Sarah Wright, Rachel Waters, Vicky Nicholls, and members of the Strategies for Living Project
- Published in print:
- 2004
- Published Online:
- March 2012
- ISBN:
- 9781861345141
- eISBN:
- 9781447303220
- Item type:
- chapter
- Publisher:
- Policy Press
- DOI:
- 10.1332/policypress/9781861345141.003.0002
- Subject:
- Sociology, Social Research and Statistics
The underlying principle for using user-led research in mental health has been widely documented. This type of research includes placing independent research that is designed and carried out by ...
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The underlying principle for using user-led research in mental health has been widely documented. This type of research includes placing independent research that is designed and carried out by people with direct personal experience of emotional and mental distress within the framework of emancipatory research. It aims to increase knowledge as well as alter the status quo, and to influence and change relationships. In mental health, user-led research has developed in the context of a world where people using mental health services have been traditionally asked to respond to very personal questions by outside researchers without any influence on the sorts of questions that get asked or what happens to the information that they share with the researchers. In this sense, user-led research is about people with experience of distress taking control of their lives. This is the context in which the Strategies for Living Project based at the Mental Health Foundation have developed. This chapter describes the ethical issues that arose during Phase II of the Strategies for Living Project. These ethical issues centre on participation, transparency and honesty, consent, payment, safety and confidentiality, ethics committee approval and methodology. It also outlines in more detail the implications of each of these ethical issues as they emerged within the Strategies for Living projects.Less
The underlying principle for using user-led research in mental health has been widely documented. This type of research includes placing independent research that is designed and carried out by people with direct personal experience of emotional and mental distress within the framework of emancipatory research. It aims to increase knowledge as well as alter the status quo, and to influence and change relationships. In mental health, user-led research has developed in the context of a world where people using mental health services have been traditionally asked to respond to very personal questions by outside researchers without any influence on the sorts of questions that get asked or what happens to the information that they share with the researchers. In this sense, user-led research is about people with experience of distress taking control of their lives. This is the context in which the Strategies for Living Project based at the Mental Health Foundation have developed. This chapter describes the ethical issues that arose during Phase II of the Strategies for Living Project. These ethical issues centre on participation, transparency and honesty, consent, payment, safety and confidentiality, ethics committee approval and methodology. It also outlines in more detail the implications of each of these ethical issues as they emerged within the Strategies for Living projects.
Rachel Cooper
- Published in print:
- 2017
- Published Online:
- September 2017
- ISBN:
- 9780262035484
- eISBN:
- 9780262341752
- Item type:
- chapter
- Publisher:
- The MIT Press
- DOI:
- 10.7551/mitpress/9780262035484.003.0009
- Subject:
- Psychology, Clinical Psychology
Psychiatric research currently faces multiple crises; one is that trust in reported research findings has been eroded. Concerns that much research serves the interests of industry rather than the ...
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Psychiatric research currently faces multiple crises; one is that trust in reported research findings has been eroded. Concerns that much research serves the interests of industry rather than the interests of patients have become mainstream. Such worries are not unique to psychiatry, but extend to many areas of science. One way in which such concerns can be ameliorated is via the development of more amateur/ citizen/ user-led research. I argue that promoting research conducted outside of traditional academic settings promises a range of benefits – both to the non-traditional researchers themselves and to others who want truths to be discovered. Having argued that it would be a good idea to have more user-produced research, I discuss how research by users might be facilitated or hindered by changes to the informational infrastructure of science. In particular, I discuss how different styles of classification, and rating scale, can facilitate the work of some research communities and set-back the work of others.Less
Psychiatric research currently faces multiple crises; one is that trust in reported research findings has been eroded. Concerns that much research serves the interests of industry rather than the interests of patients have become mainstream. Such worries are not unique to psychiatry, but extend to many areas of science. One way in which such concerns can be ameliorated is via the development of more amateur/ citizen/ user-led research. I argue that promoting research conducted outside of traditional academic settings promises a range of benefits – both to the non-traditional researchers themselves and to others who want truths to be discovered. Having argued that it would be a good idea to have more user-produced research, I discuss how research by users might be facilitated or hindered by changes to the informational infrastructure of science. In particular, I discuss how different styles of classification, and rating scale, can facilitate the work of some research communities and set-back the work of others.
Patsy Staddon
- Published in print:
- 2011
- Published Online:
- May 2012
- ISBN:
- 9781847427519
- eISBN:
- 9781447305590
- Item type:
- chapter
- Publisher:
- Policy Press
- DOI:
- 10.1332/policypress/9781847427519.003.0019
- Subject:
- Social Work, Research and Evaluation
This chapter examines a service-user-led research project focused on women's alcohol use and treatment provision. It involved visiting many alcohol treatment establishments, recruiting an advisory ...
