Transcript Recovery and the “Movement”

PEER SUPPORT: WHAT IS THE EVIDENCE?
Why has peer support emerged?
 What is it? What forms does it take?
 What is the evidence?
 Why does it work?

PERSON
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History
Mental
Illness
Education
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PEER SUPPORT AS A REACTION AND
CREATIVE RESPONSE TO
Loss of Sense of Self
 Loss of Connectedness
 Guilt
 Shame
 Isolation
 Loss of Power
 Loss of Valued Role
 Loss of Hope
Spaniol et al 1999

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IMPACT OF ILLNESS
People are trying to cope with:
Trauma from the illness and loss of sense of personal
identity

Being (initially at least) a passive recipient of mental
health services

Dealing with stigma/”the helping relationship”
Peter Ryan March 2013

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HISTORICAL AND POLICY CONTEXT
Service User/Consumer/Survivor Movement of
1980s and 1990s
 Self help, empowerment, advocacy
 New Zealand, USA, UK
 The Emergence of Recovery: power of Service user
narratives e.g. Patricia Deegan
Recovery as a Journey of the Heart (1996)
Recovery; the Lived Experience of
Rehabilitation(1998)

DEVELOPMENT OF PEER SUPPORT

By the turn of the 21st century, the push for recovery and
the use of peer support services accelerated across the
UK, Canada, United States New Zealand and Australia
as Peer Support initiatives matured, diversified, and
increased in numbers.
In UK: 2008 onwards - Emergence of ‘Recovery Centres’
…

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THE ARRIVAL OF NEW POLICY
our Future Health – Wanless 2002
 Mental Health and Social exclusion 2004
 Our Health, Our Care, Our Say 2006
 The Next Stage Review 2008 –personal health
budgets
 The NHS Constitution 2008 –rights to respect
and choice
 Ireland –A vision for a recovery model in Irish
mental health services (2005)
 Scotland –Rights, Relationships and Recovery
(2006)
 No Health without Mental Health (2011)
 Securing
RECOVERY AND PEER SUPPORT
Same core values?
 Peer support builds upon the value system which has
evolved in the ‘recovery movement’
 Peer support puts this into practice in terms of activities,
services and modes of delivery

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CORE VALUES FOR RECOVERY/PEER
SUPPORT

Recovery/peer support is about building a meaningful and satisfying life,
as defined by the person themselves, whether or not there are ongoing or
recurring symptoms or problems

Represents a movement away from pathology, illness and symptoms to
health, strengths and wellness

About discovering - or re-discovering a sense of personal identity,
separate from illness or disability - The language used and the stories
and meanings that are constructed have great significance as
mediators of the recovery process – the power of narrative

Hope is central to recovery and can be enhanced by each person seeing
how they can have more active control over their lives (‘agency’) and by
seeing how others have found a way forward

Self-management is encouraged and facilitated.
RECOVERY/PEER SUPPORT

The helping relationship between clinicians and service
users moves away from being expert/patient to being
‘coaches’ or ‘partners’ on a journey of discovery

Clinicians are there to be “on tap, not on top”

People do not recover in isolation. Recovery/peer support
is closely associated with social inclusion and being able
to take on meaningful and satisfying social roles within
local communities, rather than in segregated services
WHAT IS PEER SUPPORT?

Whilst a shared lived experience of mental distress is
fundamental to peer support, it also needs to address
other shared experiences, identities and backgrounds.

Peer support has to be based on certain values and
ethos, including empathy, trust, mutuality and reciprocity,
equality, a non-judgemental attitude.

