This research project, which formed part of my Integrative Paper (Pre-Candidacy Research), focused on understanding the information behavior of women with systemic lupus erythematosus (SLE) and its impact on medication adherence. While lupus is less deadly today than it was historically, it remains a serious illness associated with significant complications and increased healthcare costs. Despite some existing research on lupus patients’ information behavior, little is known about how information influences medication adherence specifically. This study aimed to fill that gap by exploring the information needs, practices, and behaviors of women with SLE, and how factors such as self-efficacy, health literacy, and uncertainty influenced their adherence to prescribed medications. Data were gathered through a Qualtrics survey and analyzed to provide actionable insights for healthcare providers and patients to improve medication adherence and health outcomes.

The University of Maryland Institutional Review Board (IRB) approved this project in March 2025, and participant recruitment began in late March 2025.

I plan to continue exploring this topic in my doctoral dissertation, expanding my investigation by including women with all autoimmune diseased and conducting interviews to build on the foundational work I have already completed.

This project, which started in the fall of 2024 as part of a course assignment, is a collaboration between Marilyn Harbert (another PhD student in my cohort) and me. It is a qualitative, interview-based study exploring the health information-seeking behaviors of individuals who identify as both LGBTQ+ and disabled. There are millions of LGBTQ+ people with disabilities in the U.S., yet very little research has explored their health information behaviors. Grounded in intersectionality theory, this project is guided by two research questions: 

1. What factors support or impede the seeking of actionable and useful disability-related information by LGBTQ+ individuals with disabilities when they need it?

2. How do LGBTQ+ individuals with disabilities seek information about healthcare providers and what factors impact their selection?

Preliminary findings have shown that participants’ LGBTQ+ identities and disabilities have significantly impacted their health information seeking experiences, and for some participants they had unique experiences at the overlap of those identities. 

We received IRB approval in November 2024 and have since paused recruitment as we shift focus to our doctoral research. A paper describing our initial findings will be presented at the ISIC Conference this June and will be published in Information Research.

This is an ongoing, multidisciplinary project that is part of the Pandemic Readiness Initiative at the University of Maryland. It began in the Spring of 2023 and was a three part study: 

1. Pilot cognitive interviews

2. Online survey via Qualtrics

3. Interviews via Zoom

We are currently in the analysis phase and have began publishing and presenting our findings (references and links can be found on Publications & Presentations page). There are multiple other papers planned, which we hope to complete and submit in 2026.

Recent article about our project:

Tucker, J. (2025, June 18). COVID ‘long-haulers’ lack reliable information, UMD study shows. Maryland Today. https://today.umd.edu/covid-long-haulers-lack-reliable-information-umd-study-shows