Notes from the Field: Evidence-Based and Culturally Appropriate Information Creates Pathways to Allaying the Fears of a Cancer Diagnosis
Program Manager, Global Cancer Prevention & Early Detection
American Cancer Society
It’s now clear that cancer is no longer a disease of the West. Population growth, combined with changes in life expectancy and lifestyles, are driving a staggering 70% percent of cancer deaths to occur in low- and middle-income countries. Many of these countries have made important and meaningful health gains by focusing their efforts on communicable diseases as well as maternal and child health, something the global health community should be celebrating. However, cancer has received little attention, stoking fear and misinformation that can often delay diagnosis until it is too late.
In the United States, doctors, patients, and even the general population tend to be quite familiar with cancer and its treatment. Cancer patients can count on the support of organizations like the American Cancer Society to learn about their diagnosis, treatment options and coping strategies by consulting our library of world-class, evidence-based, and always up-to-date information. But elsewhere around the world, the signs, symptoms and causes of the disease are often misunderstood — even by the medical community — which can delay diagnosis, reduce the chance of successful treatment, and more importantly, set cancer patients and their families on a traumatic journey, riddled with fear, stigma, and uncertainty.
Last year, the American Cancer Society partnered with governments and cancer control organizations in Ethiopia, Kenya, and Uganda as well as with the Johns Hopkins Center for Communication Programs (CCP), to adapt key patient and caregiver education materials used in the United States for these East African audiences. The project team applied the CCP’s tried and tested “P-process”, which fosters the development of health communication messages that originate from a deep and nuanced understanding of local realities and experiences.
In each country, teams organized focus group discussions and in-depth interviews with health care providers, cancer patients, and caregivers. Using this targeted and nimble qualitative research, we confirmed what many of us knew only anecdotally: for example, that many people believe cancer is a punishment for a sin or the result of witchcraft or a curse, or that in some instances, a cancer diagnosis is far more stigmatizing than an HIV diagnosis.
One of the Ethiopian patients explained why she didn’t tell people about her diagnosis: “When people come and ask me what made me sick, I do not tell them it is cancer. I do not tell them because people will abandon me, they think it will ‘stick’ to them.” This example is just one of many significant knowledge gaps, widespread misconceptions, stigma, and lack of community support for patients living with cancer and their families.
Our CCP colleague Cheryl Lettenmaier, Africa regional technical advisor, shared her experience conducting focus groups in Uganda: “More and more people are being diagnosed with cancer and very few people in these countries know anything about it. People are terrified, rumors abound and the way cancer patients are treated is heart wrenching. Because there isn’t enough good information about cancer in these countries, many patients are taken advantage of by opportunists who offer ‘cures’ for large sums of money; ‘cures’ that have no basis in science and do not work. The need for more and better information was clear, so cancer patients can make decisions about what to do about their lives and their treatment, and their families can learn how to help.”
Diverse groups of local stakeholders gathered to reflect on the research findings and identify message priorities and creative strategies to design the adaptations of the original American Cancer Society materials — which were to include booklets for caregivers and patients as well as educational flip charts for health workers to use when talking to patients. What ensued was a real team effort: local communications experts worked on the text and engaged illustrators to adapt design and images, and translators made sure the materials were available in widely-spoken local languages. Finally, the adaptations were pre-tested with their target audiences, and thoroughly reviewed by the American Cancer Society and local medical and Ministry of Health experts.
The results were beautifully illustrated materials that directly counter the misconceptions found in each country. Cancer isn’t contagious, the materials explain, and it’s not caused by witchcraft. A biopsy doesn’t spread the cancer; it helps diagnose it. Radiation therapy doesn’t burn a hole in the body. The materials are now being incorporated into the work of hospitals and cancer organizations offering patient support services, demonstrating their value for partners at the frontline of the cancer epidemic.
Phase two of the project was then launched to make the combined expertise of the American Cancer Society and CCP available to other cancer organizations around the globe. An online toolkit on the K4Health platform now houses the newly-developed materials and includes step-by-step instructions and resources to guide the development of culturally appropriate materials that meet the needs of local populations. The toolkit helps users learn the process for determining what misconceptions are most common in their countries and how to address them. It also provides an image repository and evidence-based core content appropriate for any new patient education booklet, as well as tips for how to adapt the information, so that organizations can feel confident that their new resource is accurate, comprehensive, and tailored to meet local needs.
Starting this summer, the American Cancer Society and CCP are partnering again to create culturally appropriate cancer prevention materials geared toward healthy populations. Pilot projects will be launched later this year in India, Kenya, and Uganda, and an adaptation toolkit for prevention materials will be available online before the end of the year.
There are many aspects of cancer that feel insurmountable at times, but accessing quality information about the disease should not be. The American Cancer Society has been helping cancer patients and their loved ones know what to expect after a diagnosis — and helping them cope — for more than 100 years. We are proud to extend our efforts globally to dispel myths, calm fears, share facts about the disease, and empower people everywhere to make better decisions along their cancer journey. We invite you to explore this resource, use it, and share it widely.
The American Cancer Society’s mission is to save lives, celebrate lives, and lead the fight for a world without cancer. As the nation’s largest private, not-for-profit investor in cancer research, we’re finding cures, continuing the fight for access to quality health care and lifesaving screenings, and ensuring people facing cancer have the help they need. To learn more, call (800) 227–2345 or visit cancer.org.