Juanne N. Clarke

The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome.

Chronic fatigue syndrome (CFS) is a relatively new disease that is difficult to diagnose. It is also a contested disease immersed in dispute about whether it is a physical or psychiatric reality. Sufferers often claim to experience not only the physical challenges of the disease, and these can be extensive, but also, initially, the anomie of suffering from a condition whose very reality is debated both in the medical and in the wider communities. Theories of self in illness emphasize how people who are diagnosed as chronically ill work hard as they seek to maintain previous, or to develop supernormal, selves. Such goals are cast in a critical light by Foucaults notion of the technologies of self in the context of circulating neo-liberal discourses. As people with CFS, lacking an uncontested medical diagnosis, search for meaningful self-identities, they resist previously available discourses to take up an alternative discourse, one that we call radicalized selves. This paper raises questions about the constraints and liberties, power and powerlessness associated with a clear and undisputed medical diagnosis. It suggests a model of the self in chronic illness that considers not only changes in body and biography but also the availability of an uncontested diagnosis.

Chronic Disease Coverage in Canadian Aboriginal Newspapers

Purpose: To determine the volume and focus of articles on four chronic diseases in newspapers targeting First Nations, Me´tis, and Inuit in Canada. Methods: From a sampling frame of 31 Aboriginal newspapers published in English from 1996-2000, 14 newspapers were randomly selected allowing for national and regional representation. Newspaper archives were searched at the National Library of Canada and articles selected if the disease terms cancer, cardiovascular disease, diabetes, or HIV/AIDS appeared in the headline, or in the first or last paragraph of the article. Articles were coded for inclusion of mobilizing information (local, distant, unrestricted, not specified, none) and content focus (scientific, human interest, commercial, other). Cancer articles were categorized by tumor site specificity. Data were analyzed by frequency, cross tabulations, and chi-square analysis. Results: Of 400 chronic disease articles, there were significantly more articles on HIV/AIDS (167 or 41.8%) and diabetes (135 or 33.8%) and few articles on cancer (56 or 14%) and cardiovascular disease (30 articles or 7.5%) (p<0.001). Slightly more than one third (36.5%) of the articles contained mobilizing information to enable readers to take further health action. Mobilizing information was virtually absent from cardiovascular (7/30 or 23%) and diabetes (29/135 or 21.5%) articles. Site specific cancer coverage differed significantly from chance (p<0.001) with 41% of the articles on breast cancer and no articles on lung or colorectal cancers. Interpretation: Given the burden of tobacco-related cardiovascular disease and cancer in Canadian Aboriginal people, the lack of coverage and limited mobilizing information in ethnic newspapers are a missed opportunity for health promotion.

A Comparison of Blogs by Depressed Men and Women

This paper reports on a study comparing Internet blogs written by 45 men and 45 women who self-identified as depressed. Using qualitative and inductive methods, distinct differences among the male and female experiences of depression were documented. Among the most important differences were the distinctions male and female bloggers made in regards to (1) the bio-medicalization of depression; (2) the relative significance of world events as compared to relationships in depression experiences; and (3) violence, including suicide and cutting. Theoretical reasons and explanations for these findings are discussed.

Race and Gender in the Media A Content Analysis of Advertisements in Two Mainstream Black Magazines

The present study examines the portrayal of Black men and women in the images and texts of advertisements featured in Black-oriented magazines. A comparative content analysis is conducted on ads featured in Essence and Jet magazines for 2003 and 2004. Quantitative and qualitative data analyses reveal that Black people are portrayed both positively and negatively. Ideologies of racism and White supremacy continue to pervade advertisements featured in Black magazines, and this is problematic because new images and texts concerning Black people will be based on such negative attitudes. It is not enough to increase the number of positive portrayals of Black people; negative portrayals must also decrease and eventually be eliminated altogether.

Mothers’ Home Health Care Work When Their Children Have Cancer

The lack of research devoted to understanding the specific home health care work that mothers of children with cancer perform necessitates research in the area. This study examines the health care activities that mothers of children with cancer must assume in the home (eg, nursing care such as the administration of medicines, protecting the immune-suppressed child from concurrent illness, watching for side effects, record keeping, scheduling checkups and treatments). The implications for public policy of the extent and nature of home and lay health care in the hospital, clinic, and home are discussed.!

Parents as advocates: stories of surplus suffering when a child is diagnosed and treated for cancer.

