Future directions for peer support: the ENRICH trial and quality standards for peer support programmes in mental health services Steve Gillard St George’s, University of London

Why do we need quality standards for peer support? Peer support is ‘no better or worse’ than other forms of support (Pitt et al 2013; Lloyd-Evans et al 2014)… … but detail about what peers do, how it is different to other forms of support and how it is associated with change is under-reported Plus, we know from other research that where: −the peer support role is functionally similar to other support roles −teams weren’t expecting a peer or haven’t been prepared to work alongside peers −or peers feel unsupported or unsafe in the role Then the ‘peer’ element of the support can be eroded and the role can revert to a generic support worker role (Schmidt et al 2008; Berry et al 2011; Gillard et al 2015)

Peer support is a naturally occurring phenomenon Emergence of peer support as an intentional approach to providing mental health support in the survivor and service user movements (Munn-Giddings et al 2009) When peer support is intentionally provided the ‘values’ at the core of naturally occurring peer support peer support need to be maintained (Mead et al 2001; O’Hagan 2010) Represents a huge challenge when we attempt to do this in a highly standardised organisational culture (Stewart et al 2008) such as the NHS Peer support as a ‘values-based’ approach

ENRICH and a values-based approach to intervention development and evaluation No value in adding to the ‘no better or worse than’ literature Needed some way of assessing the extent to which it is ‘peer support’ we are evaluating (and not some other form of support delivered by peers) In order to properly understand what it is about peer support that might bring about change…

Tactics… 1.Peers would do something different to existing roles (peer support for discharge) 2.Change model describing the mechanisms of peer support and relationship to outcomes (Gillard et al 2014) 3.A set of ‘principles’ would underpin the development of the intervention 4.The same principles would inform a trial fidelity index

Rationale for a ‘principles’ approach a)There are values or qualities to peer support that both characterise peer support and differentiate it from other forms of support for mental distress b)When peer support is mobilised as a form of mental health service delivery or intervention those values can be diluted or eroded by the constraints of organisational culture c)Evaluation is likely to indicate that outcomes for peer support services are no better or worse that other forms of support where those values are not integral to the peer support service or intervention

Developing the principles PROLIFIC Fidelity Index Our earlier research Literature Review National Expert Panel

The peer support relationship is grounded in meaningful (context specific) shared lived experience There is reciprocity in the peer support relationship (a two way process) Mutuality (respect, equality & community) underpins the peer support relationship Individuals retain choice & control over sharing their lived experience Experiential knowledge is valued as instrumental to peer support Support for peer support reflects and enacts these values Ownership & leadership in peer support is retained by peers Peer support works by empowering & enabling (and not by directing) New Ways of Working in Mental Health Services: a qualitative, comparative case study assessing and informing the emergence of new peer worker roles in mental health services in England

National Expert Panel 10 people with lived experience of developing and leading peer support services in the NHS & voluntary sector Card sort based consensus exercise Step 1 – independently identify 5 principles that underpin the implementation of peer support into practice (total of 50 ‘principles’)

NON- DIRECTIVE Trust the person has their own answers MUTUALITY (ability to be on same level) 10 NO NOTE TAKING (at least not without notes being written by client and wanted by client) CO- PRODUCTION Led by service users (at individual and service level) Equal peer relationships (i.e. not professionalised) PEER LEADERSHIP LEVEL POWER BALANCE Needs of PSW key Authoritative power relations MUTUALITY (listening and learning from each other's lives with sensitivity to make space/ let peer- client have voice - express her/ himself) MUTUALITY Mutual/ Equal No power hierarchy Support given and received CO- OPERATION Genuinely mutual relationship RECIPROCITY EMPATHY (and other respecting relationality) SIGNPOSTING Information, human rights Time/ continuity (take care that peer- client has a human right to being distressed & confused after crisis - kindness & informed patience) Peer Plus NON- DIRECTIVE Trust the person has their own answers Models achievable change Framework (tools, knowledge...) NON- DIRECTIVE MUTUALITY (ability to be on same level) LEVEL POWER BALANCE Authoritative power relations Framework (tools, knowledge...) LEVEL POWER BALANCE Authoritative power relations

