Redefining the Self

1
Redefining the Self

• Issues Impacting Quality of Life in Survivors of
• Acquired Brain Injury

2
Presenters

• Michael Fraas, PhD Assistant Professor
• Margaret Calvert, BS Graduate Student
• Department of Communication Sciences and
  Disorders
• University of New Hampshire

3
Learning Objectives

• Participants will be able to
• Discuss the use of narratives in the recovery of
  ABI.
• Identify factors that contribute to
  successful/unsuccessful community integration
  enhanced QOL for survivors of ABI.
• Report the impact of narratives in changing
  attitudes and beliefs of clinicians working with
  survivors of ABI.
• Report the potential benefits of community-based
  programming
• to increase community integration and enhance
  QOL.

4
Why Narratives?

• Help promote a sense of community within
  survivors
• Act as an educational tool for health
  professionals to eliminate stereotypes that may
  limit effective treatment.
• Educate the public and eliminate misconceptions.
• Determine survivor needs and highlight factors
  that contribute to their quality of life.

5
Why Narratives?

• Narratives are rooted in our practice
• Diagnostic process
• Contribution to clinical relationships (Hinckley,
  2008)
• Address psychosocial and health concerns that may
  be ignored in traditional medical encounters
  (Beach, 2004)
• Reaffirmation of clinical decision making

6
SteppingStones
Mission dedicated to improving the lives of
people living with brain injury from trauma,
tumor or stroke.
http//nhpr.org/node/13586
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Oral History Project

• Steppingstones members
• People living with traumatic brain injury,
  stroke, tumor, seizure disorders, and MS.
• Currently includes stories from 34 members
• Questions
• Address experiences pre- post- injury.
• Highlights from TKBIF Oral History
• www.krempelsfoundation.org/oralhistories.shtml

8
Thematic Analysis

• Qualitative methodology (Seidman, 1998)
• 4 case studies
• Steve, David, Barbara, Robert
• Purpose
• Factors contributing to a productive life
• Impact of community-based, post-rehabilitation
  program on the lives of survivors

9
Major Themes Identified

• Development of support networks
• Coping with emotional issues
• Acceptance of injury/redefinition of self
• Empowerment

10
Social Networks/Support

• Play important role in long term success
• Strained relationships

• Sense of gratitude
• The families needs

• Other friends I dont like to talk to.
  Most people dont understand aphasia. Im always
  scared that people think Im dumb. But Im not.
  They just dont understand about the aphasia. So
  I would rather not to talk with other people. It
  really upsets me. Sometimes with strangers it
  doesnt really bother me because Im never going
  to see them again. Who cares? (S.M.)

I am a huge fan of SteppingStones. I do
think there is something to knowing other people
who have had the same experiences and having
people of varying functioning levels to kind of
share with you their experiences. (B.W.)
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Coping Strategies

• I used to drink too much. I was not happy so I
  would drink. Now I do not at all. I dont want
  it because I dont want to be who I used to
  be. (S.M.)
• I thought for at least a year that I, um,
  everybody else, they were either faking or they
  were, um, it wasnt me and it was a dream or
  something is wrong with them. (D.H.)
• When I first came to SteppingStones I had so
  much anger and frustration and I couldnt speak
  much it was really hard. (R.B.)

• Emotions
• Secondary impacts
• Change in Coping Mechanisms
• Coping process
• Denial
• Anger
• Depression
• Acceptance

The emotions groups give you an opportunity to
express your thoughts and feelings. You can also
feel better knowing that others are going through
similar experiences. (S.M.)
12
Accepting the Injury,Redefining the self

• Letting go of the old self
• Role changes within
• Family Self Social Group

I will never go back to the old R.B.. That
R.B. died when they did the operation. Im a
whole new person, Im more able and more stronger
that I never thought I would get. (R.B.)

• I dont think it has probably been until the
  last month or so that I have really embraced the
  difficulties I still haveit took me almost three
  years to fully embrace and understand this is my
  life now. (B.W.)

13
Redefining The Self

• Long term adjustment
• Emotional components
• All of my thought processes were, oh, if Im
  disabled that means this whole slue of
  thingsThat means being weak that means being
  lazy. And understanding changing my perception
  and of what that means for me that has been a
  tremendous feat for me. Im still going through
  it. (B.W.)
• Social integration
• Goal setting
• I says I gotta do something. I mean I didnt
  expect thatI mean, I says what can we do? Look
  at the people, the people that came that just had
  a stroke and have aphasia. I want to start a
  foundation, so when we came to home we said lets
  do it. (D.H.)

14
Empowerment

• Developing a sense of independence
• Procuring employment
• I will never, quote, work. Its too hard for me
  because I get tired in the afternoon so I tried
  to work and um I wanted to be independent and Im
  really hard. I like to do hard work and stuff,
  but I now know my ability that I can do, not
  disability. But there is no job out there for me
  to have a normalish job. (R.B.)
• Driving
• For a year I didnt drive. That was horrible.
  I just really, I have always been a driver. As
  people know now that I have my license, I was
  never a passenger. I never liked other people
  driving I had no choice, I had to ask for help
  and not only that but asking for help but in the
  same breath being frustrated. (B.W.)
• The need to give back
• SteppingStones has helped me so much. Im so
  grateful to be here and would gladly be here to
  support anyone else who needs support. (B.W.)

15
Changing Attitudes/Beliefs

• Participants (87)
• SLPs (27)
• CSD Grad students (21)
• CSD UG students (39)
• 10 item questionnaire
• Assessed ABI issues
• Results
• SLP- social/vocational
• Grads- Language/Cognition
• UGs- all issues

Fraas, M. Calvert, M. (2007). Oral histories
Bridging misconceptions and reality in brain
injury recovery. Disability and Rehabilitation,
29 (18) 1449-1455.
16
Impact on the General Public

• Misconceptions about ABI abound (Hux, et al.,
  2006)
• Media may contribute
• Stories from survivors may be help to break down
  misconceptions about
• Recovery process
• Community integration
• (Fraas Williams, 2007)

17
Conducted Research

• Fraas, M. Balz, M. (In Press). Meeting the
  long-term needs of adults with acquired brain
  injury through community-based programming. Brain
  Injury.
• Fraas, M. Calvert, M. (2007). Oral histories
  Bridging misconceptions and reality in brain
  injury recovery. Disability and Rehabilitation,
  29 (18) 1449-1455.
• Fraas Calvert (2006). Stories from a silent
  epidemic. ASHA Leader, November.
• Fraas Steere (2007). Social communication and
  quality of life following acquired brain injury.
  ASHA Convention.
• Fraas Williams (2007). Assessing methods for
  educating the general public about brain injury.
  ASHA Convention.
• Poster session 1-230 CC Hall B2.

18
Thanks

• The Krempels Brain Injury Foundation
• Members of SteppingStones
• Beaumont Foundation of America
• University of New Hampshire,
• Vice President for Research and Public Service

19
SteppingStones The Movie

• mms//bbvideo.unh.edu/content/fraas/101305stepping
  tones.wmv

20
References

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  Bridging misconceptions and reality in brain
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