Transcript Novel Approaches to Promoting Community Integration after TBI

Novel Approaches to Improving
Community Integration after
Traumatic Brain Injury
Angelle M. Sander, PhD
Baylor College of Medicine
The Institute for Rehabilitation and Research
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)
Collaborators
Margaret A. Struchen, Ph.D.
Karen A. Hart, Ed.D.
Sunil Kothari, M.D.
Learning Objectives
• Describe community integration in a
comprehensive way.
• Describe aspects of community integration
that have been neglected by traditional
research and clinical treatments.
• Describe one novel method that can be used
to help persons with injury to integrate
better into their homes and communities.
Mission of RRTC on
Community Integration
• That all those affected by TBI, including
traditionally underserved populations, have
access to information, resources, and
services that maximize participation in their
communities and that treating professionals
have the necessary information to meet the
needs of persons with TBI
Mission of RRTC on
Community Integration
• That all areas of community integration,
including traditionally underemphasized
areas such as friendship, intimacy, and
creative expression, be addressed.
• That attitudinal barriers to community
integration of persons with TBI be reduced.
Mission of RRTC on
Community Integration
• That new types of partnerships, such as
those with the larger disability community,
be established in order to empower persons
with TBI to have a voice in creating
community services and networks to
facilitate maximal community participation.
Why the focus on
Community Integration?
• Advances in acute care medicine=higher
survival rates after TBI
• Changes in the health care climate=shorter
lengths of stay in rehabilitation
• Persons with TBI are being discharged with
greater disability.
• Persons are being cared for in the
community.
What is
Community Integration?
• Independence
• Relationships
• Meaningful activities to engage in
“having something to do, somewhere to live,
and someone to love.” (Jacobs, 1993)
What Is
Community Integration?
“the assumption or resumption of culturally
and developmentally appropriate social
roles following disability” (Corrigan, 1994)
Decreased Role Functions
After TBI
• High incidence of unemployment
• Decreased independence (financial,
transportation, supervision, decision
making)
• Decreased social network size
• Decreased intimacy
• Decreased participation in leisure activities
Comprehensive View of
Community Integration
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)
Important Roles in
Our Culture (Prigatano, 1996)
• Work
• Love
• Play (includes leisure and creativity)
These roles are symbols of normality and
allow individuals to feel part of the larger
community.
Social and Emotional
Impact of TBI
• Research shows decreased social network
size and loss of pre-injury friendships.
• Loneliness has been reported as one of the
greatest difficulties for persons with TBI.
• Family primary source of social and leisure
activity for many persons with TBI.
Social and Emotional
Impact of TBI
• Persons with moderate to severe TBI
reported close relationships with others as a
key component of community integration.
Persons who perceived their integration as
negative most often mentioned a decrease in
relationships as the reason (McColl et al.,
1998)
Much of rehabilitation focuses on work or
return to some type of productive activity.
There is little emphasis on love and play, in
spite of the fact that many persons with TBI
never resume employment. For these
people, love and play may be especially
important.
Role of the Environment in
Community Integration
The New Paradigm of Disability (Social
Model): Disability is determined by an
interaction between the person and the
environment. Disability is an individual
difference that does not intrinsically lead to
reduced integration and/or life satisfaction,
but becomes an obstacle when the attitudes
of society result in devaluing or exclusion.
Tate & Pledger, 2003
Elements of a Novel Approach
to Community Integration
• A comprehensive view of community integration,
with assessment of individual priorities and values
(including social and leisure)
• An emphasis on personal choice and
empowerment
• An emphasis on sustainability beyond the
rehabilitation setting into the community
• An emphasis on changing the environment to
maximize integration
Novel Approaches to Improving
Community Integration
• Home-based rehabilitation
• Training family and community members as
paraprofessionals
• Peer support programs
– Social activities
– Workplace
• Partnerships with community organizations to
increase understanding of TBI and open
opportunities
Home-Based Rehabilitation
“To me, community-based services are
services provided where people live in
the community. And where are people
found most naturally in the
community? They are in their
homes….”
Lex Frieden
John Stanley Coulter Memorial Lecture
2002
What Is Home-Based
Rehabilitation?
