Svetlana Ristovski-Slijepcevic

Cancer Survivorship: Why Labels Matter

Until relatively recently, the prevailing view was that a diagnosis of cancer was effectively a death sentence. However, the last 30 years have witnessed the transformation of cancer from a largely fatal disease to one in which a majority of those diagnosed receive treatments that result in long-term disease-free survivorship. This improvement in survival rates has been accompanied by a shift from talk of cancer victims to cancer survivors. The concept of cancer survivorship has been widely debated over the past few decades. In biomedical usage, the term survivor has a distinct clinical meaning, referring to individuals who have had a life-threatening disease but have remained disease free for a minimum of 5 years. However, in recent years, a variety of other definitions have been outlined. Proposed definitions differ primarily around the scope of populations covered; some refer only to those diagnosed with cancer, whereas others extend to family, friends, and caregivers. Complicating the picture is the distinction drawn between the terms cancer survivor and cancer survivorship. Although the former is used to encapsulate individuals throughout the cancer trajectory, the latter refers to a distinct phase in the cancer trajectory between primary treatment and cancer recurrence or end of life. Although each definition is an attempt to fully describe those who have been affected by cancer, their differences have contributed to ongoing confusion about who should be called a cancer survivor. Referring to the lack of consensus on how the cancer survivor is defined, Khan et al ask, “Does it really matter—is this debate trivial?” Continuing this discussion, we expand on the context in which the concept of the cancer survivor has developed, arguing that beneath what might seem like a trivial definitional debate lurks a more complicated concept structured by larger historical, social, cultural, and political forces. Most historical overviews of the concept of the cancer survivor generally attribute the first usage of the term to Fitzhugh Mullan, who argued against the dominant view that there are two different paths for people diagnosed with cancer: a path for those who are cured, and a separate path for those who are not. In his view, there was one path for people diagnosed with cancer: that of survival, dominated by dealing with the physical and psychological effects of diagnosis and treatment. He divided survival into three distinct seasons: acute survival, the period after diagnosis, when energies are focused on surviving treatment itself; extended survival, the period after completion of treatment, when the survivor’s energies are focused on dealing with the physical and psychological consequences of treatment; and permanent survival, the period when recurrence seems increasingly unlikely, although the survivor is continuing to deal with the long-term effects of treatment. Mullan’s dual status as a cancer survivor and a physician likely played no small role in the legitimacy accorded to the concept and the momentum his commentary generated for the nascent cancer survivor movement. The concept of the cancer survivor soon captured the imagination of those affected by and working in the field of cancer by drawing attention to the ongoing issues people with a history of cancer face after they have been successfully treated, many of which stem from the iatrogenic consequences of treatment itself. It also articulated the reality that people with a history of cancer do not just rejoin the land of the well when they are deemed cancer free. Rather, they live in the ambiguous space between the well and sick. In 1986, Mullan, along with representatives from 20 organizations, founded the National Coalition for Cancer Survivorship, a survivor-led advocacy organization seeking to change the focus from cancer victim to survivor. The National Coalition for Cancer Survivorship argued that “from the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor.” Founded in 1996, the Office of Cancer Survivorship of the National Cancer Institute has retained the spirit of this definition while expanding it to suggest that “family members, friends, and care-givers are also impacted by the survivorship experience and are therefore included in this definition.” However, the Office of Cancer Survivorship also emphasizes the distinction between the concept of the cancer survivor and the cancer survivorship phase, choosing to focus its activities on the latter because of its relative neglect in advocacy, education, clinical practice, and research. These various definitions demonstrate that the concepts of the cancer survivor and cancer survivorship are far from neutral. They are not just attempts to describe something but to do something: to mobilize patients, oncologists, researchers, and all others affected by or invested in the experience of cancer. Although these developments are central to understanding debates about the term cancer survivor today, to fully understand the concept, we need to go back further in time, because the term survivor itself has been around for centuries—although its connotations have shifted over time. The oldest references appeared in the late 16th century and referred to a survivor in relation to the death of another/ others. For example, in 1594, Shakespeare made reference to “thy surviving husband” in his poem “The Rape of Lucrece,” reflecting its legal usage at the time, whereby the survivor of someone gained the rights/inheritance of the deceased. JOURNAL OF CLINICAL ONCOLOGY COMMENTS AND CONTROVERSIES VOLUME 31 NUMBER 4 FEBRUARY 1 2013

