Published September 25, 2014
The moment a woman hears “you have breast cancer” is a moment she never forgets.
Nearly 300,000 women in the U.S. will hear these words in 2014. In those first moments there is shock, fear and numbness. As the moments turn to days, women return to work and family, managing the best they can day to day, but often struggling with a lack of information and feelings of vulnerability, confusion and distress. Family and friends try to help, but with no physical signs of things to “fix” they may be at a loss as to what to do.
Women need their questions answered and they also need to learn how to cope with their changed life and emotions that seem to be on a rollercoaster. Often, women have nowhere — or do not know where — to turn for help in those first days after their breast cancer diagnosis.
A new program under study at the School of Nursing may be the answer.
The program, called CaringGuidance™ After Breast Cancer Diagnosis, was launched in October 2013 by Robin Lally, associate professor of nursing, and her team of collaborators. It is now in its second year of a 2½-year study.
CaringGuidance™ was created, says Lally, with women who have been recently diagnosed with breast cancer in mind.
“The program is part of a research project to test the patient satisfaction and effectiveness of the CaringGuidance™ program in reducing the distress, anxiety and depression women may feel after their diagnosis,” says Lally. “The hope is that use of CaringGuidance™ will support women’s psychological adjustment and emotional well-being in the first days to months after receiving a breast cancer diagnosis.”
CaringGuidance™ is provided over the Internet. There are two primary reasons for this. First, so that women can access the program immediately after hearing “you have breast cancer” when they feel most vulnerable and alone.
“Women don’t need to wait for their first doctor appointments, which may be weeks away, to get answers,” says Lally.
“Another advantage of providing CaringGuidance™ on the Internet,” she adds, “is that it allows women to use the program in the privacy of their homes, day or night. They can explore questions and feelings they might be embarrassed to ask others and in the middle of the night when cancer worries are often the worst.”
CaringGuidance™ is self-guided. Women may explore the learning modules, video advice from breast cancer survivors, journaling exercises, resources and a discussion board at their own pace.
“Not every woman has the same questions or concerns,” notes Lally. “Some women want to focus on certain topic areas, others on the videos, while others like to read the text. Women in focus groups who tested the program really liked the flexibility offered by this self-guided format.”
As women take part in testing the program, she says, they also are contributing to its improvement.
“Breast cancer survivors have contributed greatly over the last year by reviewing the program and providing feedback from their own experiences,” she says. To this expertise, she added scientific evidence from her own and others’ research, as well as input from physicians, nurses, psychologists and researchers so that women can feel confident in the program’s contents.
Lally’s research is funded by the American Cancer Society. Since receiving initial funding in 2011 to develop the CaringGuidance™ program, she has received three more grants from the Community Foundation of Greater Buffalo and the Foundation of NY State Nurses totaling approximately $37,000.
This additional funding has allowed Lally to develop and test an additional learning module to support coping of women’s friends and family members, and to enhance the program’s technical capabilities. This was done with the collaboration of Web designers and programmers from OtherWisz Creative Corporation of Elmwood, N.Y., and UB’s Center for Computational Research.
CaringGuidance™ currently is available only through Lally’s research study. To date, 47 women have enrolled.
Lally’s team hopes to enroll another 53 women by the end of 2015. Study participants so far are from Western New York and four other states.
“It’s quite thrilling,” says Lally. “The Internet format of the program allows us to offer study participation to women all over the U.S.”
Half of the women in the study are assigned to use the CaringGuidance™ program for three months and half only complete the monthly survey forms. This design allows Lally and her team to compare the emotional well-being of these two groups, which is important to understanding the program’s effectiveness.
“It is too early to analyze and share study results,” she says, “but we can say that our findings confirm that some women do experience significant distress following diagnosis and this distress often is not realized by health care providers.
“We are grateful to the women who, despite their distress, have participated in the study so we can determine whether CaringGuidance™ is effective and, if so, offer it to more women in the future.”
Women who are diagnosed with early-stage breast cancer and interested in learning more about the research study of CaringGuidance™ After Breast Cancer Diagnosis are encouraged to contact Lally at firstname.lastname@example.org or 716-829-2137 as soon as possible after diagnosis, or within the first two to three months after diagnosis.
Clinics interested in referring patients to the study also should contact Lally to learn more.