Chapter 10: Co-production from the Perspectives of People Who Have Experienced Homelessness

Homelessness typically attracts a lot of attention from the media and policymakers, for example, being equated to a ‘health catastrophe’ in the most recent review of the National Health Service (NHS) (Darzi, 2024), highlighting the pressing need for change. We define homelessness as sleeping rough, living in shelters, hostels, and temporary or unsuitable accommodation, with the implicit recognition that before becoming homeless, people have often faced sustained periods of severe difficulties, which are both a cause and a result of poor health and well-being. The longer or more often people are homeless, the worse their health becomes and the harder, and more costly, it is to get their life back on track. Despite a range of good initiatives in the UK,¹PEH have an expected lifespan of just 45 years for males and 43 years for females (Office for National Statistics [ONS], 2019), and homelessness continues to rise, increasing by 26% in 2023 alone.

This chapter presents a reflection on a recent UK Research and Innovation (UKRI)-funded project, which aimed to build a practice network to tackle homelessness in the North East and North Cumbria. We partnered with a group of eight people with lived experience of homelessness (EbE), who between them had experienced many of the complex needs typically faced by PEH, including experiences of addictions, trauma, mental and physical health issues, challenges with learning, and past criminal convictions.

Meaningful public involvement in research can present a range of positive benefits for EbE, the researchers, and research outcomes. Studies have found that involvement can generate feelings of empowerment (McLaughlin, 2009), improved self-esteem, self-efficacy, and self-control (Pawson et al., 2022). Involvement can increase knowledge and support the development of other life skills (Brett et al., 2014). However, few researchers have produced critical reflections of public involvement, including negative aspects (Russell et al., 2020). Few yet have forefronted the voices of particularly marginalised groups in their reflections on the research process. This is precisely what we aim to do in this chapter. After giving the reader an overview of the research that led to the data we are presenting here, we let the voices of the EbE we worked with do the talking, purposefully taking the back seat of the critical reflection endeavour.

The data presented here was collected at the end of a research project funded by the Arts and Humanities research council (AHRC)–UKRI, which aimed to develop a consortia to address homelessness across the North East and North Cumbria. It consisted of four activities, in which PICE was key:

1. Workshops with practitioners and decision makers from across the North East and North Cumbria to promote knowledge exchange. EbE decided on the focus of each workshop and contributed to its organisation.

2. Developing a network of organisations supporting people experiencing homelessness, and identifying a host website (Signpost) for further development in a subsequent project.

3. As part of the funding, £10,000, referred to as the innovation pilot fund, was ringfenced to enable EbE to improve the integrated care offer for the residents in their housing association. They developed five projects, which provided sustainable and varied opportunities for self-care, learning, and exercise.

4. EbE also had the opportunity to take part in an accredited module focussed on peer and participatory research to support their involvement in research.

On completing the project, we interviewed the six EbE who shaped this project, as well as the key support lead in their housing association (n = 7 interviews), to reflect on the process of working together. Interviews were conducted face-to-face and lasted 32 minutes on average; they were transcribed and thematically analysed. These interviews created a reflective space where we openly discussed our feelings about the project. While it must be acknowledged that social desirability bias may have guided some of the answers, all six EbE have subsequently chosen to continue working with us on a different project, which is testimony to their positive experiences.

In the following paragraphs, we present key themes arising from those conversations, giving most prominence to EbE voices, rather than superimposing our own. They spoke about getting involved in research, identity and belonging, how important it was to be in control of their stories, to have an opportunity to inform practice and have an impact, and the pragmatic aspects of taking part in research.

It was important that we recognised that PEH lead complex lives and often have multiple and intersecting needs, meaning that taking part in research may not be a priority. Reaching the right balance between being inclusive and respectful of more urgent needs was important. There was a sense that this had been achieved:

While all EbE were housed, they had all experienced chronic or repeated homelessness, all had had experiences of trauma, and some had ongoing issues with their mental health or addictions. As a team, we had an explicit, very flexible approach to participation and attendance. This was particularly helpful for Interviewee 6, who knew that he was welcome any time, but that no questions would be asked when he could not attend a meeting.

The opportunity to take part in research meant having a purpose, contributing to changing practice to support people, and giving a voice to others.

The opportunity to help others was a key driver in decisions to take part in the research for others too.

The project inspired Interviewee 3 to want to learn and do more about homelessness.

Data highlighted that the participants came from a perspective of having been disenfranchised, undermined, devalued, or distrusted throughout their lives. As researchers, we aimed to be as inclusive, valuing, and respectful as possible; this did not go unnoticed by EbE:

Interviewee 3 further explained that in one of the workshops (activity 1), he decided to stand up and explain what being part of the project had meant for him. One of the attendees later approached him, saying they had been really touched, and he felt proud to have been able to make someone understand his perspective. While this may seem insignificant to many readers, this made him feel heard and valued.

Similarly, having the opportunity to be a student (activity 4) was a particular source of pride:

Reflecting on the same idea that, having been homeless, they had faced discrimination and stigma, Interviewees 4 and 5 noted how they felt respected during the research process.

In order to operationalise the innovation pilot (activity 3), EbE pitched their ideas to each other and took collective decisions as to what to fund. This was a level of autonomy that they had not been used to, and they reflected on this:

Interviewee 6 concurred:

The EbE's reflections on the respect and trust they were met with were partly a function of the journey they had come from. In that respect, the research journey was itself valuable in ways we had not anticipated.

