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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.

The purpose of this paper is to explore the limitations of the current research paradigm in mental health, particularly from a recovery perspective, and to suggest an alternative approach to clinical research which may be more in line with recovery principles.

The paper will first review the dominant research methodology utilised by the mental health disciplines, discussing some of the limitations of this approach, particularly from a recovery perspective. Existing research methodologies which embody recovery principles will then be outlined, before an alternative, more recovery-oriented, approach to research is discussed.

The findings from this paper suggest that the current research paradigm utilised by the mental health disciplines may not be producing the most optimal results, and that a more recovery-oriented approach could help add to the value of this research, while also involving service users and their carers in the research process in a more meaningful way.

This paper will explore possibilities for undertaking recovery-informed research, which has implications, not only for researchers, service users and their families, but also for the practice of mental health disciplines more broadly.

This paper will introduce a critique of traditional research methodology in mental health and will present an alternative recovery-oriented approach which could help to overcome some of the limitations of the more traditional approach.

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.

A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines.

PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project.

The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation.

The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.

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 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.

The purpose of this paper is to outline the development of a training package for service users and carers with an interest in NHS health and social care research. It demonstrates how the developers used their unique experience and expertise as service users and carers to inform their work.

Service users and carers, NHS Research and Development Forum working group members, supported by health professionals, identified a need for research training that was tailored to other service user and carer needs. After reviewing existing provision and drawing on their training and support experience, they developed a training package. Sessions from the training package were piloted, which evaluated positively. In trying to achieve programme accreditation and training roll-out beyond the pilots, the group encountered several challenges.

The training package development group formed good working relationships and a co-production model that proved sustainable. However, challenges were difficult to overcome owing to external factors and financial constraints.

Lessons learnt by the team are useful for other service users and carer groups working with health service professionals. Training for service users and carers should be designed to meet their needs; quality and consistency are also important. The relationships between service user and carer groups, and professionals are important to understanding joint working. Recognising and addressing challenges at the outset can help develop strategies to overcome challenges and ensure project success.

The training package was developed by service users and carers for other service users and carers. Their unique health research experience underpinned the group’s values and training development.

The purpose of this paper is to examine the role of service user and carer involvement in NHS research and describe the nature of this involvement in three specialist mental health Trusts. It also aims to discuss the value of service user and carer involvement and present the perspective of the service user and research manager.

The paper reviews patient and public involvement policy and practice in the NHS and NHS research. It examines the effectiveness of involvement activity and utilises a case example to demonstrate the impact of patient/service user involvement on the NHS and the individuals who take part.

The paper concludes that service user involvement is essential if research is to support the development of health services that clearly reflect the needs of the service user and impact positively on service quality.

Service user involvement is an established element of NHS research and development at both national and local level. The Department of Health strategy for research, Best Research for Best Health, reiterates both the importance of research that benefits the patient and the involvement of the service user in the research process. Despite this, the changes in Department of Health support funding for research, introduced by the strategy, may inadvertently lead to some NHS Trusts experiencing difficulty in resourcing this important activity.

The paper illustrates the effectiveness of successful patient and public involvement in research. It also identifies how involvement has developed in a fragmented and uncoordinated way and how it is threatened by a failure to embed it more consistently in research infrastructure.

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 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.