Introduction: Given longstanding barriers that obstruct integrated palliative care, particularly for culturally and linguistically diverse communities, this article demonstrates a way to engage with Syrian, Bhutanese and African communities to learn about brilliant palliative care with and from members of these communities.
Methods: This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). Members of the Syrian, Bhutanese, and African communities (n = 14) participated in a focus group or an interview to consider understandings of palliative care; conceptualisations of a good death; how and why palliative care was typically enacted in their communities; the associated effects; as well as the relationship between culturally and linguistically diverse communities and public palliative care services. Discussions were aided by video recordings captured during the previous study on brilliant palliative care, which participants were invited to review. Video recordings and transcripts of the focus groups and interview were analysed using reflexive thematic analysis.
Results: The participants demonstrated considerable variability in the ways that palliative care was understood and enacted. For some, death was a taboo topic, while for others, it was a reality that was required to face, particularly in war-torn regions. Similarly, while doctors were held in high regard, participants held different views about how they should enact palliative care and the anticipation of death, particularly because family members were deemed to be a pivotal part of palliative care. To improve the care of people of culturally and linguistically diverse communities who experience a life-limiting illness, participants highlighted three opportunities. These included the avoidance of generalisations, prioritising the needs and preferences of cultural groups, and leveraging the community network.
Conclusion: This study demonstrated how reciprocal understandings of palliative care were potentiated using POSH-VRE. Specifically, the members of the Bhutanese, African and Syrian communities demonstrated diversity in the needs, preferences, and customs of culturally and linguistically diverse communities. As such, integrated palliative care is likely to be bolstered by relinquishing assumptions about how cultural groups wish to be referred to and cared for and adopting a public health approach to palliative care that embraces both a population-based and person-centred approach to care.
Patient Or Public Contribution: Members of the Bhutanese, African and Syrian communities contributed to this study as participants and co-researchers, contributing to the analysis and interpretation of the data and in the preparation of the article.
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http://dx.doi.org/10.1111/hex.70089 | DOI Listing |
JAMA Intern Med
January 2025
Pulmonary, Critical Care, Allergy, and Sleep Medicine, the University of California, San Francisco.
Cureus
December 2024
Cardiology, St. George's University School of Medicine, Port St. Lucie, USA.
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December 2024
Research, Orlando College of Osteopathic Medicine, Winter Garden, USA.
Dame Cicely Saunders was a pioneer in palliative care and the founder of the modern hospice movement. Her visionary work, particularly in establishing St. Christopher's Hospice in 1967, reshaped the way healthcare professionals approach the care of patients with life-limiting illnesses.
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December 2024
Cardiology, Lower Bucks Hospital, Bristol, USA.
This case report presents a 37-year-old male with a complex medical history, including HIV, chronic methamphetamine and cocaine use, and an atrial septal defect, who developed severe pulmonary arterial hypertension (PAH), biventricular failure, and recurrent stroke. The patient was admitted with acute neurological deficits and respiratory failure, which rapidly progressed despite intensive management. Laboratory and imaging studies revealed severe cardiac dysfunction and elevated pulmonary vascular resistance.
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