Contexts and support that people describe as ‘peer
support’ do not always fit neatly into definitions of
‘intentional’, ‘formal’, ‘informal’ or ‘naturally occurring’
peer support. (Faulkner, 2011)
WHO IS A PEER?
75%: more than a shared personal experience of mental
distress in common with them
Of these:
 76%: shared ideas about what recovery means
 73%: shared understandings of specific diagnoses and
their effects
 58%: shared views about medication and other
treatments
 55%: shared gender, ethnic background, sexual
orientation, age groups, faith etc.
 For respondents from BME groups, 66% said shared
ethnic/cultural background; understanding of
marginalisation and barriers

A PEER IS…
“ someone who has had their own experience that
resonated with mine and so we can support each
other in a way that is personally useful… Someone
who can help me think through what is happening
to me rather than tell me what is happening to me
based on their experience.”
PEER SUPPORT MODELS

Varies widely in the forms it takes. Can include:
 Self-help/self management groups
 Drop-in centres
 Specialised peer services (ward based/crisis,
unemployment, homelessness)
 WRAP groups
 Lifelong Learning groups (eg EMILIA)
 Peer phone/facebook/twitter initiatives
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PEER SUPPORT COMMON INGREDIENTS

While many of the details of peer support models appear
to be different, at the heart of them is a common set of
peer structures, beliefs, and practices that are intended
to recognize and nourish personal strengths and
personhood and support a quality life for participating
peers.

The systematic identification of cross-cutting elements
common to peer programmes produced a list of “common
ingredients” and an objective rating system to measure
program fidelity and conduct quality improvement (Holter,
Mowbray, Bellamy, MacFarlane, & Dukarski, 2004;
Johnsen, Teague & McDonel Herr, 2005).
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PEER SUPPORT COMMON INGREDIENTS
Programme characteristics
 Service user operated
 Service user-centred
 Operate in socially inclusive ‘normative’ settings
 But not always – eg peer support on wards
 Values
 Embrace the principles of choice, hope,
empowerment, recovery, diversity, spiritual growth,
and self help/self management
 Programme elements
 Encourage participants to “tell their stories” of illness
and recovery – the power of narrative
 Engage in formal and informal peer support

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PEER SUPPORT PROGRAMME
ELEMENTS (CNT’D)
Mentoring and become mentors/or leaders
 Learning self-management and problem-solving
strategies
 Learning a ‘recovery strategy’
 Expressing themselves in innovative and creative
ways
 And advocating for themselves and other peers

 In
socially inclusive, ‘normative’
environments
A DISTINGUISHING FEATURE
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1.
2.
3.
4.
Lifelong learning approaches as a key, core process –
Learning opens possibilities of the ‘power of narrative’
Learning doesn’t assume a mental health services context.
Learning together doesn’t assume one of you is an ‘professional expert’
Everyone learns from the basis of their own lived experience

Designed AND delivered by peers

To peers

Or to peers and professionals
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DOES IT WORK? PEER SUPPORT
RESEARCH

Until recently, mental health services research has
focused primarily on the effectiveness of traditional
mental health modalities and programs to treat mental
illness.

Mental health services research has neglected to
consider peer support as producing positive outcomes
that lead to recovery for persons with mental illness.
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1) PEER SUPPORT CONSUMER OPERATED SERVICES
PROGRAM (COSP) MULTI-SITE RESEARCH INITIATIVE
After a decade of research on eight peer support
programmes located across the United States (1998–
2008) (Goldstrom, Campbell, Rogers, Lambert, Blacklow,
Henderson & Manderscheid, 2005).
 4: peer support drop in centres
 2: peer support lifelong learning and advocacy
programmes
 2: peer support approaches to individuals and groups
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COSP STUDY RESULTS

Analysis of more than 1,800 participants in the
randomized, controlled trial revealed that those offered
peer support services as an adjunct to their traditional
mental health services showed significant gains in wellbeing—hope, self-efficacy, empowerment, goal
attainment, and meaning of life—in comparison to those
who were offered traditional mental health services only.
http://www.promoteacceptance.samhsa.gov/
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CHANGE IN WELL-BEING OVER TIME
* COSP = Consumer-Operated Service Programs
TMHS = Traditional Mental Health Services
http://www.promoteacceptance.samhsa.gov/
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COSP STUDY RESULTS
The greatest gains in well-being were found for the
participants who used the peer support services the
most.
 Variations in well-being effects across sites were
unrelated to formal COSP models of peer support service
delivery.
 Most important, analyses of COSP common ingredients
and outcome results established evidence of a strong
relationship between key peer practices that support
inclusion, peer beliefs, self-expression, and an increase
in well-being outcomes.
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WELL-BEING IMPROVED BY INTENSITY OF COSP
USE
http://www.promoteacceptance.samhsa.gov/
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CONCLUSION?

