Squeezing lymphedema
Photo by Ashley Barnas October 24, 2019
UD students talk to cancer survivors to help design compression garment
Two University of Delaware students working out of the College of Health Sciences Innovation Health Design Lab hope to improve on the current offering of compression garments, using input from local breast cancer survivors to create a garment that is more comfortable and more likely to be worn.
Samantha Lampert, a second-year master’s student in the human nutrition program, and junior Clare Bohn spent the summer talking with more than 50 cancer survivors across Delaware about the challenges they faced wearing compression garments. Survivors shared stories about garments that were hot to wear, made their skin itch and were so difficult to put on they required another person to help them.
Lampert and Bohn are using that information for their work in the Innovation Health Design Lab, where they are designing a prototype for a compression garment that takes into account issues related to fit, feel and compliance. The garment is one of several projects underway during the 2019 fall semester in the lab, which aims to create innovative products that solve a specific need in a health population. October is Breast Cancer Awareness Month.
“We learned a lot about specific daily struggles that we didn't know about,” said Lampert, who is combining her hobby of sewing with her passion for creating health change. “We learned about different garments and the qualities that they preferred, and we learned a lot more about living with lymphedema. A lot of times, the garments are not aesthetically pleasing either, which makes it less likely for someone to wear them for the rest of their life.”
Long after the shock of a cancer diagnosis and the discomfort that follows from treatment, lymphedema can be a frustrating condition for cancer survivors to manage. Lymphedema is caused by a build-up of lymph fluid — usually the result of damage to the lymph nodes from cancer surgery or treatment — and it can lead to painful swelling in the extremities. Breast cancer survivors are at increased risk of developing lymphedema even years after their diagnosis because of the surgery, chemotherapy and radiation traditionally used to fight the disease.
There is no cure for lymphedema, but compression garments can help move some of the fluid away from the affected area. Unfortunately, these tight-fitting garments bring their own challenges when it comes to putting them on, and the difficulties in fit and comfort prevent some patients from using them on a consistent basis.
As the daughter of a breast cancer survivor, Lampert has seen firsthand how lymphedema can impact daily living. On innumerable occasions, Lampert has had to hold open a compression sleeve so her mother can squeeze her arm inside because she was unable to put the garment on without assistance.
“There’s so much focus and support for cancer treatment, but there’s not a lot of talk about what happens after,” she said. “I was able to see the everyday struggles my mom had in relation to the garment, which helped me get an idea of what might need to be done.”
Outreach
To get additional perspectives of people living with lymphedema, Lampert and Bohn reached out to several local cancer organizations, including two lymphedema clinics at ChristianaCare’s Helen F. Graham Cancer Center, as well as the Delaware Breast Cancer Coalition, a statewide nonprofit organization that provides education, outreach and support services for those who have been diagnosed with breast cancer or are survivors of the disease. The pair also hosted an event at UD’s Science, Technology and Advanced Research (STAR) Campus, where they interviewed people with lymphedema and their caregivers.
Lois Wilkinson, program director for education and survivorship at Delaware Breast Cancer Coalition, said there was a lot of interest from survivors in helping the students learn about lymphedema. She said doctors often go into great detail when describing cancer treatments, but there’s not as much information shared about some of the post-treatment issues that can arise. It can be frustrating for patients with lymphedema, who feel self-conscious about how they look while also dealing with physical pain from the swelling.
“When a company is making these sleeves, [survivors] have no say. Some of them really struggle,” Wilkinson said. “They were so excited to think they might be part of something new that could help them, but also other women.”
Community interaction is a central tenet of the Innovation Health Design Lab, and Bohn said their interactions with survivors deeply influenced their design process.
“We took some road trips to southern Delaware. We drove all over to meet people,” said Bohn, who is still transcribing and coding the information from the interviews. “We really felt a part of the community.”
As they continue to work on their design, Lampert said the experience has taught them the value of incorporating the input of the community in any design process.
“We now have a better foundation of knowledge thanks to our 50-plus participants and their stories, experiences and opinions,” Lampert said. “This is why the customer discovery step is so important. We know we have dozens of incredible individuals standing behind us as we continue on this journey.”
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