Work package 4: being a co-researcher and doing co-research on the PROSPER study

Context of work package 2

Drawing upon a ‘collective autoethnographic’ approach, this chapter attempts to convey the realities of a co-researched project and offer reflective perspectives on that experience. It is co-authored by the five PROSPER co-researchers. We explore some of the contemporary discourse around research co-production while describing how lived-experience co-research was implemented in practice. How well the PROSPER co-research endeavours went – the good and the not so good – are considered and recommendations made for future co-production projects involving those with lived experience of SV. We draw upon the work of Survivors Voices (https://survivorsvoices.org), a national survivor-led organisation which offers insights, principles and guidance for best practice when engaging those with lived experience of interpersonal abuse and trauma. The chapter is infused with first-hand accounts from the co-researchers that capture the personal experiences of being a co-researcher and the act of doing co-research.

When I joined the PROSPER team as a co-researcher, I quietly held on to the hope that I would be seen and heard, valued, and respected, for all the unique things I am beyond my trauma. I had no interest in being an added element of the project to simply fulfil a PPIE remit or to be there to demonstrate a progressive research approach.

I am pleased to say I felt heard and understood, and I was met as a whole being. Perhaps because of this, I believe the co-researchers were able to honour and amplify the voices of study participants – by being able to meet them where they were, and to holistically welcome and hear and heed their experiences.

My hope is that co-researchers can now play a part in ensuring that participant voices are heard way beyond the research team, peer-reviewed articles and academia ... by those using sexual violence support services and those who have the power to improve them.

Hidden in plain sight

Given the prevalence of SV as detailed elsewhere in this report, it is likely that most research teams will, knowingly or otherwise, have team members who have been subjected to SV. However, talking openly about such experiences remains taboo and is both explicitly and implicitly discouraged. Revealing lived experience to colleagues within a professional context, risks altered perceptions of ability, pre-conceptions around ‘victimhood’, expectations of vulnerability and mental health instability. An ‘othering’ can quickly ensue, which is known to be damaging:

‘The othering has the effect of reinforcing the sense of injustice you feel … You find yourself positioned as “damaged”’.74

Thus, many lived-experience researchers remain hidden in plain sight. Some may consciously choose this, but for many it may be the fear of ‘othering’ that perpetuates silence. Articulation of lived experience often remains unheard out of necessity and while the impact of lived experiences on research design, delivery, analysis, dissemination and translation may quietly infuse and impact the work that many researchers undertake, it frequently goes unnoticed, uninvited, unappreciated, undervalued and unrecognised. The voice of lived experience within research is, it would seem most often, ‘by invitation only’.

The patient and public involvement and engagement in research imperative

It is increasingly accepted that more participatory, collaborative lived-experience involvement within research is not only fundamental to the integrity of that research, but is a moral, ethical and social imperative. There remains an ongoing debate, however, regarding exactly how that lived-experience participation is best facilitated. The discussion around this is not new. In 2009, Sweeney et al.75 explored the history and evolution of service user research (including co-production and co-researchers); the different forms of user participation in research; the methodological and epistemological approaches underpinning participatory research; and the relative merits of the data and evidence emerging from these.

Thirteen years on, the discussion continues. Co-production, and the embedding of lived-experience co-researchers within research teams, is gathering favour as the preferred ‘way to go’ and is advocated by research stakeholders, policy-makers and funders:

But the future is not simply about doing more of the same … The practice of co-production which is more often applied to service design and improvement merits further exploration in relation to research as a way to foster partnership, reciprocity and openness.76

The drive towards co-research has emerged in response to concerns that the engagement of ‘the public’ has often been restricted to tokenistic advisory or consultative approaches, to sensationalist testimonials and to invitations to ‘tell your story to help us understand’. Even mandated allocation of project funds to PPIE, despite its best intention, carries the risk of perpetuating box-ticking public involvement – researchers cognisant that this may be the difference between successful/unsuccessful funding applications.

Sustained concerns around the potential for, at best tokenistic, and at worst, harmful, PPIE, were addressed by The National Institute for Health and Care Research (NIHR) within their strategic review of public involvement in research.76 Their report recommended that a research culture shift towards more inclusive, authentic and fully participatory ‘co-production’ could become a means of evolving and improving the nature of public involvement in research:

Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge.77

Evaluation of co-produced research

While the appetite for co-production is growing, there is still much to learn. Evaluation of co-produced research must therefore be integral to the project, while not detracting from the day-to-day implementation of that co-production. Robust and relevant, but not cumbersome and distracting, valuation tools and processes are required to support the development of a body of evidence around best co-production practices. It is incumbent upon research teams to offer up honest and transparent reflections on how the co-production project was implemented, what went right, what went wrong and how to do things next time. Intentional, creative, far-reaching dissemination of evaluation outcomes and the sharing of co-producer experiential reflections are key to closing the gap between co-production ambitions and co-production realities.

In the spirit of the PROSPER team’s ambition to enlist in a meaningful way the knowledge and expertise of those with lived experience at every stage of the project, it seems relevant and appropriate in this chapter to utilise the work of a victim-survivor-led organisation – Survivors Voices – to aid the discussion of PROSPER co-research endeavours.

