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Eliminating stigma

Misconceptions can burden individuals living with cancer, researchers say

Research

By Memorial University

A team of Memorial University researchers have published their findings on how misconceptions about cancer affect individuals with a history of the disease in Newfoundland and Labrador.

Cancer is a common disease in the province — the current estimates suggest 2 in 5 residents will be diagnosed with cancer.

Three people sit next to each other on a bench with shrubs and a brick wall behind them.
From left are Drs. Eric Tenkorang, Teri Stuckless and Sevtap Savas.
Photo: Rich Blenkinsopp

In addition to physical, emotional and financial consequences, misconceptions and misperceptions about cancer can also burden individuals living with or beyond this disease, say Dr. Sevtap Savas, Faculty of Medicine; Dr. Teri Stuckless, Faculty of Medicine; and Dr. Eric Tenkorang, Department of Sociology, Faculty of Humanities and Social Sciences.

Stigma and discrimination

In the study, published in the Journal of Psychosocial Oncology, the team examined stigma and discrimination associated with cancer among residents of Newfoundland and Labrador with a history of cancer.

They also explored what features were linked to experiencing cancer-related stigma.

To achieve this, the team used an online survey and opened it for participation in the summer of 2019. The study was closed to recruitment before the COVID-19 pandemic in February 2020.

A total of 325 individuals from the province responded; analysis of the data revealed a number of findings.

“The most common sources contributing to these experiences were friends, insurance and financial companies, and workplaces.” — Dr. Sevtap Savas

For example, 1 in 4 respondents reported stigmatization due to their cancer history.

A smaller but still important portion of the respondents reported that they were discriminated against because of their cancer history (1 in 7 respondents).

“The most common sources contributing to these experiences were friends, insurance and financial companies, and workplaces,” said Dr. Savas, “and the most common reported impacts of cancer were related to insurance, social relations, and workplace opportunities.”

The researchers also explored factors associated with experiencing stigma.

For example, Indigenous respondents were at an increased risk of social stigmatization due to their cancer history compared to white respondents.

However, they caution that since the number of Indigenous respondents was small, these preliminary results need validation.

“Many respondents experienced only positive support from others.” — Dr. Teri Stuckless

They also found that respondents younger than 45 years of age were at an increased risk of experiencing stigma compared to older participants.

And, individuals diagnosed with advanced (stage 4) cancer were at a higher risk of experiencing self-stigmatization compared to respondents diagnosed with early-stage cancers (stage 1).

“On the other hand, a large portion of the respondents had not experienced stigma or discrimination because of their cancer history,” said Dr. Stuckless. “Many respondents experienced only positive support from others and said satisfaction with health-care providers was also high.”

Policy changes needed

The researchers say “we do not have to wait” to eliminate the marginalization of cancer-diagnosed individuals.

They are cautious about their findings due to several limitations, including the limited sample size. Notwithstanding, they do have several policy suggestions.

For example, health-care providers may recognize stigmatization and its negative effects on individuals with a history of cancer, the team says.

They can then provide support to these individuals to help cope with the psychosocial consequences of cancer-related stigma.

They also say that each one of us — family members, close friends, coworkers, health-care providers and members of the general public — can self-educate and increase awareness about cancer-associated stigma and discrimination, and their effects on individuals diagnosed with cancer.

There are other policy changes that can help, as well.

“Workplace policies can be implemented to reduce the discriminatory or stigmatizing interactions in the workplace,” said Dr. Tenkorang. “Programs may be implemented specifically to provide financial/insurance support during the cancer survivorship phase.”

Interested individuals invited to participate in new study

If you are 18 years or older, living in Newfoundland and Labrador, diagnosed with cancer in the last five years and would like to discuss your social and workplace experiences in a group setting, you may participate in this study.

If you are interested in participating, please contact Krista King at krista.king@mun.ca or (709) 864-4618).

You can also contact the study lead Sevtap Savas at savas@mun.ca or (709) 864 6507).

The authors thank all respondents for participating in the published study; Mercy Winsor and Charlene Simmonds for their contributions to the published study; Beatrice Hunter Cancer Research Institute, N.S., and the disciplines of Genetics and Oncology, Faculty of Medicine, Memorial University, for funding the published study.


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