Traumatic Brain Injury & Social Support

1. Traumatic Brain Injury & Social Support Theresa Ascheman, B. A. Doctoral Candidate in Clinical Psychology Minnesota School of Professional Psychology

2. Social Support following Traumatic Brain Injury This presentation will review the research on the importance of social support for individuals who have experienced traumatic brain injury and for their caretakers. The influence of social support on emotional, physical, social, and occupational functioning will be discussed. Specific attention will be given to sensory impairments related to brain injury and how these can influence access to social support and quality of social support.

3. Effects of TBI • “TBI results in marked cognitive, psychosocial, behavioral/emotional and physical deficits that impact the individual, family and social relationships.” • Irritability • Anger • Depression • Anxiety • Isolation • Family role changes • Financial difficulties (Arango-Lasprilla et al. 2008)

4. Emotional Effects: Depression • Approximately 33-40% of individuals meet criteria for Major Depression following a TBI. (Prigatano, & Maier, 2009) • More than half of individuals with TBI have been estimated to have significant depression symptoms post-injury. (McCauley, Boake, Levin, Contant, & Song, 2001)

5. Emotional Effects: Depression • Depressive symptoms are positively correlated with complaints of cognitive impairment and often persist regardless of cognitive recovery. • Depressed TBI patients have been found to have poorer social functioning with fewer social ties at 3, 6, and 12 months following injury compared to non-depressed patients. (McCauley, Boake, Levin, Contant, & Song, 2001)

6. Emotional Effects: Depression • Adequate social support is a significant protective factor in decreasing depressive symptoms following TBI. Poor social support in a major contributor to depression in TBI patients. (McCauley, Boake, Levin, Contant, & Song, 2001)

7. Emotional Effects: Depression • The prevalence of depression in caregivers may be even higher than the estimated rate in those with with TBI. (Douglas & Speallacy, 2000)

8. Emotional Effects: Anxiety & PTSD • Anxiety and PTSD are common following TBI. • The rate of PTSD in mild TBI patients has been estimated at 17-33%. • Anxiety, specifically PTSD, has been linked to higher rate and severity of postconcussional disorder symptoms. • More than 3x greater risk of postconcussional disorder for those diagnosed with PTSD at 3 months post-injury (McCauley, Boake, Levin, Contant, & Song, 2001)

9. Emotional Effects: Irritability • About one third of individuals experience problems with irritability following TBI. • Irritability increases the likelihood of disinhibition, socially unacceptable behavior, and negative impact on social relationships. (Prigatano, & Maier, 2009)

10. Emotional Effects: Aggression • Aggression, especially verbal, is a common consequence of TBI with rates estimated between 11 and 34%. • Aggression can result from delirium, mood disorder, or personality change secondary to TBI. • Individuals who demonstrate aggression following TBI have been found to have higher prevalence of new-onset major depressive symptoms, poorer pre-and post- injury social functioning, and increased dependency in activities of daily living secondary to TBI. (Rao et al., 2009)

11. Psychological Distress in Caregivers • Research has identified correlates of distress in caregivers, including gender, relationship to the individual with TBI, patient disability, subjective burden, financial strain, and satisfaction with social support. • In a study of severe TBI patients and their caregivers, 57% of patients and 60% of caregivers displayed significant depressive symptoms. (Douglas & Spellacy, 2000)

12. Psychological Distress in Caregivers • The problems with social support that were most frequently reported by caregivers included: • Too many demands on time (73%) • Too many responsibilities (67%) • Too little leisure time (63%) • Unsatisfactory sex life (50%) • Not seeing people you feel close to (47%) • Not enough money (5.3%) (Douglas & Spellacy, 2000)

13. Psychological Distress in Caregivers • In this study, 50% of caregiver depression was accounted for by their role (spouse vs. parent), patient disability level, and their perceived social support. A second analysis found “strong-tie” support to account for 21% of caregiver depression. • Caregivers expressed need for long term support including respite care, activity programs for patients with TBI, and counseling or support from professionals who understand brain injury. (Douglas & Spellacy, 2000)

14. Physical Effects • Motor problems • Mobility • Personal care • Activities of daily living • Headache • Nausea • Fatigue (Dikmen, Machamer, & Temkin, 2009; Prigatano, & Maier, 2009)

