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Issues in Developmental Disabilities Traumatic Brain Injury Families of Persons with TBI

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Title: Issues in Developmental Disabilities Traumatic Brain Injury Families of Persons with TBI


1
Issues in Developmental Disabilities Traumatic
Brain Injury Families of Persons with TBI
  • Lecture Presenter
  • Charles Degeneffe, Ph.D. 

2
Video of Dr. Degeneffe
3
Initial Family System Impacts Following TBI
  • Anxiety
  • Shock
  • Disbelief
  • Denial
  • Frustration

4
Individual Family Member Reactions
  • Parents
  • Face an extended parenthood
  • May try to fix pre-injury problems
  • Other family relationships and needs become
    secondary priorities

5
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

6
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

7
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

8
Economic Necessity of Family Caregiving
  • Why do families provide so much care?

9
Economic Necessity of Family Caregiving
10
Economic Necessity of Family Caregiving
11
Types of Care Families Provide
  • Comprehensive
  • Activities of daily living
  • Monitoring medications
  • Managing challenging behaviors
  • Responding to alcohol and drug use
  • Service coordination
  • Advocacy

12
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

13
Research
  • What are families actually experiencing when they
    provide this ongoing care and support?

14
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

15
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

16
A Lifespan Perspective
  • Anecdotally, its 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

17
Degeneffe Research Question
  • Is this lifespan perspective actually accurate?

18
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

19
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 parentswho 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 dont know if this
    will be possible. I also worry about the needs of
    my TBI brother, what will his future needs be?

20
On Changes to the Family
  • Our family has become much closer since my
    brothers 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.

21
On Concerns for the Future
  • I dont really remember life before my
    brothers accident. Its hard to cope at times,
    but we survive. I look at life differently
    nowmore compassionate towards disabled people. I
    tend to push people to thrive for better livesas
    my brothers seems to be hopelessI continue to
    be helpful for him.

22
Support
  • What can social workers do to support siblings?

23
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

24
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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