About the Project

Older adults and individuals with disabilities prefer to receive long-term services and supports (LTSS) in their homes and communities, and demand is expected to increase as a result of COVID-19,  as home settings are likely safer than congregate care. LTSS consumers are often at increased risk of COVID-19 complications due to age and pre-existing health conditions. LTSS involves hands-on care that typically cannot be postponed or replaced by telehealth, and while home-based care may be safer than institutional care settings during an infectious disease pandemic, it is also less regulated and not always guided by a clear chain of responsibility. The flexibility and freedom in providing care in home-based settings supports individualized care practices, but may also make it challenging to identify, implement, and enforce best practices; including safety practices to reduce the spread of COVID-19, where guidance is changing rapidly and surrounded by many myths and unknowns. Further, private homes are not isolated settings -- these are still networks of care in which disease can be spread across connected households. Concerns over personal safety, coupled with other issues that have long-plagued the LTSS workforce such as low-wages and lack of benefits, further threaten an already strained workforce. The capacity for delivering quality care in home-based LTSS settings is experiencing new challenges, and while consumer and worker safety and well-being are more important than ever, new safety practices may be difficult to implement and sustain.

The end goal of this project to identify policy needs and care strategies that can improve the sustainability of the home care workforce; safety of home care practices; and ultimately, the health and well-being of consumers, informal caregivers, and direct service workers (DSW). To do that, we investigate the following research questions:

1. How did the system respond to meet the LTSS care needs of home-based consumers during the pandemic? In particular, how were COVID-19 safety practices identified, negotiated, implemented, and managed across care team members and consumers in private home settings?
2. How are external and structural factors and worker and consumer attitudes, beliefs, and behaviors related to COVID-19 and care processes?
3. How did adaptations to COVID-19 impact the degree to which consumer care needs were met; care satisfaction; and consumer, caregiver, and worker well-being?

These questions will be answered using a mixed-methods interview and survey design to collect data from Medicaid-funded home care consumers, family caregivers, workers, and providers in Kansas. The study is guided by the System Engineering Initiative for Patient Safety (SEIPS) conceptual model, which links external and structural factors to the process of care and care outcomes, highlighting the role of the adaptations and workarounds that occur when the system is out of balance. Expected outcomes of this research project include the identification of threats to the home care LTSS system, including the health and safety of LTSS consumers and direct service workers, as well as policies and other strategies to address these threats. Increased understanding of the relationships between structural factors and attitudes, beliefs, and behaviors related to COVID-19 and care processes can also inform the support and training needs of consumers, direct service workers, and caregivers.

Findings and Results

We are presenting emergent findings on an ongoing basis, including at Academy Health, Association for Professionals in Infection Control and Epidemiology, Gerontological Society of America, Midwest Sociological Society, and the University of Kansas.  We are also sharing research briefs with stakeholders and policymakers.  Research reports and presentations will be posted here after we have completed data collection.  Email us at homecarestudy@ku.edu if you are interested in being added to our dissemination email list.