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Science and Suffering: Genetics and the Lived Experience of Illness

Social Problems

With more than 10,000 conditions connected to pathological genes, genetic science has the potential to substantively impact illness experience. Building on medical sociological and science studies literatures, my study analyzes how genetic discourses and technologies shape the lived-experience of Huntington Disease (HD). Analysis draws on in-depth interviews with 24 individuals with the HD mutation and 14 caregivers (e.g., spouses). Study findings detail how genetic discourses and illness experiences intersect to produce “genetic suffering,” a participant- derived concept describing a novel modality of suffering. Genetic suffering is detailed in relation to four themes: 1) Guilt, responsibility and genetic inheritance, 2) Chance, uncertainty and genetic testing, 3) Ambiguity and genetic onset, and 4) Fatalism and genetic prognosis. After describing the intersections between the science of genetics and suffering in HD families, I discuss the implications of study findings for debates on genetic responsibility and consider the unintended consequences of genetic technologies.


The DSM and Professional Practice: Research, Clinical and Institutional Perspectives

Journal of Health and Social Behavior

How mental illnesses are defined has significant ramifications, given the substantial social and individual repercussions of these conditions. Using actor–network theory, I analyze how mental health professionals use the Diagnostic and Statistical Manual of Mental Disorders (DSM) in their work. Drawing on observations of a neuropsychological laboratory and interviews with 27 professionals (i.e., psychiatrists, psychologists), I investigate how the DSM is used in research, clinical, and institutional work. In research, the DSM influences study design and exclusion/inclusion criteria. In the clinic, the DSM influences how disorders are conceptualized and diagnosed. Institutionally, the DSM aligns the patient–professional encounter to insurance and pharmaceutical interests. I conclude that the DSM operates as multiple, context-specific taxonomies that pervasively influence professional practices, such that all possible actions must orient to DSM criteria, with professionals both a source and an object of institutionalized gaze.

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Diagnosis, Psychiatry and Neurology: The Case of Huntington Disease

Social Science & Medicine

Although Huntington Disease (HD) is recognized as a neurological condition, it has a number of psychiatric effects, with recent studies suggesting that these effects can appear years prior to the telltale neurological symptoms. This trajectory has, in part, led to the misdiagnosis of HD as a psychiatric illness, as explicated in numerous case studies. This paper utilizes HD as a case study to investigate the social consequences of diagnosis by highlighting the tensions and ambiguities between neurology and psychiatry, while also discussing the difficulties that HD creates for psychiatry’s diagnostic schema. Findings are based on 30 in-depth interviews conducted with both individuals with HD and informal caregivers (e.g., spouses) in British Columbia, Canada. The findings address numerous instances of misdiagnosis and the resulting negative impacts for individual health and well-being. The findings are further discussed in relation to the work of Bakhtin and Latour, with suggestions presented to ameliorate such misdiagnoses.


Accounts of Suicidality in the Huntington Disease Community

Journal of Death and Dying

Health professionals, researchers, and philosophers have debated extensively about suicide. Some believe suicides result from mental pathology, whereas others argue that individuals are capable of rational suicide. This debate is particularly poignant within illness communities, where individuals may be suffering from chronic and incurable conditions. This article engages with these issues by presenting the accounts of 20 individuals with Huntington disease (HD), a fatal degenerative condition, and 10 informal caregivers (e.g., spouses). Suicide is a leading cause of death amongst people with HD, with an incidence rate many times higher than the general population. In contrast to the majority of the academic literature on HD suicidality, study participants did not connect suicide with mental pathology. Instead, they perceived suicide as a response to the realities of living with HD, such as prolonged physiological degeneration and the need for long-term intensive health care. These findings are subsequently discussed in relation to the rational-pathological suicide binary.


Structure and Agency: Reflections from an Exploratory Study of Vancouver Indoor Sex Workers (with Vicky Bungay, Chris Atchison and Caitlin Johnston)

Culture, Health and Sexuality

Sex work research continues to be characterised by debates around decriminalization. Central to these debates are claims about the agency of those involved in the sex trade. Some researchers argue that individuals involved in the sex trade are victims of structural and interpersonal constraint, whilst others depict them as workers exercising choice. Drawing on structure-agency theory, a review of legal and media accounts of the sex trade and qualitative interviews with 21 indoor sex workers in Vancouver, Canada, we argue that both of these perspectives are insufficient. Rather than reducing the sex trade to part of a binary, we suggest that it is necessary to analyse sex work through the complex interplay of both structure and agency. Specifically, structural analyses undercover the numerous ways that sex workers are controlled, observed and influenced whilst agency perspectives elicit the means that sex workers continue to exercise control in spite of disadvantage. While we do not finalise decriminalisation debates, we do critique current Canadian laws for the lack of responsiveness to the lives of sex workers and their exploitative and contradictory stance on sex work.

You can also find a version of this paper in Culture, Health and Sexuality: An introduction.


Prostate Cancer Stories in the Canadian Print Media: Representations of Illness, Disease and Masculinities (with Melanie Phillips and John Oliffe)

Sociology of Health & Illness

Despite the popularity of print media as an information source for men with prostate cancer, the representation of prostate cancer within this medium remains relatively understudied. This article details the findings from an analysis of prostate cancer articles published in two Canadian national newspapers, The Globe and Mail and the National Post, from January 2001 through to December 2006. The 817 prostate cancer articles published during this period were retrieved and reviewed using manifest and latent analyses. Three article categories, illness perspectives, medical perspectives and supplementary were identified in the manifest analysis. The latent analysis was guided by the connections between masculinities and prostate cancer in the newspapers’ stories. Findings indicated a low frequency of articles that substantively discussed prostate cancer and that the descriptive content reproduced hegemonic masculine ideals, such as competition and stoicism. The presentation of a truncated illness trajectory and privileging of the curative aspects of biomedicine also depicted medicalised male bodies. Any discussion on the negative effects of treatment or explicit references to marginalised forms of masculinity was conspicuously absent. These findings support how representations of prostate cancer in Canadian newspapers predominately replicate detrimental ideologies and perspectives of men's health.