In 2018, Survivors Voices developed a charter for engaging victim-survivors in projects, research and service development.78

The Charter’s central tenet is that:

All work with all people affected by abuse and trauma needs to look unlike and be the opposite of abuse – otherwise it can inadvertently replicate the dynamics of abuse and cause harm.

The charter offers seven principles for good victim-survivor engagement which expand upon and illuminate this ‘antithesis of abuse’ and identify how organisations can ensure that victim-survivor engagement:

• is safe
• is empowering
• amplifies the voices of victim-survivors
• promotes self-care
• is accountable and transparent
• is liberating
• is creative and joyful.

The expectation to meet criteria such as these is neither novel nor revolutionary. For example, Turner and Beresford79 identified five dominant principles of empowerment, emancipation, participation, equality and antidiscrimination that are fundamental to victim-survivor research.

What is insightful about the charter, and what renders it so pertinent to PROSPER co-research, is the delineation of harmful dynamics of interpersonal abuse as a means of guiding research teams in the provision of co-production opportunities that are intrinsically and intentionally the polar opposite of abuse dynamics. An abuse and trauma-sensitive approach of this nature has the potential to increase the integrity of interpersonal violence research and to improve the safety of co-researchers, researchers and research participants alike. It also holds a gift: a restorative and healing potential for co-researchers.

Utilising the principles of the charter, Survivors Voices then went on to develop an assessment and evaluation tool.80 The Survivor Research Ladder provides an evaluation framework for organisations to measure the level of engagement of victim-survivors across the life of a research project. The ‘rungs of the ladder’ outline the potential roles of victim-survivors in research. How this might look in practice is considered in terms of degrees of involvement in planning and decision-making; the proportion of researchers that are victim-survivors; the proportion of study data that are elicited directly from victim-survivors; to what degree victim-survivors contribute to data analysis; and what level of involvement victim-survivors have in the dissemination of research findings. We will return to this ladder towards the end of the chapter as a means of assessing the level of engagement as perceived by the PROSPER co-researchers within the study.

Rationale for co-researcher involvement in the PROSPER study

The notion of co-production as an integral aspect of PROSPER was mooted early in the study development process. PPIE consultations took place and two lay advisor PPIE representatives were engaged as co-applicants – one of these identifies as a survivor of SV. During early discussions between the original study team and PPIE representatives, the desire to further engage individuals with lived experience beyond lay advisory roles – this time as co-researchers – gathered momentum. The desire to meaningfully employ the voice of lived experience became an essential aspect of the PROSPER study. In the original proposal, the research team expressed an aspiration that co-research would be an embedded element of the research design, offering the following benefits:

• meaningful co-production wherein the voices of victim-survivors are heard
• empowering to victim-survivors
• obtaining meaningful data
• promoting learning and development of new skills among co-researchers.

While these intentions implied shared benefit, they came with an inherent risk: presumption, paternalism and patronisation. The presumption that the co-researchers had not already had their voices heard and that they needed empowerment, new skills, development and learning. The paternalistic risk that the researchers knew ‘what was best’ for the co-researchers. The risk of patronisation wherein apparently kind or helpful intentions of meaningful involvement betrayed a perceived superiority. The challenge for, and the expressed intentions of the research team, was to avoid these risks. Those with lived experience of SV are, after all, and contrary to prevailing reductionist stereotypes, much more than those lived experiences. Victim-survivors are three-dimensional human beings who bring with them a multitude of personal and professional experiences and skills. It was entirely possible that those responding to the call for applications to become co-researchers were already feeling empowered, knowledgeable, skilful, seen and heard. Research informed by the lived expertise of victim-survivors should recognise their multilayered abilities beyond their abuse experiences.81,82

Co-researcher recruitment

Fuelled with the acknowledgement of potential risk, and the intention of avoiding it, in November 2020, the research team set about recruiting the PROSPER lived-experience co-researchers. The team aimed to recruit four, one for each of the project case study sites. The posts were advertised using the research team’s extensive networks in the third sector and within NHS and social services. The COVID pandemic moved all interviews online. The service user co-applicant was closely involved at all stages of recruitment and was a key member of the selection panel.

The advertisement detailed that the co-researcher role would include:

• offering knowledge and experience of the issues being researched
• co-facilitating interviews with victim-survivors of SV
• helping to recruit victim-survivors to the study
• assisting in the development of research materials and tools
• assisting with data analysis
• attending some research meetings
• helping to develop publicity around the research
• helping to support/attend activities to promote the study findings.

Remuneration

The role was advertised as a paid position, lasting approximately 18 months with the desired commitment of 1–2 days per month, with flexibility around time worked. The remuneration was confirmed as meeting the contemporary NIHR INVOLVE guidelines (with the hourly rate subsequently being increased mid-project to reflect inflationary increases) and all travel and incidental expenses would be met.

Appointments

Such was the calibre of applicant pool that out of the 13 candidates who reached interview, 6 were offered a co-researcher post. One of these was unable to proceed with the post due to competing commitments. The five remaining co-researchers remained as active members of the project through to completion. The co-researcher post was open to men and women. However, despite efforts to ensure the invitation was accessible to all, including extensive links to specialist support services for men, all appointees were female – four white women and one black woman.

The range of professional and personal experiences of the appointed co-researchers was extensive and varied (see Appendix 3).

