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

到2020年，包括癌症在内的非传染性疾病将导致低收入和中等收入国家近70%的死亡。在全球范围内，乳腺癌(BC)是女性的主要癌症，2015年导致571,000人死亡。乳腺癌在LMICs中尤其令人担忧，因为这种疾病的死亡比工业化国家要频繁得多。这通常是因为当女性来诊断时，疾病已经发展到了晚期。为了解决这一问题，世界卫生组织咨询了国际专家，并为各国政府制定了一套指导方针。没有多少资源的国家应该至少包括文化上适当的乳房健康公共教育，解释为什么通过乳房自我检查早期发现很重要，以及通过临床乳房检查(CBE)进行快速诊断。研究表明，这背后有许多社会和文化原因，比如恐惧、宿命论、对无法用现代医学治愈的精神或超自然疾病的信仰、对毁容的担忧，或者家庭和工作职责的竞争。研究表明，关于健康的直截了当的信息不能解决这些根本问题，因此很难促进人们的健康行为。两种不同的方法似乎为健康行为的改变创造了更多的机会。他们都使用叙事或讲故事，但方式截然不同。一种方法是与艺术家合作创建信息娱乐(教育+娱乐)材料，将人们吸引到一个故事中，在那里他们可以体验情况或认同人物。电视或广播上的肥皂剧就是一个例子。其他的例子有突出舞蹈或音乐的现场艺术表演，讲故事的纺织品，或诗歌和歌曲。没有处方来确定哪种沟通渠道效果最好，这就是为什么像我们这样的研究小组将其作为有用的研究重点。另一种方法更多地是基于研究，从焦点小组开始，与患有特定健康问题的人交谈，并确定小组中非常能言善辩的演讲者。然后，他们被单独拍摄下来，讲述他们的经历，并在他们的故事结束时传达公共卫生信息。这种方法是在美国和越南开发并用于控制高血压的，高血压是心脏病的一个危险因素。这些研究人员向一些人展示了这些基于故事的DVD，而另一些人只看到了医疗信息。与另一组相比，看到患者故事的人中，更多的人通过更好的饮食、更多的锻炼或药物来控制自己的高血压。我们不知道这将如何应对不同的健康问题(乳腺癌)和不同的目标行为(及早诊断)。我们的目标是创建一个由来自越南和英国的人员组成的跨学科合作小组来开展这项工作，确定LMIC中关于乳腺癌控制的已知情况，收集有关专家和越南大众媒体对乳腺癌的看法的新信息，并研究越南当地对乳腺癌预防和诊断的信念和经验。我们将利用这些信息为当地量身定做的、以艺术和叙事为主导的信息娱乐活动开发材料，并为与文化相关的患者讲故事的方法。我们的下一步将是测试这些方法在多大程度上可以减少女性怀疑自己患有乳腺癌而寻求诊断所需的时间。这一伙伴关系的潜在应用和好处是：增加知识和研究能力，为这一群体和其他人创造机会，学习如何建立公平的研究-行动伙伴关系，并了解艺术+人文+健康科学如何努力开发能够拯救生命的材料，

SUMMARYNon-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,