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

Abstract

ObjectiveThe study objective was to identify the top 10 research priorities for expectant parents and caregivers of children up to age 24 months.DesignA 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.SettingThis study was conducted in Alberta, Canada.ParticipantsExpectant parents and caregivers of children up to age 24 months.ResultsSurvey 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.ConclusionsThe 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.

Promoting Mental Health in Parents of Young Children Using eHealth Interventions: A Systematic Review and Meta-analysis

“…Early interventions can also prevent the long-term consequences of parent mental illness from becoming imbedded in children’s biological and behavioral development (Bernard-Bonnin et al, 2004 ). Moreover, in a three-year patient-oriented research-priority setting initiative (Bright et al, 2018 ), parents of young children (from conception to age 2) identified their top priority as support for families to develop healthy coping and emotion regulation (Brockway et al, 2021 ). Families also wanted access to evidence-based information, tailored to their needs, delivered in timely formats (Brockway et al, 2021 ).…”

Building Emotional Awareness and Mental Health (BEAM): A Pilot Randomized Controlled Trial of an App-Based Program for Mothers of Toddlers

“…The BEAM App is broadly consistent with priority-setting research in parents of young children which highlights a desire for more support for families to develop healthy coping and emotion regulation (75). Parents have also indicated a need for access to evidence-based information, tailored to their needs, delivered in timely formats (75). Our team is committed to improving the BEAM program and are making multiple systematic improvements to all aspects based on pilot study results and ongoing input from the parent advisory board.…”

“…The acceptability findings and preliminary treatment effects for some of the mental health symptoms suggest that the Appbased BEAM program is promising intervention for addressing family mental health and parenting needs during the pandemic and its aftermath. The BEAM App is broadly consistent with priority-setting research in parents of young children which highlights a desire for more support for families to develop healthy coping and emotion regulation (75). Parents have also indicated a need for access to evidence-based information, tailored to their needs, delivered in timely formats (75).…”

“…The current trial was strengthened by the use of a communitybased, participatory action approach to co-develop an accessible, evidence-based digital mental health intervention. The incorporation of peer support and therapist contact directly responds to parents' needs (75), and follows best practices for digital interventions (42,44). However, the findings should be interpreted with several limitations in mind.…”

Exploring the use of social media and online methods to engage knowledge users in creating research agendas: Lessons from a pediatric cancer research priority-setting partnership

“…Our campaigns on Facebook and Instagram had substantial success in reaching knowledge users, 28,641 and 2,954 people respectively across both surveys. In a similarly Pan-Canadian PSP conducted by Brockway et al, most participants were recruited through social media campaigning (n=337, 70.2%), reflecting similar effectiveness as our initial survey dissemination, which collected responses from 330 unique respondents (12). While our PSP survey recruitment was strictly limited to social media-and electronic network-based promotions, Brockway et al integrated an in-person component where participants were informed of the study then provided with a device to record their responses (12).…”