Did you or someone you know undergo breast cancer treatment

Patients reveal the emotional burden of treatment during lockdown.

Living with breast cancer is daunting at the best of times. But when the COVID-19 pandemic hit, people undergoing treatment fought more than just the disease. Fear, stress and isolation were constant companions. "It was a really lonely experience," said Beth Counselman-Carpenter, PhD '14, associate professor of social work. "In addition to serious interruptions in healthcare delivery, patients suffered the loss of vital support systems."

Dr. Counselman-Carpenter recently authored "The Lived Experience of Breast Cancer Patients During the COVID-19 Pandemic" (Health & Social Work, November 2023)¹ along with Joyce Williams, the founder of Keepers of the Flame^® Foundation, a breast cancer advocacy organization. The article is part of a larger project investigating why breast cancer patients are so infrequently referred to psychotherapy by their physicians.

Twenty-seven patients participated in interviews with Williams, a breast cancer survivor. She and Dr. Counselman-Carpenter identified a number of recurring themes: diagnosis and treatment delays, uncertainty about the vaccine's effect on chemotherapy, difficulties getting to treatment centers while minimizing exposure to COVID-19. Patients also noted their frustration with ongoing isolation, both physical and emotional. "For almost three years, you couldn't bring anyone with you to chemo," said Dr. Counselman-Carpenter. "And when you turned to your doctor with questions, they often couldn't give you answers, which was scary."

Even with the pandemic largely behind us, Dr. Counselman-Carpenter and Williams are intent on strengthening support services for breast cancer patients, from educational resources to psychotherapy referrals. Training healthcare providers to offer individualized support, they believe, is crucial. "Not all patients want the same thing," Dr. Counselman-Carpenter said. "Some women we spoke to wanted asynchronous digital information they could access on their own time. Some wanted one-on-one telehealth. Some wanted in-person support groups. Providers need to understand the nuances of being a person with breast cancer."

Biography

Beth Counselman-Carpenter, PhD '14

Beth Counselman-Carpenter, PhD '14, associate professor in the School of Social Work, focuses her research on post-traumatic growth, decreasing barriers to service provision in social work and medical settings, particularly with the LGBTQIA+ community, and online learning pedagogy. Dr. Counselman-Carpenter co-edited the social work textbook Multidimensional Human Behavior in the Complex Social Environment (Cognella, 2023), which discusses marginalized populations and human development within a geopolitical context.

^{¹Counselman-Carpenter, E., & Williams, J. (2023). "The lived experience of breast cancer patients during the COVID-19 pandemic." Health & Social Work, 48(4), 251-259. doi:10.1093/ hsw/hlad025}