Facilitating Friendships after TBI

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Facilitating Friendships after TBI
State of the Science 2007

• Margaret A. Struchen, PhD
• Co-Director, RRTC on Community Integration of
• Persons with TBI
• Dept. of Physical Medicine and Rehabilitation,
• Baylor College of Medicine
• Brain Injury Research Center, Memorial
  HermannTIRR
• Houston, Texas

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Research Team

• Social Peer Mentor Team
• Angelle M. Sander, PhD
• Allison N. Clark, PhD
• Lynne Cole Davis, PhD
• Diana Kurtz, BA
• Jason Ferguson
• Sunil Kothari, MD
• Jerome Caroselli, PhD

• Mentor Training
• Development Team
• DeLisa West, PhD
• Niki Cannon
• LaTricia Eckenrode
• Patricia Backus, MA, CCC-SLP
• Shawn Jeffrey, CTRS
• Melissa Gautreau, BS
• Jerome Caroselli, Ph.D.
• Lisa Keenan, PhD

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Acknowledgements

• 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.
• (Grants H133G010152, H133B031117)

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Importance of Problem

• Social isolation frequent
• Social network size decreases with time
• Increased reliance on family for emotional
  support and leisure
• High rates of unemployment 1-10 years
  post-injury.
• Emotional, social, and behavioral impairments
  more predictive of participant restriction
  following TBI than cognitive or physical
  impairments.
• Negative impact on quality of life and on
  emotional functioning of persons with TBI

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Recurring Themes (Morton Wehman, 1995)

• Reduction in friendships and social support.
• Lack of social opportunities to make new
  friendships.
• Reduction in leisure activities.
• Anxiety and depression found in large number,
  remains for prolonged period.

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Social Integration after TBIStudies with Adults

• Weddell et al. (1980) (N44, all 2 yrs.
  post-injury)
• Almost half of their sample had limited or no
  social contacts, few leisure interests 1-yr
  post-injury
• Those with personality change significantly
  less likely to return to work, had fewer
  interests, more frequently bored, more dependent
  on family
• Quality of friendships changed to more casual
  acquaintances.
• Lezak (1987) (N42 men, every 6 mos, 6
  timepoints)
• Social dislocation and isolation continuing
  pattern over time in spite of some emotional and
  personality improvements
• 90 with problems with social contact at all
  timepoints.
• Bergland Thomas (1991) (N12 adults)
• 92 of family members and persons with TBI
  reported that person with TBI had changes in
  friendships
• 75 reported difficulty with making new friends.

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Social Integration after TBIStudies with Adults

• Eames et al. (1995) (N55) (1 yr post-inj, max
  8.5 yrs)
• 71 reported no social life except that arranged
  by families
• 15 reported marked reduction in social activity
• Only 14 reported an independent active social
  life
• Olver et al. (1996) (N103)(2 yrs. and 5 yrs.
  post-injury)
• Over half of sample reported having lost friends
  and increased social isolation.
• Snow et al. (1998) (N24)(3-6 mos and 2 yrs.
  post-injury)
• Discourse measures related to social integration
  as measured by CHART at follow-up.

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Social Integration after TBIStudies with
Children

• Bohnert et al. (1997) (N22, 15 severe) (age
  8-16) (11 m-7y post-inj)
• No changes noted in network size or quality of
  friendships per self-report.
• Parent ratings of Social Competence significantly
  lower than controls. Related to severity of
  injury as well.
• Bedell Dumas (2004) (N60)(age 3-21 years
  mixed etiology, all with inpt. rehab.)
• Children most restricted in peer social-play,
  structured community activities, and managing
  daily routines.
• Prigatano Gupta (2006) (N14 sev, 10 mod, 36
  mild, 16 controls) (age 17-14) (1-2 yrs.
  post-inj)
• 75 of trauma controls, 39 of children with
  mild, 20 moderate, and 14 severe injury
  reported having 4 friends or more.

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What do we mean by Friendships?

• Voluntary relationships involving reciprocal
  interaction and some degree of affective
  involvement from each partner. (Matthews, 1983)
• Friendship bond is fragile because there are no
  formal ties. (Wiseman, 1986)
• Important for supporting self- esteem, learning,
  and social competences.

