If you ask Heather Stuart how her career as an expert in the stigma surrounding mental illness began, her tone is light. She tells of growing up in Guelph, Ontario next to a mental hospital, the Homewood Sanitarium, where her mother worked as an administrator.
“I would meet the patients every day when I went to see my mother,” recalled Dr. Stuart. “They were pleasant and kind people and I made friends with them. It never occurred to me that there was a huge social division between us.”
Today, that innocence is replaced by a determination to understand and properly address the negative stigma associated with mental illness, a problem costing the Canadian economy an estimated $51 billion annually. This past February, the professor of community health and epidemiology at Queen’s University was appointed to the new Bell Mental Health and Anti-Stigma Research Chair, with a $1-million endowment from Bell Canada over five years.
Social stigma is defined loosely as a cognitive-emotional process that leads to negative stereotyping, prejudicial feelings and discriminatory behavior towards those with a particular condition. Applied to mental illness, stigma has the ability to nullify all the good work done in the mental health field, said Dr. Stuart.
“You can put in place counselors, programs and other services to help people with mental illnesses, but these are wasted if people are scared to come forward for fear of being labeled negatively or ostracized.”
Dr. Stuart steered the research approach of the Mental Health Commission of Canada’s Opening Minds program – a 10-year anti-stigma, anti-discrimination initiative designed to change the attitudes and behaviours of Canadians towards people living with mental illness.
According to Michael Pietrus, director of Opening Minds, Dr. Stuart convinced his team to go beyond an anti-stigma campaign and to include new, targeted research. Currently there aren’t many best practices on how to reduce stigma in mental health.
At her suggestion, the research team issued a Request for Interest to groups across Canada and received 250 responses, detailing mental illness projects under way. This led Opening Minds to narrow its focus to four key areas where stigma is high:
youth – evidently 70 percent of adults living with stigma say the onset occurred before age 18;
health care providers – surprisingly, many show disrespect and discrimination towards mental health issues;
the workplace – a huge number of employees chose to go untreated rather than risk being labeled as unproductive or untrustworthy; and
media – all forms of media tend to perpetuate a stereotype of the violent or dangerous mentally ill person.
Mr. Pietrus said that the evidence that will come from research on these projects “will enable the team, with Dr. Stuart’s help, to measure stigma and potential stigma reduction.”
Mr. Pietrus credited Dr. Stuart’s training in epidemiology with allowing her to quantify the problem, making it “attractive to policy makers, who want to see scope and numbers.”
Her work for Opening Minds taps into a project of her own: developing inventories of stigma experiences, which she calls Stigma Impact Scales. To carry this out, she relies on data gathered in complex field tests aimed at measuring the frequency and intensity of experiences of people with mental illnesses. For example, she devised a stigma assessment module and used it to piggyback onto one of Statistics Canada’s health surveys.
“Understanding the frequency and scope of stigma experienced by people who live with a mental disorder will be essential for targeting anti-stigma programs to where they are needed most,” she explained.
Dr. Stuart’s appointment coincides with momentum on mental health both at Queen’s and in the broader university community. Last September, Queen’s formed a Principal’s Commission on Mental Health that is scheduled to report this May. And last February, at a workshop on mental health for senior university administrators led by the Association of Universities and Colleges of Canada, a working group of university presidents was formed to try to devise a road map to help universities respond effectively.
David Walker, a professor in Queen’s school of health sciences who chairs the principal’s commission, said stigma “may turn out to be one of the most difficult elements of moving forward on mental health issues” because it implies changing ingrained attitudes and behaviour. He cited selection committees for law or medical school as examples of stigma in academe.
“The committee has the best intentions of the world,” he said, “but when comparing transcripts of the person who has been on the football team, the debating team, and has a GPA of 3.7… with the student who has good marks but keeps having incomplete courses because they became unwell and had had to have therapy – that is how people react.”
Along the same vein, Dr. Stuart said that people avoid using available services, such as student counseling, because of the stigma associated with mental health issues.
“Universities are going to come up against a wall unless they encourage students to become more comfortable about disclosing to their health-care providers that they have a problem.” Universities need to let students know that using the services won’t hurt their academic career, she added.
And while it may be helpful for students to see “leaders” admit to having mental health issues, both Drs. Stuart and Walker said that most people with mental disorders do not identify with “successful” people, and they suggested that openness among peers is a better approach.
One campus-based project of Dr. Stuart’s is a series of pilot projects to test a “contact-based approach” to reducing stigma. The idea is to try to create a positive situation when people come in contact, through work or study, with those with a mental illness. “Universities and other workplaces are ideal situations,” she said, “where these emotional barriers can be broken down.”
Social barriers often make it impossible for these people “who are often very intelligent, to finish their education, get a good job, and be independent, happy people.
“Not a week goes by that I don’t hear a person with a mental illness tell me she or he wished they had had cancer because it is more acceptable. That breaks my heart.”