Co-researcher training

Training and regular supervision/mentorship were built into the project design. Co-researchers received bespoke and generic training. A draft training plan was developed in collaboration with the co-researchers once they were appointed in recognition of co-researchers being able to identify their own knowledge gaps and training needs.83 The service user co-applicant was also actively involved in the development and delivery of the training.

Mentorship

Each co-researcher was allocated a mentor and monthly optional meetings between co-researcher and mentor were scheduled. The overarching desire was to provide regular opportunities for debriefing and ongoing support to encourage the emotional and physical well-being of the co-researchers. The intention for the mentor–mentee relationship was that it would be an egalitarian and mutually beneficial one (the mentor perhaps gaining enhanced empathetic listening skills, insight, scope for self-reflection, sense of achievement and development of leadership and mentoring skills). It was encouraged that the relationship and mentoring activity should be owned and driven by the mentee and that she was regarded as an equal partner in the process. Guidance was provided to mentors regarding the establishment of a trusting relationship, appropriate boundaries, practical action planning and learning support for the mentee and the safe and timely management of ending the mentorship relationship.

Co-researcher roles/activity

Team meetings

Monthly, remote, hour-long reflexive team meetings for researchers, the PPIE representative, project administrator and co-researchers were well attended throughout the project. Co-researcher participation in discussion at these meetings was voluntary. Practical and project administration topics were tabled as required, but these meetings soon established themselves as a space for all manner of discussion and reflections – at times project related, at times related to other national and international research activity and engagement opportunities. These online meetings became an important opportunity for personal and collective check-ins about well-being and ‘life in general’ – elements of team relationship building that would ordinarily take place within a workspace, but that were conspicuously absent from the project due to the wide geographic spread of the co-researchers and the impact of COVID on in-person meetings.

Away days

Coronavirus restrictions somewhat hampered the establishment and nurturing of relationships within the team for almost a year. Once permitted, meeting in person was considered a vital opportunity to catch up on lost time and missed connection. Four overnight opportunities in Birmingham were provided for the research team and the co-researchers to come together in person. Each event combined focused, pre-determined project work with down-time opportunities to build and nurture relationships within the team. Each in-person event was purposeful, task oriented and with a pre-defined agenda (see Appendix 4).

Research activities

Co-researchers were offered opportunities to undertake multiple research tasks. Participation remained the choice of the co-researchers who were free to decide with which elements of the project they felt able to engage. An appreciation existed regarding co-researcher competing time commitments, varying degrees of confidence in personal skills and research knowledge, current states of well-being and personal life responsibilities. There was an ever-present understanding that choice prevailed. Implicit in this approach was that the co-researchers’ membership of the team, and their engagement in meetings and discussions, was enough. All additional work was a bonus and an asset. Training, support and encouragement were on offer to assist co-researchers to undertake tasks that may initially have felt ‘out of their comfort zone’.

The tasks undertaken by the co-researchers included, but were not limited to:

• reviewing and editing participant-facing documentation
• reviewing plans and contributing to shaping the victim-survivor-focused recruitment approach, interviewing structure and methods
• working on victim-survivor-focused engagement – informing and assisting development of timeline and agreed approach about how to better use social media and other networks to engage victim-survivors in the study
• discussing and shaping the strategy for engagement of different groups (e.g. people who have not used services, people with communication needs)
• conducting interviews with victim-survivor participants
• interview transcript data coding, thematic analysis, mapping project objectives, using descriptive statistics and qualitative analysis of open text responses
• authoring elements/chapters of the NIHR report and case study write-up
• preparing and presenting to the team an early indicative analysis of provider survey data
• designing and delivering training on trauma, keeping participants safe and how to work with someone who has been triggered into a trauma response
• producing a video representation of example victim-survivor ‘journey’ through services
• disseminating and presenting findings at conferences
• monthly attendance and contributions to team reflexive meetings
• attending in-person task-oriented ‘away days’
• attending other meetings, for example, steering group
• engaging in the co-researcher evaluation creative project.

Co-researcher involvement in victim-survivor interviews

Mid-way through delivery of the project, interviews with victim-survivor participants commenced in each of the four case study areas. While some interviews took place in person, many moved online because of COVID. Appropriateness of co-researcher involvement was assessed regarding any conflicts of interest and, while offered to all, participation remained the choice of each co-researcher. Members of the research team provided teaching on qualitative methodologies, theoretical principles and interviewing techniques. A researcher/co-researcher pair held a mock interview, which was video-recorded and shared with the team. Mentors were also available pre interview to help with preparation for the interviews and respond to any queries regarding the interview process.

Of 31 victim-survivor interviews, 16 of these involved co-researchers. Timing and other commitments precluded the involvement of co-researchers in all interviews.

Prior to all victim-survivor interviews, time was allocated for co-researchers to meet with the researcher for pre-interview preparation. This included a mutually negotiated decision regarding who would lead the interview, and which questions the co-researcher would ask, if any. The option for the co-researcher to simply be present but not actively questioning the participant was always an option – albeit this did not happen in practice. The choice remained as to whether the co-researcher declared her lived-experience status, but all research participants were aware that one of their interviewers had lived experience of SV. Time was made available for a post-interview debriefing between the researcher and the co-researcher and opportunities for further debrief and support were available via fellow co-workers, other team members and mentors. Victim-survivor interview successes, concerns, points of interest and recommendations were often part of monthly reflexive meetings during the interviewing period.

