A CognitiveBehavioral Approach to Reducing Caregiver Distress After Traumatic Brain Injury

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A Cognitive-Behavioral Approach to Reducing
Caregiver Distress After Traumatic Brain Injury

• Angelle M. Sander, Ph.D.
• Assistant Professor
• Department of Physical Medicine Rehabilitation
• Baylor College of Medicine/
• Harris County Hospital District
• Project Co-Director
• Rehabilitation Research and Training Center
• on Community Integration in
• Persons With Traumatic Brain Injury
• The Institute for Rehabilitation and Research

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Grant Support

• National Institute on Disability and
  Rehabilitation Research
• Mary E. Switzer Rehabilitation Research
  Fellowship
• Traumatic Brain Injury Model Systems
• Rehabilitation Research and Training Center on
  Interventions in Persons with TBI
• TBI Model System Collaborative Project
  (collaborating sites Mayo Clinic and Methodist
  Rehabilitation Center in Jackson, MS)
• Rehabilitation Research and Training Center on
  Community Integration in Persons With TBI

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What is the impact of TBI on the family?
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Impact of TBI on the Family

• Emotional Distress

• Disruption of family systems functioning
• (roles, communication, affection/warmth)

• Social Isolation

• Increased seeking of help for mental health

• Increased alcohol and/or substance use

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Model of Family Adaptation to TBI
Coping Style Social Support
Injury and related impairments
Physical/Psychological Health
Perceived Stress/Burden
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Predictors of Emotional Distress in Caregivers of
Persons With TBI

• Emotion-focused coping (Escape-Avoidance)
• Satisfaction with social support
• Perceived burden
• NOT RELATED
• Disability of person with injury
• Problem-focused coping
• Amount of social support

Sander et al., 1997
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Family Needs After TBI

• Most important need was to receive medical
  information.
• Also rated high were needs for information on
  physical, cognitive, and emotional changes, and
  need for information presented in clear, honest
  manner.
• Medical information needs met.
• Needs for emotional and instrumental support
  unmet.

Kreutzer colleagues, 1994, 1995, 1996
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Components of a Family Intervention Program

• General education re TBI and consequences
• Direct training in management of physical,
  cognitive, and emotional impairments
• Discussion of relationship changes and strategies
  to improve communication/interactions
• Training in stress management techniques
• Education regarding local and national community
  resources, including support groups

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A Cognitive-Behavioral Approach to Treating
Families After Traumatic Brain Injury

• 6-week group intervention with 2-hour sessions
  occurring once per week
• combination of psychoeducational and
  cognitive-behavioral treatments
• can be led by a Masters level social worker or
  Licensed Professional Counselor
• sessions combine didactic presentation with group
  therapy

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Session 1 Introduction

• Explain that TBI affects the entire family.
• Normalize family members experiences by
  providing examples from literature and clinical
  experience on difficulties that other family
  members have had.
• Emphasize importance of family members attending
  to their own needs in order to be better
  caregivers (helps assuage guilt for attending to
  their own needs)

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Session 1 Introduction

• Have family members introduce themselves and tell
  their stories.
• Introduce metaphor from Maxwells book Living
  with traumatic brain injury is like trying to
  work a jigsaw puzzle without all the pieces.
• Provide an overview of the next 5 sessions.
• Provide participants with an educational manual
  to take home.

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Session 2 General Education and Management of
Specific Problems

• Begin with education regarding different types of
  TBI (closed versus penetrating) and mechanism of
  injury in each
• Analogy of jello floating in a bowl to describe
  coup-contrecoup injury and diffuse axonal injury
• Use neuroanatomical model of the brain
• Describe typical physical, cognitive, and
  emotional sequelae of TBI

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Session 2 General Education and Management of
Specific Problems

• Emphasize unique differences in the face of
  commonalities regarding injury sequelae.
• Explain typical pattern of improvement

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Session 2 General Education and Management of
Specific Problems

• Have participants complete a checklist of
  neurobehavioral symptoms.
• Have participants pick 2 most stressful symptoms
  and discuss strategies to address these.
• Examples
• Memory deficit impacting recall of dinner menus
• Perseveration on receiving allowance

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Session 2 General Education and Management of
Specific Problems

• Family members abilities to cope with normal
  daily hassles are reduced after TBI.
• Solving small problems can build self-efficacy
  for larger problems.
• Therapists should acknowledge limits with regard
  to large problems (e.g., aggressive behaviors-
  refer out).
• Emphasize that not every strategy works for
  everyone.
• Discuss use of strategies at start of remaining
  sessions.

