“I didn’t know it was going to be like this.”: unprepared for end-of-Life care, the experiences of care aides care in long-term care

BMC Palliative Care

Research

Claire Surr¹  Laura Booi¹  Habib Chaudhury²  Andrew Sixsmith³  Melanie Young⁴  Judith Sixsmith⁵  Deborah O’connor⁶ 

[1] Centre for Dementia Research, School of Health, Leeds Beckett University, Leeds Beckett University, CL521 Calverley Building, City Campus, LS1 3HE, Leeds, UK;Department of Gerontology, Simon Fraser University, Suite #2800, Harbour Centre, 515 W Hastings Street, V6B 5K3, Vancouver, BC, Canada;Department of Gerontology, Simon Fraser University, Suite #2800, Harbour Centre, 515 W Hastings Street, V6B 5K3, Vancouver, British Columbia, Canada;Kiwanis Village, Vancouver Island Health Authority, British Columbia, Canada;School of Nursing and Health Sciences, University of Dundee, 11 Airlie Pl, DD1 4HJ, Dundee, UK;School of Social Work, Centre for Research on Personhood in Dementia (CRPD), University of British Columbia, Jack Bell Building, 2080 West Mall, V6T 1Z2, Co-Director, Vancouver, BC, Canada;

关键词: Care aides;    Long-term care;    Moral distress;    End of life;    Older adults;    Palliative care;    Dementia;    Qualitative research;    Work satisfaction;    Working conditions;   

DOI  :  10.1186/s12904-023-01244-y

 received in 2022-07-21, accepted in 2023-08-14,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundCare aides provide up to 70–90% 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. The aim of this study was to gain an understanding of the perspectives, experiences, and working conditions of care aides delivering end-of-life care in LTC in a rural setting, within a high-income country.MethodsData were collected over ten months of fieldwork at one long-term care home in western Canada; semi-structured interviews (70 h) with 31 care aides; and observation (170 h). Data were analysed using Reflexive Thematic Analysis.ResultsTwo themes were identified: (i) the emotional toll that delivering this care takes on the care aids and; (ii) 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 no adequate resources available for care aides’ to support the mental and emotional aspects 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.ConclusionsTo facilitate the health and well-being of this essential workforce internationally, 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 well-being in this role. Implications for practice highlight the need for greater care and attention played on the part of the educational settings during their selection and acceptance process to train care aides to ensure they have previous experience and societal awareness of what care in LTC settings entails, especially regarding EoL experiences.

【 授权许可】

CC BY   
© BioMed Central Ltd., part of Springer Nature 2023

【 图 表 】

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