Confronting Intersectional Stigmas Across the Cancer Care Continuum
Gretchen McNally, PhD, MPH
Gretchen McNally, PhD, MPH, discusses how intersectional stigmas—rooted in social biases around race, gender, socioeconomic status, and other identities—negatively affect cancer care across the continuum, influencing treatment access, clinical trial participation, pain management, and adherence, and highlights the urgent need for provider awareness, communication strategies, and resilience-building interventions to address these systemic gaps.
Please state your name, title, and any relevant clinical experience you’d like to share.
Gretchen McNally, PhD, MPH: My name is Gretchen McNally. I'm a nurse practitioner scientist at the James Cancer Hospital, part of Ohio State. My clinical background is in hematology, specifically lymphomas. I've worked in an immunodeficiency cancer clinic for over 13 years with people with HIV, solid organ transplants, autoimmune disorders who go on to develop a cancer, usually a lymphoma or a Kaposi sarcoma.
Related to that, I started developing a real interest in addiction in people with cancer. I started learning more and more about stigma. When I went back to school to work at my Master of Public Health, I was able to become an expert in cancer-related stigma. That's where I was introduced to this idea of intersectionality in the cancer world. That's where my interest has gone.
More recently—maybe 4 or 5 months ago—I moved into this 80% research role, and I'm trying to build on my expertise and knowledge and develop some research studies to support it.
How do intersectional stigmas manifest in cancer care, and what are some of the most pressing challenges they create for patients across the care continuum?
Dr McNally: That's a great question. Before we even delve into stigma, it's important to realize what do we mean by stigma? It's a negative belief characterized by attitudes. It's a mark of shame. Stigma is a social phenomenon. It evolves over time and may be different between different cultures, for example. It's when we identify a difference between us and someone else, and we start labeling them, separating “us” from “them.” Those labels are linked to stereotypes and false information, like from the media or movies, that can even further strengthen these stereotypes.
Stigma is complex too. It's multilevel, meaning that it can be within or between individuals, as well as communities, organizations, society. There are several different types of stigma, like perceived stigma, public stigma, or self-stigma (ie, within the self). Intersectionality acknowledges that people may have more than one stigmatized identity—gender, for example, or race, ethnicity, age. It's important to realize that not all stigmas are created equal.
I like to say the sum is greater than its parts. These multiple stigmatized identities can be synergistic and cumulative. Cancer is one of the most highly stigmatized conditions, certainly, with some cancers being more stigmatized than others, especially when individuals are blamed for causing their cancer, for example.
When we think about intersectional stigmas occurring across the cancer continuum, from prevention through survivorship. For example, people can be afraid of a cancer diagnosis. Afraid of what that will mean for them or how they'll be treated. Stigmas can result from stereotypes linked to diagnosis, such as fatalistic beliefs that nothing can be done.
Intersectional stigmas may manifest as a barrier to help seeking and they can negatively impact the quality of care received from health care providers. Intersectional stigmas may lead to unequal access to treatment or care, for example. Even survivorship can be impacted, from job loss related to discrimination, to decreased adherence to recommendations, or receiving help from long-term side effects.
What are some common ways stigma influences treatment decisions, particularly regarding clinical trial participation, pain management, or adherence to recommended therapies?
Dr McNally: This is a great question. There are many different pieces to it. Starting with treatment decisions, especially clinical trials, people may not be offered clinical trials because of stigma from the provider related to their race, gender, culture, maybe even their socioeconomic status or education level. Individuals may not be interested in clinical trials or may say no in part because of events in the past that have led to medical mistrust or a stigmatized idea of clinical trials as “being a Guinea pig.”
Moving into pain management—substance use disorders and addiction are one of the most stigmatized conditions, and the opioid epidemic has definitely impacted pain management. People with cancer-related pain may be afraid that they will be stigmatized if they need pain medication as a person with cancer or a person with an addiction, they could be characterized as drug seeking. Providers could stigmatize certain people based on their appearance, for example, or other identities because of their concern for addiction or diversion of their medication.
Moving on to adherence, stigma can affect adherence to recommended therapies. There might be misconceptions about treatment, efficacy, or side effects. For example, visibility is a key factor in the level of stigmatization. Often people with cancer are stigmatized and easily recognized by their alopecia or hair loss from their treatments.
Stigma can lead to isolation from friends, family, peers, which only further strengthens misconceptions, or perhaps people feel stigmatized by the medical personnel when and where they receive their treatment.
What are the key gaps in current clinical practice when it comes to addressing intersectional stigmas in oncology care?
Dr McNally: Stigma is a relatively new concept, which has been getting increased attention. That being said, research is lacking, which directly impacts clinical practice downstream. There are no clear guidelines. Clear evidence of effective stigma reduction interventions is lacking, which makes integration within the health care system challenging. Health care professionals themselves lack awareness, and they don't have the training or the resources available to recognize and respond appropriately to intersectional stigmas in oncology care.
What are some effective interventions—whether at the provider, institutional, or policy level—that have successfully reduced stigma in cancer care?
Dr McNally: The first thing that's important is to realize that stigma impacts everyone. Stigmatized identities are unique to each person, and they're not always visible. [It’s also important to] recognize that cancer by itself is a stigmatizing condition. The first way that you can address stigma is through communication. This not only helps reduce but prevent stigma.
Using clinical, nonjudgmental language in all encounters and in all forms of communication [is important]. That means talking the same to friends, families, colleagues, [as well as] sending emails, written communication, messages, and social media posts. Using person first language, such as “a person with cancer” rather than “a cancer patient.” This is really empowering and is considered a person-centered approach.
Stigma is universal in among conditions. There might be specifics related to some cancer sites more than others. Particularly, blaming the victim, such as with lung cancer. But there are more commonalities than differences.
Resilience is the ability to adapt, to bounce back from adversity. It's considered protective against the harmful effects of stigma. It's important to not only focus on reducing stigma but also protecting against stigma. One way to strengthen resilience in cancer care is through connection and community. Building strong communities and social support networks—which can include friends, families, peers experiencing the same or similar circumstances, and allies who can advocate for others—is key. These are things that everyone at any level, provider, institutional, or even policy, are able to implement today.
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