Novel Approaches to Improving Community Integration after Traumatic Brain Injury

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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)
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Collaborators

• Margaret A. Struchen, Ph.D.
• Karen A. Hart, Ed.D.
• Sunil Kothari, M.D.

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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.

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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

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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.

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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.

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Why the focus on Community Integration?

• Advances in acute care medicinehigher survival
  rates after TBI
• Changes in the health care climateshorter
  lengths of stay in rehabilitation
• Persons with TBI are being discharged with
  greater disability.
• Persons are being cared for in the community.

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What is Community Integration?

• Independence
• Relationships
• Meaningful activities to engage in
• having something to do, somewhere to live, and
  someone to love. (Jacobs, 1993)

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What Is Community Integration?

• the assumption or resumption of culturally and
  developmentally appropriate social roles
  following disability (Corrigan, 1994)

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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

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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)

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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.
  

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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.

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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)

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• 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.

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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

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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

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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

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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

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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.

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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

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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

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Research Evidence for Effectiveness of
Home-Based Rehabilitation

• Smith Godfrey (1995) compared a group of
  persons receiving home-based cognitive-behavioral
  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.

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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
  in-home cognitive training for 10 persons with
  mild to moderate TBI. Results showed improvement
  on attention tasks assessed, but not on
  activities and participation.

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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.

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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.

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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.

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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

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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

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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 AM U

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RRTC Project on Training Family Members as
Paraprofessionals

• The following modules will be offered in 6-week
  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

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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 Spanish-speaking therapist
  as needed.

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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

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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.

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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.)

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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.

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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.

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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

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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.

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RRTC Project on Social Peer Mentoring

• Outcome measures (pre- and post-test)
• 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

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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

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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 persons 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.

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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 co-workers in
  the process of training and fading.

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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.

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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.

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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.

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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.

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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.

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Creative Expressions Center

• Classes offered thus far have included
• Mosaics
• Drums
• Creative Movement
• Creative Writing
• Painting Dance
• Photography
• Writing/Filming
• Collage/Mixed Media

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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

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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.

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TIRR RRTC on Community Integration for Persons
With TBI
www.tbicommunity.org asander_at_bcm.tmc.edu