ACRM Disorders of Consciousness Education Project

ACRM Disorders of Consciousness Family Education  

This project was started as a result of the lack of information that is available to families who’s loved ones are in disorders of consciousness (DOC).  A committee was convened to identify what family education materials exists in brain injury programs that serve people in DOC.  The goals of the committee were:

1. To collect information and resources that can be shared among families and caregivers as well as service providers.
2. To catalogue educational and informational materials that families and caregivers can access to help them better understand and manage their loved ones' care.
3. To identify gaps in information that was collected
4. Disseminate information to the community and make it accessible

The following information is a compilation of online resources identified by a workgroup looking to improve information dissemination on Disorders of Consciousness (DoC).  The information was provided by CARF Accredited Brain Injury facilities as well as TBI Model System centers from all over the country that were willing to share their resources.  Resources have been sorted into different subcategories (e.g. Information about the mind or Information about the body) to aid in navigating to relevant information.  Due to this organization, one may find resources linked under both categories, if applicable.  The information is not comprehensive in nature but is a means for consumers to learn and begin to understand the complicated world of severe brain injury and DoC.  Not all information will be applicable to each individual case and it is recommended that you consult your doctor and treatment team for individual needs.

* Please defer to the recommendations of your treatment team and use the resources below as additional information to improve your skills. *

• Focus Group Instructions
• Family-Caregiver questionnaire
• Family-Caregiver Focus Group questions
• Professional questionnaire
• Professional Focus Group questions
• Parent Interview