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This chapter examines a service-user-led research project focused on women's alcohol use and treatment provision. It involved visiting many alcohol treatment establishments, recruiting an advisory group of other women who, like the author of this chapter, had had experience of alcohol issues in the past, and running two research projects. One focused on women who had or had had alcohol issues, and the other on GPs and treatment providers, about how they understood women's alcohol use and its treatment. The chapter describes many positive results that emerged from these research projects, such as ongoing links with statutory and voluntary sector alcohol treatment agencies, ongoing service-user-controlled workshops, meetings and events, and a helpline. In addition, the research itself indicated some reasons for difficulties in ‘getting doctors and the NHS to listen’ to women's alcohol issues, before suggesting ways that such difficulties may be overcome. Some alternative solutions to what has traditionally been seen as a ‘medical’ and/or a ‘moral’ problem are suggested, based on the findings of the two research projects.Less
This chapter examines a service-user-led research project focused on women's alcohol use and treatment provision. It involved visiting many alcohol treatment establishments, recruiting an advisory group of other women who, like the author of this chapter, had had experience of alcohol issues in the past, and running two research projects. One focused on women who had or had had alcohol issues, and the other on GPs and treatment providers, about how they understood women's alcohol use and its treatment. The chapter describes many positive results that emerged from these research projects, such as ongoing links with statutory and voluntary sector alcohol treatment agencies, ongoing service-user-controlled workshops, meetings and events, and a helpline. In addition, the research itself indicated some reasons for difficulties in ‘getting doctors and the NHS to listen’ to women's alcohol issues, before suggesting ways that such difficulties may be overcome. Some alternative solutions to what has traditionally been seen as a ‘medical’ and/or a ‘moral’ problem are suggested, based on the findings of the two research projects.
Marian Barnes and Phil Cotterell (eds)
- Published in print:
- 2011
- Published Online:
- May 2012
- ISBN:
- 9781847427519
- eISBN:
- 9781447305590
- Item type:
- book
- Publisher:
- Policy Press
- DOI:
- 10.1332/policypress/9781847427519.001.0001
- Subject:
- Social Work, Research and Evaluation
This collection draws together experiences and perspectives on user involvement from user activists, academics and practitioners. It includes chapters that focus on autonomous collective action by ...
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This collection draws together experiences and perspectives on user involvement from user activists, academics and practitioners. It includes chapters that focus on autonomous collective action by disabled people, mental health service users and others; action within the health and social care service delivery system to influence services; and user-led and collaborative research designed to promote ways of understanding the world from service users' perspectives. The book includes examples relating to the involvement of young people, young mothers, older people, people living with cancer and woman with alcohol problems, in addition to the experiences of disabled people and mental health service users. Chapters offer conflicting views, for example on the issue of whether the impacts of involvement can and should be ‘measured’. Some chapters offer a historical perspective, arguing for the need to understand both autonomous action and official involvement as interconnected processes of social change. The book highlights both the official acceptance of user involvement as a mainstream activity and the continuing challenges experienced by those seeking not only to have a voice, but also to achieve recognition for their knowledge and understanding. It concludes with a discussion of the continuing need for ‘critical perspectives’, both in the conduct of user involvement and in analyses of it. The book also argues for the necessity of including different perspectives in this process.Less
This collection draws together experiences and perspectives on user involvement from user activists, academics and practitioners. It includes chapters that focus on autonomous collective action by disabled people, mental health service users and others; action within the health and social care service delivery system to influence services; and user-led and collaborative research designed to promote ways of understanding the world from service users' perspectives. The book includes examples relating to the involvement of young people, young mothers, older people, people living with cancer and woman with alcohol problems, in addition to the experiences of disabled people and mental health service users. Chapters offer conflicting views, for example on the issue of whether the impacts of involvement can and should be ‘measured’. Some chapters offer a historical perspective, arguing for the need to understand both autonomous action and official involvement as interconnected processes of social change. The book highlights both the official acceptance of user involvement as a mainstream activity and the continuing challenges experienced by those seeking not only to have a voice, but also to achieve recognition for their knowledge and understanding. It concludes with a discussion of the continuing need for ‘critical perspectives’, both in the conduct of user involvement and in analyses of it. The book also argues for the necessity of including different perspectives in this process.
Harding Rachel, Whitfield Grahame, and Stillwell Neil
- Published in print:
- 2010
- Published Online:
- March 2012
- ISBN:
- 9781847427113
- eISBN:
- 9781447303497
- Item type:
- chapter
- Publisher:
- Policy Press
- DOI:
- 10.1332/policypress/9781847427113.003.0015
- Subject:
- Sociology, Social Research and Statistics
This chapter focuses specifically on service users' involvement as peer research interviewers. It points out that this approach, while part of a wider methodological commitment to challenging the ...
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This chapter focuses specifically on service users' involvement as peer research interviewers. It points out that this approach, while part of a wider methodological commitment to challenging the objectification of service users within research, represents just one method of doing so, and is notably distinct from ‘user-led’ research. It draws on two studies undertaken within the social housing sector to outline the rationale, methods and ethics of peer interviewing, and to assess its strengths, as well as its risks. It argues that through this research approach, benefits can accrue to the peer interviewer, the service user being interviewed, and the ‘quality’ of the research process and data gathered. It suggests that the benefits associated with peer interviewing are contingent on the effective management of the risks involved. It provides useful guidance on how best to minimise risk and maximise the benefits of peer interviewing, while also advocating further evaluation of the research approach.Less
This chapter focuses specifically on service users' involvement as peer research interviewers. It points out that this approach, while part of a wider methodological commitment to challenging the objectification of service users within research, represents just one method of doing so, and is notably distinct from ‘user-led’ research. It draws on two studies undertaken within the social housing sector to outline the rationale, methods and ethics of peer interviewing, and to assess its strengths, as well as its risks. It argues that through this research approach, benefits can accrue to the peer interviewer, the service user being interviewed, and the ‘quality’ of the research process and data gathered. It suggests that the benefits associated with peer interviewing are contingent on the effective management of the risks involved. It provides useful guidance on how best to minimise risk and maximise the benefits of peer interviewing, while also advocating further evaluation of the research approach.
