development of a questionnaire to survey stakeholders views on outcome measures sarah thurgood bsc...
TRANSCRIPT
Development of a questionnaire to survey stakeholders views on outcome measures
Sarah Thurgood BSc (Hons) MSc MBPsSResearcherLeeds Addiction Unit
Perspectives in Outcome Measurement for Addiction Interventions
SSA Conference8th and 9th November 2012
Leeds Addiction UnitThe NIHR CLAHRC for Leeds, York
and Bradford
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
ConsultationLearning 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 1Identifying 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 questionnai
re
Stage 4:Distributing questionnai
re
MethodFocus 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 NHS/3rd sector Harm reduction 0 0
FG4 SMART group Recovery mutual aid 7 n/a
FG5 3rd sector Recovery Service Users only 7 n/a
FG6 3rd sector Recovery Family & Friends only n/a 6
TOTAL 24 12
Findings
Being Better
Positive life Improvement
s when recovered
Reasons for use
Reasons for drink or drug
use
Consequences of useNegative
impact on life when
addicted
Process of changeAspects
involved in the process of recovery
“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”
“Like everybody thinks you’re a thief, everybody thinks you’re dirty, everybody thinks that you’re stupid, whatever, they just…”
“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”.
“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
AbstinenceActivities
Health
Friends and family
RelationshipsFG5: 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.
ActivitiesFG2: 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 2Defining 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 questionnai
re
Stage 4:Distributing questionnai
re
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
•Nine CLAHRCs
•Approx £10 million each
NIHR•Leeds/
York/Bradford
•Addiction Research in Acute Settings (ARiAS)
•1 of 5 themes
CLAHRC
•Outcome measurement 1 of 6 strands
ARiAS
Research contribution:
“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.
Following Thematic Analysis by Braun & Clarke (2006)
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.
Example of coding
What is Being better?Relationshipso With friends and family improvedo New friendships with non userso Staying away from usersSocial Situationo Moneyo AccommodationSelf Awarenesso Confidenceo Self esteemo Trusto Optimism Abstinenceo Not taking any medicationo Stopping usingActivitieso Personal Careo Day to day taskso Alternative activitieso Personal development Healtho Mental Healtho Physical Healtho Sense of wellbeingFriends and familyo Wellbeing of friends and familyo Support for friends and family
Being better
Relationships
Social Situation
Self awareness
AbstinenceActivities
Health
Friends and family
Process of change:Supporto Awarenesso Relapseo Professional o Socialo PeerCopingo Strategieso Good addictionStages of recoveryo Making the decision to changeo Building confidenceo Involvement in own recoveryAwareness of relapseo Signs of relapseo Cycle of relapseReducing amount usedTreatmento Follow upo Individual treatmento Addressing issueso Psychiatric treatmentActivitieso Non using activityo Group Activityo Filling timeBarrierso Negative influenceso Housingo Confidentialityo Non users understanding
Process of
change
Support
Coping strategies
Stages of recovery
Awareness of relapse
Reducing amount
used
Treatment
Activities
Barriers
Consequences of use:Social Situationo Availability of accommodationAddictiono Cravingso Dependenceo Worry about relapseSelf awarenesso Low confidenceo Feeling ashamedo Making mistakesActivitieso Effect on whole lifeo Negative behaviour when usingo Not part of normal lifeo Using activityo Lack of personal careo Lack of motivationTreatment by otherso Being judgedo Treatment by the policeo Social stigmao Media viewo Penalties for drug useo Appearance of a drug usero Not being trustedRelationshipso Exposure to other userso Effect on relationships with family and friendsEffect on healtho Psychological wellbeingo Physical healtho Mental healtho Pain masked
Consequences
Social situation
Addiction
Self awareness
Activities
Treatment by others
Effect on Relationsh
ips
Effect on health
Reasons for use:
Reasons for use
To escape proble
ms
Suppress
feelings
Mental Health Proble
ms
To celebrate
Feeling misera
ble
To forget about things