.3. Staying connected with other leaders Learners consistently expressed a strong desire to build and maintain connections after the Leadership Academy: “ I really wanted a way for us to stay connected, that's just something that I feel strongly about. That you know you make these really amazing connections, and then you know you kind of fizzle .” Some felt that that a community was already “ being built” through the Leadership Academy and hoped it could be sustained: “ now stay connected with the community, and I hope this community is something that we can continue to build off from.” In addition to expressing this desire for a network of leaders, learners provided concrete suggestions for fostering a lasting community. For example, researchers recommended holding annual or bi-annual online meetings or offering optional drop-in spaces where Leadership Academy graduates could share their progress and maintain the connections formed during the course. Establishing a community of practice could not only serve as a means of staying connected but also offer opportunities to learn from each other’s experiences. For example, a parent explained how a sustained network to “check-in on everyone” would allow people to share success stories and the challenges faced while implementing their Leadership Learning Plans. 4. Discussion 4.1. Importance of Synchronous Sessions, Small Group Learning, and Mentorship The weekly synchronous sessions are a fundamental component of the Leadership Academy because they created an environment for learners to engage in real-time, small group learning with peers and mentors. These sessions began with an informal conversation and check-in to get to know learners and establish trusting relationships. We wanted this to be a space for learners to be comfortable enough with their mentors and peers that they could then step outside of their comfort zone and learn together – like the Zone of Proximal Development in Vygotsky’s Sociocultural Development Theory ( 13 ). Creating a “brave space” (see Palfrey, 2017, p. 21)( 14 ) for ‘comfortable discomfort’, or what Taylor and Manning-Ouellette call the “growth zone”( 15 ) was essential in developing and delivering the Leadership Academy so that learners with diverse experiences and knowledge could share problems and learn together. Peer learning in leadership training can foster a greater sense of accountability, which is particularly important for self-directed and unprescribed approaches typical of leadership development courses ( 16 ). For example, the Bridging Leaders Program and National Health Fellows from McMaster University incorporate peer mentoring and consulting sessions for individual leadership development in the healthcare sector. Peer learning through the small group synchronous sessions was perceived as a strength of the Leadership Academy. This finding is a testament to the importance of this small group synchronous format for mentoring and building capacity in the next generation of family engagement leaders. 4.2. Opportunities for Family Engagement Leadership Graduates The Leadership Academy is designed to provide opportunities for connection, networking, and mentorship amongst current and emerging champions and leaders in family engagement. The intention when creating the Leadership Academy was for learners to plan for and create their own opportunities for family engagement leadership (e.g., through the Leadership Learn Plan and pitch presentation) ( 10 ). However, a challenge faced by graduates was the limited opportunities available to apply their Leadership Learning Plans and find champion and leadership positions at organization and community levels. These experiences reflect a broader challenge that organizations often lack sustainable infrastructure (e.g., training, appropriate funding, governance structures, and institutional models) to support engagement ( 17 , 18 ). We are aware of a few organizations in Canada that are working to embed engagement support into their infrastructure. For example, the Ottawa Model ( 18 ) was developed to guide meaningful engagement at an institutional level. Previous literature recommends that organizations shift towards a culture of engagement, which is a major facilitator in building sustainable roles for families – including in governance at a systems level ( 18 – 20 ). Recognizing this challenge, a next step for the Family Engagement in Research Program is to work in partnership with organizations and networks to create pathways for graduates to apply their leadership training to champion meaningful family engagement at organizational and community levels. An example of how this has already been done is the pathway that was created for FER Course graduates to partner on a national Canadian Institutes of Health Research team grant opportunity to form a national pediatric rare disease clinical trials network in Canada, which was successfully funded and is now called RareKids-CAN Network. At the time of the application, leaders of the Family Engagement in Research Program matched 12 FER Course/Leadership Academy graduates to the sub-platforms of the network that aligned with their skills, expertise, and research areas of interest. All 12 graduates were co-investigators on the grant application and continue to be involved and champion family engagement across the network. 4.3. Building a Network and Community of Practice Findings from this study highlight the need for a sustained network to support on-going leadership development through peer mentorship between FER Champions beyond the Leadership Academy. Building a sustained network is a priority of the Family Engagement in Research Program that aligns with our goal to provide FER Champions with ongoing training, networking, mentorship, and collaboration opportunities. There are existing models for peer mentorship in this field, such as the PiPER Community of Practice (CoP), the KBHN Implementation Science CoP, and Collaboration Hub through the University of Toronto. A similar approach through a CoP for FER Champions could support our goal to create a strong network of family engagement leaders at organization and community levels. CoPs can also serve as essential infrastructure to influence system level change through the exchange of knowledge, experience, and resources by champions ( 21 , 22 ). The development of a CoP composed of Leadership Academy Graduates could help advance coordinated efforts to build organizational capacity, including creating and sustaining roles for family leaders. 