Additional creative co-researcher evaluative work

Throughout the course of the PROSPER project, the impact that becoming a co-researcher was having on the individuals concerned was often discussed. It seemed that the co-research experience was taking on a ‘life of its’ own’ alongside the main PROSPER study. Insights were being revealed that could potentially help inform and enlighten the landscape of lived-experience co-production – enriching future research design and delivery, the engagement of participants, the analysis of data and the dissemination of outputs. In recognition of the unique opportunity that was evolving, additional funds were successfully applied for to enable the co-researchers – using a broadly autoethnographic approach – to capture their lived experience of working on PROSPER. The additional funding was secured through the Social Care: Opportunity for additional work call in October 2021 that was open for competition to NIHR award holders for projects funded by the Efficacy and Mechanism Evaluation, Health Technology Assessment, Health and Social Care Delivery Research and Public Health Research programmes.

Co-researchers received an honorarium payment and project monies granted to cover employment of a project co-ordinator, engagement and payment of artists, dissemination events and interactive workshops. Co-researchers were offered full autonomy to select their creative method and to engage their chosen artist/s, thereby maintaining agency and control over the personal information incorporated into the artwork and the production process. All creative outputs would be brought together, along with a series of process narratives, into a suite of resources to be made widely available to researchers, would be co-researchers, victim-survivors, service providers and funders.

A highly regarded expert in the field of violence against women and girls (Lisa Ward), currently working, amongst other things, as a lived-experience consultant, was appointed as Research Associate (RA) to co-ordinate this discrete part of the PROSPER study (see Lisa’s website for profile: www.iamlisaward.com). All co-researchers were involved in and agreed with the appointment. The RA rapidly settled into the post and fostered supportive working relationships. Project ideas were gathered, a call-out to artists was placed and a time – and budget – to target plan was set out. Project timelines were agreed, budgets shared and explained with transparency and a weekend retreat was organised for the co-researchers to come together, discuss, share and offer narratives regarding their creative processes. A variety of artists and creative process were chosen by the co-researchers, including one collage artist, a textiles artist and two multimedia artists. One co-researcher felt unable to engage with the creative process or an artist and instead wrote a narrative piece. A prize-winning author was engaged to attend the reflective retreat to explore and listen to the reflections of the co-researchers and create a narrative piece around the co-research experience. A two-person dance company also attended the retreat and, working with a documentary film maker, created a visual, lyrical, storytelling performance piece as a novel evaluation output for dissemination events.

How well did we do? The voice of the co-researchers

We now return to the seven principles of good engagement iterated in the Survivors Voices Charter78 and the PROSPER co-researchers offer up their perspectives regarding how closely these principles have been honoured within their co-research journeys:

Safe: … the first priority for engagement is a safe environment that begins with providing attentive listening and connections that are warm, collaborative and relational, which recognise and minimises triggers and may include safety protocols. Dedicated time is given to building trust and safety with individuals and victim-survivor groups.

The PROSPER environment – team members, ethos and co-research ambitions – was largely (indeed overwhelmingly) – experienced by the co-researchers as a very safe environment. There was an explicit emphasis on the importance of trust and safety from most team members. Nevertheless – and perhaps inevitably – in any space involving a collection of humans, especially those unknown to each other – there were moments where some co-researchers felt this safety was compromised either by circumstance or by less trauma-sensitive individuals. At best, these interactions were insensitive and at worst potentially retraumatising. Fortunately, these were very few and far between and ultimately offered a chance for reflection, learning and training opportunities.

The biggest circumstantial compromise to a sense of safety for some of the co-researchers was caused by COVID pandemic restrictions on travel and in-person meetings. Restrictions that were perhaps exacerbated by budget limitations. For some, the enforced reliance on online meetings made it difficult to feel completely safe within a large, unknown and geographically widespread team. It left one co-researcher initially unable to feel ‘anchored’ within the team and unable to access the full warmth and safety of colleagues until such time that in-person meetings became possible. While there are many known benefits of remote working – convenience, cost, environmental friendliness and flexibility – COVID-enforced remoteness reinforced the importance of safe connection and in-person relationship building for those with lived experience of interpersonal violence (which is intrinsically disconnecting, unsafe and relationship-damaging).

Co-researchers reflected that their experience of facilitating the victim-survivor interviews depended on the person conducting the interview from the research team. Mostly they felt fully integrated and almost leading the interview process, with autonomy over which questions to ask and when. However, a couple of the co-researchers experienced a suboptimal level of trauma awareness on occasions. Those affected felt that the lived-experience engagement fitted neatly into the realms of box-ticking tokenism, leaving them questioning the purpose and value of their involvement. One event left the co-researcher feeling like ‘a bit of a spare part’.

