Community health workers supporting emerging adults with sickle cell disease

Background: Community health workers (CHWs) are vital links between communities and health systems, with CHW models facilitating positive health and life outcomes. However, little is known about CHWs’ experiences serving in these roles or their potential to support the transition to adulthood for ad...

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Main Authors: Sadie M. Butcher, Caren Steinway, Brahadesh Sivakumar, Katherine Wu, Toyosi Oluwole, Desireé N. Williford, Sophia Jan, Symme W. Trachtenberg, Kim Smith-Whitley, Tanisha D. Belton
Format: Article
Language:English
Published: Elsevier 2025-01-01
Series:Health Care Transitions
Online Access:http://www.sciencedirect.com/science/article/pii/S2949923224000515
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author Sadie M. Butcher
Caren Steinway
Brahadesh Sivakumar
Katherine Wu
Toyosi Oluwole
Desireé N. Williford
Sophia Jan
Symme W. Trachtenberg
Kim Smith-Whitley
Tanisha D. Belton
author_facet Sadie M. Butcher
Caren Steinway
Brahadesh Sivakumar
Katherine Wu
Toyosi Oluwole
Desireé N. Williford
Sophia Jan
Symme W. Trachtenberg
Kim Smith-Whitley
Tanisha D. Belton
author_sort Sadie M. Butcher
collection DOAJ
description Background: Community health workers (CHWs) are vital links between communities and health systems, with CHW models facilitating positive health and life outcomes. However, little is known about CHWs’ experiences serving in these roles or their potential to support the transition to adulthood for adolescents and young adults (AYA). Methods: Semi-structured interviews were conducted with CHWs and their supervisors from five recruitment sites affiliated with Community Health Worker and Mobile Health for Emerging Adults Transitioning Sickle Cell Disease Care (COMETS) Trial. COMETS compared the effectiveness of a CHW intervention, mobile health application, or enhanced usual care on the health-related quality of life of AYA with SCD transitioning from pediatric to adult care. To understand CHW and CHW supervisor experiences during the COMETS trial, interviews were analyzed using an integrated inductive and deductive thematic analytic approach. Results: Three key themes emerged as interviewees described the unique aspects of the CHW role: (1) the supports for transition to adulthood that CHWs provided to patients, (2) the experiences of establishing trusting relationships with patients, and (3) the impact of the role on CHWs themselves. All interviewees reported unique contributions made by CHWs in supporting patients’ transition readiness, and CHWs expressed that participating in COMETS impacted them personally and professionally. Conclusion: This study highlights that the CHW role is unique both in how CHWs connect with AYA and how it impacts CHWs. Health systems should explore paths for sustainable funding and workforce development for CHWs and invest in infrastructure for CHW transition programs.
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spelling doaj-art-5ea2a4900e14416ab8e6cd8a2b24c8612025-08-20T02:51:12ZengElsevierHealth Care Transitions2949-92322025-01-01310009110.1016/j.hctj.2024.100091Community health workers supporting emerging adults with sickle cell diseaseSadie M. Butcher0Caren Steinway1Brahadesh Sivakumar2Katherine Wu3Toyosi Oluwole4Desireé N. Williford5Sophia Jan6Symme W. Trachtenberg7Kim Smith-Whitley8Tanisha D. Belton9PolicyLab, Children’s Hospital of Philadelphia, Philadelphia, PA, United States; Division of General Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesDepartment of Pediatrics, Northwell Health, New Hyde Park, NY, United States; Department of Pediatrics, Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, United States; Correspondence to: Northwell Health, 2000 Marcus Ave, Suite 300, New Hyde Park, NY 11042-1069, United States.Nova Southeastern University Dr. Kiran C. Patel College of Osteopathic Medicine, United StatesPolicyLab, Children’s Hospital of Philadelphia, Philadelphia, PA, United States; Qualitative Research Core, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesUniversity of California San Francisco School of Medicine, United StatesCincinnati Children's Hospital Medical Center, United StatesDepartment of Pediatrics, Northwell Health, New Hyde Park, NY, United States; Department of Pediatrics, Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, United StatesDivision of General Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesDivision of General Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesPolicyLab, Children’s Hospital of Philadelphia, Philadelphia, PA, United States; Division of General Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA, United StatesBackground: Community health workers (CHWs) are vital links between communities and health systems, with CHW models facilitating positive health and life outcomes. However, little is known about CHWs’ experiences serving in these roles or their potential to support the transition to adulthood for adolescents and young adults (AYA). Methods: Semi-structured interviews were conducted with CHWs and their supervisors from five recruitment sites affiliated with Community Health Worker and Mobile Health for Emerging Adults Transitioning Sickle Cell Disease Care (COMETS) Trial. COMETS compared the effectiveness of a CHW intervention, mobile health application, or enhanced usual care on the health-related quality of life of AYA with SCD transitioning from pediatric to adult care. To understand CHW and CHW supervisor experiences during the COMETS trial, interviews were analyzed using an integrated inductive and deductive thematic analytic approach. Results: Three key themes emerged as interviewees described the unique aspects of the CHW role: (1) the supports for transition to adulthood that CHWs provided to patients, (2) the experiences of establishing trusting relationships with patients, and (3) the impact of the role on CHWs themselves. All interviewees reported unique contributions made by CHWs in supporting patients’ transition readiness, and CHWs expressed that participating in COMETS impacted them personally and professionally. Conclusion: This study highlights that the CHW role is unique both in how CHWs connect with AYA and how it impacts CHWs. Health systems should explore paths for sustainable funding and workforce development for CHWs and invest in infrastructure for CHW transition programs.http://www.sciencedirect.com/science/article/pii/S2949923224000515
spellingShingle Sadie M. Butcher
Caren Steinway
Brahadesh Sivakumar
Katherine Wu
Toyosi Oluwole
Desireé N. Williford
Sophia Jan
Symme W. Trachtenberg
Kim Smith-Whitley
Tanisha D. Belton
Community health workers supporting emerging adults with sickle cell disease
Health Care Transitions
title Community health workers supporting emerging adults with sickle cell disease
title_full Community health workers supporting emerging adults with sickle cell disease
title_fullStr Community health workers supporting emerging adults with sickle cell disease
title_full_unstemmed Community health workers supporting emerging adults with sickle cell disease
title_short Community health workers supporting emerging adults with sickle cell disease
title_sort community health workers supporting emerging adults with sickle cell disease
url http://www.sciencedirect.com/science/article/pii/S2949923224000515
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