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The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops

The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops. Dr Emma O’ Donoghue – Senior Clinical Psychologist / Study Co-ordinator & Lucy Butler - Research Assistant South London and Maudsley NHS Foundation Trust. With thanks to the ACT for Recovery Team ( ACTfR ).

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The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops

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  1. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Dr Emma O’Donoghue – Senior Clinical Psychologist / Study Co-ordinator & Lucy Butler - Research Assistant South London and Maudsley NHS Foundation Trust

  2. With thanks to the ACT for Recovery Team (ACTfR) Emma O’Donoghue Joseph Oliver Eric Morris Louise Johns Suzanne Jolley Lucy Butler HernikaAmisten Shirley Serfaty The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  3. Overview of Talk • ACT for Recovery • Design of study • Role of Service User Co-facilitators • Findings from workshop participants • Findings from facilitators or ACT therapists • Reflections The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  4. ACT for Recovery Project The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  5. Aims of Project • Implement the first RCT of ACT workshops for people with established psychosis and their caregivers • Assess the feasibility, cost effectiveness and impact on service use of ACT workshops for clients with psychosis and their caregivers • Assess the feasibility of training service user co-facilitators and frontline mental health staff to deliver ACT workshops for service users and caregivers The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  6. ACT for Caregivers • Informal caregivers play a key role in service user care and recovery • Service users with carer support can experience fewer admissions, shorter inpatient stays, and improved quality of life • Negative impact of the caregiving role on carer physical and mental wellbeing • 80% of carers report feelings of burden and distress in their role The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  7. Project Design The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  8. ACTfR Protocol • Four 2-hour weekly sessions • Followed by two, 2-hour booster sessions 8 weeks later • Protocol based on passengers on the bus metaphor • Use of actor-video to allow participants to approach content at their own pace • Main components include • Values clarification • Mindfulness/noticing exercises • Willingness • Defusion • Committed action- out of session planning The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  9. Design and Measures • Randomized Control Trial • Introduction/Taster session → Randomized • ACT Intervention immediate vs Wait-list control • Wait-list cohort offered ACT intervention 4 months later • Four measurement points 1 - 0 weeks (baseline) 2 - 4 weeks (post intervention) 3 - 12 weeks (post booster sessions) 4 - 36 weeks (extended follow-up) The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  10. Participants • Over 2013 we will recruit total of 96 participants: • 48 client participants (with established psychosis) • 48 caregiver participants • Facilitators • 16 service user co-facilitators • 16 frontline mental health staff co-facilitators The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  11. Role of Service User Co-Facilitators The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  12. Within Workshops Recovery orientated services emphasize ‘expertise by experience’ along with evidence based practice We wanted an additional perspective from a peer in the workshops Value in having peers model lived experience of engaging in willingness and mindfulness We wanted to create an atmosphere where people would feel comfortable sharing their experiences The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  13. Service User Involvement • The right for Service Users or representatives to be involved in the planning and development of services (NHS Constitution, 2009) • Users of health and social care services and their carers should expect to be involved, not only in individual care planning, but also in the development, provision and monitoring of services. • Still a lack of SU involvement in actual facilitation of clinical interventions • Complements South London and Maudsley’sRecovery College The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  14. Recruitment

