"It Doesn't Exist…": Negotiating Palliative Care from a Culturally and Linguistically Diverse Patient and Caregiver Perspective

Overview

Journal BMC Palliat Care

Publisher Biomed Central

Specialty Critical Care

Date 2018 Jul 4

PMID 29966521

Citations 18

Authors

Emma Kirby

Zarnie Lwin

Katherine Kenny

Alex Broom

Holi Birman

Phillip Good

Affiliations

Soon will be listed here.

Abstract

Background: The 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.

Methods: A 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.

Results: Sixteen 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.

Conclusions: CALD 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.

Citing Articles

Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation.

Dadich A, Crawford G, Laintoll P, Zangre I, Dahal K, Albrezi D Health Expect. 2024; 27(6):e70089.

PMID: 39494853 PMC: 11533138. DOI: 10.1111/hex.70089.

Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review.

Aker N, Griffiths S, Kupeli N, Frost R, Nair P, Walters K BMC Palliat Care. 2024; 23(1):228.

PMID: 39289662 PMC: 11406721. DOI: 10.1186/s12904-024-01555-8.

Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory.

De Souza J, Gillett K, Salifu Y, Walshe C BMC Palliat Care. 2024; 23(1):176.

PMID: 39026241 PMC: 11256641. DOI: 10.1186/s12904-024-01503-6.

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

Lambert E, Gibson J, Bail K J Clin Nurs. 2024; 34(3):959-977.

PMID: 38886985 PMC: 11808433. DOI: 10.1111/jocn.17314.

The (un)caring experienced by racialized and/or ethnoculturally diverse residents in supportive living: a qualitative study.

Chamberlain S, Salma J, Tong H, Savera , Wu J, Gruneir A BMC Geriatr. 2024; 24(1):78.

PMID: 38245697 PMC: 10800051. DOI: 10.1186/s12877-023-04636-0.

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