Discrimination – Strength in Community

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.

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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.

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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.

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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.

Why?

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.

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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.

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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.

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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)

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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.

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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

#CancerStigma #NewfoundlandAndLabrador #Cancer #Stigma #SocialJustice #MemorialUniversity #KnowledgeTranslation

July 27, 2023August 24, 2023 by sevtapsavas Categories: BlogTags: Canada, cancer, Cancer associated stigma, Cancer burden, Cancer stigma, Discrimination, Insurance companies, Knowledge translation, Lived Experience, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, Public Engagement, Public Outreach, Social Justice, Stigma Leave a comment

I am excited to say that our work exploring the social stigma and discriminations associated with cancer in the Newfoundland and Labrador population has been published!

This is a study that required the expertise and effort of a great multidisciplinary team, including Mercy Winsor, Dr. Charlene Simmonds, Dr. Teri Stuckless and Dr. Eric Y. Tenkorang. I thank my colleagues for their hard work, as well as the funders Beatrice Hunter Cancer Research Institute (Nova Scotia) and matching funds provided by the Disciplines of Genetics and Oncology at Memorial University.

Of course, the biggest thank you goes to the study participants – all 325 of them – who helped us see their side of the cancer story. Thank you folks – without you we would not know so much about your post-cancer experiences. We will continue to talk about your lived experiences, increase awareness about your needs, and design work to help eradicate stigma associated with cancer.

I am also excited to say that based on participant input, we are ow conducting a 2nd study on the lived experiences of cancer-affected individuals in Newfoundland and Labrador.

This new study aims to get a deeper understanding of the social and workplace experiences of individuals diagnosed with cancer and to see whether these individuals living in different parts of the province, young individuals and individuals who are a member of the 2SLGBTQIA+ community have similar or different experiences when it comes to cancer lived experiences.

For further information about the new study, please see here: https://strength-in-community.ca/2023/03/06/study-information-social-and-workplace-lived-experiences-of-cancer-patients-in-newfoundland-and-labrador/

To access our published study on social stigma and discrimination associated with cancer, please see here: https://journals.lww.com/jporp/Fulltext/2023/04000/Social_stigma_associated_with_cancer_in_the.4.aspx

Thank you

Sevtap Savas, PhD

June 12, 2023, St. John’s, Newfoundland and Labrador

June 12, 2023June 12, 2023 by sevtapsavas Categories: BlogTags: Canada, cancer, Cancer associated stigma, Cancer stigma, Discrimination, Exploratory study, Lived experiences, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, Public Engagement, Public Outreach, St. John's Leave a comment

Tag: Discrimination

Social stigma and discrimination associated with cancer in Newfoundland and Labrador

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