What role does the internet play in assisting young women with breast cancer? A new study being conducted at the BC Cancer Agency is exploring what type of information women are looking for, and how they obtain it.
Dr. Joanne Stephen, a researcher with the BC Cancer Agency's provincial cancer rehabilitation network, says this study will investigate the potential for using telecommunications to provide education and psychological support for people with cancer.
The study is focusing specifically on young women with breast cancer, says Dr. Stephen, because they have unique information needs, and tend to be frequent users of the internet in seeking health information.
"We know they are turning to the internet to find information, strength and companionship," Dr. Stephen explains. "The goal of our study is to understand how young women look for this information, how they use the internet, and what information they found and whether or not it met their needs."
The needs and behaviour of young women with breast cancer – defined as pre-menopausal or having elementary school-age children – are different than those of their older counterparts, says Dr. Stephen. There are issues surrounding sexuality, financial stability, child rearing, and work. Also, they tend to have more aggressive cancers and they also use the internet for seeking health information.
"The needs of young women with breast cancer are unique," says Dr. Stephen. "Young women want to know, 'Will I be able to have children? How do I talk about my cancer with a new date? Will I be able to continue working? How will I manage financially?' These are issues that aren't addressed through the usual channels."
This study is part of a larger study examining the role of the internet in providing health related information, conducted by communication professor Ellen Balka at Simon Fraser University, and is funded by the Social Sciences and Humanities Research Council of Canada.
Integral to this study, Dr. Stephen is working with "the Young and the Breastless," (Y&B) a group of young women who have had breast cancer. Their website will be used in the research for recruiting participants, and later, for posting the results of the study.
The results of the study will be important for caregivers to help young women determine not only how to find useful information on the internet, but how to evaluate what is out there, say Y&B member Vanessa Turke.
"If I were a young woman starting to look for information, knowing nothing, I wouldn't know how to the process all the information on the internet," says Turke. "It's hard to know which sites are applicable to young women, or even if the information is credible."
Women participating in this study will be asked send their stories to the BC Cancer Agency, who will then conduct online focus groups By doing this research, investigators hope to identify where the gap exists between what young women want and what is available, and ultimately help provide better access to supportive care on the internet.
Along with gathering information, Y&B members hope that this project will help build a sense of community and support among young women seeking support online during their journey through breast cancer.
"Not only is it difficult to navigate all of the information available on the internet, but it's difficult to navigate the experience itself," explains member Margaret Graham. "Connecting with others online is a way of managing the panic levels. If I can find four women at midnight online to discuss things with, it can help reduce the anxiety."
"Previous studies have showed the perspective of the care providers," explains Dr. Stephen. "This study evaluates what information women want to know, from the first moment they find a lump."
Women interested in participating in this study can visit the Y&B website at www.theyoungandthebreastless.com, phone 604.877.6000 ex. 2187, or email bevkev@telus.net.
For more information, please contact:
Nicole Adams
Public Relations Officer
BC Cancer Agency
604.877.6272
nadams@bccancer.bc.ca