Contamination, suffering and womanhood: Lay explanations of breast cancer in Central Vietnam
Introduction
Cancer has become a leading cause of death in Vietnam with 164,671 new cases and 114,871 deaths (0.12% of the total population) linked to cancer in 2018. Approximately 15,229 cases of breast cancer were newly diagnosed in the same year, causing 6103 deaths, making it the most frequent cancer among Vietnamese women (GLOBOCAN, 2019). As revealed by the most recent scoping review undertaken by Jenkins and his colleagues (2018), the majority of research on breast cancer in Vietnam since the early 2000s has been biomedically focussed. There is limited scholarship from social science perspectives exploring women's perceptions and behaviours with regard to breast cancer, or how social forces shape the lived experiences of the illness (Jenkins et al., 2018).
To respond to the need for better understanding of breast cancer in Vietnam, in this article we provide insights into how aetiological perceptions are mediated within the intersection of biomedical and epidemiological explanations and social experiences. Examining what Davison et al. (1991) term “lay epidemiology”— the process through which health risks are understood and interpreted by laypeople — contributes insights into the ongoing social-structural circumstances which shape the way patients and their families make sense of their illnesses. Our study draws attention to the broader contexts that ordinary people blame for causing their illnesses and contributes to the growing body of literature suggesting that the notion of risk has come to express social and political concerns (Nelkin, 2003; Petryna, 2013). In non-experts' search for causation, a cancer risk is always shaped by specific environments and only made meaningful through long-standing popular and contemporary ideas about embodied vulnerability to exogenous influences (Gibbon, 2018). Biomedical concepts alone do not suffice in explaining why a particular person experiences cancer. In our study, popular accounts do not exclude prominent biomedical understandings regarding cancer risk factors. Nevertheless, laypeople reinterpret and reconstruct their understandings by locating such knowledge in a framework that is meaningful to their life circumstances. Our findings challenge the assumptions that view risk merely in objective terms by revealing how understandings of cancer causation in Vietnam are mediated through particular historical social contexts of warfare, a transitional market economy, poverty, and cultural configurations of gender roles.
The search for what causes an illness may be seen as an attempt to bring order to a disordered situation, providing a meaning to traumatic events and maintaining a sense of meaningfulness (Das, 1995; Harris, 1989). A cancer diagnosis triggers an “existential plight” for persons with cancer, leading them to look for “meaning in life” by seeking to understand why they have cancer (Kernan and Lepore, 2009:1176) and through this process to establish a credible aetiology, people also seek to “re-establish agency” (Manderson et al., 2005:324).
Our review of literature finds that most studies adopting social science perspectives on lay aetiologies of cancer have emerged from non-Western developing countries in the last two decades. In those studies, lay explanations of cancer causality are often combined with epidemiologically established risk factors, and the two are not mutually exclusive. Factors identified by scientific evidence such as heredity or genetics, exposure to environmental pollution or radiation, as well as consumption of food that contains carcinogenic chemicals are pervasive in lay explanatory models across various settings from Asia to Africa (Dumalaon-Canaria et al., 2014; Manderson, 2011). Lifestyle risk factors such as smoking or alcohol drinking are also incorporated in lay aetiologies of cancer but often in a dissimilar way to Western societies which often place the blame on individuals for their risky behaviours. For instance, in her research in rural China, Lora-Wainwright (2013) finds that Chinese families employ aetiologies such as smoking and drinking in explaining cancer. However, these families do not blame the sufferers for engaging in smoking or drinking because these behaviours constitute masculinity and are important to social life – they are parts of normalized habits (2013:27).
Embedded in lay explanations of cancer are people's interpretations of biomedical views in individually meaningful terms. For example, women in Southern Mexico understand cancer as partly caused by excessive parity combined with a lack of practical support, rather than focus on its physiological consequences (Hunt, 1998). Similarly, Martínez (2018) notes that patients' explanatory models of cervical cancer in Venezuela are drawn on biomedical risks such as sexually transmitted diseases, but frame these within their own life experiences, such as the male partner's role in the risk aetiology.
