School of Social Work, McMaster University (2019-Present)

Doctoral thesis research with Dr. Christina Sinding

Examining the Social Organization of Migraine in Ontario: An Institutional Ethnography                                                                                                                   

Background: Migraine is among the most prevalent headache disorders affecting people worldwide with 8.3 % of Canadians (2.7 million people) reporting in a population-based study that they had been diagnosed with migraine.¹ Women make up most of this population and have historically fought to legitimize migraine, a condition that was treated with skepticism amongst medical professionals until the 2000s and is still heavily stigmatized.^3,4 Migraine continues to be underdiagnosed and misdiagnosed. Sociologist Joanna Kempner suggests the gendering of neurobiological illness is a contributing factor to migraine patients being underserviced.⁴  Using a feminist method of inquiry, my Master’s study provided preliminary research that demonstrated a need for further investigation into the organization of migraine care from the standpoint of women. In the first year of my PhD I explored healthcare policies relevant to the approval of migraine treatments – policies that negatively impact women disproportionately – and went on to develop and publish my analysis in the Journal of Headache and Face Pain.  Building on these contributions, I undertook a pilot study this year, interviewing women about the details of their pathways to securing a diagnosis and treatment for migraine. My research employs a method of inquiry underutilized in health care and especially suited to explicating the everyday institutional practices that impede effective care women experience and identify pathways to their remedy.

Theoretical Framework: My research draws on a sociological method of inquiry called Institutional Ethnography (IE). IE was developed by Canadian sociologist Dorothy E. Smith and traces how everyday experiences are systematically organized by the day to day, routinized practices and discourse generated in institutional settings.  IE does not begin with a theory or hypothesis, but instead begins with the experiences of people, asking for detailed accounts of what they have had to do and know in order to achieve (in this case) initial diagnosis and treatment for migraine. The inquiry then moves into the care settings described in people’s accounts to examine the institutional coordination of health professional practice in those settings, and the ways that institutional coordination directly influences how care happens (or fails to happen) for patients.  

Study Objectives: My research objectives are to explore – from the standpoint of women diagnosed with migraine – how diagnoses and treatments are socially organized within local medical settings.  This research sets out to explicate in detail how frontline care practices are connected to institutional systems and the influences those systems – in turn – have on care.

Research Implications: As both a social service worker – who spent most of her career working in women’s services – and as a chronic migraine patient myself, I have witnessed a significant lack of understanding, support and funding for women who are challenged by chronic, difficult to treat health conditions. My work highlights how and in what ways institutional practices coordinate everyday healthcare procedures that create access barriers and unnecessary suffering for migraine patients in Ontario. Healthcare policy and care procedure reform, while initiated to respond to patient needs, is often conducted in the absence of patients’ insights and input. Paying attention to the social organization of migraine care in Ontario – beginning from the standpoint of women whose unique experience of care is often overlooked – is instrumental for any healthcare reform that seeks to decrease instances of misdiagnosis, or underdiagnosis, and to improve experiences of care. Additionally, while IE begins from a specific experience, the processes it reveals have wider applications, and in this case could contribute to  our  understanding of how to improve treatment and diagnostic practices for patients with other chronic, difficult to treat and often contested illnesses, many of whom are often women.

References
1. Shekhar, S, Dua, T, Saraceno, B, Mather, C, Steiner, T, Stovner, LL et al. Atlas of Headache Disorders and Resources in the World 2011. World Health Organization. 2011.
2. Ramage-Morin, P, Gilmore, H, Prevalence of migraine in the Canadian household population. Health Reports. 2014; 25(6): 10 -165
3. Finkel, AG. The Legitimization of Headache Medicine. Headache: The Journal of Head and Face Pain. 2008; 48(5): 711-713.
4. Kempner, J. All in Her Brain. Not Tonight. The University of Chicago Press. 2014. 51-74.