A Systems Thinking, Community-Based Exploration of Health Equity and Agency: Women’s Migraine as a Paradigmatic Case

Background. Creating health equity—“the attainment of the highest level of health for all people”— is a core tenet of public health (American Public Health Association, 2015; United States Department of Health and Human Services, 2011, p. 1). Achieving health equity requires the identification and amelioration of patterns of systemic disadvantage and the elimination of health disparities (Gostin & Powers, 2006; United States Department of Health and Human Services, 2011). To do this, health researchers must address social determinants of health (SDOH) and of equity. I have selected women with migraine as a paradigmatic case for this exploration of health equity and agency.

Migraine is a common and debilitating neurobiological disorder without a cure (Goadsby, 2012). It affects almost three times as many women as men, and disproportionately disables women occupying low social locations, that is, occupying a low position on the social hierarchy (Burch, Loder, Loder, & Smitherman, 2015b; Stewart, Roy, & Lipton, 2013). A dearth of effective and affordable treatment options has rendered non-pharmacological self-management a crucial part of living with migraine, yet clinical treatment guidelines consistently emphasize pharmacological intervention (Becker et al., 2015; Diamond et al., 2007; Raphael, 2012). Much of migraine research is epidemiological (Burch et al., 2015b; Buse et al., 2013; Lipton, Serrano, Holland, et al., 2013). The resulting gap in knowledge around the experiences and needs of women navigating the complexities of life with migraine is especially pronounced for those who are less likely or able to access systems that document and treat the condition.

Objective and Methods. The overall purpose of this dissertation is to develop knowledge on the effects of social and structural determinants on the experiences of women living with migraine, with attention to their strategies and priorities for self-management through a systems thinking lens. To do this in the context of this dissertation, I first explore the benefits of critical systems approaches for health equity research (Chapter 2), followed by a description of the development and use of two systems thinking tools for data collection in community focus groups of women with migraine (Chapter 3). Our study team used the system support map tool (SSM) to identify and describe migraine triggers and features, self-management strategies, and the needs and outcomes associated with self-management (Chapter 4). The connection circle (CC) tool explored the relationships between triggers and features, self-management strategies, and outcomes (Chapter 5).

We conducted seven focus groups with 19 women with migraine from diverse social locations and analyzed the data using qualitative content analysis, dimensional analysis, and measures of complexity. We examined variation by social location in the data from both tools.

Findings. The tools we developed allowed us to feasibly and effectively collect rich and nuanced data from community-based women with migraine. One of the tools—the CC— may be more effective when coupled with problem solving techniques when used with women in low social locations (Chapter 3).

The SSM data underscored the distinctions in migraine experience by social location (Chapter 4). While women from all social locations identified stress as a top migraine trigger, descriptions and definitions of stress varied. Women in low social locations were more likely to engage in isolating and avoidant self-management activities, and women in higher social locations were more likely to use proactive, complementary, and integrative approaches. Women in low social locations had lower expectations for self-management and were more interested in pain management than women in higher social locations, who were more interested in self-improvement.

The CC data revealed that ‘conceptualization of complexity,’ or the way and degree to which participants contemplated dynamic interrelationships, was a key dimension in understanding how women in diverse social locations identified relationships between different aspects of their migraine experiences. There were clear differences in the conceptualizations of and capacities for complexity by social location. Women in high social locations demonstrated greater depth, breadth, and structure of this key dimension than women in low social locations.

Discussion and Conclusions. As a non-fatal, but highly disabling, condition with limited and costly treatment options, migraine provides an excellent paradigmatic case for exploring health equity. Ability to have a high quality of life with migraine may be deeply entwined with one’s social location. Therefore, to improve the experiences of the group most affected by migraine—women in low social locations—we cannot limit our research and treatment to the biological and behavioral. We need to think in terms of the social and structural. Creating equitable outcomes, wherein everyone has an equal opportunity for a fulfilling and healthy life, requires that we intervene on multiple levels, engage with affected women, and explicitly commit to addressing social and structural determinants of health AND equity.