A Web-Based Knowledge Translation Resource for Families and Service Providers (The “F-Words” in Childhood Disability Knowledge Hub): Developmental and Pilot Evaluation Study

Abstract

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.

Exploring the international uptake of the “F‐words in childhood disability”: A citation analysis

“…In 2014, an integrated research team, including parents and researchers, formed at CanChild to disseminate and study the uptake of the F‐words proactively. To date, the research team has published two papers on their dissemination work (Cross et al, ; Cross et al, ). The additional four sources in this category described the F‐words research team's work as an example of stakeholder‐driven and knowledge translation research (Longo, Galvão, Ferreira, Lindquist, & Shikako‐Thomas, ; Phoenix et al, ; Rosenbaum, ; Miller & Rosenbaum, ; Table ).…”

“…Since the publication of the F‐words paper in 2012, there has been increasing national and international interest and uptake by people around the world. In 2014, an integrated research team of parents and health services researchers was formed to promote and study systematically the dissemination and implementation of the F‐words in practice (Cross et al, ; Cross, Rosenbaum, Grahovac, Kay, & Gorter, ). Since then, the research team has worked with many stakeholders (including families, service providers, and administrators) to develop and share tools and resources to support the adoption of the F‐words in practice.…”

Development of a Video-based Evidence Synthesis Knowledge Translation Resource: Applying a User-Centred Approach

“…However, previous research has shown that such resources are often poorly explored and evaluated [29, 30]. Recent work by Cross et al involved participation between families and researchers in the area of childhood disability to develop, implement and evaluate a web-based KT resource to promote adoption of the ‘F-words’ concepts [15]. The project used the Knowledge-To-Action Framework [31] to guide this process and culminated in developing a theory-informed resource that was deemed relevant and meaningful to its target audiences.…”

“…KT efforts have predominantly focused on increasing awareness and understanding among targeted populations regarding specific clinical topics, disease areas and potential treatments, rather than explaining methodological aspects of healthcare research that are relevant to the general public, such as the importance of evidence synthesis [12-14]. In addition, there is a distinct lack of evidence regarding the development of existing KT resources and how to incorporate an evidence-based approach, and a limited number of examples exist describing this process [15].…”

Online peer mentorship programmes for children and adolescents with neurodevelopmental disabilities: A systematic review

“…Few studies were considered of poor quality due to small sample size (Barnfather et al, 2011;Burgstahler & Crawford, 2007;Cole et al, 2017;Gwynette et al, 2017;Jiam, Hoon Jr, Hostetter, & Khare, 2017;Stewart et al, 2011), convenience sampling strategy (Burgstahler & Crawford, 2007;Cross et al, 2018;Gwynette et al, 2017;Jiam, Hoon, Hostetter, & Khare, 2017;Margalit & Raskind, 2009;Stewart et al, 2011), and no description of validation of the assessment tool (Burgstahler & Crawford, 2007;Cole et al, 2017). The risk of bias was assessed using the six domains of the Cochrane collaboration's tool for assessing risk of bias (Higgins & Altman, 2008).…”