Promoting Community Integration for Persons with TBI: Research, Training, and Advocacy

1. Promoting Community Integration for Persons with TBI:Research, Training, and Advocacy Margaret A. Struchen, PhD Dept. PM&R, Baylor College of Medicine 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. Research, Training, & Advocacy • Research Focus: Traumatic brain injury • Acute care variables and relationship to outcome, assessment of social communication skills, interventions/programs to improve community integration. • Current Topic: • Rehabilitation Research and Training Center on Community Integration for Persons with TBI • Brain Injury Association of Texas

3. RRTC on Community Integration of Persons with TBI • Rehabilitation Research and Training Centers – National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Dept. of Education • National Center • Research • Training • Technical Assistance • Dissemination

4. RRTC on Community Integration of Persons with TBI • Co-Director: • Angelle Sander, PhD • Director of Training: • Karen Hart, PhD • Project Principal Investigators: • Carol Gill, PhD • Sunil Kothari, MD

5. Co-Investigator/Collaborators: Dan Graves, PhD Jerome Caroselli, PhD Sharon Brown, PhD Lisa Keenan, PhD Claudia Robertson, MD Faye Chiou-Tan, MD Les Young, DARS John Corrigan, PhD – Ohio State U. Jennifer Bogner, PhD – Ohio State U. Tim Atchison, PhD – W Texas A&M U. Nina Robins, MA – U. of Illinois-Chicago The Orange Show Foundation Brain Injury Association of America Brain Injury Association of Texas Metropolitan Multiservice Center – Houston Jason Ferguson Linda Herman Niki Cannon LaTricia Eckenrode RRTC on Community Integration of Persons with TBI

6. What is Community Integration? • Independence • Relationships • Meaningful activities to engage in “having something to do, somewhere to live, and someone to love.” (Jacobs, 1993)

7. Evidence for Reduced Community Integration After TBI • High rates of unemployment • Majority reside with families rather than independently • Majority financially dependent upon family members

8. 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)

9. Community Integration According to Persons With TBI(McColl et al., 1998) Most common feature reported as important to community integration: Meeting new people and making new friends.

10. RRTC on Community Integration of Persons with TBI:Mission • 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.

11. RRTC on Community Integration of Persons with TBI:Mission • That all areas of community integration, including traditionally under-emphasized areas such as friendships, intimacy, and creative expression be addressed. • That attitudinal barriers to community integration of persons with TBI be reduced.

12. RRTC on Community Integration of Persons with TBI:Mission • 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.

13. RRTC on Community Integration of Persons with TBI:Research Projects • Increasing Social Networking Opportunities following TBI. • Ethnic Diversity in Acceptance of Disability in Community Integration Needs, Barriers, and Supports. • Family Members as Rehabilitation Paraprofessionals: Use of Distance Learning as a Training Tool for Families in Rural Areas. • Effectiveness of a Brief Educational Intervention for Reducing Substance Abuse after TBI. • Exploring Intimacy following TBI • Understanding Factors that Contribute to Decreased Social Integration after TBI

14. RRTC on Community Integration of Persons with TBI:Training Projects • National Information, Educational Resources, Dissemination, and Technical Assistance Center. • Increasing Community Awareness of TBI and Reducing Attitudinal Barriers. • Social Action Networking in Persons with TBI • Center for Creative Expression for Persons with TBI • Training of Healthcare Professionals in the Community Integration Needs of Persons with TBI • Rehabilitation Research Post-Doctoral Fellowships • State of Science Conference (2006)

15. Research Projects: Increasing Social Networking Opportunities following TBI.

16. 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.

17. 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.

18. 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.

19. Social Peer Mentoring • Johnson & Davis (1998) 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

20. Social Peer Mentoring • Social Peer Mentoring program will modify this approach by using peers as mentors. • Mentors will be individuals with brain injury who have been successful in resuming or developing new social relationships after their injuries. • Also modified to be 4-month mentoring period • Study designed as RCT.

21. 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 • Mentors – 4 month period, minimum twice monthly contact with mentee. • Mentors complete extensive training and have access to on-call therapist

22. Social Peer Mentoring • Those seeking mentoring will be adults with TBI, who are no longer participating in comprehensive rehabilitation, recruited from outpatient clinics and discharges from post-acute rehabilitation programs. • Mentees randomized to receive peer mentoring or to a 6-month wait list. • All will complete pre- and post-assessments.

