Brilliant palliative care : partnering with culturally diverse communities using participatory visual methods

Abstract

Background: Approximately 20% of the Northern Adelaide population are from non-English speaking backgrounds – this represents a larger community of culturally and linguistically diverse people when compared to the rest of South Australia. Palliative care benchmarking data show that people of diverse cultural backgrounds are not representative of the population. A report commissioned by Palliative Care Australia further highlights a range of barriers that hinder access to palliative care services for people of culturally diverse backgrounds. Despite the importance of culturally-appropriateness, palliative care does not always meet changing needs and preferences Palliative care for these communities is often plagued by myriad barriers and issues. Objectives: Rather than add to the discourse on all that is wrong with palliative care, this study purposely aimed to establish what constitutes brilliant palliative care for these communities. Brilliant palliative care is understood to be that which exceeds expectation, bringing joy and delight to those who experience or witness it. Design and/or Method: This qualitative study was underpinned by positive organisational scholarship and Merten’s transformative research approach. The study involved reflexive discussions with leaders of culturally and linguistically diverse communities. The focus of these discussions was video footage of palliative care in acute services, particularly that which clinicians, patients, and carers (who were not part of the aforesaid communities) deemed to be brilliant. Results: Collectively, African (8), Syrian (3),and Nepalese (7) indicated that culturally brilliant palliative care involves: respect for cultural norms, while challenging taboos; the aptitude to step in, not back; as well as engagement with pre-existing compassionate communities. Conclusion: Leveraging visual data from a previous study and working together with community leaders led to co-produced films to raise the pro-file of culturally brilliant palliative care. These were tailored for different audiences including communities themselves and disseminated via different avenues.