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.

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.

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.

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.