'I tried to get into their shoes and their culture'. Care worker experiences in cultural end-of-life care: Interpretative phenomenological analysis

Abstract

Aim: What are care workers' lived experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care?

Design: Interpretative phenomenological analysis METHODS: The lived experiences of 11 care workers within the Australian Capital Territory and region who have cared for someone of a culturally and linguistically diverse background during end-of-life care were captured. Each care worker was interviewed individually and answered a series of semi-structured open-ended questions.

Results: Using interpretative phenomenological analysis, three group experiential themes were derived: (i) navigating cultural shock and death, (ii) the hard work of communication and (iii) searching for deeper connections with client and self. Within these were key elements: Care workers worked hard to embrace cultural diversity, but struggled to meet cultural needs, particularly in relation to the unpredictable timeline of dying. Care workers relied on themselves and their improvisation, but experienced self-blame for inadequate care and unexpected challenges in communication. Blurred boundaries in relation to therapeutic relationships were apparent, and care workers felt alone with emotional burden, but also found belonging and joy in their work.

Conclusion: Care workers' experiences are vital to understanding the barriers and challenges in providing culturally appropriate end-of-life care. Care workers repeatedly experienced an emotional burden and vicarious trauma throughout their work in this field. Care workers were self-reliant in all aspects of care including communication and consistently desired education, training, resources and support. There remains inadequate research on care workers and their role within the Australian healthcare context.

Implications for the profession and/or patient care: Care workers need access to support and resources including professional translators to provide culturally appropriate end-of-life care. Workplaces and registered nurses should facilitate training and provide guidance to care workers. A person-centred approach is required during all client encounters while maintaining appropriate therapeutic relationships including therapeutic use of self and professional boundaries.

Reporting method: COREQ Checklist.

Patient or public contribution: During this study, care workers were interviewed on their experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care. Patients were not directly involved within this study, but their views may have been expressed through the care workers' experience.

Keywords: caregivers; culturally competent care; culture; death; hospice and palliative care nursing; nursing assistants; palliative care; qualitative research; terminal care.