Novel Approaches to Promoting Community Integration after TBI

1
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)
2
What is Community Integration?

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

3
Community Integration(Corrigan, 1994)

• the assumption or resumption of culturally and
  developmentally appropriate roles following
  disability.

4
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

5

• 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)

6
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).

7
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.

8
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?

9
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 youre no different than anyone else
• Orientation knowing where you are not feeling
  lost (e.g., knowing bus routes)

10
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.

11
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

12
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

13
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.

14
Understudied Areas of Community Integration

• Friendships
• Intimacy
• Creative Expression
• Family Training
• Attitudes and Environment

15
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.

16
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.

17
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.

18
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.

19
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.

20
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

21
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.

22
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.

23
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.

24
Attitudes Environment

• Other environmental variables that affect
  community participation include
• physical barriers
• social policies
• financial resources
• transportation access
• etc.

25
Novel Approaches

• Social Peer Mentoring
• Center for Creative Expression
• Increasing Community Awareness
• Training Family Members as Paraprofessionals

26
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.

27
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

28
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.

29
Social Peer Mentoring

• Mentors will try to help their peer partners
  obtain several skill areas to improve social
  integration
• Social Resources
• Initiation/Planning
• Transportation
• Budget
• Social Communication Skills

30
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.

31
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.

32
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)

33
Center for Creative Expression for Persons with
TBI

• Class Schedule
• 1 hour
• 12 weeks
• Twice a month
• New classes every 6 months

34
Center for Creative Expression for Persons with
TBI

• Current Classes
• Creative Dance and Movement
• Drums
• Mosaics

35
Center for Creative Expression for Persons with
TBI
36
Center for Creative Expression for Persons with
TBI
37
Center for Creative Expression for Persons with
TBI
38
Center for Creative Expression for Persons with
TBI
39
Center for Creative Expression for Persons with
TBI

• Next Classes (beginning Sept. 21, 2004)
• Painting
• Creative Writing
• Dance from Within

40
Increasing Community Awareness of TBI and
Attitudinal Barriers

• Development of Educational Packets
• Video
• Audio
• Written Materials

41
Increasing Community Awareness of TBI and
Attitudinal Barriers

• English and Spanish
• For Adults and Children of Adults with TBI

42
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.

43
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

44
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.

45
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.

46
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

47
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

48
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 AM U

49
Family Members As Paraprofessionals Use of
Distance Learning To Train Family Members in
Rural Areas

• 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

50
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.

51
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

52
How Can You Get Involved?
RRTC on Community Integration of Persons with TBI
53
How can you become involved?

• Sign up to receive our newsletter and other
  mailings
• Name
• Mailing Address
• E-mail address

54
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.

55
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.

56
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.

57
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.

58
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.

59
How can you become involved?

• How to contact us?
• Terri Hudler-Hull
• E-mail terrih_at_bcm.tmc.edu
• Telephone [phone]
• Mailing address TIRR, 1333 Moursund, Houston, TX
  77030
• Website www.tbicommunity.org