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Category: Project

Description: Objective: To understand the challenges and approaches used to support inclusion of adults with a learning disability in health and social care research.      Introduction: Adults with a learning disability are often excluded from health and social care research despite experiencing significant disparities in health outcomes and high social support needs. Research teams have a fundamental role to play in addressing this disparity. However, there are challenges to including people who have learning disabilities as participants in research, within established research processes and structures, exacerbated by the challenges of meeting their needs and the challenges associated with reaching them through gatekeepers. Research teams have a fundamental role to play in addressing this disparity. However, there are challenges to including people who have learning disabilities as participants in research, within established research processes and structures, exacerbated by the challenges of meeting their needs and the challenges associated with reaching them through gatekeepers. This study will identify the challenges of including adults with a learning disability in health and social care research and surface methods and approaches that have been used to support their inclusion in health and social care research. Inclusion criteria: The review will follow the Joanna Briggs Institute guidance for scoping reviews and meet the following criteria: Population: evidence stating adults with a learning disability. Concept: describing any aspect relating to challenges or approaches to supporting adults with a learning disability to take part as participants in health​ and social ​care research. Context: any grey literature and peer-reviewed literature Methods: The JBI methodology for scoping reviews will be used to conduct this review. The search terms for grey literature will be deliberately broad and will include ‘learning disabilities’, ‘intellectual disabilities’, ‘Down syndrome’, ‘Fragile x’, ‘Prader Willi’, ‘Angelman’, ‘health or social’, ‘co-production’. The search activities and terms will be iterative to allow for a broad search and will include grey literature databases, websites of relevant organisations and research centres, and internet searches. Data will be extracted on the barriers and enablers of inclusion, and approaches identified will be summarised in descriptive tables. Protocol amended to include a rapid search of one database i.e. Medline – Ovid for peer reviewed literatures of all English article. Additional search terms include research participation, inclusive methods, research design, participatory design, community-based participatory research or participatory research, inclusive research.