A Cognitive-Behavioral Approach to Reducing Caregiver Distress After Traumatic Brain Injury Angelle M. Sander, Ph.D. Assistant Professor Department of.

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 SupportNational 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

Injury and related

impairments

Coping Style

Social Support

Perceived Stress/Burden

Physical/Psychological Health

Model of Family Adaptation to TBI

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

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, self-empowering 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, counter-productive 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 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

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 T-scores 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 Loftin- Baylor/TIRR- data coordination

• Allison Clark, M.S.- data analyses