BackgroundThe “F-words in Childhood Disability” (Function, Family, Fitness, Fun, Friends, and Future) are an adaptation and an attempt to operationalize the World Health Organization’s (2001) International Classification of Functioning, Disability and Health (ICF) framework. Since the paper was published (November 2011), the “F-words” have attracted global attention (>12,000 downloads, January 2018). Internationally, people have adopted the “F-words” ideas, and many families and service providers have expressed a need for more information, tools, and resources on the “F-words”.ObjectiveThis paper reports on the development and pilot evaluation of a Web-based knowledge translation (KT) resource, the “F-words” Knowledge Hub that was created to inform people about the “F-words” and to provide action-oriented tools to support the use of the “F-words” in practice.MethodsAn integrated research team of families and researchers at CanChild Centre for Childhood Disability Research collaborated to develop, implement, and evaluate the Knowledge Hub. A pilot study design was chosen to assess the usability and utility of the Web-based hub before implementing a larger evaluation study. Data were collected using a brief anonymous Web-based survey that included both closed-ended and open-ended questions, with the closed-ended responses being based on a five-point Likert-type scale. We used descriptive statistics and a summary of key themes to report findings.ResultsFrom August to November 2017, the Knowledge Hub received >6,800 unique visitors. In 1 month (November 2017), 87 people completed the survey, of whom 63 completed the full survey and 24 completed 1 or 2 sections. The respondents included 42 clinicians and 30 family members or individuals with a disability. The majority of people visited the Knowledge Hub 1-5 times (n=63) and spent up to 45 minutes exploring (n=61) before providing feedback. Overall, 66 people provided information on the perceived usefulness of the Knowledge Hub, of which 92% (61/66) found the Knowledge Hub user-friendly and stated that they enjoyed exploring the hub, and a majority (n=52) reported that the Knowledge Hub would influence what they did when working with others. From the open-ended responses (n=48), the “F-words” videos (n=21) and the “F-words” tools (n=15) were rated as the best features on the Knowledge Hub.ConclusionsThe “F-words” Knowledge Hub is an evidence-informed Web-based KT resource that was useful for respondents, most of whom were seen as “early adopters” of the “F-words” concepts. Based on the findings, minor changes are to be made to improve the Knowledge Hub before completing a larger evaluation study on the impact at the family, clinician, and organizational levels with a wider group of users. Our hope is that the “F-words” Knowledge Hub will become a go-to resource for knowledge sharing and exchange for families and service providers.

By creating a short and captivating video, we were able to spread awareness to a wide audience in a short period of time. Engaging families throughout the project was critical to the success of the video. By working together, we hope to continue bridging research and practice and moving the 'F-words' concepts forward one 'word' at a time.

Background Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. Methods This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. Results Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the “softer” building blocks of CanChild’s culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family–researcher partnerships. Conclusion Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.

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PURPOSE: This study aimed to 1) investigate the convergent and discriminant validity, internal consistency, and test-retest reliability of the Canadian English version of the Computer-Based instrument for Low motor Language Testing (C-BiLLT-CAN), and 2) explore feasibility of the C-BiLLT assessment for children with cerebral palsy (CP) and complex communication needs in the Canadian health care context. METHODS: Eighty typically developing children between 1.5 and 8.5 years of age completed the C-BiLLT-CAN, the Peabody Picture Vocabulary Test-IV (PPVT-4), the receptive language sub-test of the New Reynell Developmental Language Scales (NRDLS), and/or the Raven’s 2. Correlations between raw scores were calculated for estimates of convergent and discriminant validity. Internal consistency was calculated for all items and separately for items pertaining to vocabulary and grammar. To calculate the standard error of measurement (SEM) and intraclass correlation coefficient (ICC), 33 participants were re-tested with the C-BiLLT within three weeks. Feasibility was explored with nine participants with CP. RESULTS: C-BiLLT-CAN’s convergent validity was good to excellent (Spearman’s rho >  0.78) and discriminant validity was higher than hypothesized (Spearman’s rho >  0.8). Internal consistency (Cronbach’s alpha = 0.96), test-retest reliability (ICC >  0.9), and measurement error (SEM <  5%) were excellent. The feasibility study could not be fully completed due to the COVID-19 pandemic. Preliminary data demonstrated some technical and practical barriers for using the C-BiLLT in children with CP in Canada. CONCLUSION: The C-BiLLT-CAN demonstrates good to excellent psychometric properties in a sample of typically developing children, indicating that it is an adequate test for measuring language comprehension in English-speaking Canadian children. Further research is needed to investigate the feasibility of the C-BiLLT-CAN in children with CP.