A Priority Setting Partnership to Identify Research Priorities for Expectant Families and Those With Children to Age 24 Months: The Family Research Agenda Initiative Setting (FRAISE) Project

Abstract

Background: Determining parent-identified research priorities for young children in the community empowers parents as partners in pediatric research, directs more meaningful research, and reduces research waste. The objective of this study was to identify the top 10 research priorities of expectant parents and caregivers of children up to age 24 months. Method: An iterative, priority setting partnership using a modified James Lind Alliance approach was implemented in three phases. In Phase One, a steering committee of parents, clinicians, community agency representatives, and researchers was formed and established 12 categories of interest. In Phase Two, through in-person collaboration with steering committee members, an electronic survey to assess research priorities across 12 categories was developed. In Phase Three, the steering committee used several online and in-person consensus building workshops to establish the top 34 questions, which were circulated to the broader steering committee via online survey. Finally, the steering committee met in-person to determine and rank a top-11 list of parent-identified research priorities. Selecting 11 priorities as opposed to 10 priorities was the steering committee consensus. Findings: In total 596 participants consented; with 479 completed surveys providing 3232 responses, with 202 unique priorities. The top 10 (plus 1) research priorities included questions about: 1) developing healthy coping strategies and emotion regulation, 2) managing unexpected outcomes during pregnancy and labour/delivery, 3) prevention and treatment access for mental health concerns, 4) navigating health information, 5) creating multi-level supports for healthy relationships, 6) prevention and treatment of eczema and allergies, 7) managing developmentally appropriate risk taking, 8) culturally appropriate sleep strategies, 9) infant feeding, 10) supporting healthy child development, and 11) vaccine hesitancy. Interpretation: The findings will direct future maternal-child research and health-promoting interventions, ensuring they are rooted in parent-identified priorities that represent contemporary needs. Funding Statement: We are grateful for funding provided by the Alberta Children’s Hospital Research Institute and by Alberta Innovates. Declaration of Interests: We declare no competing interests. Ethics Approval Statement: The Conjoint Health Research Ethics Board at the University of Calgary (REB17-0014) approved this research.