Transcript Novel Approaches to Promoting Community Integration after TBI

Novel Approaches to Promoting
Community Integration after TBI
Margaret A. Struchen, PhD
Angelle M. Sander, PhD
Karen A. Hart, PhD
This work was supported by funds from the National Institute on Disability and
Rehabilitation Research, Office of Special Education and Rehabilitative
Services, U.S. Department of Education. (Grant #: H133B031117)
What is
Community Integration?
• Independence
• Relationships
• Meaningful activities to engage in
“having something to do, somewhere to
live, and someone to love.” (Jacobs,
1993)
Community Integration
(Corrigan, 1994)
“the assumption or resumption of
culturally and developmentally
appropriate roles following disability.”
Evidence for Reduced
Community Integration
After TBI
• High rates of unemployment at 1 to 7
years after injury
• Majority of persons with TBI reside with
their families rather than independently
• Majority of persons with TBI are
financially dependent upon family
members
Successful integration should be
viewed as “active participation in a
broad range of community
involvements. It should not be
viewed as a narrow series of
opportunities, such as employment
or independent living.”
(Willer & Corrigan, 1994)
Importance of the
Environment for
Community Integration
New Paradigm of Disability (NIDRR, 2000)
– Disability is determined by an interaction
between the person and environment.
– The attitudes of society toward persons with
disability can result in decreased integration
through devaluing and exclusion.
– Efforts to improve community integration
should focus on changes in the environment
(preserves respect and dignity of person).
Community Integration
According to Persons With TBI
(McColl et al., 1998)
• Studied responses of 18 persons with
moderate to severe TBI to a community
integration interview
• All participants had been away from their
communities for at least 1 year to receive
treatment, and had recently returned.
Community Integration
According to Persons With TBI
(McColl et al., 1998)
• Do you feel like you are part of a community, like
you belong in your community?
– What kinds of things make you feel that way?
– What does it mean to be part of a community?
– What would need to happen to make you feel a part of
your community?
– What stands in the way of you feeling integrated and
comfortable in this community?
Community Integration
According to Persons With TBI
(McColl et al., 1998)
• General Integration
– Conformity: understanding what it takes to
fit in with others; knowing the rules
– Acceptance: being able to be yourself;
feeling like you’re no different than anyone
else
– Orientation: knowing where you are; not
feeling lost (e.g., knowing bus routes)
Community Integration
According to Persons With TBI
(McColl et al., 1998)
• Social Support
– Close relationships: intimate relationships
with spouse/significant other, parent, close
friends
– Diffuse relationships: non-intimate
relationships, such as people in the
neighborhood, people driving the buses,
working in restaurants, etc.
Community Integration
According to Persons With TBI
(McColl et al., 1998)
• Occupation
– Productivity: activities such as
employment, education, and volunteer
work that enable them to have a sense of
purpose, structure to their day, economic
sufficiency, and respect from others
– Leisure: entertainment and relaxation
Community Integration
According to Persons With TBI
(McColl et al., 1998)
• Independent Living
– Independence/Self-determination: being
able to choose their own activities, such as
when they can leave the house
– Living Situation: choosing who to live with
and where to live
Community Integration
According to Persons With TBI
(McColl et al., 1998)
The aspect of community integration
common to the responses of all
participants was the importance of
meeting new people and making new
friends. They expressed the desire to
have people they could call on just to
have a cup of coffee or to chat.
Understudied Areas of
Community Integration
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Friendships
Intimacy
Creative Expression
Family Training
Attitudes and Environment
Friendships
• Social isolation is a major problem after TBI.
• Social network size decreases for many:
– 50% with moderate-severe TBI report having
few social contacts
– 30% with moderate-severe TBI report no social
contacts outside of the family.
• Pre-Injury friendships are often lost
• Loneliness often reported as one of the
most difficult problems after brain injury.
Friendships
• Having close and diffuse relationships
with others is an integral part of
community integration.
• The importance of relationships usually
comes up in discussion of community
integration among persons with
disability.
• Among persons with TBI, close
relationships was reported as key to
community integration.
Intimacy
• Establishing or maintaining satisfying intimate
relationship is one of the major challenges faced
by persons with TBI.
• Neurobehavioral and cognitive factors after TBI
are often cited as primary in relationship conflict
after injury.
• Social isolation of both the survivor and partner
are thought to contribute to stress that can
negatively affect personal relationships.
• Caregiving roles for partners can be somewhat in
conflict with the role of intimate partner.
Intimacy
• Research suggests that psychosocial issues
like intimacy and sexuality are either not
addressed by professionals or are limited in
scope.