4.4. Strengths, and Limitations A strength of this study was the qualitative methodology that involved 10 in-depth interviews. Understanding learners’ perceptions of the course and the qualities of the course that supported their learning would not have been captured to this level of depth through quantitative measures. Three parent leaders (DT, CP, RM) were co-investigators in this project and co-led the development and delivery of the Leadership Academy. While we did not formally evaluate their involvement, we scheduled regular meetings to critically reflect on the progress of the project and embedded opportunities throughout to discuss experiences and involvement in the project. A limitation is that while from the findings we identified researchers’ and family members’ intentions to apply learnings, without a longitudinal component to the study, it is unknown how their leadership trajectories may be influenced by the Leadership Academy. This could be evaluated in a follow-up study looking at the trajectories over time. Furthermore, we did not ask about the specific content areas that were covered in the course, which may limit modifications we can make to improve the course. Finally, the cohorts evaluated in this study were delivered on different learning platforms, which does introduce some inconsistencies. 5. Conclusion This qualitative study provides early evidence that the Family Engagement in Leadership Academy Course is a positive learning opportunity and supports learners in building self-confidence and abilities to champion and lead in family engagement in a quickly evolving field. As organizations begin to prioritize meaningful family engagement it is important that people are hired who have the knowledge, skills, and expertise to lead these efforts. Furthermore, our findings highlight the importance of building a community for family engagement champions and leaders, so that both family members and researchers do not work in silos but instead work together to support the mobilization and implementation of meaningful family engagement practices. Abbreviations Community of Practice (CoP) Family engagement in research (FER) Patient-oriented research (POR) People with lived and living experience (PWLLE) Neurodevelopmental disabilities (NDD) Declarations Ethics approval and consent to participate This study received ethics approval by the Hamilton Integrated Research Ethics Board, #15188. Informed consent was obtained for researchers and family members to participate in the study. Consent for publication Not applicable. Funding Kids Brain Health Network funded the development and evaluation of the Family Engagement in Research Leadership Academy. AC is funded by a Canadian Institutes of Health Research (CIHR) Patient-Oriented Research Transition to Leadership Stream (Phase 1 & Phase 2) Award (Funding Reference number: 170668). Availability of data and materials The datasets generated and analyzed during the current study are not publicly available because only four co-authors (AKS, SA, SM, and AC) were approved by the Hamilton Integrated Research Ethics Board to access to the qualitative data. References CIHR. Strategy for Patient-Oriented Research [Internet] (2023) [cited 2023 Apr 1]. Available from: https://cihr-irsc.gc.ca/e/41204.html Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C et al (2013) Patient and family engagement: a framework for understanding the elements and developing interventions and policies. 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Health Res Policy Syst 13(1):33 Brooks SP, Ekpe Adewuyi E, Wasylak T, Thomson D, Davison SN, Storey K (2024) How to use communities of practice to support change in learning health systems: A landscape of roles and guidance for management. Learn Health Syst 8(3):e10412 Additional Declarations The authors declare no competing interests. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8583117","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":573359569,"identity":"e39f33ca-9c2f-4505-84fe-4909b835b716","order_by":0,"name":"Alice Kelen Soper","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAx0lEQVRIiWNgGAWjYPACG9K1pEGoAyRoOUyCFvn23oOPK2rOR/NPO/z484eKewz87QQ0Gpw5l2x45tjt3Bm308wkDpwpZpA4k0BAi0SOmWQD2+3cDdIJZgwH2xIYDBgIaJGfkWP+s+HfOaCW9M8fDv4DauF/QMAzN3LMGBvbDgC15BhIHGwAapEg5DCgXyQb+5KBfskpkzhzLIFH4gYBW0Ah9rHhm11u/+z0zR8qahLk+PsJ2MLAwIOXS4yWUTAKRsEoGAUYAAAf7kfEhEFm2gAAAABJRU5ErkJggg==","orcid":"https://orcid.org/0000-0002-7777-2274","institution":"McMaster University","correspondingAuthor":true,"prefix":"","firstName":"Alice","middleName":"Kelen","lastName":"Soper","suffix":""},{"id":573359570,"identity":"1ece9d62-874b-4347-9b35-8983bac14d78","order_by":1,"name":"Samantha 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University","correspondingAuthor":false,"prefix":"","firstName":"Sarah","middleName":"","lastName":"Ali","suffix":""},{"id":573359572,"identity":"f20d7425-9cc9-410b-a112-0ec006481d8e","order_by":3,"name":"Donna Thomson","email":"","orcid":"https://orcid.org/0000-0002-7515-9628","institution":"McMaster University","correspondingAuthor":false,"prefix":"","firstName":"Donna","middleName":"","lastName":"Thomson","suffix":""},{"id":573359573,"identity":"0a894c76-a7ed-4a74-a014-8e3908af1af7","order_by":4,"name":"Connie Putterman","email":"","orcid":"","institution":"McMaster University","correspondingAuthor":false,"prefix":"","firstName":"Connie","middleName":"","lastName":"Putterman","suffix":""},{"id":573359574,"identity":"2d302045-eb30-4f94-becc-cf34602b09c7","order_by":5,"name":"Rachel Martens","email":"","orcid":"https://orcid.org/0000-0002-2716-6495","institution":"University of 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10:45:41","extension":"html","order_by":4,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":72947,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-8583117/v1/d32db72e4aa3b423462eb337.html"},{"id":100382306,"identity":"2fcdb08a-509d-4916-bec1-e321aed97352","added_by":"auto","created_at":"2026-01-16 10:42:04","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":942430,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8583117/v1/a11b084c-7cde-4d90-87f9-359b5f2c8590.pdf"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003eBuilding capacity for leadership in family engagement in neurodevelopmental and child health research: A qualitative evaluation of the Family Engagement in Research Leadership Academy\u003c/p\u003e","fulltext":[{"header":"1. Background","content":"\u003cp\u003eEngagement in research is broadly defined by the Canadian Institutes of Health Research (2014) as the \u0026ldquo;\u003cem\u003emeaningful and active collaboration in governance, priority setting, conducting research and knowledge translation\u003c/em\u003e\u0026rdquo; that occurs between researchers and people with lived and living experience (PWLLE), such as family members (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Engagement can occur in research, education, and healthcare systems and at various levels including at the project, program, organizational, and institutional levels as well as in policy and governance (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). In response to a growing need to train researchers