15. Neurocognitive Effects • TBI can result in decreased mental speed, impaired attention, cognitive inefficiency, and impaired higher-level concept formation and complex reasoning. (Lezak, Howieson, & Loring, 2004) • Research has demonstrated that individuals with TBI often have significant difficulty recognizing non-verbal cues of emotion. (Neumann, Zupan, Babbage, & Willer, 2007)

16. Sensory Effects • Sensory changes can contribute to cognitive inefficiencies and emotional distress. (NINDS, 2013) • Visual and auditory deficits are likely to affect communication. • Tinnitus, hyperacusis, photophobia often discourage individuals from engaging in social situations. (Lezak, Howieson, & Loring, 2004)

17. Communication Problems • Language and communication difficulties are common following TBI and cause miscommunication, confusion and frustration for individuals with TBI and those with whom they interact. • Eg., Wernicke’s or Sensory Aphasia (NINDS, 2013)

18. Affect Recognition • Recognizing affect by facial expression is the most common and significant difficulty with interpreting emotion for individuals with TBI. • The areas of the brain most likely to sustain damage from TBI are also those most involved in emotion- prefrontal, temporal, parietal, amygdala, and structures related to the limbic system. (Neumann, Zupan, Babbage, & Willer, 2007)

19. Affect Recognition • Impaired affect recognition is associated with difficulty in interpersonal relationships, including: • Impaired expression of empathy • Appearance of indifference to emotional needs of others • Socially inappropriate behavior (Neumann, Zupan, Babbage, & Willer, 2007)

20. Psychosocial Effects: Loss of Empathy • Research suggests that individuals with TBI are twice as likely to demonstrate lower empathy compared to individuals without TBI. • Difficulty experiencing empathy can contribute to inability to sustain interpersonal relationships. • Socially inappropriate comments (Prigatano, & Maier, 2009)

21. Psychosocial Effects: Impaired Self- Awareness • “When they fail in day-to-day life activities, they may become overwhelmed by intense anxiety and depression [. . . ] These individuals, however, often do not ruminate over how bad they are or how unimportant or meaningless their life is. Rather, they have repeated experiences of failure and do no know why they fail.” (Prigatano & Maier, 2009)

22. Psychosocial Effects: Impaired Self- Awareness • Research has found individual and group self-awareness training to be beneficial in successful performance of ADLs following TBI. • Training involves estimation of performance prior to activity, corrective feedback, problem solving, and evaluation. • Family caregivers are important in promoting self-awareness. (Goverover, Johnston, Toglia, & DeLuca, 2007)

23. Social Support • “The existence and availability of people on whom one can rely and who provide care.” • Individuals who have experienced a TBI are at high risk for significant decrease in social support (Izuate, Durozard, Aldigier, Teissedre, Perreve, & Gerbaud, 2008)

24. Social Support • Researchers generally separate types of social support into two groups: • Instrumental • Financial • Physical care • Task-oriented • Expressive of Affective • Emotional • Companionship • Conversation • Encouragement and Praise (Degeneffe, & Burcham, 2008; Douglas & Spellacy, 2000)

25. Social Support • The effect of social support has been conceptualized in the research by two main hypotheses: • Social support has an overall beneficial regardless of stressful event • Social support only improves wellbeing in individuals who are under stress (Douglas & Spellacy, 2000)

26. Perceived Social Support • Perceived social support of TBI patients has been found to have a greater effect on subjective well-being than does actual level of social support.(Izaute et. al, 2008) • Evidence suggests that a sense of belonging is more important to psychological functioning than degree of social support. (Bay, Blow, & Yan, 2012)

27. Perceived Social Support • Research has found that married individuals with TBI who felt minimal sense of belonging, being valued, and being involved with others are likely to report difficulty with regulating emotions, interpersonal interactions, displaying confidence, and showing sensitivity to the feelings of others. • Focus on increasing belonging and strengthening relationships through relationship counseling is indicated. (Bay, Blow, & Yan, 2012)

28. Social Support & Health • The availability and quality of social support likely influences the subjective feeling of health and well-being experienced by individuals with TBI. (Stålnacke, 2007)

29. Supportive Relationships • Evidence suggests that rehabilitation, particularly community-based programs using a supported relationship intervention, improves level of independence for individuals with TBI. (McCabe, Lippert, Weiser, Hilditch, Hartridge, & Villamere, 2007)

