Division of Nephrology and Hypertension, Department of Medicine, University of North Carolina (UNC) School of Medicine, Chapel Hill, NC, USA.
San Pablo, CA, USA.
Nephrol Dial Transplant. 2020 Aug 1;35(8):1426-1435. doi: 10.1093/ndt/gfaa018.
Dialysis care often focuses on outcomes that are of lesser importance to patients than to clinicians. There is growing international interest in individualizing care based on patient priorities, but evidence-based approaches are lacking. The objective of this study was to develop a person-centered dialysis care planning program. To achieve this objective we performed qualitative interviews, responsively developed a novel care planning program and then assessed program content and burden.
We conducted 25 concept elicitation interviews with US hemodialysis patients, care partners and care providers, using thematic analysis to analyze transcripts. Interview findings and interdisciplinary stakeholder panel input informed the development of a new care planning program, My Dialysis Plan. We then conducted 19 cognitive debriefing interviews with patients, care partners and care providers to assess the program's content and face validities, comprehensibility and burden.
We identified five themes in concept elicitation interviews: feeling boxed in by the system, navigating dual lives, acknowledging an evolving identity, respecting the individual as a whole person and increasing individualization to enhance care. We then developed a person-centered care planning program and supporting materials that underwent 32 stakeholder-informed iterations. Data from subsequent cognitive interviews led to program revisions intended to improve contextualization and understanding, decrease burden and facilitate implementation.
My Dialysis Plan is a content-valid, person-centered dialysis care planning program that aims to promote care individualization. Investigation of the program's capacity to improve patient experiences and outcomes is needed.
透析护理通常侧重于对患者不重要但对临床医生重要的结果。基于患者的优先事项来个性化护理的国际兴趣日益浓厚，但缺乏循证方法。本研究的目的是制定以患者为中心的透析护理计划方案。为了实现这一目标，我们进行了定性访谈，随后开发了一种新颖的护理计划方案，并评估了方案内容和负担。
我们对美国血液透析患者、护理伙伴和护理提供者进行了 25 次概念挖掘访谈，使用主题分析对转录本进行分析。访谈结果和跨学科利益相关者小组的意见为新的护理计划方案“我的透析计划”的制定提供了信息。然后，我们对 19 名患者、护理伙伴和护理提供者进行了认知性访谈，以评估该方案的内容和表面有效性、可理解性和负担。
我们在概念挖掘访谈中确定了五个主题：感觉被系统束缚、驾驭双重生活、承认不断变化的身份、尊重完整的个人、以及增加个体化以增强护理。然后，我们开发了一个以人为本的护理计划方案和配套材料，并进行了 32 次利益相关者知情的迭代。随后的认知访谈数据导致了旨在改善情境化和理解、减轻负担和促进实施的方案修订。
“我的透析计划”是一个内容有效的、以患者为中心的透析护理计划方案，旨在促进护理个体化。需要研究该方案改善患者体验和结果的能力。
