How patients’ experience is shaping the future for mental health.
Diagnosis versus identity.
‘Patient is’ versus ‘patient has.’
Shame versus worry.
These are important perspectives to the unique challenges individuals struggling with their mental health experience in their journey with the health system. Unlike physical health, seeking support for mental illness is riddled with stigma and bias – both conscious and unconscious.
It can show up in the language used, the environment for treatment or even care policies. However, research that examines mental health-related policies that may be connected to institutional stigma and practices that create barriers to access, help-seeking and the provision of mental health services, carries hope for needed change.
That’s why Emily Hilton, a health care worker with lived patient experience, is partnering with researchers from the Faculty of Nursing and the Departments of Psychiatry and Psychology at the University of Calgary on the EMBER study to understand stigma and bias around mental illness in the emergency room. The EMBER study, spearheaded by lead researcher Dr. Jacqueline Smith, is studying discrimination and bias within the health system, specifically in emergency departments where many patients may have their first interactions seeking support for their mental health. The study engages both patients and families with lived experience and those on the frontline of care, to explore stigma holistically on multiple levels (intrapersonal and institutional) and its impact on the delivery of care.
Emily was first hospitalized at sixteen for mental illness after spending much of her life supporting members of her family with their own mental health. Experiencing first-hand the shame and shame-associated environment that encouraged her to keep her struggles quiet, Emily was drawn to working in the area of mental health as a registered nurse to help more people like herself, and continues to advocate breaking down barriers between care providers, the system and patients.
“People would often say, ‘you shouldn’t tell people that’ when I shared my diagnosis and mental health challenges,” shares Emily. “It seems very counterintuitive to what we [as mental health care providers] are working towards in helping to break down stigma.”
The mental health stigma that patients experience can lead to shame and isolation from family and loved ones, who provide an important support network in the path to wellness. In cases where suicidal ideation requires immediate intervention, patients’ shame and past experience may play a role in their decision to seek help (or not).
There are other barriers that patients may experience that are best understood by giving a voice to those who have lived with a mental illness to help identify gaps and solutions to advance care.
In Canada, one in five people will need support for their mental health. While the advancement of the COVID-19 pandemic has opened the dialogue around mental health, it has also created a surge of need on the health system.
Working in collaboration, the goal of the EMBER study is to enhance patient-provider interactions and policies related to access and quality care for patients and families seeking support for mental illness in the Emergency Department and appropriate community referrals, beyond emergency, for a continuity of care.
The goal of Calgary Health Foundation’s investment in mental health is to revolutionize care and understanding around mental health treatment and support. The EMBER project is a partnership between Calgary Health Foundation, Foothills Medical Centre, Alberta Health Services and the University of Calgary to advance mental health services.
A note on the EMBER project:
For those interested in participating in the EMBER study, including patients and families who have visited Foothills Hospital Emergency Services for mental health-related concerns and staff from Foothills Hospital Emergency — including physicians and nurses, psychiatric physicians and nurses, and emergency protective services staff — contact the EMBER team directly at 403-441-3520 or EMBER.study@ucalgary.ca. Read more about the EMBER study here
