Regimes of Patienthood: Developing an Intersectional Concept to Theorize Illness Experiences

Kelly Ann Joyce, Jennifer E. James, Melanie Jeske

Abstract


In this paper, we develop the concept regimes of patienthood. Regimes of patienthood highlights the micro and macro dimensions of illness, paying close attention to how the interplay between the two creates expectations and points of intervention for people when they are ill. Such expectations may vary across time, place, and social position (e.g., age, class, ethnicity, gender, race, sexuality). Regimes of patienthood are always regimes of power and resistance, where the forms of resistance may vary based on individuals’ intersectional positions. We draw on two cases—a study of 45 mostly white, middle class adults living with autoimmune illnesses and a study of 20 Black women living with advanced cancer—to examine one dimension of regimes of patienthood—control. Although a number of social positions, such as age and race, co-produce illness experiences, we focus on three—class, insurance status, and gender—that are particularly salient in our data in relation to control. Such a move illustrates the theoretical power of regimes of patienthood for science and technology studies (STS).


Keywords


patienthood; medicine; illness; intersectionality

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References


Abraham, John. 2010. “Pharmaceuticalization of Society in Context: Theoretical, Empirical and Health Dimensions.” Sociology 44(4): 603-622.

Appell-Warren, Laura. 2014. “Personhood”: An Examination of the History and Use of an Anthropological Concept. Lewiston, NY: The Edwin Mellen Press.

Armstrong, David. 1995. “The Rise of Surveillance Medicine.” Sociology of Health & Illness 17(3): 393-404.

Bell, Susan and Ann Figert. 2012. “Medicalisation and Pharmaceuticalization at the Intersections: Looking Backward, Sideways and Forward.” Social Science & Medicine 75(5): 775-783. doi: 10.1016/0277-9536(96)00122-0.

Bell, Susan. 2009. DES Daughters: Embodied Knowledge and the Transformation of Women's Health Politics. Philadelphia, PA: Temple University Press.

Clarke, Adele, Janet Shim, Laura Mamo, Jennifer Fosket and Jennifer Fishman. 2003. “Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine.” American Sociological Review 68(2):161-194.

Collins, Patricia Hill and Sirma Bilge. 2016. Intersectionality. 1 edition. Cambridge, UK; Malden, MA: Polity.

Crenshaw, Kimberlé Williams. 1989. “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics." University of Chicago Legal Forum 1(8): 139-167.

Dumit, Joseph. 2012. Drugs for Life: How Pharmaceutical Companies Define Our Health. Durham, NC: Duke University Press.

Erikainen, Sonja, Martyn Pickersgill, Sarah Cunningham-Burley, and Sarah Chan. 2019. “Patienthood and Participation in the Digital Era.” Digital Health 5:1-10. doi: 10.1177/2055207619845546.

Grzanka, Patrick, editor. 2014. Intersectionality: A Foundations and Frontiers Reader. Boulder, CO: Westview Press.

Landzelius, Kyra. 2006. “Introduction: Patient Organization Movements and New Metamorphoses in Patienthood.” Social Science & Medicine 62(3): 529-37.

Lupton, Deborah. 2013a. “The Digitally Engaged Patient: Self-monitoring and Self-care in the Digital Health Era.” Social Theory and Health 11(3): 256–270.

Lupton, D. 2013b. “Quantifying the Body: Monitoring and Measuring Health in the Age of mHealth Technologies.” Critical Public Health 23(4): 393–403.

James, Jennifer E. 2016. “Black Women with Advanced Cancer and the Challenge of Biomedicine: A Black Feminist Methodological Exploration of the Lived Experience of Terminal Illness.” PhD dissertation. Department of Social and Behavioral Sciences, University of California, San Francisco.

Joyce, Kelly and Melanie Jeske. 2019. “Revisiting the Sick Role: Performing Regimes of Patienthood in the 21st Century.” Sociological Viewpoints 33(1): 70-90. doi:10.26908/3312019_016.

Kerr, Anne and Sarah Cunningham-Burley. 2015. “Embodied Innovation and Regulation of Medical Technoscience: Transformations in Cancer Patienthood.” Law, Innovation and Technology 7(2):187-205. doi: 10.1080/17579961.2015.1106103.

Klawiter, Maren. 2008. The Biopolitics of Cancer: Changing Cultures of Disease and Activism. Minneapolis, MN: University of Minnesota Press.

--------. 2004. “Breast Cancer in Two Regimes: The Impact of Social Movements on Illness Experience.” Sociology of Health & Illness 26(6):845-874. doi: 10.1111/j.1467-9566.2004.421_1.x.

Lorber, Judith and Lisa Jean Moore. 2002. Gender and the Social Construction of Illness, Second Edition. Lanham, MD: AltaMira Press.

Neff, G. and D. Nafus. 2016. Self-Tracking. Cambridge, MA: MIT Press.

Rabinow, Paul. 1996. Essays on the Anthropology of Reason. Princeton, NJ: Princeton University Press.

Rose, Nikolas. 1996. Inventing Our Selves: Psychology, Power and Personhood. Cambridge, New York & Melbourne: Cambridge University Press.

Roy, Deboleena. 2018. Molecular Feminisms: Biology, Becomings, and Life in the Lab. Seattle, WA: University of Washington Press.

Schull, N. 2016. “Data for Life: Wearable Technology and the Design of Self-care.” BioSocieties 11(3): 317-333.

Shim, Janet K. 2010. “Cultural Health Capital: A Theoretical Approach to Understanding Health Care Interactions and the Dynamics of Unequal Treatment.” Journal of Health and Social Behavior 51(1):1-15. doi: 10.1177/0022146509361185.

Sosnowy, Collette. 2014. “Practicing Patienthood Online: Social Media, Chronic Illness, and Lay Expertise.” Societies 4:316-329. doi:10.3390/soc4020316.

Vinson, Alexandra. 2016. “’Constrained Collaboration’: Patient Empowerment Discourse as Resource for Countervailing Power.” Sociology of Health & Illness 38(8): 1364-1378.




DOI: https://doi.org/10.17351/ests2020.389



Copyright (c) 2020 Kelly Ann Joyce, Jennifer E. James, Melanie Jeske

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