Here are a few snippets and a link to an excellent article written by Emma Perry.
People with lived experience of mental distress have traditionally been excluded from the process of knowledge production that guides thinking, policy and practice in relation to mental health. Research in this field continues to be dominated by clinical frameworks and positivist methodologies that position service users and survivors as the objects of study. However, Russo & Beresford have argued that the social sciences and humanities have also excluded people with lived experience from research and reproduced inequalities by positioning service users/survivors as ‘outsiders’. People with lived experience are often asked to share their stories and the knowledge gained from these experiences, only to find them reinterpreted by an ‘expert’ and “colonised or reduced to a new area for academic activity”.
Over the last 25 years, ‘survivor research’ has grown and developed at a rapid rate. Sharing its political roots with the service user activism that seeks to challenge the psychiatric system and the dominance of the medical model of mental illness, survivor research aims to generate forms of knowledge production that focus on lived experience. Key milestones in the development of the area include the first survivor-led research programmes, Strategies for Living and User Focused Monitoring. Survivor edited works have also been published, including This is Survivor Research and more recently, Mental Health Service Users in Research.
Studies that focus on experiential knowledge and the perspectives of the service users and survivors themselves continue to be marginalised within mainstream research. However, an increasing number of user/survivors are now centrally involved in research in mental health in England. There is also a growing knowledge base which is developing through the discipline of Mad Studies in addition to the development of theories and evidence generated by users and survivors. It is also clear that when user/survivor generated philosophies and methodologies are employed a very different kind of evidence emerges. For example, in relation to perspectives of electroconvulsive therapy and experiences of recovery under the 2008 Care Programme Approach.
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