Wilkinson Emma, Randhawa Gurch, Brown Edwina A, Da Silva Gane Maria, Stoves John, Warwick Graham, Akhtar Tahira, Magee Regina, Sharman Sue, Farrington Ken
Institute for Health Research and Institute of Diabetes for Older People, University of Bedfordshire, Luton, UK.
J Ren Care. 2014 Sep;40 Suppl 1:23-9. doi: 10.1111/jorc.12084.
South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues.
与欧洲白人相比，南亚人患肾病的风险更高，在需要肾脏替代治疗的患者群体中所占比例过高，并且等待肾脏移植的时间更长。因此，对临终关怀的需求应运而生，这种关怀要满足这一患者群体的需求。为来自不同文化背景的患者提供临终关怀对肾脏服务来说是一项挑战，因为可能存在语言、家庭内部委托决策以及不愿谈论死亡等形式的沟通障碍。为了探索针对患有肾病的南亚人的临终关怀，在英国有大量南亚人口的四个研究地点，对16名患者进行了访谈，并与护理人员进行了14次焦点小组讨论。采用行动研究设计，对数据进行了主题分析，并以循环方式反馈以指导研究。如果患者不完全了解自己的病情或临终关怀是什么，他们就不太可能参与有关自身护理的决策，而在存在沟通障碍的情况下，这种情况会更加复杂。反过来，护理人员对为南亚患者提供临终关怀的认识和经验的差异，也导致患者对临终关怀缺乏认识。应进一步探索将沟通作为临终关怀的方式。对南亚患者临终体验的研究凸显了许多相关且具有普遍意义的问题。
