A Measure of Progress

When Kristen Parks delved into the Mental Health Structural Stigma in Health Care eLearning Course this past summer, she soon had a distinct feeling of déjà vu.

It didn’t take long for her to realize, though, that some of the material was familiar because she’d seen it before. More than ten years ago, when she was in nursing school, she took an entire course on mental health.

“It was like flexing muscles that I hadn’t used in a long time,” says Parks, a registered nurse in the cardiac care unit at a hospital in the Atlantic provinces. “When you work in a hospital setting, you have a specialization. That’s what you have the most expertise in and it’s also usually what you focus on the most.”

The course – released a year ago by Canadian online healthcare learning provider HealthCareCAN, in partnership with the Mental Health Commission of Canada – is free, takes about 1-2 hours, and is available to anyone. The goal is to raise awareness about structural stigma, which can have a particularly negative impact on people experiencing mental health and substance use issues.

A type of stigma

In health care, structural stigma occurs when laws, policies, and practices result in the unfair treatment of people with lived and living experience. Such unfairness leads to inequitable access and a lower quality of care for these individuals, whether their concerns relate to physical health, mental health, and/or substance use.

This past decade has seen researchers—many of them Canadians—build a robust body of literature that investigates the impact of stigma in health care, more recently with a focus on structural stigma. Educational initiatives, like the course that Parks enrolled in, are based on that research, as well as insights from people with lived and living experience of mental health and substance with the aim of increasing understanding and awareness.

“With the material I already knew, it was more about bringing it to the forefront of my mind,” Parks explains, “but some of it was new. I took that course about 12 years ago and, since then, the insights and recommendations have changed, which is good. We want things to change.”

What changed?

More than 40 percent of respondents who took the course over the past year said they could describe the problem, as well as its impact on clients, identify where it existed in their organization, and “describe factors that contributed to the enablement of structural stigma in health care.”

Although there’s more than one problem created by structural stigma in health care, the central issue is that it creates a barrier for many marginalized populations. Not only has it been shown to discourage people from seeking out preventative care or early treatment, once people finally do seek treatment, stigma can lead to both poor treatment plans and missed diagnoses, the latter of which is often the result of “diagnostic overshadowing.”

For example, someone with a substance use disorder could be be seeking help for anything from a broken arm to kidney stones but, once medical staff learn of the patient’s previous diagnosis of substance use issues, that diagnosis can overshadow other medical issues. That shadow can cloud the judgment of caregivers who suddenly only a “drug-seeker,” even though the patient might clearly be in pain and in need of medication.

“It’s super harmful,” says Gretchen Grappone, a licensed independent clinical social worker, whose work is now focused on training health-care professionals about structural stigma. “Because of diagnostic overshadowing, many people with mental illness or substance use disorders don’t get the treatment they need.”

Grappone recalls one example where someone went to the emergency room with serious chest pain but, because they’d been to that emergency department before and had been treated for borderline personality disorder, they weren’t taken seriously, Grappone says. “Then they died because they didn’t get the care they needed.”

Serious consequences

Incidents like this were part of Grappone’s motivation to shift her practice away from counselling individuals and towards providing education and training about stigma in health care settings. Another reason is that she has lived experience of depression.

“I didn’t get diagnosed until I’d experienced various forms of discrimination over many, many years,” she says. “That discrimination was related not only to seeking treatment for depression, but also because I’m openly gay, so it’s intersectional stigma.”

That personal experience, combined with her work as a clinician, Grappone says, gave her a front-row seat to many specific types of discrimination within the health-care system. That’s made her a valuable resource in the growing movement to dismantle structural stigma in health care, since research has shown that marginalized people who have experienced stigma have essential insights into that process.

Often, people with lived and living experience are the only ones who can see the problems that are baked in to practices that many take for granted as standard protocols. A good example is the code blue/code white dichotomy, that sees doctors paged to intervene in physical health crises (code blue), while the first responders to a code white, (violence or aggression) are often security personnel.

For example, in a follow-up survey, a course participant said they had experienced many code whites in their hospital (where a situation could be met with non-violent crisis intervention or physical restraint) but had not considered the patient perspective before taking the course.

De-coding the message

A patient in a mental health crisis, who may already be stressed and confused, may become agitated because of their experiences before the code white is called, they noted. “I can see why security being the first to arrive on the scene of a code white may not actually be the best option for the patient, as it may confuse or agitate them more, putting them on the defensive and escalating the situation further.”

Protocols like these are referred to as “coercive policies and practices,” and they represent an erosion of rights for patients experiencing mental health and substance use issues, who may be involuntarily admitted, physically restrained, and denied agency in decision-making about their health care.

It’s not easy to become stigma-free overnight (or, possibly, ever), but a good first step in challenging this discrimination is learning to see how the system works through the eyes of the people it’s failing. Many who took the Mental Health Structural Stigma in Healthcare eLearning Course said that the individual examples of stigma helped open their eyes to the issues.

It also helped them to recognize opportunities to address stigma, demonstrating that mobilizing knowledge to make positive change may be on the horizon. Nearly half of respondents said it encouraged them to make a change or take action to address structural stigma. Roughly the same number of graduates had gone so far as to plan ways to implement this new knowledge. At the same time, though, many expressed concerns that challenging the status quo might be an uphill battle.

“Yes, incorporating what I learned in the course into my work environment may mean I’ll face barriers such as institutional resistance, resource constraints, organizational culture, legal and regulatory constraints, and resistance from stakeholders,” says another survey respondent. “Overcoming these barriers will require persistence, advocacy, and creative problem-solving.”

Kristen Parks says that regular reviews and certification updates would also help people who want to transform the culture of care in any institution, citing annual CPR training as a standard practice. For example, everyone in a hospital from kitchen staff to administrators has to have CPR training. They may be in an elevator with a patient in an emergency, for example. Parks says this course could also be beneficial in a whole-of-healthcare manner.

“This course helped remind me that we always have to see the whole person, not just, say, the substance use,” Parks says. “There’s new knowledge out there and, if you’ve been out of school for 15 or 20 years, it may be completely different from what you learned.”