Documenting how the arts and storytelling can save lives: The Viet Nam Breast Cancer project

SUMMARY

Non-communicable diseases (NCDs), including cancer, will cause nearly 70% of all deaths in low- and middle-income countries (LMICs) by 2020. Globally breast cancer (BC) is the leading cancer in women, responsible for 571,000 deaths in 2015. Breast cancer is of particular concern in LMICs because death from this disease occurs much more frequently than in industrialized nations. Often this is because the disease is already advanced when a woman comes in for a diagnosis.

To address this problem the World Health Organisation consulted international experts and developed a set of guidelines for national governments. Countries with few resources should include, at the very least, culturally appropriate public education on breast health that explains why early detection through breast self-exam is important, along with quick diagnosis with clinical breast exams (CBE).

Studies show there are many social and cultural reasons behind this, such as fear, fatalism, a belief in a spiritual or supernatural case that cannot be cured with modern medicine, concern over disfigurement, or competing family and work duties. Research shows that straightforward messages about health do not address these underlying issues and so it is difficult to promote healthier behaviours in people.

Two different approaches seem to create more chances for healthy behaviour change. They both use narrative or storytelling but in very different ways. One method is to work with artists to create informatoin-edutainment (education + entertainment) material that draws people into a story where they can experience the situation or identify with the characters. Examples are soap operas on TV or the radio. Other examples are live arts performances that highlight dance or music, textiles that tell a story, or poetry and song. There is no prescription to identify what communication channel will work best, which is why research groups such as ours have targeted this as a useful focus for study.

Another approach is more research-based, starting with focus groups to talk with people who live with a particular health problem and identify very eloquent speakers in the group. Then they are individually videotaped telling their experiences, with a public health message at the end of their story. This approach was developed and used to control high blood pressure, which is a risk factor for heart disease, in the U.S. and Viet Nam. Those researchers showed some people these story-based DVDs and others saw just medical information. More of the people who saw the patient stories controlled their hypertension through better diet, more exercise or medication than the other group. We don't know how this will work with a different health problem (breast cancer) and different target behaviour (get diagnosed early).

Our aims are to create an interdisciplinary collaborative group of people from Viet Nam and the UK to carry out the work, identify what is already known about breast cancer control in LMICs, gather new information on what experts and the Vietnamese mass media say about breast cancer, and study local beliefs and experiences on breast cancer prevention and diagnosis in Viet Nam. We will use that information to develop material for a locally tailored, arts- and narrative-led information-edutainment campaign plus for a culturally relevant patient storytelling approach. Our next step would be to test how well these approaches can reduce the amount of time it takes for women suspecting they have breast cancer to seek a diagnosis.

The potential applications and benefits of this Partnership are: to increase knowledge and research capacity, create opportunities for this group and others to learn how to create equitable research-to-action partnerships, and learn how the arts + humanities + health sciences work to develop material that can save lives,

Healthy women produce healthy families and communities. The control of NCDs, including cancer, is clearly linked to economic well-being through inclusion in the UN Sustainable Development Goals (SDG #3). Given the influence that women have on their families, communities and workplaces, efforts to better understand and overcome barriers to good breast health (including knowing the sign of disease and quickly seeking a diagnosis when in doubt) can positively affect both current and future generations' economic, emotional and physical wellbeing. By focusing our attention on the health needs of at-risk women, particularly those who are living in low-resource isolated communities, we will bring the power of arts-driven, culturally relevant interventions that can save lives by reducing breast cancer.

Using arts and humanities-based approaches to healthcare problems is an emerging field. We will draw on these disciplines to identify and inform this important public health issue. This has great potential to impact how future public health research and education are undertaken, particularly in LMICs where awareness of the impact that NCDs like breast cancer is just emerging.

Using narrative and artistic means to draw public attention to the signs and symptoms of breast cancer, teaching people that a diagnosis of breast cancer is not an automatic death sentence, and the beneficial effects of early diagnosis can outweigh fears or concerns over the future may influence how individuals, families and communities choose to respond to the news that a woman has been diagnosed with breast cancer.