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The Role of Service User Co-facilitators in Delivering ACT
for Recovery WorkshopsDr 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)
Emma O’Donoghue
Joseph Oliver
Eric Morris
Louise Johns
Suzanne Jolley
Lucy Butler
Hernika Amisten
Shirley SerfatyThe Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
Overview of Talk
• ACT for Recovery– Rationale for study– 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)
SLaM Boroughs: LambethSouthwarkCroydonLewisham
Demographics of Lambeth• Two Promoting Recovery teams
serving borough of 283,000
• Shared caseload of almost 2,000; approx. 30 new/week
• High population density
• 5th most deprived borough in London
• Diverse community – fewer than half self-report white British ethnicity
• Very high psychosis incidence, high substance misuse, high levels of forensic history
• Estimated 1,500 psychosis carers
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
Promoting Recovery Services• Secondary care services provide
– Care co-ordination for clients who have severe and enduring psychosis
– Interventions for people with complex needs who have difficulty engaging with services and often require repeat hospital admissions
• Aim to support service users for a maximum of two years to support a return to Primary Care– Difficulties in discharging back to primary care
services – GPs report anxiety and feel unprepared and untrained
to manage the care of discharged clients
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
Promoting Recovery Services
• Over three quarters of people with psychosis are able to experience recovery to some degree.
• Personal recovery is defined as resuming, or finding new, individually valued, meaningful and rewarding activities and roles, irrespective of symptomatic improvement (Anthony, 1993).
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
Recovery Principle The ACT Approach
Finding and maintaining hope Hope is an active stance we can take. Feelings may come and go; out hopeful actions are a way we can change our world.
Encouraging self-management Our actions and choices can be judged by whether they are taking us in the direction of our values, rather than whether they are “right”, “make sense” or “look cool”. Learning from experience.
The re-establishment of a positive identity
Encourages contact with self as awareness, noticing the process of how our minds create stories about us. Instead of being entangled in the mind’s judgements, we observe whether they are useful for our chosen life directions.
Finding meaning in life Life's pain can be dignified if it is part of doing the things that are important to us. Through acting on personal values, contact with meaning is increased.
Taking responsibility for one’s life
We help people to be “response-able”: to act on their values rather than their fear, through developing an open, compassionate stance toward their own experiences& themselves.
National Institute for Health and Clinical Excellence
(NICE) Recommendations
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
• Cognitive Behavioural Therapy (CBTp) (16+ weekly/fortnightly sessions) offered to everybody with psychosis
• Family Intervention (FIp) (10+ sessions over 3-12 months) to everybody with a caregiver
ACT for Recovery Study
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
Aims of Study
• 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)
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)
Study Design
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
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)
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)
Participants
• Over 2013, we will recruit– 48 service user participants/clients (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)
Role of Service User Co-Facilitators
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
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)
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 SLaM’s Recovery CollegeThe Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
Recruitment
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)
Feedback on SU Involvement
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
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)
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)
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)
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)
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)
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)
Feedback from Front-line Mental Health Staff Co-Facilitators Themes
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
• 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
Feedback From SU Co-Facilitators
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
Feedback from SU 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)
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)
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)
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)
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)
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)
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)
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 to confront: I think that’s the wrong
word, I mean at least to approach”.
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
Reflections
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
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)
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)
Questions/
Comments
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)
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)
Contact Details
Dr Emma O’Donoghue
Senior Clinical Psychologist / Study Coordinator – ACT for Recovery Project
South London and Maudsley NHS Foundation Trust
Emma.O’[email protected]
The Role of Service User Co-facilitators in Delivering ACT for Recovery Workshops Psychosis Clinical Academic Group (CAG)