Today, LIVESTRONG with implementing partner John Snow Inc. (JSI), is announcing the results of our successful Cancer Anti-Stigma Initiative in South Africa, a first-of-its-kind effort aimed at raising awareness about the disease, improving knowledge about treatment and challenging the stigma that surrounds cancer.
This journey began in 2007, when LIVESTRONG launched an ambitious study to learn how cancer is perceived around the world. We conducted public opinion surveys with more than 4,500 adults from 10 countries on five continents representing more than 3.1 billion people. We analyzed media around the globe, conducted interviews in dozens of languages and documented the global cancer experience. The research revealed there is a pervasive stigma about cancer – not just in a few countries, but everywhere. Based on the findings, we decided to take action by developing the Cancer Anti-Stigma Initiative and chose South Africa as the first pilot nation.
With our implementing partner JSI, we selected three areas of the country to target: Mdantsane (Eastern Cape), Khayelitsha (Western Cape) and Soweto (Gauteng).
Beginning in April 2010, we:
- conducted focus groups and interviews
- empowered survivors to share their stories
- held engaging community events, including concerts, health fairs, fitness contests, and sports tournaments
- collaborated with organizations, government, church leaders and traditional healers
- launched a door-to-door campaign with local volunteers to educate the community
- trained community health workers and media figures
- implemented an SMS-text campaign
- hosted a 9 week radio call-in show
- created TV and radio public service announcements (PSAs) with survivors
Only 18 months later, these efforts produced significant results. We raised awareness about cancer. We empowered an underserved population. We educated communities. We challenged myths, fear, and misinformation. We changed misperceptions.
Some of our results included:
- 9% attended a community event
- 9% had someone talk to them in their home about cancer
- 9% decrease in those who said cancer patients are in “constant pain”
- 21% increase in knowledge of chemotherapy
- 24% saw a PSA about cancer
- 41% heard a radio show or ad about cancer
- 45% of those who had heard cancer messages in the last year responded that they learned something new or did something differently about cancer
At the beginning of the project, many people clung to beliefs that “cancer is a death sentence.” “The cancer patient suffers a lot of isolation.” “Cancer terrifies me.”
But at the end of the intervention, we heard a vastly different story:
“I learned that cancer can be treated.”
“When you love someone, don’t abandon him because of cancer – give him support.”
“I learned to be strong and not feel guilty about the disease I have.”
Changing knowledge and attitudes is a huge undertaking- which public health experts often attempt through interventions lasting many years. Knowing the challenges, we decided to go all in. We listened to the needs of the local community, worked collaboratively to craft a solution, and promoted sustainability so that even when the pilot project concluded, we successfully empowered the community to carry on the work. Our partners on the ground have helped us find a solution to a global problem. Cancer stigma is widely recognized at the international level as a huge barrier to providing quality care for people affected by cancer, but very few organizations are doing something about it. Until now. These results are just the beginning of what could be transformative for the fight against cancer all over the world.
Expanding on our efforts in South Africa, we are continuing our anti-stigma work with JSI in Mexico on the Comparte tu Historia Campaign by collaborating with local organizations and health authorities to develop knowledge and awareness needed to successfully confront fears and misconceptions about cancer. As in South Africa, we are already beginning to see success. Over the next few years, we will take the results of this work in multiple countries and create an adaptable model to reduce cancer stigma that can be replicated globally.