Title: Associate Professor, English
University: Ohio State University
Email: teston.2@osu.edu
Twitter: christateston
Website: www.christateston.com
Description of Work:
I study uncertainty in technoscientific and biomedical contexts. In particular, I’m curious about the evidential backstage—or all the work that goes on behind the scenes when humans attempt to corral chaos. My book, Bodies in Flux, was recently released from University of Chicago Press.
Symposium Submission:
Surveying Precarious Publics
In order to gauge multiple publics’ concerns and sense of self-efficacy amid possible changes to the Affordable Care Act (ACA), I, along with a team of researchers around the US, are in the early stages of a nationwide survey-based study. The goal of the study is to collate responses from multiple publics living in the US who will be affected by changes to the ACA. Participants’ responses will provide evidence for claims about healthcare consumers’ anxieties, needs, and expectations. These findings will then be used to design helpful resources for navigating healthcare complexities should the US Government enact changes to the ACA. Since survey results will not be available until the end of Summer 2017, for the purpose of the RHM Symposium, I focus my efforts on a manuscript about strategies for effective survey design when surveying multiple, often precarious publics.
While there exists a good deal of resources for effective survey design for qualitative and/or health researchers, the critical intervention this manuscript will make is more specific guidance for designing surveys intended for participants who may identify as one or more of the following: economically disadvantaged; disabled; drug addicted; undocumented; and XXX. We know that among those who stand to lose coverage, should the ACA be repealed, “81%…would be in working families; 66% would have a high school education or less; 40% would be young adults; and about 50% would be non-Hispanic whites” (Buettgens et al. 2016).
I’m interested in unearthing the difficulties associated with surveying precarious publics—or persons whose networks of social support are weak, if not altogether absent. Complexities associated with survey design for precarious publics have thus far included questions about,
- Criteria for inclusion (e.g., Puerto Rico cannot presently participate in the ACA’s exchanges, but they are a US Territory whose precarious positionality ought to provide valuable insights about contemporary healthcare concerns;
- Stigmatizing Language (e.g. “person with disabilities vs. D/disabled persons; reifying medicalized stigmas associated with certain identities, disorders, and illnesses; proponents of identity-first language)
- Leading Language (e.g. “access to affordable healthcare”)
- Access (e.g. translating the survey for readers whose first language might not be English; making the survey accessible to Disabled participants)
- Demographic Questions (where should they go? How do we describe race/ethnicity? Gender? Education? Those in transition?)
- Liability (e.g. how do we ensure that we’re not conveying an implicit sense of support for certain approaches to accessing healthcare by asking questions in a certain way?)
- Transparency (How much should we reveal about our motives for asking certain questions?)
- In Vivo Languages (ACA vs. “Obamacare”; chronic healthcare condition—should we define, provide examples?)
- Formatting/Layout (percentage complete; number of questions on a page
- Privacy
- Likert Scale (how many numbers to include)
- Incomplete surveys (do we count the completed data?)
- Consent (how do we account for an intermediary person taken the survey on behalf of someone else/)
We hypothesize that, based on survey responses, the materials we design will need to be remediated for different audiences, purposes, and contexts. For example, some materials may address specifically the needs of LGBTQI+ communities while other materials may serve Disabled persons who may or may not identify with LGBTQI+ communities. We also anticipate that these materials will need to be modified to meet the needs of individuals living in specific states. These materials and the resources highlighted therein are not intended to replace official healthcare providers and practices. Rather, they should help to supplement multiple publics’ care in a precarious, post-ACA world.
Our aim is to have some degree of representation from all 50 US States, in addition to Washington D.C. and Puerto Rico. Even though Puerto Rico cannot participate in the exchanges at this time, they are a U.S. territory whose experiences with healthcare ought to be included—especially since they have, according to a January 2017 Urban Institute brief, “experienced both an economic decline and an increase in the emigration of health care professionals” (Peters et al. 2017).
Bibliography
Buettgens, M., Blumber, L.J., Holahan, J. & Ndwandwe, S. (2016). “The Cost of ACA Repeal.” Urban Institute. http://www.rwjf.org/en/library/research/2016/06/the-cost-of-aca-repeal.html
Peters, R., Lallemand, Nicole Cafarella & Zuckerman, Stephen. (2017). “Puerto Rico Health Care Infrastructure Assessment: Site Visit Report.” Urban Institute. http://www.urban.org/research/publication/puerto-rico-health-care-infrastructure-assessment-site-visit-report/view/full_report
Rogers, R. (2013). Digital Methods. MIT Press.
Silverman, D. (2004). Qualitative Research. Sage.