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Background Poorly supported transitions from pediatric to adult healthcare can lead to negative health outcomes for youth and their families. To better understand the current landscape of healthcare transition care across Canada, the Canadian Health Hub in Transition (the “Transition Hub”, established in 2019) identified a need to: (1) describe programs and services supporting the transition from pediatric to adult healthcare across Canada; and (2) identify strengths, barriers, and gaps affecting the provision of transition services. Methods Our project included two iterative steps: a national survey followed by a qualitative descriptive study. Service providers were recruited from the Transition Hub and invited to complete the survey and participate in the qualitative study. The survey was used to collect program information (e.g., setting, clinical population, program components), and semi-structured interviews were used to explore providers’ perspectives on strengths, barriers, and gaps in transition services. Qualitative data were analyzed using the Framework Method. Results Fifty-one surveys were completed, describing 48 programs (22 pediatric, 19 bridging, and 7 adult) across 9 provinces. Almost half of the surveyed programs were in Ontario (44%) and most programs were based in hospital (65%) and outpatient settings (73%). There was wide variation in the ages served, with most programs focused on specific diagnostic groups. Qualitative findings from 23 interviews with service providers were organized into five topics: (1) measuring transition success; (2) program strengths; (3) barriers and gaps; (4) strategies for improvement; and (5) drivers for change. Conclusions While national transition guidelines exist in Canada, there is wide variation in the way young people and their families are supported. A national strategy, backed by local leadership, is essential for instigating system change toward sustainable and universally accessible support for healthcare transition in Canada.

Background The Family Engagement in Research (FER) Course launched in 2018 for researchers and family members to co-learn the principles and practice of engagement in neurodevelopmental disability and child health research. The first six cohorts of the FER Course (2018–2021) were part of a pre-post evaluation to assess learners’ perceptions and satisfaction of the FER Course, and the impact on their perceived knowledge, abilities, attitudes, and self-confidence in FER. This paper reports on the findings from this pre-post study. Methods Sixty-nine self-selected researchers and family members enrolled in the course completed pre-and post-evaluations; satisfaction was evaluated after the course only ( n  = 96). Data collection involved surveys with 10-point Likert Scale questions about experiences of the course, perceived knowledge, abilities, attitudes towards, and self-confidence in family engagement in research, and overall satisfaction. We conducted Wilcoxon rank sum to compare differences between researchers and family members’ responses about self-confidence to engage, with the Wilcoxon signed rank tests used to evaluate change in outcomes from before to after the course. Open-ended survey responses were analyzed descriptively. Results There were statistically significant increases in survey respondents’ perceived knowledge, abilities, and self-confidence to engage in research. Positive attitudes towards FER were rated highly at baseline and post-test, with no significant change. Respondents reported high levels of satisfaction with the FER Course. Conclusions The FER Course meets the need for training both family members and researchers, so that they are equipped with the perceived knowledge, abilities, and confidence to collaborate in neurodevelopmental disability and child health research. Plain English summary The Family Engagement in Research (FER) Course is for researchers and family members. Together, they learn how to partner in neurodevelopmental disability and child health research. To make sure the course is helping learners, a study was done from 2018 to 2021. The study included 69 learners (researchers and family members) from six course deliveries. Learners filled out surveys before and after the course. In the surveys, they shared their thoughts on the course itself. They also reported their perceived knowledge, abilities, attitudes, and confidence in family engagement in research. The survey responses were analyzed using statistical tests to see if there were changes from before to after the course and differences between researchers and family members. The open-ended survey questions gave us a better understanding of satisfaction with the course. Findings showed an increase in perceived knowledge, abilities, and confidence in engaging in research. Positive attitudes toward family engagement in research were high and did not change. Learners were satisfied with the course. Overall, the FER Course helps researchers and family members learn how to meaningfully work together in neurodevelopmental disability and child health research.

