This ‘How-to’ Guide supports researcherssetting up participatory researchprojects that actively involve individuals with livedexperience andpatients as co-researchersin projects. With this guide, we intend to lead readers through eachstep of a participatory research project, provideprinciples and considerationsas well as checklists and specific recommendations forinvolving co-researchers with UHR-experiencein research. The concept of “ultra-high risk for psychosis” (UHR)aims to detect a risk for developing a later psychosis inhelp-seeking and symptomatic individuals at an earlystage. Within the UHR-concept, distressing experiencesbelow the threshold of manifest psychosisare defined as “attenuated psychotic symptoms”(APS) and“brief limited psychotic symptoms” (BLIPS)with respect to intensity or frequency criteria (Yunget al., 2003). This guide was co-created withco-researchers with lived experience and psychiatristswithin the VOICE project, aparticipatory research project.The VOICE project has created new perspectiveson diagnosis, treatment and research concerning thecondition of “ultra-high risk for psychosis” (UHR) by includingindividuals with lived UHR-experienceas co-researchers.By reflecting on current evidence-based guidelines ondetection and treatment, unmet needs were identifiedand new insights into this state gained.