• Few studies have looked in detail at the
perspectives of survivors or their significant
others on how intimacy is impacted after
brain injury.
• Better understanding of how negative,
positive, or neutral effects of the injury affect
intimate relationships is important.
Creative Expression
• Two of the key roles for individuals in our
culture are that of “work” and “love”; however,
“play” is a third key role.
• Play includes not only leisure activity, but also
creativity as both are important components
of a meaningful and fulfilling life.
• Creativity can assume a special role in the
lives of persons with TBI, especially when
other primary roles (work and relationships)
may be less easily available.
Creative Expression
• Creativity can be an alternate way of
finding meaning and fulfillment.
• Creative expression can offer persons
with TBI:
– sense of efficacy
– way to express self
– means of organizing and structuring their
own experience
– increased self-understanding
Family Training
• For persons with brain injury, the family is
often the main source of support for things
like transportation, finances, leisure, and
emotional support.
• Many post-acute rehabilitation programs
include the family through training and
therapy.
• Some programs also offer supportive
counseling for family members to help them
adjust to changes in roles after injury.
Family Training
• Only one study has looked at the
effectiveness of training family members to
implement cognitive rehabilitation strategies.
• Smith & Godfrey found that persons with TBI
who received help from family for cognitive
strategies had reduced time to become aware
of their difficulties as compared to a control
group, in spite of being equivalent with time
post injury, injury severity, and baseline
neuropsychological test performance.
Attitudes & Environment
• Community integration often includes the
assumption of “culturally and developmentally
appropriate social roles”.
• The very definition of community integration
includes the idea of societal expectations.
• However, it is recognized that societal expectations
and attitudes can be an obstacle to community
integration for persons with brain injury as well as
other disabilities.
• Understanding and then working to change
attitudinal barriers is a major goal for the brain
injury community.
Attitudes & Environment
• Other environmental variables that
affect community participation include:
– physical barriers
– social policies
– financial resources
– transportation access
– etc.
Novel Approaches
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Social Peer Mentoring
Center for Creative Expression
Increasing Community Awareness
Training Family Members as
Paraprofessionals
Social Peer Mentoring
• Peers helping peers to increase opportunities for
social activities and relationships.
• Peer mentoring has been used before, but has
tended to focus on helping with adjustment and in
accessing resources.
• Peer mentoring has been used to increase social
relationships and friendships in other groups.
Social Peer Mentoring
• One study (Johnson & Davis) looked at trying
to increase social activities for 3 individuals
with TBI by pairing them with individuals from
the community that did not have brain injury.
• All 3 individuals had increased social contacts
after the mentoring program and continued to
show increased social activities 8 weeks after
the program
Social Peer Mentoring
• Social Peer Mentoring program will
modify this approach by using peers as
mentors to increase social activities for
their partners who request assistance
with improving socialization.
• Mentors will be individuals with brain
injury who have been successful in
resuming or developing new social
relationships after their injuries.
Social Peer Mentoring
• Mentors will try to help their peer
partners obtain several skill areas to
improve social integration:
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Social Resources
Initiation/Planning
Transportation
Budget
Social Communication Skills
Social Peer Mentoring
• Mentoring Process
– Intake interview
– Baseline charting of social activities
– Peer mentoring for 4 month period
– Follow up 2 months after peer mentoring
– Follow up 6 months after peer mentoring.
Center for Creative Expression
for Persons with TBI
• This is a project to demonstrate:
– A center for creative expression can be
developed and used as a model.
– Community artists can be engaged.
– People with TBI will participate.
– The program adds meaning and increases
life satisfaction.
– The program impacts social isolation and
emotional issues.
Center for Creative Expression
for Persons with TBI
• Collaborators:
– The Institute for Rehabilitation and
Research (therapists)
– The Orange Show of Houston (artists &
supplies)
– The Houston Metropolitan Multi-Service
Center (space)
Center for Creative Expression
for Persons with TBI
• Class Schedule:
– 1 hour
– 12 weeks
– Twice a month
– New classes every 6 months
Center for Creative Expression
for Persons with TBI
• Current Classes:
– Creative Dance and Movement
– Drums
– Mosaics
Center for Creative Expression
for Persons with TBI
Center for Creative Expression
for Persons with TBI
Center for Creative Expression
for Persons with TBI
Center for Creative Expression
for Persons with TBI
Center for Creative Expression
for Persons with TBI
• Next Classes (beginning Sept. 21, 2004):
– Painting
– Creative Writing
– Dance from Within
Increasing Community Awareness
of TBI and Attitudinal Barriers
• Development of Educational Packets
– Video
– Audio
– Written Materials
Increasing Community Awareness
of TBI and Attitudinal Barriers
• English and Spanish
• For Adults and Children of Adults
with TBI
Increasing Community Awareness
of TBI and Attitudinal Barriers
• This is a project to demonstrate:
– Information from an educational packet
increases knowledge about TBI.
– Increased knowledge about TBI
improves attitudes about individuals
with TBI.
Increasing Community Awareness
of TBI and Attitudinal Barriers
• Year 1: Focus groups
– Persons with TBI, families, children of parents or
siblings with TBI
• Year 2: Develop and review materials for
adults.
• Year 3: Develop and review materials for
children.
• Years 4 & 5: Distribution and Assessment
Family Members As Paraprofessionals:
Use of Distance Learning To Train
Family Members in Rural Areas
• Rationale:
Cognitive rehabilitation has been shown to be
successful for improving functioning in persons with
TBI. In spite of the high incidence of TBI in rural
areas, there is a lack of rehabilitation resources
available for persons in these regions. Family
members are in a unique position to assist the
person with injury in developing cognitive strategies
and making environmental changes to improve
functioning.
Family Members As Paraprofessionals:
Use of Distance Learning To Train
Family Members in Rural Areas
• Purpose:
To develop and evaluate the impact of a
distance learning program to train family
members in rural communities to provide
cognitive rehabilitation, including
environmental modifications, for their
family members with injury.
Family Members As Paraprofessionals:
Use of Distance Learning To Train
Family Members in Rural Areas
• Participants:
– persons with medically documented TBI and
their family members who are consecutively
admitted to the inpatient rehabilitation unit at
Northwest Texas Hospital in Amarillo, TX
– NWTH serves the top 23 counties in the
Texas panhandle, including the border
regions of Colorado, New Mexico, Kansas,
and Oklahoma
Family Members As Paraprofessionals:
Use of Distance Learning To Train
Family Members in Rural Areas
• Participants
– under-served population with minimal
access to comprehensive inpatient or
outpatient rehabilitation services
– primarily White and Hispanic persons from
low education and low SES backgrounds
Family Members As Paraprofessionals:
Use of Distance Learning To Train
Family Members in Rural Areas
• Assessment and Delivering of Intervention
– Family members will be assessed in their
homes within 2 weeks of discharge from the
hospital.
– Based on their needs, they will be assigned to
certain educational modules.
– All educational modules will be delivered by a
neuropsychologist in Houston via
videoconferencing. The family members will
attend the conferences at West TX A&M U
Family Members As Paraprofessionals:
Use of Distance Learning To Train
Family Members in Rural Areas
• The following modules will be offered in 6week blocks:
– General education About TBI and typical
problems
– Coping with impaired awareness
– Compensating for memory and attention
difficulties
– Compensating for problems with language
and social skills
Family Members As Paraprofessionals:
Use of Distance Learning To Train
Family Members in Rural Areas
– Compensating for problems with initiation
and organization
– Compensating for problems with emotions
and controlling behavior
All modules have been translated into
Spanish and will be conducted by a
Spanish-speaking therapist as needed.
Family Members As Paraprofessionals:
Use of Distance Learning To Train
Family Members in Rural Areas
• Follow-Up Assessment
– will take place one month after completion of
prescribed modules
– will include measures of injury-related
problems, level of supervision required,
community integration, and caregiver stress
RRTC on Community Integration of Persons with TBI
How Can You Get Involved?
How can you become
involved?
• Sign up to receive our newsletter
and other mailings:
– Name
– Mailing Address
– E-mail address
How can you become
involved?
• Check out our website:
www.tbicommunity.org
– Click on the button “How Can I
Get Involved?” on the website.
– E-mail or phone us with your
comments and questions.
How can you become
involved?
• Peer Mentoring:
– Sign up today if you are interested in being
a peer mentor or would like to have a peer
mentor.
– Contact us via e-mail about your interest.
How can you become
involved?
• Center for Creative Expression
– Sign up for more information about
upcoming classes.
– Contact us about your preferences for
class topics for future classes.
How can you become
involved?
• Give Input for Developing
Community Educational Materials:
– Sign up to participate in focus groups today
and tomorrow during the conference.
– Do the focus group survey online.
– Contact us about doing a telephone focus
group.
How can you become
involved?
• Give Input for Family Training
Modules:
– Sign up to be contacted to provide
feedback.
– E-mail us on our website.
How can you become
involved?
• How to contact “us”?
– Terri Hudler-Hull
• E-mail: [email protected]
• Telephone: (713) 797-5947
• Mailing address: TIRR, 1333 Moursund,
Houston, TX 77030
• Website: www.tbicommunity.org