The new questions I am working on. I know someone out there has the answers.
Feel free to comment or email me at savas{at}mun.ca.
Thank you.
Sevtap Savas, PhD. Sept 20, 2023, St. John’s.
We would like to be a part of bigger solutions
Category: Blog
Project end report for stakeholders: Development of a community engagement & outreach strategy on cancer
We are very pleased to share the Project End Report for our latest Public Engagement project entitled “Development of a community engagement and outreach strategy on cancer”.
This is a project that was designed by the Public Interest Group on Cancer Research.
The project leads include John King a public member and Sevtap Savas, a researcher.
There is useful knowledge for all stakeholders, including communities, researchers, healthcare providers and administrators, and governments. Take a look.
Sevtap Savas, PhD. On behalf of the Public Interest Group on Cancer Research, Sept 7, 2023.
*revised on Sept 12, 2023 regarding “Affiliations”.
Public Interest Group on Cancer Research published their 2nd scholarly manuscript!
What a pleasure to share with you our new scholarly manuscript on lessons learnt, experience and perspectives gained as a result of the Public Conference on Cancer (Oct 15, 2022)!!
This conference was organized and delivered by the Public Interest Group on Cancer Research. I strongly believe that the public members of this group were crucial in making this Conference truly meaningful.
So, what do we describe in this paper?
Key points can be summarized as follows:
– “Participant feedback was overwhelmingly positive“
– More than 95% of the 52 feedback providers said that “The session was presented in an understandable manner” and that “I learnt valuable information in this session”
– “The most impactful/valuable parts of the conference identified by the survey participants were the patient stories and talks“
Am I surprised? Not at all; These were real folks, real stories. It is impactful.
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We also learnt about how the conference participants heard about the event:
– It was mostly social media and Memorial communication channels.
This is good to know, as we know we have work to expand these, so that we can reach out to more folks in NL.
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This Conference also helped us the Public Interest Group on Cancer Research increase our skills as conference organizers, moderators, and speakers. We really loved this experience, but the contents of this Public Conference on Cancer were also impactful on us.
-“Some of us felt hope for others who could benefit from the information shared during the Conference but at the same time felt guilty too that if the information was out/accessible earlier, it could help their loved ones who were lost to cancer“
That was me.
To date, I still feel guilty That I could not help my family members and friends as much as I could, as a cancer researcher. The pain I feel is nothing like I know. Please know your rights and risks, and protect yourself from cancer.
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The Public Interest Group on Cancer Research and I try very hard to bring useful knowledge on cancer prevention, early detection, and support to you.
We need your support to change things for the better. It will be the residents who will change things here.
We try everything in our power, by disseminating knowledge and our work in public and academic environments. We have local and global presence. But, how do we get the attention of local decision-makers?
Sometimes I feel like I keep hitting my head on that wall we call “silos”.
But luckily then I remember power of people and motivation given to us by the cancer patients and families, and I gather my strength I try and try and try.
One day, it will work out.
People have the power, not the systems or governments. We can change things for the better. I believe in this. I will keep trying.
NOBODY can say that I have not tried.
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Going back to paper, I wanna emphasize 2 points on patient speakers:
– Speaking about cancer can lead to emotional impact. So we had one patient speaker recorded their talk. We got one criticism about this – please understand that sometime it is necessary.
– The 2nd point is that sometimes speakers could not share their conference presentation materials publicly – we present these reasons on the paper. In one case it was because it could harm “personal safety of a patient speaker”.
We all are learning – so join us in this process. We will continue to provide a safe environment and conditions for patient speakers and speakers from vulnerable communities.
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There are many great points made, lessons learnt, and perspectives gained by organizing and delivering the Public Conference on Cancer We are beyond proud that we share these with you and globally in this scholarly paper.
Please check the paper – it is freely accessible here: https://journals.lww.com/jporp/fulltext/2023/07000/designing_and_delivering_public_engagement.6.aspx
You can also check this Saltwire article for a lay and short summary of this paper: https://www.saltwire.com/atlantic-canada/opinion/letter-nl-patient-scientist-partnership-continues-to-create-scholarly-knowledge-on-cancer-and-public-engagement-100887355/
Please remember to take great care of your health and do not be shy to demand better conditions, knowledge, resources, and services to protect and care for your health you deserve it.
Until next time,
Sevtap Savas, PhD. St. John’s, Newfoundland and Labrador, Sept 4, 2023
PS: quotes from Savas et al. Journal of Psychosocial Oncology Research and Practice 5(3):110, July-September 2023 https://journals.lww.com/jporp/fulltext/2023/07000/designing_and_delivering_public_engagement.6.aspx and may have been modified only to fit to the text
Committee works can provide opportunities to help control cancer’s effects
Folks,
Being an academic gives me a chance of doing lots of interesting things, like working towards cancer patient & family wellness through my roles in professional organizations.
I have been a member of the The Canadian Association of Psychosocial Oncology (CAPO for a few years now. I am also a very happy chair of its Advocacy Committee that does awesome work.
Watch this short video where my colleague and co-chair Kimberley Thibodeau & I summarize the work we have done during the last year as the Advocacy Committee of CAPO.
What a pleasure to work with Kimberley and other members of this committee to better conditions of and experiences for cancer patients and families in Canada and beyond.
I must say – Kimberley is the BEST collaborator I have ever worked with!! She is energetic, positive, and simply incredible – thanks for this experience Kimberley!
What works while partnering with patients in research?
Here is a mini talk I prepared for the Canadian Cancer Society’s Emerging Scholar Research Grants – Equity, Diversity, Inclusion and Patient Engagement Workshop, Expert Mini-series.
Hope the new investigators all will feel a little bit more comfortable and knowledgeable after this great session today.
I have more to say about the tips and recommendations about how to best work with our valuable patient partners, but this is a great start!
What is cancer-associated stigma?
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
Social stigma and discrimination associated with cancer in Newfoundland and Labrador
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
Cancer in Newfoundland and Labrador
I was delighted to be a speaker and talk about “Cancer In Newfoundland and Labrador” at the A.C. Hunter Public Library on June 7, 2023.
This was a hybrid event with in-person and virtual participants. Thank you folks for joining us that day!
I recorded my talk later on June 9, 2023 to make it accessible by all. I hope that it is beneficial to you and will help you protect yourself from cancer.
All the best to you
Study information – Social and workplace lived experiences of cancer patients in Newfoundland and Labrador
RECRUITMENT STARTED!!
Study Information
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?
Individuals who:
-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 krista.king@mun.ca.
Dr. Sevtap Savas is the scientist leading this project. She can be reached at 709-864 6507 or savas@mun.ca.
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 info@hrea.ca.
THANK YOU FOR YOUR INTEREST.