What is cancer-associated stigma?
How does it look?
Why does it happen?
How do we measure it?
What can we do about it?
We should ask these questions to understand the lived experiences of individuals with a history of cancer.
Cancer-associated stigma is a form of depreciation of the individual because of their cancer diagnosis.
Stigma can be defined as unfair and unjust treatment of individuals because of a feature (in this case, cancer).
Cancer-associated stigma does not always happen, but when it happens, it can transform into discrimination.
It is a social justice issue.
Cancer-associated stigma can be fueled by misconceptions, myths, misperceptions, and fear.
For example: not all cancers are caused by smoking (though it is a significant risk factor). Another example: Gynecological/anal/colon cancers can be a subject of taboos/myths because of their locations in the body.
Making assumptions of the individuals in social/familial as well as workplaces can stigmatize them too. For example; trying to make decisions on their behalf; not providing the same opportunities as before.
While we all wanna support the cancer patients, why do we stigmatize or discriminate them, then?
In most cases, it is unintentional.
Sometimes, it is the “business model” – for example, in the case of insurance companies.
In our study we found that friends were the leading source of stigma in the NL population.
We do not know, but one hypothesis is that they do not how to interact with patients or they feel fear.
In our study, in terms of discriminations, insurance companies/banks and workplaces were the leading source in our study.
Policy changes and extra financial protection for cancer-affected persons needed.
We may get uncomfortable when someone we know/dear get a cancer diagnosis.
But we can move beyond this fear & do what we wanna do – support the patient in a way that they want.
Communication is key.
Cancer is a challenging disease and support we can get at that time can be crucial.
Also note the clinic support offered by the Provincial Cancer Care program here: https://cancercare.easternhealth.ca.
Lack of support as well as stigma and discrimination can negatively affect the health and quality of life of the persons diagnosed with cancer. They can also affect their financial well-being
These are opposite of what we, healthcare system, governments & cancer organizations are trying to do.
So let’s take a moment to think, read & contemplate about how we treat & interact with cancer patients.
In our study, some of the questions we asked participants to measure cancer-associated stigma were the followings:
“I feel guilty because I have/had cancer”
“I feel set apart, isolated from the rest of the world because I have/had cancer”
“I stopped socializing with some people because of their reactions after learning I have/had cancer”
(Modified from the Catoldo Lung Cancer Stigma scale: http://onf.ons.org/onf/38/1/measuring-stigma-people-lung-cancer-psychometric-testing-cataldo-lung-cancer-stigma-scale)
I believe that we all have a role in erasing cancer-associated stigma, marginalization, discrimination, and unfair treatment of individuals with a history of cancer.
Being aware of the stigma experiences, as we have done in our study, is a great start.
But we need to move beyond awareness & act on cancer-associated stigma and discrimination so that the individuals diagnosed with cancer are not extra burdened.
Join us in this journey!
We will continue these conversations over time. Our job has just started.
I thank my colleagues involved in the study (Drs. Teri Stuckless, Eric Tenkorang, Charmane Simmonds, and Ms. Mercy Windsor), all participants, and the funders (Memorial University – Disciplines of Genetics and Oncology; Beatrice Hunter Cancer Research Institute) for making this study a possibility and Dr. Cataldo for giving is the permission to modify their stigma scale for our study.
For a lay summary of our study, please see: https://gazette.mun.ca/research/eliminating-stigma/
For a personal account of this study as a researcher, please see: https://www.saltwire.com/atlantic-canada/lifestyles/commentary-what-do-cancer-affected-individuals-experience-in-nl-100862689/
To read the scientific manuscript describing this study, please see: https://journals.lww.com/jporp/fulltext/2023/04000/social_stigma_associated_with_cancer_in_the.4.aspx
Until next time, please take care.
Sevtap Savas, PhD. July 27, 2023 Newfoundland and Labrador
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