Title: A peer-delivered disclosure course as an intervention to combat the stigma of psychosis: intervention refinement and feasibility
Funder: Department of Health and Social Care

Abstract: Research question: Is it feasible to conduct a randomised controlled trial (RCT) of a peer-delivered disclosure based programme for people with psychosis who report at least moderate levels of internalised stigma. Background: Psychosis is a severe mental health problem that has significant personal and social costs. People with psychosis commonly face stigma and discrimination (S&D). A common and problematic consequence of stigma is internalisation of stigmatising beliefs towards oneself, referred to as internalised stigma (IS). Around 40% of people with a schizophrenia diagnosis report at least moderate levels of IS, which has been shown to have robust negative associations with hope, self-esteem and empowerment. IS has been shown to have harmful consequences for depression, suicidality and personal recovery. One promising peer-led approach to reduce IS is the Honest Open and Proud (HOP) programme, which provides an opportunity for patients to discuss mental health stigma and explore the disclosure decisions with peers. Three pilot RCTs support the efficacy of HOP with reductions in stigma stress, disclosure stress, desire for secrecy and depression compared to control. However, none of these trials were conducted in the UK, or specifically with those who have experience of psychosis. Aims and Objectives: The aim of the proposed research is to adapt and evaluate HOP for individual use in the UK with people who have experience of psychosis. Methods: We will refine HOP for the UK through qualitative methodology via individual interviews with people with psychosis who report at least moderate levels of IS. In parallel we will conduct a focus group with people who are currently employed as peer support workers. Interviews and the focus group will explore views about the potential content, format and delivery of the intervention. Both will be analysed using an inductive Thematic Analysis. We will used a modified version of HOP in a single-site feasibility RCT of individually delivered HOP to people with experience of psychosis. Timelines for delivery: The study will be conducted over 36 months. Intervention refinement in months 1-11 and the feasibility RCT in months 12-36. A modified version of the intervention will be available by month 11 and feasibility data and draft protocol for an application for a definitive trial by month 36. Anticipated Impact and Dissemination: The immediate planned outputs include: a freely available modified version of HOP; a minimum of three academic publications in peer-reviewed journals; evidence of the feasibility and acceptability of the intervention to produce an application for a definitive trial; local and national conference presentations. The results of this project will mature into an application for funding for a definitive trial. An application will be made within 6-12 months from the end of the feasibility RCT. If the definitive trial demonstrated superiority of HOP over TAU it will provide a new and effective peer-led intervention to support people experiencing the harmful effects of S&D, widespread training and skilling up of the peer workforce, evidence for HOP to be integrated into NICE guidelines and increased public awareness of the impacts of stigma.

Lay abstract: People who experience psychosis face stigma and discrimination. For some, the negative public beliefs about psychosis can affect how a person considers their identity. This is referred to as internalised stigma and it can result in loss of hope and optimism, depression and disempowerment, and act as a barrier to recovery. We know little about how best to support people with issues of internalised stigma. There have been very few effective approaches to support people with psychosis with internalised stigma. One intervention that has been shown to be helpful is the Honest Open Proud (HOP) programme. HOP is a manual-based intervention delivered by peers (people with lived experience of mental health problems), which aims to reduce internalised stigma. HOP has been shown to be helpful in the United States and Germany, but has yet to be evaluated in the UK. Therefore, we aim to adapt the current HOP intervention for use in the UK with service users who are experiencing psychosis. The HOP program will be adapted following interviews with service users and peer support workers. We will then carry out a small randomised controlled trial (RCT). This will be to plan for a definitive trial of HOP. In our RCT we will be interested in finding out if the new HOP intervention is helpful, if we could recruit the required numbers of participants, if participants will remain involved in the RCT and if they will complete the treatment they are allocated to. Participants will be allocated to HOP plus treatment as usual (TAU) or TAU alone; this will be randomly determined so that the treatments can be compared in similar groups of people. Patients who receive HOP will be interviewed about their experiences of it. If this small trial shows that the research is feasible, then it will support a funding application for a larger, definitive RCT. We have a track record of successful multisite trials of psychosocial interventions for psychosis.

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH