Chapter 9: Embedding Trauma-informed Principles Within Involvement and Co-production Activities with People Experiencing Homelessness

Increasingly, meaningful involvement of the people directly impacted by health and social care in research has become an expectation (Russell et al., 2020). Historically, for populations facing marginalisation, this has been accomplished through participatory approaches, particularly for people experiencing homelessness (Anonson et al., 2022; Feen-Calligan et al., 2009; Rogers, 2021). More recently, this has been accomplished through co-production or involvement across the research process or in specific components (Adams et al., 2024a, 2024b, 2022; Crooks et al., 2024). When collaboratively undertaking research with people experiencing homelessness, issues of marginalisation are even more pressing. Additionally, an awareness and understanding of trauma, which is very common in people with experience of homelessness, is equally as important. In this chapter, we will draw from several empirical research studies with varying levels of involvement in research of people with lived experience, to reflect on the implications of trauma and then ways to embed trauma-informed principles in the approaches used when working with people who have experience of trauma and homelessness.

Trauma is the psychological response to an event or an experience that is out of the ordinary and has lasting impacts on all aspects of well-being, particularly mental health (Substance Abuse and Mental Health Services Administration, 2014). The Substance Abuse and Mental Health Services Administration (2014) explains that trauma is comprised of three main components: the event, experience, and the effect. Traumatic events can be singular or repetitive (Sweeney et al., 2016). When someone is unable to recover from one experience of trauma before another takes place, they experience cascading trauma (Center for Substance Abuse Treatment, 2014). The way someone experiences an event or events determines whether something is traumatic (Substance Abuse and Mental Health Services Administration, 2014). Trauma is personal, and one person could experience an event as a trauma, whereas another person experiencing the same event does not. In addition to recognition at an individual level, understanding trauma and its impacts requires a societal and political context that supports this (Herman, 2015). Historically, the lack of supportive societal and political contexts has led to challenges in investigating psychological trauma. However, the current supportive contexts have led to an increase in current research and evidence related to trauma and thus changes in practice (Herman, 2015).

One of the major shifts in our understanding of trauma and its impact is tied to the trauma-informed practice movement pioneered by Harris and Fallot (2001a). This shift led to a greater recognition that many people accessing health and care services are survivors of trauma, and therefore, services need to be mindful of the role they have in preventing re-traumatisation and encouraging access to support. We would argue that the same applies to people involved in research. Harris and Fallot (2001a) acknowledged the importance of appropriate referrals to trauma-specific support, while highlighting that health and care services and the wider system must have awareness and understanding of the trauma and its consequences. They proposed a shift for all services working with survivors of trauma to become trauma-informed. Building on the original principles highlighted by Harris and Fallot (2001a), Substance Abuse and Mental Health Services Administration (2014) in the United States of America (USA) further refined this understanding through developing a model for conceptualising trauma, four key assumptions for applying trauma-informed approaches, and six key principles for trauma-informed approaches. The four Rs highlight the basic assumptions that need to be met when implementing trauma-informed approaches (Substance Abuse and Mental Health Services Administration, 2014). These assumptions suggest that services need to have a basic realisation of trauma and its effects, recognition of the signs of trauma, respond in a way that applies to the six principles of trauma-informed approaches, and finally resist re-traumatisation. Based on prior research (Elliott et al., 2005; Harris & Fallot, 2001b), six principles fundamental to trauma-informed approaches were created: (1) safety, (2) trustworthiness and transparency, (3) peer support, (4) collaboration and mutuality, (5) empowerment, voice and choice, and (6) cultural, historical, and gender issues (Substance Abuse and Mental Health Services Administration, 2014). These principles are applicable to a range of types of services and were not designed to be prescriptive, but rather generalisable. Although designed for service provision, the concepts, assumptions, and principles are applicable to research, particularly in research involving people who have faced trauma and/or homelessness, where the researcher has the responsibility to reduce the risk of re-traumatisation from taking part in the research.

