PowerPoint Document - Minnesota Brain Injury Alliance

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Brain Injury
& Social Support
Theresa Ascheman, B. A.
Doctoral Candidate in Clinical Psychology
Minnesota School of Professional Psychology
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.
Effects of TBI
• “TBI results in marked cognitive, psychosocial,
behavioral/emotional and physical deficits that impact
the individual, family and social relationships.”
Family role changes
Financial difficulties
(Arango-Lasprilla et al. 2008)
Emotional Effects:
• 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)
Emotional Effects:
• 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)
Emotional Effects:
• 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
(McCauley, Boake, Levin, Contant, & Song, 2001)
Emotional Effects:
• The prevalence of depression in caregivers
may be even higher than the estimated rate
in those with with TBI.
(Douglas & Speallacy, 2000)
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
• More than 3x greater risk of postconcussional disorder
for those diagnosed with PTSD at 3 months postinjury
(McCauley, Boake, Levin, Contant, & Song, 2001)
Emotional Effects:
• 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)
Emotional Effects:
• 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 newonset major depressive symptoms, poorer pre-and postinjury social functioning, and increased dependency in
activities of daily living secondary to TBI.
(Rao et al., 2009)
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
(Douglas & Spellacy, 2000)
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)
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)
Physical Effects
• Motor problems
• Mobility
• Personal care
• Activities of daily living
• Headache
• Nausea
• Fatigue
(Dikmen, Machamer, & Temkin, 2009; Prigatano, & Maier, 2009)
• 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)
Sensory Effects
• Sensory changes can contribute to cognitive
inefficiencies and emotional distress.
(NINDS, 2013)
• Visual and auditory deficits are likely to affect
• Tinnitus, hyperacusis, photophobia often discourage
individuals from engaging in social situations.
(Lezak, Howieson, & Loring, 2004)
• 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)
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
(Neumann, Zupan, Babbage, & Willer, 2007)
Affect Recognition
• Impaired affect recognition is associated
with difficulty in interpersonal relationships,
• Impaired expression of empathy
• Appearance of indifference to emotional
needs of others
• Socially inappropriate behavior
(Neumann, Zupan, Babbage, & Willer, 2007)
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
• Socially inappropriate comments
(Prigatano, & Maier, 2009)
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)
Psychosocial Effects:
Impaired Self- Awareness
• Research has found individual and group selfawareness training to be beneficial in successful
performance of ADLs following TBI.
• Training involves estimation of performance prior to
activity, corrective feedback, problem solving, and
• Family caregivers are important in promoting selfawareness.
(Goverover, Johnston, Toglia, & DeLuca, 2007)
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
(Izuate, Durozard, Aldigier, Teissedre, Perreve, & Gerbaud, 2008)
Social Support
• Researchers generally separate types of social
support into two groups:
• Instrumental
• Financial
• Physical care
• Task-oriented
• Expressive of Affective
Encouragement and Praise
(Degeneffe, & Burcham, 2008; Douglas & Spellacy, 2000)
Social Support
• The effect of social support has been
conceptualized in the research by two main
– Social support has an overall beneficial
regardless of stressful event
– Social support only improves wellbeing in
individuals who are under stress
(Douglas & Spellacy, 2000)
Perceived Social
• 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)
Perceived Social
• 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
(Bay, Blow, & Yan, 2012)
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)
• 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)
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
• “ . . . the satisfaction experienced by the
individual in their life situation, their
sense of community affiliation and their
self image.”
(Lefebvre, Cloutier, & Levert, 2008)
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)
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)
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)
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)
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)
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)
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)
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
Managing medications
• Arrange social and recreational activities
• Primary source of emotional support
(Kreutzer, Stejskal, Ketchum, Marwitz, Taylor, & Menzel, 2009)
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)
Caregiver Burden
• Female spouses of individuals with TBI have the
greatest risk of difficulties related to caregiver
• 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)
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)
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)
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)
• 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.
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