Adams Sherri, Nicholas David, Mahant Sanjay, Weiser Natalie, Kanani Ronik, Boydell Katherine, Cohen Eyal
The Hospital for Sick Children, Toronto, Ontario, Canada.
University of Toronto, Toronto, Ontario, Canada.
Dev Med Child Neurol. 2017 Dec;59(12):1299-1306. doi: 10.1111/dmcn.13576. Epub 2017 Oct 6.
Children with medical complexity require multiple providers and services to keep them well and at home. A care map is a patient/family-created diagram that pictorially maps out this complex web of services. This study explored what care maps mean for families and healthcare providers to inform potential for clinical use.
Parents (n=15) created care maps (hand drawn n=10 and computer-generated n=5) and participated in semi-structured interviews about the process of developing care maps and their perceived impact. Healthcare providers (n=30) reviewed the parent-created care maps and participated in semi-structured interviews. Data were analysed for themes and emerging theory using a grounded theory analytical approach.
Data analysis revealed 13 overarching themes that were further categorized into three domains: features (characteristics of care maps), functions (what care maps do), and emerging outcomes (benefits of care map use). These domains further informed a definition and a theoretical model of how care maps work.
Our findings suggest that care maps may be a way of supporting patient- and family-centred care by graphically identifying and integrating experiences of the family as well as priorities for moving forward.
Care maps were endorsed as a useful tool by families and providers. They help healthcare providers better understand parental priorities for care. Parents can create care maps to demonstrate the complex burden of care. They are a unique visual way to incorporate narrative medicine into practice.
患有复杂疾病的儿童需要多个医疗服务提供者和多种服务来维持健康并居家生活。护理地图是由患者/家庭绘制的图表，以直观的方式描绘出这一复杂的服务网络。本研究探讨了护理地图对家庭和医疗服务提供者的意义，以为其临床应用潜力提供参考。
15名家长绘制了护理地图（手绘10份，计算机生成5份），并参与了关于护理地图绘制过程及其感知影响的半结构化访谈。30名医疗服务提供者查看了家长绘制的护理地图，并参与了半结构化访谈。采用扎根理论分析方法对数据进行主题和新兴理论分析。
数据分析揭示了13个总体主题，这些主题进一步分为三个领域：特征（护理地图的特点）、功能（护理地图的作用）和新兴结果（使用护理地图的益处）。这些领域进一步明确了护理地图工作方式的定义和理论模型。
我们的研究结果表明，护理地图可能是一种支持以患者和家庭为中心的护理的方式，通过以图形方式识别和整合家庭的经历以及未来的优先事项。
护理地图得到了家庭和医疗服务提供者的认可，是一种有用的工具。它们有助于医疗服务提供者更好地理解家长的护理优先事项。家长可以绘制护理地图以展示护理的复杂负担。它们是将叙事医学融入实践的一种独特的可视化方式。
