The chronic kidney disease journey of African Americans and Latinx: how can community health workers be an ally?

Introduction: Chronic Kidney Disease (CKD) poses significant challenges, particularly for African American and Latinx communities in the United States (US). Despite the profound impact of CKD on these populations, there is limited understanding of the disease journeys of African American and Latinx CKD patients and their family caregivers. In addition, there is a lack of knowledge about culturally sensitive approaches that are necessary to address health disparities in CKD, such as integrating Community Health Workers (CHWs) into the care models for African American and Latinx patients. This dissertation research aims to fill the knowledge gap by examining the lived experiences of African American and Latinx CKD patients and their family caregivers and creating a roadmap to integrate CHWs in the CKD care model. Method: This qualitative research employed in-depth interviews and photo-elicitation to collect verbal and non-verbal research data. Reflexive thematic analysis was applied to identify patterns in the datasets. Results: The study revealed that African American and Latinx CKD patients experienced profound physical, social, and emotional burdens due to CKD, yet navigated the disease with positivity and support. Despite experiencing systemic barriers, they actively engage with their communities and support other CKD patients. Regarding family caregivers’ lived experiences, we found that they provide extensive care to CKD patients, and they gain significant knowledge about CKD and apply some of them to engage in kidney-friendly lifestyles. Notably, caregivers face emotional and practical challenges, yet while coping with adversities, they demonstrate emotional strength, optimism, and resilience. Finally, our study identified that CHWs could effectively promote the physical and emotional health of CKD patients, assist patients in navigating the healthcare system, bridge patients and family caregivers with clinicians, and provide home care within African American and Latinx communities affected with CKD. By overcoming interpersonal and system-level barriers, as well as addressing other workforce challenges, CHWs can be effectively integrated into CKD care teams. Conclusions: This dissertation research offers a thorough understanding of the lived experiences of African American and Latinx CKD patients and their family caregivers, along with a roadmap to guide the integration of CHWs in CKD care for these populations. The findings from the study contribute to informing policy changes aimed at establishing kidney health equity in the US and enhancing the lives of African American and Latinx individuals impacted by CKD.

Name thesis:degree_name

Ph.D.

Level thesis:degree_level

Dissertation

Discipline thesis:degree_discipline

Community Health

Grantor

University of Illinois at Urbana-Champaign

Year dc:date

2024

Author dc:creator

• Ashrafi, Sadia Anjum

Contributors dc:contributor

• Schwingel, Andiara
• Raj, Minakshi
• Chodzko-Zajko, Wojtek
• Sebastião, Emerson

• Chronic Kidney Disease
• Community Health Workers
• African Americans
• Latinx
• Hispanics
• Family Caregivers
• Patients

Statement dc:rights

• Copyright 2024 Sadia Anjum Ashrafi

Language dc:language

en, eng

Handle dc:identifier

https://hdl.handle.net/2142/124294

OAI record oai:identifier

https://www.ideals.illinois.edu/oai-pmh?verb=GetRecord&metadataPrefix=etdms&identifier=oai%3Awww.ideals.illinois.edu%3A2142%2F124294