Highlights and challenges of co-creating evidence-based knowledge translation tools for parents about the COVID-19 pandemic
2Children's Hospital Research Institute of Manitoba, Canada
Background: The COVID-19 pandemic presented an unprecedented need for trusted evidence. We have an established program to co-create knowledge translation (KT) tools for parents and families that merge the best available research evidence with parent experiences to support decision-making for their children’s health. We received funding from the Canadian Institutes of Health Research to conduct qualitative research to identify parents’ experiences and information needs related to the pandemic and to co-create six KT tools.
Objectives: Describe the process of co-creating evidence-based KT tools for parents and discuss highlights and challenges.
Methods: We conducted qualitative interviews and focus groups with parents to understand their experiences and information needs related to caring for their children during the pandemic. We involved our established parent advisory group throughout the process to guide methods, pilot test processes, assist with recruitment, review KT tool prototypes, and participate in usability testing.
Results: The following themes were identified among parents who had managed a child with COVID-19: dealing with uncertainty, anxiety, stress and stigma, and getting through it. Themes related to the pandemic more generally were the following: loss of skill (children), changes in physical health, children’s and parents’ mental health, and accessing trustworthy information. After discussing themes with the parent advisory group, three topic areas were selected for KT tool development: managing a child with COVID-19, socialization during and beyond the pandemic, and COVID-19 vaccination. Six tools were developed: animated video and interactive infographic for each topic (https://www.echokt.ca/covid/).
Conclusions: A highlight and strength was working directly with parents. We involved our established parent advisory group as a partner on the funding application and throughout the project, and we believe this was critical to our success. Challenges included the number of KT tools (2 tools on each of 3 topics) developed using multiple methods (interviews, focus groups, living evidence synthesis) within a relatively short timeframe; changing evidence, information and protocols over time and across jurisdictions; reliance on external sources for evidence and information; appropriate messaging (informative vs. directive); and acknowledging and affirming parents’ varied experiences. Patient, public, and/or healthcare consumer involvement: Parents contributed to methods, pilot testing, recruitment, KT tool development, and usability testing.