Among recent scholarship on breast cancer aetiologies, a study in Southern Thailand by Liamputtong and Suwankhong (2016) demonstrates that while some laypeople invoke biomedical risk factors such as genetic inheritance or hazardous food to explain their illnesses, Buddhism greatly influences understanding of causation among most women. In their worldview, bad karma, accumulated through acts such as a past abortion, is considered the underlying cause of breast cancer. Similar beliefs linking cancer with one's previous actions are present among Indian and Iranian women who attribute its occurrence as a form of punishment for sins (Howard et al., 2007). Meanwhile in China, breast cancer is believed to result from a woman's fate or bad luck (Simpson, 2005). The aetiological association between negative emotions such as stress and cancer is often found in research eliciting lay epidemiology. For example, Nelson's study (2017) shows that stress emanating from unmanageable demands of a modern life is a widespread causal belief among South Korean women and through this aetiology, they consider breast cancer a sign of prosperity gone wrong.
These studies in different settings prompt us to form our research question on how laypeople construct their causal perceptions of a pressing health issue in a distinct Vietnamese context. As Dorothy Nelkin (2003:viii) observes, “people perceive risks through different ‘frames’ that reflect their values, world views, and concepts of social order. These frames can influence definitions of risk, allocations of responsibility and blame, evaluations of scientific evidence, and ideas about appropriate decision-making authority.” We build our analysis on her conceptualization to reflect on the varying “frames” that patients and their families rely on to assemble their explanations in response to the question of “what causes breast cancer?”
Section snippets
Methods
The data presented in this paper is drawn from an ethnographic study of lived experiences of breast cancer in Central Vietnam undertaken from April to December 2019. The study was conducted in the province of Thừa Thiên-Huế which is located in the Central region with the population of approximately 1,149,800 in 2016 (General Statistics Office of Vietnam, 2016). The Central region comprises 14 provinces stretching from the Northern Central zone (where the 17th Parallel - the boundary that
Findings
In the Vietnamese language cancer is translated as “ung thư,” (breast cancer is “ung thư vú” where “vú” means breast) and a malignant lump is called “u ác,” as opposed to “u lành” (benign lump). Both adjectives “lành” (malignant) and “ác” (benign) are often used to describe the characteristics of a human or an animal – a movable subject with thoughts and emotions — reflecting an understanding of cancer as having an agentive nature acting upon the body. Our informants could refer to a
Discussion
Our paper has focused on the wider social, political and historical circumstances through which laypeople frame the sources of their pathology. Lay understandings, biomedical knowledge and cultural specificities together constitute what cancer “is” in any given setting (Broom et al., 2018:49). As we have illustrated, lay understandings such as those related to karma or fate as described in the existing literature on illnesses in Vietnam (Gammeltoft, 2014; Vu et al., 2014) are less prevalent.
Conclusion
Our study has some limitations, specifically regarding our recruitment. Firstly, we excluded those who had just received their initial cancer diagnosis or were in palliative care due to the concern they may be in psychological distress. Further, as our recruitment was mainly hospital-based, we could not explore the views of patients who had refused medical treatment. Their perceptions of aetiologies might be vastly different from those of the informants we have demonstrated. Despite this, our
Author contributions
Both TD and AW participated in the conception and design of the larger study and this article. TD conducted the data collection, including observation, interviews, focus groups, as well as logistic arrangements. AW provided supervision throughout the whole research. TD transcribed all recorded materials with the help of two other research assistants. Both TD and AW participated in analysing the data,drafting and reviewing the paper, and approved the final version to be published.
Funding
The study is conducted within the first author’s Ph.D program at Monash University for which she received Monash Graduate Scholarship and Monash International Tuition Scholarship.
Acknowledgement
The authors would like to extend our most sincere thanks to the staff at the Center for Clinical Research, National Oncology Hospital (Hanoi), Oncology Center at Hue Central Hospital, Associate Professor Hồ Thị Hiền (Hanoi University of Public Health) and Dr. Lynne Lohfeld (Queen's University Belfast) for their critical contributions to the design of the study and organization of fieldwork in Vietnam. Most of all, we thank members of the Club of Courageous Women, particularly “Đội Áo Hồng,” and
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