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The aim of the research is to assess the extent and value of mental health service user (MHSU) involvement in research in England.

This is a knowledge review, including academic and “grey” literature, and documented testimonial evidence.

The involvement of MHSUs in mental health research has become mainstream. There is clear evidence that involving MHSUs in research adds value. Four gaps in the literature were identified. First, a lack of evidence from non-service-user researchers about their experience of working with MHSUs. Second, a lack of recognition that anyone involved in research may hold more than one role. Third, failure to treat carers as separate from MHSUs, or – often – to include them at all. Fourth, a lack of understanding that MHSUs may have a useful role to play in research on topics other than mental health.

The literature would benefit from some evidence about non-service-user researchers’ experiences of working with MHSU researchers. Carers should be recognised much more widely as different from MHSUs and with a valid role to play in mental health research from their own perspectives. MHSU researchers, and carer researchers, should be offered opportunities for involvement in research on topics other than mental health.

The evidence shows that involving service users in research can benefit everyone involved and the research itself. The process can be challenging for all concerned. However, there is now plenty of guidance about how to involve service users in research for maximum benefit to all (e.g. Faulkner, 2004b; SURGE, 2005; Morgan, 2006; Tew et al., 2006; Kotecha et al., 2007; Schrank and Wallcraft, 2008, pp. 243-247; Leiba, 2010, pp. 160-169; Armes et al., 2011; Morrow et al., 2012, p. 114). This guidance should be consulted by researchers, funders, ethics committees, and other stakeholders at the earliest possible stage of any relevant project.

It is essential to recognise and acknowledge that anyone involved in research may hold more than one role. Embracing multiple and mutable identities is not an easy process, as the literature shows, and attempts to do so are likely to produce resistance at every level. Nevertheless, the example of the survivor researchers suggests that doing this has the potential to enrich our individual and collective experience, and therefore society as a whole.

The paper is written by an independent researcher who is also a carer for people with mental health problems: a viewpoint which is rarely found in the literature. The literature suggests that power imbalances and identity issues are at the root of most difficulties and gaps. Social identity and categorisation theory offers a useful theoretical perspective. The paper will be of value to anyone interested in mental health research, whether as a student, service user/survivor, researcher or teacher.

In 2008, Mind in Bexley received a research development grant from the Big Lottery Fund and a training grant from Bexley Care Trust to empower service users to participate and contribute to a pilot research project. The project aims were to work with, develop, train and support service users as researchers, in order to record the narratives of service users who have common experiences of mental health distress and treatment. The research development project set up an advisory group, created and developed a partnership with the University of Kent and provided workshops and training sessions to explore some of the principles of research and ethics. In addition, the group undertook a preliminary literature review, developed and refined a research questionnaire and piloted interviews with six service users. Many issues were raised and lessons learned during the planning and conduct of the project. This paper discusses the process and reflects on aspects of the project's design and delivery. In addition, this paper highlights some of the difficulties in undertaking service user research and suggests recommendations as to how to overcome some of these complex issues.

The purpose of this paper is to discuss learning about service-user and carer involvement from an action research (AR) study into self-directed support implementation in one English mental health trust. The paper promotes appointing and supporting carers and people with experience as co-researchers to obtain authentic local perspectives when undertaking service implementation or redesign.

The researchers used an AR spiral method incorporating carers and people with mental health experience as co-researchers. The co-researchers worked alongside the lead researcher gathering data from focus groups, training sessions and other meetings over four years and attending collaborative steering group meetings alongside professional workers throughout the study.

The authors suggest that participation gave co-researchers a powerful and effective voice in this service redesign. This approach revealed more authentic research data and required professionals to be more accountable for their perceptions and to make explicit their understandings throughout the study, which enabled more effective working. Steering group participation was central to securing this participation.

The paper illustrates how carer and service-user co-researchers can be supported to benefit both mental health organisations undergoing change and to co-researchers themselves. It also identifies AR’s utility in uncovering learning as well as structuring change.

The purpose of this paper is to describe learning gained from involving service users and carers as researchers in an action research study. The researchers aimed to introduce self‐directed support in mental health services – part of the government's personalisation agenda, which requires a move from current social care commissioning, where a person is matched to available services, to one where a person self‐assesses, has an agreed support plan and then with appropriate help, purchases his or her own services to lead as independent a life as possible. This development is allied closely with the mental health service recovery approach.

Three service users and two carers were recruited to work alongside the lead researcher. Service users were fully involved in the steering group – part of participatory action research project. Data were collected from: debriefing meetings with co‐researchers between April and December 2007; a group interview held by the lead researcher; and participants' journal comments and self‐reflections.

The main areas in which service users and carers found involvement difficult were: overcoming professional language barriers; emotional impact; and power imbalances between themselves and professionals. Findings suggest that considerable improvement is required by mental health professionals and managers if service users and carers are successfully involved in projects.

This is a small study within a larger action research project. Findings are not generalisable owing to the small sample; however, findings are supported by the service‐user involvement literature.

Few studies explore participation effects on service users and carers from their perspective. This research provides insights into what needs to be addressed to improve service user and carer involvement to improve mental health services.

User involvement in research is entering the mainstream of traditional mental health research. In practice, there are diverse ways in which the process of involvement is experienced by mental health service user researchers. This paper aims to explore two diverse experiences of involvement by the researcher.

Auto-ethnography is the research methodology used in this study; it combines a process of reflective writing and critical analysis which enables the author to explore experiences of being both a service user and academic researcher. Two accounts of the author’s involvement in mental health research are presented: one which builds on a consultation model and the other based on co-production principles.

Experiences of power-sharing and collaborative decision-making, alongside disempowerment, are discussed, leading to exploration of the theoretical and practical processes for promoting participation of users in research.

