Peer Support: What is the evidence?

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?

History Family Values & Beliefs Friends PERSON Work Hopes & Dreams Education Spirituality Sexuality Politics 2

Family History Work Politics Friends Values Mental Illness Education Spirituality 3

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 4

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 5

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’ … 7

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 9

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 16

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). 17

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 18

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 – 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 20

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. 21

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 22

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/ 23

Change in Well-being Over Time * COSP = Consumer-Operated Service Programs TMHS = Traditional Mental Health Services http://www.promoteacceptance.samhsa.gov/ 24

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. 25

Well-being Improved by Intensity of COSP Use http://www.promoteacceptance.samhsa.gov/ 26

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 • 680 eligible & agreed to participate • 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) • 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: 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’… Reduction in overall symptom severity Reduction in depressive symptoms Reduction in symptoms of anxiety Increased quality of life Increased sense of recovery

3) EMILIARYAN 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 forservice 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

The Middlesex Lifelong Learning Intervention • Service User roles as: • Trainers\educators • Researchers\auditors • Students/learners

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.

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 (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.

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.

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. 46

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! Service user

Peer Support: What is the evidence?