Safety within a team can also be compromised by the inherent risk within any project whose core purpose is to explore aspects of SV, and which necessitates engagement with other people with lived experience. A tension exists between the desire to ‘minimise triggers’ while simultaneously creating a space that welcomes and encourages ‘release and amplification of victim-survivors’ voices, experiences and expertise’.78 During the study, there were occasions where sharing experiences could be triggering and hugely distressing for those listening, with the consequent potential for those sharing to experience shame and guilt for speaking out. Such events are destabilising and require sensitive reparation. Within the PROSPER project, this highlighted that such experiences can feel especially painful within a space that has been explicitly defined as safe and where sharing of experience has been welcomed. These events prompted reflections by some co-researchers surrounding their own emotional and ‘place-in-the team’ safety. However, the core team encouraged honest experiential reflections, were receptive to criticism and demonstrated a willingness to learn. The positive connection and unity between most of the core team and the co-researchers enabled successful navigation through these challenging experiences that was validating and provided opportunities for individual and team development.

Empowering: … good engagement should be collaborative and must empower victim-survivors to have control of decisions about their own involvement. This includes the decision about their capacity to participate in events, research or projects (within boundaries of being able to keep themselves safe and support the maintenance of safety for other participants). Research, events or training may be victim-survivor-led or co-produced … Victim-survivors should have a significant influence from the outset on the process of a victim-survivor-engagement project e.g. setting agendas, scoping courses of action, terms of reference, devising research questions, event schedules, evaluations.

Co-researchers report that their PROSPER experience was an empowering one within which the retention of agency and control over their level of involvement was supported and encouraged. Co-researchers valued maintaining the power to decline, reflecting upon the significance of maintaining control and choice for those who have experienced SV.

Being part of this project has been incredibly empowering. The core team were skilled at asking, listening, hearing, and taking my views on board. I felt both individually and collectively, the Prosper Team were value-driven – and empowerment being a core value.

Opportunities for learning, access to training and hearing the experiences of others with lived experience were all reported to be empowering. Feeling valued, heard and made to feel ‘more than’ were also a source of empowerment by altering those scripts from the past which included being silenced and being dismissed.

There was some disappointment for the co-researchers that they were not engaged earlier in the project. That said, once appointed, engagement was inclusive and meaningful and co-researchers valued playing an active part in refining study documentation, being present in participant interviews and having a proactive role in dissemination events. However, earlier appointment would have enabled a much greater opportunity to shape the project from the start. By the time the co-researchers were on board, the project, its design, methods and outcomes were pre-determined.

Amplifying the voices of survivors: Engagement should help release and amplify victim-survivors’ voices, experiences and expertise. Good engagement will make it ok for victim-survivor issues and viewpoints to be on the agenda. It creates intentional space for dialogue with victim-survivors, gives and shares organisational platforms with victim-survivors and evaluates projects, events and research findings with victim-survivors’ voices as a key input, allowing them to be the ‘experts by experience’.

There is little value in the voice of lived experience being heard if it not also heeded. To heed is to amplify and to amplify validates and values those voices. PROSPER co-researchers felt the role did amplify their voice, that there was a genuine desire from most of the team to embrace the expertise of lived experience as a means of both enriching the research and eliciting authentic data. A continuous dialogue was opened within which co-researcher voices were met with appreciation and compassion. It was a shared hope within the team that heeding the voices of the co-researchers held multiple benefits – for the research, for future research, for researchers and co-researchers, for study participants, service commissioners and providers and victim-survivors watching from afar.

We are also survivors informing, shaping, honing and analysing information provided by, and about survivors. We know best how that might feel and how to approach the research. We have helped to amplify the voices of those that have sought sexual violence services and we have had our voices heard too.

Promoting self-care: Many who have been abused experience times of fragile mental and physical health and may find it hard to practice self-care. Engagement in research-activism can impact coping mechanisms – thus radical self-care should be normalised by example as well as in organisational processes. This includes recognising that many victim-survivors are both ‘ok’ and ‘not ok’ at the same time (often masking distress). Organisations should support and not pathologise workers and participants who are survivors, enabling them to be real about struggles and ‘not-ok’ days and ensuring sufficient ‘back-up’.

Co-researchers reflected that during interviews for the role, the decision to take part was articulated in terms of self-care. The framework for engagement outlined and promoted self-care as a priority: ‘self-care was encouraged (and even felt celebrated)’.

Co-researchers experienced a genuine interest in their well-being from other team members. Self-care, by definition, remained the preserve of the individual, but the collective encouragement of prioritising self-care was welcomed by all co-researchers. The sense of shared and ‘collective care’ was palpable. Some co-researchers experienced this ‘collective care’ as a welcomed contrast to ‘coping with the impacts of trauma alone and behind closed doors’. In a society that lauds overworking, deadlines and meeting the expectations of others, an environment that fostered, celebrated and made room for self-care felt empowering and liberating. Self-care was seen as an investment both in the individuals involved in PROSPER and in the project itself, holding the power to revive and restore while simultaneously enabling sustained, active, productive and healthy participation.

Accountable and transparent: … Engagement with victim-survivors must have clear lines of communication and accountability, including to victim-survivor-participants and victim-survivor communities. Processes and decision-making should be relational, honest, real, transparent and open to feedback and dialogue.

Decision-making within the co-researcher role felt authentic, honest, relational and transparent – positive and negative feedback was welcome and open dialogue maintained. However, engagement of co-researchers when project design, delivery and outcomes had already been decided created a certain opaqueness to what had gone before. There were also periods throughout the project when communication and updates lessened leaving some co-researchers feeling disconnected and a little lost in terms of what they were meant to be doing. Conversely, times of intense activity and updates felt overwhelming for some when set against their other commitments.

