517 - Qualitative Study Examining the Experiences of CHWs in the Management of Care Transitions for Emerging Adults with Sickle Cell Disease (COMETS) Trial

Publication Number: 517.6218

Caren Steinway, Cohen Children's Medical Center, Queens, NY, United States; Brahadesh Sivakumar, Nova Southeastern University Dr. Kiran C. Patel College of Allopathic Medicine, Longmeadow, MA, United States; Sadie M. Butcher, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Katherine Wu, Childrens Hospital of Philadelphia, Philadelphia, PA, United States; Symme W. Trachtenberg, Children's Hospital of Philadelphia, King of Prussia, PA, United States; Toyosi Oluwole, UCSF School of Medicine, San Francisco, CA, United States; Desireé N.. Williford, Cincinnati Children's Hospital Medical Center & University of Cincinnati, Cincinnati, OH, United States; Kim Smith-Whitley, Perelman School of Medicine at the University of Pennsylvania, Lafayette Hill, PA, United States; Sophia Jan, Cohen Children's Medical Center of Northwell Health, New Hyde Park, NY, United States; Tanisha Belton, Childrens Hospital of Philadelphia, Philadelphia, PA, United States

Background: Community Health Workers (CHWs) are vital links between communities and health systems, with CHW models showing positive health and life outcomes. However, little is known about CHWs’ experiences serving in these roles or the role of CHWs in supporting young adults with chronic conditions as they transition to adulthood.

Objective: To explore the experiences of CHWs and their supervisors implementing a structured CHW intervention aiming to improve health-related quality of life among emerging adults with sickle cell disease at five pediatric institutions, with a particular focus on understanding how CHWs supported patients in ways that were unique from other roles on the healthcare team.

Design/Methods: Semi-structured interviews were conducted across the five recruitment sites affiliated with the COMETS study, a clinical trial comparing the effectiveness of access to a CHW, mobile health application, or enhanced usual care on the health-related quality of life of individuals with SCD transitioning from pediatric to adult care. Interviews were coded and analyzed using an integrated inductive and deductive approach with the goal of understanding the implementation experiences of individuals serving as CHWs and CHW supervisors on the COMETS trial.

Results: Interviews were conducted with 5 CHWs and 6 CHW supervisors. CHWs ranged from 24-72 years old (median age: 32). CHWs had previous personal or professional experience with SCD (3 of 5 disclosed a SCD diagnosis). Interviews with CHWs lasted approximately 1 hour 45 minutes (range: 61 -115 min). Interviews with supervisors lasted approximately an hour (range: 35-69 min). Three major themes were identified: supports for transition to adulthood, establishing trusting relationships, and impact on CHWs (see Tables 1-3). All interviewees reported that CHWs can connect and work with patients to support transition to adulthood in ways that other clinical professionals are not. CHWs expressed that participating in the study impacted them personally and contributed to their professional development.

Conclusion(s): This study highlights that the CHW role on the COMETS study was unique both in how CHWs connected with and supported patients and how it impacted CHWs personally and professionally. Future studies should aim to quantify the value of access to a CHW professional for young adults with chronic illnesses transitioning to adult care.

Table 1: “Supports for transition to adulthood” subthemes and illustrative quotes


Table 2: “Establishing trusting relationships” subthemes and illustrative quotes


Table 3: “Impact on CHWs” subthemes and illustrative quotes