Can we count what counts for the user? Broadening the shape of

Can we count what counts for the user? Can we count what counts for the user?

Michael Barkham

Centre for Psychological Services Research

University of Sheffield

Savoy Place, 2008

Centre for Psychological Services Research.

Broadening the shape of evidence

© Centre for Psychological Services Research

AcknowledgmentsAcknowledgments

• Rosemary Barber

• Eleni Chambers


Researcher perspectiveResearcher perspective

• Can we count what counts for the user?

• Are we counting what counts for the user?

• Can we do anything about this?

Probably

Possibly. Possibly not

We can try


How do we measure experiences?How do we measure experiences?


PositionPosition

• Strong tradition in research methods and measurement based on group design & analyses using nomothetic, research-derived measures

• But all (nomothetic) methods & measures have limitations

• Build a better science by using complementary methods and measures

• But this requires collective effort

• Argue a place for individualized (idiographic) measures

• Because these have the potential for capturing each individual user’s unique concerns

• As a method - a complementary approach - rather than advocating any specific measurement tool


What are individualized measures?What are individualized measures?

• User defines the content in their own language

• Draws directly from clinical assessment

• Notion of clinical significance can be embedded in

each item

• Can be operationalized along points indicative of:

• High state of psychological distress

• Improvement

• Recovery

• Completed often - tracking change


The shape of changeThe shape of change

© Centre for Psychological Services ResearchBarkham et al., (1993). The shape of change in psychotherapy: Longitudinal assessment of personal problems. Journal of Consulting and Clinical Psychology, 61, 667-677.

The shape of measurementThe shape of measurement

• We need to have a shape to our measurement:

• Variety applies to method of measurement as well as content

• Pluralistic but realistic in approach

• Individual service users have ownership of a measure

• Difficulties with idiographic:

• Scoring has been cumbersome: But significant development in IT measurement systems

• Variability: But change is not necessarily a straight line & there is clinical value of discordant/missing data

• Difficulties with nomothetic

• Mandated measures can become problematic: So give variety and/or choice


Towards a more ‘complete’shape of measurement

Towards a more ‘complete’shape of measurement


ConclusionsConclusions

• We have a robust pool of nomothetic measures and can

afford/need to complement with methods tapping user-

specific items

• PQ and other methods deserve revisiting in light of increasing

availability of IT measurement platforms

• Need to adapt our research methods to the phenomenon

under investigation

• Users and practitioners need a system which:

• Includes generation of user-centred quantitative information on outcomes that reflects the richness of human experience and the variety of individual differences

• But need to broaden the shape of evidence by adopting a position of equipoise regarding differing methods of measuring the impact of psychological therapies


What counts for the user

Psychological Therapies in the NHS

November 2008

12

Key research objectives

TO DISCOVER

� How therapy is seen through a customer lens

� Perceptions

� Experiences

� Needs

� Wishes for improvement

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Method and sample

Twelve, three-hour group discussions72 respondents, balance of m/f, demographics, NHS/private

Age Prospective users Short-term users Long-term users

16 - 24One group

London

One group

Grimsby

One group

Leeds

25 - 59Two groups

London

Two groups

London

Leeds

Two groups

London

Grimsby

60+One group

Grimsby

One group

Leeds

One group

London

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Did our sample perceive therapy as useful?

MediaExposure

Interestin

innerworld

ConfusionStigma

Yes

But two main problems ..

Belief that it

can work

15

The problems: stigma

~Stigma is about …

– Having a mental problem

– Weak and self-indulgent

“You think people will ridicule you”

16

“I have an image of a client over here, and a therapist over there - each on their own island. It’s a winding path between the two -full of obstacles about language, and different types of therapy, and stigma. The path between the two needs to be cleared.”

The problems: confusion

Therapy a daunting and alien world

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How do people seek therapy?

� Distress levels override the barriers eventually

� Then, it’s a classic distress purchase

� Based on very little knowledge, and loose criteria

~ Chemistry

~ Qualifications assumed

~ Professional membership and accreditation (therapy ‘Corgi’) are alien criteria

18


� Many don’t have a choice

� Simply take first offering ..

~ Through GP (often drugs)

~ A friend who knew someone ..

� Most ‘end up with’, rather than choose, a therapist

19


“It’s almost like

searching for a soul

partner. It’s difficult to

find, and there’s no

system for judging

whether that person’s

right for you. And it’s

difficult to say ‘No, you

don’t work for me.”

“It’s almost like

searching for a soul

partner. It’s difficult to

find, and there’s no

system for judging

whether that person’s

right for you. And it’s

difficult to say ‘No, you

don’t work for me.”

For those in a position to choose – it’s a maze

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What do they want – and what ‘works’?

I wanted to understand why I’m the way I am

I wanted to understand why I’m the way I am

I didn’t want to open

Pandora’s box

I didn’t want to open

Pandora’s box

I didn’t find it helpful for

someone to try and control

my negative thoughts

I didn’t find it helpful for

someone to try and control

my negative thoughts

I wanted advice,

structure and practical tools

I wanted advice,

structure and practical tools

I just wanted someone to

talk to

I just wanted someone to

talk to

It’s a case of different strokes for different folks

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Do people get what they want?

“Some therapy experiences go round in circles or turn out to be dead ends, and with others you find the light at the end of the tunnel.”

Given the search lottery – success is hit and miss

22

Clients on successful therapy

You want clarity - a shared understanding of

what you’re going to achieve.

You want clarity - a shared understanding of

what you’re going to achieve.

I needed different things at different times.. You need to know how to discriminate and choose according to your needs.

