A research study at the University of Nebraska Medical Center is looking for 20 women with new breast cancer diagnoses who live in rural areas, to participate in an at-home Internet support program.
For the three-month study, a new breast cancer diagnosis is considered less than three months after diagnosis.
Collaborators in the study include: the Callahan Cancer Center, Great Plains Health in North Platte, Lisa Kosmacek, clinic manager/research and Shelia Markley, oncology nurse navigator; Faith Regional Carson Cancer Center in Norfolk, Cindy Montgomery, clinical research nurse and Melissa Hahn, oncology nurse navigator; and the Fred & Pamela Buffett Cancer Center in Omaha. Other cancer centers across Nebraska will soon join.
Called CaringGuidance™ After Breast Cancer Diagnosis, the program was developed by Robin Lally, Ph.D., a professor at the UNMC College of Nursing and member at the Fred & Pamela Buffett Cancer Center, after more than 15 years of caring for women and talking to them about their thoughts and emotions through the treatment process.
The program has six modules with more than 20 sub-themes that address thoughts and worries while providing support and coping strategies to reduce distress of the daily social and emotional challenges of a new cancer diagnosis. They are: Are My Reactions Normal?; What Does This Diagnosis Mean?; Who am I Now?; What are Strategies to Care for Myself?; and Moving Forward For Family and Friends.
It contains information most requested by newly diagnosed women plus 27 mental exercises to work through common problems, and more than 100 video vignettes from 11 survivors and family members. It also includes advice about how to get the most from appointments and a glossary of cancer-related words to support understanding.
Topics also include how to disclose the cancer diagnosis to other people, receiving and accepting support, dealing with unsupportive people, understanding the complexity of a cancer diagnosis and moving forward
“Women have said this is like a support group in a box,” Dr. Lally said. “That’s what makes it ideal for rural women. They don’t have to go to an in-person support group, they don’t have to travel anywhere, and they can have the support from women who are in the program sharing their experiences.
“It helps women challenge their thinking, gain various perspectives and realistic expectations to cope with events that affect life with a new cancer diagnosis.”
The small, three-month pilot study will give rural women the opportunity to use the program and provide feedback. The women will complete forms when they start the study and once a month until they complete it.
The study will form the basis for a future larger study that will compare one group of women using the program to a group who don’t use it.
“After using the program for our one-week focus group, the women didn’t want to give it up. And these women were survivors, they were years past their diagnosis,” Dr. Lally said. She said women described the CaringGuidance program as a site they could trust and one that provided “an oasis of support” they wished they’d had when they were diagnosed.
She said there are plenty of websites that provide information about breast cancer types and treatment but CaringGuidance is the only program her colleagues know of that was designed with help from breast cancer survivors.
In addition to Dr. Lally, the research team includes Elizabeth Reed, M.D., Christine Eisenhauer, Ph.D., Ashok Mudgapalli, Ph.D., Kevin Kupzyk, Ph.D., Adam Mills, Ph.D., and Sydney Buckland, Ph.D. candidate.
For more information about the study, contact Dr. Lally at robin.lally@unmc.edu or 402-559-5464. Emails and calls will be accepted throughout the year. Volunteers will be reimbursed for their time.
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