Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Hawke's Bay District Health Board, Hawke's Bay, New Zealand.
Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
Am J Kidney Dis. 2015 Mar;65(3):451-63. doi: 10.1053/j.ajkd.2014.10.020. Epub 2015 Jan 10.
Although home hemodialysis (HD) is associated with better survival compared with hospital HD, the burden of treatment may be intensified for patients and their caregivers and deter patients from this treatment choice. We describe patient and caregiver perspectives and experiences of home HD to inform home HD programs that align with patient preferences.
Systematic review of qualitative studies.
SETTING & POPULATION: Adults with chronic kidney disease and caregivers of both home and hospital dialysis patients who expressed opinions about home HD.
SEARCH STRATEGY & SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL, and reference lists were searched to October 2013.
Thematic synthesis.
24 studies involving 221 patients (home HD [n=109], hospital HD [n=97], and predialysis [n=15]) and 121 caregivers were eligible. We identified 5 themes: vulnerability of dialyzing independently (fear of self-needling, feeling unqualified, and anticipating catastrophic complications), fear of being alone (social isolation and medical disconnection), concern of family burden (emotional demands on caregivers, imposing responsibility, family involvement, and medicalizing the home), opportunity to thrive (re-establishing a healthy self-identity, gaining control and freedom, strengthening relationships, experiencing improved health, and ownership of decision), and appreciating medical responsiveness (attentive monitoring and communication, depending on learning and support, developing readiness, and clinician validation).
Non-English articles were excluded.
Patients and caregivers perceive that home HD offers the opportunity to thrive; improves freedom, flexibility, and well-being; and strengthens relationships. However, some voice anxiety and fear about starting home HD due to the confronting nature of the treatment and isolation from medical and social support. Acknowledging and addressing these apprehensions can improve the delivery of predialysis and home HD programs to better support patients and caregivers considering home HD.
尽管与医院血液透析相比，家庭血液透析（HD）与更好的生存率相关，但对于患者及其照顾者而言，治疗负担可能会加重，并使患者望而却步。我们描述了患者和照顾者对家庭 HD 的看法和体验，以提供有关符合患者偏好的家庭 HD 计划的信息。
定性研究的系统评价。
患有慢性肾病的成年人及其家庭和医院透析患者的照顾者，他们对家庭 HD 表达了意见。
截至 2013 年 10 月，检索 MEDLINE、EMBASE、PsycINFO、CINAHL 和参考文献列表。
主题综合。
共有 24 项研究纳入 221 名患者（家庭 HD [n=109]、医院 HD [n=97]和透析前 [n=15]）和 121 名照顾者。我们确定了 5 个主题：独立透析的脆弱性（自我针刺的恐惧、感觉不合格和预期灾难性并发症）、独处的恐惧（社会孤立和医疗脱节）、家庭负担的担忧（照顾者的情感需求、强加责任、家庭参与和家庭化）、茁壮成长的机会（重新建立健康的自我认同、获得控制和自由、加强关系、改善健康和拥有决策）和欣赏医疗反应性（细心监测和沟通、依赖学习和支持、发展准备和临床医生验证）。
排除了非英文文章。
患者和照顾者认为家庭 HD 提供了茁壮成长的机会；提高了自由度、灵活性和幸福感；并加强了关系。然而，由于治疗的挑战性和与医疗和社会支持的隔离，一些人对开始家庭 HD 感到焦虑和恐惧。承认和解决这些担忧可以改善透析前和家庭 HD 计划的提供，以更好地支持考虑家庭 HD 的患者和照顾者。