Recently there has been an increasing body of health research that has moved beyond doing research about people to research with those who are impacted. The range of terminology used to capture research undertaken with those impacted reflects the ambiguity of consensus on what is meant by involvement (Tritter & McCallum, 2006). Much of the current understanding stems from Arnstein's ladder of participation (Arnstein, 1969), which although has merit in the context of research involvement, it was not designed with this nuanced use in mind, but rather citizen participation. Our research focusses on public health and inequality issues related to homelessness and other forms of disadvantage and is often qualitative in nature and incorporates the voice of lived experience into different elements of the research process from co-creating information sheets and study materials to analysing transcripts and presenting findings. In the context of our research, active participation or involvement involves a partnership between researchers and those who are impacted by the condition or experience being investigated across the research process, including in the design, conduct and implementation (Rahman et al., 2022). Although this approach is concerned with justice and fairness and aims to create equity, there are still concerns that barriers (including trauma) could prevent involvement and this approach could perpetuate marginalisation when the approach is applied inappropriately (Foster et al., 2021; Williams et al., 2020). Recently, there has been the development of the UK standards for public involvement, which highlights six standards for involvement: inclusive opportunities, working together, supporting and learning, communications, impact and governance (Hickey et al., 2018). These standards provide a starting point for understanding what is good or meaningful involvement. While acknowledging the need for adaptation these standards are commonly used within UK health research.

There is substantial overlap in the principles behind co-production and trauma-informed practice (McGeown et al., 2023). This is particularly the case when considering addressing power dynamics through collaboration and empowerment. However, there is no trauma-informed framework to guide co-production approaches between researchers and people with lived experience. This is particularly concerning given the need for approaches to acknowledge and understand trauma and its potential impact on the people that researchers are working with (Fulfilling Lives South East Partnership, 2021). When undertaking research in sensitive subject and topic areas, the onus is often on the researcher to understand how trauma and marginalisation are connected in the context of their research.

Trauma and traumatic events are often discussed or expressed by study participants. This means that when we involve people in research who have experienced trauma, they are very likely to be exposed to further discussions related to and about trauma. This can impact someone by being reminiscent of a past trauma, a concept known as retraumatisation (Sweeney et al., 2018). Alternatively, where events are discussed that are not reminders of one's own experience, there is still a risk that hearing or reading these experiences can lead to emotional or psychological responses. This puts someone at risk of secondary traumatic stress, the emotional and psychological responses from hearing about trauma, originally thought of as compassion fatigue and focussed on those treating or supporting people who experience trauma (Figley, 1995). Having this awareness of the types of trauma(s) that arise while undertaking work collaboratively is imperative to reducing negative psychological consequences for those involved in research.

The value of trauma-informed principles in co-production has been explored in the context of service design (McGeown et al., 2023). Despite an overall recognition that co-production principles are highly suitable when developing trauma-informed services, there is a need for greater consideration to be given as to the implementation of specific principles around sharing lived experience, creating safe spaces, and balancing empowerment with safety among other areas (McGeown et al., 2023). With co-production being increasingly applied within research, the potential application of trauma-informed principles in co-produced research warrants further consideration. Throughout the remainder of this chapter, we will explore the potential application of the six key principles of trauma-informed care into co-production and involvement activities in research. This is based on empirical research studies we have conducted on homelessness applying co-production (Adams, 2023; Adams et al., 2022, 2024a, 2024b; Harland et al., 2021; Perry et al., 2021). Although our experience has been mainly around qualitative studies and people who have experienced homelessness and trauma, the reflections and learning are applicable to other study designs and can be considered in the context of other populations who have experienced trauma.

Safety focusses on ensuring you are safe as a researcher and that the people you involve are protected and feel physically and psychologically safe to engage (Substance Abuse and Mental Health Services Administration, 2014). In research, this can be supported through an open conversation about what safety means to the people we are working with and how they would like us all to work together.

Ensuring physically safe spaces requires open and collaborative discussions to firstly determine where meetings take place and what they will look like (Adams, 2023; Adams et al., 2022, 2024a, 2024b; Harland et al., 2021; Perry et al., 2021). Irrespective of the location, it is important to think about the physical space from the outset of your research. Physical space is not only a factor for meetings when working together directly, but also when people are working independently on tasks outside of meetings. In the context of our work, we will ask people to complete tasks in the place where they are currently living. Although we have less control over what those settings and spaces look like, in our experience, it was equally important to have open conversations around what support people need to be able to do this, in relation to the support we could provide.

