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?

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His

tory

Fam

ily

Friends

Work

EducationSexu

alityP

olit

icsSpirit

uality

Hopes & Dreams

Values & Beliefs

PERSON

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Family

Work

History

Values

Spirituality

Friends

Education

Politics

Mental

Illness

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PEER SUPPORT AS A REACTION AND CREATIVE RESPONSE TO

Loss of Sense of Self Loss of Connectedness

GuiltShame Isolation

Loss of Power Loss of Valued Role Loss of Hope

Spaniol et al 1999

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Pe

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yan

Ma

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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”

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 Securing 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)

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 themOf 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 groupsDrop-in centresSpecialised peer services (ward based/crisis,

unemployment, homelessness)WRAP groupsLifelong 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 operatedService user-centredOperate in socially inclusive ‘normative’ settingsBut 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

Lifelong learning approaches as a key, core process –

1. Learning opens possibilities of the ‘power of narrative’ 2. Learning doesn’t assume a mental health services context.3. Learning together doesn’t assume one of you is an ‘professional expert’4. 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 well-being—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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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

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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http://www.promoteacceptance.samhsa.gov/

WELL-BEING IMPROVED BY INTENSITY OF COSP USE

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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

• 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 Toolbox

Daily Maintenance Plan

Triggers and an action plan

Early warning signs and an action plan

When things are breaking down and an action plan

Crisis Planning

Post Crisis Planning

WRAP CURRICULUM• 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

• 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

post-baseline, & 8 months post-baseline by (blinded) interviewers

OUTCOMES

• 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 participateo 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 • In a multivariable longitudinal random-effects regression

analysis, WRAP recipients improved more than controls from T1 to T3 on multiple outcomes:

o Reduced psychiatric symptom severityo Increased hopefulnesso Decreased coping through self-blameo Increased quality of life o Increased self-advocacyo Increased recoveryo Increased empowerment

ADDITIONAL FINDINGS

• The greater the % of WRAP classes attended, the greater WRAP participants’…o Reduction in overall symptom severityo Reduction in depressive symptomso Reduction in symptoms of anxiety o Increased quality of lifeo Increased sense of recovery

Empowerment of Mental Illness service users: Life Long Learning, Integration and Action

European Framework 6 funding 3.4 million Euros 18 centres across Europe

3) EMILIA RYAN ET AL (2012) EMPOWERMENT, LIFELONG LEARNING

AND RECOVERY IN MENTAL HEALTH PALGRAVE

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)

RESEARCH IN EMILIA

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

CNT’D 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.html

Service User roles as:

Trainers\educators Researchers\auditors Students/learners

THE MIDDLESEX LIFELONG LEARNING INTERVENTION

IMPACT

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 health-related 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.

 

“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)

SALUTOGENESIS: 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 (two-tailed). 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.

SOC: 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 product-moment 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.

SENSE OF COHERENCE

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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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)

WHY DOES PEER SUPPORT WORK? THE POWER OF THE NARRATIVE

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!

Service user

Life event(s)Illness

Sense of Coherence

Stress

Life Long Learning

Interpersonal relationships, social support

Hope

Skills

Recovery

Social Inclusion

REFERENCES 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 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.