“Knowing That These People Relied on Me”: A Narrative Inquiry of Direct Care Workers’ Experiences during the COVID-19 Pandemic

Background and Purpose:
The COVID-19 pandemic exposed and intensified longstanding structural challenges in the direct care workforce, including low wages, workforce shortages, and fragmented care systems. In Kansas, these challenges are shaped by a privatized Medicaid known as KanCare, in which Managed Care Organizations (MCOs) are intended to provide case management and care coordination services for waiver recipients. While prior research has documented these challenges, less is known about how workers made sense of their experiences over time. This study aims to examine how the pandemic shaped the everyday lives of direct support workers (DSWs) and how these experiences reflect broader structural conditions within the long-term care system. Specifically, this study examines how workers experienced and made sense of these challenges and how their narratives reflect broader structural conditions.

Methods:
This study draws on in-depth interviews from a larger mixed-methods study of Medicaid-funded Home- and Community-Based Services (HCBS) in Kansas. Using narrative inquiry, the analysis focuses on the stories of two experienced self-directed DSWs, selected as illustrative cases from a larger sample of 14 DSWs participants. Data were originally collected through semi-structured interviews conducted between 2021 and 2023. The researcher engaged in thematic and structural analysis through a process of restorying, organizing narratives across key themes. The study is guided by a critical realist framework and social reproduction theory to connect lived experiences with broader structural contexts.

Results:
Findings indicate that the pandemic did not introduce entirely new challenges, but intensified pre-existing conditions rooted in the structural undervaluation of care work, including workforce shortages, limited institutional support, and fragmented care coordination under KanCare. As a result, DCWs assumed expanded roles in meeting clients’ needs, often at personal, financial, and emotional cost. They also reported limited access to information about clients’ COVID-19 status and exclusion from protections and recognition afforded to other healthcare workers, including vaccine access. Despite these constraints, workers demonstrated agency by framing care work as meaningful and socially valuable, emphasizing their commitment to clients as “part of our society,” and continuing their work with a sense of responsibility grounded in “knowing that these people relied on me.”

Conclusions and Implications:

This study shows that when an external event such as the COVID-19 pandemic occurs, work demands and risks are concentrated on frontline care workers. Under KanCare, where MCOs play a role for coordinating services, gaps in implementation sometimes shift the burden of care onto frontline workers serving low-income and medically vulnerable clients. Within these conditions, DSWs actively recognize their roles and take on responsibilities to support clients. These practices suggest their potential as social actors capable of contributing to social change. Also, recognizing direct care workers as essential workers must go beyond a symbolic declaration and include the establishment of institutional frameworks that allow workers to structurally participate in the discussion and decision-making processes related to care policies. Such participation must be linked to the establishment of clear standards for ensuring workers' safety and livable wages, as well as securing sufficient public funding.