Top 10 (Plus 1) Research Priorities for Expectant Families and Those with Children to Age 24 Months in Alberta, Canada: Results from the Family Research Agenda Initiative Setting (FRAISE) Priority Setting Partnership Project

For which topic were research priorities identified?

expectant families

In which location was the research priority setting conducted?

North America - Canada

Why was it conducted at all?

The dynamic nature of the contemporary maternal-child and parenting landscape may be inadequately incorporated into existing research priorities and questions. Further, researchers and clinicians often encounter difficulties effectively translating and implementing research on child health and development. As the knowledge base for supporting healthy developmental outcomes grows in breadth and scope, effectively prioritising research investment is crucial to maximise impact and minimise research waste. Understanding health research priorities of knowledge users, such as parents, clinicians and community agency representatives, is vital to conducting research that is more likely to contribute to meaningful changes in health outcomes.6 Evidence generated without the consideration of the knowledge user will have minimal effect on clinical practice and reduce meaningful outcomes.

What was the objective?

to identify the top 10 research priorities for expectant parents and caregivers of children up to age 24 months

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

November 2017 - March 2020: October 2017: steering group formation and survey development. June 2018 - November 2018: survey. November 2018: data analysis. April 2019 - August 2019: interim ranking. November 2019: interim ranking workshop. January 2019 - February 2019: interim ranking. March 2020: final prioritization workshop.

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up the PSP: The first workshop focused on introducing and training the core steering committee, orientating them to FRAISE, and developing the survey instrument. Members of the core steering group (n=17) collaboratively identified 12 broad parenting topics of interest. Researchers then developed open-ended survey questions that could elicit potential research questions from families related to each of these 12 topics. The survey was refined and piloted. Step 2: collecting research uncertainties: Survey was distributed. In total, 3232 submissions of potential research priorities spread across all 12 topic areas were received. Step 3: data analysis: In-person steering group members (n=18) worked together to group responses into themes, within each topic area. Research and practice experts provided feedback on the extent to which each of the 202 codes had been researched. The 3232 suggested priorities obtained via survey responses were coded, themed, and collapsed by the steering committee, resulting in 202 unique priorities. Step 4: workshop: The 202 unique priorities were provided to the steering group during a third consensus building workshop (n=21) to develop the top 30 list. The steering group reached a consensus that the list should include 34 priorities. The top 34 list was shared with the broader online steering committee and committee members (n=25) were asked to select and rank their top 10 selections. Step 5: These results were brought back to the fourth and final consensus building workshop (n=18) to develop the top 10 priorities. The final top 10 (plus 1) list was circulated online for final approval. Steering committee members were also asked to rank the top 10 (plus 1) priorities on their perceived order of importance.

Which stakeholders took part?

Survey: 480 participants: 76.3% parents (n=130 tablet; n=236 online), 16.0% clinicians (n=3 tablet; n=74 online), 4.8% early childhood educators (n=10 tablet; n=13 online), 2.9% community agency representatives (n=0 tablet; n=22 online).

How were stakeholders recruited?

The survey was launched online and promoted via Facebook and Twitter. In-person survey completion sessions were also held at various inner-city community and healthcare agencies where participants were provided with a tablet to record responses.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 17 members, comprised of researchers, parents and caregivers (i.e., clinicians, community agency representatives). Additionally, a larger online group of additional steering committee members (maximum of 10 members in addition) was formed to provide online feedback and consultation throughout the priority setting process. These members consisted of parents and caregivers who attended some, but not all workshops in person, as well as healthcare providers from other geographic sites in Alberta, and directors and managerial staff who were unable to attend in-person workshops due to time constraints. Steering group members designed the survey and participated in data collection via disseminating the survey through their professional and social networks and provided advice on how to increase survey response rates for diverse groups. These members also provided feedback on the survey regarding participant burden and conducted data analysis in collaboration with the researcher team. In addition, steering committee members were sponsored to participate in local, regional and national study dissemination via virtual and in-person child health rounds and conferences as well as manuscript authorship.