and family members on how to meaningfully engage in neurodevelopmental disability (NDD) and child health research, Canadian family leaders and researchers at CanChild Centre for Childhood-Onset Disability Research at McMaster University co-developed the Family Engagement in Research (FER) Course (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e), in partnership with Kids Brain Health Network and McMaster Centre for Continuing Education. Since the FER Course launched in 2018, over 750 people including researchers, healthcare providers, and PWLLE have completed the course across 28 cohorts and 24 countries. The FER Course has been shown to equip learners with the knowledge, skills, and self-confidence to engage in child health research projects and support engagement longer-term (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn 2020 we conducted a needs assessment to learn about FER Course graduates\u0026rsquo; interests in further training in family engagement in NDD and child health research. At this time, there were 132 FER Course graduates and 40 completed the needs assessment. Key topics of interest included engagement leadership at the organizational and community levels, in policy work, and engaging diverse populations. Based on the literature (\u003cspan additionalcitationids=\"CR8\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e), our research team\u0026rsquo;s expertise, and feedback from FER Course graduates (including both researchers and PWLLE) we identified that further training should have a strong focus on family engagement leadership at an organizational level.\u003c/p\u003e \u003cp\u003eThe Leadership Academy was developed to mentor and mobilize champions who will advocate, inform, support, and lead organizational and community efforts in family engagement. The Leadership Academy is a 10-week online McMaster University Certificate of Completion course that consists of weekly 2-hour online synchronous sessions, small group mentorship, an individual Leadership Learning Plan, and a 3-minute \u0026lsquo;pitch\u0026rsquo; presentation about a proposed project or their personal vision for family engagement leadership (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). For the small group mentorship, learners are placed into groups at the beginning of the course to facilitate peer mentoring throughout the course.\u003c/p\u003e \u003cp\u003eThe course is built upon five core competencies of family engagement leadership (self-awareness, communication, empathy and compassion, advocacy, and entrepreneurship) identified by our team, which are embedded into learning activities and discussions across the course. This framing of the course content enabled learners to focus in greater depth on the issues they, as FER Course graduates, have identified as particularly important to their development as family engagement leaders, for example, strengthening skills in advocacy and communication. See Micsinszki et al. for a description of the development of the Leadership Academy and a discussion of the core competencies of family engagement leadership (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe Leadership Academy launched September 2022 with the goal of supporting 24 FER Course graduates across two cohorts to develop leadership skills in family engagement. From the outset we planned to deliver and evaluate two cohorts using a qualitative approach to ensure the course was meeting the needs of learners. Due to delays in obtaining approval from our ethics board, we were unable to evaluate the first cohort. However, this provided an opportunity to make improvements based on course instructor and learner feedback (e.g., discussions were increased from 1.5 to 2 hours, more hands-on learning activities were integrated). The course offered to cohorts two and three were the same, other than having been delivered on different learning platforms (Avenue to Learn in 2022 and Microsoft Teams in 2023). These cohorts were evaluated as planned as is reported in this paper.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1 Study Design and Aims\u003c/h2\u003e \u003cp\u003eThis qualitative study involved interviews with learners who completed the Leadership Academy and consented to participate. The primary aim of this qualitative study was to identify learners\u0026rsquo; perceptions of the Leadership Academy and to explore how they were applying family engagement leadership at organizational or community levels.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2. Eligibility and Recruitment\u003c/h2\u003e \u003cp\u003eTwenty-one learners enrolled in the Leadership Academy between September 2022 and 2023 and were eligible to participate in the study. Learners included researchers (e.g., PhD students) and family members (e.g., parents of children with NDD) who were graduates of the FER Course. The Leadership Academy was designed for individuals who aspired to take a leadership role within an organization or in the community. Learners may have had previous leadership experience either in health research or in other areas of their life (e.g., member of a Board of Directors), however, this was not required. To be considered for the course, researchers and family members were required to complete an application form which included a variety of questions for our team to determine their suitability for the course including their plans to champion family engagement in research, practice, and policy; and the qualities and skills they hoped to gain through the course. Learners did not have to participate in the research study to take the course. The learners were FER Course graduates who were recruited through social media channels, the FER newsletter, and word of mouth. This study received ethics approval by the Hamilton Integrated Research Ethics Board, #15188.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e2.3. Data Collection\u003c/h2\u003e \u003cp\u003eQualitative data were collected through focus groups and semi-structured interviews. Data collection spanned two weeks after the second cohort and two weeks after the third cohort. The interviews and focus groups ranged from 30 minutes to one hour and were conducted through Zoom Videos Communications. The audio files were transcribed by the Zoom Otter AI system, and all transcripts were manually reviewed and cleaned by a research assistant.