30. Community Integration • A collection of situations requiring adjustment by a person with a disability and his or her family and friends in environments and contexts mainly frequented by individuals without disabilities. • “ . . . the satisfaction experienced by the individual in their life situation, their sense of community affiliation and their self image.” (Lefebvre, Cloutier, & Levert, 2008)

31. Community Integration • Research suggests four main issues: • Access to appropriate shelter • Maintenance of important and valued social relationships, including those with non-family members • Ability to contribute to society • Access to recreational activities that provide attainment of full potential and self expression (Lefebvre, Cloutier, & Levert, 2008)

32. Community Integration • Persons with TBI are shown to be less integrated into community • Ability to cope with changes after injury in crucial in continuing community involvement. (more severe=less likely) • Individuals that are able to return to work report higher level of satisfaction • Perceived social support may have greater impact on well-being than effective support (Lefebvre, Cloutier, & Levert, 2008)

33. Community Integration • Research suggests that more than half of individuals who have had a TBI are not satisfied with their community integration. (Lefebvre, Cloutier, & Levert, 2008)

34. TBI and Employment • Nearly one third of individuals who sustain a TBI and require treatment are working age (15-55 years). • TBI often results in less efficient or skilled work, which can lead to career transfer, reassignment, or termination. (Power, & Hershenson, 2003)

35. TBI and Employment • A survey of individuals with previous TBI found that 70% left their job due to cognitive and physical impairments while 10% were fired or laid off. Only 2% retained their pre-injury positions while the remaining 98% changed employment or withdrew from the job market. (Power, & Hershenson, 2003)

36. TBI and Employment • TBI can result in ambivalence, low motivation to return to work, and decreased confidence in work-related skills, which can interfere with successful employment. • TBI can result in decreased stress tolerance and interpersonal difficulties that interfere with employment. (Power, & Hershenson, 2003)

37. TBI and Employment • Employment has been found to be a predictor of quality of life in individuals following TBI. • Social support, including vocational rehabilitation, have been found to contribute to successful employment following TBI. • Involvement in post-injury employment or vocational rehabilitation to train for employment have been correlated to higher self-esteem. (Power, & Hershenson, 2003)

38. Family Caregivers • Primary caregivers after TBI are typically family members, and 9 out of 10 individual are released in to the care of immediate family. • Assistance with: • Activities of daily living • Appointments • Managing medications • Finances • Arrange social and recreational activities • Primary source of emotional support (Kreutzer, Stejskal, Ketchum, Marwitz, Taylor, & Menzel, 2009)

39. Family Caregivers • Families are often not prepared to change employment status, financial status or recreational activities to meet needs of the individual with TBI. • Family’s ability to cope has been linked to quality of social support they provide and to the degree of the TBI survivor’s neurobehavioral recovery (Kreutzer, Stejskal, Ketchum, Marwitz, Taylor, & Menzel, 2009)

40. Caregiver Burden • Female spouses of individuals with TBI have the greatest risk of difficulties related to caregiver burden. • Burden is influenced by cognitive, communication, physical, behavioral, incontinence, and sexual problems, personality changes, and loss of income, transportation, time and resources to medical and therapy demands. (McCabe, Lippert, Weiser, Hilditch, Hartridge, & Villamere, 2007)

41. Caregiver Burden • Less social support and more severe behavioral problems of individuals with TBI is associated with higher caregiver distress and depression. • Caregiver beliefs about their own and the individual with TBI’s ability to manage problematic behaviors is associated with caregiver distress. (Riley, 2007)

42. Family’s Role in Support and Social Integration • Social life and family caregiver support have been linked to satisfaction with social integration. • Family provides a normalized social setting as well as psychological support. (Lefebvre, Cloutier, & Levert, 2008)

43. Family’s Role in Support and Social Integration • Household contribution and family interaction improves self image and feelings of acceptance after TBI. • Family helps connect to extended contacts. • Important for long term rehabilitation: • Physical assistance • Cognitive rehabilitation • Re-learning social skills • Compensation strategies (Lefebvre, Cloutier, & Levert, 2008)

44. Conclusions • TBI has major emotional, social, and occupational effects on individuals and families. • A common theme in research is that recovery outcomes, quality of life, and sense of well-being are predicated by quality of social support. • Individuals that maintain community integration, occupation, and social interaction demonstrate higher function and life satisfaction.

