DAWN Canada is launching our fourth (4^th) annual Breast Cancer Awareness Campaign for Women with Disabilities and Deaf Women.

We asked Dr. Lucie Kocum, Partnership Director at the Partnership for a Healthy Workplace Response to Breast Cancer, to tell us about her recent work on breast cancer.

The Partnership, funded by the Canadian Institutes of Health Research and the Social Sciences and Humanities Research Council, is a nationwide working group of breast cancer survivors, big and small business representatives, the insurance industry, organized labour, disability management professionals (including the National Institute for Disability Management and Research), cancer advocacy groups, health professions and an interdisciplinary team of researchers, brought together to co-create a workplace intervention to improve the workplace response to breast cancer.

 

DAWN: What does the Breast Cancer Awareness Month represent for you?

Dr. Kocum: Given the prevalence of breast cancer, most people are touched by it in some way, whether they, themselves, have experienced breast cancer, or have a family member, friend, neighbour, or co-worker who has been diagnosed. Breast Cancer Awareness Month for the Work Wellness Lab at Saint Mary’s University gives us the opportunity to talk to people about the high unemployment rate of women with breast cancer and the associated psychological and financial impacts of this unemployment.

 

DAWN: Are there any recent findings from your research/project you’d like to share with our readers? What steps have you taken or intend to take to ensure that your research is inclusive of the experiences of women with disabilities and Deaf women?

Dr. Kocum: Given the 88% survival rate for breast cancer, one might assume that the survivor’s employment wouldn’t be significantly affected. However, breast cancer survivors have among the highest unemployment rate of all cancer survivors. In my research with colleagues Lynne Robinson (Dalhousie University) and Catherine Loughlin (Saint Mary’s University), I have found that women in precarious employment, such as part-time workers or workers without benefits, are particularly at risk for an interruption in their employment status following a breast cancer diagnosis. Although many women receive a great outpouring of support from their employers and colleagues, others face a lack of social support and accommodations. The Partnership is taking a systems approach to developing a workplace intervention to redress this (un)employment disparity.

A core value that defines the Partnership’s terms of agreement is respecting diversity. Collectively and collaboratively, we have built inclusion for persons with disabilities right into our budget and policies. For example, one of our policies is to hold meetings only in accessible venues. Another is to finance required accommodations so that individuals with disabilities do not incur extra expenses in participating. These accommodations include interpretive services available on our campus, as well as offer of materials in braille and large-print formats (adaptive, if online) for the visually impaired.

 

DAWN: Do you have statistics about women with disabilities and Breast Cancer?

Dr. Kocum: Breast cancer has been found to be as prevalent if not more prevalent among women with disabilities. Certainly screening is less prevalent among women with disabilities. Because women with disabilities are even further marginalised in the workforce, our discussion of the work experience of the disabled women with breast cancer becomes even more imperative. We invite DAWN Canada to engage in these discussions with us further.

 

DAWN: What are the barriers faced by women, particularly women with disabilities, when accessing Breast Cancer health services?

Dr. Kocum: Precious few resources about work are easily accessible to women diagnosed with breast cancer. Our collaborators and members of the Partnership, Christine Maheu (McGill University) and Maureen Parkinson (BC Cancer Agency), have produced the cancerandwork.ca website to provide survivors, healthcare service providers, and employers information about return to work and staying at work during the course of cancer.

Regarding the cancerandwork.ca web site, the deSouza Institute has partnered with our collaborators to produce a site that meets all the requirements of accessibility. Our ongoing evaluation plan with the website is to test it among all stakeholders to identify barriers that still exist, and to improve and redesign, as needed. Part of our strategy will include a special dissemination plan targeting Deaf women, as this population is at risk for receiving less information in accessible formats.

 

DAWN: What are your recommendations to improve breast cancer health service for women with disabilities? What are your thoughts on how we can work towards taking collective responsibility for ensuring that breast cancer research, prevention and health services are inclusive of all women?

Dr. Kocum: We need to take a systems approach to improving services for all individuals. This means that all individuals in the system must be included from inception to delivery. For example, my close friend has a mobility impairment. Quite unbelievably to me, she has to book her mammography tests at the hospital for because breast screening clinics in her area are mal-equipped. Mammography machines require women to stand for testing, and only the local hospital has a seated version. If mobility impairments were taken into account right in the design of mammography machines, there would be zero disparity in breast cancer screening based on that disability. To be frank, we need to scrap modus operandi that are “good enough for the average” and replace them with “good for all.”

I talked about our Partnership developing a workplace intervention to improve the workplace response to breast cancer. I have also talked about the cancerandwork.ca website.

There is also DAWN Canada’s work in raising awareness of the barriers, whether they are systemic or physical, that women with disabilities and Deaf women face.

We hope that together—through a systems approach to stakeholder-generated interventions, and through the provision of information to the major stakeholders in the system—we will improve the working lives of women diagnosed with breast cancer.

 

DAWN: As a final question Dr. Kocum, do you think that DAWN Canada’s Learning Brief on Breast Cancer is useful?  Why?

Dr. Kocum: The information in the learning brief is critical knowledge. Healthcare practitioners don’t always realise that barriers create serious health disparities. For example, in the case of my good friend, it’s not just a hassle booking a hospital mammogram versus a quick clinic visit, but it’s a health risk if the patient has to wait 3 extra months for that hospital screening. This briefing is a first step in translating research information in a concise and understandable way and bringing it to the attention of key players in the system so that they can effect change. In encouraging women to be their own advocates, I’d distribute stacks of these briefs to disabled and deaf women so that they can give one to every one of their healthcare service providers.

 

 

Dr. LUCIE KOCUM

Lucie Kocum, PhD is a research scientist and mother of two daughters living and teaching in Halifax, Nova Scotia at Saint Mary’s University. Born in Ottawa, Ontario, Lucie is the daughter of Czech immigrants. During the holocaust, her family protected people from harm, risking and ultimately sacrificing their lives. Decades later, her parents narrowly escaped the Soviet Invasion of 1968 and made Canada their new home. Her heritage forms the basis of Lucie’s interest and passion in social justice and psychology. Throughout her academic career, Lucie has lobbied for the rights of others through her activism in unions and other advocacy associations. Through her research, she seeks to empower women through meaningful changes to the status quo, particularly in the workplace. For the past 5 years, Lucie has been focused on creating a better life for all women with breast cancer. Her latest challenge is protecting the livelihood of these women. Lucie is the project director for the Partnership for a Healthy Workplace Response to Breast Cancer which is based in her Work Wellness Lab (workwellness.com).

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