Department of Management, Tilburg School of Economics and Management, Tilburg University, Tilburg, Noord-Brabant, The Netherlands.
Department of Tranzo, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, Noord-Brabant, The Netherlands.
PLoS One. 2020 Nov 16;15(11):e0242418. doi: 10.1371/journal.pone.0242418. eCollection 2020.
People with chronic conditions have complex healthcare needs that lead to challenges for adequate healthcare provision. Current healthcare services do not always respond adequately to their needs. A modular perspective, in particular providing visualization of the modular service architecture, is promising for improving the responsiveness of healthcare services to the complex healthcare needs of people with chronic conditions. The modular service architecture provides a comprehensive representation of the components and modules of healthcare provision. In this study, we explore this further in a qualitative multiple case study on healthcare provision for children with Down syndrome in the Netherlands.
Data collection for four cases involved 53 semi-structured interviews with healthcare professionals and 21 semi-structured interviews with patients (the parents of children with Down syndrome as proxy). In addition, we gathered data by means of practice observations and analysis of relevant documents. The interviews were audio-recorded, transcribed verbatim and analyzed utilizing the Miles and Huberman approach.
Our study shows that the perspectives on healthcare provision of professionals and patients differ substantially. The visualization of the modular service architecture that was based on the healthcare professionals' perspective provided a complete representation of (para)medical outcomes relevant to the professionals' own discipline. In contrast, the modular service architecture based on the patients' perspective, which we define as a person-centered modular service architecture, provided a representation of the healthcare service that was primarily based on functional outcomes and the overall wellbeing of the patients.
Our study shows that visualization of the modular service architecture can be a useful tool to better address the complex needs and requirements of people with a chronic condition. We suggest that a person-centered modular service architecture that focuses on functional outcomes and overall wellbeing, enables increased responsiveness of healthcare services to people with complex healthcare needs and provision of truly person-centered care.
患有慢性病的人有复杂的医疗需求，这给充分的医疗服务提供带来了挑战。当前的医疗服务并不总是能充分满足他们的需求。模块化视角，特别是提供模块化服务架构的可视化，有望提高医疗服务对慢性病患者复杂医疗需求的响应能力。模块化服务架构全面展示了医疗服务提供的组成部分和模块。在这项研究中，我们在荷兰对唐氏综合征儿童的医疗服务提供进行了定性的多案例研究，进一步探讨了这一点。
对四个案例的数据收集涉及与医疗保健专业人员进行的 53 次半结构化访谈和与患者（唐氏综合征儿童的父母作为代理人）进行的 21 次半结构化访谈。此外，我们还通过实践观察和分析相关文件收集数据。访谈进行了录音、逐字转录，并利用迈尔斯和休伯曼的方法进行了分析。
我们的研究表明，专业人员和患者对医疗服务提供的看法存在很大差异。基于医疗保健专业人员观点的模块化服务架构可视化提供了与专业人员自己学科相关的（辅助）医疗结果的完整表示。相比之下，基于患者观点的模块化服务架构，我们将其定义为以人为中心的模块化服务架构，提供了主要基于功能结果和患者整体幸福感的医疗服务表示。
我们的研究表明，模块化服务架构的可视化可以成为一种有用的工具，以更好地满足慢性病患者的复杂需求和要求。我们建议，关注功能结果和整体幸福感的以人为中心的模块化服务架构，能够提高医疗服务对复杂医疗需求人群的响应能力，并提供真正以患者为中心的护理。