One co-researcher expressed that sometimes a tension appeared to exist between the full inclusion of co-researchers and a fear from the core team that they might be ‘asking for too much’. This demonstrates a difficult balance between full inclusivity of co-researchers, while acknowledging that they are not fully employed and cannot devote as much time to the project. This appears to be a perennial issue. Openness of dialogue within the team enabled freedom to raise these potentially problematic matters and offer opportunities for redress. This begs the question, however, whether these matters are inevitable within co-research and can only be resolved, day to day in a dynamic way by highlighting the tensions each time they surface or whether in fact that can be avoided and minimised by implementing fundamental changes to research infrastructures and funding.

Liberating: Engagement must be a totally voluntary process and easy to withdraw from at any point (without fear of permanent exclusion). Good engagement is liberating, dynamic, life-giving and helps victim-survivors experience a sense of possibility and life beyond the aftermath of abuse.

Aside from individual feelings of not wishing to ‘let anyone down’, PROSPER co-researchers felt it was easy to withdraw at any point or to ‘temporarily take a step back’. This was reiterated and explored often by the core team in the early stages of the project. Maintenance of this level of agency and choice, without fear of judgement or consequence, was welcomed and liberating for some of the co-researchers. The research team frequently demonstrated an understanding of co-researcher lives, and commitments, both within and beyond PROSPER.

Co-researchers were engaged in PROSPER by virtue of their lived experience. That, after all, was ‘the whole point’. However, what was oft spoken of as the most liberating aspect of being a PROSPER co-researcher, was that a reductionist perspective was liberatingly replaced with a holistic one. Co-researchers, contrary to the appointment brief, were not defined by their experience, but rather were consistently seen in what we refer to as ‘3D’.

It was an exercise in freedom to be part of the research … I felt liberation was lacking when I initially constrained my interaction within the team to ‘just my experience’ but after voicing that concern, we all acknowledged that we are so much more. It felt liberating to hear that from others.

On the point of liberation though, it is important to pause to consider what this means in the context of inclusion and diversity. A reflective point is that four out of the five co-researchers are white (they are also all women, although we made deliberate attempts to recruit men to the role). From the words of the one, black co-researcher (who also identifies as being neurodiverse), there are clear lessons about the need to address matters of intersectionality in a co-research project such as PROSPER:

I’m neurodivergent. I’m not sure if it’s because the more I’m learning about me, and the way I receive, read, process, retain, and present information, that how different that is to everyone else. But it became quite apparent to me on this project, and I let it hinder me, massively. I actively didn’t participate in a lot of the academic writing because of inferior complex … I recognise that the amount of support I wanted and potentially needed would have been a lot, so I didn’t participate, which I’m really now frustrated about that I let an opportunity to get involved that way, pass me by because of it. I wish I would have been more confident in saying how I would of wanted to be developed!

When you are not a part of that ‘typical white, heteronormative space’, you become conscious about how and what you are going to do, to have a seat at the table. I’m black. You can see I’m black … I’ve found myself on this project, having to carefully navigate my experiences as a black woman, between making sure I’ve hopefully given a space for black women to talk about their experiences of SV, but also knowing, (and not wanting to be) the spokesperson of every black woman.

Co-research, co-production, co-creation it’s vital. Within this, the need for an intersectional approach is absolutely vital! There needs to be the time, the care, the resources and the finances to be able to execute this in a way that is positive, meaningful, enriching and impacting. Reflecting back, there should have probably been a lot more thought and opportunities to provide a space on how we embody intersectionality approaches, what that looks like, and what that means. Having honest and open conversations about the limitations about this also.

Creative and joyful: Engagement should be a creative process. Good engagement focuses on positive experiences and strengths as well as negative ones and can increase capacity for joy, creativity and imagination. Where appropriate, projects should include elements of fun and celebration of achievements and landmarks in the lives of individuals and in victim-survivor groups and wider social justice movements for survivors.

Creativity was honoured throughout the experience, and co-researchers were actively encouraged to bring alternative approaches to supplement and challenge ‘more traditional’ elements of the study. This was seen within regular meetings and the team away days where creative expressions of experience were welcomed. Co-researchers identified creativity to be of great importance to them – being representative of ‘wholeness’ and contributing towards holistic healing. It was expressed many times that joy was being found in the connection and unity between the core academic team and co-researchers, in the opportunities for new learning and new skills and joy in feeling part of a project whose intention was to make a difference to the lives of victim-survivors.

An early invitation from the core team to imaginatively evaluate the co-research experience (as referenced earlier) quickly gathered momentum and favour. The additional creative evaluation work was fully embraced by the co-researchers who identified its potential value to others often articulating a desire for the work’s outputs to become far-reaching, creative and offer novel insights into routes to healing. Outputs and accompanying narratives that funders, service providers and service users alike will hopefully be brave enough to draw inspiration from.

Yes, yes, yes! Being part of PROSPER has brought me great joy and opened up additional creative opportunities. I feel truly grateful for being part of an important piece of research.

Whose benefit?