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Facilitating Friendships after TBI Approaches
Utilized

• Social Communication Abilities

• Community-Based Programs

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Definition

• Social skills are the abilities to

Express both positive and negative feelings in
the interpersonal context without suffering
consequent lack of social reinforcement. Such
skill is demonstrated in a a large variety of
interpersonal contexts and involved the
coordinated delivery of appropriate verbal and
nonverbal responses. In addition, the socially
skilled individual is attuned to the realities of
the situation and is aware when he is likely to
be reinforced for his efforts. Hersen Bellack,
1977
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Social Communication Deficits

• Speed of processing
• Reduced comprehension
• Slowed rate of speech
• Long pauses in conversation
• Losing track of topic during conversation
• Egocentricity
• Concreteness of thought
• Perseveration
• Impulsivity
• Poor Planning

• Impaired self-monitoring
• Impaired self-regulation
• Reduced initiation of conversation
• Insensitivity to others
• Sudden topic shifts
• Overtalkativeness
• Tangentiality
• Overfamiliarity
• Repetition and reliance on set expressions
• Impoverished speech
• Literal interpretation of otherss statements.

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So What Do We Do? Interventions

• Systematic feedback
• Shaping, fading, cueing
• Self-monitoring
• Modeling
• Role Play
• Rehearsal
• Social Reinforcement

• Generalization probe
• Meta-cognitive procedures
• Social knowledge
• Awareness building
• Brainstorming alternatives
• Scripting
• Outloud self-direction
• In vivo coaching

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State of Science Review of Social Communication
Interventions (Struchen, 2005)

• 19 peer-reviewed studies with adults
• 1 study has been reported since that time, but
  not published as of yet (RCT) preliminary
  results
• 13 were case studies/case series
• Only 1 of 19 provided class I evidence (RCT), but
  small sample size, mixed etiology, short
  follow-up, inpatient rehab setting.
• Cicerone et al. (2000, 2004) cited evidence as
  supporting practice standard however,
  methodological limitations would suggest greater
  caution.

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Class I Study Combined Interventions with Adults
(Helffenstein Wechsler, 1982)

• RCT, with masked raters for some outcome
  measures.
• 16 adults with non-progressive brain injury
• Randomized to 2 conditions
• 20 hours Interpersonal Process Recall
• 20 hours non-therapeutic attention
• Findings
• Decreased proneness to anxiety.
• Increased general self-concept.
• Increased interpersonal/communication skills as
  rated by professional raters masked to treatment
  condition.
• Trend toward self-report of increased
  communication skill.

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Class I study Group Intervention with
AdultsDahlberg et al. (unpublished)

• 52 adults with TBI (age 18-65)
• Equally randomized to social skills group
  treatment or standard of care.
• 12-week class with 90 minute group sessions.
• Preliminary Results
• Treated group scored significantly better than
  untreated group in 7 of 10 areas rated (PFIC).
• Greatest improvements in active participation and
  appropriate content.
• Those in classes self-report improvement.
• At 6-months follow-up, treated had greater life
  satisfaction and improvements made in
  communication were maintained or continued to
  improve.

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Online Cognitive-Behavioral Intervention to
Improve Child Behavior and Social Competence
(Wade et al., 2006)

• 44 families of children with mod-sev TBI
• RCT Online family problem-solving group (FPS)
  vs. Internet Resources (IR) group
• FPS group
• 14 separate sessions (8 core, 6 specific to
  situations)
• Steps of problems-solving, cognitive changes,
  behavior changes, communication, crisis mgt.,
  future planning
• Self-guided web sessions synchronous online
  appt with therapist via videoconference
• FPS group demonstrated significantly better
  self-management/compliance than IR group.
• Trend toward greater improvement in social
  competence, behavior problems, and
  internalization on parent-report scales

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Alternative Approaches

• Community-based programs
• Supported Relationships
• Peer mentoring has been used to help persons with
  disabilities with adjustment issues and with
  finding ways to access resources.
• Using peer mentoring to help with developing
  social relationships has been used in some
  groups.