Abstract Twenty-nine parents of children who had been diagnosed with cancer were interviewed through long and relatively unstructured interviews conducted via telephone by a mother whose own daughter once had cancer. Parents were asked to tell the story of their experiences during the time that they were ‘going through’ cancer. Parents usually began their narrative in the months, weeks, or days prior to the diagnosis. They spoke of various parts of the story. In this paper, the focus is on one topic that parents talked about a lot. We call this ‘problems with the system’ or ‘surplus suffering.’ Here parents reported on their perceptions of mistakes, and delays in diagnosis, errors, carelessness, and unkindness during treatment. They talked of how they felt they had to be on constantguard, and at times, to intervene in their childs care. This paper provides a picture of parental expectations and their violation during the treatment of their children for cancer. It begins to demonstrate how parents see themselves as advocates for their children in a context of fragile power relations.

Surplus Suffering: Differences between Organizational Understandings of Asperger's Syndrome and Those People Who Claim the "Disorder"

This paper presents the results of a content, frame and discourse analysis of Internet sites concerned with Asperger’s syndrome (AS). It investigated blogs written by people who have been diagnosed with AS, as well as organizations devoted to the support of people with AS and their families. The findings document the different and even oppositional perspectives of the organizations and the individual bloggers. The organizations’ website descriptions of AS were based on the premise that AS is a medical disorder and a deficit. The individual bloggers, in contrast, called themselves Aspies and indicated that they were happy with themselves but angry and disappointed with those who tried to change them. Theoretical, methodological, substantive and practical implications of these findings are discussed. The concept of ‘surplus suffering’ is suggested as useful.

Mass print media depictions of cancer and heart disease: community versus individualistic perspectives?

This paper is based on a critical discourse content analysis of 40 stories from the 20 highest circulating English-language mass magazines available in Canada and published in Canada or the USA in 2001. It examines the presence or absence of the social determinants perspective in the portrayal of the two most significant causes of morbidity and mortality in these countries: cancer and heart disease. The media analysis documents an absence of reflection of the social determinants viewpoint on these, the most important causes of disease and death. Thus, magazine stories ignore the role of such considerations as income, education level, ethnicity, visible minority or, Aboriginal status, early life experiences, employment and working conditions, food accessibility and quality, housing, social services, social exclusion, or unemployment and employment security in explaining health. Instead, the magazine articles underscore an individualistic approach to disease that assumes that health care is accessible and available to all, and that these diseases are preventable and treatable through individual lifestyle choices in combination with the measures prescribed through conventional medicine. Although cancer and heart disease are framed by a medical discourse, articles tended to emphasise the independence, freedom and power of the individual within the medical care system. The research documents a continuation of the dominance of conventional medicine buttressed by individualism in media stories. Theoretical and methodological issues are discussed. Some of the practical consequences for policy-makers and professionals are noted.

Women's work, worry and fear: the portrayal of sexuality and sexual health in US magazines for teenage and middle‐aged women, 2000–2007

The purpose of this paper is to report on an exploratory content analysis of the portrayal of sexuality, sexual health and disease in select magazines designed for two groups of women: teenagers and women in the 40–50‐year‐old age category in the USA. The analysis found that magazine portrayal was both similar for the two groups of women and distinctly different. Neither group of magazines focused on womens sexual desire. Both kinds of magazines emphasized that it was womens work and worry to control sexual expression. Teenagers were described as responsible for avoiding sex in order to prevent pregnancy, fearsomely described STIs and untrustworthy male sexual partners. Abstinence was presented as the only viable option for young women. Women in the 40–50‐year‐old age group were portrayed as responsible for the emotion work and sexual relations linked to their responsibility for maintaining their marriages and fulfilling their tasks of motherhood, especially through the monitoring of the sexuality of their female children. Sex was characterized in terms akin to womens work within the home. Possible explanations for, and consequences of, these presentations of sexuality are discussed.

Mother's home healthcare: emotion work when a child has cancer.

Home healthcare work, involving physical labor, nursing care, medical monitoring, administrative, planning and accounting, advocacy and emotion work, is unpaid and largely invisible. This article, based on focus group interviews with mothers whose children have had cancer, describes one part of their home healthcare labor, their emotion work. Specifically, it examines how mothers: manage the moral imperatives of mothering; think about and try to manage the strong feelings, particularly of fear and uncertainty that they often have when their children are ill with cancer; work to understand and maintain their marital relationships; the strategies that seemed to help; and finally, the self-transformation that many mothers experience. The article concludes with a discussion of the substantive, theoretical, research, and policy implications of emotion work in the provision of home healthcare work.