Our experiences are presented through four themes and sub-themes (see Fig. 2). Although distinct these categories overlap; relationship building, the impact of stigma and how different expertise was valued were all particularly consistently addressed in accounts. The context of our work was a multi-site clinical trial that was experienced as ‘complex’ including being granted a funding extension in 2019.
Recognising the importance of emotional work
Acknowledging emotions
Understanding why and how relationships are central to involvement work required awareness of, and attending to, emotions with which people arrive, and those that are stimulated by the work itself, regardless of a person’s project role or title.
I am not an academic. I am a mother wading my way through the mental health system, so it’s an emotional journey too. (Account B, LEAP member).
Not everyone wanted to share emotions openly, while others welcomed the opportunity to do so. Understanding people’s preferences was part of team development.
I learnt to develop respect for the differences that existed and for some that might mean more disclosure than for others. (Account D, LEAP member).
Emotional challenges
Using personal experiences in PARTNERS2 challenged emotions in different and unexpected ways. One researcher found it surfaced complicated feelings about their past.
The role and identity of being a ‘service user researcher’ on PARTNERS2, has at times created an internal tension for me, particularly with the transition of the project to a site where I’d previously accessed secondary care services. Once I would have been the one waiting in the reception area of the Community Mental Health Team; I have felt at times that I am now ‘on the other side’. (Account N, SURA).
Our collective emotional safety relied on people accepting different approaches to using lived experiences and recognising the varied professional skills, that both LEAP members and research staff, brought to the project.
I remember being frustrated with one-member sharing details about their family member …. I felt very judgemental and resentful that they were taking up time sharing; I did not think it was what we were there for … (Account D, LEAP member).
Compromises and emotional journeys
Work as service users and carers can never be hazard-free and involves compromises.
We were trying to decide on which outcome questionnaires participants would be completing. I felt very conflicted. One of the favoured questionnaires asked about work and claiming benefits. I could see from a researcher point of view why this choice made sense. But I felt I was betraying service users because recording outcomes about benefits and work-related issues can cause stress and raise fears that people might lose benefits. (Account K, LEAP member).
Where perspectives from lived and academic experience conflicted, this could be emotionally draining. Research staff also found LEAP meetings emotionally challenging.
[LEAP members] emphasised the need for substantial changes …. I found the comments difficult to hear. I think because I had worked hard on the resources, following the empathetic stance I developed. It was humbling to see the benefit of the changes I had been blind to before the LEAP suggested them. (Account I – Research Fellow).
The journey also included periods of absence and returns to work for some. Learning from mistakes was key to our project.
For me personally, [it has been] a roller-coaster ride, with handrails that, at first, were not screwed in properly. But, from every bump and crash, we learned how to find our balance and not risk tipping the whole thing over. Learning to be flexible, but mindfully. (Account G, PPI Co-ordinator and Peer Researcher).
Developing safe spaces to create and share knowledge
Establishing trust
To become fully involved and contribute experiential perspectives to research team members needed to feel safe (psychologically and physically) which required open and trusting environments within PARTNERS2.
As LEAP members we were viewed as having skills and a unique perspective. Engaging with each other, researchers, and administrative staff, produced new insights, trust-building and created a positive working environment. (Account H, LEAP members).
Initially most contact was face-to-face meetings; LEAP applicants met local research staff and each other. For service user researchers, the initial phase included establishing relationships with colleagues in three different employing organisations: an NHS Trust, a University department, and a research charity.
Careful planning and working with group dynamics
Practical arrangements and settings for meetings were important, affecting relationship formation and the meeting atmosphere. This affected how research staff felt, and whether they shared relevant personal experiences or not.
I assumed a role of academic researcher and felt both connection and disconnection to other people around me [because of my own mental health experiences]. There was so much discussion and work around PPI in the project that this position of being “Inside Out” felt very strange. (Account O, Research Assistant).
LEAP groups developed different cultures, arising from relationships between individual members, group dynamics and the venue. One LEAP member, moved groups after relocating and stated:
The first LEAP felt like a family and was based in a community venue, almost like walking into a neighbour’s house. It felt safe. The second LEAP feels much more formal. Meetings are held on secure university premises. We work together as colleagues, rather than family. (Account E, LEAP member).
