Living with dying: A narrative inquiry of people with chronic kidney disease and their family members Translated title: 与死亡同生:对慢性肾脏病患者及其家属的叙事研究

Abstract

Aims

To describe how people diagnosed with chronic kidney disease and their family members describe uncertainty related to impending death.

Background

There has been little research about the experiences of people with chronic kidney disease and their family members as they near the end‐of‐life. We need to understand these experiences to give holistic person‐centred care.

Design

A narrative enquiry was undertaken using a social constructionist perspective.

Methods

Data were collected in two in‐depth interviews, approximately 3–4 months apart, followed by a telephone follow‐up 2–3 months later.

Results

Eleven people with advanced chronic kidney disease and nine family members/significant others participated. For both participants in the dyad, a number of key themes/storylines were identified. These included recognition that: @life has a boundary, living on the edge, I'm not afraid to die but… and remembering loss and death experiences@ .

Conclusions

This enquiry illuminated four key storylines of about death and dying with advanced chronic kidney disease for people with the illness and their family members. Discussion about past experiences with illness, loss, death, and dying can give an entry for discussion about end‐of‐life. The person with illness and family members often held very similar perceptions and desires, but healthcare professionals’ contributions to understanding of the experience were not mentioned. Implications for clinicians include attending to peoples’ awareness of death as a distinct opportunity, listening attentively and posing questions that genuinely invite concerns and wishes about end–of‐life and living well.

Translated abstract

目的

探讨被诊断为慢性肾脏疾病的患者及其家属如何描述濒死的不确定性。

背景

少有研究慢性肾脏病患者及其家属在临近生命尽头时的经验。我们需要了解此类经验,给予患者完整的人为中心的照顾。

设计

采用社会建构论进行叙事研究。

方法

进行两次深度访谈,间隔3˜4个月,2˜3个月后,进行电话随访,由此收集数据

结果

11名晚期慢性肾脏病患者和9名家属或其他重要人员参与研究。以两位参与者为一组,确定了部分关键主题/故事情节。包括认识到: “生命有边界,生命悬于一线,我不怕害怕死亡,但……害怕记得失去和死亡的经历。”

结论

本研究揭示了晚期慢性肾脏病患者及其家属中有关死亡和濒死的四个关键故事线。讨论过去与疾病、失去、死亡和濒死有关的经验可以为讨论生命的终结奠定基础。患者和家属通常持有非常相似的看法和愿望,但没有提到医护专业人员对了解经验的贡献。对于临床医生而言,其含义包括关注人们对死亡的认识,将其视为一个独特的机会,认真倾听,提出问题,从而真正引起人们对生命终结和健康生活的关注和愿望。