Measuring Structural Stigma in Health Care
Addressing stigma in health care is crucial to ensure people with lived and living experience of mental health or substance use health concerns have access to quality care. Measuring and monitoring is a core principle of any quality improvement initiative. By measuring change, organizations can ensure that actions are effective in reducing the negative impacts of mental health and substance use (MHSU)-related structural stigma in health care.
Explore this page to learn more about the measurement scales, early adopter approaches using them, and related tips and resources to support a journey of commitment to a stigma-free health system.
What is structural stigma?
In health care, structural stigma encompasses the organizational and societal rules, policies, procedures, laws, and cultural norms that increase stigma and raise barriers for people seeking to access the help they need. The result is unfair treatment of people with lived and living experience (PWLLE) of mental health and/or substance use (MHSU) problems or illnesses. Such unfairness leads to inequitable access and lower quality of care for these individuals. It can also perpetuate de-prioritization, devaluation, and “othering” of mental health and substance use health, as compared with physical health, within our health-care delivery, governance, knowledge building, and training systems. 1
Research has consistently identified the health-care system as a significant contributor to stigma for PWLLE.
Structural stigma also arises in cultures of care that exude negative and disempowering policies and practices. These “stigma cultures” undermine every aspect of recovery-oriented and person-centred care and act as an important barrier to system transformation. 2
Stigma cultures are a quality-of-care issue
Stigma cultures in health-care settings are the organizational-level norms, values, assumptions, physical façades, and practices that govern day to day activities and interactions. Aspects include poor quality of care, coercive care, a punitive and patronizing atmosphere, and disempowerment to make treatment decisions. 2
Shaping cultures of care is increasingly viewed as an important means of improving safety and performance outcomes across the full spectrum of health-care settings and promoting high-quality, person-centred care. The management of cultures of care is increasingly considered to be a key aspect of health system reform, and interest in the concept of promoting more caring cultures has grown. 3
Importance of measuring structural stigma
“It doesn’t count until you count it.”
– Stephanie Knaak, Ph.D, Senior Research Consultant
It is a groundbreaking way to approach health system reform. By measuring and addressing structural stigma, organizations can become champions in the quest to provide more equitable health care for PWLLE.
Structural stigma affects not only patients and their families but also the providers who care for them. Addressing structural stigma can protect staff from experiencing moral distress. A workplace that protects workers from moral distress supports staff to do their job with a sense of integrity and in a manner consistent with their values. Learn more about how to support health-care workers at work here.
Measurement Scales
An important first step to tackling structural stigma within health-care environments is to assess its scope and severity. To address this need, the Mental Health Commission of Canada (MHCC) developed the following tools to measure the scope and magnitude of stigma experienced by people with MHSU problems and illnesses:
This scale was designed to capture stigma cultures in any health-care setting (including family doctors’ offices, outpatient clinics, emergency departments, and hospitals) where people with a MHSU concern may seek care. It is a 23-item unidimensional scale.
This scale was designed to provide a cultural barometer of stigma experienced by individuals with a MHSU disorder receiving care in a MHSU service setting. It is a 20-item scale with two factors: an eight-item person-centred care factor and a 12-item coercive care factor.
The SCHCS and SSMHCS have been psychometrically tested using factor analytic procedures.
The scales are not meant to provide an objective measure of stigma. Rather, the scale scores provide a way to measure differences in experiences across different service user groups or health-care settings and/or to measure change over time. For example, higher scale or item scores (reflecting higher levels of stigma) for patient groups receiving mental health care compared with physical health care may suggest the presence of discriminatory or inequitable treatment. 2
The power of these tools is that they measure stigma from the perspective of service users themselves, thus providing a key quality assessment tool for any organization or setting interested in person-centred care.
The SCHCS or the SSMHCS can be the tool(s) that your organization needs to identify stigmatizing encounters reported by PWLLE as well to target areas in need of a change and/or to assess and monitor the impact of organizational interventions to reduce structural stigma over time.
Spotlight on early adopters
Throughout 2023 and 2024, the MHCC worked with two health-care sites to field test the measurement scales. The goal of these pilot studies was to better understand how the scale(s) work in different real-world health-care settings, identify redundancies to potentially shorten the scale(s), and facilitate opportunities for quality improvement initiatives by supporting organizations in establishing baseline measurements from which to assess the effectiveness of their interventions.
Learn about the approaches, results, and lessons learned through the two featured case studies.
Please note that both pilot studies took place at large academic hospitals; it is important to be aware of the context of a research study when considering available resources, study design, recruitment, and other factors. Health-care settings can vary substantially, and there can be differences in the way health-care research and quality improvement are approached even among provincial and territorial jurisdictions. It is important to understand that different settings will have different contexts, and methods and approaches will need to be adapted for each particular setting.
Frequently asked questions (FAQs)
Getting Started
Which scale should we select?
