Ontario Neurotrauma Foundation

Clinical Practice Guideline

For the rehabilitation of Adults with Moderate to Severe TBI

Ontario Neurotrauma Foundation INESSS
SECTION 1: Components of the Optimal TBI Rehabilitation System > E. Caregivers and Families

E. Caregivers and Families

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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 not able to return to the community. Caregivers should be provided with information, support, education and training to support them in this role.  Information about TBI should be provided early and in a continued manner throughout the continuum of care. The caregiver should also be provided with information about resources to assist in their own coping and adjustment to the traumatic brain injury.  The presence of social supports and broader family functioning has been shown to have important impacts on the coping ability of the caregiver.   Details should be obtained from caregivers regarding the family context and their own needs, in order to understand how the individual with MSTBI can best be supported over time. 

Rehabilitation programs should have access to written and online materials that inform and educate caregivers about TBI to provide to caregiver(s) in a progressive, sequenced manner based on a realistic assessment of their learning needs and readiness given the time post brain injury.   Programs should educate and train caregivers on how to assist the person with MSTBI and how to manage potential behavioural and cognitive deficits.  Rehabilitation staff should be trained to educate/train caregivers on how to best provide support to the person with MSTBI.   Programs should have information about nearby or regionally appropriate resources that the caregiver can access for their own emotional support and counseling.  This may need to be revisited and re-emphasized over time.

 

Indicators examples

  • Proportion of patients for whom the rehabilitation program was developed in collaboration with the principal caregiver(s).

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. However, education and information may not be enough and methods of actually implementing this knowledge may be needed in tandem in order for education to be effective. Rivera et al. (2008) conducted a study with two groups, a problem solving group and an education-only group, with the education-only group showing increases in depression and more health complaints. 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).

The need for social relationships and support systems is also important. Several studies have found that caregivers who meet with friends less frequently and receive less social support typically feel more burdened and isolated (Coy et al., 2013; Davis et al., 2009; Manskow et al., 2015). The role of the family has also 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
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 Injury, 26(6), 834-843.

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.

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.

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.

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.

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.

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E1. Supporting Caregivers for Discharge and Community Living

P Priority F Fundamental New Level of evidence A B C
E 1.1 F C

Rehabilitation programs for individuals with traumatic brain injury should be developed in collaboration with caregivers to ensure carryover into the community.

(Adapted from ABIKUS 2007, G98, p. 33) 

E 1.2 C

Individuals who assume a caregiver role (e.g., family members, spouse, non-professional paid caregivers) to a person with traumatic brain injury should be provided with information relevant to their role. This should include but not be limited to the need for support, training and education; and practical and emotional support regarding stress, mental health issues and their own quality of life, including the need to plan respite care when required.

(Adapted from NZGG 2007, 13, p. 157)

E 1.3 P C

Family and caregivers of individuals with traumatic brain injury should be provided with access to ongoing support. Supportive groups and therapies, e.g., associations / peer support / mentoring, mindfulness-based cognitive therapy, yoga, art, pet or music therapy, etc., should be considered.

(INESSS-ONF, 2015)

E 1.4 C

The rehabilitation team should assess and document the family’s capacity for and interest in taking on a caregiver role for the person with traumatic brain injury.

(INESSS-ONF, 2015) 

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