23. Social Peer Mentoring:Assessment • Craig Handicap Assessment and Reporting Technique (CHART-SF) – screening only • Social Activity Interview (new instrument) • Social Network Inventory • UCLA Loneliness Scale – Version 3 (modified) • The 6-Item Interpersonal Support Evaluation List • Satisfaction with Life Scale • Weekly Social Activity Survey (new instrument)

24. Social Peer Mentoring • Study Design • Intake interview and screening • Randomization and matching • Baseline assessment and charting of social activities. • Peer mentoring for 4 month period • Follow up 2 months after peer mentoring • Follow up 6 months after peer mentoring.

25. Social Peer Mentoring • Current Status • Completed Design of assessment tools • Completed Screening and Matching Interviews/Criteria (collaboration with Big Brothers/Big Sisters of Greater Houston area) • Completed Mentor Training Manual (currently in final review) • Completed Mentor Training Curriculum • Ready to submit to IRB for review • Target beginning recruitment in May 2005.

26. Research Projects: Family Members as Rehabilitation Paraprofessionals: Use of Distance Learning as a Training Tool for Family Members in Rural Areas.

27. 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.

28. Family Training • Only one study has looked at the effectiveness of training family members to implement cognitive rehabilitation strategies. • Smith & Godfrey (1995) found that persons with TBI who received help from family for cognitive strategies showed: • reduced time to become aware of their difficulties as compared to a control group • This was seen even with groups being equivalent with regard to time post injury, injury severity, and baseline neuropsychological test performance.

29. Family Members As Paraprofessionals: Use of Distance Learning To Train Family Members in Rural Areas • Rationale for Project: • 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.

30. 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.

31. 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

32. 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

33. 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 interactive videoconferencing. The family members will attend the conferences at West TX A&M U.

34. 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 • Compensating for problems with initiation and organization • Compensating for problems with emotions and controlling behavior

35. 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

36. Family Members As Paraprofessionals: Use of Distance Learning To Train Family Members in Rural Areas • Baseline and Follow-Up Assessment: • Problem Checklist from Modified HIFI • Supervision Rating Scale • CHART-SF • Modified Caregiver Appraisal Scale • Satisfaction with modules (at follow-up only)

37. Family Members As Paraprofessionals: Use of Distance Learning To Train Family Members in Rural Areas • Current Status: • Modules have been developed, critiqued, and translated into Spanish. • Technological Issues have been worked out!! • Recruitment issues have been resolved. • IRB approval has been obtained. • In process of pilot run of module sequence – anticipate will begin first actual run in June (following PI’s maternity leave!!)

38. Training Projects: Increasing Community Awareness of TBI and Reducing Attitudinal Barriers.

39. 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.

40. Attitudes & Environment • Other environmental variables that affect community participation include: • physical barriers • social policies • financial resources • transportation access • etc.

41. Increasing Awareness • Increasing public awareness about TBI and its effects was one of the top 3 priorities identified by consumers in the 2003 BIAA focus groups (Bergman, personal communication). • Lack of understanding by general public is one of most difficult aspects for community integration and contributes to social isolation and reduced participation. • Persons with TBI and their family members often report frustration with lack of understanding by others, even by those within their own social networks. • In addition, many report having “fatigue” in having to explain the situation repeatedly to various others.

42. Increasing Community Awareness of TBI and Attitudinal Barriers • Development of Educational Packets • Video • Audio • Written Materials • English and Spanish • One set developed for Adults. • One set developed for children regarding brain injury in an adult parent, relative, or friend.

43. 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.

44. Increasing Community Awareness of TBI and Attitudinal Barriers • Year 1: Focus groups/surveys • 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

45. Training Projects: Center for Creative Expression for Persons with TBI

46. 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.

47. 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

48. Center for Creative Expressionfor 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.

49. Center for Creative Expressionfor 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)

50. Center for Creative Expressionfor Persons with TBI • Class Schedule: • 1 hour • 12 weeks • Twice a month • New classes every 6 months