Recognising Basic Health Literacy Capabilities: An Explorative Study on the Relevance of Health-Related Information in the Support of People with Profound Intellectual and Multiple Disabilities

Abstract

Background: 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. Methods: Following grounded theory methodology, we used a multimethod approach. Based on a theoretical analysis, a Delphi study (n = 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 (n = 111). Three field studies supplemented the data, encompassing a variety of ethnographic methods. Results: 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. Conclusions: 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).

Understanding Behavioral Manifestations of Obsessive-Compulsive Disorder in People with Intellectual Disabilities—A Qualitative Study

“…All diagnoses listed refer to the 10 th revision of the ICD, but they have been translated here in accordance with the 11 th revision for the sake of the study results' connectivity. In accordance with the research ethics principles of informed and ongoing consent [33], before the non-participant observation began, the researcher provided the person with ID and received an explanation of the purpose of the obser- [34]. Further, as this part of the study also involved vulnerable people with ID in the broader sense (i.e.…”

“…Special attention was given to the vulnerability of people with ID, ensuring informed and ongoing consent as described by [33] for people with profound intellectual and multiple disabilities (PIMDs), and maintaining ethical standards and reflexivity throughout the research process. The study also adhered to the data protection regulations of the Data Protection Act of North Rhine-Westphalia (DGS NRW) in order to adapt the data protection law to the General Data Protection Regulation (DGSGV).…”

An Introduction to Health Literacy and Social Contexts with Recommendations for Health Professionals and Researchers

“…Like Vetter and colleagues, Dins and Keeley (2022) [42] explored the role of social connection and health literacy among individuals with intellectual disabilities, but they focused on a population with profound intellectual disabilities (PIDs), who may have limited ability to understand, or to communicate their understanding, of health-related information and engage in shared decision-making. Thus, Dins and Keeley examine the role of caregivers in addressing and communicating health-related needs among people with PIDs in Germany and how and whether individuals with PIDs can be engaged in their own health-related decision making.…”

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“…Instead, there are different attempts to describe the persons. Dins and Keeley (2022) summarize: "Most descriptions of this group of persons refer to medical classifications." The latest and 11th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-11) include the following key characteristics: "A profound disorder of intellectual development is a condition (.…”

“…They are characterized by very severe cognitive, neuromotor and/or sensory disabilities, which lead to very intensive support needs" Bernasconi (2007). These support needs manifest across all domains of daily life, so that a common characteristic of this group of people is that they "typically require daily support in a supervised environment for adequate care" (Dins and Keeley, 2022).…”