From the outset, cognisant that the EbE were likely to have been through traumatising experiences, and that services often require them to repeat these, we made a point of being very clear that full participation in the project was not dependent on any personal disclosure, and this was important, as Interviewee 2 explains.

For others, it was important to be able to recount their experiences in order to help practitioners help others.

Interviewee 6 agreed with this, though also highlighted how for them it was important to share their emotions and be open about them:

This shows differing preferences EbE had in disclosing their story while being involved in the project, and how important to them it was that they felt in control of what they shared, and how they shared it.

The EbE reflected on the impacts of the research, both at an individual and collective level. For example, EbE highlighted how the project had enabled them to have a more positive outlook, and be and feel healthier:

The support lead noted how involvement in the project had enabled EbE to become more confident:

This was true of others:

The project offered EbE opportunities to engage in positive activities that were not directly linked to their traumatic pasts. It has enabled them to begin to grow from beneath the umbrella of homelessness and its correlates.

Interviewee 5 felt the project had been transformational:

The project increased some of the EbE's confidence in a way they had not anticipated.

Interviewee 2 commented on the usefulness of the workshops (activity 1), which brought together researchers, practitioners, decision makers from across the region, and EbE. This gave them a platform to be listened to in a way they had not experienced before.

In activity 2, we explored the possibility of setting up a live interactive online directory, using an existing website called Signpost as an example. The EbE saw this as a positive ambition:

This reflection shaped a subsequent bid, which incorporated the development of the website, demonstrating a very tangible impact of EbE's input and reflections.

The innovation pilot projects (activity 3) had unplanned ripple effects, in that they inspired other residents to take charge and organise groups, such as a men's health and a women's group, supported by their housing association. The project thus demonstrated to residents that they could self-organise, and the housing association would support any development that would support its residents’ health and well-being. With many people having chronic low self-esteem and being distrustful of organisations, this level of agency and proactivity was particularly welcomed by the housing association.

Other innovation pilot projects (activity 3) have outlived the funded research. For example, some of the funding enabled the housing association to finish equipping a kitchen and to teach people how to cook for themselves. Interviewee 4 took charge of this project, enrolled external course deliverers, and started to teach lessons himself.

This level of growth in autonomy and confidence was not something the research aimed for, but an important finding, demonstrating that the research process itself can be transformational, at both an individual and collective level.

It was important for us as researchers to think about the practicalities of organising meetings and workshops, ensuring that everyone was comfortable throughout.

A key practical aspect of working together was payment. We followed the National Institute for Health and Care Research (NIHR) involve guidance of paying £25/hour, but came to an agreement with our partner housing association that the money would be negotiated individually, and spent towards people's employability to avoid giving cash, which might have impacted their receipt of benefits. All EbE reflected positively on this.

Beyond this, the EbE reflected on the fact that we dedicated some time to scaffold them as they were engaging in a new environment:

Interviewee 3 highlighted a crucial need to reach a balance between support that could be felt as patronising or condescending, and courteous and supportive at all times. For example, we always made a point of meeting them where they were getting dropped off by taxi, and walking with them to the meeting room. This meant they had a friendly face to welcome them on campus and never had to worry about finding their way around.

Over the course of the project, the EbE learned to work together, as a team, in a way they had not had the opportunity to do before.

This process alone was a learning experience that had not been anticipated.

While these practicalities may seem trivial, they were key to making the relationships work and developing the trust we needed to make the project a success.

From these reflections, we have identified several key lessons to inform PICE with particularly marginalised groups, such as people who have experienced homelessness. Researchers need to be cognisant of EbE's histories and how their own actions might be perceived. We did not anticipate our common-sense inclusive and respectful approach to have quite the impact it had on them, and yet it did. This is likely to apply to other marginalised groups. Linked to this, researchers need to ensure that EbE always feel in control of the terms of their participation. This includes the telling of their stories, but also the frequency and shape of their participation. It is also important to reach the right balance between engaging people who are settled enough for participation (however that judgement is made), but close enough to the issues to inform the conduct of the project. The EbE involved in this project were not always in a place that enabled them to be reliable, but we made it clear that participation was flexible at all times. The remaining part of the research team was neither contingent on them telling their stories, turning up to meetings reliably, nor always participating. No one was ever put on the spot or made to feel awkward if they had missed some activities. All were invited to all activities consistently. Other practicalities were important too. For example, while national guidance on payment is welcomed, individuals live in an environment that has to be factored in, as much as possible, in order to ensure that research does not do more harm than good, or is not solely transactional. Payments need to be carefully considered on an individual basis, applying flexibility and working with an organisation they trust wherever possible.

Conducted in this way, research can in itself be part of a process of healing and learning, which has benefits for individuals. For example, the opportunity to practically help others, when one has been seen as ‘in need’ for a long time, was particularly valued and valuing. Research drawn from occupational therapy has shown the positive effect of this, for groups with limited opportunities to engage in ‘meaningful occupations’ (Smith, 2018). Public involvement with marginalised groups, such as those who have experienced homelessness, cannot be conducted meaningfully as a purely transactional endeavour. It has to have authenticity, trust, respect, and meaning embedded at its very core. Our experience suggests that it works best when understood as not a means to an end (the research), but an end in itself (engaging with people because they matter), which can, as we have demonstrated here, have impacts beyond the original remit of the research.

Our project demonstrated that achieving meaningful engagement with PEH requires a thoughtful approach, but it is entirely possible.

This project was funded by the Arts and Humanities Research Council (UKRI); grant ref: AH/X005836/1. With special thanks to Carl, Lee, Barnie, Stephen, Porl, Karl, Terry and Bryan, and in memory of Ben.