People living with the effects of brain injury and their families frequently report not having received all the information they need related to the brain injury. Information provided in meaningful ways can assist in understanding what has happened to the individual, potential changes or challenges, and the impacts of these. Education should be provided through a combination of in-person, group and written forms in culturally sensitive and easily understood ways. Information about available community resources and internet resources should also be provided. Educating groups who might commonly encounter individuals with traumatic brain injury (TBI) can improve understanding of special needs and challenges. Education providers should vary the amount and content of the information according to the readiness of the individual and timing post-injury.

Rehabilitation programs and services should have a standardized way to assess the knowledge and readiness of the brain injury survivor and his/her family for education. Providers should offer written information to patients and families in a progressive and sequenced way. This should be accompanied by education sessions to explain and discuss the TBI, its effects and how they can change over time and how these can be managed. Program managers should identify clinicians who will be responsible for this intervention and set aside times for this to occur in individual, family and/or group format. This can occur in conjunction with team meetings that involve the individual and family members. Cultural sensitivity training can help rehabilitation clinicians manage these discussions. Programs should work collaboratively with regional and provincial brain injury associations to develop or obtain materials that can assist in providing this education. Brain injury associations should develop information and programs to educate people in the community who might commonly encounter people with MSTBI.

Indicators exemples

• Proportion of the following nine topics which are addressed in the written information package provided to individuals and their caregivers:

  1. Common physical, cognitive, behavioral and emotional consequences of traumatic brain injury;

  2. Reassurance about symptoms and signs which might be expected;

  3. The possibility of long-term problems;

  4. Advice on high-risk situations, safety and self-care measures;

  5. Advice on the interactions between alcohol and psychoactive drugs;

  6. Advice on alcohol or drug misuse for individuals who initially presented with drug or alcohol intoxication;

  7. Rehabilitation services and resources;

  8. Community resources;

  9. The difficulty of detecting traumatic brain injury-related problems by those who do not know about the injury.

The following are suggestions of tools and resources that can be used to support the implementation of the recommendations in this section. Healthcare professionals must respect the legal and normative regulations of the regulatory bodies, in particular with regards to scopes of practice and restricted/protected activities, as these may differ provincially

Patient and Family Resources:

• Information for people with TBI – BrainLine
• Caregiving and TBI – BrainLine
• Materials on living with brain injury – OBIA
• Traumatic Brain Injury – Brochure Intended for Victims and Family Members – SAAQ
• Traumatisme crânien : des témoignages (Brain Injury: testimonials) – RAPTCCQ (in French only)
• Guide d’information à l’intention des familles de personnes ayant subi un traumatisme cranio-cérébral modéré ou sévère (Guide for Families of Individuals with Moderate or Severe Traumatic Brain Injury) – HSCM (in French only)
• La maman de Simon a eu un accident – cahier de l’enfant (Simon’s Mother Had an Accident – Child's Notebook) – IRDPQ, CIUSSS CN (in French only)
• Movie: The crash reel – the ride of a lifetime

Other Resources:

• 2012 OBIA Impact Report is a statistical snapshot of ABI and its effects on survivors and caregivers – OBIA
• Communication with Patients and Families about TBI – BrainLine

Patients and families have included early, continuous, comprehensive service delivery; information and education; formal and informal advocacy; empowerment of persons with TBI and their families; and human connectedness and social belonging as perceived post-discharge needs (Leith et al., 2004). A need for linkage to services, improved access to information about available services and increased availability of services were noted in another study (Sample & Langlois, 2005). With the majority of unmet needs revolving around the health information of the patient (Doyle et al., 2013), it is important that both the patient and their families remain informed and are provided this information in a way that is understood.

Beyond the patient and the families, there is also a need to educate the public/community and raise both awareness and understanding of the needs and challenges of individuals with TBI. In a RCT conducted by Togher et al., (2004) the benefits of training personal regarding how to effectively communicate with individuals post-ABI was evident. Police officers were trained to respond to individuals with ABI, while the remaining officers who volunteered did not participate in the training. It was found that trained officers significantly reduced the number of moves (inquiries) required to gain the necessary information from their emergency callers, as well as spent less time establishing the nature of the service request and more time answering the questions being presented to the officers by those with an ABI.

REFERENCES
Doyle, S. T., Perrin, P. B., Diaz Sosa, D. M., Espinosa Jove, I. G., Lee, G. K., & Arango-Lasprilla, J. C. (2013). Connecting family needs and TBI caregiver mental health in Mexico City, Mexico. Brain Injury, 27(12), 1441-1449.

Leith, K. H., Phillips, L., & Sample, P. L. (2004). Exploring the service needs and experiences of persons with TBI and their families: the South Carolina experience. Brain Injury, 18(12), 1191-1208.

Sample, P. L., & Langlois, J. A. (2005). Linking people with traumatic brain injury to services: successes and challenges in Colorado. J Head Trauma Rehabil, 20(3), 270-278.

Togher, L., McDonald, S., Code, C., & Grant, S. (2004). Training communication partners of people with traumatic brain injury: A randomised controlled trial. Aphasiology, 18(4), 313-335.