Jean Sellers, RN, MSN, Clinical Administrative Director, University of North Carolina (UNC) Lineberger Comprehensive Cancer Center, Chapel Hill, and her team use volunteer lay navigators who are trained to be mindful of the cultural barriers to care that exist in their patient population. In her presentation at the Sixth Annual Academy of Oncology Nurse & Patient Navigators (AONN+) Conference in Atlanta, GA, Ms Sellers said, “I use an iceberg to reflect the metaphor for culture, because when you really try to understand the culture of folks, what we see is so small compared to the heart and the soul of what the person is made up of.”
According to Ms Sellers, UNC is the only state-funded cancer center in the state, and serves all patients regardless of their financial situation. The volunteer lay navigation program, which consists of retired nurses and social workers, cancer survivors, and medical students, works to address the barriers of this diverse patient population.
“Culture is not something that you are born with; it’s something that you learn. That can include what’s good, what’s bad, acceptable, unacceptable. It really does determine your core values,” she explained. “Often it’s what we bring to the table to the patient in order to be respectful, and to give them trust so that they can share with us what their fears are. That can very well make the difference between a good outcome and a bad outcome.”
To help navigators understand how to better serve certain patient populations, Ms Sellers provided examples of cultural differences that navigators should consider. For example, Seventh-day Adventists, who tend to get cancer much later in their life, are committed to a plant-based diet, refrain from alcohol and tobacco use, and have 1 day of rest. Conversely, the African American population has more disease, disability, and earlier death than other cultural groups, oftentimes as a result of a lack of access to healthcare.
Asian Pacific Islanders are at high risk for liver and stomach cancers; men who are Asian Pacific Islanders are often decision makers in their families. Chinese patients may feel shame and guilt when trying to understand the diagnosis of cancer, and Vietnamese patients may not readily accept Western mental health counseling. Hispanic patients may view their illness as God’s will, with many preferring home remedies over medical treatment. Amish patients do not accept insurance for hospitalizations; they have a designated leader in their community who is responsible for the funding.
In many cultures, it is more respectful to address the patient by their last name rather than their first name. Ms Sellers recommended addressing patients by their last name, and then asking with which he or she is more comfortable.
Ms Sellers also pointed out that navigators must not assume that all patients have the same understanding of cancer. Citing the International Agency for Research on Cancer’s World Cancer Report 2008, she explained that there are many myths surrounding cancer, and that many people are still uninformed. These myths about cancer exist globally, and are important for navigators to be aware of, because the United States is multicultural and multiethnic, she added.
Ms Sellers reported that in North Carolina, the poverty population and low literacy rates are significantly higher than the national average. As a result, she works with navigators to assess whether patients can read or write.
Patients are often unwilling to admit that they cannot read. Ms Sellers recommends observing patients as they read the educational materials to see if they point to the text, read very slowly, bring the document very close to their eyes, or if their eyes wander over the page. Some patients may claim that they forgot their glasses, or that their eyes are tired. Ms Sellers recommends that, if navigators discover that patients cannot read, they can say, “Let me fill this out for you, and we can go over it together and make sure that you understand what we’re asking.”
“The most important thing to remember here is that culture is neither good nor bad, and it’s so important that we understand it as providers,” she said. “The future of the work that we’re doing as lay navigators is truly born in each of us, in our courage to be able to see all of what we do as good and beautiful, and to acknowledge what is unfair and painful and still choose to love and care. I don’t think any of us would be in this [line of] work if we didn’t believe that.”