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e2.4. Data Analysis\u003c/h2\u003e \u003cp\u003eThematic analysis was used to generate codes and themes from the data. Following Braun and Clarke\u0026rsquo;s guidelines for thematic analysis (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e), initial familiarization of the data was conducted by two authors (AKS and SA) by reading the transcripts. Using an inductive approach, AKS and SA reviewed and coded excerpts of text from the transcripts in separate Excel files. The transcripts were coded verbatim to ensure fidelity to learners\u0026rsquo; language and perspectives. AKS and SA compared and discussed the excerpts and corresponding codes from the first two transcripts. The third and fourth transcripts were coded independently by AKS and SA, who then met to discuss and further define new emerging codes. The preliminary codes and themes were reviewed by SM and then discussed as a group over several meetings between AKS, SA, SM and AC, to develop a flexible framework of codes and emerging set of themes. The analysis of the final six transcripts was divided between AKS and SA. Regular weekly meetings were held to discuss, revise, and add or combine codes that were consolidated into final themes.\u003c/p\u003e \u003cp\u003eIt is important to acknowledge the roles of the co-authors involved in data analysis. AKS and SA, serving as research assistants, had little or no involvement with the development and delivery of the Leadership Academy. Being removed from the Leadership Academy may reduce confirmation bias in interpreting the results (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). In contrast, co-authors, SM and AC, were co-developers and instructors of the Leadership Academy. Their involvement in the analysis was peripheral, reviewing, and providing feedback on the coding framework. This approach allowed for contextual insights and oversight, while minimizing potential bias.\u003c/p\u003e \u003c/div\u003e"},{"header":"3. Results","content":"\u003cp\u003eOf the 21 learners enrolled in the second and third cohorts of the Leadership Academy, 10 participated in this study, including six family members and four researchers. All learners were female, and the majority (n\u0026thinsp;=\u0026thinsp;8) of whom were in Ontario, Canada. The demographic characteristics of these 10 learners are reported in Table\u0026nbsp;1. Learners had a wide range of prior experiences related to family engagement leadership. At the time of the study, some learners held leadership roles in organizations or were significantly involved at project levels. Others were actively seeking career opportunities in family engagement.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Taba\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTable\u0026nbsp;1.\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eLearner Role\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eN\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eFamily member\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e6\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eParent\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eSibling\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eResearcher\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e4\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003ePhD Student\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003ePost-Doctoral Fellow\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eResearch Coordinator\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eMid-career Investigator\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003e3.1. Perceptions and Satisfaction with the Course\u003c/h2\u003e \u003cp\u003eLearners shared their perceptions and satisfaction with the Leadership Academy. Three themes emerged from the data with respect to the qualities of the Leadership Academy that contributed to their satisfaction. These themes included: (i) diverse means of learning; (ii) sense of community; and (iii) positive and supportive learning environment. In this section, we elaborate on these themes and how they contributed to learners\u0026rsquo; satisfaction with the Leadership Academy, as well as suggestions to improve the course.\u003c/p\u003e \u003cdiv id=\"Sec9\" class=\"Section3\"\u003e \u003ch2\u003e3.1.1. Diverse Means of Learning\u003c/h2\u003e \u003cp\u003eThe Leadership Academy includes diverse means to learn and apply the course content. These include access to educational materials (readings, videos, tools), weekly synchronous sessions (involving small group discussions and guest speakers), the development of a personal Leadership Learning Plan through self-reflection and tailored mentorship, and a 3-minute elevator pitch presentation. Overall, learners were satisfied with the multiple means of learning: \u0026ldquo;\u003cem\u003eI really like the format... We had readings prior to each class, as well as then having guest speakers come in as panelists and in between weaving in the opportunities for us to work in small groups to refine our leadership plan.\u0026rdquo;\u003c/em\u003e These diverse means of learning course content are described in greater detail in the sections below.\u003c/p\u003e \u003cp\u003e \u003cb\u003eSmall Group Learning Through Synchronous Sessions\u003c/b\u003e. While there are core educational materials, learners emphasized the usefulness of small group learning that occurred during synchronous sessions: \u0026ldquo;\u003cem\u003eThere were so many amazing lessons I learned through the individuals in our class, as well as the material.\u0026rdquo;\u003c/em\u003e Another parent highlighted how they unexpectedly learned from their peers: \"\u003cem\u003ewe all bring something and let's really learn from each other. So, I wasn't expecting that I was going to learn so much from my classmates and grow together.\u0026rdquo;\u003c/em\u003e In this way, learners gained knowledge from the lived and professional experiences of peers and course mentors, which was described as a \u003cem\u003e\u0026ldquo;special and unique\u0026rdquo;\u003c/em\u003e aspect of the course. Peer learning was done not only through sharing experiences but also through modelling skills during synchronous sessions, such as authenticity, as described by one parent: \u003cem\u003e\u0026ldquo;the soft skills you're not, you can't teach them. You see [the mentors], like no one said be authentic, but that's what I took away because [the mentors] are authentic... Like, you model what you see when you're in a learning environment as a learner and not a teacher\u003c/em\u003e.\u0026rdquo;\u003c/p\u003e \u003cp\u003eTo improve the course, one parent suggested \u0026lsquo;rotating\u0026rsquo; learners that composed the small groups to help develop relationships with more peers. This is because they felt they: \u0026ldquo;\u003cem\u003eonly got to really get that discussion with half of the group...perhaps there could have been [other] relationships that I could have developed.\u003c/em\u003e\u0026rdquo; Similarly, researchers suggested that having more time with other learners would have created more learning opportunities from other researchers about similar experiences and challenges they face.