Peter Beresford

User Involvement in Research and Evaluation: Liberation or Regulation?

This article explores the progressive and regressive potential of ‘user involvement’ in research and evaluation, with particular reference to social policy. There is growing political and research interest in user involvement. This article critically explores key different approaches to user involvement in research and relates them to consumerist and democratic models of involvement in policy and practice, management and development. The article highlights the need to approach user involvement in research critically and systematically, taking account of the diversity of approaches that have developed and to take forward user involvement in research in equal association with service user organisations and movements.

The politics of participation

’Participation’ is one of those contentious words like ’community’ and ’care’ which can seem to mean everything and nothing. There is little agreement about its definition. Even its terminology constantly changes, for example, from ‘participation’ and ’empowerment’, to ’self-advocacy’ and ’involvement’. ’Participation’ generates enthusiasm and hostility in equal proportion. For some it is bankrupt; for others it offers hope. Interest in participation appears to be episodic. Currently we are going through another period when it seems to be heightened. According to our views on the subject, this may be

Commentary and Issues : Who knows best? Evidence-based practice and the service user contribution

This paper reviews the assumptions underlying traditional medical research and critiques the concept of ‘evidence-based practice’. In particular, it identifies and counters three basic tenets of this approach: the alleged need for objectivity in research, the notion of hierarchies of evidence and the primacy of systematic reviews. Instead, the paper argues for a new emphasis on ‘knowledge-based practice’, recognizing that the practice wisdom of health and social care practitioners and the lived experience of service users can be just as valid a way of knowing the world as formal research.

Service Users’ Knowledges and the Social Construction of Social Work

• Summary: This article considers the implications for social work and social care education, policy and practice of including the viewpoints and knowledges of service users. The development of policy and practice for user involvement is critically discussed and the role of service users and their organizations in the construction of social work explored. • Findings: Disabled people’s and service users’ organizations have developed their own knowledges, theories and models, based on their first-hand experience. This paper examines the implications of such users’ knowledge for social work and social care theory, policy and practice. It draws on discussions and developments in the disabled people’s and other movements whose members are the subjects of social work theory and practice. It is informed by the authors’ work and experience as service users, educators and practising social workers, as well as writers, activists and researchers in this field. • Applications: The article examines the progress that has been made in involving service users in social work education, theory building, research, practice development and standard setting. It explores some of the practical and philosophical issues involved in developing a more inclusive and socially constructed social work and suggests that this may offer a route to restoring social work to its core values.

User involvement, research and health inequalities: developing new directions

Placed in the context of broader discussions and developments about service user involvement in research and evaluation, this paper looks at the role that user involvement research may play in health inequalities research. It examines the pressures for and against such user involvement research, its different expressions and ideological relations, and what particular contribution it may have to offer in researching health inequalities. In considering how it may help in developing substantive understandings of these issues and the role it may play in the future, particular attention is paid to the issue of enabling the diverse involvement of service users in order not to reinforce existing exclusions and barriers in research, policy and practice.

Poverty and Disabled People: Challenging dominant debates and policies

This article explores the relationship between poverty, disability and impairment in a global context. It challenges dominant critiques of poverty and disability, and explores the critiques, policy proposals and developments of the disabled peoples movement to combat poverty. It offers an international perspective including the experience of both the North and South.

Disabled People, Service Users, User Involvement and Representation

ABSTRACT The issue of representation and representativeness has become central in debates about user involvement, disabled people and users of social care services. This article examines the emphasis of service agencies on the ‘unrepresentativeness’ of disabled people and service users; looks at how this is experienced by the latter and considers why the issue has gained such importance. It examines the different meanings attached to representation by recipients and providers of services. As well as looking at how the issue of representativeness is used to devalue, exclude and disempower disabled people and service users, the article explores its relation with the competing participatory and representative models and practices of democracy employed by disabled people and service providers.

Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact

While patient and public involvement (PPI) in health and social care research has progressed successfully in the last decade, a range of difficulties with the evidence base exist, including poor understanding of the concept of impact, limited theorization and an absence of quantitative impact measurement. In this paper, we argue that a paradigm change towards robust measurement of the impact of involvement in research is needed to complement qualitative explorations. We argue that service users should be collaboratively involved in the conceptualization, theorization and development of instruments to measure PPI impact. We consider the key advantages measurement would bring in strengthening the PPI evidence base through a greater understanding of what works, for whom, in what circumstances and why.

Service users, social policy and the future of welfare

This article considers the issue of public and service user involvement in social policy in particular relation to the increasing importance of populist approaches to welfare policy and ideology. It reports on the new emphasis on participation in social policy and the limits of involvement so far achieved in both the practice and discipline of social policy. It discusses the increasing commitment of welfare service users and their organisations to equal involvement in the social production of social care and social policy and the political and methodological problems of continuing to exclude them. It argues the importance of an inclusive approach to social policy as a discipline and practice both to counter the populism which has increasingly characterised and dominated social policy over the last 20 years and to provide the basis for progressive and defensible social policy for the future.

What Have Madness and Psychiatric System Survivors Got to Do with Disability and Disability Studies

This paper is about psychiatric system survivors, disabled people and disability. It is written from the perspective of a psychiatric system survivor as a basis for further discussion and action about our relationships with each other. In 1994, three of us presented a paper `Psychiatric System Survivors and the Disabled People’ s Movement’ at the World Assembly of the Disabled People’ s International in Sydney. Australia (Beresford et al., 1994) In 1996, three of us wrote a chapter asking the question `What has disability got to do with survivors?’ (Beresford et al., 1996). In both cases, we were all survivors of the psychiatric system. Two of us were also people with physical and sensory impairm ents. We wrote about the positive contacts and links we were making with the British Council of Disabled People and the disabled people’ s movement, about our shared issues and different histories, and about campaigning jointly for our civil rights. Now I want to ask a slightly different question: what have psychiatric system survivors , madness and distress got to do with disability, the disabled people’ s movement and, indeed, with disability studies and this journal, Disability & Society? In my view, answers to these questions are long overdue and there is increasing urgency for both disabled people and psychiatric system survivors to address them. Time has now passed since we ® rst embarked upon this discussion. There have been some positive developments since then, particularly at local level, like, for example, the initiative of Greater London Action on Disability to build links between disabled people, survivors and their organisations through the Common Agenda project. However, two other factors have prompted this paper. First, discussion about the nature of the relationship between disability, madness, distress and psychiatric system survivors does not seem to have progressed much since we initially explored it. Secondly, media and political perceptions of and responses to disabled people and survivors seem to be diverging in destructive and alarm ing ways.