The Interface Between South Asian Culture and Palliative Care for Children, Young People, and Families—a Discussion Paper

Abstract

A fundamental element of quality healthcare is that provision is accessible to all users and culturally sensitive to them. However, there is evidence to suggest that there is inequity of provision across all cultures. Furthermore, there is a paucity of published research in the United Kingdom concerning palliative care for minority ethnic families with a life-threatened or life-limited child or young person. The article sets out to discuss the findings of a literature review and, drawing on current work by the Centre for Children and Families Applied Research at Coventry University under the leadership of Professor Jane Coad, to explore the interface between South Asian cultures and the experience of palliative care services of children, young peoples, and families. All families require a broad range of services which are appropriately delivered and accessible throughout the trajectory of their child's illness. The literature review findings reveal that how families understand concepts such as health and disease arise from the complex interaction between personal experience and cultural lifestyle including language, family values, and faith. There is an urgent need to involve South Asian families in research in order to provide a robust evidence-base on which to develop service provision so that care is matched to the unique needs of individuals concerned.

A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review

“…It is well documented that the engagement of family caregivers when providing spiritual and religious care within PC contexts is underutilized. This review highlights how familial understandings of concepts such as health and disease are based on personal experience and cultural factors such as language, family values and faith [ 7 ]. According to Edwards et al [ 8 ], familial relationships form an integral part of meeting spiritual needs, particularly when patients are spiritually distressed when dealing with their terminal condition.…”

“…HCPs must consider the varying cultural identities of family caregivers and the role that they play within the context of the dying process in order to provide more sensitive care [ 51 ]. The literature concludes that developing service provision that matches unique individual needs, crucially involves family members in the EoL care process [ 7 ].…”

“…A spiritual group is characterized in terms of religious, spiritual and faith-based beliefs and practices. Key barriers to EoL care include: cultural differences between healthcare providers (HCPs) and persons approaching EoL, patients and families [ 5 ]; under-utilization of culturally-sensitive models designed for improved EoL care [ 6 ]; language barriers [ 7 ]; lack of awareness of cultural and spiritual diversity issues; exclusion of families in the decision-making process [ 8 ]; personal racial and religious discrimination [ 9 ] and lack of culturally-tailored EoL information to facilitate decision-making and uptake of care for culturally- and spiritually-diverse communities [ 9 ]. These factors indicate the centrality of Western bioethics whereby EoL decision-making and care delivery are shaped by spirituality, religion and culture as well as the beliefs of individuals, families, communities and other social structures within these groups.…”

Cultural and Religious Diversity in Hospice and Palliative Care: A Qualitative Cross-Country Comparative Analysis of the Challenges of Health-Care Professionals

“…However, the authors’ (Pentaris, 2016; Thomsen, 2014) previous studies in Denmark and in the United Kingdom, respectively, found that in practice, professionals are still requesting culture-specific knowledge irrespective of their awareness of individual variation. Brown, Patel, Kaur, and Coad (2013) opine that professional skills, confidence, and information must be built along with the creation of flexible organizational structures. This is also highlighted by Huang, Yates, and Prior (2009).…”

A concept analysis in relation to the cultural competency of the palliative care workforce in meeting the needs of young people from South Asian cultures

“…Ethnicity and culture affect the ways in which people understand and experience health, illness, suffering and bereavement (Kofman & Lukes 2012, Brown et al 2013. Baggerley & Abugideiri (2010) suggest that in some South Asian communities, palliative care may be perceived as 'giving up hope' and in the case of families with children, that parents have neglected to 'protect' their child.…”