Title: Exploring and addressing At Risk Mental State (ARMS) disengagement in collaboration with service-users
Funder: Health Education England

Abstract: Background Psychosis is a condition whereby people may lose touch with reality, which can adversely impact many areas of an individual's life. There are well established criteria for determining whether someone might be at risk of developing psychosis (using the term the 'at risk mental state' or ARMS). Services and interventions have been developed to try and prevent psychosis, however these are variable and ARMS users often disengage from support. Disengagement is poorly understood from a user perspective which may lead to longer term negative outcomesAims and objectives Explore disengagement generally within mental health literature to build theory Understand reasons for and impact of ARMS disengagement and people's preferences on how we might address this Develop a user-centred service model to reduce ARMS disengagement and improve overall outcomes Methods Phase 1: Literature reviewSystematic searching and screening will identify relevant qualitative disengagement studies. Their findings will be synthesised into themes to build knowledge and theory on disengagement in mental health. Data will be extracted in accordance with principles of meta-synthesis, and analysed using a thematic approach, providing a theoretical basis for phases two and three. Phase 2: Qualitative interviewsOne to one semi-structured interviews with disengaged ARMS will explore reasons for disengagement, the impacts, and perspectives on how this might be addressed. Interviews will be informed by previous PPI work and phase one findings. Qualitative description methodology will provide rich data due to little being known about the topic. Data will be analysed using both a deductive and inductive approach using Framework Analysis. This will ensure a systematic approach in answering specific questions relevant to policy and practice and will involve PPI members. Phase 3: Delphi study Statements will be generated from phases one and two of the research to utilise in a Delphi study. Service users, carers, ARMS experts and clinicians will be consulted through in three 'rounds' using online surveys, voting on priority areas using statements, with the opportunity to add their ideas. Rating statements will result in consensus and refinement of a service model to address disengagement and improve ARMS service delivery. Timelines for deliveryPhase one - 12 months (months 1-12) Phase two - 18 months (months 1-18) Phase three - 18 months (months 12-30) (see GANTT) Anticipated impact and dissemination Findings will contribute towards theory regarding disengagement and the knowledge of how to address this with ARMS through a co-designed user-centered service model. This may reduce risk of long-term health problems and economic burden.The model can be rapidly disseminated into relevant practice recommendations and guidelines, encouraging standardisation which may address service variation issues. Application for further funding will be sought to test this out in practice. Creative co-production of outputs through ongoing advisory group consultation will ensure the research is disseminated widely through inclusive formats. This will include; conference presentation; presentation to key stakeholders (commissioners and policy makers, service user groups and NHS organisations); sharing findings through social media and networking; publications in academic journals; accessible blog posts and animations.

Lay abstract: Aims of the research We aim to explore and understand why people choose to stop receiving support from ARMS services (or 'disengage'). We hope to address this through developing a care model service-users value, which can be delivered in the NHS to reduce disengagement and improve overall outcomes. There are three proposed phases to the project.Background to the research Psychosis is a psychological condition whereby people may experience distressing thoughts and experiences. This can negatively affect important areas of a persons life such as family and social relationships, education or work. NHS mental health services and treatments to prevent the onset of psychosis have been developed for those who might be at risk of psychosis, and these use the term 'at risk mental state' or ARMS. Despite these services existing, ARMS users often disengage from support. This may lead to negative outcomes such as developing psychosis or other mental health problems. There is therefore a need to better understand disengagement from services among 'at-risk' individuals. Although previous research has suggested how to address barriers to receiving ARMS care, there are no studies which specifically explore disengagement and how to address this from a service-user perspective.Design and methodsFirstly, we will search for and review research exploring mental health-care disengagement studies in whats called a 'systematic review'. What we learn from this review will be used to build knowledge about disengagement to support the next two phases of the project. Next, we will explore people's experiences of disengaging from ARMS services through one-to-one interviews. Interview topics will be taken from the systematic review, and from our work with a patient and public advisory group. In these interviews, we aim to ask what influences peoples decision to disengage, associated impacts of this and participants ideas on how services might address any barriers to receiving the support.Finally, we will use what we've learned from the review and interviews to develop a care model to address disengagement, drawing on knowledge of experts (clinicians, researchers, service-users and carers) by running whats called a 'Delphi study' where we will generate statements that describe what we learned during phases one and two. Experts will each vote on these statements to indicate which are the highest or lowest priorities for the model using online surveys over several 'rounds', and have the opportunity to add their ideas. By the end of the rounds we will produce a final version of the model.Patient and public involvement PPI discussions were ran prior to planning the project with ARMS (previous and current users ages 16-55) and their carers. Feedback was obtained on research priorities, design and ideas on how to reach participants which has shaped the project.A diverse service-user and carer advisory group will be appointed to ensure continuing involvement at all stages of the research cycle i.e., obtaining feedback on interview questions, designing participant information sheets, analysing interviews, planning how to share findings. We will also employ a service user researcher to carry out interviews in phase two of the project. DisseminationResearch results will be shared with a wide audience, in inclusive formats in collaboration with those who took part and advisory group members to promote awareness and service improvements (5). This will include; conference presentation (nationally and internationally); presentation to key stakeholders (commissioners and policy makers, service user groups and NHS organisations); sharing findings through social media and networking; publications in academic journals; accessible blog posts and animations. The user-centred care model will be ready to test in practice, and we plan to apply for further research funding to ensure this is feasible.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH