Caregivers play a vital role in the rehabilitation of the individual with moderate to severe traumatic brain injury (TBI). Without family/caregivers, many individuals are unable to return to the community. Caregivers should be provided with information, support, education and training to support them in this role.
There is evidence that intervention programs incorporating educational, skill building, emotional support, and problem-solving training components improve the well-being of caregivers of individuals with TBI. Information about TBI should be provided early and in a continuous manner across the continuum of care. The caregiver should also be provided with information on resources to assist in their own coping and adjustment to assisting in the management of TBI. The presence of social supports and a focus on broader family functioning throughout the continuum of care has been shown to have important impacts on the coping ability of the caregiver.
During caregiver assessments, details should be obtained from caregivers regarding the family context and their own needs, to understand how the individual with TBI can best be supported over time.
Throughout the continuum of care, mechanisms should be in place to facilitate collaboration with caregivers and their necessary training, with repeated caregiver assessments to monitor readiness to take on the role of essential care providers once the person with traumatic brain injury (TBI) is reintegrated into the community.
Rehabilitation programs should provide accessible written and digital informatics and training materials to the family/caregiver(s) in a progressive, sequenced manner, based on a realistic assessment of their learning needs and readiness and sensitive to their culture and beliefs, given the time post injury. Programs should train caregivers on how to assist the person with TBI and how to manage potential physical, behavioural, and cognitive deficits, as well as how to use/access services and environmental supports. The rehabilitation team should use standardized measures to assess caregiver readiness and capacity prior to community discharge.
Programs should have information about regionally appropriate or virtual resources that the caregivers can access for their own emotional support and intervention-based therapy. The discussion of support for caregiver burden should be revisited throughout the continuum of care, especially once the person with TBI is reintegrated into the community.
Indicators examples
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 Resource:
Caregiver Training and Resource Availability
Calvete and de Arroyabe (2012) in an observational study reported that caregivers regarded health information support as a valuable source, particularly in the early stages of TBI care. Doyle et al. (2013) revealed that the majority of unmet needs for caregivers revolved around health information of the patient, and that their mental health suffered from not knowing this information with increased levels of anxiety and depression. It is imperative that caregivers be educated and made aware of available services prior to their loved one being discharged; this has been shown to help caregivers feel more prepared for the future (Bowen et al., 2001).
Educational interventions can help caregivers acquire TBI-related knowledge that is applicable to everyday situations. For example, after completing six web-based videoconference sessions that combined didactic education and interactive problem-solving, caregivers of individuals with TBI indicated that they had gained knowledge applicable to the everyday problems being experienced. In addition, at 18-month follow, all participants reported having used the knowledge gained during the intervention at least once to help cope with problems that they had encountered (Sander et al., 2009).
Intervention programs incorporating educational, skill building, emotional support, and problem-solving training components have also been shown to improve the well-being of caregivers of individuals with TBI (Rivera et al., 2008). Rivera et al. (2008) compared caregivers who received problem-solving therapy to those who received only education. The treatment group showed significant decreases in depression, health complaints, and dysfunctional problem solving, but no treatment and time interactions were found for caregiver well-being or burden (Rivera et al., 2008). Likewise, another randomized controlled trial conducted by Niemeier et al. (2019) revealed that caregivers of individuals with moderate-to-severe TBI who received a manualized intervention with educational, coping, skill building, and emotional support components showed a greater decrease in emotional burden and improvement in brain injury related knowledge post-treatment than those who received education materials alone (Niemeier et al., 2018). Problem-solving therapy may thus be preferred in comparison to education-based therapy for certain aspects of caregiver burden. However, education-based is still found to be effective.
Support for Caregivers
The responsibility of providing care for individuals with TBI can lead to increased levels of stress. Caregiver characteristics, such as coping strategies, can also influence the level of stress experienced by caregivers (Chronister et al., 2016; Davis et al., 2009; Katz et al., 2005). Caregiving can increase the risk of depression, which may be greater in TBI caregivers compared to non-TBI caregivers (Warren et al., 2016). Caregiver depression is significantly correlated with burden, life satisfaction, and coping strategies (Gulin et al., 2014). Fortunately, caregiver burden has been found to decrease over time (Bayen et al., 2016; Dillahunt-Aspillaga et al., 2013), as the individual’s outcome improves, and the caregiver becomes accustomed to providing care.