As an adjunct to traditional mental health services
(TMHS), participation in COSPs by adults with
serious mental illness had positive effects on
participants’ subjective well-being

Analyses of COSP common ingredients and
outcome results established evidence of a strong
relationship between key peer practices that
support inclusion, peer beliefs, self-expression, and
an increase in well-being outcomes.
2) WRAP INTERVENTION STUDY: COOK J &
COPELAND M SCHIZOPHRENIA BULLETIN MARCH
2011
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Intervention lasted for 8 weeks
Met for 2 and ½ hours every week
Followed a highly standardized curriculum designed by
Mary Ellen Copeland
Facilitator curricular innovations discouraged
Used a detailed Facilitators Manual and Overhead
Slides
WRAP (WELLNESS RECOVERY ACTION PLAN)
 Wellness
 Daily
Toolbox
Maintenance Plan
 Triggers
 Early
and an action plan
warning signs and an action plan
 When
things are breaking down and an action plan
 Crisis
Planning
 Post
Crisis Planning
WRAP CURRICULUM
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Session 1: Key concepts of WRAP & recovery
Session 2-3: Identify personalized wellness strategies.
Engage in exercises to enhance self-esteem, build
competence, & explore benefits of peer support.
Session 4: Create daily maintenance plan (simple,
inexpensive strategies) to stay emotionally and physically
healthy. Create plan for recognizing & responding to
symptom triggers.
Session 5: Identify early warning signs and how these
signal a need for additional support
Session 6-7: Create crisis plan specifying signs of
impending crisis, names of individuals willing to help, &
types of assistance preferred.
Session 8: Create plan for post-crisis support & learn how
to retool WRAP plan after a crisis to avoid relapse.
Graduation ceremony
WRAP STUDY DESIGN
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Recruited at CMHC & peer support programmes
Subjects were randomised to receive WRAP right away or 9
months later
Telephone interviews at study entry (baseline), 2 months postbaseline, & 8 months post-baseline by (blinded) interviewers
OUTCOMES
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Recovery – Recovery Assessment Scale
Empowerment – Empowerment Scale
Self-Advocacy – Pt. Self-Advocacy Scale
Social Support – Medical Outcomes Study
Hopefulness – Hope Scale
Quality of Life – WHO QOL
Symptoms – Brief Symptom Inventory
Coping – Brief Cope Scale
Stigma – Mental Illness Stigma Scale
Physical Health Perceptions – MOS
STUDY PROCESS
• 850 individuals screened for Waves 1-5
o 680 eligible & agreed to participate
o 555 (82%) completed Time 1 interviews
• 276 randomized to E group, 279 C group; 7% combined
attrition; E=251, C=268
• Ss attended average of 5 classes (out of 8)
o 53% attended 6+ groups; 16% attended 0 groups (still
counted as receiving WRAP)
• Average fidelity=91% over all waves (90% wave 1-92% wave 5;
no site differences)
STUDY PARTICIPANT CHARACTERISTICS
• 66% female, 34% male
• Average age: 46 years, range from 20-71 years old
• 63% White, 28% Black, 2.9% American Indian/Alaskan
Native, <1% Asian/Pacific Islander, 7% other
• 4.8% Hispanic/Latino
• 82% High school graduate/GED or more
• 88% unmarried
• 67% living in their own home or apartment
• 76% had been hospitalized for psychiatric reasons
• Most common self-reported diagnoses: 38% bipolar disorder;
25% depression; 21% schizophrenia spectrum
• 85% not employed; 51% expected to work next year
No sig. differences by study condition
WRAP OUTCOMES
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In a multivariable longitudinal random-effects regression
analysis, WRAP recipients improved more than controls
from T1 to T3 on multiple outcomes:
o
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o
o
o
o
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Reduced psychiatric symptom severity
Increased hopefulness
Decreased coping through self-blame
Increased quality of life
Increased self-advocacy
Increased recovery
Increased empowerment
ADDITIONAL FINDINGS
•
The greater the % of WRAP classes attended, the greater
WRAP participants’…
o Reduction in overall symptom severity
o Reduction in depressive symptoms
o Reduction in symptoms of anxiety
o Increased quality of life
o Increased sense of recovery
3) EMILIA RYAN ET AL (2012)
EMPOWERMENT, LIFELONG LEARNING
AND RECOVERY IN MENTAL HEALTH
PALGRAVE
Empowerment of Mental Illness service users: Life
Long Learning, Integration and Action
 European Framework 6 funding 3.4 million Euros
 18 centres across Europe