\u003c/p\u003e \u003cp\u003e \u003cb\u003eLeadership Learning Plan and Tailored Mentorship\u003c/b\u003e. The Leadership Learning Plan is a self-directed activity that each learner completes at the beginning of the Leadership Academy. The process of developing and refining a Leadership Learning Plan through personal reflections and tailored mentorship served as a means of identifying leadership goals. The Leadership Learning Plan helps learners identify their strengths and areas for growth, as well as develop a Leadership Learning Plan with goals aligned with one or two of the five core competencies presented in the course (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Through this activity, learners \u0026ldquo;\u003cem\u003ediscovered\u003c/em\u003e\u0026rdquo; skills and abilities that they felt they already possessed. However, going through the exercise helped them explore how they could build on their skills. For example, a parent explained how they \u0026ldquo;\u003cem\u003erealized wait a minute, I am an entrepreneur because every time I see an opportunity, I take it. I am always on the lookout for those opportunities, and like. I'm always doing the elevator pitch whether I realize I am or not\u003c/em\u003e.\u0026rdquo; Course mentors provided feedback on the Leadership Learning Plan and learners were given the opportunity for tailored small group mentorship during three of the ten weeks in the course. The tailored mentorship also built confidence in leaders\u0026rsquo; abilities, with a parent reporting that they \u003cem\u003e\u0026ldquo;don't think I would feel confident without that mentorship\u0026hellip; it was integral.\"\u003c/em\u003e A post-doctoral fellow suggested that the Leadership Academy offer more one-on-one opportunities with the course mentors as a form of on-going mentorship throughout the course.\u003c/p\u003e \u003cp\u003e \u003cb\u003eElevator Pitch.\u003c/b\u003e A 3-minute elevator pitch is presented by each learner in the second last week of the course. The pitch presentation has been described by learners as both \u0026ldquo;\u003cem\u003euseful\u0026rdquo;\u003c/em\u003e and \u003cem\u003e\u0026ldquo;challenging.\u0026rdquo;\u003c/em\u003e For example, a post-doctoral fellow found it helpful to \u0026ldquo;\u003cem\u003emarket yourself in a way that you\u0026rsquo;re bringing something to their company or organization...if you\u0026rsquo;re pitching for someone to hire you for a position.\u003c/em\u003e\u0026rdquo; While the pitch was described as useful to develop these skills and opportunities, a parent suggested that there be \u0026ldquo;\u003cem\u003edifferent types of pitches you know like one is more relational.\u0026rdquo;\u003c/em\u003e Learners suggested that there be more time to practice and receive feedback on the pitch and to receive examples from course mentors.\u003c/p\u003e \u003cp\u003eThe elevator pitch was also described as a means of building self-confidence. However, one parent noted how the confidence they felt they had gained was not sustained two weeks later when they participated in the interview: \u0026ldquo;\u003cem\u003eTwo days after the pitch, I would have said, I feel so confident to go forward and to really focus on doing this\u0026hellip; now I think there's been a little bit of time, and I\u0026rsquo;m feeling almost a little more insecure, which is maybe why I'm asking for more check-ins.\u0026rdquo;\u003c/em\u003e This parent\u0026rsquo;s reflection is a testament to the on-going support that learners indicated would be helpful to progress in family engagement leadership after the course.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section3\"\u003e \u003ch2\u003e3.1.2. Sense of Community\u003c/h2\u003e \u003cp\u003eLearners described the sense of community that the Leadership Academy fostered among peers and the course mentors: \u0026ldquo;\u003cem\u003eIt does give you that sense of community, on this idea that we're all kind of on the same page.\u0026rdquo; The small group learning allowed learners to form meaningful personal connections and\u003c/em\u003e develop relationships that contributed to the sense of community. A parent explained that: \u0026ldquo;\u003cem\u003eyou start to really care about your classmates, as well, and the journey that they're taking, and even now I can't wait for an update\u0026hellip; we're really there for each other.\u0026rdquo;\u003c/em\u003e Researchers also shared that sentiment, with a mid-career investigator explaining how they \u0026ldquo;\u003cem\u003ereally appreciated the new relationships that were created.\u003c/em\u003e\u0026rdquo; This relational aspect of the course was described as a highlight. One parent shared that one of the \u0026ldquo;\u003cem\u003ehighlights was getting to know a lot of different people... So, I think I really appreciated the relational element of being in learning together.\u003c/em\u003e\" Overall, a sense of community was consistently described as a positive experience by both family members and researchers and a reason for satisfaction with the course, as expressed by a post-doctoral fellow: \u003cem\u003e\u0026ldquo;I think it was not only just the content that brought satisfaction, but I think also the community that we became a part of.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section3\"\u003e \u003ch2\u003e3.1.3. Positive and Supportive Learning Environment\u003c/h2\u003e \u003cp\u003eThe Leadership Academy was described as a \u0026ldquo;\u003cem\u003esafe\u003c/em\u003e\u0026rdquo; space for co-learning among a diverse group of family members and researchers. This environment was shaped by its members, who were described as \u0026ldquo;\u003cem\u003eempathetic\u003c/em\u003e\u0026rdquo; and \u0026ldquo;\u003cem\u003ecompassionate\u003c/em\u003e.\u0026rdquo; Another parent described the environment as being \u0026ldquo;v\u003cem\u003eery supportive and encouraging\u003c/em\u003e.\u0026rdquo; The course mentors were described as \u0026ldquo;accommodating\u0026rdquo;, contributing to a supportive learning environment. For example, a PhD student described the course mentors as \u0026ldquo;\u003cem\u003eopen-minded\u003c/em\u003e\u0026rdquo; and able to accommodate all learners with various levels of leadership experience. Learners also felt comfortable sharing personal stories and vulnerabilities, free of judgment, with one parent stating: \u0026ldquo;\u003cem\u003ethere\u0026rsquo;s no judgment here, which is wonderful\u003c/em\u003e.\u0026rdquo; This parent explained that because the course was designed to create a supportive and inclusive space, people felt comfortable \u0026ldquo;saying anything\u0026rdquo; even when discussing sensitive topics. Not only was the environment conducive to sharing personal experiences and feelings, but it was also a \u0026ldquo;s\u003cem\u003epace to be open and honest about questions,\u0026rdquo;\u003c/em\u003e as described by another parent.