jean campbell, ph.d. program in consumer studies & training missouri institute of mental health
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Transforming Mental Health Services Through the Use of Evidence-Based and Emerging Best Practices Columbia River Doubletree June 3-4, 2004 Peer Support & Peer-Run Programs. Jean Campbell, Ph.D. Program in Consumer Studies & Training Missouri Institute of Mental Health. New Studies & Tools. - PowerPoint PPT PresentationTRANSCRIPT
Transforming Mental Health Services Through the Use of Evidence-Based and Emerging Best Practices
Columbia River Doubletree June 3-4, 2004
Peer Support & Peer-Run Programs
Jean Campbell, Ph.D.
Program in Consumer Studies & TrainingMissouri Institute of Mental Health
New Studies & Tools
"Science itself is just a tool for achieving human ends; what the political community decides are appropriate ends are not ultimately scientific questions."
--Francis Fukuyama, Our Post Human Future, 2002. NY: Farrar, Straus. p 186
Peer Support Outcomes Peer Support Outcomes ProtocolProtocol Project (POPP)Project (POPP)
Development of an Evaluation Protocol for Community-Based Peer Support Programs
(1996-2001)
Case for ActionCase for Action A Need for Measurement
– To survive in an era of evidence-based funding, peer support programs need to measure:• cost, • effectiveness, • quality, • utilization, and • appropriateness of the services they
provide.
Case for Action (cont.)Case for Action (cont.) A need for accountability
– To build partnerships between members, program administrators, and external agencies
– To improve current programs and tailoring future efforts to
– To demonstrate utility and effectiveness to funding partners
– To advocate for programmatic efforts and to guide policy– To recruit members and develop community support
Case for Action (cont.)Case for Action (cont.) Why a Peer Developed Protocol? As peer support programs continue to grow, so does
the need for an outcomes protocol with measures derived from mental health consumers’ experiences and points of view– The POP:
• was developed by consumers• can be administered by consumers• embodies consumer values• is consistent with peer support philosophy• recognizes and utilizes proven consumer
abilities to conduct survey and outcome studies
Overview of the POPPOverview of the POPP Purpose:
– To develop, field-test, and distribute an evaluation protocol that measures outcomes and satisfaction of community-based peer support programs that are operated by mental health consumers/survivors.
– Four Phase Project (1996-2001) Conducted by:
– Protocol and support materials developed and piloted by the Program in Consumer Studies and Training at the Missouri Institute of Mental Health in St. Louis.
Funded by:– The National Research and Training Center on Psychiatric
Disability at the University of Illinois-Chicago
Utility of the POPPUtility of the POPP Assess program outcomes for consumer self-
help field Present service outcomes to public funding
authorities and manage-care organizations Provide feedback to consumer-run
organizations, enabling consumers with information to improve the organization and delivery of peer support programs
POPP Outcome Domains
Demographics Service Use Employment Housing/Community LifeQuality of LifeWell-Being (Recovery, Empowerment & Personhood)
Program Satisfaction
Specific outcome domains organized into individual modules:
Characteristics of Characteristics of ProtocolProtocol Measures 7 domains Designed to be done face-to-face Independent domains can be separated
– Avoids burdening respondents– Flexibility to tailor to program needs and goals
Criterion-related validity (POPP & Criterion Scales) Criterion Social Acceptance Scale with Recovery
(.55) Criterion (Rosenburg) Self-Esteem Scale with
Personhood (.76) Criterion Recovery Scale with Recovery (.63) Criterion Empowerment Scale with Empowerment
(.46) Criterion (QS-8) Satisfaction Scale with Program
Satisfaction (.55)
Psychometric RefinementPsychometric Refinement
Final ProtocolFinal Protocol Seven Modules (with 14 scales)
– Demographics– Service Use– Employment – Community Life
• Final Factor Structure accounted for 60% of the variance
Test-Retest – ranged from .46-.82
– Quality of Life– Well-Being– Program Satisfaction
Barriers to Using the POPBarriers to Using the POP Requires information system to effectively manage
and utilize information Requires support and openness to feedback from
members of Peer Support Programs Potential lack of experience and/or training
resources to collect, analyze and feedback information
POPP Supporting Resources– Interviewer Training Manual
– Question by Question Guide for Interviewers
– Tool Kit
– Report on POP Psychometrics
Overcoming BarriersOvercoming Barriers
Consumer-OperatedService Program (COSP)Multisite Research Initiative 1998-2004
COSP Baseline Findings: Participant Characteristics
State of the Evidence
Prior studies of consumer-run programs suggest that they improve symptoms, promote larger social networks, and enhance quality of life. However, the evidence is limited:
-uncontrolled studies-demonstrations of feasibility-preliminary findings
Importance of Multisite Study Determine cost-effectiveness of consumer-
operated programs-What works for whom at what cost?
Such evidence is necessary for consumer-run programs that seek to be partners in the community continuum of care-Funding & employment opportunities
Study results can promote new programs, improve quality of existing programs , expand services for people not easily engaged in traditional services, & reduce costs
Goals of the Study• Establish the extent to which
consumer-operated services when offered as an adjunct to traditional mental health services are effective in improving selected outcomes for people with severe mental illness
• Create strong and productive partnerships among consumers, service providers and service researchers
• Disseminate the knowledge gained
Program Models »Drop-in Centers
»Educational & Advocacy Training
Programs
»Peer or Mutual Support Services
Participating Study Sites
Connecticut
Florida/California
Illinois
Maine
Missouri
Pennsylvania
Tennessee
Research DesignFour Year StudyRigorous Methodology
Experimental Multisite DesignRandomizationBaseline, 4, 8 & 12 month follow-upsCommon Protocol
Intervention: Consumer-Operated Program + Traditional Mental Health Services
Control: Traditional Mental Health Services Only
Selected Outcomes
Employment Empowerment Housing Service
Satisfaction Social Inclusion Costs Well-being
1,827 Study Participants!
