Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities.

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.

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.

Exploring 10 years of dissemination of the F-words for Child Development: A multifaceted case study.

BACKGROUND: There is growing interest in exploring how to move research findings into practice. Since 2014, a team of families and researchers has been working to promote and study the dissemination of the "F-words for Child Development" (Function, Family, Fitness, Fun, Friends, and Future). This case study describes our dissemination strategies and uses the Diffusion of Innovation theory to understand the factors contributing to the uptake of the F-words-a function-promoting, strengths-based, and family-centred innovation in child health and development. METHODS: Between November 2011 and November 2021, we collected data from multiple sources: our dissemination strategies, including affiliated documents/artefacts (e.g., videos and presentations) and evaluation data (e.g., surveys and Google/video analytics). We used a two-step analysis: (1) a chronological time series to describe the processes involved along with indicators of dissemination over time (e.g., increase knowledge and awareness); and (2) Diffusion of Innovation theory to explore the factors that contributed to the uptake of the F-words. RESULTS: Multifaceted dissemination strategies were essential to raise awareness and increase families' and service providers' knowledge of the F-words. These included three primary strategies: (i) development and distribution of educational materials; (ii) presentations at educational meetings; and (iii) educational outreach visits. Additional strategies, such as the use of mass media, collaboration with early adopters/champions, and the involvement of family members further supported dissemination efforts. Diffusion of Innovation factors (innovation characteristics, time, social systems, and communication channels) all contributed to the uptake of this innovation. CONCLUSIONS: Purposeful planned dissemination practice, to increase knowledge and awareness of an innovation, is an important step in the knowledge translation process. Over a period of 10 years, through the use of multiple dissemination strategies conducted in partnership with families and service providers, the F-words have spread globally. Diffusion of Innovation theory has served to help understand how and why the F-words are being shared and adopted around the world.

Knowledge translation strategies to support service providers' implementation of the "F-words in Childhood Disability".

PURPOSE: Service providers are adopting the "F-words" in practice as a strengths-based approach to childhood disability. This study aimed to gain insight into service providers' uses of the "F-words", associated barriers, and knowledge translation strategies needed to support implementation. METHODS: Service providers were invited to participate in an interview after completing an online survey on their clinical implementation of the "F-words". Content analysis provided insight into use of the "F-words" and perceived barriers; and to identify knowledge translation strategies to facilitate implementation. RESULTS: Twenty-one service providers from nine countries participated in interviews. Applications of the "F-words" included its use as a conceptual framework, directly in practice, and in teaching/training. Barriers included conflicting attitudes, insufficient funding, language, and misalignment with organizational/government priorities. To support the adoption of the "F-words", participants recommended knowledge translation strategies including local opinion leaders, linkage and exchange, educational outreach and meetings, and distribution of educational materials. CONCLUSIONS: Understanding uses, barriers to use, and knowledge translation strategies will inform future directions to move the "F-words" into practice. A critical step in bridging the research-to-practice gap and encouraging more widespread adoption requires collaboration with service providers to tailor knowledge translation strategies to fit the local context.Implications for RehabilitationService providers around the world are interested in the ICF-based "F-words" and are adopting them in clinical practice to support a holistic, strengths-based approach to childhood disability.While there is considerable uptake of the "F-words", service providers have experienced barriers including conflicting attitudes of families and colleagues, insufficient funding, lack of translations, and misalignment with organizational and government priorities.To further support implementation and overcome perceived barriers, service providers recommended using four knowledge translation strategies: (i) local opinion leaders; (ii) linkage and exchange; (iii) educational outreach/meetings; and (iv) the distribution of educational materials.Service providers and researchers must partner together to tailor knowledge translation strategies to the local context in order to address the needs and priorities of service providers' specific settings and bridge the gap between research evidence and practice.

Understanding the essential components and experiences of youth with autism spectrum disorders in peer mentorship programmes during the transition to adulthood: A qualitative meta-ethnography.