Violence in the Massage Parlour Industry: Experience of Canadian-born and Immigrant Women (with Vicky Bungay, Peter Halpin, Caitlin Johnston, and David Patrick)

Health Care for Women International

We examined and contrasted 129 Canadian-born and immigrant women's experiences of violence and associated structural and interpersonal factors within indoor commercial sex venues. The majority experienced at least one form of structural, interpersonal, or both types of violence, with the attempted removal of a condom during sexual services being cited most frequently. Canadian-born women reported more frequent violent assaults in the survey data. The women's qualitative narratives illustrated that perceptions of violence differed significantly among Canadian versus non-Canadian born women. Findings concerning racialization and gendered relations of power have important implications for prevention and interventions to support victims of abuse.


How Prostate Cancer Support Groups do and do not Survive: A British Columbian Perspective (with John Oliffe, Joan Bottorff, Greg Hislop, Michael McKenzie, and Lawerence Mroz)

American Journal of Men's Health

Many prostate cancer support groups (PCSGs) have formed in North America during the past decade, yet their operation or factors influencing sustainability are poorly understood. This article reports micro (intragroup), meso (intergroup), and macro (group/structure) analyses drawn from the fieldwork and participant observations conducted for an ethnographic study of PCSGs based in British Columbia, Canada. The findings indicate that effective group leadership is integral to group sustainability and the recruitment and retention of attendees. At the meso level, intergroup connections and communication were often informal; however, the primary purpose of all the PCSGs was to provide information and support to men and their families. Many PCSGs were uncertain how formal associations with cancer fund-raising societies would influence group effectiveness. Macro issues such as prostate cancer activism resided with individual group "champions" through activities coordinated by provincial and national PCSG organizations. However, activism did not guarantee group sustainability. The study findings reveal why some groups flourish while others appear untenable, and form the basis for discussion about how PCSG sustainability might be best achieved.

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Women and Prostate Cancer Support Groups: The Gender Connect? (with Joan Bottoff, John Oliffe, Melanie Phillips, Graham McLean, and Lawerence Mroz)

Social Science & Medicine

There are more than 100 prostate cancer support groups (PCSGs) in Canada, most of which meet on a monthly basis—yet little attention has been paid to the role of women at these groups. As part of an ongoing ethnographic study of PCSGs, we examined women's motivations for attending the groups, their ways of functioning in PCSGs and the benefits they accrued. Participant observations conducted at 13 British Columbian-based PCSGs and individual interview data from 20 women who regularly attended PCSG meetings were analyzed. Although the groups did not overtly limit women's attendance, the women's decisions to attend and their participation at group meetings were subject to much self-reflection, uncertainty and tension. Motivations to access a PCSG included a desire to support their partners, develop understandings about the illness and disease, and to manage their own experience of prostate cancer. Our analyses revealed that women assume three roles in PCSGs: social facilitator, background supporter and cancer co-survivor. The women reported many interrelated benefits as a result of attending, including information, hope and reassurance, and connecting with other women in similar circumstances. The results from this study reveal how traditional feminine ideals, such as nurturing and caring for the men in their lives, facilitating social connections and the desire to share emotional experiences guided the behaviors. Based on the study findings, we suggest that efforts to support women's involvement in PCSGs are critical to enhancing the effectiveness of the groups for both men and women.


Connecting Humor, Health and Masculinities at Prostate Cancer Support Groups (with John Oliffe, John Ogrodniczuk, Joan Bottorff, and Greg Hislop)


Objective: Many commentaries about men's health practices and masculinities indicate that men do not typically engage with self-health or acknowledge illness, let alone openly discuss their health concerns with other men. Prostate cancer support groups (PCSGs) appear to run contrary to such ideals, yet the factors that influence men's attendance and engagement at group meetings are poorly understood. As part of a larger PCSG study, we noticed that humor was central to many group interactions and this prompted us to examine the connections between humor, health, and masculinities.

Methods: A qualitative ethnographic design was used to direct fieldwork and conduct participant observations at the meetings of 16 PCSGs in British Columbia, Canada. Individual semi-structured interviews were completed with 54 men who attended PCSGs to better understand their perceptions about the use of humor at group meetings.

Results: Four themes, disarming stoicism, marking the boundaries, rekindling and reformulating men's sexuality, and when humor goes south were drawn from the analyses. Overall, humor was used to promote inclusiveness, mark the boundaries for providing and receiving mutual help, and develop masculine group norms around men's sexuality. Although there were many benefits to humor there were also some instances when well-intended banter caused discomfort for attendees.

Conclusions: The importance of group leadership was central to preserving the benefits of humor, and the specificities of how humor is used at PCSGs may provide direction for clinical practice and the design of future community-based men's health promotion programs.


Analyzing Participant Produced Photographs from an Ethnographic Study of Fatherhood and Smoking (with John Oliffe, Joan Bottoff, and Mary Kelly)

Research in Nursing and Health

As part of an ongoing ethnographic study, we examined the photographs and narratives that new fathers produced to ascertain how they created social, psychological, and relational space for continued smoking. A four-part process for analyzing the photographs consisting of preview, review, cross-photo comparison, and theorizing revealed how visual data analyses can be used to develop insights into men's health behaviors and beliefs. There is ongoing epistemological debate and methodological uncertainty about how photographic data should be treated in health sciences research. By conducting formal layered analyses, researchers can expand and extend both what is said about, and interpreted through, photographs.