The need for social relationships and support systems for caregivers has been reported in many studies. Caregivers who receive less social support typically feel more burdened and isolated (Chronister et al., 2016; Coy et al., 2013; Davis et al., 2009; Liu et al., 2015; Manskow et al., 2015; Stevens et al., 2013). Interventions of support directly address this need by providing group or individual program sessions. Telephone support groups have been found to reduce burden in comparison to traditional in-person support.
The role of the family has proven to be a vital source of support for caregivers. Perrin et al. (2013) reported that families scoring highly in cohesion, communication, and functioning resulted in lower caregiver burden and depression, and higher levels of satisfaction with life. Further, families whose members support each other, openly express their feelings, and are capable of being flexible to change demonstrate improved adjustment to the consequences of brain injury (Martin, 1988). Leibach et al. (2014) also emphasized the importance of family functioning in that all five family needs (household, informational, health, financial and social support) were significantly associated with satisfaction with life, burden, anxiety, and self-esteem in caregivers.
REFERENCES
Acquired Brain Injury Knowledge Uptake Strategy (ABIKUS) (2007).
Bayen, E., Jourdan, C., Ghout, I., Darnoux, E., Azerad, S., Vallat-Azouvi, C., Weiss, J. J., Aegerter, P., Pradat-Diehl, P., Joel, M. E., & Azouvi, P. (2016). Objective and subjective burden of informal caregivers 4 years after a severe traumatic brain injury: Results from the Paris-TBI study. J Head Trauma Rehabil, 31(5), E59-E67.
Bowen, A., Tennant, A., Neumann, V., & Chamberlain, M. A. (2001). Neuropsychological rehabilitation for traumatic brain injury: do carers benefit? Brain Inj, 15(1), 29-38.
Calvete, E., & de Arroyabe, E. L. (2012). Depression and grief in Spanish family caregivers of people with traumatic brain injury: The roles of social support and coping. Brain Inj, 26(6), 834-843.
Chronister, J., Johnson, E. T., Chan, F., Tu, W.-M., Chung, Y.-C., & Lee, G. K. (2016). Positive person–environment factors as mediators of the relationship between perceived burden and quality of life of caregivers for individuals with traumatic brain injuries. Rehabil Couns Bull, 59(4), 235-246.
Coy, A. E., Perrin, P. B., Stevens, L. F., Hubbard, R., Sosa, D. M. D., Jove, I. G. E., & Arango-Lasprilla, J. C. (2013). Moderated mediation path analysis of mexican traumatic brain injury patient social functioning, family functioning, and caregiver mental health. Arch Phys Med Rehabil, 94(2), 362-368.
Davis, L. C., Sander, A. M., Struchen, M. A., Sherer, M., Nakase-Richardson, R., & Malec, J. F. (2009). Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury. J Head Trauma Rehabil, 24(3), 145-154.
Dillahunt-Aspillaga, C., Jorgensen-Smith, T., Ehlke, S., Sosinski, M., Monroe, D., & Thor, J. (2013). Traumatic brain injury: Unmet support needs of caregivers and families in Florida. PLoS ONE, 8(12), Article e82896.
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.
Evidence-Based Review of Moderate To Severe Acquired Brain Injury (ERABI). (2016). https://erabi.ca/.
Gulin, S. L., Perrin, P. B., Stevens, L. F., Villasentild, or-Cabrera, T. J., Jimeacute, nez-Maldonado, M., Martiacute, nez-Cortes, M. L., & Arango-Lasprilla, J. C. (2014). Health-Related Quality of Life and Mental Health Outcomes in Mexican TBI Caregivers.
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Katz, S., Kravetz, S., & Grynbaum, F. (2005). Wives' coping flexibility, time since husbands' injury and the perceived burden of wives of men with traumatic brain injury. Brain Inj, 19(1), 59-66.
Leibach, G. G., Trapp, S. K., Perrin, P. B., Everhart, R. S., Cabrera, T. V., Jimenez-Maldonado, M., & Arango-Lasprilla, J. C. (2014). Family needs and TBI caregiver mental health in Guadalajara, Mexico. NeuroRehabilitation, 34(1), 167-175.
