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
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
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
Research Background



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
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 12Week Family-to-Family Education Program for SMI, Acta Psychiatrica Scandinavica 2004:109, 207-215
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.
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
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)
Hypotheses
Benefits at program completion
will be sustained six months
later.
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
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
Comparison of Study
Participants v. Decliners
Declined (N=857) Consented in FTF Comparison
Study (N=314)
Age
53.5 (11.6)
51.9 (10.9)
P<.05
Caucasian (%)
68%
66%
ns
Gender (% Male)
29%
23%
P<.05
N=118, 38%
ns
County
Baltimore Metro N= 316, 37%
Montgomery N=284, 33%
Frederick N=87, 10%
Howard N=146, 17%
Prince George’s N=24, 3%
N=97, 31%
N=45, 14%
N=49, 16%
N=5, 2%
Characteristics of Study
Participants (n=313)
Percentage of Participants
Characteristics of Study
Participants (n=313)
Percentage of Participants
FTF Classes Attended by FTF
Participants
Percentage of Participants
80
68
70
60
50
40
30
20
13
10
9
10
1 to 4
5 to 8
0
None
Number of Classes Attended
9 to 12
What other assistance did
participants in the study
obtain during the 3-month
study period?
NAMI Supports used during the 3month Study Period
Percentage of Participants
Mental Health Supports during
3-month Study Period
Percentage of Participants
Informal Supports during
3-month Study Period
Percentage of Participants
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%
Results
Empowerment in Family (FES
Family Subscale)
4
3.9
3.8
3.7
3.6
P=.027, ES=.31
3.5
FTF
Control
P<.001 (BL vs. 9-Mo)
3.4
3.3
3.2
3.1
3
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Empowerment in Service System
(FES Service System Subscale)
3.6
3.5
3.4
P=.012, ES=.42
3.3
P<.01 (BL vs. 9-Mo)
3.2
3.1
3
2.9
2.8
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
FTF
Control
Empowerment in Community (FES
Community Subscale)
3.6
3.4
3.2
3
P=.005, ES=.50
FTF
Control
2.8
2.6
P<.001 (BL vs. 9-Mo)
2.4
2.2
2
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Knowledge Test
70
68
66
64
62
P=.016, ES=.40
P<.001 (BL vs. 9-Mo)
FTF
Control
60
58
56
54
52
50
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Subjective Burden (FEIS Worry
Subscale)
3
2.9
2.8
2.7
2.6
NS
FTF
Control
2.5
2.4
2.3
2.2
2.1
2
P<.001 (BL vs. 9-Mo)
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Subjective Burden (FEIS
Displeasure Subscale)
3
2.9
2.8
2.7
2.6
NS
FTF
Control
2.5
2.4
2.3
2.2
2.1
2
P<.001 (BL vs. 9-Mo)
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Emotion Focused Coping (COPE
Acceptance Subscale)
14
13.8
13.6
13.4
13.2
P=.006, ES=.38
P<.001 (BL vs. 9-Mo)
FTF
Control
13
12.8
12.6
12.4
12.2
12
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Emotion Focused Coping (COPE
Positive Subscale)
13
12.8
12.6
12.4
12.2
12
11.8
11.6
11.4
11.2
11
P<.01 (BL vs. 9-Mo)
FTF
Control
NS
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Distress (CGI Anxiety Subscale)
55
54
53
52
51
50
P<.01 (BL vs. 9-Mo)
FTF
Control
P=.04, ES=.26
49
48
47
46
45
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Distress (CGI Depression Subscale)
55
54
53
52
51
50
P<.001 (BL vs. 9-Mo)
FTF
Control
NS
49
48
47
46
45
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Distress (CGI Global Score))
55
54
53
52
51
50
P<.01 (BL vs. 9-Mo)
FTF
Control
P=.081, ES=.22
49
48
47
46
45
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Family System Functioning
(Problem Solving Scale)
13.5
13.3
13.1
12.9
12.7
12.5
12.3
12.1
11.9
11.7
11.5
FTF
Control
P=.02 (BL vs. 9-Mo)
P=.019, ES=.30
Lower scores reflect
Better functioning.
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
Family System Functioning (General
Functioning Scale)
30
29
28
27
26
25
24
23
22
21
20
P<.01 (BL vs. 9-Mo)
NS
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
FTF
Control
Experience of Caregiving (ECI
Positive Scale)
5
4.9
4.8
4.7
4.6
P=<.001, ES=.46
P=.20 (BL vs. 9-Mo)
4.5
4.4
4.3
4.2
4.1
4
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
FTF
Control
Experience of Caregiving (ECI
Negative Scale)
16
15.5
15
14.5
14
13.5
P=<.001 (BL vs. 9-Mo)
NS
13
12.5
12
11.5
11
Pre-F2F
3-Month
FTF=133, Control=126
9-Month
FTF
Control
FTF Classes Attended by FTF
Participants
Percentage of Participants
80
68
70
60
50
40
30
20
13
10
9
10
1 to 4
5 to 8
0
None
Number of Classes Attended
9 to 12
Distress (CGI Depression Subscale)
Those Who Attended at least one Class)
55
54
53
52
51
50
P<.001 (BL vs. 9-Mo)
FTF
Control
P=.03
49
48
47
46
45
Pre-F2F
3-Month
FTF=116, Control=126
9-Month
Depression (CESD)
Those Who Attended at least one Class)
10
9.5
9
8.5
FTF
Control
8
P=.03
P=.053 (BL vs. 9-Mo)
7.5
7
6.5
Pre-F2F
3-Month
FTF=116, Control=126
9-Month
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
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?
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.
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.
Fit With Qualitative Study
New Info.
& Support
Early


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
Engmt
Insights &
Acceptance
Emotional
Changes
New
Tools
&
Skills
New Ways
of Acting
Immediate
Benefits
Global
Benefits
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
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
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
Timeline
PORT Contract
(92-97)
NIMH Center Grant
(95-00)(Steinwachs),
K Award (95-99)
RWJF Grant
FTF Controlled
Trial (2000-2002)
NIMH R01 Randomized
Trial (2005-2009)
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)
Thanks to all for making this
happen!
For further discussion,
if time
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.
Letting go of ‘‘trying to control
everything’’
It helped me to see there is nothing I can do
to solve the problems she has, but there
are ways I can help.
Feeling better “equipped”
Literally, the next two days after I had that
communication class, [my daughter] called me up
and bawled me out. And I tried everything and it
didn’t work (laughter) but I felt better for having
tried it. Because sometimes nothing’s going to
work no matter what you do—[but] I had
something to try.
Multifaceted Effects
I just don’t think my parents knew how to handle it well
and they didn’t know what steps to take and so bringing
them to NAMI was huge for me and for them because it
just showed them there’s a million things we can be doing
that we’ve never even thought about doing before.
Multifaceted Effects
The NAMI program actually saved our marriage. As a matter of fact,
may even have saved my wife’s life. Gaining insight into the illness
has given me the strength to keep working on the relationship.
Learning what I know about depression has helped me make better
decisions when my wife is getting symptomatic. Emotionally I feel a
lot stronger, a lot better. That’s the word I want to use.