Scoping review of health outcomes for people with disabilities in user-led organisations

Abstract

A user-led organisation (ULO) may be defined as an organisation that is run and controlled by the people who use the services provided by that organisation. ULOs provide services to their members, such as information, advice, support, treatment and training. ULOs may also be involved in advocacy, influencing local service provision, government policy and public perceptions of disability. This scoping review concentrated on health outcomes achieved by ULOs for people with disabilities, including physical, sensory, cognitive, intellectual, neurological or mental health impairments. Based on a search of the academic literature up to 30 June 2020, 26 articles were included. Twenty-four articles were on ULOs for mood disorders, schizophrenia or psychosis, and there was one article each on ULOs for cross-disability and chronic non-malignant pain. There was some evidence that peer-run and inclusive ULOs for members with mood disorders, schizophrenia or psychosis can reduce the number of times people with these illnesses access traditional mental health services. There was no evidence that ULOs can replace traditional mental health services. Therefore, ULOs for mood disorders, schizophrenia or psychosis could be considered an adjunct to traditional mental health services, not a replacement. For other disabilities, a lack of evidence means that no recommendation can be made. However, the organisational structure of ULOs may be as important as the support and services offered.