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Knowledge exchange in the mental health arena: The CREST.BD experience Michalak, Erin 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 z z z z z  Routine Social support Identity Spirituality Independence Stigma Qual Life Res. 2006, 15:25-37; Bipolar Disord. 2007, 9:126-43.  First turning point in the journey… journey recognition of the need for a team approach  Team planning funding received in 2007  Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD)  Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD) Canadian team members  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  David Kreindler Mathematical  modelling, clinical  applications of  handheld computers  Roumen Milev Stigma, psychiatric  perspective  Sagar Parikh Knowledge  translation, continuing  professional  development, health  services   International team members  Victoria  Maxwell Consumer  perspective,  knowledge  translation  Jamie Livingston  Stigma  Barb Pesut Spirituality,  religion and  health,  qualitative  research   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.  Ivan Torres  Melinda Suto Leisure, qualitative  Cognitive and  neurobehaviora research  l factors   Lakshmi Yatham Neurobiology  and treatment  of BD  Allan Young  Neurobiology  and treatment  of BD  Steve Hinshaw Stigma,  adolescents with  BD   Sheri Johnson Reward sensitivity, life  events, cognitive  factors, personality  Samson Tse Psychiatric  rehabilitation,  gambling,  Asian health,   Eric Youngstrom Youth with BD,  assessment  factors,  quantitative  methods   Greg Murray Psychosocial  treatments. quality of   life, circadian factors   Core Values  1. A strong consumer focus   4. Emphasis upon refining understanding via  individual difference interactions  2. Emphasis upon wellbeing and growth Examples of CREST.BD research projects  5. A focus upon under‐studied populations   Quality of life in BD: Predictors, structures and outcomes 3. Emphasis on methodology and measurement  6. A think global, act local stance issues 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.   David Miklowitz Family  environmental  factors, family  psychoeducation  Contact: Erin Michalak 2255 Wesbrook Mall, Vancouver, BC, V6T 2A1  Canada 1‐604‐827‐3393 emichala@interchange.ubc.ca  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. 2. 3. 4. 5.  Self-management strategies Accepting BD, not being defined by it Social support Focus on personal growth 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 CIHRfunded 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! erinmichalak@gmail.com  

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