Generating Priorities in Eating Disorder Research: Recommendations from Canadian Young Adults and Caregivers

Consensus-building approaches have seldom been used to develop research priorities informed by young adults and caregivers with lived eating disorder (ED) experience.

To identify the most important research priorities among Canadian young adults and caregivers affected by EDs.

Using the Nominal Group Technique (NGT), we recruited Canadian young adults (ages 18-29) with pediatric ED treatment experience and their caregivers to participate in two separate NGT panels. The panels consisted of four stages: silent generation, round robin sharing, discussion, and ranking of the generated priorities. Priorities were weighted using a points system and later added to produce a total score for young adults and caregivers. Informed by Qualitative Description, qualitative content analysis was conducted to analyze the discussion portion of the panels.

The young adult (n=9) and caregiver (n=10) panels generated 19 and 24 priorities, respectively. The most highly endorsed research priorities among young adults were to improve existing treatment models, to include underrepresented groups in ED research, and to provide more ED education for healthcare providers. Caregivers also endorsed the need for research to improve ED training for healthcare providers and for more robust standard operating procedures and best practices for EDs. In the discussion, participants shared high-level recommendations, frustrations with current ED care, and positive reflections on the NGT process.

Future research opportunities based on these generated priorities have the potential to improve alignment and relevance between ED research being conducted and the needs of young adults and caregivers affected by EDs.