Traumatic Brain Injury

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., Wernickes 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 severeless 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.
• Familys ability to cope has been linked to
  quality of social support they provide and to the
  degree of the TBI survivors 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 TBIs ability to manage
  problematic behaviors is associated with
  caregiver distress.
• (Riley, 2007)

42
Familys 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
Familys 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., ONeil Pirozzi,
  T. M., Hammond, F., Jha, A. (2008). Predictors
  of marital stability 2 years following traumatic
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• Bay, E. H., Blow, A. J., Yan, X. (2012).
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• Dikmen, S., Machamer, J., Temkin, N. (2009).
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46
References

• Degeneffe, C. E., Burcham, C. M. (2008). Adult
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47
References

• Izuate, M., Durozard, C., Aldigier, E.,
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References

• McCabe, P., Lippert, C., Weiser, M., Hilditch,
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49
References

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50
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