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

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

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.  

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

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  

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”.

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

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.

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

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

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

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

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

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

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.”

Qualitative Analysis: Initial code generation 1st level coding 1564 quotes Searching for themes 2nd level coding 12 general categories 3rd level coding 84 specific categories Reviewing themes 4th level coding 4 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)

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

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

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

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