Perceptions of palliative care in a South Asian community: findings from an observational study

Abstract

Background Patients often view “palliative care” (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations. Methods This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings. Results Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (≥ 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services. Conclusions Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations.

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“…As such, to introduce all learners to palliative care, clinical education must be strengthened. Our results support the role of specialist palliative care practitioners [10]. This perspective may lead to the heterogeneity of comprehension of palliative care, affecting the perceptions and use of those patients and families that require it.…”

“…In one report, they found that the national health policy should pay due attention to the PC and that it needs to be integrated into the national nursing education curriculum [9][10]. Some studies have also found that palliative care is about caring for and maintaining comfort for people who die in the last days of life.…”

“…The IAPC organised its first international conference in Varanasi in January 1994 (with the assistance of the WHO and the Government of India) and adopted a constitution [9][10].…”

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“…Furthermore, cultural preferences and structural differences in care provision influence PPC outcomes [ 16 ]. Culture, social norms and religious affiliations determine the perception, acceptance, enrollment and implementation of palliative care services [ 17 ].…”

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“…Understanding these will allow nurses to provide culturally competent and safe care. 3,14,[27][28][29] Lack of knowledge about ACP and its benefits prevents many AIAHs from planning ACP. Dosani et al 27 found from their observational study of 34 Canadian South Asian adults that a lack of knowledge about palliative care existed among 70% of participants.…”