We also sought opportunities to bring people together for key decision-making sessions, such as selection of trial outcome measures: co-applicants, research staff, and LEAP members. To encourage reciprocal discussions, we carefully planned meetings.
[we tried to involve everyone by] altering seating arrangements in team meetings to mix people up; exercises to equalise power in meetings, sharing personal interests and skills; collecting feedback to revise processes. (Account A, PPI Lead).
Building confidence and skill sharing
Establishing stable, inclusive, and friendly groups helped equip LEAP members for difficult aspects of their roles. Challenges included being unfamiliar with the research processes, including concepts and language (terminology, acronyms, and jargon).
At times I felt hugely out of my depth. (Account K, LEAP member).
LEAP members were conscious that their experiences added valuable perspectives to research. Lack of confidence worried people, but over time capacity to engage grew. Several people brought other transferable skills.
We also learnt from each other and acquired skills to use in other roles, including trustee of a local drop-in centre. (Account H, LEAP members).
Understanding the challenges of using personal identities in research work
Lived experience identities
For both LEAP members and researchers, drawing upon expertise from experience to contribute to research explicitly requires the individual to be open about an identity they hold. We brought many additional identities to our research work, some linked directly with mental distress, others not. There is, however, a danger of not allowing or facilitating all these identities, which can leave people feeling only partially engaged or useful.
I joined a PARTNERS2 LEAP as someone who has used mental health services, but I also brought other identities, some more visible than others: carer for my mum, ethnic minority background, gay man, Muslim …. Research will benefit from including all those perspectives, but only if I feel safe, and can choose whether, and how, to reveal them. (Account E, LEAP member).
Ambiguities and disclosure
Researcher job descriptions did not always correspond with self-perceptions of identity, and placed limits on their overall contribution to PARTNERS2. Some lived experience expertise within the research team remained undisclosed, concealed behind a job title.
Being labelled as a “normal” researcher negated my own insights from actually having mental health experiences - simply because it wasn’t in my job title or expected of me. This made me feel uneasy in the sense of being labelled as an outsider in our LEAP, by people in the group stereotypically labelled as outsiders themselves …. None of this was ever discussed openly. (Account O, Research Assistant).
Using experiential expertise in a university department or an NHS facility workplace involved a risk for researchers, of being seen to occupy a lower position because of a mental health diagnosis. Managing this tension could be stressful.
Being a ‘service user researcher’ has often seemed to work in many different and contrary ways within PARTNERS2. Sometimes as an asset, one example being a resource to draw upon in conversations with potential participants, including participating GP practices. At other times there has been a sense of appearing somehow of less ‘status’ within the academic hierarchy. (Account N, SURA).
Such ambiguities had not been anticipated and could lead to strained relationships across the team, as well as internal struggles for individuals.
“Them and us” divisions
We became increasingly aware of disadvantages through labelling researchers as either part of the PPI team or not, unintentionally developing a ‘them and us’ division. Tasks became unnecessarily compartmentalised as either ‘academic’ or ‘personal experience’ work. Roles and identities overlapped.
I draw on my personal experiences to contribute to many aspects of the study, as well as carrying out the tasks of an academic researcher. (Account F, LEAP member / SURA).
The research team response to the service user researcher job title and associated identity varied. In one site researchers felt that having ‘Service User’ added to their ‘Research Assistant’ job title created unhelpful differences.
There was a sense that the title of ‘service user researcher’ was too narrow. It could be detrimental to a researcher’s career, and lead to ignoring other qualifications and experience. (Account M, three Research Assistants).
Thus, a strength of teamwork was the acceptance of ‘messiness’ in PARTNERS2 involvement work. This enabled deeper thinking: binary approaches to identity were challenged allowing team members to reflect on assumptions they made about each other.
Although these sessions weren’t always easy - I felt judged as an academic for not being ‘one of them’ (Account I – Research Fellow).
Positively, staff working openly with their own lived experience helped address gaps between different cultures, assumptions, knowledge, skills, and motivations that operated within the wider team, as experiential and professional expertise were exchanged.