• Does not equal traditional home health
services.
• Means providing the full range of
rehabilitation that would be offered in an
acute or post-acute program in the home,
including interdisciplinary goal setting and
therapies.
• Intensity of therapy varies according to
clients’ goals and abilities.
Potential Advantages of
Home-Based Rehabilitation
• May result in greater generalization by training
clients in their own environments using real-world
tasks
• May result in greater sustainability by directly
involving caregivers
• May reduce burden on families in regard to
transportation and may decrease no-show rates
• May be more cost-effective
Disadvantages of
Home-Based Rehabilitation
• Time involved in travel to home
• Potential “discoordinating” effect on the
interdisciplinary team
• Reliance on caregivers- problem for caregivers
who are difficult to train and for clients who do
not have caregivers that can be involved.
• 3rd party reimbursement for services
Research Evidence for
Effectiveness of
Home-Based Rehabilitation
• Smith & Godfrey (1995) compared a group of
persons receiving home-based cognitivebehavioral treatment to a matched historical
control group. Family members were taught
specific strategies to ameliorate cognitive and
behavioral difficulties. Caregivers in the treatment
group showed a decrease in symptom-related
distress and the persons with TBI showed reduced
time to become aware of their difficulties.
Research Evidence for
Effectiveness of
Home-Based Rehabilitation
• Pace & colleagues (1999) found that in 77 persons
with brain injury, a home-, school-, or work-based
interdisciplinary rehabilitation program resulted in
successful accomplishment of therapy goals and in
good family and funder satisfaction.
• Boman and colleagues (2004) in Sweden used a
pre-post design to evaluate the effectiveness of inhome cognitive training for 10 persons with mild
to moderate TBI. Results showed improvement on
attention tasks assessed, but not on activities and
participation.
Is Home-Based
Rehabilitation Effective?
• Is promising, but awaits results of controlled
studies with interdisciplinary approach.
• Need cost-effectiveness studies to sell idea to 3rd
party payers.
• Need to identify persons in community that can be
used as paraprofessionals to help train.
• Need to study the feasibility of training family
members.
Training Family Members
as Paraprofessionals
• Many persons with TBI do not have access to
rehabilitation services, either for financial reasons
or because they live in areas that are not served.
• Family members are the sole source of support for
a majority of persons with TBI.
• Family members have first-hand knowledge of
functional needs and environmental obstacles
and/or supports.
• Training family members could result in
sustainability of rehabilitation goals.
RRTC Project on Training Family
Members as Paraprofessionals
• 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.
RRTC Project on Training Family
Members as Paraprofessionals
• 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
RRTC Project on Training Family
Members as Paraprofessionals
• 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
RRTC Project on Training Family
Members as Paraprofessionals
• 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
RRTC Project on Training Family
Members as Paraprofessionals
• 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
RRTC Project on Training Family
Members as Paraprofessionals
– 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 Spanishspeaking therapist as needed.
RRTC Project on Training Family
Members as Paraprofessionals
• 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
Peer Supports
• Social Peer Mentors
– While persons with TBI generally show
improvements in social integration after
participation in post-acute rehabilitation, a large
proportion show decreased social integration at
follow-up periods (Sander et al., 2001; Seale et al., 2002).
– Peer mentoring has been successful at
improving social integration in children with
disabilities.
Social Peer Mentors
• Differs from traditional peer mentor
programs in that the primary purpose is to
expand the social network of the person
with injury rather than to provide other
types of assistance (e.g., providing
education about TBI resources, support in
adjustment to disability, etc.)
Social Peer Mentors
• Johnson & Davis (1998) matched 3 persons
with TBI with 4 community participants
who did not have TBI. They engaged in
leisure activities together once per week for
4 weeks. Persons with TBI showed
increased # of social contacts at the end of
the 4 weeks and at an 8-week follow-up.
RRTC Project on
Social Peer Mentoring
• Purpose
– To develop and utilize a social mentor peer
partnering program to improve social
integration and social activity levels for persons
with mild, moderate, and severe TBI.
