Home Care Workers’ Experiences of Client Death and Disenfranchised Grief

Abstract

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.

Witnesses and Victims Both: Healthcare Workers and Grief in the Time of COVID-19

“…16 HCWs' grief is associated with burnout and distress as bereaved HCWs strive to balance caring, professional identities, and evolving work responsibilities. [17][18][19][20] Burnout itself may be the direct result of an inability to integrate inevitable, mounting losses into an ongoing career and life. As busy clinicians move "onto the next," grief compounds and the consequences of unprocessed grief accumulate.…”

Eliciting the educational needs and priorities of home care workers on end-of-life care for patients with heart failure using nominal group technique

“…11,12 Home care workers thus often experience a range of emotional responses at the loss of that relationship. 13…”

“…11,12 Home care workers thus often experience a range of emotional responses at the loss of that relationship. 13 A majority of home care workers do not receive systematic training on and feel ill-equipped to provide endof-life care for heart failure patients. 12,[14][15][16] States in the U.S. have invested funds towards the training and development of home health workers; however, limited research has explored their training needs.…”

Producing ‘Top Tips’ for Care Home Staff During the COVID-19 Pandemic in England: Rapid Reviews Inform Evidence-Based Practice but Reveal Major Gaps

“…There is very little research that has investigated how care home staff experience the death of care home residents and to what extent they are prepared for this experience and supported in their bereavement. Indeed, staff grief may be overlooked (Tsui et al, 2019) leading to what is known as disenfranchised grief. What evidence exists suggests there is a need to prepare staff via better education about bereavement (Österlind et al, 2011) and a need to have bereavement support mechanisms in place (Carton & Hupcey, 2014;Boerner et al, 2015).…”