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

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

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

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

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).

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

• 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

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

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

Study Design

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

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

Role of Service User Co-Facilitators

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

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

Feedback on SU Involvement

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

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”.

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”.

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

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.”

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.”

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

Feedback From SU Co-Facilitators

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

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.”

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.”

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 ".

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”

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.

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”.

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”.

Reflections

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

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

Questions/

Comments

The ACT for Recovery Project is generously funded by

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 Dr Emma...

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