novel approaches to improving community integration after traumatic brain injury angelle m. sander,...

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


• 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.


• 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.

• 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.

Why the focus on Community Integration?

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 Lecture2002

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 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.

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.

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.


• 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


• 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


• 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


• 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

All modules have been translated into Spanish and will be conducted by a Spanish-speaking therapist as needed.


• 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.


• 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


• 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.


• 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

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


• 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.


– 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.


• 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.


• 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.


• 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.


• 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.


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

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]

http://www.tbicommunity.org/

novel approaches to improving community integration after traumatic brain injury angelle m. sander,...

Documents

community services

larger community

areas of community integration

larger disability community

needs of persons

appropriate social roles

disability corrigan

rehabilitation research