issues in developmental disabilities traumatic brain injury families of persons with tbi
Post on 31-Dec-2015
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Issues in Developmental Disabilities
Traumatic Brain InjuryFamilies of Persons with TBI
Lecture Presenter:
Charles Degeneffe, Ph.D.
Video of Dr. Degeneffe
Initial Family System Impacts Following TBI
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?
Economic Necessity of Family Caregiving
5
7
2.5
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Traumatic braininjury
Schizophrenia Mentalretardation
Millions
Economic Necessity of Family Caregiving
Per person spending FY 98 TBI versus MR
$0
$10,000
$20,000
$30,000
$40,000
$50,000
Traumatic brain injury Mental retardation
Cost
Types of Care Families Provide
Comprehensive
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 post-
injury outcomes
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
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