Careworker experiences in cultural end-of-life care

An article written by Elizabeth Lambert

End-of-life care is deeply personal and can vary greatly across cultural backgrounds. Careworkers in all care settings including residential aged care and home care settings often face challenges in supporting people from culturally and linguistically diverse (CALD) communities during this sensitive time. A recent study explores careworker experiences, highlighting the emotional and professional complexities faced by careworkers in Australia. [1]

Understanding the experience of care workers
This study aimed to understand the lived experiences of 11 care workers from the Australian Capital Territory who cared for individuals from CALD backgrounds during end-of-life care. Using interpretative phenomenological analysis, three main themes emerged:
 

1. Navigating cultural shock and death
   Careworkers often found themselves facing unexpected cultural differences. Careworkers continually demonstrated their efforts to embrace and meet the cultural needs of each individual, despite often not having organizational support. Many navigated unfamiliar death practices and rituals, highlighting the challenges in meeting cultural needs, particularly around the unpredictable timeline of dying. As one participant reflected, ‘I tried to get into their shoes and their culture,’ but it wasn’t always easy. Many careworkers expressed they wished they had the same cultural training as their registered nurse colleagues.
    
2. The hard work of communication
   Communication was a consistent hurdle, as careworkers frequently dealt with language barriers and cultural misunderstandings. Careworkers tried to overcome communication barriers but were often not provided or aware how to access professional translators. Many care workers were left to improvise and even learn the language of their client to improve the care they could provide. The lack of resources and support often led to feelings of frustration.
    
3. Searching for deeper connections 
   Despite the struggles, care workers expressed a desire to connect more deeply with their clients. They reported moments of personal reflection and growth but also dealt with blurred boundaries in their professional relationships. Careworkers often referring to their clients as their ‘grandparents’ demonstrating the deep care they provided in their work but also the blurring of professional boundaries. The emotional toll was significant, with many feeling a deep sense of isolation. Immense grief and vicarious trauma around the death of their client was identified in many of the participants. Additionally, careworkers reported that were subjected to racism during the care they provided. Despite all the challenges, careworkers consistently reported a sense of belonging and joy in their work.

Key study takeaways

• Cultural challenges: Careworkers were unsupported to meet cultural expectations during the dying process.
• Communication barriers: Language differences posed significant challenges, and workers often felt unprepared to address them.
• Emotional burden: Workers experienced emotional strain and self-blame but also found meaning and joy in their work.
• Need for support: Workers frequently expressed the need for more education, training, and access to professional translators to provide better care.

Implications for practice
This study highlights the critical need for better support systems for careworkers. Improved access to training, resources, and guidance from registered nurses can significantly enhance the quality of care provided to CALD patients. Fostering a person-centred approach, while maintaining appropriate professional boundaries, is essential to delivering compassionate and culturally sensitive end-of-life care.

In summary, careworkers play an invaluable role in providing culturally appropriate end-of-life care but face significant challenges. Addressing these gaps can lead to better outcomes for both workers and the people they care for.

Authors

Elizabeth Lambert

Clinical Nurse 

RN, BN(Hons) 

Reference

1. Lambert E, Gibson J, Bail K. 'I tried to get into their shoes and their culture'. Care worker experiences in cultural end-of-life care: Interpretative phenomenological analysis. J Clin Nurs. 2024 Jun 17. doi: 10.1111/jocn.17314.