Introduction

This chapter explores some key issues in doing service user-led research as well as you possibly think you can do it. It is about applying research theory. We aim to set out the methodological and practical details of a particular project we developed with a group of service users. In so doing, we explore how service user-led ideals can be translated into real-world research action, moving from theory to practice and from practice to theory. We aim to contribute to existing writing about the realities of collaboration in service user-led research, setting out how we pieced together a working method and how we were led by those we worked with. We use the recent Folk.us project titled ‘Past Caring, a carer-led narrative research project about carer bereavement’ as the case study example as it has current poignancy. Recent guidance suggested that ‘The involvement of carers in research … is of real value. It has the potential to contribute to a culture in mental health where carers are respected, included and valued as key stakeholders within the mental health system’ (Repper et al, 2012, p 28). We will not report here on the study outcomes relating to the phenomenon of carer bereavement, but rather focus on describing and reflecting on the development of better service user/carer-led research.

We asked the participant co-researchers in ‘Past Caring’ to reflect on their experience of doing this kind of carer-led, narrative research, and in this chapter, we also report what they said. We draw together participants’ reflections from comments made and recorded at the end of their interviews, and from six-month feedback questionnaires. These are of interest within the wider context of mental health service users in research as they reveal people's real emotional and practical experiences of being part of a service user-led research initiative with a narrative focus and give people with mental health and other issues a voice in the debates. The wider project revealed that stress-related difficulties and breakdowns were the most central feature of people's overall bereavement challenges. Mental health issues were live in our research in terms of people's past lives and their range of bereavement experiences.