Generating Priorities in Eating Disorder Research & Service Provision: Recommendations from Young Adults and their Patents/Caregivers

Wendy Preskow, Founder (NIED)

National Initiative for Eating Disorders (NIED)

Drs. Gina Dimitropoulos and Jennifer Couturier served as co-Principal Investigators for this project, leading their research team through participant recruitment, data collection, analysis, interpretation, and the development of final reports and publications.

Impact

  • This is the first national study in Canada to examine research priorities for eating disorders (EDs). The goal was to identify research priorities in relation to what support most needed for young adults with eating disorders and their parents/caregivers.

  • Findings from this project will allow for researchers, healthcare providers, and policymakers better understand the current needs of those most impacted by EDs, which in turn may have an impact on future funding, resource allocation, and treatment planning in ED care and service provision.

  • The results were widely disseminated to ensure that future work is more meaningful and useful for patients, families, and care providers.

  • Ontario

  • Grant

  • University of Calgary, McMaster University

  • National Initiative for Eating Disorders

  • -

  • 2022-2023

  • Children and Youth Mental Health

  • Children (aged 1-12), Youth (aged 13-18), Families, Caregivers, People with disabilities

About the Project

This research project aimed to identify the most important areas for future research on eating disorders (EDs), based on the perspectives of young adults aged 18–29 with lived experience and their parents/caregivers. By directly involving those most affected, the study focused on understanding their priorities and recommendations to help shape future research, funding, and support efforts in the field of eating disorders.

Methodology

Demographics: To identify research priorities for eating disorders (EDs), a collaborative and structured method known as the Nominal Group Technique (NGT) Panel was employed. This approach gathered input from two key groups: young adults (aged 18–29) with lived experience of EDs, and parents or caregivers of individuals with EDs. Participants were recruited from across Canada, with attention to geographic, gender, and minoritized diversity. The final sample included 10 young adults and 10 parents/caregivers, with most residing in Ontario, and others located in British Columbia, Alberta, Manitoba, New Brunswick, and Quebec.

Collecting Data: Prior to participation, all individuals completed a demographic questionnaire collecting information on age, gender, diagnosis, and current involvement in ED-related care. Panel discussion among participants were conducted virtually via Zoom, with the young adult panel lasting approximately four hours.

The NGT Group Panels were structured into a three-phase process:

  1. Participants privately wrote down their responses to the question, “What are the main priorities for research on EDs/disordered eating from your perspective?”

  2. Participants took turns sharing ideas in a round-robin format to ensure all voices were heard

  3. Participant groups engaged in an open discussion to explore and clarify the ideas further.

Survey following the panel discussions: the research team compiled all recommendations and distributed a follow-up survey, where participants were asked to identify their top 10 priorities and rank them in order of importance. To further refine the findings, the research team reviewed relevant literature, analyzed survey responses, and conducted an interim ranking survey. The process concluded with an in-person prioritization workshop to finalize the key research recommendations.

Findings

The research revealed important priorities from both young adults with eating disorder (ED) experience and their parents/caregivers.

For young adults, their three main priorities were:

  1. Focusing on the psychological side of EDs — they wanted treatments to address the mental health and thought patterns surrounding eating disorders, not just the visible symptoms. They emphasized understanding how these thoughts influence behaviors and recovery.

  2. Including diverse groups in research — young adults highlighted the need to improve research methods so that underrepresented populations with ED symptoms are better included and studied.

  3. Improving education for healthcare providers — they stressed that doctors, therapists, dietitians, and other healthcare workers need better training on how to support people with EDs effectively.

For parents and caregivers, their three main priorities were:

  1. Enhancing education and training for healthcare providers — especially for family doctors, psychiatrists, nurses, and emergency staff, with a focus on prevention, early intervention, and managing waitlists for specialized care.

  2. Establishing clear healthcare protocols — they recommended adopting trauma-informed care and standard procedures to guide how frontline healthcare workers respond to individuals showing ED symptoms.

  3. Defining best practices for ED treatment — caregivers wanted guidance on effective treatment strategies, including weight restoration, managing treatment resistance, and involving families in the care process.

Project Outreach

The study findings were largely applicable and scalable across Canada. Future research plans include expanding the participant pool to include a larger number of young adults and parents/caregivers. Special attention will be given to recruiting individuals from a wider variety of diverse communities, including those living in rural areas, urban centers, and northern Canadian regions, to ensure broader representation.

Resources Created