Transcript Family Environment of Persons With Traumatic Brain Injury

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
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
What is the impact of TBI on
the family?
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
Model of Family Adaptation to TBI
Coping Style
Social Support
Injury and
related
impairments
Physical/Psychological
Health
Perceived Stress/Burden
Predictors of Emotional Distress in
Caregivers of Persons With TBI
• Emotion-focused coping (EscapeAvoidance)
• Satisfaction with social support
• Perceived burden
• NOT RELATED
– Disability of person with injury
– Problem-focused coping
– Amount of social support
Sander et al., 1997
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
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
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 Master’s level social worker
or Licensed Professional Counselor
• sessions combine didactic presentation with
group therapy
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)
Session 1: Introduction
• Have family members introduce themselves
and tell their stories.
• Introduce metaphor from Maxwell’s 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.
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
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
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
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.
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
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.
Session 3: Relationships
• Therapist initiates discussion of changes in
communication and positive interactions.
• Explain changes as a result of the injury’s
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).
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
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)
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
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.
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).
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 they’ve found
these strategies helpful and others they have
used.
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
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, selfempowering thinking
• Emphasis on difficulty with even small
decisions in face of overwhelming nature of
injury
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 doesn’t work, try another and re-evaluate
• Practice using problems from previous
session.
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.
Session 5:
Overcoming Negative Thinking
• Teach to reframe negative, counterproductive thoughts into positive ones
• DON’T THINK ___________. THINK
_____________!
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
BIA’s
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
Initial Experiences With
Group Intervention
• Piloted at 3 centers
– The Institute for Rehabilitation and ResearchHouston, 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
Caregiver Demographics
• Mean age=46 (SD=12.4)
• 1 male; 15 females
• Race
– 13 White
– 2 Black
– 1 Hispanic
• 9 spouses/partners; 7 parents
• Income (2 missing)
– 4 < $20K
– 7 $20-50K
– 3 >$50K
Pre- and Post-test Measures
• Brief Symptom Inventory
– Depression
– Anxiety
– Global Severity Index
• Ways of Coping Questionnaire
–
–
–
–
Escape-Avoidance
Distancing
Self-Controlling
Accepting Responsibility
Pre- and Post-test Measures
• Family Assessment Device
– General Functioning Scale
• Caregiver Appraisal Scale
– Perceived Burden Scale
Results
• Significant reduction in BSI Anxiety Tscores from pre- to post-test (Mean
change=3.5; SD=6.5; 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)
Satisfaction With Intervention
• Overall satisfaction with group (89% very
satisfied; 11% somewhat satisfied)
• Overall satisfaction with written materials
(100% very satisfied)
Satisfaction With Intervention
• All answered yes to
– Gain new knowledge about brain injury and its
effects?
– Learn new ways to manage your loved one’s
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?
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?
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.
What do you feel is the most
important thing that you learned?
• “…not feeling guilty to have time to myself.”
• “I don’t 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.”
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
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 LoftinBaylor/TIRR- data coordination
• Allison Clark, M.S.- data analyses