Although health literacy is widely discussed and many heterogeneous conceptualizations exist, people with intellectual disabilities have remained largely unconsidered. The purpose of this conceptual paper is to analyze the particularities of this target group and discuss and consider implications that arise when conceptualizing the health literacy of people with intellectual disabilities. Therefore, we explore relevant approaches from multiple disciplines and examine their transferability to a conceptual understanding of health literacy for people with intellectual disabilities. For future directions we identified three main dimensions: (1) disentangle health literacy from empowerment; (2) apply a positive, asset-based focus to health literacy; and (3) focus on health literacy as a distributed resource across individuals and their individual life-world.

People with intellectual disabilities are exposed to particular challenges within the healthcare system. In particular, elderly people with intellectual disabilities have special needs and require physical activity to prevent age-related diseases. Health Literacy could help people with intellectual disabilities to take participative healthrelated decisions. To be able to generate knowledge in this area, a literature search was carried out. For this the databases PubMed, Scopus, ERIC, CINAHL, PsycINFO, and Web of Science were searched. The research shows a research gap in the field of health literacy among people with intellectual disabilities. Nevertheless, three categories have been systematized: Barriers for people with intellectual disabilities, health literacy promotion for people with intellectual disabilities, and studies concerning the concept of health literacy for people with intellectual disabilities. The studies found emphasize the importance of a target group specific health literacy concept for people with intellectual disabilities and a need to involve health professionals and adequate communication. In addition, conceptualisation considerations should take into account the specific skills and social context factors of people with intellectual disabilities. Furthermore, the results show that there is an urgent need for a target group-specific definition and measuring instruments.

Background: People with intellectual disabilities (IDs) constitute a high-risk group in relation to several diseases. Promoting their health literacy (HL) could be highly beneficial in the management of health information and making informed decisions. However, there are varying ranges of cognitive, communication and literacy levels in people with IDs. According to our literature review, a HL concept for this target group has not been adequately conceptualized. Methods: To increase knowledge about the target group, adapted HL results from three innovative (research) projects are presented. Results: The key factors are: a) target group orientation; b) social context and everyday life; c) individual resources, like communication and literacy levels; d) a multi-modal strategy to strengthen HL; and e) the self-determination and participation of people with IDs. Conclusions: The projects illustrate that the HL of people with IDs has been successfully addressed by taking these key factors into account. A target-group-orientated HL concept could affect more than positive health outcomes; it could also empower a high-risk group in relation to health problems. However, to develop successful action concepts and strategies, valid data are crucial. The heterogeneity of people with IDs is one of the biggest challenges in obtaining such data. Future studies will need to face these challenges.

People with intellectual disabilities have a comparatively low level of physical activity and are affected by associated numerous impairments and diseases. However, target group specific interventions and concepts aiming at sustainable physical activity-related behavior change in everyday life are rare and the needs and perspectives of the target group have hardly been considered so far. Therefore, a target-group oriented intervention was developed. The research and developmental process was characterized by a participatory approach, involving people with intellectual disabilities throughout the whole process. For example, the interview guideline, design of the interview situation and ways of communicating were developed in a participatory manner. Twenty-four qualitative interviews with people with intellectual disabilities were conducted to explore individual physical activity-related experiences and strategies. Individual and contextual influences on physical activity were identified. Interview results were used to conceptualize an intervention that aims at promoting physical activity in the everyday life of people with intellectual disabilities by strengthening their self-management strategies. The intervention was tested in practice and modified based on communicative validation methods. Good acceptance in the long term is also expected, as the intervention takes place in people’s living environment, is socially embedded and builds upon the needs of the target group.

Summary People with intellectual disabilities have a significant lower level of health literacy compared to the general population which exacerbates participation of the target group. Therefore, people with ID shall be strengthened with regard to health literacy. Explanatory videos are a promising approach to reach that goal. Yet, explanatory videos are neither frequently used in people with intellectual disabilities nor is known a lot about the efficacy of explanatory videos. Two scoping reviews were conducted. One review is an update of an existing review dealing with Health Literacy in people with intellectual disabilities. The second review focused on explanatory videos and people with intellectual disabilities. CINAHL, PubMed, PubPsych and Web of Science were searched. Health Literacy and intellectual disability: nine publications were identified: five publications focused on several aspects of Health Literacy in the target group. A total of four publications discussed ways to increase Health Literacy in people with intellectual disabilities. One publication described existing barriers in accessing and understanding health-related information for people with intellectual disabilities. Explanatory videos and intellectual disability: No eligible publications could be found. The conceptual discussion on health literacy in people with intellectual disabilities is continuing. Nevertheless, often only small subgroups are addressed. Although ideas for increasing health literacy in people with intellectual disabilities exist, there are only little interventions that were scientifically evaluated. There are publications that deal with explanatory videos in the context of intellectual disability, but they do not focus on the efficacy of these videos or special needs of the target group.

People with intellectual disabilities show significantly lower levels of physical activity than the general population in respect to all consequences for health. A positive effect of physical activity on health preservation has been proven, but interventions for physical activity in everyday life seem to be rare for people with intellectual disabilities. Based on a previously conducted scoping review the Template for Intervention Description and Replication (TIDieR) checklist was prepared. This article describes and compares physical activity interventions in everyday life for individuals with intellectual disabilities with the aim to of identifying successful strategies and areas for improvement. The 12 included interventions are heterogeneous, but commonalities and similarities can be identified. There are suggestions for successful strategies to implement physical activity interventions. However, much information could not be found. The promotion of healthier lifestyles is important to improve the overall health in this population.

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Health literacy is primarily understood as an individual construct. People with intellectual disabilities still seem to be a “hidden” population in health literacy research. A target-orientated health literacy approach for this population is needed for developing precise and effective interventions that consider social context dimensions. Therefore, the following research question was answered: Which dimensions influence the health literacy of people with intellectual disabilities? A secondary data analysis containing 38 guided interviews with people with mild to moderate intellectual disabilities was conducted. The analysis followed the content analysis by Schreier (2012). Six main dimensions were inductively outlined, which are “interpersonal relationship”, “organizations and communities”, “healthcare system”, “education”, “digital interaction spaces”, “politics”, and “cultural contexts”. All these dimensions influence people with intellectual disabilities on an individual level regarding their level of health literacy. The importance of these single dimensions becomes clear, although for now, the link between all these dimensions is not yet considered. In future research, the focus should be on how to develop interventions considering social context dimensions. Furthermore, analyzing the connection between those dimensions seems promising.