Distributed Health Literacy Among People With Intellectual Disability, Their Supporters and Healthcare Professionals: A Scoping Review

Abstract

Background: Health literacy is associated with improved healthcare experiences and health outcomes and is influenced by the social context in which it occurs. People with intellectual disability face stark health inequalities, yet the health literacy concept is underexplored for this group. Little is known about how health literacy is co-constructed between people with intellectual disability, supporters and healthcare professionals. Objective: The aim is to understand the experiences of people with intellectual disability accessing, understanding, appraising and applying health information together with their supporters and healthcare professionals. Search Strategy: This scoping review followed Joanna Briggs Institute guidelines. Articles were identified and retrieved from CINAHL, PsycINFO, PubMed and EMBASE. Articles were included if they were published between 2000 and the present and focussed on aspects of how people with intellectual disability accessed, understood, appraised or used information or the role that socio-environmental influences, including support networks and healthcare professionals, have in this process. Data Extraction and Synthesis: Two reviewers completed abstract and full-text screening, addressing any conflicts at each stage. Data were extracted and coded deductively, according to the integrated model of health literacy. Main Result: Following search and screening, 90 articles were included for review. Interpretation of the evidence suggests that health literacy is a relational process between people with intellectual disability, support networks and healthcare professionals. Each group experiences particular barriers and facilitators to this process and is impacted by its wider social and environmental contexts. There was limited evidence about how personal characteristics might shape health literacy, particularly intersectional experiences. Discussion and Conclusions: Health literacy is a social practice, with roles and responsibilities shared among people and systems. Healthcare and disability sectors can facilitate health literacy by creating environments that support shared access and use of health information, as well as facilitate choice and decision-making. Patient or Public Contribution: Collaboration with people with intellectual disability in scoping reviews is an emerging area. We gained the perspectives and feedback of colleagues with lived experience of intellectual disability for the design of the review and interpretation of the evidence. This included meeting with a Lived Experience Reference Group of seven people with intellectual disability to discuss our process and findings and receive their guidance. Their contributions supported how we interpreted the findings and reported the review.