45. References • Arango-Lasprilla, J. C., Ketchum, J. M., Dezfulian, T., Kreutzer, J. S., O’Neil Pirozzi, T. M., Hammond, F., & Jha, A. (2008). Predictors of marital stability 2 years following traumatic brain injury. Brain Injury, 22 (7-8), 565-574. • Bay, E. H., Blow, A. J., & Yan, X. (2012). Interpersonal relatedness and psychological functioning following traumatic brain injury: Implications for marital and family therapists. Journal of Marital and Family Therapy, 38 (3), 556-567. • Dikmen, S., Machamer, J., & Temkin, N. (2009). Neurobehavioral Consequences of Traumatic Brain Injury. In I. Grant & K. M. Adams (Eds.), Neuropsychological Assessment of Neuropsychiatric and Neuromedical Disorders, 3rd Ed (597-617). New York: Oxford University Press, Inc.

46. References • Degeneffe, C. E., & Burcham, C. M. (2008). Adult sibling caregiving for persons with traumatic brain injury: Predictors of affective and instrumental support. Journal of Rehabilitation, 74 (3), 10-20. • Douglas, J. M., & Spellacy, F. J. (2000). Correlates of depression in adults with severe traumatic brain injury and their carers. Brain Injury, 14(1), 71-88. • Goverover, Y., Johnston, M. V., Toglia, J., & DeLuca, J. (2007). Treatment to improve self-awareness in persons with acquired brain injury. Brain Injury, 21 (9), 913-923.

47. References • Izuate, M., Durozard, C., Aldigier, E., Teissedre, F., Perreve, A., & Gerbaud, L.(2008). Perceived social support and locus of control after a traumatic brain injury (TBI). Brain Injury, 22 (10), 758-764. • Kreutzer, J. S., Stejskal, T. M., Ketchum, J. M., Marwitz, J. H., Taylor, L. A., & Menzel, J. C. (2009). A preliminary investigation of the brain injury family intervention: Impact on family members. Brain Injury, 23 (6), 535-547. • Lefebvre, H., Cloutier, G., & Levert, M. J. (2008). Perspectives of survivors of traumatic brain injury and their caregivers on long term social integration. Brain Injury, 22 (7-8), 535-543. • Lezak, M. D., Howieson, D. B., & Loring, D. W. (2004). Neuropsychological Assessment, 4th Ed. New York: Oxford University Press, Inc.

48. References • McCabe, P., Lippert, C., Weiser, M., Hilditch, M., Hartridge, C., & Villamere, J. (2007). Community reintegration following acquired brain injury. Brain Injury, 21 (2), 231-257. • McCauley, S. R., Boake, C., Levin, H. S., Contant, C. F., & Song, J. X. (2001). Postconcussional disorder following mild to moderate traumatic brain injury: Anxiety, depression, and social support as risk factors and comorbidities. Journal of Clinical and Experimental Neuropsychology, 23(6), 792-808. • National Institute of Neurological Disorders and Stroke (2013). Traumatic brain injury: Hope through research. Retrieved fromhttp://www.ninds.nih.gov/disorders/tbidetail_tbi.htm.

49. References • Neumann, D. R., Zupan, B., Babbage, D. R., & Willer, B. (2007). Overview of impaired facial affect recognition in persons with traumatic brain injury. Brain Injury, 21 (8), 807-816. • Power, P. W., & Hershenson, D. B. (2003). Work adjustment and readjustment of persons with mid-career onset traumatic brain injury. Brain Injury, 17(12), 1021-1034. • Prigatano, G. P., & Maier, F. (2009). Neuropsychiatric, Psychiatric, and Behavioral Disorders Associated with Traumatic Brain Injury. In I. Grant & K. M. Adams (Eds.), Neuropsychological Assessment of Neuropsychiatric and NeuromedicalDisorders, 3rd Ed (618-631). New York: Oxford University Press, Inc.

50. References • Rao, V., Rosenberg, P., Bertrand, M., Salehinia, S., Spiro, J., Vaishnavi, S., . . . Miles, Q. S. (2009). Aggression after traumatic brain injury: Prevalence and correlates. The Journal of Neuropsychiatry and Clinical Neurosciences 21(4), 420-429. • Riley, G. A. (2007). Stress and depression in family carers following traumatic brain injury: the influence of beliefs about difficult behaviours. Clinical Rehabilitation, 21, 82-88. • Stålnacke, B. M. (2007). Community integration, social support, and life satisfaction in relation to symptoms 3 years after mild traumatic brain injury. Brain Injury, 21 (9), 933-942.