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Consumer-Operated Service Programs Results
Jean Campbell, Ph.D.Greg Teague, Ph.D.
E. Sally Rogers, Sc.D.Asya Lyass, M.S. Ph.D. (Cand.)
FROM INNOVATIONS TO PRACTICE: THE PROMISE AND CHALLENGE OF
ACHIEVING RECOVERY FOR ALLHyatt Regency Hotel in Cambridge, MA., on April 14, 2008
2
Background
Over the past three decades peer-run support services have matured, diversified, increased in numbers across the United
States
3
What is a COSP?
A Consumer–Operated Services Program is peer-run service program that is administratively controlled and operated by mental health consumers and emphasizes self-help as its operational approach.
Today, most COSPs operate as an adjunct to traditional mental health services within the continuum of community care.
4
COSP Service Models
Mutual Support Groups Drop-in Centers Education and Advocacy Programs Multi-Service Agencies Specialized Supportive Programs Warm Lines
5
Number of COSP Services
SAMHSA estimates there are 7,467 groups, organizations, and services run by and for mental health consumers and/or families in the United States (2002) 44.4% are mental health mutual support groups 40.4% are mental health self-help organizations 15.2% are consumer-operated service programs
6
COSP Effectiveness
Studies using non-randomized control groups or pretest scores as comparisons found that participation in peer support Reduces psychiatric symptoms Decreases hospitalization Enlarges social networks Enhances self-esteem and social functioning
7
COSP Effectiveness
Recent studies using randomized control groups and pretest scores as comparisons have found that participation in peer support promotes wellness (a sense of well-being). Hope Empowerment Social connectedness Meaning in life Self-esteem/personhood
8
COSP Study Overview
Eight program sites CA, CT, FL, IL, ME, MO, PA, TN
Three general program models Drop-In (4 sites) Mutual Support (2 sites) Education/Advocacy (2 sites)
9
Participating Study Sites
10
COSP Study Overview
One-year longitudinal follow-up 4 measurement points: 0, 4, 8, 12 months
Participants Persons 18+ with diagnosable mental / behavioral /
emotional disorder and functional impairment N = 1827 enrolled in study; 1600+ in analysis
Common interview protocol Logic Model Conventional RCT approach
Intent-to-treat analysis Optimized, common a priori hypothesis
11
Primary Hypothesis
Participants offered both traditional and consumer-operated services would show greater improvement in well-being over time than participants offered only traditional mental health services.
12
Well-Being Outcome Rationale
To develop a measure that was supported by theory and peer literature
Hypothesized to be most sensitive to primary peer support program effect
Short term outcome Realization of participants that “We are not alone.”
13
Composite Well-being Measure: Constituent Scales
Scales incorporated in Well-being measure (WB2) Total Herth Hope Index Meaning of Life Framework Subscale Empowerment / Making Decisions (EMD) Self-
esteem/ Self-efficacy Subscale Recovery Assessment Scale (RAS) Goal Subscale Recovery Assessment Scale (RAS) Hope Subscale
Internal consistency Cronbach’s alpha = .92 at all four measurement
points
14
Results: Well-being Over Time by Random Assignment Group
WB2 by Assignment Group - Overall
-.2
-.1
.0
.1
.2
.3
Base(N=1600)
4mo(N=1441)
8mo(N=1357)
12mo(N=1272)
TMHS, 797
COS+, 803
15
Intent-To-Treat Results for Well-being – All Sites
Increase in well-being over time for participants overall
Possible differences in change in well-being over time across sites
Significantly greater increase in well-being for persons offered use of COSP (p < .05) overall
Possibly important differences in this effect across site
16
Well-being Effect Sizes By SiteWB2 Effect Sizes by Site
-.4
-.2
.0
.2
.4
.6
1 2 3 4 5 6 7 8
ES
17
Well-being Effect Sizes By Site: Between Conditions & Within COSP+
WB2 Effect Sizes: Time, Condition by Site
-.4
-.2
.0
.2
.4
.6
1 2 3 4 5 6 7 8
ES-C
ES
18
Well-being Effect Sizes By Site: Between and Within Conditions
WB2 Effect Sizes: Time, Condition by Site
-.4
-.2
.0
.2
.4
.6
1 2 3 4 5 6 7 8
ES-T
ES-C
ES
19
Intent-To-Treat Results for Well-being – Seven Sites
Increase in Well-being over time for participants overall
No significant site difference in change in Well-being over time – very consistent positive ES for COSP across all 7 sites, along with positive trend for both groups
Significantly greater increase in Well-being for persons offered use of COSP (p < .01)
Negligible differences in this effect across site Site variations in experimental effect for this
outcome are driven by variations in TMHS programs
20
As-Treated Analysis Engagement rates and adherence to assigned condition
low 57% of participants assigned to COS+ used COS 15% of participants assigned to TMHS only used COS
Consequently, ITT results may be too conservative
Scores calculated for propensity to use COS
Analysis limited to middle third of propensity Removed those who especially seek/avoid COS Effects can be attributed to intervention, not selection Smaller N means positive findings are conservative
21
As-Treated Analysis: Two Measures of Engagement in COSP
Binary measure of simple engagement – visited at least once vs. didn’t use at all
Three-point measure of intensity of use No use Low use = less than study median (8.5 visits to
