User controlled research informing teaching
Service user controlled research is an important source of knowledge about mental wellbeing and ill-health. Service user and carer involvement in learning and teaching about mental health is increasingly promoted across the disciplines. Yet (confusingly for students!) this may be in the context of a broader programme which promotes very limited views about what knowledge 'counts'. These pages set out to provide a resource for educators and trainers with an interest in integrating service user controlled research into their teaching about mental health and/or research through:
- facilitating access to some of the key user controlled studies carried out over recent years; and providing some pointers to the use of this material in learning and teaching contexts.
- providing references to articles and books which examine the importance of user controlled research itself and the key issues surrounding it.
This section of the website has been set up to support a workshop 'User led research: transforming learning and teaching about mental health' to be hed at the Centre of Excellence in Interdisciplinary Mental Health on Tuesday 16 February 2010. It is an evolving collection of resources. Please contact us with items to include and feedback on how you have made use of service user controlled research in teaching.
The report of a major survey looking at how people in emotional distress take control of their lives. Service users led the initiative and over 400 people completed detailed questionnaires designed to explore what helps them cope as individuals. Based on the central belief that we are all the primary experts in our own mental health, the report uses people's own words to describe their experiences of medical treatments, alternative and complementary therapies, religious and spiritual beliefs and personal coping strategies.
Have you drawn on this? How might it be of use in teaching? Contact us.
Following on from the Knowing Our Own Minds survey of users and survivors of mental health services, a team of survivor researchers and interviewers carried out in-depth interviews with over 70 people with experience of mental distress. This is the first report to emerge from those interviews. Giving depth and detail to the findings of the first survey, this report identifies people's main supports, coping strategies and sources of help, and concludes by offering recommendations for service development and staff training.
Have you drawn on this? How might it be of use in teaching? Contact us
Users' Voices 2001
Diana Rose
A review of the Sainsbury Centre for Mental Health's groundbreaking work in user-focused monitoring. These wholly user-controlled projects sought the views of people seriously disabled by mental health problems on community and hospital care. Over 500 users participated in the research. The report gives a detailed account of the method and looks at issues such as CPA, medication, crises, user involvement, advocacy and complaints. It concludes with a set of user-defined standards for good mental health care and a short list of key recommendations to move mental health care forward in the direction of user-sensitive change.
Richard Bodman, Rosie Davies, Nancy Frankel, Lea Minton, Lyn Mitchell, Christiane Pacé, Ruth Sayers, Nigel Tibbs, Zena Tovey and Elise Unger
The origins of this research lie in the personal experience of one team member who lost her job as a result of mental illness. This loss was deeply painful and utterly disrupted future expectations. In time, it led her to submit a successful application to Strategies for Living1 to do research in this area. A research team of ten was formed.
A trigger for developing students' understanding of the importance of occupation in the maintenance of mental wellbeing, and the impact of loss of occupation in contributing to mental ill-health? Other ideas? Contact us.
The research for Coping with coming off set out to find out what happens when people do try to come off psychiatric drugs: the effects of withdrawal and what helps people to succeed. The research was carried out by people who had experience of coming off psychiatric medication, in two stages: Short interviews with 204 people using questionnaire;and in depth interviews with 46 people using a topic guide.
A trigger for promoting debate about service users' rights to make choices and receive information and support; also their knowledge about the side-effects of psychiatric medication and awareness of the importance of acquiring knowledge in this area?
Powerpoint presentation - Jan Wallcraft
Coming Off Psychiatric Medication website
Mental Health, Citizenship and Recovery 2005-6
Sue Mc Bean
Sue was employed by The Centre for Citizenship and Community Mental Health as a service user research worker. She carried out a year long project working with people who have experience of using mental health services. The project was service user led throughout. The research was entirely planned, organised and carried out by a team of 8 trained researchers who all have experience of emotional distress or mental health problems.
Scottish Recovery Network's Narrative Research Project 2007
The research draws on the experience of 67 people across Scotland to highlight factors that helped and hindered their recovery from long-term mental health problems. It highlights several common elements which were found to be helpful for recovery. One of the largest qualitative narrative research studies on recovery in Scotland and worldwide.
Research carried out in partnership - between service users and academics
Review of Consumer Perspective on Electro-Convulsive Therapy 2002
This Review set out systematically to describe and summarise consumers' perspectives on ECT and to understand the sources and nature of the controversy about ECT between some consumers and professional bodies representing practitioners of ECT. It was carried out by the Service User Research Enterprise at the Institute of Psychiatry.
A trigger for promoting understanding about the contested issues surrounding the use of ECT; also of approaches to researching treatments and debates surrounding evidence based practice?
Service Users' Experiences of transition through mental health services - 2006
need to find link to the whole report
This research was commissioned by the Birmingham and Solihull Mental Health Patient Public Involvement Forum. Its aim was to investigate mental health service users experiences of transition through services and make recommendations for service improvement in supporting people in transition. The research was carried out in 2006 by a Suresearch research team of service user and academic researchers.
A trigger for promoting debate about people's expectations of services and issues around assertive outreach and pathways through mental health services?
Service user involvement in research - key references
NB Researching in Mental Health: Sociological and Service User/Survivor Perspectives. The Sociology of Mental Health STudy Group will be hosting a joint seminar series with the Survivor Researcher Network in the academic year 2008-9. Further details
Report written by Shaping Our Lives for INVOLVE. User controlled research has been developed by service users and their organisations as a new approach to undertaking research and evaluation. The aim of this project was to find out more about the definition, nature and operation of user controlled research. It was carried out both through a literature review and through information provided directly by a wide range of service users and service user researchers in a series of individual interviews and group discussions.
The TRUE (Training in Research for service Users: Evaluation) Project was commissioned by INVOLVE to carry out research to scope training provision in the UK relevant to consumer involvement in research: to identify what elements are effective, and to develop a good practice guide.
All the staff that make up the Service User Research Group for England (SURGE), the service user arm of the UK Mental Health Research Network (MHRN),' resigned at the beginning of December 2008. When they left they made a public statement about their reasons for leaving.
Paper by Jasna Russo. Considers the importance of user-controlled research on coercion and proposes some topics for investigation.
Service user involvement (SUI) in health care research is now firmly established in the NHS but few attempts have been made to find out about prisoners' experiences of mental health care in prison or to encourage their involvement in this research.This review looks at how models of service user involvement in health research could be applied in prisons.
This report describes the realities of supporting user-led research as experienced by the Strategies for Living II team, at the Mental Health Foundation. It includes the achievements and challenges of this process in relation to issues of: power; roles and relationships; ethics; resources; and training. The report also outlines the lessons learned from these experiences, using examples and stories to illustrate points, and includes tips and recommendations.
Links
Service User Research Enterprise: SURE was launched in 2001 on the premise that the research priorities and perspectives of service users were different from those of people who work in mental health services, and from those of people with solely an academic background. It is now one of the largest units within a university in Europe to employ people who have both research skills and first-hand experience of mental health services and treatments. SURE undertakes research that tests the effectiveness of services and treatments from the perspective of people with mental health problems and their carers. It aims to involve service users in a collaborative way in the whole research process: from design to data collection, through to data analysis and dissemination of results.
Service Users in Research:(formerly SURGE) supports mental health service users, clinicians and academics as they work together on mental health research.
Shaping Our Lives: Shaping Our Lives National User Network is an independent user-controlled organisation. It started as a research and development project but became an independent organisation in 2002. It works with a wide and diverse range of service users.
SureSearch: A network of Service Users in Research and Education, based in the West Midlands. SureSearch welcomes as members users and survivors of mental health services and their allies who have experience and/or an interest in mental health research and education.
INVOLVE: A national advisory group, funded through the National Institute for Health Research (NIHR). Its role is to support and promote active public involvement in NHS, public health and social care research.
Survivor Research: Survivor Research specialises in foregrounding the perspectives of Black and Minority Ethnic service users and survivors in the thinking and innovation around mental health, well being and recovery. A group of independent workers offering consultancy services in mental health and undertaking research.
The Narrative Practitioner: Developing research in education, research and practice. Organises regular conferences which include a range of papers from service user/survivor perspectives.