Youth with an autism spectrum disorder (ASD) often require additional supports during the period of transition to from high school to post-secondary education or career paths. Peer mentorship (PM) programmes create opportunities to support youth with ASD in identifying their personal, academic and career goals after graduating from high school; however, there is limited insight about the components of these programmes that are valued by both participants and peer mentors and that are perceived to contribute to the overall success of a programme in achieving their goals. Our objective was to identify, describe and synthesize the components of PM programmes valued by youth with ASD and their peer mentors, as well as to document their experiences in these transitional support services. A meta-ethnography was conducted to synthesize qualitative and mixed methods studies of PM programmes for youth with ASD. A systematic search of seven databases yielded 142 nonduplicate articles. Data analysis and synthesis involved (1) extraction of raw data; (2) extraction of study authors' interpretations, followed by inductive coding; (3) synthesis of key themes and (4) schematic diagram development to illustrate the relationship of themes. Ten studies of PM programmes from Canada (2), United States (4), Australia (3) and United Kingdom (1) were included. Extracted data reflected experiences of 131 mentees and 82 mentors. The essential programme components identified were (1) mentorship, (2) skill building, (3) peer group and (4) facilitating transition. PM characterized by clear communication and connection between mentors and mentees was valuable to the success of the programme. Peer mentors played an essential role to facilitate the positive experiences that mentees had with programme components, including interactions with peer groups. Successful PM programmes created a safe environment for mentees to practice skills and helped mentees gain confidence to expand their roles to take leadership in their learning.

Service Providers' Perspectives on Using the 'F-Words in Childhood Disability': An International Survey.

AIMS: The 'F-words in Childhood Disability' - operationalizing the International Classification of Functioning, Disability and Health Framework - have attracted great interest around the world. However, we have yet to learn how service providers (SPs) are using them. The aim of this study was to explore international SPs' attitudes toward and use of the 'F-words'. METHODS: A survey was administered, guided by the Theory of Planned Behavior, including Likert-scaled statements and an open-ended question. Ninety-one SPs working with children with impairments from 27 countries completed the survey. RESULTS: While 82 agreed the 'F-words' are good practice, only 60 are using the 'F-words'. Similarly, 52 SPs agreed that their colleagues approved of their use and 54 felt they were easy for families to use and understand. Respondents reported three main uses: (i) support of preexisting clinical approaches, (ii) direct integration into practice, and (iii) being taught in higher education. They also identified barriers to implementation (e.g., alternative clinical approaches and limited resources). CONCLUSIONS: Findings provide insights in how the 'F-words' are being used and the limitations thereof, which can inform future directions to support international implementation. With international SPs, we need to develop adapted dissemination tools to support uptake by individuals worldwide.

Exploring the international uptake of the "F-words in childhood disability": A citation analysis.

BACKGROUND: The "F-words in childhood disability" (function, family, fitness, fun, friends, and future) were introduced in a concept paper in 2012 entitled, "The F-words in childhood disability: I swear this is how we should think!". The "F-words" are grounded in, and aim to operationalize, the World Health Organization's (World Health Organization, 2001) International Classification of Functioning, Disability and Health (ICF) framework. A citation analysis was conducted to explore the extent of research uptake of the "F-words" concepts. METHODS: Three databases-Google Scholar, Wiley Online, and Web of Science-were searched from July 2012 to December 2018 for sources that cited the original F-words paper. Dates of publication and countries of first authors were extracted from all cited articles, and a taxonomy was developed to categorize the type of usage. RESULTS: The search yielded 157 sources from 26 countries, and the number of citations has continued to increase since the paper's publication. Sources were placed into three categories: cited/referenced (n = 109; i.e., the paper was simply cited), integrated/informed (n = 36; i.e., the F-words were stated within the text), and non-English (n = 12). Of the 36 integrated/informed sources, 34 (94.4%) applied the F-words to the ICF framework and five themes emerged with respect to the use of the F-words: (a) support of a holistic approach to childhood disability, (b) association of the F-words to physical activity and rehabilitation, (c) application and measurement of quality of life, (d) F-words research team-related papers, and (e) "other" category. CONCLUSION: This citation analysis shows that the F-words are mainly being used to operationalize the ICF, support a holistic approach to childhood disability, and inform physical activity and rehabilitation-based interventions. These perspectives will play an important role in informing the next steps with respect to moving the F-words into research and practice.