Talking about end-of-life care: the perspectives of older South Asians living in East London Journal of Research in Nursing

The National End-of-life Care Strategy for England identifies that a lack of open discussion about death and dying can be a barrier to achieving good quality end-of-life care. South Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their attitudes and expectations towards the discussion of death and dying. In this study, set in East London, five focus groups and 29 in-depth, semistructured interviews were conducted with total of 55 older adults aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited from 11 local community organisations. Constructive grounded theory was used as data analysis approach. Findings revealed two key themes which capture the perspectives older South Asian study participants had towards end-of-life care discussions. The theme ‘avoidance as a cultural norm’ relates to the relative absence of discussions around death and dying experienced participants. Participants neither expected to have discussions about their own death and dying within their family, nor to assume any involvement in related issues of decision making. The second theme ‘avoidance as protection’ relates to beliefs and experiences about the delegation of decision making to family members. Future research should explore the perspectives of second-generation adult children towards end-of-life care discussions

Understanding the meaning of end-of-life discussions and related decisions among older South Asians living in East London: a qualitative inquiry

Background - South Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their perspectives and experiences on end of life and its related care. Aim - This paper examines attitudes and expectations that older South Asians expressed towards the discussion of death and dying and decision making. Methods - Five focus groups and 29 in-depth, semi-structured interviews were conducted with total of 55 older adults aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited from 11 local community organisations. Constructive grounded theory was used as data analysis approach. Findings - Trust is category that captured views and experiences of participants that consists two key themes. The theme ‘avoidance of discussion’ relates to the relative absence of discussions around death and dying among participants. Participants neither expected to have discussions about their own death and dying within their family, nor to assume any involvement in related issues of decision making. The second theme ‘locus of authority’ relates to beliefs and experiences about the delegation of decision making to family members. Conclusion - Older South Asians living in East London make efforts to adhere to important social and cultural values relating to death and dying, and rebuild and adapt those values during the challenges of living in an emigrant society. Future research should explore the perspectives of second-generation adult children towards end of life care decisions