Walker Rachael C, Walker Curtis, Reynolds Annie, Haselden Rachel, Hay Sandra, Palmer Suetonia C
Faculty of Medicine and Health Science, School of Nursing, University of Auckland, New Zealand.
Department of Medicine, Te Whatu Ora, Palmerston North, New Zealand.
Perit Dial Int. 2024 May;44(3):185-193. doi: 10.1177/08968608231202899. Epub 2023 Oct 11.
People treated with home dialysis report social and emotional isolation, fear of catastrophic events and concern about being a burden. There is a paucity of research exploring psychological well-being among consumers dialysing at home. We aimed to explore the psychological health issues related to home dialysis, and how these issues may impact on sustaining home-based treatment.
We conducted a qualitative interview study with 36 consumers. We included patients with experience of home dialysis and caregivers. Thirteen participants had experienced peritoneal dialysis, seven home haemodialysis, seven had experienced both and nine caregivers. Data were analysed inductively to generate themes and a conceptual framework.
We identified four themes and subthemes: overwhelming isolation and disconnection (devastating isolation of home dialysis; abandoned from support; escalating anxiety; compounding impact of feeling like a burden); importance of support systems (impact on relationships; need for emotional support; reassurance through shared experiences; valuing trustworthy and committed clinicians); burden of distress (individualised feelings of low mood; grappling with stigma surrounding diagnosis; contemplating treatment withdrawal and suicide); seeking mental health support (normalising mental health support as a distinct entity in dialysis care; overcoming barriers to seeking mental health support; additional tools for mental health support and connection).
Consumers may experience intense psychological distress during home-based dialysis care. Increasing clinician and health services literacy about the management of psychological impacts of home-based dialysis may improve consumer safety, quality of life and sustainability of home treatment.
接受家庭透析治疗的患者表示存在社交和情感孤立、对灾难性事件的恐惧以及对成为他人负担的担忧。目前鲜有研究探讨居家透析患者的心理健康状况。我们旨在探究与家庭透析相关的心理健康问题，以及这些问题如何影响家庭透析治疗的持续进行。
我们对36名患者进行了定性访谈研究。研究对象包括有家庭透析经历的患者及其照护者。其中13名参与者有腹膜透析经历，7名有家庭血液透析经历，7名两者都有过，还有9名照护者。对数据进行归纳分析以生成主题和概念框架。
我们确定了四个主题及子主题：极度孤立与脱节（家庭透析带来的毁灭性孤立；被支持体系抛弃；焦虑不断升级；觉得自己是负担的复合影响）；支持系统的重要性（对人际关系的影响；情感支持的需求；通过共同经历获得安心；重视值得信赖且尽责的临床医生）；痛苦的负担（个体化的情绪低落感；与疾病诊断相关的耻辱感作斗争；考虑停止治疗和自杀）；寻求心理健康支持（将心理健康支持作为透析护理中一个独特实体加以常态化；克服寻求心理健康支持的障碍；心理健康支持及联系的额外工具）。
在家庭透析治疗过程中，患者可能会经历强烈的心理痛苦。提高临床医生和医疗服务机构对家庭透析心理影响管理的认知，可能会提高患者安全性、生活质量以及家庭治疗的可持续性。