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Session 3 Relationships

• Goals
• Accept that changes in relationships are a
  natural occurrence after TBI
• Become aware of changes in their families and
  process feelings regarding those changes
• Develop ways to communicate and increase quality
  of time spent together
• NOT to alter family dynamics or overall family
  system

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Session 3 Relationships

• Therapist discusses typical role changes after
  TBI, including action roles (breadwinner) and
  emotional roles (rock).
• Therapist explains role strain.
• Family members complete chart of family roles
  before and after injury.
• Therapist helps them to discover ways that roles
  can be renegotiated.

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Session 3 Relationships

• Therapist initiates discussion of changes in
  communication and positive interactions.
• Explain changes as a result of the injurys
  impact on roles and schedules and prominence of
  injury in daily life.
• Participants share stories regarding changes in
  their family interactions.
• Therapist helps them to develop ways to improve
  communication and quality of time together (e.g.,
  photos).

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Session 3 Relationships

• Therapist describes changes in sexuality that can
  occur after TBI.
• Common forms of sexual dysfunction
• Impact of self-esteem on sexuality of person with
  TBI
• Normalize feelings of decreased attraction

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Session 3 Relationships

• Least structured of all sessions
• Be sensitive to level at which different family
  members have processed changes within their
  family relationships.
• Do Not push participants to acknowledge changes
  they are not ready to process.
• Provide atmosphere open to discussion, but do not
  push them to disclose.
• Goal is to normalize relationship changes within
  context of TBI and set stage for later change.
• Make referrals when necessary (e.g., family
  therapy, sexual counseling)

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Session 4 Stress Management I Education,
Relaxation, and Coping

• Goals
• Educate participants regarding negative impact of
  stress on mind and body
• Train in use of a simple breathing exercise to
  relax
• Teach them to identify their coping strategies
  and evaluate their effectiveness

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Session 4 Stress Management I Education,
Relaxation, and Coping

• Begin with visualization exercise of snake on
  path.
• Have them identify physical changes indicating
  fear/stress.
• Discuss effect of adrenaline response
• Participants complete a checklist of stress
  symptoms to become aware of individual signs.

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Session 4 Stress Management I Education,
Relaxation, and Coping

• Therapist presents simple breathing exercise.
• Participants complete visual analogue scale to
  rate amount of stress before and after each
  exercise.
• Encouraged to practice exercise twice per day
• Refer to educational manual for other exercises
  (progressive muscle relaxation, visual imagery).

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Session 4 Stress Management I Education,
Relaxation, and Coping

• Second half of session- begin discussion of
  coping.
• Emphasize that all family members are coping as
  well as possible, but that TBI is different from
  prior experiences.
• Present coping strategies that others have viewed
  as helpful (Willer et al., 1991).
• Participants discuss whether theyve found these
  strategies helpful and others they have used.

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Session 4 Stress Management I Education,
Relaxation, and Coping

• Present chart to evaluate coping strategies
• helps family members to question whether what
  they do to cope helps them to achieve desired
  goals
• encourages them to think of alternative
  strategies
• encouraged to use for next week

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Session 5 Stress Management II Problem-Solving
and Overcoming Negative Thinking

• Goals are to train in systematic approach to
  problem-solving and to teach reframing of
  negative thoughts into more positive,
  self-empowering thinking
• Emphasis on difficulty with even small decisions
  in face of overwhelming nature of injury

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Session 5 Stress Management II Problem-Solving
and Overcoming Negative Thinking

• Introduce steps toward problem-solving
• Identify the problem
• Brainstorm solutions
• Evaluate the alternatives
• Choose a solution
• Try the solution out
• If it doesnt work, try another and re-evaluate
• Practice using problems from previous session.

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Session 5 Overcoming Negative Thinking

• Introduce ABC model of relationship between
  thoughts, feelings, and actions
• Emphasize power to change own thoughts
• Discuss The Ten Forms of Twisted Thinking
  (David Burns Feeling Good Handbook)
• Provide participants with a chart to evaluate
  thoughts.