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003e3.2. Applying Course Learnings to Leadership Roles\u003c/h2\u003e \u003cp\u003eThe Leadership Academy influenced how learners were (i) applying what they learned to their current roles and (ii) planning to use learnings to pursue future positions in family engagement. Learners also expressed a desire to stay connected with other leaders.\u003c/p\u003e \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e \u003ch2\u003e3.2.1. Applying learnings to current roles\u003c/h2\u003e \u003cp\u003eLearners who already held a leadership role expressed how they were already integrating the insights from the Leadership Academy into their current work. For example, a sibling discussed how the course provided them with the \u0026ldquo;\u003cem\u003espace to reflect\u0026rdquo;\u003c/em\u003e on the state of family engagement within their organization. They reflected on what was going well, and how they could \u0026ldquo;\u003cem\u003econtinue to push engagement\u0026rdquo;\u003c/em\u003e and implement \u003cem\u003e\u0026ldquo;best practices.\u0026rdquo;\u003c/em\u003e This learner who already held a position of influence at an organizational level, was able to make informed recommendations for improving family engagement. Other learners described how they applied learnings to research projects. For example, a post-doctoral fellow described how the soft skills and the process of developing the pitch contributed to a grant they were preparing while taking the course: \u003cem\u003e\"I think what also happened simultaneously at the same time was I submitted a grant to the Canadian Institutes of Health Research\u0026hellip; and I don't think I would have been able to do it without having taken [the Leadership Academy].\u003c/em\u003e\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section3\"\u003e \u003ch2\u003e3.2.2. Planning for future leadership roles and career development\u003c/h2\u003e \u003cp\u003eSome learners explained how they planned to implement their Leadership Learning Plan to support the attainment of leadership positions in family engagement. For example, a parent explained that they were \u0026ldquo;\u003cem\u003etrying to pursue opportunities and finding those ways to be that leader that I want to be.\u0026rdquo;\u003c/em\u003e One post-doctoral fellow had begun to use their Leadership Learning Plan immediately after completing the course to develop their career in academia: \u003cem\u003e\u0026ldquo;I actually went out afterwards to implement and to use that [Leadership Learning Plan] as a leader and championing for a cause or a position that I was really passionate about in family engagement in research.\"\u003c/em\u003e For learners seeking leadership positions in family engagement, some discussed challenges navigating next steps to find and access opportunities. For example, a parent described that: \u0026ldquo;\u003cem\u003eit's sort of like well what's next? So, now that you've taken this course\u003c/em\u003e, \u003cb\u003eI didn't feel like I'm prepared to go out and lead\u003c/b\u003e, \u003cem\u003ebut like if you're saying I'm taking this leadership course, then ideally is the intention to be \u0026lsquo;hey now go forth and be a leader?\u0026rsquo; So, I didn't feel like I could do that, and maybe it's because the environment\u003c/em\u003e \u003cb\u003ethere is nowhere for me to go forth and be a leader\u003c/b\u003e.\u003cb\u003e\u0026rdquo; Similar challenges were expressed by other\u003c/b\u003e learners, \u003cb\u003ewho indicated a lack of opportunities to lead in FER.\u003c/b\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section3\"\u003e \u003ch2\u003e3.2.3. Staying connected with other leaders\u003c/h2\u003e \u003cp\u003eLearners consistently expressed a strong desire to build and maintain connections after the Leadership Academy: \u0026ldquo;\u003cem\u003eI really wanted a way for us to stay connected, that's just something that I feel strongly about. That you know you make these really amazing connections, and then you know you kind of fizzle\u003c/em\u003e.\u0026rdquo; Some felt that that a community was already \u0026ldquo;\u003cem\u003ebeing built\u0026rdquo;\u003c/em\u003e through the Leadership Academy and hoped it could be sustained: \u0026ldquo;\u003cem\u003enow stay connected with the community, and I hope this community is something that we can continue to build off from.\u0026rdquo;\u003c/em\u003e In addition to expressing this desire for a network of leaders, learners provided concrete suggestions for fostering a lasting community. For example, researchers recommended holding annual or bi-annual online meetings or offering optional drop-in spaces where Leadership Academy graduates could share their progress and maintain the connections formed during the course. Establishing a community of practice could not only serve as a means of staying connected but also offer opportunities to learn from each other\u0026rsquo;s experiences. For example, a parent explained how a sustained network to \u003cem\u003e\u0026ldquo;check-in on everyone\u0026rdquo;\u003c/em\u003e would allow people to share success stories and the challenges faced while implementing their Leadership Learning Plans.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"4. Discussion","content":"\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003e4.1. Importance of Synchronous Sessions, Small Group Learning, and Mentorship\u003c/h2\u003e \u003cp\u003eThe weekly synchronous sessions are a fundamental component of the Leadership Academy because they created an environment for learners to engage in real-time, small group learning with peers and mentors. These sessions began with an informal conversation and check-in to get to know learners and establish trusting relationships. We wanted this to be a space for learners to be comfortable enough with their mentors and peers that they could then step outside of their comfort zone and learn together \u0026ndash; like the Zone of Proximal Development in Vygotsky\u0026rsquo;s Sociocultural Development Theory (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Creating a \u0026ldquo;brave space\u0026rdquo; (see Palfrey, 2017, p. 21)(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) for \u0026lsquo;comfortable discomfort\u0026rsquo;, or what Taylor and Manning-Ouellette call the \u0026ldquo;growth zone\u0026rdquo;(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) was essential in developing and delivering the Leadership Academy so that learners with diverse experiences and knowledge could share problems and learn together.