The research is limited because it is undertaken by one individual in a local setting, and is therefore is not generalisable; however, it provides useful insights into the diverse processes of involvement that many service users experience.

Recommendations are presented to support the involvement of service users in research, with final remarks offered considering the possible future implementation of this still emerging tradition.

This paper reflects on the experiences of one service user academic involved in research and highlights diverse experiences of both empowering and disempowering involvement, providing recommendations for best practice.

The application of user involvement in the design and implementation of research has progressed through various frameworks and is an increasingly recognized and expected as a key element of ethical research methodologies. The practice of engaging users (the public, patients, service recipients, etc.) beyond the traditional scope of subject, and elevating their role as partner or co-designer of the research process, is theoretically rooted in civil rights and social justice ideologies. The success of these types of models are influenced by various factors including the people involved, their capacities and values; the physical and funding environment in which the research occurs and the approaches used to engage. In theory, user involved research is most successful when the people, approaches and environment are genuinely interested and centralized around inclusive methods that posit that populations researched have the right to contribute to research done and researchers have the ethical responsibility to engage them using measurable strategies. User involved research frameworks have the potential to create a space that both values and uplifts historically marginalized voices, while touting the demonstrated advantage of improved effectiveness in research outcomes and implications. Yet there exists a dissonance between theory and practice in the field, due to a lack of consistent understanding, practices and standards tied to the approach.

Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions.

Experiences of engagement as co-applicants in research funding applications, of involvement as research study team members, and as co-researchers were gathered from a range of service user and carer experts. Consultation and a workshop gathered further evidence from a range of stakeholders across the research management community.

Service users and carers, who contribute to the research protocol and process, feel a strong sense of responsibility to ensure the high quality of a research study. However, they may be new to their roles, status and key responsibilities when acting as project team members, co-researchers or co-applicants engaging in funding applications. The responsibility of sponsors, grant holding organisations, funders and other members of the research community is to communicate with and support service users and carers in those roles. More needs to be done to understand the contractual, a legal and governance issues and responsibilities that are specific to service user and carer co-applicants, project team members and co-researchers, from both an organisational and individual service user and carer perspective.

The implications of the findings are to raise awareness of the practical, legal and ethical issues arising from this type of involvement and the potential risks arising from lack of cohesion or understanding. The review also highlights the concerns and barriers service users and carers may find in becoming involved.

The findings highlight a range of issues for research regulators, sponsors and investigators to consider to ensure service users and carers can fulfil their responsibilities and be supported in doing so.

This paper aims to discuss the experiences of a group of eight user and carer researchers from learning disability and mental health services who worked together in a research project. The research was to find out about the changes that took place as over 300 people moved from hostel accommodation into independent tenancies. These moves were part of a three year project involving a partnership between a local authority and a housing association.

The evaluation was based on a model of user participation.

User involvement in research can mean different things with different levels of involvement, from consultation through to user‐controlled research. In this paper the authors discuss some of the challenges in doing this kind of evaluation study, as well as the opportunities that came from involving users and carers in the research. This includes how the researchers got involved and some of the activities they did.

The authors also describe some of the difficulties that were faced, including payments and criminal record checks. The ways in which people were trained and supported to take part and stay involved are outlined as well as how the group feel that they have learnt new skills and increased their confidence.

This paper adds the voices of the co‐researchers to the literature and provides “lessons learned” for other researchers in this area.

While the involvement of service users in mental health research has increased, a review of the literature suggests that this apparent increase in involvement does not necessarily coincide with service users having a ‘louder voice’ or greater control over service delivery.The purpose of this investigative study was to explore the barriers and support systems for service user‐led research within a local NHS trust. The study focused on an original research project that set out to be service user‐led by designing and piloting an evaluation tool to measure satisfaction with care planning across the trust. The paper describes a qualitative methodology that captured stakeholder's experiences of why the original project did not reach its intended conclusion. Interviews were conducted with a range of professionals and service users, alongside participant observations of steering group meetings. Data were analysed using a grounded theory approach that led to the identification of key lessons for those intending to involve service users in research in the future. The findings suggest that there are many support systems that can assist service user‐led research, but there are still too many barriers to implementing it effectively; in particular, processes surrounding ethical approval and the stigma attributed to such research by some professional staff.The lessons learned are presented to assist in the education and training of mental health service user researchers or professionals who are conducting research collaboratively with service user colleagues.

There are many examples of consumer involvement in NHS research but few studies have examined the impact of this on service development or the research process. This study, involving service user and carer researchers working alongside professional researchers, aimed to examine the development of one service user and carer research group in a mental health Trust.

The research involved a review of existing literature on consumer involvement in research, a review of user involvement in research in South West Yorkshire Mental Health NHS Trust, a survey of consumers and NHS staff in the Trust, and a skills audit and training needs analysis of consumers.

The study identified the range and extent of consumer involvement and the impact of this on consumers and the Trust. Service users and carers were involved in a range of projects, mainly on the level of consultation or collaboration. The benefits for consumers were principally on a personal level and included gaining knowledge and experience, improved sense of well‐being, self esteem, and confidence. The benefit for the Trust was in having a service user perspective and focus. However, there is a tendency to omit service users from planning and setting priorities.

The study pointed to the need to build the evidence base on consumer involvement in research, particularly in terms of how consumers can impact on setting research priorities and selecting appropriate methods. It identifies the need for more training for consumers and for NHS staff and for a more coherent strategy.

This article will be of value to anyone who is at the start or in the early stages of their journey of consumer involvement. It identifies some of the practical issues faced by consumers and staff in working collaboratively, but also points to the benefits for all the stakeholders.