Including people with lived experience in the development of the self-Dehumanisation in Psychosis Scale (DiPS): a reflective account

Abstract

Background: Lived experience involvement in measure development is recognised as best practice. This article is a reflective account, co-written between researchers and PPIE (Patient and Public Involvement and Engagement) consultants with lived experience of psychosis, about the impact of lived experience involvement in developing the self-Dehumanisation in Psychosis Scale (DiPS). Reporting is guided by the Guidance for Reporting Involvement of Patients and the Public 2 - Short Form (GRIPP2-SF).

Methodology: In developing the DiPS, people with lived experience of psychosis contributed both as research participants and as PPIE consultants across multiple stages of development. This included in study document review; identification of domains; item generation, refinement, and amendment; psychometric validation; and dissemination.

Results: Contributions made by people with lived experience were significant across all stages of developing the DiPS, including developing and shaping conceptual understanding of self-dehumanisation; item generation and selection; and improving the comprehensibility and acceptability of the measure.

Discussion: Working collaboratively with people lived experience in measure development can be of benefit both to the validity of the measure, and to those involved. We reflect on the value and importance of working collaboratively, and offer recommendations based on our experiences for researchers co-developing measures.