Graduate Thesis Or Dissertation
 

Politicized Collective Illness Identity and Boundary-Spanning in Western Montanan Community Health Workers: An Ethnographic Study

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  • Background: Against global health disparities and a shortfall of medical personnel, community health workers (CHWs) promise a solution based in lived experience and connection to the health system. To address global and upstream health determinants, CHW programs engage the perspectives of both the workers they employ and the communities they serve, as local circumstances affect the implementation of programs on the ground. Objectives: Drawing on the concepts of politicized collective illness identity and boundary-spanning from social movement theories, I explored Western Montanan CHWs’ motivations, rationales, strategies, and demands for work and upstream advocacy in order to inform CHW program implementation and ethics through increasing understanding of the process of CHW mobilization. I undertook this research in Western Montana, one of many understudied regions in which CHWs work and mobilize. Local, qualitative research is important for the implementation of public health programs as on-the-ground contexts determine their success; meanwhile, more general research is needed to generate support for CHWs and better understand how transferrable program variables perform in different settings. Methods: I interviewed 17 Western Montanan CHWs and 8 gatekeepers, conducted participant observation of mobilization, and held two member-checking focus groups. I conducted iterative analysis using immersion crystallization, coding materials for CHW perspectives around motivation, and strategies and demands for local health and upstream determinants. Findings: CHWs described personal experiences (e.g., past illness), relationships (e.g., with clients and co-workers), and political concerns (e.g., structural inequalities) as motivators. These informed one another through CHWs’ constructions of health and its social and upstream determinants. CHWs’ strategies, such as motivational interviewing, and demands, such as wraparound care and reduced stigma, centered on relationships and community-building in ways that blurred the lines between health work and activism, and highlighted tensions between their roles as activists, workers, and community members. These themes ground Brown and colleagues’ (2004) concept politicized collective illness identity and Wang et al.’s boundary spanning (2018) in the experiences of CHWs, as their motivations for health work linked their personal and social identities to upstream concerns, and their roles and strategies spanned boundaries between “work” and “activism.” Implications and conclusion: CHWs in this study embodied the intrinsic motivation of politicized collective illness identity, drawing motivation from personal experiences, relationships, and political values. They also spanned boundaries, navigating the tensions presented by their multiple roles as they made upstream and downstream changes to address social suffering and health disparities. Overall, the advantages to CHWs’ work at the boundaries, and the motivation embodied by their collective politicized illness identity, were challenged by working conditions and environments that caused burnout and discouraged their participation in motivating and change-making activities. Publicly, we should consider how to better support CHWs’ agency and labor conditions through the provision of more resources and infrastructures, and more CHW personnel to assist in their efforts. Meanwhile, organizations that employ CHWs should consider how to better support their organization and participation in motivating and mobilizing activities.
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