Chair for Pedagogics and Rehabilitation for Persons with Intellectual and Profound Disabilities, Department of Rehabilitation and Special Education, Faculty of Human Sciences, University of Cologne, 50931 Cologne, Germany.
Int J Environ Res Public Health. 2022 Dec 15;19(24):16874. doi: 10.3390/ijerph192416874.
: People with profound intellectual disabilities represent a vulnerable and heterogeneous population whose health-related needs and questions often remain unheard. One reason for this is that they are usually unable to participate in verbal communication. However, there is also a lack of suitable approaches to communicate health-related information to them according to their capabilities. The research presented in this paper addresses this gap. Following grounded theory methodology, we used a multimethod approach. Based on a theoretical analysis, a Delphi study ( = 14) was conducted as a starting point to map the research field. In a second step, these findings were incorporated into an online survey targeting disability care professionals ( = 111). Three field studies supplemented the data, encompassing a variety of ethnographic methods. : People with PIMD have basic health-related capabilities that can improve their health literacy. Nevertheless, their support environments have to take over many health literacy-related requirements by proxy or substitution. One of the most important tasks is to engage health information in an individualised way. : The findings underline the importance of focusing on more basic capabilities and intersubjective approaches in health literacy research and practice, especially regarding new perspectives on the inclusion of previously marginalised populations (such as people with PIMD).
: 重度智力残疾者是一个弱势且多样化的群体，他们的健康相关需求和问题常常未被关注。其中一个原因是他们通常无法进行口头交流。此外，也缺乏根据他们的能力向他们传达健康相关信息的合适方法。本文介绍的研究旨在填补这一空白。本研究采用扎根理论方法，采用多方法途径。在理论分析的基础上，开展了一项德尔菲研究（n=14），以此作为映射研究领域的起点。在第二步中，将这些研究结果纳入针对残疾护理专业人员的在线调查（n=111）。三项实地研究补充了数据，采用了多种民族志方法。 : 患有 PIMD 的人具有基本的健康相关能力，可以提高他们的健康素养。然而，他们的支持环境必须通过代理或替代来承担许多与健康素养相关的要求。其中最重要的任务之一是将健康信息以个性化的方式呈现。 : 研究结果强调了在健康素养研究和实践中关注更基本能力和主体间方法的重要性，特别是考虑到关于纳入以前被边缘化的人群（如患有 PIMD 的人）的新视角。
