People living with the effects of traumatic brain injury (TBI) and their families/caregivers report a need for early, continuous, comprehensive information and education, formal and informal advocacy, empowerment of persons with TBI and their families/caregivers, and human connectedness and social belonging.
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. Education providers should vary the amount and content of the information provided according to the readiness of the individual and timing post-injury.
Educating other people (e.g., friends, family, neighbours, educators) who might commonly encounter individuals with TBI can improve understanding of the challenges faced and supports required by persons with lived experience. Public education should be catered to the specific audience to best support the person with TBI in the respective environments (e.g., schools, legal system, vocational environment, shelters for the homeless, mental health and addiction services).
Rehabilitation programs and services should have a standardized way to assess the knowledge level and readiness for education of the person with traumatic brain injury (TBI) and their caregivers. Providers should offer written information to persons with lived experience and their families/caregivers in a progressive, sequenced and culturally sensitive way. This should be accompanied by education sessions to explain and discuss the TBI, its sequelae, the opportunities for continued progress through the engagement in activities of daily living, and how needs may evolve over time.
Program managers/case coordinators should identify clinicians who will be responsible for educational interventions and set aside times for this to occur in an individual and/or group format, depending on the preferences of the person with TBI. This can occur in conjunction with family/caregiver conferences during inpatient rehabilitation. Rehabilitation staff should be trained on how to sensitively educate the person with TBI and their caregivers; cultural sensitivity training should be provided to rehabilitation staff to manage these discussions. Programs should work collaboratively with regional and provincial brain injury associations to develop or obtain materials that can assist in providing educational interventions and promote engagement with brain injury associations after discharge.
Brain injury associations should develop educational materials and programs to educate people in the community who might commonly encounter people with TBI. Educational materials should be catered to the specific audience. Audiences may include educators, mental health and addiction service providers, police officers, probation and parole officers and employers.
Indicators exemples
Proportion of the following nine topics which are addressed in the written information package provided to individuals and their caregivers:
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:
Other Resources:
Informing Patients and Caregivers about TBI
Patients and families have included early, continuous, comprehensive service delivery, information and education, formal and informal advocacy, empowerment of persons with traumatic brain injury (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 with this information in a way that is understood.
Several studies examined whether an educational intervention was effective for promoting psychological well-being and reducing emotional burden in caregivers of individuals with TBI. Fortune et al. (2016) provided educational modules on a variety of different topics for caregivers of individuals with TBI and reported that it did not improve caregiver depression or anxiety in comparison to wait-list control participants, but there were significant improvements in caregiver strain and perceived criticism. Morris (2001) found that providing educational material to caregivers did not impact caregiver depression or anxiety. From these two studies educational interventions do not appear to have a beneficial impact on caregiver depression, although they may have positive impacts on other caregiver outcomes. In another study, educational intervention along with psychosocial support provided through counselling was shown to reduce emotional burden and improve psychological health in caregivers of individuals with chronic TBI at 1-year follow-up (Geurtsen et al., 2011).
Educational interventions provide an opportunity for individuals with TBI and their caregivers to learn more about the potential challenges encountered following a brain injury, as well as the resources that are available to them. Trexler et al. (2010) highlight the importance of resource facilitators, who provide support for transitioning back into the community for individuals with an TBI. They provide a comprehensive explanation of available resources for individuals with an TBI, as well as how to access them (Trexler et al., 2010). Part of their focus is to assist with vocational goals when desired by the individual.
Public and Community Awareness
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 personnel and first responders regarding how to effectively communicate with individuals post-TBI was evident. Police officers were trained to respond to individuals with TBI, 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 TBI.
Groups that are more likely to encounter individuals with TBI include but are not limited to: extended family and friends, brain injury associations, homes for victims of intimate partner violence, mental health and addiction service providers, legal/justice professionals, transportation sectors, social services, correction sectors, homeless sectors, primary care providers, police officers, parole officers, emergency medical services (EMS), educators, teachers, and employers.
REFERENCES
Acquired Brain Injury Knowledge Uptake Strategy (ABIKUS) (2007).
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 Inj, 27(12), 1441-1449.
Evidence-Based Review of Moderate To Severe Acquired Brain Injury (ERABI). (2016). https://erabi.ca/.
Fortune, D. G., Rogan, C. R., & Richards, H. L. (2016). A structured multicomponent group program for carers of people with acquired brain injury: Effects on perceived criticism, strain, and psychological distress. Br J Health Psychol, 21(1), 224-243.
Geurtsen, G. J., van Heugten, C. M., Martina, J. D., Rietveld, A. C., Meijer, R., & Geurts, A. C. (2011). A prospective study to evaluate a residential community reintegration program for patients with chronic acquired brain injury. Arch Phys Med Rehabil, 92(5), 696-704.
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 Inj, 18(12), 1191-1208.
Morris, K. C. (2001). Psychological distress in carers of head injured individuals: the provision of written information. Brain Inj, 15(3), 239-254.
New Zealand Guidelines Group (NZGG). (2007).
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.
Trexler, L. E., Trexler, L. C., Malec, J. F., Klyce, D., & Parrott, D. (2010). Prospective randomized controlled trial of resource facilitation on community participation and vocational outcome following brain injury. J Head Trauma Rehabil, 25(6), 440-446.
Wasilewski, M. B., Rios, J., Simpson, R., Hitzig, S. L., Gotlib Conn, L., MacKay, C., Mayo, A. L., & Robinson, L. R. (2023). Peer support for traumatic injury survivors: A scoping review. Disabil Rehabil, 45(13), 2199-2232.
Individuals who have had a traumatic brain injury (TBI) and individuals who assume caregiver roles should receive timely, progressive and regular information and advice on TBI that is adapted to age, culture and linguistics, in both written and verbal format. The information should include:
Last Updated February 2023
Individuals with TBI and their families/ caregivers should be given the opportunity, through system navigation and referral, to discuss the impact of TBI on their lives with someone who is experienced in managing the emotional impact of TBI. This may include a social worker, clinical psychologist/neuropsychologist, psychotherapist, primary care provider, regulated professional moderated peer support group, etc.
REFERENCE:
Last Updated February 2023
Individuals with TBI and their families/caregivers should be advised that recovery after TBI is lifelong and that gains can continually be made over a period of months and years. Every TBI is unique so the extent of the recovery cannot be predicted. However, spontaneous recovery and continued effort and practice, using tasks of therapeutic value learned during rehabilitation targeting deficits, will support both maintenance and continued improvement in abilities and functioning. Individuals with TBI and their families/caregivers should be encouraged to continually educate themselves about their injury and approaches/interventions that can help with prognosis, reintegration, function, or performing activities of daily living (e.g., joining support groups, attending conferences, reading evidence-based sources, etc.).
Last Updated February 2023
Traumatic brain injury (TBI) rehabilitation programs should participate in organizing education activities aimed at increasing public/community awareness and understanding of the needs and special challenges of individuals with TBI.
NOTE: Groups more inclined to encounter individuals with TBI include, but are not limited to: extended family and friends, brain injury associations, homes for victims of conjugal violence, mental health and addiction service providers, legal/justice professionals, transportation sectors, social services, correction sectors, homeless sectors, primary care providers, police officers, parole officers, emergency medical services (EMS), educators, teachers, and employers.
Last Updated February 2023