Exploring end-of-life care for South Asian kidney patients: interviewer reflections

Abstract

The reduction of inequalities in access to quality care has been a central tenet of UK health policy. Ethnic minorities may experience additional inequalities because of language and other cultural barriers. This article reports interviewer reflections of conducting interviews with South Asian kidney patients about their experiences of end-of-life care. It explores themes which emerged from the analysis of a focus group held with eight bilingual research interviewers. The relevance of these themes to understanding inequalities and access to end-of-life care is discussed; together with the potential for the research process to contribute to service improvement.

Palliative care for older South Asian migrants: A systematic review

“…The literature search revealed studies discussing both the formal (professional) and informal (family) practice of PC in the migrant families. Fourteen studies raised the concern about preferred place of death and receiving care (Chattoo and Ahmad, 2008; Coupland et al, 2011; Cowan, 2014; Khosla et al, 2016; Owens and Randhawa, 2004; Radhakrishnan et al, 2017; Randhawa and Owens, 2004; Shanmugasundaram and O'Connor, 2009; Sharma et al, 2012; Venkatasalu, 2017; Venkatasalu et al, 2014; Weerasinghe and Maddalena, 2016; Wilkinson, Waqar, et al, 2017; Worth et al, 2009). According to these studies, preference was dependent on the interplay of various factors, for example, finance (Venkatasalu et al, 2014), availability of caregivers at home (Cowan, 2014), mistrust in institutional care (Venkatasalu, 2017; Weerasinghe and Maddalena, 2016), and the opportunity to perform religious practices (Venkatasalu, 2017; Venkatasalu et al, 2014).…”

“…The need for building trusting relationships among healthcare providers (HPs) and migrant families was mentioned in ten studies (Ackroyd, 2003; Cowan, 2014; Doorenbos, 2003; Khosla et al, 2016; Khosla et al, 2017; Radhakrishnan et al, 2017; Venkatasalu, 2017; Venkatasalu et al, 2013; Wilkinson, Waqar, et al, 2017; Worth et al, 2009). Despite this, a lack of trusting relationships with migrant families and the HP were often reported (Cowan, 2014; Doorenbos, 2003; Venkatasalu, 2017).…”

“…It was revealed that often patients themselves were willing to discuss PC. However, they were not able to due to language barriers (Wilkinson, Waqar, et al, 2017). Older migrants were more likely to communicate in their own language although they could speak the language of the host country (Randhawa et al, 2003).…”

“…It was also challenging for the HP to access and manage an interpreter on short notice (Wilkinson et al, 2016; Worth et al, 2009). Unavailability of interpreters (Randhawa et al, 2003) or family restriction led relatives to act as interpreter (Wilkinson et al, 2014) to maintain family privacy (Khosla et al, 2017; Wilkinson, Waqar, et al, 2017). Often as an interpreter, relatives modified, omitted, or miscommunicated to withhold medical information to protect patients or vice versa (Randhawa et al, 2003; Worth et al, 2009).…”

The nurse as a change agent: addressing organ donation

“…South Asian patients wait, on average, twice as long for a kidney transplant as Caucasian patients. Caucasian patients wait on average 722 days, while Asian patients wait 1496 days (Wilkinson et al, 2017). Although South Asian patients gained access to the transplant waiting list at a similar rate to non-South Asians, due to the difficulties with tissue type matching they were unable to find appropriate donors (Jeffrey et al, 2002).…”