RESEARCH IN EMILIA
8 case control-follow up
 Basic structure: baseline and follow up at 10 and 20
months
 two strands: organisational and individual
 Organisational: demonstration sites as Learning
organisations
 Service Use (CSSRI)
 Individual: quality of life assessment (SF-36) and
interviews
 @ Middlesex: Sense of coherence scale (SOC)

EMILIA LIFE LONG LEARNING PACKAGES
Developed by service users for service users
 Taught by service users
 No entry requirements

Recovery *
 Strengths Approach*
 User Leadership – Powerful Voices*
 Research Skills*
 Teaching Skills *
 * Accredited courses at Middlesex University
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CNT’D
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Working with post traumatic stress (PTSD)
Social Network Support
Suicide Prevention
Social and community Competences
Dual Diagnosis
Employers and Colleagues
Working with Families
*******
 Personal Development Planning online
 Training the Trainers
 Website:
http://www.entermentalhealth.net/EMILIA_2/emilia.htm
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THE MIDDLESEX LIFELONG LEARNING
INTERVENTION
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Service User roles as:
Trainers\educators
 Researchers\auditors
 Students/learners

IMPACT

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An increase from 7.3% in competitive paid employment
at baseline to 14.6% at 20 month follow-up and there
were similar increases in voluntary employment
Significant increase in disposable income, and a
marginal increase in the participants’ mental healthrelated quality of life at 20 month follow-up
Increase in average number of paid hours normally
worked in a week from .3 of an hour at baseline and to
3.23 hours at 20 month follow-up
Significant reduction in mean number of days of
admission in a psychiatric hospital at baseline was 14
and at the 20 month follow-up it was reduced to 7 days.
SALUTOGENESIS: SENSE OF COHERENCE

“a global orientation that expresses the extent to
which one has a pervasive, enduring though
dynamic feeling of confidence that one’s internal
and external environments are predictable and that
there is a high probability that things will work out
as well as can reasonably be expected”
(Antonovsky 1987)
SOC: SENSE OF COHERENCE

Results revealed that there was a significant
increase in SOC-13 scores from baseline
(M=29.54, SD=12.23) to a 10 month follow-up point
(M=34.82, SD=10.80), t(21)=-2.58, p<.05 (twotailed). The mean increase in SOC-13 scores was
5.36 with a 95% confidence interval ranging from 9.69 to -1.04. The eta squared statistic (.24)
indicated a large effect size.
SENSE OF COHERENCE

The relationship between sense of coherence
(measured by the SOC-13 scale) and mental health
related quality of life (measured by the SF-36V2
scale) was investigated by using Pearson productmoment correlation coefficient There was a strong
positive correlation between SF-36V2 mental health
related quality of life and SOC-13 scores at both
baseline r = .689, n = 22, p < .0005 and follow-up r
= .792, n = 22, p < .0005.
CONCLUSION: PEER SUPPORT – THE EVIDENCE
–DOES IT WORK?