\u003c/p\u003e \u003cp\u003ePeer learning in leadership training can foster a greater sense of accountability, which is particularly important for self-directed and unprescribed approaches typical of leadership development courses (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). For example, the Bridging Leaders Program and National Health Fellows from McMaster University incorporate peer mentoring and consulting sessions for individual leadership development in the healthcare sector. Peer learning through the small group synchronous sessions was perceived as a strength of the Leadership Academy. This finding is a testament to the importance of this small group synchronous format for mentoring and building capacity in the next generation of family engagement leaders.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003e4.2. Opportunities for Family Engagement Leadership Graduates\u003c/h2\u003e \u003cp\u003eThe Leadership Academy is designed to provide opportunities for connection, networking, and mentorship amongst current and emerging champions and leaders in family engagement. The intention when creating the Leadership Academy was for learners to plan for and create their own opportunities for family engagement leadership (e.g., through the Leadership Learn Plan and pitch presentation) (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). However, a challenge faced by graduates was the limited opportunities available to apply their Leadership Learning Plans and find champion and leadership positions at organization and community levels. These experiences reflect a broader challenge that organizations often lack sustainable infrastructure (e.g., training, appropriate funding, governance structures, and institutional models) to support engagement (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). We are aware of a few organizations in Canada that are working to embed engagement support into their infrastructure. For example, the Ottawa Model (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) was developed to guide meaningful engagement at an institutional level. Previous literature recommends that organizations shift towards a culture of engagement, which is a major facilitator in building sustainable roles for families \u0026ndash; including in governance at a systems level (\u003cspan additionalcitationids=\"CR19\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eRecognizing this challenge, a next step for the Family Engagement in Research Program is to work in partnership with organizations and networks to create pathways for graduates to apply their leadership training to champion meaningful family engagement at organizational and community levels. An example of how this has already been done is the pathway that was created for FER Course graduates to partner on a national Canadian Institutes of Health Research team grant opportunity to form a national pediatric rare disease clinical trials network in Canada, which was successfully funded and is now called RareKids-CAN Network. At the time of the application, leaders of the Family Engagement in Research Program matched 12 FER Course/Leadership Academy graduates to the sub-platforms of the network that aligned with their skills, expertise, and research areas of interest. All 12 graduates were co-investigators on the grant application and continue to be involved and champion family engagement across the network.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003e4.3. Building a Network and Community of Practice\u003c/h2\u003e \u003cp\u003eFindings from this study highlight the need for a sustained network to support on-going leadership development through peer mentorship between FER Champions beyond the Leadership Academy. Building a sustained network is a priority of the Family Engagement in Research Program that aligns with our goal to provide FER Champions with ongoing training, networking, mentorship, and collaboration opportunities. There are existing models for peer mentorship in this field, such as the PiPER Community of Practice (CoP), the KBHN Implementation Science CoP, and Collaboration Hub through the University of Toronto. A similar approach through a CoP for FER Champions could support our goal to create a strong network of family engagement leaders at organization and community levels. CoPs can also serve as essential infrastructure to influence system level change through the exchange of knowledge, experience, and resources by champions (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). The development of a CoP composed of Leadership Academy Graduates could help advance coordinated efforts to build organizational capacity, including creating and sustaining roles for family leaders.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003e4.4. Strengths, and Limitations\u003c/h2\u003e \u003cp\u003eA strength of this study was the qualitative methodology that involved 10 in-depth interviews. Understanding learners\u0026rsquo; perceptions of the course and the qualities of the course that supported their learning would not have been captured to this level of depth through quantitative measures. Three parent leaders (DT, CP, RM) were co-investigators in this project and co-led the development and delivery of the Leadership Academy. While we did not formally evaluate their involvement, we scheduled regular meetings to critically reflect on the progress of the project and embedded opportunities throughout to discuss experiences and involvement in the project.\u003c/p\u003e \u003cp\u003eA limitation is that while from the findings we identified researchers\u0026rsquo; and family members\u0026rsquo; intentions to apply learnings, without a longitudinal component to the study, it is unknown how their leadership trajectories may be influenced by the Leadership Academy. This could be evaluated in a follow-up study looking at the trajectories over time. Furthermore, we did not ask about the specific content areas that were covered in the course, which may limit modifications we can make to improve the course. Finally, the cohorts evaluated in this study were delivered on different learning platforms, which does introduce some inconsistencies.\u003c/p\u003e \u003c/div\u003e"},{"header":"5. Conclusion","content":"\u003cp\u003eThis qualitative study provides early evidence that the Family Engagement in Leadership Academy Course is a positive learning opportunity and supports learners in building self-confidence and abilities to champion and lead in family engagement in a quickly evolving field. As organizations begin to prioritize meaningful family engagement it is important that people are hired who have the knowledge, skills, and expertise to lead these efforts. Furthermore, our findings highlight the importance of building a community for family engagement champions and leaders, so that both family members and researchers do not work in silos but instead work together to support the mobilization and implementation of meaningful family engagement practices.