National Expert Panel Step 2 – together sort those 50 cards into ‘meaningfully similar’ groups Groups photographed and notes taken of discussion about sorting process …

National Expert Panel Step 3 – research team uses photos and notes of discussion to name and define a set of principles Output shared with panel members by and names/ definitions refined

14 POWER & LEADERSHIP MUTUALITY (including empathy & reciprocity) ENABLING (NOT DIRECTING) Validating (recognition & acknowledgement) TRUSTING, SAFE RELATIONSHIP THERAPEUTIC QUALITIES (including compassion, hope, friendship) CONNECTIVITY SHARED LIVED EXPERIENCE

Values & principles from literature review Narrative review of one-to-one peer support in mental health (all study types) Peer reviewed (65) and grey (10) literature Data on values & principles extracted into data extraction table Data coded and organised into groups (similar to thematic analysis of qualitative data)

Lived experience Grounded in shared experience (x2) Grounded in personal/ lived experience Mutuality Validating experiential knowledge Promoting acceptance & meaning Validating service user knowledge (triggers etc) ‘Truth telling’ (validating and invalidating behaviours, beliefs etc. through sharing lived experience) Empowerment Promoting autonomy (x2) Supporting independent decision making Supporting ownership of risk decisions Strengths-based approach (empowerment) Supporting peer support values Infrastructure to support peer working Supervisor understanding of peer role Balancing mutuality (with peers) with organisational demands Recovery focus to whole-organisation (values base to support for peer support) Avoiding over professionalisation High professional standard (but without over professionalising role) x3 Role clarity (x4) Therapeutic qualities Commitment to helping others Non-judgemental Non-directive Respectful Person –centred (x2) Relationship Forming therapeutic relationships Supportive relationship Bridging and connecting (not treating) Bringing power Independence/ power in performing work role Embodying recovery FROM LITERATURE REVIEW

‘principle’ National Expert Panel TEAMLIT REVIEW MutualityXXGrey lit Power & leadershipX X (+ ownership, choice & control) X (bringing power) Enabling not directingXXX (empowerment) ValidatingX X (experiential knowledge) X Trusting, safe relationship X X (based on shared lived experience) X Therapeutic qualitiesX(in mutuality)X ConnectivityX(in mutuality)(in relationship) Shared Lived Experience XXX Reciprocity(in mutuality)XGrey lit Support for peer supportXX Combined principles

Sharing lived experienceXXXXX Working with boundaries & relationships XXXXX Keeping well at workX X Working with risk and safety X X Understanding the discharge transition & mental health services X X X Local & individual ‘asset mapping’ X X X Discussing difficult issuesXXXXX Cultural competency & understanding diversity XXXXX Using communication skills XXXXX Using strengths-based approaches XXXXX Competencies Principles 1. Safe trusting relationships built on the sharing of lived experience 2. Mutuality & reciprocity 3. Applying experiential knowledge 4. Leadership, choice & control 5. Non-directive, strengths-based approach Applying the principles to developing the ENRICH training

Applying the principles to developing the PROLIFIC fidelity index Workshop with our National Expert Panel on different ways of measuring fidelity Panel generated ‘concrete indicators’ of fidelity for each of our five principles across the domains of the ENRICH intervention…

Organisation & team Supervision & support Delivery Training Role description/ recruitment Domain Principle Safe, trusting relationships built on sharing lived experience Mutuality & reciprocity Applying experiential knowledge Leadership, choice & control Non-directive, strengths-based approach Principles-based matrix for the fidelity index

Using the PROLIFIC fidelity index Telephone interviews in 6 randomly selected weeks during 18 months of intervention delivery at each site Index will enable us to: −Describe the extent to which implementation of the ENRICH intervention in each side (and over time) corresponded to the principles of peer support −Estimate the extent to which any observed differences in effectiveness (between sites and over time within sites) might be explained by intervention fidelity Hopefully enables us to demonstrate the extent to which we were actually measuring the effect of peer support Offers a tool that can be used in the development and implementation of peer support services more generally