Survey Results

Executive Summary

World Eating Disorders Action Day began as a kernel of an idea amongst a handful of parent and affected people activists from the virtual advocacy group International Eating Disorders Action in November 2015 and quickly gained support and interest across the globe. The small group decided that there was a need for ONE DAY across the globe to raise awareness about eating disorders, dispel myths, and ‘change the face’ of eating disorders by embracing the diverse groups who are affected and unite activists on a shared platform across the globe. Within a matter of weeks, World Eating Disorders Action Day was born!

World Eating Disorders Action Day is a 100% volunteer, grassroots collective. To ensure a consultative and representative approach, a purposive selection of leaders from diverse populations and communities was proposed to make up the Steering Committee of the first World Eating Disorders Action Day. The collective does not receive funds from any organization; volunteers from non profit groups or individual activists make up the Steering Committee. The Steering Committee has guided the major decisions around World Eating Disorders Day, with extensive input from the hundreds of activists who are part of the Facebook ‘team’ managing the activities. We chose the date of June 2, 2016 for World Eating Disorders Action Day, collectively developed guiding principles, a Mission and Vision, Key Messages, branding, and determined the key activities. See www.worldeatingdisordersday.org for Key Messages and information.

World Eating Disorders Action Day now boasts close to 200 organizations from 40 countries with groups requesting to join daily. We have a presence on Facebook, Twitter, Instagram, LinkedIn, and YouTube, as well as a vibrant website with detailed information about the Day and how to Get Involved. We have published over 40 blog posts from leading thinkers in the field, showing state of the art research and program findings, culturally and globally diverse experiences of eating disorders, and hopeful personal stories.

On June 2, 2016 our aim is to ‘trend’ the hashtag #WeDoAct on Twitter and massively increase our social media following across all platforms. We will launch a celebrity PSA, hold 30 hours of ‘Around the Clock’ Tweetchats hosted by a diverse group of global leaders, and hold local events led by in-country teams. We will also share a collectively developed manifesto for change, “NINE GOALS,” that can be used nationally and internationally to advocate for change. To gather data to assist in developing the NINE GOALS, the Steering Committee carried out a short survey available online to all.

The World ED Day community survey was developed by several members of the Steering Committee and launched in April 2016. Herein are the results of the survey. We thank Kristine Vazzano, World ED Day Steering Committee and AED Advocacy Committee representative for developing and managing the survey implementation and Rachel Presskreischer from National Eating Disorders Association (NEDA) for doing the analysis and pulling the results together. The results will be used to help develop the overarching NINE GOALS statement that will be released on June 2, 2016.

The following includes summary data and fill-in answers from the 10-question survey posted on the World ED Day website. There are tables and graphs of the quantitative data followed by the write-in answers. After reviewing the responses, 92% came from the United States (61%) and the UK/ some Commonwealth countries. This makes sense given we have heavier presence in these countries, and that the survey was written in English. In order to give some broader meaning to the numbers, the tables include breakdowns by number of respondents from one of the aforementioned countries and Mexico (the other largest responding country). The graphs were generated using the total number of responses.

Although the dominance of answers from the United States does skew the responses, it is exciting to see that there were respondents from over 30 countries.

For the fill-in answers, answers are grouped thematically. For one of the questions there were 500+ responses, thus a keyword search pulled out some of the most commonly occurring terms; those numbers are included. The qualitative responses to the survey are also very powerful and presented here in total.

Some of the major themes in the qualitative responses to Question 9 (What is the number one ISSUE/NEED related to eating disorders in your country/region?) are around families accessing early treatment, family based treatment support and training, weight stigma, and the very real challenges of ensuring providers can properly diagnose and manage eating disorders. Many people mentioned the need for education of providers and community. Many mentioned the challenges of finding adequately trained professionals.

The results cannot be truly generalized as the respondents are a self-selected group, those with internet access who use Facebook or Twitter and thus saw the advertisement, and those generally already interested in the eating disorders advocacy world.

Thank you for your participation and we hope you find the results interesting and helpful.

Steering Committee World Eating Disorders Action 2016

June Alexander
Stephanie Covington Armstrong
Lisa Burns
James Carey
Amy Cunningham
Brad Kennington
Veronica Luccioni
Gloria Lucas
Yasemin Merwede
JD Ouellette
Kira Rakova
Susan Ringwood
Dagan VanDemark
Kristine Vazzano
Lizabeth Wesely-Casella

Contact: www.worldeatingdisordersday.org; Email: worldeatingdisorderday@gmail.com

Download the full report here.