A: We recommend basing your selection on the type of health-care services your setting provides. SCHCS gathers more general information, while SSMHCS measures factors related to coercive care and patient-centred care, which are typically present in mental health and/or substance use health-care settings.
Are the scales reliable measures?
A: Yes. The scales have undergone psychometric testing, and through pilot site demonstration they have proven to be reliable tools to measure stigma cultures. Though data are limited, we are confident that they are effective and broadly adaptable to any health-care context.
The research for the SCHCS has been published in the peer-reviewed scholarly journal Social Psychiatry and Psychiatric Epidemiology. Read the academic paper here: Measuring aspects of stigma cultures in healthcare settings. https://link.springer.com/article/10.1007/s00127-024-02780-5#citeas
A second research paper on the SSMHCS is forthcoming.
Can we add qualitative questions in addition to the quantitative scale items?
A: Yes. You can collect whatever information will be helpful to your research. Early adopters of the scales included options for qualitative feedback for answers that were particularly negative to gather additional details and context about the participants’ experiences (i.e., if a participant answers a question with a negative versus positive response, there would be an open-field text option for them to provide additional comments).
Can my organization modify/adapt the scale(s)? Should the scale(s) be used in their entirety or can items be left out?
A: We recommend using the scale in its entirety, but if there are items that will not resonate with your clientele, they can be removed. It is also possible to use a combination of the two scales. The case studies provide information on how the sites in the pilot studies approached adapting the scales into include within their own surveys.
What is an ideal sample size to establish a baseline measurement?
A: There is no one ideal sample size. The ideal sample size for your project will depend on your setting, population, project aims, and available resources.
We know we need to include PWLLE in this work. Are there resources to support organizations in doing this in safe and meaningful ways?
Yes. We recommend the IAP2 Framework. This has recently been adapted by the MHCC advisory councils to support meaningful engagement of PWLLE in Engaging with People with Lived and Living Experience of Mental Illness Effectively: The MHCC’s Advisory Councils (PWLLE)
An additional resource: Guidelines for Partnering with People with Lived and Living Experience of Substance Use and Their Families and Friends.
Do ethics departments/committees need to be involved?
A: This will depend on the setting. Be sure to check local policies.
We don’t have expertise in research design and methodology. How can we get started?
Depending on the setting, ethics approval might be required to conduct this type of research. To prepare for this, a comprehensive research protocol must be developed. This should outline all the details of the study (the research question, methodology for data collection, analysis, etc.).
Implementation & Recruitment
What resources (staff, time, training, etc.) are needed to implement the scale(s)?
A: There is no one-size-fits-all approach. Be sure that all staff (or volunteers) understand the goal of conducting this research. Learn more about the recruitment approaches from the two case studies and apply the lessons learned to your own context.
How can we adapt/plan our recruitment and consent process to ensure accessibility while respecting patients with mental health and substance use health illnesses/issues?
A: Ensure PWLLE are centred in decision-making and project planning. This way, important considerations will have been discussed on ways to ensure respect, empathy, and accessibility are central components in your data collection methodology.
How should patients be encouraged or engaged to participate? Are there risks to providing incentives?
A: Incentives can be powerful motivators, but they do not come without risks. However, one of the health-care sites in the case studies found that offering incentives was a successful way to facilitate data collection in the emergency department. Other settings might not need incentives to support data collection (e.g., family practice or outpatient services).
What if patients cannot complete the survey (e.g. if they have cognitive impairment)?
A: Depending on your protocol, you could decide to engage a proxy to complete the survey on a patient’s behalf, or you could simply not include individuals with impairments from the data collection. If you are in a setting where many patients experience cognitive impairment, consider this factor during planning.
How can we effectively administer the scales to ensure diverse patient populations are represented?
A: It is important to consider how your clientele, particularly marginalized individuals, can access the survey. Keep in mind that clients might be experiencing precarious housing, work, or social situations. To gather a more inclusive sample, be flexible and understanding and offer alternate methods for data collection.
For how long should data be collected?
A: Each setting will have unique needs. A survey should be administered at least until the minimum sample size is achieved, which will vary from setting to setting. Do not attempt to collect baseline data for a long time as environmental factors will change over time, which might skew the results. Typically, a few months has been a reasonable time frame to achieve target sampling.
What kind of support can the MHCC offer to support implementation?
A: The MHCC has developed a comprehensive implementation guide that can support your efforts in producing transformative change. The structural stigma project staff is happy to answer questions to the best of their ability but cannot provide direct support for any quality improvement initiative.
Evaluation & Improvement
Will the scale(s) identify what interventions should be made?
A: No. The scale(s) are designed to assess the presence and severity of stigma cultures. Each site will need to determine appropriate interventions to suit their unique needs.
What metrics will demonstrate progress in reducing structural stigma over time?
A: Changes in scale scores over time will show your organization’s progress (lower scores indicate less stigma). Measures of statistical significance will tell you if the change is real (and not due to chance), and effect-size calculations can provide a sense of the magnitude of change over time.
