Exploring views on medical care for people with intellectual disabilities: an international concept mapping study

Medical care for people with intellectual and developmental disabilities (IDD) is organized differently across the globe and interpretation of the concept of medical care for people with IDD may vary across countries. Existing models of medical care are not tailored to the specific medical care needs of people with IDD. This study aims to provide an improved understanding of which aspects constitute medical care for people with IDD by exploring how international researchers and practitioners describe this care, using concept mapping. Twenty-five experts (researchers and practitioners) on medical care for people with IDD from 17 countries submitted statements on medical care in their country in a brainstorming session, using an online concept mapping tool. Next, they sorted all collected statements and rated them on importance.
Participants generated statements that reflect current medical and health care practice, their ideas on good practice, and aspirations for future medical and health care for people with IDD. Based on the sorting of all statements, a concept map was formed, covering 13 aspects that characterize medical and health care for people with IDD across nations. The 13 aspects varied minimally in importance ratings and were grouped into five overarching conceptual themes: (i) active patient role, (ii) provider role, (iii) context of care, (iv) consequences of care for people with IDD, and (v) quality of care. The themes, clusters and statements identified through this explorative study provide additional content and context for the specific patient group of people with IDD to the dimensions of previous models of medical care.

全球范围内针对智力与发育障碍（Intellectual and Developmental Disabilities, IDD）人群的医疗照护组织模式存在显著差异，且不同国家对IDD人群医疗照护概念的解读亦各不相同。现有医疗照护模型并未针对IDD人群的特殊医疗需求进行定制化设计。本研究旨在通过概念图（concept mapping）法，探究国际研究者与从业者对IDD人群医疗照护的描述方式，从而深化对该群体医疗照护核心构成要素的认知。来自17个国家的25名IDD医疗照护领域专家（含研究者与从业者），借助在线概念图工具，在头脑风暴环节中提交了其所在国家的医疗照护相关陈述条目。随后，参与者对所有收集到的陈述条目进行分类排序，并完成重要性评分。参与者生成的陈述涵盖了当前医疗与健康照护实践现状、优质实践的理念，以及对IDD人群未来医疗健康照护的展望。基于所有陈述的分类结果，研究构建了概念图，涵盖13个能够体现全球范围内IDD人群医疗与健康照护特征的维度。这13个维度的重要性评分差异极小，可被归纳为5个核心概念主题：（i）患者主动参与角色、（ii）照护提供者角色、（iii）照护场景、（iv）照护对IDD人群产生的影响、（v）照护质量。本探索性研究识别出的主题、聚类簇与陈述条目，为既往医疗照护模型的维度补充了针对IDD这一特殊患者群体的具体内容与场景信息。