— Discussion and Analysis
Ideas of and issues in participatory research including overcoming barriers.
Summary
Done with care, coproduction research remains the one way to build mental health services that fit real lives. The reward is real too. In doing it, we take the slow road because the quick one doesn’t get us to where we want to be. The people we work with have waited long enough to be heard. The least we owe them is the patience to do it right, and the courage to act on what they tell us.
Abstract
Consumer and carer involvement in mental health research is a growing and developing field. Whilst there has been policy and in-principle support for such involvement from governments around the world, lived experience researchers conducting academic research in partnership with other consumers and carers remains uncommon.
Abstract
This article offers some personal reflections from a mental health service user/survivor researcher working in English academia. It is a critical examination of what mainstream clinical mental health researchers and funders appear to need us to be, and what some in the service user and survivor movement perceive us to be. The discussion examines questions about commodification and public and patient involvement and contemporary challenges for service user and survivor research as a separate discipline operating within and beyond academia in England.
The article concludes by exploring potential strategies for collaborative activism for service user and survivor researchers in academia based on the concepts of social capital and situated solidarity.
Abstract
The body of knowledge referred to as ‘survivor research’ has grown significantly in recent years, challenging the basis of mainstream mental health knowledge and most recently manifesting in the emerging field of enquiry known as ‘Mad Studies’. The roots of these developments lie in the experiential knowledge of service users engaged in sharing their experiences and knowledge, often through peer support.
I aim to challenge some of the assumptions underlying what we think we know about mental health from the mainstream mental health disciplines; and to demonstrate the value of experiential knowledge in helping us to reach a better understanding of mental health and mental distress. This article explores the nature of, and challenges to, mental health knowledge and evidence, drawing on the work of survivor researchers and people contributing to the emerging discipline of Mad Studies.
Summary
Marie Brown, Ph.D., and Nev Jones, Ph.D., join Dr. Dixon and Dr. Berezin to discuss steps to build a pipeline of researchers with significant psychiatric disabilities and intersecting lived experiences and to increase service user participation in the U.S. mental health care system.
Topics include:
- Background of advocacy to have people with lived experience in mental health research positions.
- A paradigm of what meaningful participation would look like.
- Should the same standards of participation and inclusion apply to other research areas?
- Is research disconnected from practice?
- Steps the research community and academia can take to address these issues.
- Self-disclosure of psychiatric disability/lived experience.
- Deepening engagement of service user participation within the mental health system.
- The “radical roots” of the concept of peer support.
- What relational psychotherapy has to do with deepening engagement and service user participation.
- How Dr. Brown’s experience with the Hearing Voices movement has informed her work.
- Activities designed to deepen engagement and help build a diverse lived experience pipeline.