Experience is central and connections matter: A Leximancer analysis of the research priorities of people with lived experience of mental health issues in Australia

Abstract

Mental health research priority-setting has a long history internationally. Many of these studies use expert panels or consensus methods across multiple mental health stakeholder groups. Whilst such approaches are designed to produce agreed research priorities, there is a risk that the specific and nuanced priorities of less powerful groups, especially those with lived experience of mental health issues, are lost in translation. We aimed to develop Australian mental health research priorities from the perspectives of people living with mental ill-health and their carers, families and kinship group members. A cross-sectional, open-ended survey was conducted nationally in Australia during January and February 2022. We asked participants to list three priorities on which mental health research should focus. Responses were analysed using Leximancer, a text analytics tool, to examine the concepts and their connections across the data. A total of 365 people with lived experience of mental ill-health participated in the survey. The majority (57%) identified as consumers, with 14% identifying as carers and 29% reporting both types of lived experience. Participants were from all Australian states and territories and from metropolitan, regional and remote areas. The Leximancer analysis generated 30 concepts in six thematic priority areas. The most prominent themes were experience, treatment and impact, followed by stigma, peer and trauma. The concept maps displayed complex connections and interrelationships between specific concepts, with lived experience a large and central concept. Analysis of the textual responses emphasised the importance of examining specifics, as the nuanced research priorities traversed themes and concept across the maps. This project provides robust evidence on the central importance of experience as driving mental health lived experience research priorities. Further, it demonstrates that people with lived experience describe the key issues in complex, interrelated ways that require multi-factorial research approaches to address.