# Informing Eating Disorder Support Through Lived Experience

**Authors:** Samantha H. Irwin, Abigail McCluskey, Sunny Y. Dong, Isra Amsdr, Anne Marie Portelli, Carla Southward, Britt Udall, Francine Buchanan, Matt Carwana, Nadia Roumeliotis, POPCORN Executive Committee

PMC · DOI: 10.1177/23743735251346617 · Journal of Patient Experience · 2025-05-30

## TL;DR

Youth with eating disorder experiences explain how pandemic disruptions may have increased hospitalizations and suggest ways to improve care.

## Contribution

Youth patient partners provide lived experience insights to inform eating disorder care during the pandemic.

## Key findings

- Unpredictable changes to daily routines during the pandemic may have worsened eating disorder symptoms.
- Health system challenges during the pandemic likely contributed to increased hospitalizations.
- Incorporating youth patient perspectives can improve equitable and accessible care.

## Abstract

An increase in eating disorder hospitalizations was observed amongst Canadian adolescents during COVID-19 public health restrictions. To help understand why this may have occurred, youth with lived experience of an eating disorder share their interpretations of these findings. This article, written by youth patient partners, provides insights into how unpredictable changes to daily routines and health system challenges during the COVID-19 pandemic might have influenced eating disorder hospitalizations. The increase in hospitalizations during the pandemic, combined with our lived experience advisory, underscores gaps in current approaches to supporting young people with eating disorders. We provide suggestions for clinicians, researchers, and policymakers stemming from our patient experiences in hopes that equitable, accessible, and patient-centered support can be prioritized to improve eating disorder-related care. This collaboration establishes a precedent for incorporating the voices of youth patient partners to better translate and mobilize research. These reflections serve as an example of how youth patient partner involvement can inspire future research, healthcare, and policy to advance care for those impacted by eating disorders.

## Linked entities

- **Diseases:** eating disorder (MONDO:0005451)

## Full-text entities

- **Diseases:** Eating Disorder (MESH:D001068), COVID-19 (MESH:D000086382)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## Figures

1 figure with captions in the complete paper: https://tomesphere.com/paper/PMC12126641/full.md

## References

10 references — full list in the complete paper: https://tomesphere.com/paper/PMC12126641/full.md

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Source: https://tomesphere.com/paper/PMC12126641