What are the Enablers and Barriers to Patient and Public Involvement in Dementia Research? An Adapted Systematic Review of the Current literature

Abstract

Abstract Background: A growing number of studies on patient and public involvement (PPI) have involved people with dementia (PWD), but few studies have investigated the enablers and barriers factors for PPI. Therefore, the objectives of this review were to specify the barriers and enablers mentioned in PPI studies, investigate the best methodology for use in PPI research and explore the relevant types and contexts of PPI of selected studies within the UK setting. Method: A comprehensive search of the literature was conducted between December 2020 and April 2021 to identify relevant studies by scanning eight electronic databases and searching grey literature, followed by hand-searching in March 2021 through several search terms. Studies that focused on PWD and other individuals interested in this field included the enablers and barriers factors associated with PPI. Additionally, the included studies' time range was within the last ten years and the studies were required to have been conducted in the UK. The Joanna Briggs Institute (JBI) tool was used to assess the risk of bias. This review also adopted the six phases described by Braun and Clarke (2006) to present and synthesise the results. Results: Fourteen studies were included and reported on in this review. The investigation of the enablers and barriers contributed to PPI with variable processes and methods used. The JBI identified diverse biases encountered among the included qualitative studies. Data synthesis was established for two main themes related to the enablers and barriers and several subthemes were conducted. Discussion: This review identified similar themes to the previous studies; however, there is still a limitation in reporting participants, context and relationships in greater detail. The limitations and challenges addressed in this review include diversity, flexibility, ethical conflict and time scale. This review has acknowledged the benefits of PPI in dementia research.