“I didn’t know it was going to be like this.”: End of Life Care Experiences of Care Aides Care in Long-term Care

Abstract Background: Care aides provide upwards of 90% of the direct care for residents in long-term care (LTC) and thus hold great potential in improving residents’ quality of life and end-of-life (EoL) care experiences. Although the scope and necessity of the care aide role is predicted to increase in the future, there is a lack of understanding around their perceptions and experiences of delivering EoL care in LTC settings. Methods: Data were collected over ten months of fieldwork at one long-term care home in western Canada; semi-structured interviews (70 hours) with 31 care aides; and naturalistic observation (170 hours). Data were analysed using Reflexive Thematic Analysis. Results: Three themes were identified: (i) the lack of training and preparedness for the role of EoL care; (ii) the emotional toll that delivering this care takes on the care aids and; (iii) the need for healing and support among this workforce. Findings show that the vast majority of care aides reported feeling unprepared for the delivery of the complex care work required for good EoL care. Findings indicate that there are not adequate resources available for care aides’ to support the mental and emotional aspect of their role in the delivery of EoL care in LTC. Participants shared unique stories of their own self-care traditions to support their grief, processing and emotional healing. Conclusions: The care aides’ role in LTC is of increasing importance, especially in relation to the ageing population and the delivery of EoL care. To facilitate the health and wellbeing of this essential workforce, care aides need to have appropriate training and preparation for the complex care work required for good EoL care. It is essential that mechanisms in LTC become mandatory to support care aides' mental health and emotional wellbeing in this role.