The Disorders of Consciousness Hub

Disorders of Consciousness (DoC) like coma, unresponsive wakefulness syndrome/vegetative state, and minimal conscious state, can be difficult to understand.

Many families may ask, “Why isn’t my loved one waking up?

The educational resources in this guide will help to answer that question as well as many others related to the injury, diagnosis, prognosis, resources available, and care of your loved one after severe brain injury.

About the Disorders of Consciousness Hub

This guide is for families who have a loved one that has experienced a severe brain injury that has resulted in a low level of arousal, responsiveness, and awareness of self and others. This condition after severe brain injury is called “Disorders of Consciousness” or “DoC.”

The resources/website links included have been reviewed and vetted by experts in the brain injury field as accurate to ensure you as a family are getting factual information about severe brain injury.

A Word About the Term “Recovery”

Throughout this educational guide, we’ve used the word “recovery” to describe the goal of many of the treatments, activities, and supports that are required after severe brain injury. Recovery can look very different for each individual after severe brain injury. All families have hope that their loved one will improve and return to how they were before their injury. However, recovery can take time, and some people may not achieve the level of full, pre-brain injury recovery.

This guide includes information on brain injury care that can provide you and your loved one with the knowledge and quality care to support the best outcome possible. It also provides information on next steps if your loved one does not improve as you would have hoped.

Thus, the term “recovery” is used to describe the wide range of medical and physical outcomes after DoC.

American Congress of Rehabilitation Medicine (ACRM) Brain Injury Interdisciplinary Special Interest Group (BI-ISIG) Disorders of Consciousness Family Education Committee (2022). ACRM Severe Brain Injury Family Education. [Unpublished]

Presented in partnership with American Congress of Rehabilitation Medicine (ACRM) Brain Injury Interdisciplinary Special Interest Group (BI-ISIG).

Made possible by generous support from JoJo's CauseMadonna Rehabilitation HospitalsShepherd Center, and Susan Johnson, M.A.