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCommunity of Practice (CoP)\u003c/p\u003e \u003cp\u003eFamily engagement in research (FER)\u003c/p\u003e \u003cp\u003ePatient-oriented research (POR)\u003c/p\u003e \u003cp\u003ePeople with lived and living experience (PWLLE)\u003c/p\u003e \u003cp\u003eNeurodevelopmental disabilities (NDD)\u003c/p\u003e"},{"header":"Declarations","content":" \u003cp\u003e \u003cb\u003eEthics approval and consent to participate\u003c/b\u003e \u003c/p\u003e \u003cp\u003eThis study received ethics approval by the Hamilton Integrated Research Ethics Board, #15188. Informed consent was obtained for researchers and family members to participate in the study.\u003c/p\u003e \u003cp\u003e\u003cb\u003eConsent for publication\u003c/b\u003e\u003c/p\u003e \u003cp\u003eNot applicable.\u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eKids Brain Health Network funded the development and evaluation of the Family Engagement in Research Leadership Academy. AC is funded by a Canadian Institutes of Health Research (CIHR) Patient-Oriented Research Transition to Leadership Stream (Phase 1 \u0026amp; Phase 2) Award (Funding Reference number: 170668).\u003c/p\u003e\u003ch2\u003eAvailability of data and materials\u003c/h2\u003e \u003cp\u003eThe datasets generated and analyzed during the current study are not publicly available because only four co-authors (AKS, SA, SM, and AC) were approved by the Hamilton Integrated Research Ethics Board to access to the qualitative data.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eCIHR. Strategy for Patient-Oriented Research [Internet] (2023) [cited 2023 Apr 1]. 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Res Involv Engagem 2:1\u0026ndash;12\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJinks C, Carter P, Rhodes C, Beech R, Dziedzic K, Hughes R et al (2013) Sustaining patient and public involvement in research: a case study of a research centre. J Care Serv Manag 7(4):146\u0026ndash;154\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDworetzky B, Hoover CG, Walker DK (2023) Family engagement at the systems level: a framework for action. Matern Child Health J 27(6):969\u0026ndash;977\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMicsinszki S, Thomson D, Putterman C, Martens R, Soper AK, McCauley D et al (n.d.) Developing Leadership Capacity and Competence in Family Engagement in Research. [Manuscript submitted for publication]\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eClarke V, Braun V, Hayfield N (2015) Thematic analysis. 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J Leadersh Stud 16(3):33\u0026ndash;37\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAssociation for Talent Development (2021) Why Peer Learning Is Crucial for Leadership Development\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDworetzky B, Hoover CG, Walker DK (2023) Family engagement at the systems level: a framework for action. Matern Child Health J 27(6):969\u0026ndash;977\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eVanderhout S, Nicholls S, Monfaredi Z, Hampel C, Ashdown L, Bilodeau M et al (2022) Facilitating and supporting the engagement of patients, families and caregivers in research: the Ottawa model for patient engagement in research. Res Involv Engagem 8(1):25\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBuchanan F, Peasgood A, Easton M, Haas K, Narayanan U (2022) The Research Family Advisory Committee: the patient and family view of implementing a research-focused patient engagement strategy. 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Learn Health Syst 8(3):e10412\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"McMaster University","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Family Engagement in Research, Patient-Oriented Research, Leadership Academy, Child Health Research, Neurodevelopmental Disability, Online Education, Family Members, Researchers, Qualitative Research","lastPublishedDoi":"10.21203/rs.3.rs-8583117/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8583117/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003eThe Family Engagement in Research Leadership Academy is a 10-week (30 hours), online McMaster University Certificate of Completion for researchers and family members championing family engagement in neurodevelopmental and child health research. The Leadership Academy consists of weekly 2-hour online synchronous sessions, small group mentorship, an individual Leadership Learning Plan, and a 3-minute ‘pitch’ presentation about a proposed project or personal vision for family engagement leadership. Throughout the Leadership Academy, learners build knowledge in five core competencies of family engagement leadership (self-awareness, communication, empathy and compassion, advocacy, and entrepreneurship) and the skills to apply these competencies at organizational and community levels. The primary aim of this qualitative study was to identify learners’ perceptions of the Leadership Academy, and to explore how they were applying family engagement leadership at organizational or community levels.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eTen out of 21 graduates of the second and third Leadership Academy cohorts (2022-2023) agreed to participate in this study. We conducted semi-structured interviews after completing each course cohort. We analyzed qualitative data inductively using thematic analysis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eThree themes generated related to learners’ course satisfaction: diverse means of learning; sense of community; and positive and supportive learning environment. Learners reported that they were planning to or were actively applying course learnings to their leadership roles and career development. Learners indicated a desire to stay connected and continue to collaborate after the course.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions: \u003c/strong\u003eThe Leadership Academy is a learning experience that has potential to build capacity for family engagement in neurodevelopmental and child health research at organization and community levels by training champions in family engagement leadership core competencies and practices and creating a network of leaders.\u003c/p\u003e","manuscriptTitle":"Building capacity for leadership in family engagement in neurodevelopmental and child health research: A qualitative evaluation of the Family Engagement in Research Leadership Academy","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-01-13 10:45:36","doi":"10.21203/rs.3.rs-8583117/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"06ce92f8-b2ed-47ac-ad1f-86d6dd051f84","owner":[],"postedDate":"January 13th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":61006152,"name":"Pediatrics"}],"tags":[],"updatedAt":"2026-01-13T10:45:36+00:00","versionOfRecord":[],"versionCreatedAt":"2026-01-13 10:45:36","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8583117","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8583117","identity":"rs-8583117","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}