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.
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.
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.
Study Title:Social and workplace lived experiences of cancer patients in Newfoundland and Labrador
Why do we want to conduct this research?
Cancer is a common disease affecting our population. Understanding experiences of individuals living with, through, or beyond cancer is important in order to inform social, workplace, and healthcare programs and policies.
What are our goals?
We aim to understand cancer patients’ experiences regarding their social and workplace interactions in Newfoundland and Labrador population.
We also would like to know whether these experiences differ between:
individuals from different geographic regions of NL,
individuals diagnosed with cancer at a young age (before 45 years of age), and
individuals, who are members of the 2SLGBTQIA+ community.
How are we going to achieve our goals?
We will invite interested individuals to join for a group discussion over the phone or in a virtual meeting. Meetings will be recorded so that we can transcribe the discussions. These discussions will then be analyzed to distill key points.
We will repeat these steps for each patient group that we describe above. We will then compare the key points identified from each group.
We will also ask you to provide us basic information about yourself, your economic status, employment, and disease (cancer).
Why participate in this study?
Our previous studies and interactions with cancer-affected individuals indicated that there may be changes in social and workplace experiences following a cancer diagnosis. By conducting this study, we hope that we will get a better understanding of these experiences.
Understanding cancer patients’ experiences about their social and workplace interactions in turn can help with future experiences and practices. For example, it can:
1) inform public education programs and campaigns
2) improve life experiences of cancer patients, their quality of life and social outcomes
3) implement better healthcare and social support services as well as workplace policies
4) move towards a more inclusive society
These changes then can positively impact the life and workplace experiences of future cancer patients in our province (and possibly beyond).
Who can participate in this study?
-reside in Newfoundland and Labrador;
-are at least 18 years of age;
-have had a cancer diagnosed in the last 5 years (at the time of recruitment);
-have worked following their diagnoses;
-can use and have access to phone or internet and computer
are eligible to participate.
Additionally: we are looking for individuals diagnosed with cancer in each of the Regional Health Authority Regions (Eastern, Western, Central, Labrador and Grenfell),
or those who are diagnosed with cancer before the age of 45 years of age,
or those who identify as members of the 2SLGBTQIA+ community
How can you participate?
Please contact the research team.
Ms. Krista King is the graduate student, who will be conducting the focus group discussions and other procedures. Krista will be happy to talk to you about this study and answer any of your questions. Krista can be reached at 709-864-4618 or email@example.com.
Dr. Sevtap Savas is the scientist leading this project. She can be reached at 709-864 6507 or firstname.lastname@example.org.
Health Research Ethics Board
If you have any questions regarding your rights as a participant, you can contact the Health Ethics Research Board in St. John’s at 709-777-6974 or email@example.com.