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

1. 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 Memorial Hermann|TIRR

2. 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

3. What is the impact of TBI on the family?

4. 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

5. Model of Family Adaptation to TBI • Coping Style • Social Support Injury and related impairments Physical/Psychological Health Perceived Stress/Burden

6. 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

7. 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

8. 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

9. 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

10. 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)

11. 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.

12. 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

13. 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

14. 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

15. 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.

16. 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

17. 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.

18. 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).

19. 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

20. 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)

21. 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

22. 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.

23. 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).

24. 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.

25. 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

26. 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

27. 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.

28. 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.

29. Session 5: Overcoming Negative Thinking • Teach to reframe negative, counter-productive thoughts into positive ones • DON’T THINK ___________. THINK _____________!

30. 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

31. 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

32. 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

33. 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

34. Pre- and Post-test Measures • Brief Symptom Inventory • Depression • Anxiety • Global Severity Index • Ways of Coping Questionnaire • Escape-Avoidance • Distancing • Self-Controlling • Accepting Responsibility

35. Pre- and Post-test Measures • Family Assessment Device • General Functioning Scale • Caregiver Appraisal Scale • Perceived Burden Scale

36. 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)

37. Satisfaction With Intervention • Overall satisfaction with group (89% very satisfied; 11% somewhat satisfied) • Overall satisfaction with written materials (100% very satisfied)

38. 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?

39. 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?

40. 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.

41. 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.”

42. 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