Kimmitt Robert A, Snead Charlotte M, Rooshenas Leila, Caskey Fergus J, Coast Joanna, Morton Rachael L, Quartermaine Peter, Quartermaine Luisa, Selman Lucy E, Hole Barnaby
Exeter Kidney Unit, Royal Devon University Healthcare NHS Foundation Trust, Barrack Road, Exeter, UK.
Clinical and Biomedical Sciences, University of Exeter, Exeter, EX2 4TH, UK.
BMC Nephrol. 2025 Jul 9;26(1):368. doi: 10.1186/s12882-025-04275-0.
Chronic kidney disease (CKD) is increasingly common amongst frail older patients with multiple health problems. These patients typically decide between kidney replacement therapy (KRT) with dialysis, which carries uncertain survival benefit with significant treatment burden, and conservative kidney management (CKM). A person-centred approach to this shared decision-making process is advocated. Family members are known to be important in these decisions. Nonetheless, data exploring family member perspectives are limited. We aimed to explore how older, frail and/or comorbid patients with CKD and their family members understand and approach decision-making regarding treatments for kidney failure.
Semi-structured interviews were conducted, in person, in 2018-2019, with older patients with advanced CKD (≥ 80 years or ≥ 65 with evidence of frailty or comorbidity) and at least one family member per patient. Interview transcripts were analysed using inductive thematic analysis with constant comparison within and between family units. Meanings and concepts were discussed between study investigators, to generate a coding framework and develop major themes.
Ten patients and 12 associated family members were interviewed. Three major themes were identified: (1) "whose decision is it anyway?" concerns ownership of treatment decisions; (2) "on death, dying and uncertain futures" describes relational elements of participants' thoughts of the future; and (3) "caring and being cared for" explores the importance of physical and emotional caring roles and love and care in relationships.
Family members appear to have significant influence on older patients' kidney failure treatment decisions, which can occur outside the shared decision-making support offered to patients. The inextricably intertwined daily lives of co-habiting patients and family members means that treatment decisions impact and depend upon both family members and patients. Kidney services should adopt a 'family-centred' (rather than individually 'person-centred') approach to decision-making support and must develop ways to embed this in clinical practice.
慢性肾脏病（CKD）在体弱多病且存在多种健康问题的老年患者中越来越常见。这些患者通常需要在肾脏替代治疗（KRT）（透析）和保守肾脏管理（CKM）之间做出决定，透析带来的生存益处不确定且治疗负担重。倡导采用以患者为中心的方法进行这种共同决策过程。已知家庭成员在这些决策中很重要。尽管如此，探索家庭成员观点的数据有限。我们旨在探讨老年、体弱和/或合并症的CKD患者及其家庭成员如何理解和处理关于肾衰竭治疗的决策。
2018 - 2019年对晚期CKD老年患者（≥80岁或≥65岁且有虚弱或合并症证据）及每位患者至少一名家庭成员进行了面对面的半结构化访谈。访谈记录采用归纳主题分析法进行分析，在家庭单位内部和之间进行持续比较。研究人员之间讨论了意义和概念，以生成编码框架并形成主要主题。
访谈了10名患者和12名相关家庭成员。确定了三个主要主题：（1）“到底是谁的决定？”涉及治疗决策的所有权；（2）“关于死亡、临终和不确定的未来”描述了参与者对未来想法中的关系要素；（3）“关爱与被关爱”探讨了身体和情感关爱角色以及关系中爱与关怀的重要性。
家庭成员似乎对老年患者的肾衰竭治疗决策有重大影响，这种影响可能发生在为患者提供的共同决策支持之外。同居患者和家庭成员紧密交织的日常生活意味着治疗决策既影响家庭成员也依赖于他们。肾脏服务应采用“以家庭为中心”（而非单独的“以患者为中心”）的方法来提供决策支持，并且必须开发将其融入临床实践的方法。
