Experts by experience: how service users shape research

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By Rebecca Ince

Co-production is a big buzzword in research at the moment. Anyone involved in social research - particularly in the fields of health and social care - has some appreciation of the value of and ethical imperative for knowledge that is produced in collaboration with service users, or ‘experts by experience’. Things are still fuzzy when it comes to understanding exactly how co-production influences the research process and the knowledge produced. Researchers are sometimes understandably confused about what constitutes ‘good’ co-production, how to incorporate it into a project, and what to do with the perspectives gained from peoples lived experiences. Without a research context in which experiential knowledge is valued as equal to – if not greater than – other forms of knowledge such as technical, financial or ‘scientific’, co-production runs the risk of being tokenistic or performing basic ‘reality checking’ function and the richness and value of that knowledge can be lost.

Our research into mental health crisis support provided by the voluntary sector has co-production built into it at multiple levels:

  • Our study steering group (SSG) monitor our progress and approve any changes to the research. The SSG includes people who have used services and people who have cared for someone in a mental health crisis.
  • Our research team includes five researchers who have lived experience of a mental health crisis and of accessing services and support.
  • We consult a Service User Reference Group (SURG) every three months. This is a group of nine individuals of diverse demographics and viewpoints, who oversee our research as ‘critical friends’.

As we approach the end of the first phase of our research I want to illuminate some of the ways that service user involvement – specifically the Service User Reference Group - has already significantly impacted and improved our research, both conceptually and methodologically.

Temporal, cyclical and personal:
shaping our conceptual understanding of mental health crisis

One of the first meetings of our SURG concerned how we should conceptualise a mental health crisis. We hoped to explore the relationship between how a crisis was understood and what support was being offered by voluntary sector organisations (VSOs). Our initial framing of crisis pitched it as a ‘turning point’ (based on Michael Hobbs’ work on crisis theory back in 1984), - an event offering potential for growth and maturation alongside distress and a need for urgent help.

We took the ‘turning point’ concept to our SURG to see whether it resonated with their experience of crisis, with some ideas from an initial literature search that included biomedical approaches focussed on risk, symptoms and behaviours, as well as subjective, personal and emotional experiences of crisis.

The SURG challenged and stretched these ideas using their own experiences of crisis and using services. The discussion centred on the following:

  • Whether or not ‘turning point’ was too positive a term – it was felt that the negative and potentially damaging experience of crisis should not be overshadowed by the idea of an opportunity for positive change;
  • The temporal dimension of crisis – crisis as a process over time including ‘testing times’, a build-up of stress, and a resulting inability to cope;
  • The difference between the crisis process over time and an emergency event or incident (e.g. suicide attempt) – the emergency was considered a consequence of a lack of appropriate support at an earlier point;
  • The difference between a first crisis and subsequent crises for those living with long term mental health issues – the first crisis being scarier and potentially more dangerous without previous experience and coping strategies in place, and subsequent crises seen as part of a cycle, not isolated events.

As a product of these discussions, the research team’s understanding of the crisis experience was enhanced, providing us with a better framework for questioning how, when and for whom a VSO might provide support. This guided the literature review in its later stages and impacted how we questioned national stakeholders about their views of crisis support.

Perspectives on crisis change over time:
refining our methods when interviewing service users

The discussion regarding the time span of crisis, as well as the different experiences of people experiencing first or subsequent crises, led to a consensus among the group that perspectives on the crisis experience change significantly over its course. Views of what was helpful in terms of support, as well as willingness to talk and engage with researchers would, therefore, vary depending on the point they are at including:

  • at or shortly after the most acute part of the crisis,
  • whilst seeking/receiving support or intervention,
  • having recovered for a period of time and reflected on the support or intervention.

Bearing in mind that the perspective of the person experiencing the crisis may change, it was also noted that the person experiencing the crisis is not necessarily the person who identifies it as a crisis or seeks help. It was pointed out that in some peoples’ experiences they did not think they needed or wanted support until later. The SURG successfully argued that we should undertake repeat interviews at a 6/9 month interval to capture these changes in perspective.

In summary, these themes and perspectives from our SURG discussions have collectively impacted multiple areas of the research. They have shaped the development of our theoretical framework for understanding crisis, and changed our process for interviewing service user participants. This has ultimately led to an application for a project extension to allow for repeat interviews with service users.

These are just two of the ways in which our SURG have influenced and improved our research so far – illustrating that where co-production is embedded in a project in a systematic way, it creates channels through which tacit, experiential knowledge can have significant conceptual and methodological impacts which improve the quality of academic research.
We will explore the SURG’s contribution further in a follow-up Viewpoint in due course.

The contribution of the voluntary sector to mental health crisis care in England is a project funded by the National Institute of Health Research (NIHR). The ideas expressed in this Viewpoint are the author’s personal views, not those of NIHR.