Ontario Neurotrauma Foundation

Clinical Practice Guideline

For the rehabilitation of Adults with Moderate to Severe TBI

Ontario Neurotrauma Foundation INESSS
SECTION 2: Assessment and Rehabilitation of Brain Injury Sequelae > Q. Psychosocial / Adaptation Issues

Q. Psychosocial / Adaptation Issues

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There is wide consensus that rehabilitation goals should be individualized and meaningful to patients and take into consideration their unique strengths and challenges. This includes determining the appropriate environment for the patients as well as helping them to define meaningful activities and productivity for themselves.  Accordingly, treatment programs should reflect the individuality of the person and the uniqueness of their situation.  In the psychosocial realm this includes addressing the issues that change intimacy and other aspects of the individual’s sexuality as this has significant implications for behavior and relationships.

Traumatic Brain Injury (TBI) in adulthood often disrupts an individual’s sense of self, their roles and sense of belonging.  TBI is a difficult condition to adapt to and this needs to be supported through ongoing rehabilitation aimed at improving activities of daily living, satisfaction and productivity.   Positive psychosocial adaptation is important to an individual’s  sense of control and quality of life.  Improved coping mechanisms are associated with improved psychosocial functioning and can lessen anxiety.  Research has demonstrated the positive association between life satisfaction and employment/productivity and relationships.   Since TBI is a chronic disorder that affects the individual throughout their lifetime, individuals need to be supported in reducing isolation, having positive social relationships and engaging in productive and meaningful activity. Doing this, in turn, improves the psychosocial health and quality of life of the individual with TBI, as well as those around them.   Sexuality can be greatly impacted by the biopsychosocial effects of TBI. Attention to addressing this in a holistic manner is important to strengthening the individual’s sense of self and their relationships moving forward.

Integrated and individualized rehabilitation requires the input often of system navigators who have knowledge about local resources and can assist in making appropriate referrals to providers and facilities.  Rehabilitation teams should include specialists in psychosocial adjustment counselling.

Interventions and approaches that will enhance and improve their patients’/clients’ participation and emotional well-being should be built into the rehabilitation program early on, in order to set goals and get the individual involved in activities that are meaningful and productive to them. Rehabilitation program managers should ensure access to appropriately trained clinicians on their team, or that appropriate referrals are made, for discussion and education regarding issues of sexuality, sexual health and relationships.   Planners should understand the importance of continuing programs that increase participation and well-being in the community, long after an individual has sustained their TBI.  Improving the quality of life, adaptation and productivity of the individual with TBI can also positively impact on those around them, thus reducing caregiver burden, and improving the family’s socio-economic productivity.

 

Indicators exemples

  • Proportion of individuals with TBI for whom a discussion about sexuality, covering physical and psychological aspects, was carried out and documented in the person’s chart.

  • Proportion of individuals with TBI for whom personally relevant and meaningful productive activities are clearly documented in the treatment plan within the first six weeks after admission to rehabilitation.

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

Clinical Tools:

Patient and Family Resources:

Patients who engage in rehabilitation, whether it be community-based, in-home care, or residential transitional living programs, have all been found to experience improvements in productivity, social integration and activities of daily living (Hopman, Tate, & McCluskey, 2012). Goverover et al. (2007) found that an individual’s ability to perform instrumental activities of daily living (IADL) was stronger, and they had greater self-regulation, when self-awareness training was provided compared to conventional therapeutic interventions. In terms of improving an individual’s satisfaction with life, social relationships are important (Jacobsson & Lexell, 2013; Vandiver, 2000). The findings from Armengol (1999) suggest that social support groups which focus on education, coping skills training and goal setting result in positive changes in measures of hopelessness leading to a greater sense of control and empowerment. Social interaction through brain injury support groups can also provide individuals with a sense of belonging and reduce feelings of isolation. McLean, Jarus, Hubley, and Jongbloed (2012) studied patients at a brain injury drop-in center and found that over a third of patients’ social and leisure activities occurred there.

Learning productive coping mechanisms is also crucial. Individuals with TBI who used non-productive coping styles were found to have lower psychosocial functioning and increased anxiety. The former is concerning because the use of non-productive coping styles has been shown to increase to equal or higher levels than pre-injury (Gregorio, Gould, Spitz, van Heugten, & Ponsford, 2014). A study by Cicerone et al. (2008) found that participants in an intensive cognitive rehabilitation program which involved cognitive, emotional, interpersonal and functional interventions, had higher perceived quality of life scale scores than those receiving standard neurorehabilitation (p=0.0004).

Physical exercise and leisure activities should be encouraged during the rehabilitation process. A study by Driver, Rees, O'Connor, and Lox (2006) suggests that participation in group exercise should be encouraged as an adjunct of the rehabilitation process for patients with ABI as it can foster feelings of well-being and self-esteem which could have a positive impact upon other rehabilitation strategies (Driver et al., 2006). Any physical exercise is beneficial to patients post ABI, which has been reinforced by Schwandt et al. (2012) who demonstrated that aerobic exercises (ergometer, treadmill, or recumbent step machine) all lead to a reduction in depressive symptoms, improved self-esteem and improved aerobic capacity.

Life satisfaction following ABI seems to be directly related to employment and social integration (Corrigan, Bogner, Mysiw, Clinchot, & Fugate, 2001; Tennant, Macdermott, & Neary, 1995). This evidence demonstrates the importance of fostering the reintegration into meaningful, productive activity, which can be accomplished through vocational intervention. As suggested by the findings of Wall, Rosenthal, and Niemczura (1998), increased job success may be achieved through community based vocational training programs which combine the concepts of work adjustment and supported employment. Participants have shown to have increased employment success and satisfaction when techniques which foster self-confidence were used, instruction and adjustments were given for specific work tasks, and a job coach was available to minimize interpersonal problems (Wall et al., 1998).