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Peer Support in the Community(Hibbard et al.,
2002)

• TBI-Mentoring Partnership Program (TBI-MPP)
  designed to address acute and long-term
  adjustment needs, reduce social isolation,
  provide social support and validation of
  experiences.
• 20 individuals in peer support program (11 with
  TBI, 9 family members)
• Results
• 82 with TBI and all family members reported
  program increased ability to cope with TBI
• Over half of the entire group reported enhanced
  quality of life due to participation in program
• Social support less impacted (group reporting increased family support or
  increased friend support)
• Qualitatively, participating reported having
  shared experience most beneficial with reduction
  in feeling alone.

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Increasing Leisure Activity(Douglas, Dyson
Foreman, 2006)

• 20 adults with TBI
• Grouped by level of participation in Community
  Leisure Groups (disability svcs.)
• No participation n6 (none)
• No sustained participation (
• Sustained participation ( weekly) n7
• Baseline and 6-mos. post assessment
• Results
• Sustained participation group with significant
  increase in CIQ social integration scores over
  time
• Sustained and no-sustained participation groups
  with trend to have greater frequencies of close
  relationships compared to non-participators.

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Case Series Supported Relationships (Johnson
Davis (1998)

• Supported relationships focused on increasing
  integrated social activities.
• Community volunteers as mentors.
• Mentors trained by watching video with
  information on how TBI impacts life of persons
  with TBI received manual.
• 4-week commitment, 1X per week contact.
• 3 participants with TBI.
• All 3 participants with TBI increased integrated
  social contacts during mentoring.
• All 3 participants maintained increased ISCs
  compared to baseline at 8 weeks after mentoring.
• All 3 participants rated contacts as being mostly
  good or really great.

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Social Peer Mentor Trial(Struchen et al, in
progress)

• Test the usefulness of a social peer mentoring
  program to help improve social outcomes and
  decrease feelings of loneliness for persons with
  brain injury.
• Improving social outcomes involves
• Increasing how often a person does social
  activities
• Increasing the number of people that a person can
  do these social activities with.

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Social Peer Mentor Trial

• Expand from case series to larger sample.
• Random assignment with wait-list control for
  comparison.
• Use of peers as mentors
• Increase mentoring period from 1 month to 3 months

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Social Peer Mentor Trial

• To improve the social integration of persons with
  TBI who are having difficulty developing social
  networks.
• Weekly Social Activity Schedules
• Social Activity Interview
• To improve emotional functioning of persons with
  TBI by increasing social networking
  opportunities.
• Depressive symptomatology
• Loneliness
• Perceived stress
• Life satisfaction

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Social Peer Mentor Screening Training

• Screening
• Application
• Interview
• CHART100
• Background check
• Social Activity Interview
• Training Sessions
• Two didactic/interactive sessions
• On-Call Therapist with regular follow-up calls
• Booster sessions

• Training Materials
• Role of Mentor
• Information about Brain Injury
• Information about Common Problems and how to help
• Skills that mentor should help partner develop
• Ideas about social activities.
• Worksheets to help plan social activities.
• Information on what to do in emergencies.
• Resources

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Social Peer Mentor - Skills

• Social Resources
• Initiation/Planning
• Transportation
• Budget
• Social Communication Skills

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Social Peer Mentor TrialCurrent Status

• 12 mentors recruited, 9 trained
• 22 peer partners recruited
• 6 mentor-peer partner matches made
• No results as of yet, too early.
• Results will be posted on website
• www.tbicommunity.org

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What gaps need to be addressed?

• Empirical studies demonstrating effectiveness of
  social communication skills interventions.
• Treatment focused on receptive abilities as well
  as expressive abilities.
• Empirical studies demonstrating effectiveness of
  alternative approaches.
• Peer support
• Leisure programs
• Circle of Friends
• Others?

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www.tbicommunity.org

• Margaret A. Struchen, Ph.D.
• Brain Injury Research Center/TIRR
• 2455 S. Braeswood
• Houston, TX 77030
• [phone]
• struchen_at_bcm.edu
• Margaret.Struchen_at_memorialhermann.org