Liu, W., Zhu, J., Liu, J., & Guo, Q. (2015). Psychological state and needs of family member caregivers for victims of traumatic brain injury: A cross-sectional descriptive study. Int J Nurs Sci, 2(3), 231-236.
Manskow, U. S., Sigurdardottir, S., Roe, C., Andelic, N., Skandsen, T., Damsgard, E., . . . Anke, A. (2015). Factors Affecting Caregiver Burden 1 Year After Severe Traumatic Brain Injury: A Prospective Nationwide Multicenter Study. J Head Trauma Rehabil, 30(6), 411-423.
Martin, D. A. (1988). Children and adolescents with traumatic brain injury: impact on the family. J Learn Disabil, 21(8), 464-470.
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Niemeier, J. P., Kreutzer, J. S., Marwitz, J. H., & Sima, A. P. (2019). A Randomized Controlled Pilot Study of a Manualized Intervention for Caregivers of Patients With Traumatic Brain Injury in Inpatient Rehabilitation. Arch Phys Med Rehabil, 100(4S), S65-S75.
Perrin, P. B., Stevens, L. F., Sutter, M., Hubbard, R., Diaz Sosa, D. M., Espinosa Jove, I. G., & Arango-Lasprilla, J. C. (2013). Exploring the connections between traumatic brain injury caregiver mental health and family dynamics in Mexico City, Mexico. PM and R, 5(10), 839-849.
Rivera, P. A., Elliott, T. R., Berry, J. W., & Grant, J. S. (2008). Problem-solving training for family caregivers of persons with traumatic brain injuries: A randomized controlled trial. Arch Phys Med Rehabil, 89(5), 931-941.
Sander, A. M., Clark, A. N., Atchison, T. B., & Rueda, M. (2009). A web-based videoconferencing approach to training caregivers in rural areas to compensate for problems related to traumatic brain injury. J Head Trauma Rehabil, 24(4), 248-261.
Stevens, L. F., Gulin, S., Rogers, H. L., Cabrera, T. V., Jiménez-Maldonado, M., Arango-Lasprilla, J. C., & Perrin, P. B. (2013). Examining the Influence of Three Types of Social Support on the Mental Health of Mexican Caregivers of Individuals with Traumatic Brain Injury. Am J Phys Med Rehabil, 92(11), 959-967.
Warren, A. M., Rainey, E. E., Weddle, R. J., Bennett, M., Roden-Foreman, K., & Foreman, M. L. (2016). The intensive care unit experience: Psychological impact on family members of patients with and without traumatic brain injury. Rehabil Psychol, 61(2), 179-185.
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.
Collaboration with caregivers and community partners should occur regularly during the development of rehabilitation programs in order to ensure carryover into the community and facilitate the achievement of the persons with traumatic brain injury (TBI) rehabilitation, functional, and participation goals.
Last Updated February 2023
Individuals who assume a caregiver role (e.g., family members, spouse, non-professional paid caregivers) to a person with TBI should be provided with information relevant to their role at regular intervals throughout the continuum of care and as the needs of the person with TBI change. This should include but not be limited to the following:
We recommend comprehensive caregiver plans be put in place by team members in collaboration with caregivers prior to discharge from rehab setting, as caregivers may not anticipate a need before return to the community setting.
Last Updated February 2023
Family and caregivers of individuals with TBI should be provided with access to ongoing support services beginning at discharge from acute care. Options include support groups and various therapies including but not limited to brain injury and other associations/peer support/mentoring, mindfulness-based cognitive therapy, yoga, art, pet or music therapy, communication partner training, etc.
Multimodal therapy interventions for caregiver burden should be strongly considered, as well as different modes of delivery for support i.e., virtual versus in-person support.
NOTE: Problem-solving therapy may be preferred in comparison to education-based therapy for certain aspects of caregiver burden. However, education-based is still found effective.
NOTE: Telephone support groups have been found to reduce burden in comparison to traditional in-person support.
REFERENCE:
Last Updated February 2023
Prior to discharge the rehabilitation team should consult and collaborate with the family/caregivers to assess and document their capacity for and ongoing ability to take on a caregiver role for the person with TBI. Reassessment coordinated through the primary care provider should occur regularly in the community and resources should be provided to the person with TBI and their caregiver(s) as needed.
Last Updated February 2023