Being a ‘good mother’: Dietary governmentality in the family food practices of three ethnocultural groups in Canada

In this qualitative study with three ethnocultural groups in two regions of Canada, we explore how official dietary guidelines provide particular standards concerning ‘healthy eating’ that marginalize other understandings of the relationship between food and health. In families where parents and youth held shared ways of understanding healthy eating, the role of ‘good mother’ was constructed so as to include healthy eating expertise. Mothers expressed a perceived need to be personally responsible for providing skills and knowledge about healthy eating as well as guarding children against negative nutritional influences. Governing of family eating practices to conform to official nutritional advice occurred through information provision, monitoring in shopping and meal preparation, restricting and guiding food purchases, and directly translating expert knowledges into family food practices. In families where parents and youth held differing understandings of healthy eating, primarily families from ethnocultural minority groups, mothers often did not employ the particular western-originating strategies of conveying healthy eating information, or mentoring healthy meal preparation, nor did they regulate or restrict children’s food consumption. Western dietary guidelines entered into the family primarily through the youth, emphasizing the nutritional properties of food, often devaluing ‘traditional’ knowledge about healthy eating. These processes exemplify techniques of governmentality which simultaneously exercise control over people’s behaviour through normalizing some family food practices and marginalizing others.

People Are Just Becoming More Conscious of How Everything's Connected': 'Ethical' Food Consumption in Two Regions of Canada

In this qualitative study with three ethnocultural groups in two regions of Canada, we explore the ways reflexivity and tradition may help explain regional differences concerning ‘ethical consumption’ in relation to food. We argue that ‘reflexive modernity’ cannot be said to apply unambiguously in contemporary Canada. The food concerns of Punjabi British Columbian and African Nova Scotian participants centred more on cultural traditions than on ethical consumption. While European Canadians in British Columbia (BC) and Nova Scotia (NS) appear similar on the surface, British Columbians expressed strong commitment to discourses of ethical consumption, while those in Nova Scotia displayed almost no engagement with those discourses. In contrast, tradition was a more prominent concern in food decision-making. Availability of resources for ethical consumption both shaped and was shaped by local discourses. Differing relationships to community may contribute to reflexive ethical consumption.

Being ‘thick’ indicates you are eating, you are healthy and you have an attractive body shape: Perspectives on fatness and food choice amongst Black and White men and women in Canada

Abstract Despite recent critiques of contemporary obesity discourses that link ‘modern Western lifestyles’ to an ‘obesity epidemic’, the population’s weight remains a central concern of current dietary guidelines. Food choices that are considered beneficial to maintaining a certain weight are understood to play a key role in one’s health. This concern reflects medico-moral assumptions about the properties of food and what people should eat. However, the impact of obesity discourses on different individuals and social groups is rarely considered, although there is some evidence that people do generate, reflect and resist the norms and standards set for them, including those that relate to food/weight. In this paper, we will examine the perspectives on fatness and food choice amongst Black and White women and men living in Vancouver and Halifax, Canada. With this examination, we will challenge conventional assumptions about the singular ‘modern Western lifestyle’ that leads to obesity concerns by teasing out some of the social, cultural and political contexts within which people conceptualise issues regarding weight and make their food choices. By examining the experiences of both women and men we will also provide important insights into the gendered ways in which people engage with obesity discourses and the injunction to ‘eat healthily’ as a form of weight management.

Metastatic Cancer and Mothering: Being a Mother in the Face of a Contracted Future

For the majority of people diagnosed with metastatic cancer, there is little hope of a disease-free future. Drawing on ethnographic fieldwork at a support group for women with metastatic cancer, we examine the relationship between metastases and mothering. We argue that the experience of raising children while living with a terminal illness crystallizes cultural expectations about mothering based on an essentialist model of parenthood whereby the person best suited to raise children is their biological mother. These expectations create an irresolvable gap between discourse and experience that both increases the suffering of women raising children and generates an internal hierarchy of suffering among women with cancer metastases that hinges on the distinction between those who have dependent children and those who do not.

