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 you’re 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 A&M 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.