I needed different things at different times.. You need to know how to discriminate and choose according to your needs.

It’s good when the therapist finds out what you really want. So you’re not fitting into their world .. they’re fitting into what you want.

It’s good when the therapist finds out what you really want. So you’re not fitting into their world .. they’re fitting into what you want.

23

Clients on successful therapy

24

Clients on unsuccessful therapy

� “It was a waste of time. She just

sat there and went ‘Mm’. You go

into a cold room with a clock, pour

your heart out and then leave.”

� “I found it incredibly difficult to open

up. I felt as if I was being watched

by a CCTV camera.”

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What they do when it goes wrong

� Usually … leave … disaffected

� Or persevere unhappily

� Little sense of what else to do other than talk to therapist

~ Reluctance to do this

~ And it doesn’t always help

– “The trouble is they bounce it back on you.”

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Key conclusions

� People in distress are interested in therapy – yet put off by the

stigma

� They vaguely know what type of therapy they want – but don’t know what it’s called or how to get it! They ‘buy blind’ or are

dispatched

� It’s a maze – with no customer-friendly reference point

� The fit between therapist/modality and user seems to be key to

success - yet finding the right fit is a lottery

� So it’s too easy to end up dissatisfied

27

Key conclusions

� Customers are often not proactive in their choice and use of

therapy

� Passivity and ignorance can lead to dissatisfaction

� Conflation of customer and client roles is a problem and blocks

empowerment

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What they want

� Greater availability

� Less stigma, mystery and fear

� Help in finding what helps me

� Be better informed

� Be more empowered in the process

� Less professional distance, more warmth

What could help

� IAPT!?

� Better public image. Positive language

� Customer friendly reference point. Explain

choices. Support choice and trial

� What is therapy, what will happen, how to

use it. Correct wrong assumptions

� Shared goals and evaluation. Reference

point outside dyad. Dissatisfactions not

only be viewed through a therapeutic lens.

Out of unhelpful therapy sooner

� Welcoming reception and environment

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Is giving people what they want professionally misguided?

� No (though common sense applies!)

� All therapy modalities work – so why not let people choose?

– Especially since the right fit seems to help

� Good client outcomes correlate with customer satisfaction:

– Positive perceptions of therapist

– Belief in the therapy rationale

� Active client participation also correlates with good outcomes

– We need to encourage active mindset – right from point of choice

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In short ..

� Our research and academic evidence suggests that …

Satisfied customers become well clients

� “therapy works if clients experience the relationship positively, perceive

therapy to be relevant to their concerns and goals, and are active

participants”

The Heroic Client, Duncan, Miller and Sparks, 2004

Can we count what counts for the user?

Judy WeleminskyChief Executive

26 November 2008

Promoting recovery

Counting or communicating?

� Clients don’t seek numerical change� Clients do want:

– To feel better– To understand their issues– To become competent in addressing their issues

� The challenge is to achieve agreed ways to communicate

– Where am I now?– What needs to change?– How will I know I’m making progress?

� And….

Reliably measuring change

� The concept of the journey of change� A common journey across varied issues

� Understanding the steps on the journey

� Describing the steps� Valid for the user

� Valid for the therapist

� Great for the alliance!

� Steps which are meaningful and understandable� Enabling progress to be illuminated

� Clarifying the next steps

� Feedback for client and therapist

The journey of change

Five key steps:

� Stuck

� Accepting help

� Believing

� Learning

� Self reliance

Recovery and hope

� Learning to manage your mental health and

well being

� Overcoming negative behaviours

� Improving relationships and social networks

� Increasing identity and self esteem

� Regaining trust and hope

The Recovery Star

� Starts with the service user

� Focuses on progress not problems

� Encourages people to think of recovery as a journey with different stages

� Multi dimensional

� Looks at the whole person

� A tool enhancing the therapeutic relationship

� Enables progress measurement by clients, therapists and managers

� Very visual – allows for quick understanding and interpretation

Recovery Star – ten areas

Multifaceted and

personalised

Trust and hopeIdentity and self

esteem areVery important

Watching your world get bigger…

And bigger…

“I love this, it’s all about ME!”

� Acknowledges the service user as the expert� Shifts the power balance from staff/services to

individuals

� Encourages the service user to take the lead� Enhances communication between staff and service

users

� Helps service users find the language to express where they are and where they might like to be

� The results are meaningful and easy to understand� Encourages self examination and reflection

From not even thinking about work

From the glimmers of hope ..

To growing resilience, self belief and self

Stuart Couldsell – ex service user

participated in the development of the Mental health Recovery star

� Before staff would give me support if I was in crisis but otherwise I was left alone.

� Because I was calm and settled, I didn’t attract their attention but in fact a lot of the time I was very low.

� I wanted to be - a more rounded person with a more rounded star.

� I had written myself off� I saw myself as a dead man walking,

� The Star showed me that there were things that I could do

� When you are ill the thought that you can be well seems very daunting

� The Star breaks it down into baby steps and you start to feel: � Yes, I can do this.

� For the first time it felt like they were seeing me as a person rather than as a problem

� that really built my confidence and gave me hope.

� Now I am working as a support worker in a drop-in centre for people with mental health problems

Adapting the Star approach

� Aspiration Star for young people

� Care pathways Star for those moving

between services

� Wellbeing Star?

� Organisation evaluation Star

� Linking with CORE and other measures

Conclusions

Progress counts

We can chart progress

Progress is a great feedback tool

- for clients

- for therapists

- for relationships

- for services

Can we count what counts for the user? Broadening the shape of

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