Awareness is a crucial weapon in the battle against chronic diseases, but an equally important approach is that of empowerment. While learning about healthy lifestyles works towards the prevention of many heart and lung diseases, patient empowerment projects fight the stigmas society places on illnesses. Guided by popular misconceptions cultivating fear and embarrassment, many people miss an early and potentially life-saving diagnosis. According to the Livestrong Foundation, a non-profit cancer support organization, 41 percent of people interviewed for a study stated that they avoided screenings for fear of a negative result. Those who do come out and are diagnosed stand the chance of being ostracized by the community, labelled permanently as a defective human, or worse. If being aware of a disease is important, not being ashamed of having a condition is equally life-saving.
In 2010, the Livestrong Foundation embarked on a research project to assess global perceptions of cancer. Their study, conducted in 10 countries - both developed and developing countries - was based on the premise that cancer is no longer just a first-world problem. Although the risk of getting cancer is almost twice as high in more affluent countries, according to the study, the threat is rising in developing nations. According to Livestrong, 50 percent of new cancer cases, and two-thirds of all cancer-related deaths, occur in the developing world. Infrastructure exists in these places, and many projects are underway to improve healthcare in the most affected regions. However, no study had previously been done on perceptions of the already-affected, and how misconceptions about cancer can ill-advise the decisions of otherwise well-informed, healthy people.
Data from the study shows a world that understands cancer is a problem: people know that cancer can be treated (77 percent responded positively); patients have a high survival rate (70 percent); cancer is not self-inflicted (59 percent); and that it is not contagious (75 percent). However, only 42 percent knew how to prevent cancer, 41 percent what services are available once diagnosed, and only 57 percent (or 3 out of every 5 people) felt they could speak freely about it - as the topic is still taboo in some circles. The study concluded that while many people are aware of cancer, they often don’t know many specific facts about it. This can lead to the misconception that cancer patients are incurable, or written off for dead, and has even caused people to forgo medical intervention at the fear of being diagnosed - or worse yet - blacklisted by society.
A presentation of Claire Neal and her team at the Livestrong Foundation at the upcoming 2012 Geneva Health Forum (April 18-20, 2012) shows how data from the 2010 study is now being used towards empowerment projects in South Africa. In association with John Snow, Inc., a for-profit health research and consulting firm, they embarked on an awareness campaign aimed at educating people on the true facts about cancer. Over a period of 18 months they conducted training programs for local health workers and media presenters, produced and aired various TV and radio public service announcements, and ran an SMS campaign (text messages have been shown to have a larger reach and more receptive audience than traditional media outlets, in part due to their cost, availability, and confidentiality). Metrics show a high audience retention rate of the information, and the approach has been successful in removing some of the stigma associated with cancer.
In a rapidly changing global environment, we must think beyond the perception that there is such a thing as a rich man’s illness. Projects such as the Livestrong study and the resulting front-line activities show that efforts in educating people on diseases and disease carriers, are just as important as developing the means to fight them.
(Photo © Livestrong Foundation)
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