Ethics Considerations in Designing a Research Protocol with and for Women Experiencing Homelessness and Women Who Are Incarcerated
Saturday, September 21, 2024
11:30 AM – 12:30 PM CT
Location: Regency Ballroom B (First Floor)
Abstract: Trauma universally impacts women experiencing homelessness and women who are incarcerated. Nearly 100% have been exposed to traumatic events—including physical abuse, sexual trauma, and domestic violence—compared to 50% of general population women. A marked 60% are thought to have posttraumatic stress disorder, far exceeding the 8% seen in general population women. To address these disparities, our team has recruited >230 women in three homeless shelters and three prisons to test a trauma-focused intervention via a feasibility/acceptability waitlist randomized-controlled trial. Prior to and within the first few months of trial initiation, interest in enrollment/participation outpaced expectations, suggesting a level of trust in research from this population that was not anticipated by our team. We thus sought to qualitatively elicit perspectives from participants about why they felt comfortable enrolling in the trial. We conducted and analyzed 42 semi-structured interviews with 32 unique participants (10 follow-up interviews), including women experiencing homelessness, women who are incarcerated, and healthcare professionals/staff, using a deductive-inductive content analysis approach. We deductively used the Belmont Report to frame participant perspectives, using three major themes: 1. Respect for Persons 2. Beneficence, 3. Justice. We then used participant words to inform categories scaffolding each major theme. Women commented on honoring the right to self-determination and continuous consent that occurred at each study visit; ensuring benefit, or a favorable benefit-burden balance; and reducing the distance between “researcher and researched”, integrating those with lived experience/vulnerable status onto the study team. Findings add understanding of strategies to ensure protection and empowerment of vulnerable participants.
Learning Objectives:
After participating in this conference, attendees should be able to:
Understand a brief history of research ethics with vulnerable participants in the United States, particularly focused on those who are racially and socioeconomically marginalized, and those who are incarcerated.
Create dialogue around the process of engaging vulnerable participants to elicit perspectives regarding research ethics and optimized participatory protocols.
Apply findings – namely, recommendations of vulnerable research participants to optimize community engaged research ethics – to the design and implementation of current research and future research protocols.