• BMC palliative care · Jul 2018

    "It doesn't exist…": negotiating palliative care from a culturally and linguistically diverse patient and caregiver perspective.

    • Emma Kirby, Zarnie Lwin, Katherine Kenny, Alex Broom, Holi Birman, and Phillip Good.
    • Practical Justice Initiative, Faculty of Arts and Social Sciences, University of New South Wales, Level 3 Goodsell Building, University of New South Wales, Sydney, NSW, 2052, Australia. Emma.kirby@unsw.edu.au.
    • BMC Palliat Care. 2018 Jul 2; 17 (1): 90.

    BackgroundThe end of life represents a therapeutic context that acutely raises cultural and linguistic specificities, yet there is very little evidence illustrating the importance of such dynamics in shaping choices, trajectories and care practices. Culture and language interplay to offer considerable potential challenges to both patient and provider, with further work needed to explore patient and caregiver perspectives across cultures and linguistic groups, and provider perspectives. The objective of this study was to develop a critical, evidence-based understanding of the experiences of people from Culturally and Linguistically Diverse (CALD) backgrounds, and their caregivers, in a palliative care setting.MethodsA qualitative study, using semi-structured interviews to explore key experiences and perspectives of CALD patients and caregivers currently undergoing treatment under oncology or palliative care specialists in two Australian hospitals. Interviews were digitally audio recorded and transcribed in full. A thematic analysis was conducted utilising the framework approach.ResultsSixteen patients and fourteen caregivers from a range of CALD backgrounds participated in semi-structured interviews. The research identified four prevalent themes among participants: (1) Terminology in the transition to palliative care; (2) Communication, culture and pain management; (3) (Not) Talking about death and dying; and, (4) Religious faith as a coping strategy: challenging the terminal diagnosis.ConclusionsCALD patients and caregivers' experiences are multifaceted, particularly in negotiating linguistic difficulties, beliefs about treatment, and issues related to death and dying. Greater attention is needed to develop effective communication skills, recognise CALD patients' particular cultural, linguistic and spiritual values and needs, and acknowledge the unique nature of each doctor-patient interaction.

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