Taylor Matthew J, Hanson Camilla S, Casey Jordan R, Craig Jonathan C, Harris David, Tong Allison
Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Hemodial Int. 2016 Jan;20(1):5-14. doi: 10.1111/hdi.12340. Epub 2015 Jul 22.
The success of hemodialysis depends on functional vascular access but such an invasive, semipermanent intervention can be confronting for patients. Vascular access complications are potentially life threatening and reduce treatment satisfaction and quality of life. This study aims to describe patient perspectives on vascular access. Face-to-face, semistructured interviews were conducted with 26 adult patients receiving hemodialysis with any form of vascular access at two dialysis units in Australia. The transcripts were analyzed using thematic analysis. We identified five major themes describing patient perspectives on vascular access: developing mental fortitude for access (accepting necessity for survival, self-advocacy, experiential confidence and competency, dependency on others, gaining vascular knowledge), device intrusiveness on the body (restricting normal function, finding compensatory solutions, bodily invasion, confronting appearance), inhibiting pain (aversion to surgery, persisting needle anxieties), exposure to dire health consequences (resigning to inevitable failure, anticipating serious complications, technological skepticism, wary of medical incompetence), and imposing burdens (generating additional expenses, encumbering family members). Patients with a vascular access rely on a precarious lifeline, which is confronting, intrusive, and burdensome. Some develop mental resilience to cope with the pain and invasiveness of vascular access. The results suggest that more attention to address needle anxieties, self-advocacy, lifestyle disruption, fear of complications, and concern for caregiver burden may improve treatment satisfaction and outcomes for patients on hemodialysis.
血液透析的成功依赖于功能性血管通路，但这种侵入性的半永久性干预措施可能会让患者感到难以面对。血管通路并发症可能危及生命，并会降低治疗满意度和生活质量。本研究旨在描述患者对血管通路的看法。在澳大利亚的两个透析单位，对26名接受任何形式血管通路血液透析的成年患者进行了面对面的半结构化访谈。采用主题分析法对访谈记录进行了分析。我们确定了五个主要主题来描述患者对血管通路的看法：培养面对通路的心理韧性（接受生存的必要性、自我主张、经验性的信心和能力、对他人的依赖、获取血管知识）、装置对身体的侵入性（限制正常功能、寻找补偿性解决方案、身体入侵、面对外观问题）、抑制疼痛（厌恶手术、持续存在的针头焦虑）、面临严重健康后果（接受不可避免的失败、预期严重并发症、对技术持怀疑态度、对医疗无能感到警惕）以及带来负担（产生额外费用、给家庭成员带来负担）。拥有血管通路的患者依赖于一条不稳定的生命线，这条生命线令人难以面对、具有侵入性且负担沉重。一些患者培养出心理韧性来应对血管通路带来的疼痛和侵入性。结果表明，更多地关注解决针头焦虑、自我主张、生活方式干扰、对并发症的恐惧以及对照顾者负担的担忧，可能会提高血液透析患者的治疗满意度和治疗效果。