Largest Study of Consumer Programs
in History
Demographics
There were more females (60%) than males (40%) among multisite participants.
Slightly less than half (43%) were minorities or individuals who described themselves using two or more race categories.
The average participant age was 43 years old.
Demographics
Only 13% of participants were married at baseline with another 23% having a “significant other” to whom they were not married.
On the other hand, 53% reported having children, averaging one child per parent.
Approximately half of the parents indicated their children were under the age of 18 years.
Education & Employment
More than half of the participants had achieved at least a high school diploma, with 42% going beyond high school.
Although nearly all participants (97%) had been employed at some point during their life, and 77% said that having a paying job was important to them, only about one-third (29%) were working either for pay or as a volunteer at the time of the baseline interview.
Employment & Benefits
Whereas 19% received income from paid employment (including a sheltered workshop), a substantial proportion of participants received income from non-employment sources, including:– Social Security (84%) income – Other social welfare benefits (40%), – Rent supplements (24%).
Benefits
– Most participants (79%) were receiving benefits that covered their psychiatric care, although only 59% reported that their benefits covered all the services they needed.
Housing
Although about half of the participants had been homeless at some time in their lives (51%), most participants’ living situations at baseline were fairly stable – 85% reporting that there was no time limit on
how long they could stay at their current place of residence. Note that this percentage does not indicate how many individuals may have wished to move from their current housing situation but were unable to do so; data were not collected on desire to change current housing.
Housing
More than half of the participants lived in their own residences at the time of the baseline interview (58%),
16% lived in someone else’s residence,
19% lived in temporary housing; and only 2% were currently homeless.
About one-third of participants were living alone (36%).
Housing
Of the two-thirds of participants who lived with someone else, –41% lived with another mental health consumer– 29% lived with a spouse or other live-in partner– 15% lived with their parents–28% lived with their children –14% lived with other family members–27% lived with a non-related person
Housing
Overall, the housing situation of participants was positive, especially when compared to the fairly high rate of past homelessness reported by these same individuals.
Diagnosis
Nearly half of the participants were diagnosed with Schizophrenia and Schizoaffective Disorder (47%)– 31% Schizophrenia, 16% Schizoaffective Disorder
Depression was diagnosed for 25% of the participants
Bipolar Disorder for 18%. Other major diagnostic categories represented
among COSP participants included Anxiety Disorders, Dysthymia, and Psychotic Disorders other than Schizophrenia.
Diagnosis
Secondary diagnoses on Axis I were found in a small number (11%) of participants with 76% of those with more than one diagnosis having substance-related disorders.
The majority of these substance-related, secondary diagnoses were reported for participants in one study site that specifically provides services to a dually-diagnosed population.
Psychiatric Treatment History
Most participants had been hospitalized for psychiatric/emotional problems at some point in their lives (82%) with 25.8 years old being the average age at first psychiatric hospitalization.
Although 85% of these participants had been hospitalized more than once, and 62% had from 2-10 hospitalizations, relatively few participants reported any hospitalization for only a psychiatric reason within the four months prior to baseline (16%).
Psychiatric Treatment History
The average first age of any psychiatric contact – whether that was hospitalization or outpatient treatment – was 23.2.
Almost all participants reported that they had been taking prescribed psychiatric medications within the past four months (96%), and/or had seen a psychiatrist in the past four months (89%), with 91% engaging in both treatment activities.
95% reported experiencing side effects from psychiatric medications.
Psychiatric Treatment History
These percentages reflect a high level of participant involvement in the traditional mental health service delivery system.
Program Model Differences
Most of the characteristics of participants were significantly different across the program models. – The percentage of men in the study was lower for the
education/advocacy programs than for the drop-in centers and mutual support programs.
– The percentage of white participants was lower for the mutual support programs, as was the average age.
– The percentage of study participants who were married was greater for those in the education/advocacy programs.
Program Model Differences
– A higher percentage of drop-in center participants had received some Social Security income in the 30 days previous to the baseline interview. However, these participants did not appear to have the most severe illness as indicated by age at first psychiatric contact and lifetime history of hospitalization.
– The study participants in the mutual support programs had the youngest age of first psychiatric contact, and were more likely than participants at other sites to report 5 or more lifetime hospitalizations for psychiatric/emotional problems.
Program Model Differences
– However, the Hopkins Symptom Checklist (HSCL) indicated that participants of drop-in centers reported the lowest degree of symptoms, as did the Colorado Symptom Index Psychosis Subscale (CSIP).
– Study participants in the education/advocacy programs were more likely to live in their own residence at baseline, and less likely ever to have been homeless.
– On the other hand, study participants in the mutual support programs felt they were more likely to have to move from their current housing within the near future.
Program Model Differences
– Diagnoses of participants in both the mutual support and education/advocacy clusters were nearly evenly divided between schizophrenia and psychotic disorders and mood and anxiety disorders.
– At the drop-in center sites, on the other hand, more study participants were diagnosed with Psychotic Disorders and fewer with Mood Disorders.