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
Meredith Brockway, Elizabeth Keys, Katherine Bright, Carla Ginn, Leslie Conlon, Stephanie M. Doane, J. Wilson, Lianne Tomfohr‐Madsen, Karen Benzies
Abstract
OBJECTIVE: The study objective was to identify the top 10 research priorities for expectant parents and caregivers of children up to age 24 months. DESIGN: A priority setting partnership using a modified James Lind Alliance approach was implemented. First, a core steering committee was formed, consisting of 17 parents, clinicians and community agency representatives. Second, through in-person collaboration with steering committee members, we developed and distributed a survey to identify research priorities across 12 topics. In total, 596 participants consented and 480 completed the survey. Survey responses were grouped and themed into codes during a consensus-building workshop with steering committee members (n=18). Research and practice experts were consulted to provide feedback on which themes had already been researched. An in-person (n=21) workshop was used to establish the top 34 priorities, which were circulated to the broader steering committee (n=25) via an online survey. Finally, the core steering committee members (n=18) met to determine and rank a top 10 (plus 1) list of research priorities. SETTING: This study was conducted in Alberta, Canada. PARTICIPANTS: Expectant parents and caregivers of children up to age 24 months. RESULTS: Survey results provided 3232 responses, with 202 unique priorities. After expert feedback and steering committee consensus, a list of 34 priorities was moved forward for final consideration. The final top 10 (plus 1) research priorities included three priorities on mental health/relationships, two priorities on each of access to information, immunity and child development, and one priority on each of sleep, pregnancy/labour and feeding. Selecting 11 instead of 10 priorities was based on steering committee consensus. CONCLUSIONS: The findings will direct future maternal-child research, ensuring it is rooted in parent-identified priorities that represent contemporary needs. To provide meaningful outcomes, research in these priority areas must consider diverse socioeconomic backgrounds and experiences.