Background Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful. While patient-oriented research (POR) is increasingly practiced, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Our primary objective was to explore the training needs of youth (ages 18–25) with NDD to enhance their knowledge, confidence, and skills as research partners. Our secondary objective was to identify the benefits and challenges of engaging youth with NDD in a POR approach. Methods Our team of four youth and one parent with lived experience [Youth Engagement in Research (YER) partners] and six researchers engaged in POR to investigate the primary objective via two phases: (1) individual interviews with youth living with NDD and (2) a two-day virtual symposium with focus groups with youth and researchers. Collaborative qualitative content analysis was employed to synthesize the data. Our secondary objective was assessed by asking our YER partners to complete the Public and Patient Engagement Evaluation Tool (PPEET) survey and participate in reflective discussions. Results Phase 1 participants (n = 7) identified various barriers and facilitators to their engagement in research and offered suggestions to meet their needs through minimizing barriers and integrating facilitators, which would subsequently enhance their knowledge, confidence, and skills as research partners. Informed by phase 1, phase 2 participants (n = 17) prioritized the following POR training needs: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. For delivery methods, participants stated the importance of youth representation, using Universal Design for Learning, and co-learning between youth and researchers. Based on the PPEET data and subsequent discussions, YER partners agreed that they were able to express views freely, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, ensuring multiple methods for engagement, and working under short timelines. Conclusion This study identified important training needs for youth with NDD and for researchers to engage in meaningful POR, which can subsequently inform the co-production of accessible training opportunities with and for youth. Plain English summary Partnerships between researchers and youth, known as patient-oriented research (POR), are needed to make sure research is meaningful to youth. Our main goal was to explore the training needs of youth (ages 18-25) with neurodevelopmental disabilities (NDD) to enhance their knowledge, confidence, and skills as research partners. To find out, our team of four youth and one parent with lived experience (YER partners) and six researchers completed this project in two parts: 1) interviews with youth and 2) a two-day virtual workshop with youth and researchers. Data from the two parts were reviewed to answer our question. We learned from Part 1 that the needs of participants can be met by providing support and reducing barriers in POR. From Part 2, the top three important topics in partnerships were: researcher-youth communication, research roles and responsibilities, and finding partnership opportunities. Participants in the workshop emphasized having different youth represented, using a framework that allows learning for everyone, and co-learning between youth and researchers in the creation of learning materials. Our second goal was to understand the benefits and challenges of our partnership. To assess, YER partners completed a survey and reflected about their experiences. YER partners agreed on being able to express views, feel that their views were heard, and that their participation made a meaningful difference. Challenges included scheduling difficulties, providing multiple ways to partner, and working under short timelines. Overall, the study described important POR needs for youth and researchers, which can inform future training opportunities.

Background Since 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course. Main text From its inception, the FER Course has been delivered in partnership with family leaders and researchers. The FER Course is innovative in its co-learning and community building approach. The course is designed to bring family partners and researchers together to co-learn and connect, and to develop competency and confidence in both the theory and practice of family engagement in research. Coursework involves four live online group discussions, individual review of course materials, weekly group activities, and a final group project and presentation. Upon completion of the FER Course, graduates earn a McMaster University micro-credential. Conclusions To meet a need in building capacity in POR, a novel course in the field of neurodevelopmental disability and child health has been co-created and delivered. Over six years (2018–2023), the FER Course has trained more than 430 researchers and family partners across 20 countries. A unique outcome of the FER Course is that graduates expressed the wish to stay connected and continue to collaborate well beyond the course in turn creating an international FER Community Network that continues to evolve based on need. The FER Course is creating a growing international community of researchers, trainees, self-advocates, and family partners who are championing the implementation of meaningful engagement in neurodevelopmental disability and child health research and beyond. The course is internationally recognized with an established record of building capacity in POR. Its uptake, sustainability, and scalability to date has illustrated that training programs like the FER Course are necessary for building capacity and leadership in family engagement in research. Plain English summary In the last two decades there has been a clear commitment in Canada (and the world) to include patients and their families in health research—a process called patient-oriented research or as we refer to it—family engagement in research. In 2011, the Canadian Institutes of Health Research introduced the Strategy for Patient-Oriented Research to make this happen. To support POR in neurodevelopmental disability and child health, CanChild Centre for Childhood Disability Research teamed up with Kids Brain Health Network and McMaster Continuing Education. Together, a team of family caregivers and researchers co-created the Family Engagement in Research (FER) Course, a 10-week online course. The purpose of the FER Course is for researchers and family partners to learn about family engagement principles and how to use them in research. The course covers core areas in family engagement including how to find each other, how families and researchers can work together, and ways to overcome common challenges in research partnerships. The course uses online group sessions, discussion boards, and various resources such as research papers and videos. Through a group project, family partners and researchers collaborate to create a resource on family engagement. Completing the FER Course researchers and family members earn a McMaster University micro-credential and become part of a growing global community of FER Course graduates. Over six years (2018–2023), the FER Course has trained more than 430 researchers and family partners from 20 countries. The course has strengthened capacity in family engagement and is building a worldwide community of researchers, trainees, self-advocates, and family partners who are dedicated to improving neurodevelopmental disability and child health research through meaningful engagement.