1Sarah Thurgood BSc (Hons) MSc MBPsS Researcher Leeds Addiction Unit Perspectives in Outcome Measurement for Addiction InterventionsLeeds Addiction UnitThe NIHR CLAHRC for Leeds, York and BradfordDevelopment of a questionnaire to survey stakeholders views on outcome measuresSSA Conference8th and 9th November 2012Sarah Thurgood BSc (Hons) MSc MBPsSResearcherLeeds Addiction Unit
2Why do we need this research? Result Outcome package designed by professionalsAre measures meaningful and accessible to those who use them?Consultation with LTLA and Leeds Researchers
3ConsultationLearning to Live Again (LTLA): A service user led aftercare programmeUsing a questionnaire designParticipants have knowledge of addictionLeeds Researchers: A group of service users and carers who are interested in research2 stage process to develop questionnaire1. Exploring what are important outcome measures2. Prioritising the outcomes for inclusion in questionnaire.
4Stage 1Identifying outcome measures considered important to service users, their friends and family in recovery from addiction.Stage 1:Generating a list of itemsStage 2:Producing questionnaireStage 3:Piloting the questionnaireStage 4:Distributing questionnaire
5Method Focus Group Agency Type Type of Activity Service Users Family and FriendsFG1NHSTreatment74FG2NHS/3rd sectorDrug Rehabilitation Requirement (DDR)32FG3Harm reductionFG4SMART groupRecovery mutual aidn/aFG53rd sectorRecovery Service Users onlyFG6Recovery Family & Friends only6TOTAL2412
6Findings“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 BetterPositive life Improvements when recoveredReasons for useReasons for drink or drug useConsequences of useNegative impact on life when addictedProcess of changeAspects 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”.
7What is being better? Being better Relationships Social Situation Self awarenessAbstinenceActivitiesHealthFriends and family
8RelationshipsFG5: I see my wife three times a week sometimes ya know compared with nine months ago I didn’t see her at allFG2: 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.
9FG2: you need something to fill the time and that is a big killer ActivitiesFG2: So there’s something about your ability to look after yourself that’s important, to take care of yourselfFG3: 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 killerFG2: I’m at college doing two courses a week I’m doing cooking course, sewing courses
10Stage 2Defining outcome measures in a way that is meaningful to service users, their friends and family.Stage 1:Generating a list of itemsStage 2:Producing questionnaireStage 3:Piloting the questionnaireStage 4:Distributing questionnaire
11Final definitions to be used for the pilot questionnaire Stage 2 MethodInitial definitionsConsultation interviewsService user meaningful definitionsFinal definitions to be used for the pilot questionnaire
12Consultation feedback Having moneyHaving money in your pocketHaving enough money to live comfortablyAccommodationHaving proper accommodationHaving suitable accommodation
13What’s next? Stage 3 Pilot questionnaire Incorporate feedback Stage 4 Distribution of final questionnaire
15Research contribution: NIHRNine CLAHRCsApprox £10 million eachCLAHRCLeeds/York/BradfordAddiction Research in Acute Settings (ARiAS)1 of 5 themesARiASOutcome 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.”
16Qualitative Analysis: Initial code generation1st level coding quotesSearching for themes2nd level coding general categories3rd level coding specific categoriesReviewing themes4th level coding main themesThe transcribed data was coded sentence by sentence across all five focus groupsTwelve, 2nd level coding categories were created. Each of the these categories were further broken down to create a third level of codingThrough 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 codingImproved relationshipsSocialEffect on relationshipsBeing betterImprovement in relationship with family and friendsMm, I’ve got down getting on with family and friends, yeah.Following Thematic Analysis by Braun & Clarke (2006)
17What is Being better? Relationships With friends and family improved Social SituationSelf awarenessAbstinenceActivitiesHealthFriends and familyRelationshipsWith friends and family improvedNew friendships with non usersStaying away from usersSocial SituationMoneyAccommodationSelf AwarenessConfidenceSelf esteemTrustOptimismAbstinenceNot taking any medicationStopping usingActivitiesPersonal CareDay to day tasksAlternative activitiesPersonal developmentHealthMental HealthPhysical HealthSense of wellbeingFriends and familyWellbeing of friends and familySupport for friends and family
18Process of change: Support Awareness Relapse Professional Social Peer Coping strategiesStages of recoveryAwareness of relapseReducing amount usedTreatmentActivitiesBarriersSupportAwarenessRelapseProfessionalSocialPeerCopingStrategiesGood addictionStages of recoveryMaking the decision to changeBuilding confidenceInvolvement in own recoveryAwareness of relapseSigns of relapseCycle of relapseReducing amount usedTreatmentFollow upIndividual treatmentAddressing issuesPsychiatric treatmentActivitiesNon using activityGroup ActivityFilling timeBarriersNegative influencesHousingConfidentialityNon users understanding
19Effect on Relationships Consequences of use:ConsequencesSocial situationAddictionSelf awarenessActivitiesTreatment by othersEffect on RelationshipsEffect on healthSocial SituationAvailability of accommodationAddictionCravingsDependenceWorry about relapseSelf awarenessLow confidenceFeeling ashamedMaking mistakesActivitiesEffect on whole lifeNegative behaviour when usingNot part of normal lifeUsing activityLack of personal careLack of motivationTreatment by othersBeing judgedTreatment by the policeSocial stigmaMedia viewPenalties for drug useAppearance of a drug userNot being trustedRelationshipsExposure to other usersEffect on relationships with family and friendsEffect on healthPsychological wellbeingPhysical healthMental healthPain masked
20Mental Health Problems Reasons for use:Reasons for useTo escape problemsSuppress feelingsMental Health ProblemsTo celebrateFeeling miserableTo forget about things