When thinking about the impact of stigma on cancer patients in some parts of the world, Brandon Knettel, Ph.D., recalled the story about a man living in an African country whose brother was diagnosed with prostate cancer.
“He said, ‘Let him die. He caused it,’” said Knettel, a licensed psychologist and an assistant professor of nursing and global health.
The man’s reaction is not unusual in parts of Africa, where there are still wide misconceptions that cancer results from behavior, Knettel explained. “It leads to a lot of mistreatment among family members and others in the community. You have to introduce a different way of looking at cancer, and it’s going to take prolonged engagement with different attitudes.”
Knettel shared the story during a DGHI Think Global event on April 6 titled, “Don’t Tell My Family: Understanding the Impact of Cancer Stigma.” He and two Duke colleagues explained findings from a pair of studies about cancer stigma. One focusing on adult patients and one on children. The studies showed that cancer patients are often isolated from families and community members, which can lead to patients not seeking or delaying cancer treatments.
Some patients won’t do radiation or chemotherapy to avoid losing a limb or hair, says Kristin Schroeder, M.D., an assistant professor in pediatric hematology and oncology. “We’ve had people who had a tumor, but it’s not malignant,” she says. “They’ll celebrate that because having a mass is something they can deal with, but not cancer.”
Schroeder noted that many of the underlying causes of stigma are not unique to Tanzania or cancer and can be seen in other parts of the world and with other diseases. The panelists said more education about diseases and their causes can help, but cautioned that education alone is often not enough to erase stigmatizing attitudes.
Watch the full discussion above, or scroll for highlights.
ABOUT THE SPEAKERS
Kristin Schroeder, MD, MPH, (moderator) specializes in neuro-oncology. Schroeder’s work extends to Moshi at the Bugando Medical Centre as part of the Duke Global Cancer Program. She co-founded the NGO i-ccare to support pediatric cancer care in low resource settings.
Brandon Knettel, Ph.D., has a secondary appointment at DGHI and specializes in global mental health and health behavior. His focus is on care engagement, stigma reduction and mental health support for people living with HIV.
Suhana Posani is a second-year student in the Duke Master of Science in Global Health program. This past summer, she traveled to Mwanza, Tanzania to conduct qualitative interviews with pediatric cancer patients and their caregivers about cancer stigma they experienced from their communities.
Discussing the types of cancer stigma found in their research
“Some of the items we discussed were beliefs cancer was a curse or punishment from God or the ancestors. People were hesitant to say if they experienced stigma, but if we asked open-ended [questions], they talked about how people were mistreated, alienated and social isolation. The cohort wasn’t willing to talk personally about what they experienced, but it was robust when you depersonalized it.”
“[In my study,] we had different age groups. The 18-plus group said they didn’t tell anyone after they were cured. They only told their parents or caregivers. They said they didn’t attend certain events or class because they were afraid what people would say to them or see the effects of the treatment like hair loss, injuries etc. And [even] younger patients didn’t want to go to school and get teased about that, and parents echoed the same.”
“There’s this perception that kids can’t get cancer because the discussion and topic is about adult cancer. So, if a child gets cancer, they must be bewitched … which drives more of this stigma of, “Don’t bring the child in, don’t get treatment for them. Your family did something wrong to have a child with something like this.” So, the family won’t seek a diagnosis.”
Possible interventions to reduce stigma
“Stigma is notoriously difficult to intervene [with] because these cultural attitudes are very embedded. With our study, we did find you can change knowledge with an educational intervention and help people be more knowledgeable about the causes of cancer; that’s been successful in the states. The cultural tendency when someone has cancer is to come in, provide support, care and hope. I think we haven’t done nearly enough to incorporate that into other health systems as we expand cancer care internationally.”
“One intervention I found was in South America. A researcher developed a school play about cancer. Maybe, the next intervention could be a school play to help lessen the stigma that adults are seeing through the education of children.”
The need to collaborate with traditional healers
“Amongst our patients, the vast majority went to a traditional healer or a community health worker [before] they came to the health system. So many times, we dismiss this entire group as part of the health profession. They have different training and recognizing them as part of the health systems we’re working in is key. It’s important they know the first signs of cancer, the challenges and delays so they can be better educated.”
“That openness, willingness and acceptance of traditional healers as part of the health system is fairly new. We’re fighting against a lot of history of this colonialist tendency to villainize and exclude traditional healers from the health system. It’s about breaking down that tension between traditional healers and the formal health system. It will take some time, but there is a lot of potential there as that becomes more of an option.”
The role of faith leaders
“When asked how they dealt with their cancer diagnosis and symptoms, they turned to faith. I think that would be a good way to develop an intervention through their religious leaders.”
“Those are the groups that need to have knowledge about cancer when they’re counseling families and patients so they don’t say, ‘There’s no treatment for you’ or just ‘We will pray.’ If we’re able to give them other opportunities such as counseling and education about it, there are ways we can influence those discussions. It’s a good place to start.”
“And I’d liked to talk to hospital administrators about whether there’s support to do this and with the government more broadly. There’s a lot of other groups and folks that we need to have at the table as we talk about solutions.”