Harnessing the potential of community-based participatory research approaches in bipolar disorder

Erin E Michalak; Steven Jones; Fiona Lobban; Guillermo Perez Algorta; Steven J Barnes; Lesley Berk; Michael Berk; Rachelle Hole; Sara Lapsley; Victoria Maxwell; Roumen Milev; John McManamy; Greg Murray; Mauricio Tohen; Samson Tse; Manuel Sanchez de Carmona; Sheri L Johnson; ISBD Taskforce on Community Engagement; CREST.BD

doi:10.1186/s40345-016-0045-5

Harnessing the potential of community-based participatory research approaches in bipolar disorder

Int J Bipolar Disord. 2016 Dec;4(1):4. doi: 10.1186/s40345-016-0045-5. Epub 2016 Feb 9.

Authors

Erin E Michalak¹, Steven Jones², Fiona Lobban³, Guillermo Perez Algorta⁴, Steven J Barnes⁵, Lesley Berk^{6

7}, Michael Berk^{8

9}, Rachelle Hole¹⁰, Sara Lapsley¹¹, Victoria Maxwell¹², Roumen Milev¹³, John McManamy¹⁴, Greg Murray¹⁵, Mauricio Tohen¹⁶, Samson Tse¹⁷, Manuel Sanchez de Carmona¹⁸, Sheri L Johnson¹⁹; ISBD Taskforce on Community Engagement; CREST.BD

Affiliations

¹ Mood Disorders Centre, Department of Psychiatry, University of British Columbia, 2255 Wesbrook Mall, Vancouver, BC, V6T 2A1, Canada. [email protected].
² Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK. [email protected].
³ Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK. [email protected].
⁴ Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK. [email protected].
⁵ Department of Psychology, University of British Columbia, Vancouver, Canada. [email protected].
⁶ IMPACT Strategic Research Centre, Faculty of Health, Deakin University, Geelong, Australia. [email protected].
⁷ Department of Psychiatry, University of Melbourne, Melbourne, VIC, Australia. [email protected].
⁸ IMPACT Strategic Research Centre, Deakin University, Melbourne, Australia. [email protected].
⁹ Department of Psychiatry, Orygen Research Centre, and the Florey Institute for Neuroscience and Mental Health, University of Melbourne, Melbourne, VIC, Australia. [email protected].
¹⁰ Centre for Inclusion and Citizenship, School of Social Work, The University of British Columbia, Vancouver, Canada. [email protected].
¹¹ Department of Education, University of British Columbia, Vancouver, Canada. [email protected].
¹² Crazy for Life Co., Sechelt, BC, Canada. [email protected].
¹³ Departments of Psychiatry and Psychology, Queen's University, Kingston, ON, Canada. [email protected].
¹⁴ The Bipolar Expert Series, Alpine, CA, USA. [email protected].
¹⁵ Faculty of Life and Social Sciences, Swinburne University of Technology, Hawthorn, Australia. [email protected].
¹⁶ Department of Psychiatry, Health Sciences Center, University of New Mexico, Albuquerque, NM, USA. [email protected].
¹⁷ Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong, China. [email protected].
¹⁸ Bipolar Connection Clinic, Mexico City, Mexico. [email protected].
¹⁹ Department of Psychology, University of California, Berkeley, CA, USA. [email protected].

Abstract

Background: Despite the rapid growth in the sophistication of research on bipolar disorder (BD), the field faces challenges in improving quality of life (QoL) and symptom outcomes, adapting treatments for marginalized communities, and disseminating research insights into real-world practice. Community-based participatory research (CBPR)-research that is conducted as a partnership between researchers and community members-has helped address similar gaps in other health conditions. This paper aims to improve awareness of the potential benefits of CBPR in BD research.

Methods: This paper is a product of the International Society for Bipolar Disorders (ISBD) Taskforce on Community Engagement which includes academic researchers, healthcare providers, people with lived experience of BD, and stakeholders from BD community agencies. Illustrative examples of CBPR in action are provided from two established centres that specialize in community engagement in BD research: the Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) in Canada, and the Spectrum Centre for Mental Health Research in the United Kingdom.

Results and discussion: We describe the philosophy of CBPR and then introduce four core research areas the BD community has prioritized for research: new treatment approaches, more comprehensive outcome assessments, tackling stigma, and enhanced understanding of positive outcomes. We then describe ways in which CBPR is ideal for advancing each of these research areas and provide specific examples of ways that CBPR has already been successfully applied in these areas. We end by noting potential challenges and mitigation strategies in the application of CBPR in BD research.

Conclusions: We believe that CBPR approaches have significant potential value for the BD research community. The observations and concerns of people with BD, their family members, and supports clearly represent a rich source of information. CBPR approaches provide a collaborative, equitable, empowering orientation to research that builds on the diversity of strengths amongst community stakeholders. Despite the potential merits of this approach, CBPR is as yet not widely used in the BD research field, representing a missed opportunity.

Keywords: Bipolar disorder; Community-based participatory research; Knowledge translation; Research methods.