Transcript Families of Persons with Traumatic Brain Injury

Issues in Developmental Disabilities
Traumatic Brain Injury
Families of Persons with TBI
Lecture Presenter:
Charles Degeneffe, Ph.D.
Video of Dr. Degeneffe
Initial Family System Impacts
Following TBI
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Anxiety
Shock
Disbelief
Denial
Frustration
Individual Family Member
Reactions
Parents
 Face an extended parenthood
 May try to fix pre-injury problems
 Other family relationships and needs
become secondary priorities
Individual Family Member
Reactions
Spouses and Intimate Partners
 Adjustment to living with someone different
from pre-injury personality and behavior
 Make health care and rehabilitation
decisions
 Face an ascribed single parent status
 May stay in relationship out of concern
Individual Family Member
Reactions
Children
 May have to do extra chores around
house
 Can act as a surrogate parent to
younger children
 May feel anger and embarrassment
toward injured parent
Individual Family Member
Reactions
Siblings
 Can feel neglected by parents
 Assume different roles in the family
 As adults, may be concerned about
their long-term care responsibilities
Economic Necessity of Family
Caregiving
Why do families provide so
much care?
Millions
Economic Necessity of Family
Caregiving
10
9
8
7
6
5
4
3
2
1
0
7
5
2.5
Traumatic brain Schizophrenia
injury
Mental
retardation
Economic Necessity of Family
Caregiving
Per person spending FY 98
TBI versus MR
$50,000
Cost
$40,000
$30,000
$20,000
$10,000
$0
Traumatic brain injury
Mental retardation
Types of Care Families Provide
Comprehensive
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Activities of daily living
Monitoring medications
Managing challenging behaviors
Responding to alcohol and drug use
Service coordination
Advocacy
Impacts on Families
Backgrounds of persons with TBI
 “Vulnerable families”
 African-American and other persons
with color
 Learning Disabilities
 Treatment for emotional problems
 Alcohol and other drug use
Research
What are families actually
experiencing when they
provide this ongoing care
and support?
Research Outcomes
 Focus on primary caregiver (often mothers
and wives)
 Look at one moment in time and based on
White, middle class families
 Initial studies based on anecdotal evidence
and lack of standardized measurements
 Examine the correlates of a negative
outcome such as depression or anxiety
 Overall, effects of TBI are negative and
does not lessen with time
Factors Related to Family Caregiver
Outcomes
Female status
Pre-injury psychopathology
Balanced cohesion
Use of positive appraisal and family tension
management
 Availability of social support
 Financial resources
 The severity of injury not related to postinjury outcomes
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A Lifespan Perspective
 Anecdotally, it’s believed family caregiving
extends over the lifespan
 Lifespan caregiving has been demonstrated
in families of persons with developmental
disabilities
 “A Study on Siblings of Persons with TBI”
Degeneffe Research Question
Is this lifespan perspective
actually accurate?
A Study on Siblings of Persons with TBI
 208 siblings mostly from the Midwest
 The majority of siblings were female,
married, had a high level of education, and
were White
 The average distance between the injured
non-injured siblings was 175 miles
 Open-ended responses reflected a lifetime
commitment to their injured brothers and
sisters
On Concerns for the Future
“I am the oldest sibling and the only one
living in the same city as my brother who has
TBI. I have just started a family, my
parents—who have been the primary
caregivers, are getting older. What will be my
role??? I will become the primary caregiver
when my parents cannot. I worry how this
will affect “my” family. I would like my other
brother and sister to assume some
responsibility as well, but I don’t know if this
will be possible. I also worry about the needs
of my TBI brother, what will his future needs
be?”
On Changes to the Family
“Our family has become much closer since
my brother’s TBI. When someone is taken
from you suddenly, you want to hold on to
the family members you have. I have
grieved the loss of my brother for that man
will never be again. I have hope for who is
laying in a nursing home, but also believe
there are worse things than death. Our
family does well together. We often have to
be patient and understanding to those who
have different opinions and feelings. We are
all okay.”
On Concerns for the Future
“I don’t really remember life before
my brother’s accident. It’s hard to
cope at times, but we survive. I look
at life differently now—more
compassionate towards disabled
people. I tend to push people to
thrive for better lives—as my
brother’s seems to be hopeless—I
continue to be helpful for him.”
Support
What can social workers do to
support siblings?
How Families Cope
What families say they need from
professionals
 Honest and accurate information
 Direction, support, and respect
 Active and collaborative involvement
in the rehabilitation process
Types of professional services
 Supportive counseling and family
therapy
 Respite care
 Transitional housing and independent
living programs
 Vocational rehabilitation, including
supported employment