Meanings of Food, Eating and Health in Punjabi Families Living in Vancouver, Canada.

Objective: South Asians living in western countries have increased risk for developing diet-related chronic disease compared to Caucasians of European heritage. To increase understanding of social and cultural factors associated with their food habits, this study examined the meanings of food, health and well-being embedded in the food practices of families of Punjabi heritage living in Metro Vancouver, Canada. Design: Qualitative research design. Setting: Metro Vancouver, British Columbia, Canada. Method: Data collection included individual interviews with 39 members of 12 families of Punjabi Sikh origin (ages 13 to 70 years) and participant observation of a grocery shopping trip and family meal. Themes were generated through constant comparative analysis of transcripts to describe, organize and interpret influences on participants’ food decision-making in families. Findings: Participants’ descriptions of their eating habits were characterized by contrasts between elders’ reliance on traditional Indian foods and young people’s desire for their diets to include at least some ‘western’ food. Participants articulated two different understandings of how food habits affect physical health: a scientific approach that related specific food components (eg, fat, cholesterol, vitamins) to risk of chronic disease, and a view based on centuries of traditional knowledge about food. Food choice was also shaped by concerns for the psychosocial well-being of individual family members, exemplified by women’s attention to food preferences of individuals in the family. Conclusion: These findings add to understanding of the varied ways food practices are implicated in constructing ethnic identities, and provide insight into cultural influences on health behaviours.

Ways of knowing about healthy eating in three ethnocultural groups in Canada

Decisions about ‘healthy eating’ are the result of complex processes which involve diverse ways of drawing on, perceiving and understanding discourses about food, diet and health. Although we are increasingly aware of diverse views of the role of food in health and well being, there is paucity of knowledge about how people pull together discourses of healthy eating. How do people obtain and conceptualize various pieces of information about food and well-being? What influences the acceptance or rejection of a particular healthy eating discourse? We have begun to address these questions in research exploring peoples ‘ways of knowing’ about healthy eating. Participants discuss experiences, interpretations and reasoning used in learning and deciding what to believe and/or reject about healthy eating. Participants came from families of three different ethnocultural groups in Canada: African Nova Scotians, Punjabi British Columbians and European Canadians. Through in-depth, individual interviews with teenagers and adults from these groups, we were able to consider both between and within group differences in how people come to understand what healthy eating means to them. Understanding the various ways people conceptualize, trust or reject healthy eating discourses will provide direction for developing more relevant and sensitive responses regarding diet and health related decision-making of individuals and families.

Food-related health concerns of Punjabi British Columbians: postcolonial perspectives on nutrition and health education

Food consumption and food-related practices serve many purposes in human life. From a cultural perspective, food practices are involved in creating a sense of community, belonging, and common experiences and needs. Food practices, in terms of cooking and eating, are an aspect of culture that can be carried over during migration from the country of origin to the host country. This is, however, usually countered with some degree of acculturation. A current public health concern in North America is that immigrants’ dietary acculturation may lead to a decrease in the healthfulness of their food choices and therefore increase their risk for certain diet-related diseases. The decreased healthfulness is suggested to be a result of adopting unhealthy North American food patterns, and/or preserving or amplifying unhealthy aspects of traditional food patterns. One group experiencing this phenomenon is the South Asian immigrant population, which is believed to have a higher risk for developing cardiovascular disease and type 2 diabetes than does the general population in North American or the general population in India. In this study, we explored the food-related health concerns of Punjabi British Columbians, a sizeable population living in British Columbia, Canada. Through semi-structured interviews with teenagers and adults, we examined the multiple discourses evident in their comments about food and health concerns, finding complex intermingling of traditional South Asian and contemporary medicalized North American discourses. These findings are interpreted through a postcolonial theoretical lens to raise questions regarding health promotion and nutrition education practices.