Two University of Arizona Cancer Center researchers have received a grant to spearhead a study to reduce stigma felt by lung cancer patients.
Because of the strong association between smoking and lung cancer, stigma surrounding lung cancer is shaped by the idea that the disease is “self-inflicted,” which can lead to feelings of guilt, self-blame and shame among lung cancer patients, as well as judgment from others.
Heidi Hamann, PhD, UA associate professor of psychology and family and community medicine, and Linda Garland, MD, director of the UA Clinical Lung Cancer Program, will test the effectiveness of a short-term intervention among lung cancer patients who report feeling a high level of stigma. The treatment is designed to help equip recipients with coping tools to overcome the self-blame and guilt associated with stigma surrounding lung cancer.
In the study’s first stage, 10 lung cancer patients will receive the intervention in one-on-one sessions with a therapist. Their feedback will inform the second stage of the study, in which 20 lung cancer patients who receive the treatment will be compared to 20 lung cancer patients who do not. The approach will be evaluated for its association with reductions in stigma, depressive symptoms and anxiety, and increased quality of life. If the treatment appears beneficial it would provide information for a larger study and facilitate implementation at cancer centers to better serve the needs of lung cancer patients.
“A couple of different types of stigma exist. One is perceived stigma — the knowledge that other people may be treating them differently,” said Dr. Hamann.
“Some of our patients’ sense is that they’re looked down upon because they have smoked,” said Jill Mausert, RN, UA Cancer Center thoracic nurse navigator.
“When I was first diagnosed, the first thing out of everyone’s mouth was, ‘Oh, you smoked, didn’t you?’” said Beth, a UA Cancer Center lung cancer patient. “That kind of look, like, ‘You should have known better.’ To make me feel bad makes them feel better.”
The second kind of stigma, said Dr. Hamann, is called “internalized stigma, which is personal guilt. Feeling stigmatized may make patients feel like, ‘I don’t deserve treatment.’”
“It could cause people not to have as strong a will to live or be invested in their treatment,” said Jill Winter, LMSW, UA Cancer Center social worker. “It can feel like a heavy burden, like they’re being punished for what they did. It’s not productive for them to feel that way.”
Dr. Hamann said lung cancer stigma is “associated with poorer quality of life, higher depressive symptoms and impaired patient-provider communication.” Stigma also may add to the burden of illness when patients delay seeing a doctor when symptoms appear, fail to adhere to treatment or end treatment early. In addition, lung cancer patients who feel stigma may feel limited in their social support and reluctant to disclose their diagnosis to others.
“Patients who feel highly stigmatized may not share as much information with their family and friends,” said Dr. Hamann. “Social support is important throughout the whole process of being diagnosed with an illness like cancer.” Patients whose social support is limited might have poorer health outcomes.
“As a medical oncologist for our lung cancer patients, I would like to understand how an undercurrent of stigma surrounding lung cancer may affect their clinical course,” said Dr. Garland. “Does stigma create isolation that may impact how patients seek aid from friends and family and cope with the long-term physical and psychological effects of being a cancer survivor?”
Given the intense focus on behavior and the strong association between smoking and lung cancer, a divide may arise between perceptions of smokers and nonsmokers with lung cancer. Current (and even former) smokers often are thought of as “deserving” cancer and are more likely to experience feelings of guilt, shame and self-blame, while lifelong nonsmokers are often seen as blameless victims.
All lung cancer patients are at risk for stigma, however, regardless of smoking history.
“Nonsmokers know the perception of lung cancer,” said Dr. Hamann. “We interviewed nonsmoker patients who said, ‘When I tell people I have lung cancer I tell them I was not a smoker, because I know they’re going to treat me differently if I don’t say that.’”
Furthermore, perceived stigma could deter them from talking about their diagnosis.
“Maybe they don’t feel guilty, but they still don’t tell people about their cancer because they don’t want to deal with all the questions,” said Dr. Hamann. “Some people decide it’s not worth that burden.”
Drs. Hamann and Garland’s project, “An innovative approach to reduce lung cancer stigma,” is supported by a $100,000 National Cancer Institute Cancer Center Support Grant as part of its Basic/Clinical Partnerships to Promote Translational Research.
About the University of Arizona Cancer Center
The University of Arizona Cancer Center is the only National Cancer Institute-designated Comprehensive Cancer Center headquartered in Arizona. The Center is supported by NCI Cancer Center Support Grant No. CA023074. With primary locations at the University of Arizona in Tucson and at St. Joseph’s Hospital and Medical Center in Phoenix, the Center has more than a dozen research and education offices in Phoenix and throughout the state and 300 physician and scientist members who work together to prevent and cure cancer. For more information: uacc.arizona.edu (Follow us: Facebook | Twitter | YouTube)