What follows is a job description for a participatory researcher.
It was written by both service users and carers within the mental health project.
Researcher Job Description
The purpose of the service user/carer researcher is to address shortcomings of research conducted by traditional non participatory methods. Oliver (1992) argued that research had failed disabled people in three main ways:
- to capture and represent the experiences of disabled people from the perspective of disabled people themselves,
- to generate useful information or contribute to the improvement of living conditions for disabled people,
- to acknowledge the experiences of disabled people and the social/political aspects of disability.
By service users becoming active participants in all areas of research and taking control of the research process these imbalances and failings can be redressed. Service user and carer participation and empowerment leads to emancipatory research, described by Beresford and Wallcraft (1997) as changing and equalising the power relationships between researchers and research subjects.
The lived experience as a service user or carer and the expertise that generates is applied to the breadth of the research process, and the boundary between the researcher and research subject is dissolved. The process of carrying out research becomes as important as the product it produces. This is a continuing reflective process reflecting a moving and developing role.
The idea that service users and carers are “experts by experience” is central to the role. They are people who have another perspective to bring to the experience, challenging assumptions and bringing enrichment of perspective.
- Good listener and sensitive to participants. The ability to hear someone else’s story, and put other people first before your own story.
- Valuing the other person and their experience. Not promoting your own agenda.
- Being empathetic.
- Optimism. Generated through ‘being in recovery’. People in the group feel that they are ‘in recovery’.
- Reflective learning. We can continually draw from, and learn from each other.
- Reflexiveness and open mindedness. A fluidity in approaches and understandings is required along with an awareness of discrimination.
- Trust, honesty and commitment, respect for confidentiality.
- Treating people with dignity and respect.
- A desire to improving things for the greater good and identifying with this. Taking back power and influencing things.
- Knowledge base of research and services, theory practice and research (Generated through training?).
- Lived experience as a service user carer or, as is often the case, both.
- Need for flexibility and responsiveness around the health of participants’ needs and ability to contribute may vary and this must be accommodated.
- Both participants and the research in general benefit from valuing peer support.