I feel it’s absolutely crucial we have service user researchers on board directly. Roles that form a bridge between service users/carers and academics. They understand where we are coming from. It could be said they wear two hats, bringing our motivational differences together … I think the service user researcher role reduces the gap between us and them in important ways. (Account B, LEAP member).
Working to share power within research hierarchy
Empowerment
Power differentials and hierarchy were recognised as barriers to achieving collaborative work in practice. This was not seen as insurmountable.
Where possible, projects should strive towards mutual agreement between academic experts and those with ‘expertise from experience’. This reduces the perception of the superiority of academic and clinical knowledge over experiential knowledge. (Account L, Two LEAP members and a Research Assistant).
Joining a research team was one way of making positive use of experiences through being heard and believed, feeling useful and wielding influence.
Work within PARTNERS2 has enabled me to add value to my difficult health experiences and positively redefine ‘mental illness’, overcoming the detachment from a working society. (Account C, LEAP member).
However, more could have been done to continually assess how to integrate different expertise across the team.
It was empowering, but we could bridge the gap even further between academics and people with personal experience of the topic being researched. We saw few senior staff at the LEAP meetings, which was unfortunate as we could have learned a lot from each other. (Account H, LEAP members).
Overall, this work valued and respected the expertise that each person brought to a project. Researchers gain expertise from LEAP members and vice versa.
While I had understood the issues from reading literature, LEAP members’ stories about losing support that they depended on, and distress over losing relationships with trusted practitioners, brought the issue to sharp focus. (Account I, Research Fellow).
Limits on power-sharing
Running a mental health research programme, brought into focus the challenges of co-producing work.
I guess any project like PARTNERS2 is very complex and messy, and it certainly has been. (Account K, LEAP member).
There are examples of positive involvement and shared decision-making but there are also examples where we struggled to co-produce.
We seek collaborative and transparent decision-making, but can feel disconnected and disempowered by decisions taken. (Account F, LEAP member and SURA).
Due to the inherent power imbalance within research, our involvement plan did not allow PPI to disrupt established research culture, limiting its impact.
Individual ‘breakthroughs’ in reciprocity and relationship building can feel short-lived …. We have no shortage of ideas or goodwill but changing research cultures fundamentally remains a huge challenge. (Account A, PPI lead).
However, actualities of pragmatic compromise in our work were acknowledged.
[As a service user researcher,] I am much closer to day-to-day decision-making. In theory, I have more ‘power’ to shape and direct the project. However, the practicalities of my role have made me far more aware of the need for compromise and pragmatism. (Account F, LEAP member / SURA).
Involving everyone in everything was not feasible. Agreeing a clear framework for decision-making and transparent rules and practices was helpful, but in our experience not a complete solution.
LEAP members were included at all stages of the project, but as always the research process gave members the impression of being listened to but not having the final say. This was partly due to the logistics of quarterly meetings, but also a result of academic hierarchy. (Account L, Two LEAP members and a Research Assistant).
Attempts to distribute power
Across the study, efforts were made to address power imbalances. For example, LEAP members chairing meetings. Successful outcomes from collaboration included, the development of the study website (content, design, video scripts), selecting the trial primary outcome and developing a core outcome set. The latter two both involved consensus workshops with iterative voting and extensive discussion. This power sharing involved acknowledging different experiential, ideological and epistemological positions within the team.
[Some of the researchers and I] were working from different starting points in terms of expertise on methods, mental health and activism. I advocated for broader conceptualisation - from ‘illness’ towards ‘well-being’. (Account G, PPI Co-ordinator and Peer Researcher).
Commitment to shared decision-making, at times caused confusion and necessitated extended communication. This operated at several different levels but aimed to be transparent. Over time, the limits of decision-making were recognised and appeared accepted. This may have been due to ongoing development of trust.
Assessing our progress
We compared our experiences against established PPI and co-production principles (see Fig. 3). Most of our accounts emphasised working together, inclusive approaches, respecting as well as valuing knowledge from all involved, open discussion, and relationship building. We wrote less about impact, communications, governance, and ground rules, although several accounts clearly focussed upon power-sharing.