  15. Training and Supervision • 1 day training (mental health staff and SU co-facilitators) • Experiential exercises • Role play practice • Problem solving • Detailed manual provided • Weekly supervision group • Paid for attendance • Weekly pre and post session feedback The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  16. Feedback on SU Involvement The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  17. Feedback from Client Participants - Themes • Usefulness • Excellent/very helpful • Unaware that facilitators were service users • Felt like one of the team • Expert by experience • More understanding due to shared experiences • Gave credibility due to similar experiences • Could relate more • Hope • Ambassador for recovery • Put things into perspective The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  18. Feedback from Client Participants - Quotes “I think it was useful that a person who has gone through the experience of having a mental illness wants to share their thoughts and feelings…. The comments showed that they had similar experiences which improved their credibility. I felt I could open up more”. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  19. Feedback from Client Participants - Quotes “She understood as she’s been through it…” “I didn’t know they were a service user…. It would have been better if they had spoken about this more… It could have encouraged other people to be involved in the project”. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  20. Feedback from Carer Participants - Themes • Usefulness • Excellent/very helpful • Unaware that facilitators were service users • Felt like one of the team • Expert by experience • More understanding due to shared experiences • Gave credibility due to similar experiences • Could relate more • Hope • Gave hope that change was possible • Wonderful example of someone who is doing well • Sense of connectedness • Could relate more to them - were in the same boat The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  21. Feedback from Carer Participants - Quotes “I found it useful. It gave me hope that people’s lives can be changed… That we were all going through it together.” “Looking back and comparing them to my son is useful… he could do something like this one day.” The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  22. Feedback from Carer Participants - Quotes “It brought us together about being human, particularly for carers as we always focus on the service users as being so different.” The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  23. Feedback from Front-line Mental Health Staff Co-Facilitators Themes • Expert by experience • Added credibility / validation • Increased group cohesion/engagement • Role model • Hope to participants • That recovery is possible • Reduced power differentials • Participant/facilitator divide • Potential impact on psychological well-being of SU co-facilitators • Painful ‘passengers’ may arise • Mental health crises The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  24. Feedback From SU Co-Facilitators The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  25. Feedback from SU Co-Facilitators - Themes • Universality • Felt equal with other co-facilitators • Other facilitators are human (fallible) • Personal use of ACT skills • Promoting own recovery • Learning by example • ACT skills modeled by facilitators • Personal growth • Confidence • New skills The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  26. SU A Quote “One of the things that stood out for me the most was the um, sticky labels exercise, I remember, you know, looking the other therapists and being sort of surprised that other people had, you know, issues that, you know there’s kind of the assumption all the time that therapists and people in this industry, sort of, they’re perfectly fine and they don’t have any hang-ups and that was a real eye-opener and actually very helpful to see.”  The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  27. SU D Quote 1 “it was probably the first time I felt a proper equal to the professionals, erm, which is, you know, not a bad thing. So I thought it was really well done, it was kind of a good balance of kind of theory and practice.” The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  28. SU D Quote 2 “The bus metaphor, was quite helpful, for example if you’re a voice hearer, you’re not giving the voices more power that they have actually, not assuming they have the power and even negative thinking, or issues around self worth – those are just passengers, they’re not, it’s not truth... Yeah, you don’t remember that all the time, but when you do remember it it’s helpful. And the exercise with the clipboard, pushing or it covering you up, that was  quite good, that was very powerful exercise". The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  29. SU G quote 1 “Um absolutely, there’s a thing called Passengers on the bus, it’s a metaphor, and um yeah I still kind of use it today, I find it quite, very useful, and I like the whole kind of concept for our life you know, we pick up these thoughts, feelings and stuff and um, it can be a friend or foe, you know what I mean, and um the fact, I like the actual thing where, you know, you can’t actually eradicate them, and it’s futile when you try to, it’s actually painful when you try to, but when you work with them, you know, accept that they’re on board, and work with them, I seem to sort of get more things done….”. “Especially with the passengers on the bus thing, so we’d come back and we’d feedback on, you know, what’s been going on with us since the last time we met, and in that I would mention, you know, um, for instance you know I’m an addict, I’ve been clean for 5 years and I’d mention that and how I deal with that today, the things that are useful and what kind of passengers are, you know what sort of passengers that conjures up. And I think it helped people to open up a bit and get some identification, to feel a bit of similarity with each other”  The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  30. SU C Quote 1 “it was also nice to be working with another therapist where they were very honest about their own worries regarding sticking to the script, you know, sticking to the ACT principles um, and not trying to problem-solve with the client, that was actually nice to have that level of um, openness, and yeh I found it enjoyable. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  31. SU C Quote 2 “I found it actually quite, er interesting, to see how the therapists I worked with were willing to make themselves vulnerable. They were willing to allow themselves into it, which is very um, uncommon in conventional therapeutic space, and I’ve had lots of experience in therapy space where the therapist tries not to do that, tries to remain detached, disconnected almost. Um,I found that really interesting”. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  32. SU C Quote 3 “My self image has changed… I see myself differently, erm some of the stigma that I experienced which I internalized um, has, is no longer impacting on me the way it was before. I think that’s a direct consequence of the ACT training…” “I don’t want to go into too many details, but It’s also allowed me to tackle stuff that in the past I left to one side, emotional stuff, which I would never have been able to start toconfront: I think that’s the wrong word, I mean at least to approach, which only came back as a direct consequence of what I learnt in the ACT”. The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  33. Reflections The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  34. Practical Issues • Needing to realistically adapt to accommodate for SU consultants • Printing out worksheets/manual • Memory issues, • Anxiety in groups/mental health issues, • Time keeping • Preparation for sessions • Disclosure of SU experience • Need for ‘careful’ recruitment SU co-facilitators • Extra training and debriefing recommended The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  35. Reflections • Pros and cons of Service User involvement • Feedback from participants and Service User co-facilitators was very positive • Increased pressure on lead facilitator to remain ACT consistent • Balance between coaching, supporting and teaching • Difficult task to step into • We recommend identifying specific exercises that can be facilitated • Extra training and experience required • Stepped model of running further groups with increased responsibilities once they have observed lead facilitator model exercises The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  36. Questions/ Comments The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  37. The ACT for Recovery Project is generously funded by The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

  38. Contact Details Dr Emma O’Donoghue Senior Clinical Psychologist / Study Coordinator – ACT for Recovery Project South London and Maudsley NHS Foundation Trust Emma.ODonoghue@slam.nhs.uk Emma.O’Donoghue@kcl.ac.uk The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)

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