Health Literacy in people with intellectual disabilities – is there a need for an adapted concept?

Abstract

Abstract Background Health literacy (HL) is a crucial factor in terms of health and health-related outcomes. HL refers to personal and social resources as well as the abilities to access, understand, appraise and apply health information to make self-determined health decisions. Due to reduced resources including cognitive abilities it is assumed that HL in people with intellectual disabilities (PWID) is low. Up to 3% of the general population have an ID (IQ < 70). Methods Current state of the art is presented via a mixed-method literature review published in 2019. Against that, results from 5 target group orientated groups are presented (n = 50). Results Literature Review (12 studies incl.): HL does not go beyond a purely functional understanding. Studies assume that the HL level of PWID is very low, but fail to mention a reference source. Overall, studies are mainly from the health professionals' perspective and exceptions directly questioned or focused people with ID. People with ID still seems to be a 'hidden' population in HL research. Group discussions: An introducing quiz about health-related topics turns into a discussion within the group of PWID. Topics were physical activity, nutrition and health advices from health professionals like GPs. Instructions of physicians were discussed; a critical view of health advices were taken. Bassed on experiences own health decisions are described. Trained caregivers like nurses are stated as an own professional HL resource. Communicative and critical HL have been demonstrated. Conclusions There is only little knowledge about HL in PWID. Promoting HL could be highly beneficial for managing health information with a positive impact on PWID themselves (empowerment), their (family) caregivers, and the health care system (reducing health costs). A debate to conceptualize HL for PWID is mandatory. This must be based on valid data, consider the perspectives of PWID and have to respect the resources of PWID. Future directives will be discussed. Key messages People with ID communicative and critical health literacy is is available but not yet explored how it can be increased. A target-adapted health literacy of people with intellectual disabilities is beneficial, it it takes the perspectives of this target group into account.