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Outcomes of a Randomized Trial of the NAMI Family to Family Education Program

Outcomes of a Randomized Trial of the NAMI Family to Family Education Program. Lisa Dixon, MD, MPH Professor, University of Maryland School of Medicine VA Capitol Healthcare Network MIRECC. Research Partnership.

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Outcomes of a Randomized Trial of the NAMI Family to Family Education Program

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  1. Outcomes of a Randomized Trial of the NAMI Family to Family Education Program Lisa Dixon, MD, MPH Professor, University of Maryland School of Medicine VA Capitol Healthcare Network MIRECC

  2. Research Partnership University of Maryland School of Medicine: Lisa Dixon, Alicia Lucksted, Bette Stewart, Tony Lehman, Aaron Murray-Swank, Deborah Medoff, Alan Bellack, Li Juan Fang, Vera Sturm, Wendy Potts National Alliance on Mental Illness: Joyce Burland, Maryland Affiliates Baltimore Metro, Frederick, Howard, Montgomery, Prince George’s, FTF Teachers

  3. Rationale • Evidence suggests that clinical programs and professionals have limited contact with families, leaving families with unmet needs and less able to be helpful for the recovery of their ill family members • The NAMI Family to Family program was created by family members to help meet the needs of families of persons with mental illness

  4. Research Background Dixon L, Stewart B, Burland J, Delahanty J, Lucksted A, Hoffman M: Pilot study of the effectiveness of the Family-to-Family Education Program, Psychiatric Services 2001;52:965-967. Dixon L, Lucksted A, Stewart B, Burland J, Brown C, Postrado L, McGuire C, Hoffman M.: Outcomes of the Peer-Taught 12- Week Family-to-Family Education Program for SMI, Acta Psychiatrica Scandinavica 2004:109, 207-215 Two previous studies have suggested that NAMI FTF reduces family subjective burden, increases empowerment, and increases self-perceived knowledge One previous randomized trial of Journey of Hope, an 8-session family led program, showed some benefits in depression, vitality, and perceptions of family member No previous randomized trial of NAMI FTF, the largest and most widely disseminated family program in the country

  5. Family to Family Developed by Dr. Joyce Burland (NAMI Vermont) in 1991. Now taught by over 6,000 trained NAMI family-member volunteers in 49 U.S. states, 2 Canadian Provinces, Mexico and Italy. Most widely available family info & support program in the U.S.

  6. NAMI Family to Family Program • Structured 12-week program with weekly 2-3 hour sessions • Trauma-recovery and stress-coping model • The course is taught by trained family members. • Curriculum focuses on: Schizophrenia, Borderline Personality Disorder, Bipolar disorder, Clinical depression, Panic disorder, PTSD, Obsessive-compulsive disorder

  7. Hypotheses When compared to control condition participants, FTF participants will have… • Increased empowerment (primary) • Increased knowledge of mental illness (primary) • Reduced subjective burden (primary) • Increased emotion-focused coping (secondary) • Reduced distress (secondary) • Improved family functioning (secondary) • Reduced negative aspects of caregiving (exploratory) • Increased positive aspects of caregiving (exploratory)

  8. Hypotheses Benefits at program completion will be sustained six months later.

  9. Design Randomized trial of family members Participants assigned to immediate FTF vs. any desired supports other than FTF + spot in next FTF class Participant assessment at baseline prior to randomization and then three months later Interviewer blinded to study condition Participants randomized to FTF also interviewed 6 months after completion of class FTF classes conducted naturally as they always are Participants enrolled from 3/15/06 to 9/23/09

  10. Participant Recruitment All individuals who called participating NAMI affiliate about FTF were directed to Bette Stewart, the state’s NAMI FTF coordinator and UMB staff member Bette Stewart assessed if FTF was appropriate for the person, and if so, if they were interested in the study If yes, they were referred to research team for possible enrollment, informed consent process, assessment and randomization. If no, Bette assisted them in enrolling in FTF

  11. Comparison of Study Participants v. Decliners

  12. Characteristics of Study Participants (n=313) Percentage of Participants

  13. Characteristics of Study Participants (n=313) Percentage of Participants

  14. FTF Classes Attended by FTF Participants Percentage of Participants

  15. What other assistance did participants in the study obtain during the 3-month study period?

  16. NAMI Supports used during the 3-month Study Period Percentage of Participants

  17. Mental Health Supports during 3-month Study Period Percentage of Participants

  18. Informal Supports during 3-month Study Period Percentage of Participants

  19. Fidelity Randomly selected class from each course was evaluated on 18 essential elements by visiting FTF teacher Average rating: 90% (SD=7.54). Only one class scored less than 75%. Additional class-meeting evaluated during that session achieved >90%

