Title: One-to-one Peer support for family members and friends of patients treated under the mentAL health act (OPAL).
Funder: Department of Health and Social Care

Abstract: Research question Is a one-to-one peer support programme for carers of people treated under the Mental Health Act (MHA) feasible and acceptable in England? Background Research on carers of people treated under the MHA identified that they often experience frustration with services, feel excluded from their relatives/friends care and are distressed by complex emotions, including feelings of guilt. This can cause emotional difficulties and put strain on their relationships with their relatives/friends. Whilst these personal feelings are not adequately addressed in carer support groups, no one-to-one intervention is available in England. In Germany a one-to-one carer peer support scheme was developed and has become routine care in more than 35 areas and 250 hospitals. Aims and objectives Adapting one-to-one carer peer support for delivery in England and testing its feasibility, acceptability and costs. Methods and timelines The project comprises three research work packages (WPs), carried out in urban (East London) and rural (Warwickshire) sites and one WP devoted to dissemination and stakeholder involvement. All WPs will follow an experience based co-design (EBCD) approach. WP1 (Months 1-9): Workshops with carers, service users and clinicians and one-to-one interviews with carers to generate ideas about barriers and facilitators for the adaptation of one-to-one carer peer support to England. WP2 (Months 3-9): In-depth interviews with senior clinicians, mental health advocates, behavioural experts and carers/service users to specify a theory of change and help to develop a preliminary manual and training procedures, building on German materials. WP3 (Months 10-25): Mixed method longitudinal study to refine and test one-to-one carer peer support using a &ldquo;train- the-trainer&rdquo; model. This study will have two stages to allow progressive refinement of the programme. Experiences, costs, engagement of carer peer supporters and carers, quality of life of carers and any adverse events will be assessed at both stages. Stage one: One of the developers of the carer peer support in Germany and a carer co-applicant will train four carer peer supporters (CPS) who will then support three carers each (12 overall). Stage two: The four previously trained CPS will train 12 CPS who will support 36 carers. Fourteen carers will be involved in two lived experience advisory panels (LEAPs), one at each site. They will meet at key decision-making points of the project in order to co-design the intervention and co-steer the project with the researchers. Anticipated impact and dissemination Providing peer support to carers can reduce their caregiving stress and improve their quality of life, and also indirectly ensure that patients are better supported and pressures on services are reduced. WP4 (Months 1-30), dedicated to dissemination and stakeholder involvement will start with co-producing with the LEAPs an interactive website. We will then have workshops with carers, users, health and social care, professionals, charity officers, commissioners and other policy makers to identify organisational considerations and future research agenda for implementing carer peer support. This will be summarised in academic publications, in a technical guide for policy makers and in a guide for carers interested in offering or receiving peer support.

Lay abstract: What are the aims of this research? Establishing a new approach to support family and friends (commonly referred to as &ldquo;carers&rdquo;) of patients treated under the Mental Health Act (MHA). What led to this research? Previous research on experiences of carers of patients treated under the MHA showed that most carers feel isolated and unsupported. They need help to overcome feelings of frustration and guilt and to restore relationships with their loved ones and services. The recent MHA review recognised the need to support carers throughout this challenging time. However, at present, there are no routinely available services doing this. What will we study? Peer support among patients has proved to be popular and effective in mental health services with limited costs. In Germany, a programme where carers are trained to support other carers reduced caregiving stress and improved carers quality of life. In this project, we will learn from this German experience and explore how one-to-one carer peer support can be best provided to carers of people treated under the MHA in England. How will we study this? The project will be carried out in urban (East London) and rural (Warwickshire) sites. Firstly, we will organise workshops and one-to-one interviews with carers, service users and clinicians to generate ideas on how one-to-one carer peer support can be delivered in England. We will then develop the training programme using a train the trainer model and test it in two stages. Stage one training will be delivered by one of the developers of the programme in Germany (who is fluent in English) to four carer peer supporters (CPS), who will then support three carers each (12 overall). Stage two training will be delivered by the four previously trained CPS to 12 CPS who will then support three carers each (36 carers overall). Experiences, costs, engagement of carers and carer peer supporters, quality of life of carers and any adverse events will be assessed. Fourteen carers will be involved in two lived experience advisory panels (LEAPs): one LEAP in each site. They will co-design the carer peer support programme with the researchers, and offer their insights and perspectives to the whole project. How will we share our results? We will work with LEAPs to create a project website. We will host workshops with key stakeholders: carers, users, professionals, academics, policy makers, and charities. Workshops will explore: a) how carer peer support can be organised and funded in England; b) how to test benefits and/or undesirable effects on a larger scale. We will publish findings in academic journals and in publications designed for service users and carers and produce guides about the peer support programme for carers and policy makers.

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