RRTC Project on
Social Peer Mentoring
• Participants
– Persons with mild, moderate, and severe TBI
recruited from TIRR in Houston and from the
Transitional Learning Center in Galveston, TX
– Potential participants will be screened to
determine if they would serve as mentors or
mentees. Mentors must have a CHART Social
Integration score of 100
RRTC Project on
Social Peer Mentoring
• Persons classified as mentees will be
randomized to either an active peer support
program (for 4 months with at least one
outing per month) or a wait-list control
group (eligible to receive mentorship after a
6-month period).
• All mentors will undergo an extensive
training process and will receive a mentor
manual with rules and responsibilities.
RRTC Project on
Social Peer Mentoring
• Outcome measures (pre- and post-test):
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Weekly social activity surveys
Social Network Inventory (assesses network size)
CES-D Depression Scale
UCLA Loneliness Scale
6-Item Interpersonal Support Evaluation List
Satisfaction With Life Scale
Administered at end of program and at 6-month
follow-up
Peer Mentoring
in the Workplace
• Job coaching has been widely used to facilitate
return to work after TBI (Wehman, Kreutzer et
al.)
• Job coaches traditionally train the person with
injury in the job tasks to be done, help them to
develop compensatory strategies, and work
with them to complete assigned duties. They
typically “fade out” as the person can complete
duties independently
Peer Mentoring
in the Workplace
• Job coaches have traditionally not focused on
facilitating social integration in the workplace.
• The use of a job coach may actually have a
negative impact on the person’s social
integration into the workplace.
– Others see them as different, needing an expert to
work with them.
– Training is often conducted in isolation from other
workers.
Peer Mentoring
in the Workplace
– Training is often limited to discrete tasks that do
not give the worker a sense of how they contribute
to the whole.
– Trainees often miss the “social hours” that
informally happen in a workplace.
• Wehman (1976) recommended including coworkers in the process of training and fading.
Peer Mentoring
in the Workplace
• Hagner (1992) suggested a model in which a
professional serves as a consultant to a
business to assist them in integrating the
person with disability into the workplace.
• Recommends going through social channels to
obtain jobs, as many of us do. Often,
increasing participation in community social
activities is seen as a first step.
Peer Mentoring
in the Workplace
• Use other employees to “show them the ropes”
and help these other employees to understand
how the person would learn best.
• Place them in proximity to workers who
perform similar duties and try to overlap duties
as much as possible.
• While they may require extra breaks, some
breaks should be scheduled when other
employees typically take breaks.
Creative Expressions Center
• Purpose:
– To bring together community artists and
persons with TBI at organized classes using a
variety of artistic mediums in an effort to
provide opportunities for creative expression,
improve life meaning and satisfaction, and
reduce social isolation and loneliness.
Creative Expressions Center
• Participants:
– Persons with TBI recruited from medical center
hospitals and rehabilitation facilities, the
community (via web pages), and local TBI
organizations.
– Artists associated with the Orange Show of
Houston, an umbrella organization for
individual artists whose mission is to promote
the artistic expression of ordinary people.
Creative Expressions Center
• Classes are offered in 6-month blocks of 3
• Choice of classes to be offered is made
based on interests of those to be served.
• Classes will be no more than 10 people
each.
• Therapists (physical, occupational,
recreational) with experience in TBI are
available to assist the artists in working with
participants.
Creative Expressions Center
• Classes offered thus far have included:
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Mosaics
Drums
Creative Movement
Creative Writing
Painting Dance
Photography
Writing/Filming
Collage/Mixed Media
Center for Creative Expression
for Persons with TBI
Center for Creative Expression
for Persons with TBI
Summary
• Community integration should be defined in a
comprehensive way, and rehabilitation should
address all aspects that are important to the
person.
• To increase sustainability, the use of peer
mentors and natural supports is encouraged.
– Training of family members
– Social peer mentors
– Peer mentors in the workplace
Summary
• To increase sustainability, treatments would
best be delivered in the environments where
activities would be conducted (e.g., home,
work, school).
• Creating partnerships with organizations in the
community can help to increase integration
and develop meaning for persons with injury.
• Research support for the effectiveness of these
methods is needed.
TIRR RRTC
on Community Integration
for Persons With TBI
www.tbicommunity.org
[email protected]