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

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Knowledge Exchange in the Mental Health Arena: The CREST.BD experience NEXUS Spring Institute April 17th  2009 Dr. Erin Michalak Department of Psychiatry University of British Columbia  Bipolar disorder z Uniquely complex condition z Remarkably little previous qualitative, mixed method or participatory research z Most previous research conducted within the framework of a traditional medical model z Little focus upon recovery or quality of life Quality of life z No accepted definition of what constitutes QoL z Multi-dimensional z Dynamic z Highly subjective Quality of life in the Michalak household How 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 Routine z Social support z Identity z Spirituality z Independence z Stigma Qual Life Res. 2006, 15:25-37;  Bipolar Disord. 2007, 9:126-43. First 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 2007 Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD) British Columbia based team members  Erin Michalak Team Leader Quality of life,   psychosocial   functioning Jehannine Austin Genetics, genetic   counseling,   knowledge   translation Sandra Hale Recovery,   knowledge   translation Catriona   Hippman Genetics,   genetic   counselling Rachelle Hole Qualitative   research  Raymond Lam Clinical and   neurobiological   factors Mark Lau Cognitive    behaviour  therapy Victoria   Maxwell Consumer   perspective,   knowledge   translation David Miklowitz Family   environmental   factors, family   psychoeducation Jamie Livingston  Stigma Barb Pesut Spirituality,   religion and   health,   qualitative   research  Melinda Suto Leisure, qualitative   research  Ivan Torres   Cognitive and   neurobehaviora  l factors  Allan Young   Neurobiology   and treatment   of BD Lakshmi  Yatham  Neurobiology   and treatment   of BD Canadian team members David Kreindler Mathematical   modelling, clinical   applications of   handheld computers Roumen  Milev Stigma, psychiatric   perspective Sagar  Parikh Knowledge   translation, continuing   professional   development, health   services  Steve Hinshaw Stigma,   adolescents with   BD  International team members Sheri Johnson Reward sensitivity, life   events, cognitive   factors, personality Greg Murray Psychosocial   treatments. quality of    life, circadian factors  Samson Tse Psychiatric   rehabilitation,   gambling,  Asian health,  Eric Youngstrom Youth with BD,  assessment   factors,   quantitative   methods  Who we are CREST.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   important Bipolar 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 Values 1. A strong consumer focus  4. Emphasis upon refining understanding via   individual difference interactions 2. Emphasis upon wellbeing and growth 5. A focus upon under‐studied populations  3. Emphasis on methodology and measurement   issues 6. A think global, act local stance Examples of CREST.BD research projects Contact: Erin Michalak 2255 Wesbrook  Mall, Vancouver, BC, V6T 2A1   Canada 1‐604‐827‐3393 Quality of life in BD: Predictors, structures and outcomes Although 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 change This 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 spread 2007 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 group Data analysis:  Via NVivo, multidisciplinary team of 4 individuals Methodological approach: Combination of narrative, content and quantitative analysis Results Data analysis revealed 5 themes: 1.  Self-management strategies 2.  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 stigma 2009 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 ¾ Large CIHR operating grant ¾ 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 manifest 2) Establish a community consultation panel; variety of other forms of KE Lessons 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!


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