Breast Cancer and Work: Survey 1


Faculty Principal Investigator: Dr. Lucie Kocum, Dept. of Psychology, Saint Mary’s University, Halifax, NS B3H 3C3

Student Co-Investigator: Sarah Kehoe, Master of Applied Health Services Research, Saint Mary’s University, Halifax, NS B3H 3C3

Study Contact telephone numbers: (902) 491-8628 OR (902) 491-6356
Study Contact emails: WorkWellness@smu.ca; Lucie.Kocum@smu.ca

SMU REB File # 17-303


INTRODUCTION AND PURPOSE OF THIS RESEARCH
Thank you for agreeing to participate in this survey on understanding newly diagnosed breast cancer patients’ experiences on the barriers and effects of cancer and the workplace. This survey should take 20 minutes and all responses will remain anonymous. By completing this survey, you are agreeing to participate in this research. If you have any questions about this study or would like more information, please contact the Student Co-Investigator, Sarah Kehoe (WorkWellness@smu.ca).

WHO IS ELIGIBLE TO PARTICIPATE IN THIS STUDY?
To be eligible to participate in this study, you must be a woman, 18 years of age or older who has received a breast cancer diagnosis within the last five years. You must have been employed at the time of diagnosis and be living in Canada. We aim to recruit 362 participants for this study.

WHAT DOES PARTICIPATING MEAN?
In all, the study is made up of 5 surveys, which will each take about 20 minutes to complete, over the course of a year. The surveys are self-administered online surveys about your breast cancer and work experience. You will not be asked to disclose any personal information about your co-workers or employer and you have the option to skip any questions you do not feel comfortable answering. Personal health information will be included in the survey including specifics such as: date of breast cancer diagnosis, stage of breast cancer, treatment plan, symptoms, other major illnesses participant have been diagnosed with. All responses will remain anonymous and be saved on a secure Saint Mary’s University server. The survey will not ask for your name, or any other identifying information, aside from your email address. We are collecting your email address so we can contact you for the follow up surveys. Researchers may contact participants for further information in regards to the current study (i.e. feedback, clarification of responses) or for future research participation. If you wish not to be contacted please email WorkWellness@smu.ca.

The follow-up surveys will be sent to you by our research team:

Survey 2: in 30 days from today
Survey 3: in 3 months from today
Survey 4: in 6 months from today
Survey 5: in 1 year from today

WHAT ARE THE POTENTIAL BENEFITS OF THIS RESEARCH?
The findings of this study will provide women with breast cancer, employers, and other workers with helpful information on how they can define and contribute to a psychologically healthy workplace response to breast cancer. With an increased understanding of accommodation among all stakeholders the workplace may allow women who have experienced breast cancer to derive maximal—and healing—benefit from positive engagement in their valued social role as a member of staff. Findings from this project will also have broader implications for individuals who are experiencing other serious illnesses, and want to maintain their work roles.

WHAT ARE THE POTENTIAL RISKS FOR PARTICIPANTS?
There is no danger of physical or social risk to you as a consequence of your participation in this study. Some aspects of the study may cause you some discomfort or stress, including feelings of emotion as you will be asked to think about your experiences regarding cancer. Dr. Kocum has been exploring these issues for 10 years and has studied over 250 women with no one ever having expressed any consequences; however it is a possibility in which we take very seriously. You will be provided with information of a free counselling service you can consult if you have any discomfort or stress due to this study. We also ask that you notify us at (902) 491-6356 or by email at Lucie.Kocum@smu.ca if you experience any discomfort during or after the survey so we can ensure this is addressed and necessary action taken to prevent any further issues.

HOW CAN I WITHDRAW FROM THIS STUDY?
Your participation in this research is voluntary. You may withdraw your consent at any time and discontinue participation without penalty prior to the end of the questionnaire. You do not have to answer questions you do not want to answer and are welcome to stop the survey at any time if you no longer wish to participate. To leave the survey you can close your browser. Incomplete information may be included in the analysis of the responses.

WHAT WILL BE DONE WITH MY INFORMATION?
All information you provide will be stored on a password-protected computer on campus at Saint Mary’s University. The computer transferred data will be retained for a minimum of 5 years after publication. Individual information will not be shared outside the research team and results will be reported in aggregate (group level) form only. The information you provide will be used to understand how women experience work during and after their breast cancer diagnosis and treatment, as well as, to help formulate future research ideas and directions.

Information provided will be collected anonymously, which means no responses will be connected directly to you. Only the researchers listed below will have access to the survey results. All research disseminated will exclude any personal identifiers to you or your workplace, as only grouped data will be reported. The general findings will be presented in a master’s thesis (Ms. Sarah Kehoe, Saint Mary’s University) and will be presented at conferences or in scientific journals. It is expected the research will help us understand how women are affected by cancer and the role of the workplace during a diagnosis of cancer. Moreover, it is anticipated that the findings of the research mentioned above will be presented to the scientific community through conferences, scientific papers, newsletters, brochures and workshops.

HOW CAN I FIND OUT MORE ABOUT THIS STUDY?
We know some people may have questions about this research project, and we would be happy to talk about this with you. Please don’t hesitate to reach out if you should have further questions about this study. Please contact our research team by phoning (902) 491-8628 or email us at WorkWellness@smu.ca. We will aim to respond within 72 hour time frame, if not before. If you would like to be informed of the results of this study, please contact us at Lucie.Kocum@smu.ca in August 2018.

For psychological or emotional support it is advised you talk to your physicians and care team. If you are facing direct distress as a result of your participation please contact Dr. Lynne Robinson at the contact information below:

Lynne Robinson
Registered Psychologist
Tel: (902) 464-1157
Lynne.Robinson@dal.ca

Consent

I understand what this study is about and appreciate the risks and benefits. I have had adequate time to think about this and have had the opportunity to ask questions. I understand that my participation is voluntary and that I can end my participation at any time prior to the end of the survey. I have read the above statements and freely consent to participate in this research: 
Would you like to be notified of the findings of the study?