Sexuality is also closely connected to an individual’s identity, relationships, and self-esteem (Moreno, Arango Lasprilla, Gan, & McKerral, 2013). Reduced self-esteem and a perceived decline in personal sex appeal have been reported as common personality changes following head injury (Kreuter, Dahllof, Gudjonsson, Sullivan, & Siosteen, 1998; Kreutzer & Zasler, 1989). Individuals who identified themselves as ‘impaired’ or inadequate in some way did not perceive themselves as confident or attractive and did not pursue or recognize safe opportunities for pair bonding or sexual activity. In approaching sexuality in a TBI population, a holistic perspective is necessary: neurophysiological and psychological effects, medical and physical issues, and relationship factors (Moreno et al., 2013). The complexity and interaction of these factors must be understood.

REFERENCES
Armengol, C. G. (1999). A multimodal support group with Hispanic traumatic brain injury survivors. J Head Trauma Rehabil, 14(3), 233-246.

Cicerone, K. D., Mott, T., Azulay, J., Sharlow-Galella, M. A., Ellmo, W. J., Paradise, S., & Friel, J. C. (2008). A randomized controlled trial of holistic neuropsychologic rehabilitation after traumatic brain injury. Arch Phys Med Rehabil, 89(12), 2239-2249.

Corrigan, J. D., Bogner, J. A., Mysiw, W. J., Clinchot, D., & Fugate, L. (2001). Life satisfaction after traumatic brain injury. J Head Trauma Rehabil, 16(6), 543-555.

Driver, S., Rees, K., O'Connor, J., & Lox, C. (2006). Aquatics, health-promoting self-care behaviours and adults with brain injuries. Brain Inj, 20(2), 133-141.

Goverover, Y., Johnston, M. V., Toglia, J., & Deluca, J. (2007). Treatment to improve self-awareness in persons with acquired brain injury. Brain Inj, 21(9), 913-923.

Gregorio, G. W., Gould, K. R., Spitz, G., van Heugten, C. M., & Ponsford, J. L. (2014). Changes in self-reported pre- to postinjury coping styles in the first 3 years after traumatic brain injury and the effects on psychosocial and emotional functioning and quality of life. J Head Trauma Rehabil, 29(3), E43-53.

Hopman, K., Tate, R. L., & McCluskey, A. (2012). Community-based rehabilitation following brain injury: Comparison of a transitional living program and a home-based program. Brain Impairment, 13(1), 44-61.

Jacobsson, L., & Lexell, J. (2013). Life satisfaction 6-15 years after a traumatic brain injury. J Rehabil Med, 45(10), 1010-1015.

Kreuter, M., Dahllof, A. G., Gudjonsson, G., Sullivan, M., & Siosteen, A. (1998). Sexual adjustment and its predictors after traumatic brain injury. Brain Inj, 12(5), 349-368.

Kreutzer, J. S., & Zasler, N. D. (1989). Psychosexual consequences of traumatic brain injury: methodology and preliminary findings. Brain Inj, 3(2), 177-186.

McLean, A. M., Jarus, T., Hubley, A. M., & Jongbloed, L. (2012). Differences in social participation between individuals who do and do not attend brain injury drop-in centres: A preliminary study. Brain Injury, 26(1), 83-94.

Moreno, J. A., Arango Lasprilla, J. C., Gan, C., & McKerral, M. (2013). Sexuality after traumatic brain injury: a critical review. NeuroRehabilitation, 32(1), 69-85.

Schwandt, M., Harris, J. E., Thomas, S., Keightley, M., Snaiderman, A., & Colantonio, A. (2012). Feasibility and effect of aerobic exercise for lowering depressive symptoms among individuals with traumatic brain injury: a pilot study. J Head Trauma Rehabil, 27(2), 99-103.

Tennant, A., Macdermott, N., & Neary, D. (1995). The long-term outcome of head injury: implications for service planning. Brain Inj, 9(6), 595-605.

Vandiver, V. L., & Christofero-Snider, C. . (2000). TBI club: A psychosocial support group for adults with traumatic brain injury. J Cogn Rehabil, 18(4), 22-27.

Wall, J. R., Rosenthal, M., & Niemczura, J. G. (1998). Community-based training after acquired brain injury: preliminary findings. Brain Inj, 12(3), 215-224.

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Q1. Psychosocial / Adaptation Issues

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

Rehabilitation programs aimed at improving social adaptation and a sense of well-being after traumatic brain injury should actively encourage physical exercise, leisure activities, self-regulation, coping skills, and participation in social support groups.

(INESSS-ONF, 2015)

Q 1.2 P C

Participation in personally relevant and meaningful productive activities, including work, should be included as early as possible in the individualized treatment planning of the person with traumatic brain injury, while considering the person’s actual capacities.

(INESSS-ONF, 2015)

Q 1.3 P C

A discussion about sexuality should be carried out with individuals following traumatic brain injury. The discussion should be initiated by an appropriately trained clinician and should cover the following aspects of sexuality:

  • Physical aspects (e.g., positioning, sensory deficits, erectile dysfunction, drugs, disruption to menstrual cycle)

  • Psychological aspects (e.g., communication, fears, altered roles, disinhibition, threats to safety, and sense of attractiveness)

(Adapted from NZGG 2006, 6.5, p. 113)

Q 1.4 C

Intervention and education about sexuality in individuals with traumatic brain injury should take into account cultural identity, gender, age, sex and sexual orientation.

(INESSS-ONF, 2015)

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