Much of what has been written in this chapter reflects on the experiences of and benefits to the co-researchers, but ‘good co-research’ must not just be good for the co-researchers. Despite the plethora of commentaries around co-production, it is difficult at times within a project to uncover the immediate and future benefits. The subtleties of benefit may be difficult to identify – and perhaps only gradually revealed over time as the ripples of co-production spread outward, albeit obvious cause and effect may remain elusive.

Oliver et al.84 comment on the importance of far-reaching translational research evidence: beyond the standard academic journal article into some format which can be easily absorbed by policy-makers, practitioners or other ‘users’, if it is to have influence outside the academy.

They also offer four key justifications for undertaking co-production:84

Substantive: to improve the research quality and enable a fuller, more holistic understanding of the issue being researched and in doing so making the research more relevant with the potential to discover ‘unknown unknowns’.

Instrumental: which sees co-production as a means to ensure that the results of research are used in effective ways – collaboration helps to identify these innovative methods of output and translation. Integral to this is the upskilling of non-academics, creation of a trust and greater evidence sharing.

Normative: draws upon the intrinsic value of co-production, whereby democratic engagement is transformative in both research and social terms.

Political: wherein co-production offers a greater sense of ownership, empowerment and inclusion to users/those with lived experience which translates into a greater likelihood of research findings being acted upon and received as more credible.

Co-research ‘well done’ may not only assist co-researchers in their ambitions to be agents of change but may also translate into a far more nuanced lived-experience voice within commissioning spheres and service provision than there is at present. Reflections by some members of the PROSPER core research team offer their perspectives on the benefits of co-research:

I am proud to have been part of a project that was able to learn so much from five co-researchers each with their own expertise and strengths. On more than one occasion in a victim-survivor interview with a co-researcher, the interview participant specifically referenced the experience of the co-researcher and seemed to feel supported in knowing that there were others who could understand and validate their experiences to a greater extent.

The co-researcher contribution to PROSPER has been vast. It has resulted in a more sensitive and attuned approach to the subject matter and interviewing of victim-survivors specifically. I asked all victim-survivor participants if they would be happy to be interviewed by a co-researcher. All said yes, indicating that having someone with lived experience involved in the process was wanted and considered important. PROSPER as a whole was more informed, critical and insightful care of co-production.

As a long-standing researcher of gender-based violence, I have also had some of the most powerful conversations of my career with the co-researchers, focused on topics of trauma, recovery and its messy, non-linear trajectory. We have also had fun as a group, despite the gravity of what we were researching, and that has been essential for everyone’s well-being and morale.

The PROSPER co-researchers have enriched the project through their insights, critical questions and sharing of their personal and professional experiences ... the group both individually and collectively have had a significant impact on the course of the study and the ways its findings have been (and will be) communicated. Victim- survivor participants welcomed the presence of co-researchers in all the interviews that I carried out. Moreover, I think that the presence of co-researchers is likely to have increased participants’ tacit confidence that they would be treated with sensitivity and respect and, more broadly, feel that they were taking part survivor-centred research.

Core research team members commented upon the potential for research teams and research leadership, which is created by co-research. This is the potential for a deepening of understanding of, and respect for, the realities – and messiness – of lived experience – an understanding that will hopefully infuse their future research endeavours and their interactions with victim-survivors.

Use of Survivors Voices Charter and Engagement Ladder

A growing number of co-production evaluation tools and frameworks are available. What became clear for the co-researchers when reflecting upon the PROSPER co-research experience was the importance of employing a framework that held meaning and resonance for them. The Survivors Voices Charter78 was regarded as a bespoke framework which completed the circle of lived-experience involvement, a resource created by victim-survivors which offered great authenticity to the evaluation process.

The co-researchers acknowledge inherent limitations in using the Survivor Research Involvement Ladder80 as an evaluation tool. Its meritocratic ranking of different forms of engagement such that victim-survivor-led and victim-survivor co-produced projects are portrayed as the ‘gold-standards’ for engagement, offers little credence to the benefits of ‘less inclusive’ yet potentially insightful methods of utilising lived experience. However, the simplicity of the ladder as a method of assessing where the PROSPER co-research sits within the matrix – as ranked by co-researchers and core researchers – provides insight into the PROSPER co-research endeavours, which, when considered alongside the Charter, may offer clarity on where and how to improve future co-production endeavours.

Summary and key recommendations

The PROSPER co-researchers collectively express that their engagement in the project has largely reflected the Survivors Voices Charter78 principles, and that the University of Birmingham academic team has honoured the Charter’s ‘Good Practice’ guidance. The co-researchers conclude their level of engagement, according to the indicators within the Engagement Ladder, falls somewhere between ‘victim-survivors co-produce the research’ and ‘victim-survivors act as advisors to the research project’. PROSPER co-researchers feel that much has indeed been ‘done right’. However, improvement is always possible and honest reflections provide points of learning to be taken forward into future projects:

• Avoid the presumption that co-researchers may be less interested in the early parts of research – such as funding applications and ethical approvals.

