1. Sarah Thurgood BSc (Hons) MSc MBPsS Researcher Leeds Addiction Unit
Perspectives in Outcome Measurement for Addiction Interventions
Leeds Addiction Unit
The NIHR CLAHRC for Leeds, York and Bradford
Development of a questionnaire to survey stakeholders views on outcome measures
SSA Conference
8th and 9th November 2012
Sarah Thurgood BSc (Hons) MSc MBPsS
Researcher
Leeds Addiction Unit

2. Why do we need this research?
Result Outcome package designed by professionals
Are measures meaningful and accessible to those who use them?
Consultation with LTLA and Leeds Researchers

3. Consultation
Learning to Live Again (LTLA): A service user led aftercare programme
Using a questionnaire design
Participants have knowledge of addiction
Leeds Researchers: A group of service users and carers who are interested in research
2 stage process to develop questionnaire
1. Exploring what are important outcome measures
2. Prioritising the outcomes for inclusion in questionnaire.

4. Stage 1
Identifying outcome measures considered important to service users, their friends and family in recovery from addiction.
Stage 1:
Generating a list of items
Stage 2:
Producing questionnaire
Stage 3:
Piloting the questionnaire
Stage 4:
Distributing questionnaire

5. Method Focus Group Agency Type Type of Activity Service Users
Family and Friends
FG1
NHS
Treatment 7 4
FG2
NHS/3rd sector
Drug Rehabilitation Requirement (DDR) 3 2
FG3
Harm reduction
FG4
SMART group
Recovery mutual aid
n/a
FG5
3rd sector
Recovery Service Users only
FG6
Recovery Family & Friends only 6
TOTAL 24 12

6. Findings
“I know that my treatment is working when I get up every day and just do the ordinary everyday things that people do, and I enjoy them”.
“So if that’s a craving, but you’ve got to deal with it... And you do find ways to get on and deal with it”
Being Better
Positive life Improvements when recovered
Reasons for use
Reasons for drink or drug use
Consequences of use
Negative impact on life when addicted
Process of change
Aspects involved in the process of recovery
“Like everybody thinks you’re a thief, everybody thinks you’re dirty, everybody thinks that you’re stupid, whatever, they just…”
“What happens when people have no money and things are getting worse, that's where they turn because they need that escapism, to drugs and alcohol”.

7. What is being better? Being better Relationships Social Situation
Self awareness
Abstinence
Activities
Health
Friends and family

8. Relationships
FG5: I see my wife three times a week sometimes ya know compared with nine months ago I didn’t see her at all
FG2: have you got new friends, have you got, you know, have you got a social circle of non-drug users.
FG6: she knows she can’t go back to those people because she’ll probably well, I, god forbid, hopefully you know but she could use again.

9. FG2: you need something to fill the time and that is a big killer
Activities
FG2: So there’s something about your ability to look after yourself that’s important, to take care of yourself
FG3: Coz you actually get up on a morning and do something and focus what your guna do and you go do it.
FG2: you need something to fill the time and that is a big killer
FG2: I’m at college doing two courses a week I’m doing cooking course, sewing courses

10. Stage 2
Defining outcome measures in a way that is meaningful to service users, their friends and family.
Stage 1:
Generating a list of items
Stage 2:
Producing questionnaire
Stage 3:
Piloting the questionnaire
Stage 4:
Distributing questionnaire

11. Final definitions to be used for the pilot questionnaire
Stage 2 Method
Initial definitions
Consultation interviews
Service user meaningful definitions
Final definitions to be used for the pilot questionnaire

12. Consultation feedback
Having money
Having money in your pocket
Having enough money to live comfortably
Accommodation
Having proper accommodation
Having suitable accommodation

13. What’s next? Stage 3 Pilot questionnaire Incorporate feedback Stage 4
Distribution of final questionnaire

14. Any questions? sarah.thurgood@nhs.net 0113 29 51338

15. Research contribution:
NIHR
Nine CLAHRCs
Approx £10 million each
CLAHRC
Leeds/York/Bradford
Addiction Research in Acute Settings (ARiAS)
1 of 5 themes
ARiAS
Outcome measurement 1 of 6 strands
“This presentation is part of independent research funded by the National Institute of Health Research (NIHR) through the NIHR Collaboration for Leadership in Applied Health Research and Care for Leeds, York and Bradford. The views expressed are those of the authors and not necessarily those of the NHS, NIHR or the Department of Health. The NIHR had no role in the study design, collection, analysis or interpretation of the data, writing the presentation, or the decision to submit for dissemination.”

16. Qualitative Analysis:
Initial code generation
1st level coding quotes
Searching for themes
2nd level coding general categories
3rd level coding specific categories
Reviewing themes
4th level coding main themes
The transcribed data was coded sentence by sentence across all five focus groups
Twelve, 2nd level coding categories were created. Each of the these categories were further broken down to create a third level of coding
Through inspecting the third level codes it was decided that they could be collapsed into four broader categories: being better, process of change, consequences of use and reasons for use.
Example of coding
Improved relationships
Social
Effect on relationships
Being better
Improvement in relationship with family and friends
Mm, I’ve got down getting on with family and friends, yeah.
Following Thematic Analysis by Braun & Clarke (2006)

17. What is Being better? Relationships With friends and family improved
Social Situation
Self awareness
Abstinence
Activities
Health
Friends and family
Relationships
With friends and family improved
New friendships with non users
Staying away from users
Social Situation
Money
Accommodation
Self Awareness
Confidence
Self esteem
Trust
Optimism
Abstinence
Not taking any medication
Stopping using
Activities
Personal Care
Day to day tasks
Alternative activities
Personal development
Health
Mental Health
Physical Health
Sense of wellbeing
Friends and family
Wellbeing of friends and family
Support for friends and family

18. Process of change: Support Awareness Relapse Professional Social Peer
Coping strategies
Stages of recovery
Awareness of relapse
Reducing amount used
Treatment
Activities
Barriers
Support
Awareness
Relapse
Professional
Social
Peer
Coping
Strategies
Good addiction
Stages of recovery
Making the decision to change
Building confidence
Involvement in own recovery
Awareness of relapse
Signs of relapse
Cycle of relapse
Reducing amount used
Treatment
Follow up
Individual treatment
Addressing issues
Psychiatric treatment
Activities
Non using activity
Group Activity
Filling time
Barriers
Negative influences
Housing
Confidentiality
Non users understanding

19. Effect on Relationships
Consequences of use:
Consequences
Social situation
Addiction
Self awareness
Activities
Treatment by others
Effect on Relationships
Effect on health
Social Situation
Availability of accommodation
Addiction
Cravings
Dependence
Worry about relapse
Self awareness
Low confidence
Feeling ashamed
Making mistakes
Activities
Effect on whole life
Negative behaviour when using
Not part of normal life
Using activity
Lack of personal care
Lack of motivation
Treatment by others
Being judged
Treatment by the police
Social stigma
Media view
Penalties for drug use
Appearance of a drug user
Not being trusted
Relationships
Exposure to other users
Effect on relationships with family and friends
Effect on health
Psychological wellbeing
Physical health
Mental health
Pain masked

20. Mental Health Problems
Reasons for use:
Reasons for use
To escape problems
Suppress feelings
Mental Health Problems
To celebrate
Feeling miserable
To forget about things