Title: The Involvement of Family and Friends in Inpatient Mental Health Care: What Do Patients Want?
Funder: Department of Health and Social Care

Abstract: Background: People using mental health services are more likely to have favourable clinical outcomes when their supportive family members and friends (carers) are involved in their care [1]. Practically all UK mental health guidelines and policies suggest some form of carers' involvement in patients' care (e.g. [24]). However, implementation rates remain very poor, and carers frequently report feeling excluded from the treatment process [57]. This is especially problematic in inpatient settings, where clinicians report difficulties in knowing how to facilitate involvement whilst coping with heavy workloads (e.g. [810]). A recent systematic review identified a number of organisational barriers to implementing carers' involvement [11]. However, the majority of the available evidence was based solely on staff perspectives. In clinical settings, support from patients is critical for carers' involvement to take place effectively. Despite this, the research literature severely lacks exploration of patients' preferences regarding involvement. There is a need to gain a broader understanding of this area in order to design person-centred policies and effective implementation guidelines. This would potentially deliver large savings for the NHS by improving adherence to treatment and reducing relapse rates [1214]. This research therefore aims to answer: (1) Who do mental health patients want involved in their inpatient care (if anyone) and what kind(s) of involvement do they want? (2) Which factors do patients and carers identify as significant barriers and facilitators to carers' involvement in inpatient settings? (3) Which factors are associated with patients' preferences regarding involvement? Plan of investigation: A conceptual review will provide the context for understanding what carers' involvement means for patients and carers accessing mental health services. This will be considered in terms of (1) what are the expected benefits of involvement? (2) how much influence do patients and carers have to adapt the approaches to their needs? and (3) what is the balance of power between patients, carers and professionals in the different approaches? Qualitative interviews will be held with 20 patients and 20 carers to explore their experiences, opinions and preferences regarding carers' involvement. Salient themes will be identified using thematic analysis. Interview and review findings will be used to inform a cross-sectional study comprised of survey development, inpatient surveys and three-month follow-up interviews. As this is an unexplored area, a small feasibility pilot on 30 participants across two sites will determine the target sample size (provisionally set at 200 participants) and the final survey content. The brief survey will statistically measure factors related to patients' carers' involvement preferences and whether their choices remain stable over time. The study findings will inform the development of a guide, which will be co-produced with service user and carer researchers. Instead of presenting a new intervention, it will be designed to facilitate services' existing practices. The results of the study will be submitted for publication in open access journals. Accessible summaries will be shared via the internet, including social media accounts and guest blog posts. The proposal has been developed with involvement from several service users' and carers' organisations. Dissemination of the findings will be supported by these existing links, as well as establishing further relationships. Anticipated benefits: The findings from this study have the potential to improve the experiences of patients, carers and clinicians in inpatient settings by: (1) Informing clinicians about how best to elicit patients' preferences and the potentially influential factors to be mindful of when facilitating carers' involvement. (2) Identifying barriers and facilitators to implementation from the perspectives of patients and carers. (3) Contributing substantially towards the development of patient-centred approaches to mental health care by researching a significant but underexplored area.

Lay abstract: This study will investigate the views of patients in involving friends and family members (carers) in their mental health care whilst they are in hospital. This is an area in which carers often express frustration with services and clinicians report difficulties in knowing how to balance the needs of patients and carers whilst coping with heavy workloads. The views of patients themselves have not been explored in detail. This study will use both qualitative (interview and review) and statistical (survey) methods to investigate what affects patients' preferences about carers' involvement. At the end, a guide will be produced to help clinicians in inpatient services to understand some of the things that might be associated with patients' feelings about carers' involvement, and suggest ways of working with them. Studies have found that people using mental health services are more likely to stick to their treatment plans and have better outcomes when their supportive friends and family members are involved in their care. Most government policies and mental health guidelines suggest that staff members should involve carers in patients' treatment. Despite this, carers frequently report feeling excluded from patients' care and from giving or receiving information about the patient. This is particularly a problem in hospital settings, when someone is admitted to an inpatient ward following a mental health crisis. Money that is spent on training staff to work with carers is wasted when carers' involvement cannot take place. On the other hand, if carers' involvement is indeed useful for patients and can prevent relapses, it would deliver large savings for the NHS as well as improving people's experiences with services. In the published research, the many difficulties that carers can face when trying to be involved are reported quite widely. There are also lots of studies discussing staff members' and researchers' opinions about how best to involve carers. However, when considering carers' involvement, the thoughts and feelings of patients themselves have not really been explored in detail. Patients are often held responsible for giving the green light for carers' involvement, as their consent determines whether clinicians engage with carers or not. However, there is almost nothing in the research literature which helps clinicians understand how patients want involvement to take place or which things might be important for them when making their decisions. It is also unclear whether patients' preferences about involvement remain fairly stable, or change over time.When planning this study, both patients and carers said there would be value in investigating these different elements. It is therefore important to understand who patients might want to have involved in their treatment, and how this should take place. It is also important to provide clinicians with clear practical guidance about when and at least how often to ask patients about involvement. This study aims to answer these questions using a number of methods: First, existing approaches will be reviewed to understand what carers involvement currently means for patients and carers. This will be considered in terms of (1) why do clinicians involve carers at the moment? (2) how much influence do patients and carers have to adapt the approaches to their needs? and (3) what is the balance of power between patients, carers and professionals in the different approaches? This will provide information for understanding where there might room to include patients' and carers' preferences in NHS settings. This review will be guided by discussions with members of SUGAR (Service User and carer Group Advising on Research).Next, 40 patients and carers will be interviewed to get a deeper understanding of their experiences, opinions and preferences about carers' involvement. Two researchers from SUGAR will be trained to analyse the findings with the applicant. The information from the interviews will be used to design a short survey, which will be administered to around 200 people who have recently been admitted to hospital. The survey will measure whether particular factors influence patients' decisions about how much carers' involvement they want in their treatment. It will also measure whether (and how often) their preferences change. Finally, all of the results will be written into a guide for clinicians. The guide will be co-produced with three researchers from SUGAR. The results of the study will be submitted for publication in open access journals. They will be shared on the internet and social media, including Twitter accounts and guest blog posts. They will also be shared with clinicians via various existing connections, such as within East London NHS Foundation Trust and the Carers Trust.

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