COSP over 12-month period) High use = more than study median
22
Well-being Over Time By Engagement (Middle 1/3 Propensity)
WB2 over Time by Engagement Group
-.2
-.1
.0
.1
.2
.3
Base(N=516)
4mo(N=479)
8mo(N=449)
12mo(N=404)
TMHS, 331
COS+, 185
23
Well-being By Intensity of COSP Use (Middle 1/3 Propensity)
WB2 by COS Use (Middle Propensity Group)
-.2
-.1
.0
.1
.2
.3
Base(N=516)
4mo(N=479)
8mo(N=449)
12mo(N=404)
High, 77
Low, 79
None, 360
24
COSP-Findings for Well-being
Significant gains in well-being were found for the group that was offered use of COSP (the formal experiment – intent-to-treat analysis)
Greater gains in well-being were found for the group of participants who actually used COSP services (as-treated analysis)
Greatest gains in well-being were found for the group of participants who used COSP the most, those in the upper half of frequency of use
Variations in effects across sites were unrelated to formal COSP type
25
Sub-Study: How is empowerment effected by involvement in consumer run programs
Why study empowerment?Many programs espouse empowerment as both
an aspect of the program structure (“empowering practices”) and as an outcome to be achieved
However, few rigorous studies of the effects of consumer run programs on empowerment exist
Most studies not randomized, small, descriptiveComplicating matters: there is no consensus of
the definition of empowerment
26
Sub-Study: Empowerment
Making Decisions Empowerment (MDE), 28 item scale to measure subjective feelings of empowerment: self-efficacy, perceived power, optimism about and control over the future, and community activism
Personal Empowerment (PE), 20 item tool with 2 subscales: Choice and Reduction in Chance
Organizational Empowerment (OME), 17 item scale about involvement in an community, organization or club
27
Purpose
Determine whether COSP sites varied with respect to differences between E & C or change over time
Describe pattern in change over time
Examine whether “engagement intensity” (binary or no, low, high use) resulted in greater changes in empowerment
28
Intent to Treat Results Results using strict (ITT) approach yielded marginal
results--perhaps due to modest engagement in the COSP
Results of ITT analyses with both measures of personal empowerment had overall results below threshold for significance and very small effect sizes
As with well-being analyses, one site obscured the more positive results from remaining sites.
Without this site, both measures showed a significant, small and positive effects
There was still significant cross-site variation remaining for PE Choice
29
Analysis of differences in slopes over time
No difference between groups over time
0
2
4
6
8
10
0 1 2 3 4 5 6
timeou
tcom
e C
E
Difference between groups over time
0
5
10
15
20
25
30
0 1 2 3 4 5 6
time
outc
ome C
E
30
Effect sizes for the difference in slopes between the experimental and the control group over time - MD
Site 1
Site 2 Site 3 Site 4 Site 5 Site 6 Site 7
Site 8
All
-0.6
-0.4
-0.2
0
0.2
0.4
0.6
Eff
ec
t S
ize
N=109
N=561
N=118
N=224
N=222N=143
N=133
N=93
N=1603
31
Differences between groups over time-personal empowerment
Sample items: “I can pretty much determine what will happen in my life” “People working together can have an effect on their community”
Half of the sites showed a positive difference between E and C groups in personal empowerment (MD) over time with an effect size of .2 or more
One site had a significant negative difference in change over time between E and C
One site had slight negative difference; remaining had no difference
Conclusion: positive effect on personal empowerment from participation in COSP
32
Effect sizes for the difference in slopes between the experimental and the control group over time - PE (Choice)
Site 1 Site 2 Site 3
Site 4
Site 5
Site 6
Site 7
Site 8
All
-0.4
-0.2
0
0.2
0.4
0.6
0.8
Eff
ec
t S
ize
N=113
N=115
N=559 N=225
N=223
N=143
N=133
N=93
N=1604
33
Differences between groups over time- PE-Choice
Sample item: “How much choice do you have about how you spend your free time”
Three sites had positive difference in change over time between E and C groups with effect sizes above .2
Five sites had a negative difference in change over time, or no change
Conclusion: Some COSP affect perception of choice
34
Effect sizes for the difference in slopes between the experimental and the control group over time - PE (Reduction in chance)
Site 1
Site 2
Site 3
Site 4
Site 5
Site 6
Site 7
Site 8
All
-0.6
-0.4
-0.2
0
0.2
0.4
0.6
0.8
1
1.2
Eff
ec
t S
ize
N=113
N=555 N=117 N=222 N=219 N=143
N=135
N=90 N=1594
35
Differences between groups over time-PE-Reduction in Chance
Sample item: “How likely is it that you will get enough to eat in the next month”
Two sites had positive differences in change over time between E and C
Six sites had no positive differences in change over time between E and C, or negative differences
Conclusion: Perception of life being left to chance or control over life not affected by COSP
36
Organizational Empowerment There was a general downward trend in
organizational empowerment but significant variation across sites
There was less decline among COSP programs than traditional programs
Data raises questions about the fit of construct “organizational empowerment” with COSP programs
Conclusion: Relatively few participants (in either condition) experienced an increase in the number of organizational roles or activities tapped in this measure.
37
As treated analyses
Needed to go beyond ITT analyses because of modest engagement in the COSP for experimental folks
Using a procedure described earlier and propensity scores, created two groups of balanced individuals
Individuals in both groups showed equal tendency to attend COSP
Yielded a better comparison of E and C participants
38
Results
Results of the as-treated analyses confirmed the inferences that emerged from the ITT analyses:
Use of consumer-operated services was positively associated with increases in personal empowerment as measured by both the MD and the PE Choice scales, results that held without significant variation across the eight sites. Gains from using COSPs become apparent only with higher levels of use.
39
Conclusions
Results support the conclusion that COSPs in general have a positive impact on aspects of empowerment (MD and PE Choice scales)
Some COSPs have the effect of improving empowerment, while others are less effective
Effects significant but small in magnitude and consistent with other studies
40
Conclusions
Individuals with greater engagement in and attendance at COSPs fared better in their personal empowerment outcomes
Additional analyses suggested positive changes in self-efficacy items: “I believe I am a person of worth”; “I am usually confident about the decisions I make”.
COSP may have more of an effect on self-efficacy than other aspects of personal empowerment
41
What is Fidelity?
Fidelity measures provide an objective rating system to assess the extent that components of a program are faithfully implemented according to intended program model, theory, or philosophy.
42
Why Measure Fidelity?
The use of fidelity measures has become a widely accepted methodological tool in mental health services research and serves a number
of important purposes.
43
Why Measure Fidelity?
In addition to establishing that a set of well-defined services leads to predicted outcomes, it is critical for researchers to establish the
integrity of the service delivery. Providers need to adhere to critical elements
of an evidence-based practice in order to achieve the positive outcomes identified in the original research.
44
COSP Fidelity Measurement
Common measurement, diverse programs Analytic challenges
Some theoretically important program aspects were not being measured
Comparison conditions were highly variable Initial program measurement goal
Develop cross-site program-level implementation measure
Assess interventions within traditional pooled data framework
45
Fidelity Assessment Common Ingredients Tool: FACIT
Process of Developing FACIT Identification of common ingredients Definition of common ingredients Feasible performance indicators (48 items) Performance anchors (typically 4-5) Involvement of COSP directors and staff as well as
researchers/evaluators at all stages of FACIT development process
Involvement of the CAP in the definition of common ingredients
46
FACIT Operationalization
Data collection During site visits, questions devised to elicit
information about common ingredients from program directors and program staff.
COSP recipient focus group Program observation
While FACIT was developed to measure characteristics thought to be common to COSPs, it was also used to measure the extent to which TMHS were “consumer-friendly.”
47
FACIT Operationalization
Independent rating After site visits, site visitors independently rated each
program on each dimension.
Conciliation Site visitors came to agreement on any dimensions on
which there was disagreement.
48
FACIT Operationalization
Pilot testing of FACIT (Round 1 site visits) Average interrater reliability of items .8; use of FACIT
feasible with both COSP and Traditional Mental Health Services
FACIT Psychometrics CIs present within COSPs Differences between COSPs and TMHS detected Differences among COSP models
49
FACIT Operationalization
COSP Fidelity Measurement (Round 2 site visits)
Analysis & further psychometrics Factor analysis and internal consistency within
major scales Identification of subscales for use in fidelity-
outcome analyses
50
FACIT Scales and SubscalesUsed in COSP Study
STRUCTURE Consumer Ownership Responsiveness
ENVIRONMENT Inclusion Accessibility
BELIEF SYSTEMS Peer Ideology Choice & Respect Spirituality & Accountability
PEER SUPPORT Encouragement Self-Expression
EDUCATION ADVOCACY
51
FACIT Scale Scores: COSP and Traditional Services
0 20 40 60 80 100
ADVOCACY
EDUCATION
PEER SUPPORT
BELIEFSYSTEMS
ENVIRONMENT
STRUCTURE
% of possible subscale total
COSP
TMHS
52
All overall FACIT scores for COSP were significantly higher than the score for any TMHS
Mean COSP scores were higher than TMHS on all main subscales
COSP scored higher than their respective TMHS on most subscales
FACIT Scores: COSP vs. Traditional Services
53
Comparing Fidelity & Outcome (COS+ vs. TMHS – 8 sites)
Sample Standardized Outcome and Fidelity By Site
-2
-1
0
1
2
1 2 3 4 5 6 7 8
s.d
.
Empowerment (MD) Mean of FACIT Process Scales
54
Mean Correlations: FACIT Scales and Selected Outcomes (8 Sites)
Mean Correlations of FACIT Scales With Outcomes(WB2, MD, Social Inclus & QOL, Life Sat)
-.4 -.2 .0 .2 .4 .6 .8
ADVOCACY
EDUCATION
PEER SUPPORT
BELIEF SYSTEMS
ENVIRONMENT
STRUCTURE
Pearson r
55
FACIT Process Scales & Selected Outcomes: Between & Within Programs
Correlation Coefficients: Mean FACIT Process Scores & Selected Outcomes - Experimental & Observational
.0
.1
.2
.3
.4
.5
.6
.7
.8
Emp (MD) Wellbeing Socializ Life Sat
Pe
ars
on
r
COS+ vs T-only All 16 programs over time
56
FACIT Process Scales and Specific Outcomes
FACIT Process Scales & Selected Outcomes (N=8)
.0
.2
.4
.6
.8
1.0
ENVIRONMENT BELIEF SYSTEMS PEER SUPPORT
Pe
ars
on
r
Empowerment Wellbeing Socializ Life Satisf
57
Key Ingredients Related To COSP Outcomes: Scales & Subscales
Environment Inclusion subscale: Low/no cost; protective
program rules; positive social environment; sense of community; lack of coerciveness
Belief Systems Choice & Respect subscale: Choices about
participation; acceptance and respect for diversity Peer Support
Self-Expression subscale: Artistic expression; participants telling own stories
58
Summary: Fidelity and Outcome Analysis COSP are effective in producing gains in
recovery-related domains over a 12-month period
Gains in these areas are strongly related to specific program (fidelity) ingredients, measured at the program level
Critical ingredients are stronger in COSP but are present in traditional programs as well
Critical ingredients related to other outcome domains, independent of program type (COSP TMHS) or experimental effect
59
COSP-Substantive Findings Evidence base for COSP as discrete
programs Adding COSP to traditional services adds to
well-being Effect is both incremental and compensatory:
impact is strongest where TMHS programs are weakest
Evidence base for recovery theory Program features specified for and found in
COSP are related to increases in well-being independent of setting
60
COSP-Policy Implications
Results provide evidence of COSP effectiveness
Results reinforce commitment to recovery–oriented services Particular consumer-supported program features
contribute to recovery and are effective across diverse settings
Program features central to COSP should also be fostered within TMHS
61
COSP Next Steps
COSP Recognized by SAMHSA as an EBP COSP Evidence-Based Practices Kit
developed KIT materials organized around FACIT domains and
common ingredients FACIT protocol available
KIT in field review
62
COSP Next Steps
“Raising All Boats” Initiative part of Missouri DMH Transformation Efforts FACIT implemented at 5 Drop-in Centers E-FACIT and Users’ Guide developed COSP ToolKIT tested in program training FACIT revised for piloting at 5 Warmlines FACIT results used to guide CQI efforts
6363
Using the e-FACIT As a Self-Assessment CQI Tool
Easy Administration (2 persons) Interviews with scheduled questions from protocol Focus groups Observation
Easy Scoring 48 items Anchored scoring
Easy Data Entry Excel 2003 program
Easy Charting The E-FACIT Workbook developed to automatically
produce charts
6464
Using the e-FACIT As a Self-Assessment CQI Tool
Conduct annual assessments CQI Team Outside evaluator
Share results with staff & membership Target areas to improve Develop Quality Improvement Plan
Implement COSP Toolkit (targeted areas) Revise or enhance programmatic approaches Augment staff supervision & training