What actions should be taken first (after establishing a baseline)?
A: Presenting the findings to your organization’s quality improvement team, which should include patients and/or family members, is a good first step. However, a project plan should be established before data collection begins.
How long after implementing an intervention should a survey be re-administered?
A: This will differ from setting to setting, but we recommend waiting at least three to six months before engaging in a second round of data collection.
What if the intervention is not successful and post-intervention data do not show a reduction in stigma culture?
A: Not every intervention is successful. Don’t become discouraged. Regroup with the project team and discuss the next steps. Forecasting possible challenges is a critical part of any project planning. It is unlikely that after appropriate interventions stigma cultures would worsen. Consider other factors that might be affecting the results.
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Other tips and related resources
Use available resources to increase awareness:
- The need to reduce stigma is often top of mind, but many don’t know how or where to start achieving this. We recommend using Dismantling structural stigma in health care: An implementation guide to making real change for and with people with lived and living experiences of mental health problems or illnesses and/or substance use concerns to support this work. The guide shares knowledge about the key features of structural change and strategies and the considerations for making it happen — and provides guidance to those interested in reducing MHSU-related structural stigma in their organizations.
- Free online training is available to help you learn more about the impacts of structural stigma in health care and how to dismantle it (created in partnership with CHA Learning). Mental Health Structural Stigma in Health Care Course | CHA Learning
Consider your organization’s readiness:
- Any intervention to address MHSU-related structural stigma first requires an understanding of what is needed: organizational readiness to disrupt existing norms, a clear vision for change, and acceptance of the discomfort that comes from thinking about and doing things differently. Completing a readiness assessment could help your organization to better understand how implementing the SCHCS or SSMHCS fits into your site’s current work and context. The Hexagon tool 5 can assess fit and feasibility at any implementation stage.
Be realistic:
- Transformative change takes time, and this is just the first step. You will be looking at your organization more critically and challenging existing practices and policies that may be perpetuating structural stigma. Expect pushback: remain persistent and plan for resistance.
Learn from others:
- The “spotlight on early adopters” case studies provide valuable insight into the process of implementing the structural stigma measurement scales. Review the methods, approaches, and lessons learned to help support the development of your implementation plan.
Other measurement tools
The Mental Health Commission of Canada has been championing anti-stigma initiatives since its inception. Here are some other stigma measurement tools and resources the MHCC has developed in collaboration with Opening Minds.
The Opening Minds Provider Attitudes Toward Opioid Use Scale (OM-PATOS) was designed to help professionals who respond to or care for people who are experiencing opioid use problems or are at risk of an overdose or poisoning, such as paramedics, fire or police services workers, health-care and social-care providers, pharmacists and counsellors.
Measuring Stigma Related to Opioid Use
Discover how to use the scale to evaluate and assess the impact of stigma reduction initiatives and hear about the MHCC’s work to assess opioid stigma reduction programs in the webinar Measuring Stigma Related to Opioid Use.
References
1 Grimminck, R., Knaak, S., Szeto, A., & Clair, V. (2023). The urgent need to address mental health and substance use structural stigma in BC. BC Medical Journal, 65(6), 225–226.
2 Stuart, H., & Knaak, S. (2024). Measuring aspects of stigma cultures in healthcare settings. Social Psychiatry and Epidemiology. https://doi.org/10.1007/s00127-024-02780-5
3 Gillin, N., Taylor, R., & Walker, S. (2017). Exploring the concept of caring cultures: A critical examination of the conceptual, methodological and validity issues with the caring cultures construct. Journal of Clinical Nursing, 26(23–24), 5216–5223.
4 Xavier, S. M., Malla, A., Mohan, G., et al. (2023). Trust of patients and families in mental healthcare providers and institutions: A cross-cultural study in Chennai, India and Montreal, Canada. Preprint. Research Square, rs.3.rs-2584056. doi:10.21203/rs.3.rs-2584056/v1
5 Metz, A. & Louison, L. (2018) The Hexagon Tool: Exploring Context. Chapel Hill, NC: National Implementation Research Network, Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill. Based on Kiser, Zabel, Zachik, & Smith (2007) and Blase, Kiser & Van Dyke (2013)
6 Modgill, G., Patten, S. B., Knaak, S., Kassam, A., & Szeto, A.C. H. (2014). Opening Minds Stigma Scale for Health Care Providers (OMS-HC): Examination of psychometric properties and responsiveness. BMC Psychiatry, 14(120). https://doi.org/10.1186/1471-244X-14-120
7 Knaak, S., Patten, S., & Stuart, H. (2022). Measuring stigma towards people with opioid use problems: Exploratory and confirmatory factor analysis of the Opening Minds Provider Attitudes Towards Opioid-Use Scale (OM-PATOS). International Journal of Mental Health and Addiction, 20, 3398-3409. https://doi.org/10.1007/s11469-022-00788-z
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