A patient interview revealing many difficult years of trial-and-error in self-managing bipolar disorder piqued Dr. Erin Michalak’s interest in the notion of lived experience as knowledge. Dr. Michalak is one of the lead investigators for a current study at the Vancouver Coastal Health Research Institute (VCHRI) that explores personal experiences coping with bipolar disorder. The study aims to use lived experiences to develop a catalogue of effective self-management strategies.
“It was eye-opening for me — the people with bipolar disorder whom I work with had spent so many years figuring this out and I felt that this knowledge needed to be shared,” says Dr. Michalak, director for Mental Health Research for VCHRI’s Community Based Translational Research Program and associate professor at UBC Department of Psychiatry. “And the more interviews I did the more I realized there was a wealth of valuable lived experience, expertise, and knowledge that we weren’t tapping into.”
Little research exists around bipolar disorders’ patient-focused quality of life, psychosocial rehabilitation, and coping strategies. To fill the gap, Dr. Michalak’s study is using Delphi Consensus Consultation Methods to achieve its objectives.
“Delphi methods are unprejudiced and give lived expertise the same weight as clinical and academic expertise,” she explains. “Through this process the cream of the crop in terms of evidence and knowledge comes through regardless of the source.”
Exploring grey literature
Dr. Michalak’s approach has included drawing from ‘grey literature’, e.g. blogs, chat forums, websites, etc., to find individuals’ personal accounts of bipolar disorder self-management. Also, this is the first study to blend Delphi methods with community-based participatory research as individuals with bipolar disorder are working alongside researchers as co-investigators.
“If you can imagine the volume of work having to go through grey literature – it’s a huge task and our team is very passionate about the subject matter,” she says. “This is knowledge that wouldn’t normally get into the scientific literature.”
Dr. Michalak hopes her study findings will reduce the years of immense difficulties many patients endure when trying to cope with the disorder. “We want to help people maintain their health and quality of life,” she adds. “Our hope is to share these self-management strategies with people who have just been diagnosed - often in their late teens - so we have the potential to stop the progression of the condition.”
Recruitment for the study’s online survey is currently underway. People with bipolar disorder who self-describe as ‘living well’ are encouraged to participate, as well as health-care providers working with people with bipolar disorder (e.g. clinicians, general physicians, psychiatrists, occupational therapists, etc.)