National Eating Disorders Association

The Background

When a friend or family member is diagnosed with an eating disorder, it’s often terrifying and confusing. How did this happen to our family? Is my child going to be okay? Will my friend ever get better? It’s all too easy to get tangled in these questions and become mentally trapped, paralyzed with fear and unable to help yourself—or your loved one.

Helping your loved one recover from an eating disorder will take a lot of work from everyone involved. As with many jobs, having the right tools is crucial. Eating disorders have a steep learning curve, and you and your family member will need to develop lots of tools to work towards recovery.

The NEDA Parent Toolkit was created to provide some of these tools that can be used in critical moments in your search for help, hope and healing. As one parent told us, “this toolkit was exactly the resource we needed when we started the journey for our family, we needed real resources, reassurance that we were not the only family with the challenge and that there would be light at the end of that tunnel.” The toolkits are designed to put crucial information at your fingertips and offer your family a range of ideas on how to best help your loved one recover from an eating disorder. Some of the questions you might find answered in the following pages are:

  • What are eating disorders and how are they treated?
  • What are signs of a medical or psychiatric emergency?
  • How do I deal with school issues while my child is ill?
  • What types of treatment are available?
  • How do I know what type of treatment will work best?
  • How do I get my insurance company to cover my loved one’s treatment?

Of course, no toolkit, no matter how thorough, could possibly address the diverse range of issues that are unique to each individual and family. Instead, our goal is to provide a comprehensive overview of eating disorders and treatment in one easy-to-use document. We have provided resources for more in-depth information that may address these unique issues.

Our goal is to maintain the usefulness of the toolkits by treating them as ever-evolving documents. We will continue reviewing and revising them, adding the most up-to-date research and information. NEDA’s clinical advisors will be the primary reviewers, along with other experts and stakeholders invited by NEDA, including families and members of professional organizations that will be disseminating the toolkits. If you have suggestions for improvement, we want to hear from you!

A Brief History of the Toolkits

In September 2007 the Board of Directors of NEDA officially approved the organization’s new strategic priorities, listing educational toolkits as a new NEDA priority fitting the new mission: “To support those affected by eating disorders and be a catalyst for prevention, cures, and access to quality care.”

Educational Toolkits were created to strengthen NEDA’s online material offerings and provide vital information to targeted audiences. A list of audiences was prioritized by the board and serves as a reference for ongoing materials and toolkit development.

The toolkits were initially developed to combine existing information with new findings to create a complete package to assist individuals in their search for information and help. They were meant to provide guidance, not create standards of care, and would be based on the best available information at the time of development.

The first toolkits were created with the assistance of the ECRI Institute, an organization known for its ability to translate complex healthcare research into accessible, usable information. After developing the first draft of the Parent Toolkit, NEDA and ECRI convened several focus groups of parents to review the document. Together with input from NEDA’s Board of Directors and other eating disorders experts, the first Parent Toolkit was released in 2008. A revised Parent Toolkit was released two years later.

With the continuing advances in eating disorder research and treatment, NEDA realized that another more significant revision was needed. Again, the input of parents, former eating disorder sufferers, and eating disorder experts was used to further refine the draft document. In 2015, version 3.0 of the Parent Toolkit was released.

We are currently seeking funding for the ongoing development of toolkits, as well as distribution and marketing. If you or anyone you know may be interested in contributing to, sponsoring or providing a grant to support these efforts, please be sure to contact our Development Office at 212-575-6200, ext. 307; [email protected].

We hope you’ll find these toolkits useful and will share this resource with others.