Co-Developing Innovative Tools With Parents That Merge Research and Parental Experience

Purpose: With more than 2.3 million visits annually in Canada, the emergency department (ED) care of children results in considerable financial, emotional, and resource implications for families, health systems and society. Many visits are for minor conditions that could be more aptly treated in other settings or at home (e.g., sore throats, ear infections); moreover, 1 in 5 non-admitted ED visits could be avoided. Knowledge translation (KT) initiatives that target parents and emphasize their role as a partner in health, can inform their decision-making, shape treatment expectations, and influence healthcare utilization. We have built a successful model of developing, evaluating, and disseminating effective KT tools (eBooks, whiteboards) based on the best available synthesized research evidence and the power of the arts and story to increase parent confidence and knowledge on the most prevalent conditions for which children seek care in Canada. Our purpose is to demonstrate: 1) our model of engaging parents in developing, evaluating and disseminating KT e-tools, 2) our KT e-tools, and 3) results from the usability testing.

Methods: Using our national parental needs assessment results (n=1097) we selected priority health conditions. Using qualitative methods, we interview parents about their experiences having a child with the conditions under study. Concomitantly we conduct systematic reviews of the best available research for management of the conditions. Working with creative writers and graphic designers, we develop composite narratives and then integrate synthesized research evidence to develop e-books, whiteboard videos and interactive infographics. Once we have a prototype, we conduct iterative feedback and refinement cycles with pediatric emergency health care professionals and parents. Refinements are made to the tools and then we conduct usability testing of each tool in ED waiting rooms. Usability testing assesses 10 aspects on a 5-point Likert scale (e.g., aesthetics, functionality, understandability). Once usability testing is completed, additional refinements are conducted and the e-tools are embedded in national platforms for pediatric healthcare (www.trekk.ca; www.echo.ualberta.ca; www.arche.ca). Targeted social media is completed to further enhance dissemination and uptake. Google analytics is regularly assessed and the research evidence underpinning each tool is re-examined annually.

Results: To date, we have developed 18 KT tools (e-books, interactive infographics, whiteboard animation videos, audiobooks) for parents focused on conditions such croup, gastroenteritis, procedural pain, acute otitis media, fever, bronchiolitis and urinary tract infections. We are currently developing KT tools on functional constipation and concussion. We have started to translate our tools into other languages (i.e., French, Tagalog) and we have done cultural adaptation for some of our tools for other international contexts (i.e., acute otitis media for families in Pakistan).

Conclusion: Our focus on developing KT tools for parents is innovative. The model we have developed is transferable to clinical areas beyond the pediatric ED, is scalable to international contexts, and simultaneously leverages significant economies-of-scale.