Time, timing, talking and training: findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients

Abstract

Background. With an ageing and increasingly diverse population at risk from rising levels of obesity, diabetes and cardiovascular disease, including kidney complications, there is a need to provide quality care at all stages in the care pathway including at the end of life and to all patients. Aim. This study purposively explored South Asian patients’ experiences of kidney end of life care to understand how services can be delivered in a way that meets diverse patient needs. Methods. Within an action research design 14 focus groups (45 care providers) of kidney care providers discussed the recruitment and analysis of individual interviews with 16 South Asian kidney patients (eight men, eight women). Emergent themes from the focus groups were analysed thematically.The research took place at four UK centres providing kidney care to diverse populations: West London, Luton, Leicester and Bradford. Results. Key themes related to time and the timing of discussions about end of life care and the factors that place limitations on patients and providers in talking about end of life care. Lack of time and confidence of nurses in areas of kidney care, individual attitudes and workforce composition influence whether and how patients have access to end of life care through kidney services. Conclusion. Training, team work and time to discuss overarching issues (including timing and communication about end of life) with colleagues could support service providers to facilitate access and delivery of end of life care to this group of patients.

Palliative care for older South Asian migrants: A systematic review

“…Nineteen studies identified the issue of communication between South Asian migrant patients/families and their HPs in PC (Ackroyd, 2003; Biondo et al, 2017; Doorenbos, 2003; Khosla et al, 2016; Khosla et al, 2017; Owens and Randhawa, 2004; Radhakrishnan et al, 2017; Randhawa and Owens, 2004; Randhawa et al, 2003; Shanmugasundaram and O'Connor, 2009; Sharma et al, 2012; Somerville, 2001; Venkatasalu et al, 2013; Weerasinghe and Maddalena, 2016; Wilkinson et al, 2016; Wilkinson, Randhawa, et al, 2017; Wilkinson et al, 2014; Wilkinson, Waqar, et al, 2017; Worth et al, 2009). Communication was identified as the key and most crucial factor in access to PC (Randhawa and Owens, 2004).…”

“…Therefore, relatives with knowledge of health-related issues could work as mediators between HPs and other family members (Weerasinghe and Maddalena, 2016). Although involving relatives facilitated communication between HPs and family members (Wilkinson, Randhawa, et al, 2017), communication barriers also existed within the patients’ family (Somerville, 2001). Relatives found it difficult to communicate the poor prognosis of the patient to other family members who knew less about the trajectory as a whole (Somerville, 2001).…”

“…Consensus was missing among HPs at different levels of PC concerning the proper time to start discussions on PC in the disease course and disclosure of illness to patients (Wilkinson et al, 2016). The misunderstandings were the result of time constraints, lack of confidence, skill, and cultural understanding in talking to patients and their families about PC (Radhakrishnan et al, 2017; Wilkinson et al, 2016; Wilkinson, Randhawa, et al, 2017). HPs with ethnicities other than South Asian ethnic backgrounds found it challenging to build emotional rapport with South Asian migrants due to a lack of knowledge about the culture (Owens and Randhawa, 2004).…”

“…Emma Wilkinson, Gurch Randhawa, Edwina Brown et al (2017), (Wilkinson, Randhawa, et al, 2017) To explore end-of-life care of South Asian kidney patients to provide services that can meet diverse patients' needs. Emma Wilkinson, Muhammad Waqar, Babir Gill et al, (2017), (Wilkinson, Waqar, et al, 2017) To report interviewer reflections on conducting interviews with South Asian kidney patients about their experiences with end-of-life care.…”

Approaches for enhancing patient-reported experience measurement with ethnically diverse communities: a rapid evidence synthesis

“…Evidence from the peer-reviewed literature indicated that patient experience data were often captured from individuals or families whilst in a clinical setting. In 49 studies, PREMs were captured while individuals were visiting, being admitted to, or discharged from, hospitals [ 14 – 17 , 21 , 23 , 25 , 29 , 31 , 33 , 36 , 37 , 44 , 49 , 51 , 52 , 54 , 60 , 62 , 63 , 65 , 68 , 73 , 76 , 81 , 82 , 94 – 96 ] or while individuals were visiting primary care clinics [ 18 – 20 , 26 , 30 , 38 , 42 , 43 , 54 , 58 , 59 , 69 , 70 , 75 , 78 , 97 – 102 ]. Thirty-one further studies reported PREMs being gathered via community and/or online environments.…”