Co-production of a research project should begin from the collective production of research aims and questions. This allows non-academic co-producers to address issues they consider to be of direct importance for their lives; and to frame them in ways appropriate to their knowledge and lived experiences.85

• Do not underestimate the power of in-person connection for those who have experienced interpersonal violence. Interpersonal violence is inherently isolating. Avoid succumbing to a reliance on remote working as a means of convenient, economical engagement of co-producers. This potentially creates isolation and disconnect and hampers the development of safe and trusting relationships.
• The Survivors Voices Charter offers guidance to organisations to ‘seek workers who understand nuances about abuse and safety, e.g. victim-survivor-researchers/speakers or people who have accompanied victim-survivors as “enlightened witnesses” and are victim-survivor-sensitive’. It is inevitable that some researchers, despite their protestations to the contrary, will fall short of this. It is incumbent upon all team members to act quickly when concerns are mooted regarding an individual’s level of awareness, trauma-sensitive practice and their commitment to the project. Clear lines of responsibility in managing individuals who fail to meet their responsibilities to the co-researchers and to the project are required, including written and agreed processes and procedures for escalation of concerns. There must be provision of safe opportunities for such concerns to be raised and the identification and articulation of training needs for the individual/s concerned.
• Have robust protocols, clear lines of communication and defined areas of responsibility in place to manage and minimise destabilising incidents. Wherever possible and safe, ensure that reparative discussions are open and collective and ideally avoid the provision only of ‘behind the scenes one to one support’. While potentially of benefit to the individuals concerned, the exclusion of team members from discussions may be fragmenting of collective responsibilities and replicate harmful ‘secret keeping’ dynamics. Keep in mind the:

intertwined nature of the transformative power and pain of breaking the silence of abuse … acknowledge that individual and organisational fears about the risks of ‘opening Pandora’s Box’ can silence victim-survivors and prevent meaningful dialogue, engagement and partnership with victim-survivors. Enabling dialogue about abuse may cause distress, however, distress does not automatically lead to damage. Instead of avoiding the subject of abuse, we will learn to ask well, work collaboratively, and give choice in a safe and supportive atmosphere.78

• Explore and mitigate the fine balance that exists between honouring other commitments held by co-researchers and the avoidance of well-intentioned but potentially paternalistic and patronising expressions of ‘we don’t want to overload you’. It is indeed a difficult balance to reach, yet the recognition of commitment offered and the expectation of co-researchers to meet this commitment is respectful and empowering and goes some way to avoiding the presumption of vulnerability.
• When constrained by tight co-research budgets, acknowledge that employing more co-researchers than originally budgeted for may be counterproductive and lead to monies having to be spread rather thin. Allocation of research funding to PPIE and piecemeal co-production payments may ultimately be a limitation to ambitions for comprehensive co-production. A shift is recommended – wherein ‘Expertise by experience must be incorporated into professional practice, not silenced by it’.74 Challenge the status quo of research funding and a research landscape that promotes hearing and lived-experience voices ‘by invitation only’. Acknowledge that those with lived experience are found within all professional spheres. This requires the creation of safer environments which openly embrace these individuals and their experience without fear of censure, discrimination or othering. Actively work against the prevailing force that perpetuates silence.
• Remain open to novel and unexpected benefits and respond to these in creative ways so that insights are harnessed for future use – in particular, recognise how the discovered benefits to co-researchers within a project can be translated to those with lived experience outside the project. A potential mirroring of benefit is available to those watching carefully, whereby experiences within can be applied without.

It is as important to value the impacts of working co-productively that come from the research process as it is of the research findings or outputs. For the research process, some of these impacts will emerge rather than be planned: new relationships, expanded social networks and increased confidence of members of the public may be some examples. In terms of the research findings or outputs, working co-productively will produce knowledge and an end result that will often be different from that produced by a conventional academic process.77

• Many research projects regarding victim-survivors of sexual and interpersonal violence have the ultimate goal of improving routes to recovery and enabling victim-survivors to live lives full of potential and joy. It is important within this endeavour to embrace the transformative and healing power of creativity – to recognise it as a credible area for financial investment and challenge attitudes that dismiss creative research approaches and outputs as ‘flights of fancy’ requiring greater justifications that ‘tax-payers money is being well spent’:
• ‘It is the presence of the creative process that transforms life. If we imagine healing as an energy of creative transformation, then our goal becomes the cultivation of the salubrious force that finds its way to people in different ways’86 (p. 18). For those requiring greater scientific evidence of the power of creativity, the body of knowledge around this is rapidly growing within the neuroscience and trauma spheres and can be found if one is willing to look. Bolwerk et al.87 report that using real-time magnetic resonance imaging of brain concluded ‘Our findings are the first to demonstrate the neural effects of visual art production on psychological resilience in adulthood’.
• When planning and delivering a co-researched project involving those who have lived experience of sexual and/or other interpersonal violence, consider the Survivors Voices Charter78 – its seven principles and guidance for safe, empowering, liberating and joyous engagement.
• As regards intersectionality, there needs to be the time, the care, the resources and the finances to be able to execute this in a way that is positive, meaningful, enriching and impacting. Critical reflection is crucial on how to embody intersectional approaches into co-research and the limitations associated with such attempts.

It has been a revelation and a privilege for the PROSPER co-researchers to have been part of a project, and a team, committed so wholeheartedly to delivering a co-research experience that honoured the insightful principles articulated within the Survivors Voices Charter. However, the co-researchers are realistic and cognisant of human fallibility as an inevitability, the avoidance of risk as impossible and the unlikely creation of a ‘perfect’ co-production experience. What is most important is hope and intent.85