Unique network uses community-based participatory research to study bipolar disorder

18 May 2016

As a research program, CREST.BD is one of a kind.

The multidisciplinary network founded by MSFHR Scholar Erin Michalak is the only program in the world to apply a community-based participatory research (CBPR) approach to the study of bipolar disorder.

CBPR is a partnership between researchers and individuals with lived experience of a particular health condition or other stakeholders. It aims to shape the research process around the perspectives and goals of community members to generate knowledge that can contribute to positive social change. Applied to bipolar disorder, it has enabled Michalak and her CREST.BD colleagues to gain unique insight into a range of issues, including new treatment approaches and methods for tackling stigma.

“Bipolar disorder is one of the most complex mental health conditions we deal with,” says Michalak. “It’s a mood disorder than can play out in myriad, diverse ways, and people with bipolar disorder are often highly stigmatized and marginalized. However, CBPR methods offer an ideal approach to working with communities who are traditionally disempowered or disenfranchised”.

With around 40 core members, many of whom have first-hand experience of bipolar disorder, CREST.BD focuses on four main priorities: quality of life, self-management, psychosocial interventions, and stigma. These research and knowledge exchange priorities were selected on the basis of community consultation and reflect the network’s commitment to an inclusive approach to research.

“The very first thing we did with our MSFHR Team Planning Award was to sit down and hold a community engagement day with 50 or 60 people and say, ‘OK, where are the gaps? What needs to be addressed in bipolar disorder research? What can we do differently?’” Michalak recalls.

“Our foci and our role as a network are based on that, and we’re continuing to refine our research foci on the basis of constant iterative engagement with the wider community.”

Research highlights in each priority area, along with free web-based tools and resources for people living with bipolar disorder and their healthcare providers, are available on CREST.BD’s newly launched website.

One of the tools the network has developed is the first quality of life questionnaire specifically designed for people with bipolar disorder. The full version of the scale, which can be completed online, contains 56 questions across 14 domains that relate to how individuals perceive their lives.

CREST.BD has also developed an online Bipolar Wellness Centre to support self-management in people with bipolar disorder. This website features a variety of resources, including videos, webinars, and an “evidence library” of bipolar disorder research.

More recently, Michalak and her team have worked closely with members of the community to better understand positive attributes of bipolar disorder, such as enhanced creativity, and help bring them to the forefront through research. The network has hosted a community engagement day for individuals in creative professions living with bipolar disorder and also supported the development of a 55-minute theatrical performance about bipolar disorder stigma as part of a CIHR Knowledge to Action study. As a whole, Michalak and her network hope that their collective work helps improve both science, and society, for people with bipolar disorder.

To learn more about CREST.BD’s research, visit www.crestbd.ca.