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Knowledge exchange in the mental health arena: The CREST.BD experience Michalak, Erin 2009-04-30

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Knowledge Exchange in the Mental Health Arena: The CREST.BD experienceNEXUS Spring Institute April 17th 2009Dr. Erin MichalakDepartment of Psychiatry University of British ColumbiaUniversity of British ColumbiaBipolar disorder z Uniquely complex condition z Remarkably little previous qualitative, mixed method or participatory researchz Most previous research conducted within the framework of a traditional medical model z Little focus upon recovery or quality of lifeQuality of lifez No accepted definition of what constitutes QoLz Multi-dimensionalz Dynamic z Highly subjective Quality of life in the Michalak householdHow is QoL understood by people with BD?Qualitative interviews with individuals with BD (n=35), their caregivers (n=5) or experts in BD (n=12) about determinants of QoL in BD z Routinez Social supportz Identityz Spiritualityz Independencez StigmaQual Life Res. 2006, 15:25-37;  Bipolar Disord. 2007, 9:126-43.First turning point in the journeyFirst turning point in the journey… recognition of the need for a team approach Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD)Team planning funding received in 2007Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD)British Columbia based team members Erin MichalakTeam LeaderQuality of life,  psychosocial  functioningJehannine AustinGenetics, genetic  counseling,  knowledge  translationSandra HaleRecovery,  knowledge  translationCatriona  HippmanGenetics,  genetic  counsellingRachelle HoleQualitative  research Raymond LamClinical and  neurobiological  factorsMark LauCognitive   behaviour therapyVictoria  MaxwellConsumer  perspective,  knowledge  translationDavid MiklowitzFamily  environmental  factors, family  psychoeducationJamie Livingston StigmaBarb PesutSpirituality,  religion and  health,  qualitative  research Melinda SutoLeisure, qualitative  research Ivan Torres  Cognitive and  neurobehaviora l factors Allan Young  Neurobiology  and treatment  of BDLakshmi Yatham Neurobiology  and treatment  of BDCanadian team membersDavid KreindlerMathematical  modelling, clinical  applications of  handheld computersRoumen MilevStigma, psychiatric  perspectiveSagar ParikhKnowledge  translation, continuing  professional  development, health  services Steve HinshawStigma,  adolescents with  BD International team membersSheri JohnsonReward sensitivity, life  events, cognitive  factors, personalityGreg MurrayPsychosocial  treatments. quality of   life, circadian factors Samson TsePsychiatric  rehabilitation,  gambling, Asian health, Eric YoungstromYouth with BD, assessment  factors,  quantitative  methods Who we areCREST.BD is a network of individuals who have come  together to focus upon the study of psychosocial  issues in bipolar disorder (BD).Why we believe the study of psychosocial issues is  importantBipolar disorder is a disabling psychiatric condition  that affects half a million Canadians. Advances in  medication management of BD have been  encouraging. However, it has become increasing  apparent that psychosocial factors have a crucial role  to play in how the condition manifests.  This is a rapidly emerging field, but research to date  has been fragmented.  We believe that the time is  right to bring together a cohesive, multidisciplinary  group of individuals to focus research efforts in this  area.  Our aim is to create a network of people who  are more than the sum of their parts; a team that can  significantly further our understanding of psychosocial  issues in BD.Core Values1. A strong consumer focus  4. Emphasis upon refining understanding via  individual difference interactions2. Emphasis upon wellbeing and growth 5. A focus upon under‐studied populations 3. Emphasis on methodology and measurement  issues6. A think global, act local stanceExamples of CREST.BD research projectsContact:Erin Michalak2255 Wesbrook Mall,Vancouver, BC, V6T 2A1  Canada1‐604‐827‐3393emichala@interchange.ubc.caQuality of life in BD: Predictors, structures and outcomesAlthough QoL is an important outcome to assess, research into QoL in BD has been slow on the uptake, and there are still many  important questions to be answered. For example, we do not yet fully understand what factors contribute to good or poor QoL in  people with BD.  In particular, BD has been studied in the past in terms of a traditional ‘medical model’.  As a result, little focus has been  placed upon factors such an individual’s personality or how much social support they have, or their experiences of stigma.  This  multicentre study has been designed to model QoL in BD.Quality of life, stigma, and BD: A collaboration for changeThis study will educate consumers and healthcare providers simultaneously about a) The importance of stigma, both internal and  external in BD (how to recognize internalised and externalised stigma and how to deal with it) and b) The importance of using QoL as an  outcome measure in BD.   Strategies we will use to educate include: presentations, teaching events, manuals, courses, developing online interventions, providing supervision for new scales and interventions. CREST.BD: geographic spread2007 team planning weekend…Plenty of heated debate…Victoria Maxwell gives her two cents worth CREST.BD core values• Strong consumer focus • Emphasis upon wellbeing and growth• Emphasis on methodology and measurement issues• Emphasis upon refining understanding via individual differences (e.g. age, gender, ethnicity, personality)• A focus upon under-studied populations (e.g., rural/remote, indigenous/migrant populations, elderly/youth with BD)• Think global, act local stance: strong connections to international groups, but the understandings will be brought to bear on the specific context of BC An example of a CREST.BD study ‘Wellness in BD’Aim: To determine the self-management strategies used by high functioning individuals with BD Method: Participant choice of semi-structured individual interview or focus groupData analysis: Via NVivo, multidisciplinary team of 4 individualsMethodological approach: Combination of narrative, content and quantitative analysisResultsData analysis revealed 5 themes: 1. Self-management strategies2. Accepting BD, not being defined by it 3. Social support 4. Focus on personal growth 5. Stigma Knowledge Exchange activities…Other forms of KE….• Website• Regular newsletters• CREST.BD ‘Consumer Group’• Peer researcher network • Opening up data to consumer group 2008 CIHR- funded community consultation day Attended by 48 people: 30 consumers with BD (or their family members) and 18 team members.A second turning point in the journey…… focus upon stigma2009 CIHR-funded Community Consultation Day and CPD event Converging paths● Findings from our mixed methods and CBR research indicate that stigma is paramount in determining QoL in BD ● Platform for our future program of consumer-centric, ‘integrative KT’ research� Large CIHR operating grant � CIHR ‘Knowledge to Action’ grant CIHR KTA application: “QoL, stigma and BD: A collaboration for change”● Aims: Educate consumers re. how to recognise internalised stigma, deal with it, recognise and respond to public stigma● Aims: Educate provider re. stigma, both internalised and public, how to facilitate treatment plans for reducing internalised stigma● Methods. 1) Develop, disseminate and evaluate a presentation by Decision Maker to dramatically illustrate how internalised and public stigma manifest2) Establish a community consultation panel; variety of other forms of KELessons learnt along the journey   ● A different kind of research process● Takes time (higher risk for early career researchers), commitment, passion, defending ● Issues around data/resource ownership can be significant ● Funding bodies have some way to go ● High relevance as research questions reflect the needs of the community● Creative and pragmatic implementation of results can occur● Research community is invested in the process – can pay dividends Feel free to contact me! erinmichalak@gmail.com


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