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Session 5 Overcoming Negative Thinking

• Teach to reframe negative, counter-productive
  thoughts into positive ones
• DONT THINK ___________. THINK _____________!

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Session 6 Accessing Local and National Resources
and Wrap-Up

• Review most common local and national resources
  provided in manual
• Medical
• Dental
• Housing
• Transportation
• Psychiatric
• Crisis Lines
• Advocacy Organizations
• BIAs

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Session 6 Wrap-Up

• Review highlights of group
• Encourage discussion of helpful aspects of group
  and other things that should have been addressed
• Refer to local support groups for continued
  support
• Encourage continuation of informal support
  network if appropriate
• Complete satisfaction surveys and any outcome
  measures

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Initial Experiences With Group Intervention

• Piloted at 3 centers
• The Institute for Rehabilitation and Research-
  Houston, TX
• Methodist Rehabilitation Center- Jackson, MS
• Mayo Clinic- Rochester, MN
• Participants were 16 caregivers of persons who
  had sustained TBI 1 to 2 years prior had
  received comprehensive inpatient rehab 1 to 2
  years earlier

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Caregiver Demographics

• Mean age46 (SD12.4)
• 1 male 15 females
• Race
• 13 White
• 2 Black
• 1 Hispanic
• 9 spouses/partners 7 parents
• Income (2 missing)
• 4 lt 20K
• 7 20-50K
• 3 gt50K

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Pre- and Post-test Measures

• Brief Symptom Inventory
• Depression
• Anxiety
• Global Severity Index
• Ways of Coping Questionnaire
• Escape-Avoidance
• Distancing
• Self-Controlling
• Accepting Responsibility

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Pre- and Post-test Measures

• Family Assessment Device
• General Functioning Scale
• Caregiver Appraisal Scale
• Perceived Burden Scale

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Results

• Significant reduction in BSI Anxiety T-scores
  from pre- to post-test (Mean change3.5 SD6.5
  p.046)
• Significant reduction on Escape-Avoidance scale
  on the Ways of Coping Questionnaire (p.019)
• Trend toward significance on Family Assessment
  Device (p.073)

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Satisfaction With Intervention

• Overall satisfaction with group (89 very
  satisfied 11 somewhat satisfied)
• Overall satisfaction with written materials (100
  very satisfied)

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Satisfaction With Intervention

• All answered yes to
• Gain new knowledge about brain injury and its
  effects?
• Learn new ways to manage your loved ones
  problems with thinking and memory?
• Learn new ways to manage difficult behaviors,
  such as angry outbursts or embarrassing
  behaviors, in your loved one?
• Learn new coping skills that you feel would be
  helpful to you?

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Satisfaction With Intervention

• All answered yes to
• Learn new ways to handle stress in your everyday
  life?
• All but one answered yes to
• Feel more confident about your ability to solve
  everyday problems?
• Feel more confident about your ability to care
  for your loved one?
• Learn new ways to communicate with your loved one?

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Satisfaction With Intervention

• All but one answered yes to
• Learned new ways to communicate with other family
  members and friends?
• Gained knowledge about resources that could help
  you in your community and nationally?
• All said that they would recommend the group to
  other family members.

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What do you feel is the most important thing that
you learned?

• not feeling guilty to have time to myself.
• I dont think my husband is doing this on
  purpose.
• How to handle stress (mentioned by most)
• Discussing issues and problems with others who
  are going through the same situation made me feel
  not so alone.
• how to stop ___ from asking for money all the
  time and how to get him to stop using bad
  language with his sisters.

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Methodological Considerations for Future Studies

• Sample sizes
• Attrition
• Motivation for participation
• Timing
• Cultural/geographic/SES needs
• Relative benefit of group interventions versus
  individual home-based interventions

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Acknowledgements

• Risa Nakase-Richardson, Ph.D.- Methodist
  Rehabilitation Center- data coordination and
  conducting groups
• Anne Moessner, M.S.N., R.N.- Mayo Clinic- data
  coordination
• Julie Testa, Ph.D. - Mayo Clinic- conducting
  groups
• Dawn Jones, Jennifer Josey, Kara Loftin-
  Baylor/TIRR- data coordination
• Allison Clark, M.S.- data analyses