Home Care Workers’ Experiences of Client Death and Disenfranchised Grief

While many types of health care workers experience patient death, home care workers do so under vastly different social and economic circumstances. When a client dies, home care workers often lose both a close relationship and a job. Though research suggests that health care workers’ grief may frequently be disenfranchised, there is no in-depth study of the mechanisms that disenfranchise home care workers’ grief specifically. To address this gap, our study used focus groups and peer interviews between home care workers in New York City. We describe four interrelated grief strategies they employ to navigate social and employer-based “grieving rules.” Our findings suggest that home care workers’ grief is disenfranchised via employer and societal underestimations of their relationships with clients and their losses when clients die, particularly job loss. Building on our findings, we suggest alterations to agency practices and home care systems to improve support for workers.