Peer support study results suggest a promising
evidence-base

Peer support approaches promote well-being, and a
reduced use of mental health services

When offered as an adjunct to the treatment of mental
illness, they promise mental health service users a more
stable, meaningful and coherent (connected) life in the
community.
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WHY DOES PEER SUPPORT WORK?
THE POWER OF THE NARRATIVE

People make sense of the world through stories
(Mischler, 1986)

The “self” is viewed as socially constructed and formed
through shared language (DeSocio, 2005)

Self is seen as “an unfolding reflective awareness of
being-in-the-world” (Ochs & Capps, 1996)
NARRATIVE CONSTRUCTION OF “SELF”
As our narratives shape how we remember events,
our beliefs about what is important to our “selves”
are shaped and formed.
 In addition to representing fragments of
experiences, narratives represent fragments of our
“selves”. In the telling of a single narrative, we only
evoke certain aspects of “self” to represent specific
beliefs, values, and experiences.
 The “self”in a single narrative may be presented as
public or private, past or present, subject or object,
normal or abnormal (Ochs & Capps, 1996).

NARRATIVE CONSTRUCTION OF “SELF”

The ability to create coherent narratives of past
experiences may play a pivotal role in resilience and
well- being

Much empirical research now supports the link between
narrative characteristics, such as coherence and emotionality,
and well-being
An increase in narrative coherence over time, as well
as a shift in focus to thoughts and feelings rather than
concentrating on the facts, is associated with less
distress and anxiety and also better physical health
(Foa, Molnar & Cashman, 1995; Pennebaker, 1997).


Baerger and McAdams (1999) have found that high levels of
coherence in life story narratives are associated with lower
levels of depression, higher life satisfaction, and more
happiness
LIFELONG LEARNING AND SOCIAL INCLUSION:
IN PRACTICE!
Feeling
Empowered
Dealing with
frustration
Changing
Self Esteem
Being
Assertive/
Independent
Feeling
Hopeful
Adjusting
Internal
Functioning
Identifying
Personal
Strengths
Experiencing
symptom
interference
Dealing with
Legal Issues
Service
user
Applying
Strategies
Using Drugs
Engaging in
Activities
Adjusting
External
Functioning
Changing
academic
performance
Changing
Daily
Functioning
Looking
for/or having
employment
Life event(s)
Illness
Recovery
Stress
Life Long
Learning
Social Inclusion
Sense of Coherence
Hope
Skills
Interpersonal
relationships,
social support
REFERENCES
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Andresen R, Oades L, Caputi (2003) The experience of recovery
from schizophrenia; towards an empirically validated stage model.
Australian and New Zealand Journal of Psychiatry, 37, 586-594.
Anthony W A (1993) Recovery from mental illness; the guiding vision
of the mental health service system in the 1900s. Psychosocial
Rehabilitation Journal, 16, 11-23.
Craddock N. et al (2008) A wake up call for British psychiatry. The
British Journal of Psychiatry, 193, 6-9.
College of Occupational Therapists (2006) Recovering ordinary lives
the strategy for occupational therapy in mental health services 2007
– 2017. London: COT.
Davidson L, McGlashan TH (1997) The varied outcomes of
schizophrenia. Psychiatric Services, 57, 642 – 645.
REFERENCES
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Deegan P (1996) Recovery as a journey of the heart.
Psychiatric Rehabilitation Journal, 19 (3), 91-97.
Deegan P (1998) Recovery; the lived experience of
rehabilitation. Psychosocial Rehabilitation Journal, 11, 11-19.
Hope R (2004) The 10 essential shared capabilities: a
framework for the whole of the mental health workforce.
London: DH.
Gould A, DeSouza S, Rebeiro-Gruhl KL (2005) And then I lost
that life: a shared narrative of four young men with
schizophrenia. British Journal of Occupational Therapy, 68
(10), 467-473.
National Institute for Mental Health in England (2005) NIMHE
Guiding statement on recovery. Available at www.nimhe.org.uk
Shepherd G, Boardman J, Slade M (2008) Making recovery a
reality. London: Sainsbury Centre for Mental Health.