Definitions of terms used in this review

'Service user', abbreviated to user, describes any adult who is currently using mental health services. Some publications have employed the terms 'consumer', 'customer', 'client' or 'patient' to describe service users. The term 'service user' could be seen as the most neutral definition. The term 'user' is sometimes avoided because of connotations of substance abuse (Chamberlain 1993). In this review, 'user' does not imply drug use. For this review, the term 'service user' excludes carers, potential service users and user representatives.

'Ex‐user' denotes any former user of mental health services. Some ex‐users prefer the term 'survivor' (Mental 1994), however this can have connotations of abuse survival, and some professionals have found the term insulting (Everett 1998).

'User‐employee' is applied to users acting as mental health service employees, for example users working as case managers (Solomon 1995), or as staff in a crisis assessment programme (Lyons 1996). They may be in paid or unpaid employment with the service. We use the term user‐employee to indicate the role played in the service, as an employee with declared user/ex‐user status. It does not imply any differences in demographics or mental health status between user‐employees and other service users. Alternatively, user‐employees have been referred to as consumer‐employees (Mowbray 1996), consumer‐providers (Cook 1995) or prosumers (Solomon 1998).

'Mental health professionals' refers to staff of statutory mental health services. Although some professionals will have experience of using services, they are not included as user‐employees, as user‐employees are in roles designated only for declared service users.

'Client' refers to recipients of the mental health services in the studies. They may be receiving services from user‐employees. The term client is used to avoid confusion between those service users using the service (clients) and those providing the service (user‐employees). It does not imply any differences in demographics or mental health status between user‐employees and other service users. Distinguishing between roles that service users take in a service (eg. provider or recipient) by referring to them in different terms is common practice in the literature of involving users as service providers (Solomon 1998).

'User involvement', for this review, refers to involvement in services (not in own care), and is understood to mean active involvement.

This review covers services for adults with mental health problems, including dementia or substance abuse, that are integrated within the statutory mental health system, meaning professionally‐controlled or closely tied to the professionally‐led system. The review does not include user‐controlled services, so self‐help groups are excluded. Potential clients can use this review to decide if they want to receive services from user‐employees. User‐led services would not be relevant to this aim, as clients of those services have already made that decision. This review can also be used by mental heath professionals, to decide if and how to involve service users as user‐employees. User‐led services would not be relevant to this aim, as professionals have no control over who is employed or how, in user‐led services.

Review background

Providers of mental health services, like other health service providers, are increasingly expected to involve service users. Health policies often recommend the involvement of users in services, for example the United Kingdom (UK) Department of Health has an emphasis on patient and public involvement (Department 1999; Department 2001). User involvement is often seen as intrinsically worthwhile, but it can also have measurable effects (positive or negative).

Despite the encouragement of user involvement in service planning Western Europe and North America, there are few reports in the literature of its effects (Crawford 2002). Users have been involved as user‐employees internationally, including in the UK, Australia, the United States of America (USA) and Canada (O'Donnell 1998; Perkins 1997; Mowbray 1988; Church 1989). However, apart from occasional local surveys (Crawford 2003; Geller 1998) there are few data collated on how widespread this practice is.

Users can be 'involved' in services to varying degrees, according to how much power they have over decision‐making. This has been described in the literature in terms of patient participation ladders. In such ladders the lowest level of participation is providing users with information (Hickey 1998). The next rung up is consultation (Hickey 1998; Newcastle 1998) which incorporates, for example, consumer satisfaction surveys (Poulton 1999), where collected user views may be taken into consideration by service providers when making decisions. Users have more decision‐making power when they are involved in negotiation (also known as participation or partnership) in which users and professionals work together to reach decisions (Hickey 1998; Poulton 1999). At the next rung up the patient participation ladder is the power of veto over decisions (Morris 1993). The highest level such ladders reach is user‐control or independent community initiatives (Hickey 1998; Office 1993). For this review, we look at partnership approaches to service provision, meaning service users working in partnership with mental health professionals, in user‐employee roles integrated with the usual mechanisms of mental health services. Within this there may still be varying degrees of power held by user‐employees. User‐employees may have control over their own work, or they may have a say in how the service as a whole is provided.

Involving users in mental health services has the potential to produce a number of benefits, and there is also the possibility of harmful effects from involvement. To ensure that benefits are achieved and harm avoided, the mechanism of involvement needs to be carefully considered, and practice needs to be guided by evidence on effectiveness. Such evidence can be found from comparisons of services provided by user‐employees with services provided by mental health professionals.

Users can be involved as user‐employees, providing adult mental health services. Users can be employed in roles specifically designated for them, such as peer support specialists or conducting structured clinical peer interviews (Mowbray 1996; Lecomte 1999). Users may be appointed to roles for which users or non‐users could apply, such as jobs in case management or outreach (Sherman 1991; Fisk 2000). User‐run programmes can be integrated into the mental health system, for example, user‐run drop‐in centres or social support programmes for service users discharged from hospital (Kaufmann 1993; Chinman 2001).

In studies that compare services provided by user‐employees with services provided by mental health professionals, the user‐employees are acting as the intervention. Thus, these studies allow comparison of outcomes for service provision and for clients. Mental health professionals and clients may have differing views on the importance of different types of outcome. For example, mental health professionals may place more importance on therapeutic outcomes for mental health than do clients. Clients may view other outcomes as more important, for example quality of life. We will report both of these types of outcomes.

Changes may be made to services as a result of user‐employee involvement. Differences in service provision may be shown in terms of times or locations of service provider meetings with clients. Such changes in service provision may lead to changed relationships between clients (recipients of services) and staff, or change in job satisfaction among professionals working in the service. Targeting services to different needs of clients may alter the cost‐effectiveness of those services.

Some clients may choose to receive services from user‐employees as the service could be more client‐centred. Clients may benefit from role modelling and empathy from user‐employees. However, some clients might prefer to receive services from professionals.

We aim to find existing evidence regarding any positive or negative effects for clients of user‐employees in mental health services. We will also look at service provision patterns. We will identify randomised controlled trials and other comparative studies of user‐employee involvement.

Being involved as user‐employees may benefit users personally, for example by empowering them, boosting self‐esteem or confidence, or increasing their social contacts. There may be a therapeutic value to their mental health (although most users would not see this as the main purpose of involvement, instead being concerned with their clients). There may be practical advantages, for example by enabling user‐employees to earn money, learn new skills and increase their employment prospects. However, the stress of being involved, or being around clients with similar problems to their own, may have a negative impact on their health. Studies in this review are not designed to test effects on user‐employees (as involving users as service providers is the intervention for the trial, and thus there is no comparison group of users who are not involved in service provision). However, as effects on user‐employees will be of interest to service users deciding whether to become involved in providing services, and also to the professionals deciding how to employ them, we will provide a narrative summary of these effects described in the literature. These effects may include health effects, psychosocial outcomes or skill development. We will also report evaluations of the process of involving users, for example the number of applicants for user‐employee roles.