Making activism a participatory, inclusive and developmental process: a research programme involving mental health service users

Abstract

Understanding real-world experiences and issues is a priority for research funders, yet there are challenges in directly engaging with people for evaluation and investigation of the professional services they receive. Much professional work takes place within institutional restrictions, arising from legislation, policy and local practices. Collaborative research is therefore complex but relevant for improving services. This research programme started in 2002 with focus group research, led by occupational therapists based in a local National Health Service trust and a university, followed by eight further projects including a Photovoice project. This programme and our perspectives from reflections suggest we do not always know who we are, what we want or who cares about research outcomes, but it is important to embrace the potential of activism, to energise and focus people for positive action, wherever they are based.

Keywords:

• User involvement
• occupational therapy
• participatory action research
• research programme

Acknowledgements

This article is dedicated to the memory of Colin Dean, a mental health service user and activist who supported this research programme in many ways, and is sadly missed by us and many local people who joined him on his guided walks. The authors would also like to thank all those involved in the research programme and acknowledge funding and support from Central and North West London NHS Foundation Trust, Brunel University, University of Essex, UKOTRF, The Elizabeth Casson Trust, and the Institute of Social Psychiatry.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The research received funding and support from Central and North West London NHS Foundation Trust, Brunel University, University of Essex, UKOTRF, The Elizabeth Casson Trust, and the Institute of Social Psychiatry.