The role of research ethics committees has expanded across the UK and North America and the process of ethical review has become re-institutionalised under proposals for research governance proposed by government. Ethics committees have gained a powerful role as gatekeepers within the research process. Underpinning the re-constitution of ethical guidelines and research governance, are a range of measures which protect institutional interests, without necessarily providing an effective means to address the moral obligations and responsibilities of researchers in relation to the production of social research. Discussion of research ethics from the standpoint of research participants who in this paper, are service users within health and social care, provides a useful dimension to current debate. In this paper I draw upon experiences of gaining ethical approval for a research study which focused on user participation within a community mental health service. I discuss the strategies used to gain ethical approval and the 'formal concerns' raised by the ethics committee. I then describe and discuss ethical issues which emerged from a participants' perspective during the actual research as it was carried out. These experiences are analysed using aspects of institutional ethnography which provides a framework to explore how the experiences of research participants are mediated by texts which govern the processes of research production. The paper highlights incongruities between the formal ethical regulation of research, and the experiences of research participants in relation to ethical concerns within a research process.
With an increased interest in and policy commitment to involving service users in the planning and delivery of health service provision, there is a clear need to explore both the rhetoric and realities of what user involvement entails. In the present paper, by drawing upon an evaluation of a community-based exercise facility for people with mental health problems, the authors explore ways in which the reality of user involvement is subject to a range of configurations within health services. The paper describes a piece of qualitative research that was undertaken within a participatory framework to explore the nature of user involvement within the facility. The data have been analysed using a grounded theory approach to provide insights into: the organisational context in which user involvement takes place; factors which encourage meaningful participation on the part of service users; perceived barriers to user involvement; and issues of sustainability and continuity. This research approach has enabled the authors to explore the views and experiences of users, service providers and referral agencies in relation to the nature and potential for user involvement. The findings illustrate ways in which user involvement may take place under both flexible and formal arrangements across a variety of activities. The present paper provides an account of some of the meanings and experiences of what 'successful' user participation may involve and the conditions which underpin 'success'. The authors conclude that successful and meaningful user involvement should enable and support users to recognise their existing skills, and to develop new ones, at a pace that suits their particular circumstances and personal resources. This process may require adaptation not only by organisations, but also by service providers and non-involved users.
AB S T R A C T User involvement has become a central tenet of government policy regarding health and social care. Likewise, the role of 'evidence' is seen as being at the heart of effective planning and delivery of health services (Our Healthier Nation, 1999). This paper examines the role of user involvement in evaluative research within the provision of an evidence base related to practice development. By focusing on the role of participatory research in the creation of an evidence base for healthcare provision, the authors explore the nature and possibilities of user involvement in providing an evidence base within a community mental health service. The paper identi es factors that may facilitate or inhibit user involvement and participation in evaluative research. It is argued that whilst the effective involvement of users may improve the quality and validity of research evidence, user participation in the research process is both contextual and contingent. For users to participate in the research process in a meaningful way requires changes in the way that research is commissioned and assessed so that the nature of user involvement may become viable. The authors suggest that the creation of evidence in health research is shaped by the social relations of the research process as well as by the methodologies used.
In this paper we explore the ways in which one innovative mental health service has attempted to address the issue of psychological accessibility and 'safety' for its users. Drawing upon an evaluation of a community-based exercise facility for people with mental health problems, and using a qualitative research approach, we explore the views of users, service providers and referral agencies to draw out those aspects of the service, which influence accessibility. Our findings emphasise the importance of the facility's non-institutional appearance, its community location, and the perceived (physical and psychological) 'distance' from medically based mental health services. Activities on offer are meaningful to service users and socially valued (and therefore non-stigmatising). Crucial to reducing any potential psychological 'risk' involved in participating in exercise regimes for vulnerable people is the relationship fostered between staff and service users, the level of individual support provided, and the flexible approach to users' progress.
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