  20. Results

  21. Empowerment in Family (FES Family Subscale) P=.027, ES=.31 P<.001 (BL vs. 9-Mo) FTF=133, Control=126

  22. Empowerment in Service System (FES Service System Subscale) P=.012, ES=.42 P<.01 (BL vs. 9-Mo) FTF=133, Control=126

  23. Empowerment in Community (FES Community Subscale) P=.005, ES=.50 P<.001 (BL vs. 9-Mo) FTF=133, Control=126

  24. Knowledge Test P=.016, ES=.40 P<.001 (BL vs. 9-Mo) FTF=133, Control=126

  25. Subjective Burden (FEIS Worry Subscale) NS P<.001 (BL vs. 9-Mo) FTF=133, Control=126

  26. Subjective Burden (FEIS Displeasure Subscale) NS P<.001 (BL vs. 9-Mo) FTF=133, Control=126

  27. Emotion Focused Coping (COPE Acceptance Subscale) P=.006, ES=.38 P<.001 (BL vs. 9-Mo) FTF=133, Control=126

  28. Emotion Focused Coping (COPE Positive Subscale) P<.01 (BL vs. 9-Mo) NS FTF=133, Control=126

  29. Distress (CGI Anxiety Subscale) P<.01 (BL vs. 9-Mo) P=.04, ES=.26 FTF=133, Control=126

  30. Distress (CGI Depression Subscale) P<.001 (BL vs. 9-Mo) NS FTF=133, Control=126

  31. Distress (CGI Global Score)) P<.01 (BL vs. 9-Mo) P=.081, ES=.22 FTF=133, Control=126

  32. Family System Functioning (Problem Solving Scale) P=.02 (BL vs. 9-Mo) P=.019, ES=.30 Lower scores reflect Better functioning. FTF=133, Control=126

  33. Family System Functioning (General Functioning Scale) P<.01 (BL vs. 9-Mo) NS FTF=133, Control=126

  34. Experience of Caregiving (ECI Positive Scale) P=<.001, ES=.46 P=.20 (BL vs. 9-Mo) FTF=133, Control=126

  35. Experience of Caregiving (ECI Negative Scale) P=<.001 (BL vs. 9-Mo) NS FTF=133, Control=126

  36. FTF Classes Attended by FTF Participants Percentage of Participants

  37. Distress (CGI Depression Subscale)Those Who Attended at least one Class) P<.001 (BL vs. 9-Mo) P=.03 FTF=116, Control=126

  38. Depression (CESD)Those Who Attended at least one Class) P=.03 P=.053 (BL vs. 9-Mo) FTF=116, Control=126

  39. Summary • The study findings supported the hypotheses that FTF • improves empowerment, knowledge and emotion-focused coping of family members • reduces the anxiety and possibly depression experienced by family members • improves the functioning of family members with respect to problem solving skills • benefits retained at 6 months

  40. What Do The Results Mean? Small to moderate effect sizes Changes observed on the FAD problem solving and COPE acceptance scales are consistent with reports in the literature in which these scales are used to differentiate clinical from non-clinical samples or changes in clinical samples with treatment over time Changes more complex than measures?

  41. What Do The Results Mean? Benefits are readily understood in terms of self-help theory, stress/coping and trauma/recovery models Dr. Burland conceived of FTF as a way to change the “consciousness” of family members.

  42. What Do The Results Mean? • Qualitative study echoed quantitative results and suggested that the growth in empowerment and coping as well as reductions in distress together produced very meaningful benefits in the lives of FTF participants FTF experienced produced marked immediate positive global benefits with the promise of longer term growth.

  43. New Info. & Support Early Engmt New Tools & Skills Insights & Acceptance Emotional Changes New Ways of Acting Immediate Benefits Global Benefits Fit With Qualitative Study • suggested that new info + support + skills = changes in awareness, more active coping, increased empowerment, • Which help reduce distress, improve family relating, and leads to broader benefits. • Lucksted, Stewart, Forbes, 2008

  44. Conclusions Evidence that relatively brief peer-taught family interventions enhance family outcomes. And that such peer-led family programs are important in the toolkit of approaches to help families of persons with mental illness

  45. Next Steps • NAMI and supporters continue to expand FTF with this research evidence helping. • Additional analyses will focus on “decliner” sample. Did people in the RCT differ from those not willing to sign up? • Did FTF benefit some subgroups of family members more than others? • Look at limited data on consumers

  46. Future Research • To understand and possibly improve FTF’s impact on consumer outcomes and wellbeing • Strategies to promote linkage of FTF (or related) with mental health system, more access • Enhancing FTF’s “reach” via mobile, online tools

  47. Timeline NIMH Center Grant (95-00)(Steinwachs), K Award (95-99) RWJF Grant FTF Controlled Trial (2000-2002) NIMH R01 Randomized Trial (2005-2009) PORT Contract (92-97) Grants 1990 2000 2010 Pubs PORT Family Psychoed EBP (Sz Bull, 1995) State funding for Family Services: FTF (PS,1999) Pre-post Pilot Study of FTF (PS, 2001) WL Control FTF Study (Acta, 2004)

  48. Thanks to all for making this happen!

  49. For further discussion, if time

  50. Improved Communication The communications skills really helped us not to fight as much. [Before] it was a constant fight with [sister], and then when we started looking at the communication skills and learning all of the other stuff in Family-to- Family … Instead of isolating her and her always feeling like we were blaming her and that everybody was against her, she even said she started to feel like we were really supporting her and that we were on her side.

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