ROUGHLY A QUARTER OF THE PEOPLE caring for loved ones with cancer in the U.S. are young adults. Most of these caregivers use social media, where they report encountering frequent misinformation about cancer. A study published in the April 15, 2021, issue of Cancer finds that this can be a source of stress for some caregivers, leading them to avoid using social media to post about their loved one’s cancer.
Most caregivers helping people with cancer are over age 50, but young adults are increasingly taking on caregiving roles, says Echo Warner, an author of the study and a postdoctoral research associate at the University of Arizona Cancer Center and College of Nursing in Tucson who specializes in cancer survivorship. In the U.S., an estimated 1.5 million young adults 18 to 39 are caregivers for loved ones with cancer, she says. “But we don’t really see a lot of services available for young adults who are taking care of cancer patients,” she explains. Warner says that social media might provide support that young caregivers can’t always find locally.
Researchers are still defining what constitutes “misinformation” in the context of online communication and health care, especially in oncology. A study published in the April 15, 2021, issue of Cancer described misinformation as including “false, inaccurate or incomplete information; rumors; ineffective alternative therapies; discourse promoting skepticism about medical guidelines; and misleading or untrue health-related advice.”
In her study, Warner focused on 34 young caregivers and their experiences with cancer misinformation on social media. Nearly two-thirds encountered some form of misinformation. Caregivers with a large following on platforms such as Facebook and Instagram said they were approached by small businesses and individuals with requests to promote unproven therapies and remedies on their accounts, Warner says.
But the most common scenario involved interactions in which the caregiver would post a question or comment about the cancer patient on their Facebook or Instagram feed, and friends and family members would offer inaccurate or questionable advice in response. Warner says caregivers often talked in their interviews about misinformation that took the form of conspiracy theories, because those were the most outlandish and surprising claims they came across. “A lot of the misinformation tended to be nutrition-related, or things that the patient could eat or ingest that would help with curing and treating or managing the side effects of the cancer,” she adds.
Warner says she expected caregivers to simply disregard the misinformation, especially the most outlandish claims. Yet she found that these posts shook caregivers’ confidence and made them doubt their decisions, particularly when comments came from family members or close friends.
Caregivers can be tired and stressed, which may make them vulnerable to misinformation, suggests Brian Southwell, a social science researcher who studies misinformation at RTI International, a nonprofit research institute in Durham, North Carolina. Southwell was not involved in the study. Previous research shows that “all human beings are vulnerable to believing misinformation sometimes,” he says. “Caregivers want to keep their families healthy and will draw on credible information when it is available to them, so building trusted relationships between health care organizations and caregivers is a vital step.”
Oncologists sometimes instruct patients and caregivers not to seek cancer information online so that they avoid harmful advice or descriptions of worst-case scenarios for their loved one. While Warner understands that oncologists make these recommendations because they want to protect patients from misinformation, she says she wishes it were easier for oncologists and oncology care teams to guide patients and caregivers toward high-quality online cancer information. “People are going to use the internet,” she says. “The big takeaway is that there needs to be a shift in the way we talk to patients and families about seeking information.” Warner encourages caregivers to advocate for themselves by asking their health care teams for guidance about reliable websites and experts, noting that researchers, clinicians and hospital systems can all play a role in making information more accessible, both in-person and online. “The best practice,” she says, “is to get accurate information in front of people first, before they’re exposed to misinformation.”
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