Primary Submission Category: Place/Communities
Community Insights on Organ and Tissue Donation to Improve Outreach in the West and South sides of Chicago
Authors: Jennifer Holcomb, Anna Forte, Esperanza Garcia, Melinda Banks, Jackie Jacobs, Julie Flannery, Audrena Spence, Audrena Spence, Julie Flannery,
Presenting Author: Lizbeth Garcia*
Black and Latine communities are the largest demographic groups on the organ donor waiting list yet comprise the smallest groups on the donation registry. It is crucial to increase organ and tissue donation registrations within these communities to promote health equity. Gift of Hope Organ and Tissue Donation Network, a nonprofit organ procurement organization, is working to reduce this gap by improving donation rates among the West and South sides of Chicago. The Gift of Hope Community Foundation (Community Foundation) partnered with Sinai Urban Health Institute (SUHI) to develop a qualitative longitudinal evaluation to explore attitudes, beliefs, and norms impacting organ and tissue donation and create communication materials.
SUHI conducted two rounds of focus groups in English or Spanish with community leaders. During the first round, knowledge about the donation process, and motivators and barriers to registration were assessed. The Community Foundation used this information to draft key messaging materials. In the second round, participants provided feedback on the overall messaging and community relevance. The focus groups analyzed using rapid qualitative analysis.
A total of 28 participants attended at least one focus group. Participants’ ages ranged from 22 to 72 years. Most identified as female (85%), Hispanic/Latine (68%), and Black/African American (32%). Findings emphasized the role of stigma, fear, and lack of trust in the medical system as barriers to organ and tissue donation, while the impact of testimonies from organ recipients and donors emerged as a key motivator. Participants provided suggestions to improve culturally appropriate messages. Participants recommended tailoring outreach to focus on donation education rather than registration This project underscores the value of integrating community voices into developing public health strategies, leading to more culturally responsive and effective education and outreach strategies.