Psychological safety during research is important, and this can also be supported through implementing trauma-informed check-ins and check-outs for those involved in or co-producing research (Hackney et al., 2023). These will be structured times to build relationships, and end on a positive statement of accomplishment. To facilitate completing this independently, there is the potential to use journals to facilitate this (Adams, 2023). Researchers need to be mindful of their own practice, and part of the reason why check-ins and check-outs are important is to identify if someone is already dealing with a lot and may need additional support during the research process (McGeown et al., 2023). With independent working, active effort needs to be made to collaboratively understand how to tell if someone is not in a position psychologically to continue with their work. There also needs to be an agreed-upon process that is clear and transparent for communicating safety concerns. As part of this, discussions around what the role of the lead researcher is and where situations arise outside of what that researcher can support, what the appropriate escalation channels are. Interlinked with this will be creating a clear post-support process. For independent working, we have previously used messaging channels and apps, based on the recommendations and preferences of the people involved, for an ongoing channel whereby someone can reach out if they ever feel their safety is at risk (Adams, 2023; Adams et al., 2022, 2024a, 2024b).

Transparency in the way research is undertaken and how decisions are made, enables trust to be built and maintained between the researcher and those involved in the research process (Substance Abuse and Mental Health Services Administration, 2014). Trust and transparency are common principles in research involvement and engagement (Devonport et al., 2018; Foster et al., 2021; Hayes et al., 2012; Hickey et al., 2018). Building trust takes time (Devonport et al., 2018; McGeown et al., 2023). An initial step in developing transparency is co-creating a group agreement (Adams, 2023). This can range from having clearer processes, such as confidentiality and safeguarding, to less standardised processes, such as group behaviour, ways of working, and what involvement will look like, to having clear transparency across the people you are working with on how things will be done. As a researcher, there also needs to be flexibility to ensure that the people you are working with can contribute and identify any items that missing. One element that is particularly pertinent, is having clear expectations about the role of the lead researcher. The potential for blurring in the role of the researcher in the minds of those we are working with should also be considered, as this boundary or relationship blurring is challenge in many dynamics between people experiencing homelessness and those who support them (Kidd et al., 2007; McGrath & Pistrang, 2007). The reason we feel this is important in the context of research is the time restrictions around research and the natural endings that take place. Ensuring clarity in the role of the researcher from the outset ensures issues relating to safety are reduced and that trust is built in such a way that someone does not feel let down when a study ends.

Transparency in how feedback and involvement are shaping research has supported this. Researchers need to avoid tokenistic practices in research (also see Jackson et al in this collection) because tokenistic involvement leads people involved to feel as though they are not seeing the impact of their involvement. Our research practice experiences have enabled us to understand that people we work with share frustration around constantly repeating themselves or feeling unheard. One way we address this is by ensuring that when we receive feedback or specific input, we return to the person or group and clearly communicate how this has changed or shaped the research (Adams et al., 2022, 2024a, 2024b; Harland et al., 2021; Perry et al., 2021). Not all input will always be incorporated, but being honest about the thought behind the decisions increases transparency and ensures a trusting relationship is built. It often comes down to ensuring that when researchers say they are interested in hearing from the lived experience members, that is then acted upon or given serious consideration.

Good collaboration in research involvement requires a researcher to understand what partnership or meaningful involvement looks like and a recognition that there needs to be an active effort made to address power. Power in this context is concerned with how decisions are made and priorities are set. One of the first things to consider with this is how to create inclusive opportunities for involvement and co-production in research (Hickey et al., 2018). A collaborative partnership between a researcher and the people they are working with means that there are appropriate measures in place to support people to be involved. In our experience, this has involved early conversations on everything from providing transportation to attend activities in person, offering printed or digital copies of documents based on preferences, and providing ways to support joining activities remotely (Adams et al., 2022, 2024a, 2024b).

Effective collaboration requires a shared understanding of aims and goals in discussions or meetings. Unstructured approaches can lead to people feeling as though nothing was accomplished and things were difficult to follow. On the other hand, when it was overly structured, discussions could feel rigid and stagnated. Researchers can come in with an initial idea of what the session will focus on. However, it is important to have a conversation with the people who you are involving so that the goal is reflective of everyone's priorities. When in-person, it is important to have a visible means of recording and illustrating the overall aim of the day and to capture key points/areas of the discussion (Adams, 2023; Adams et al., 2022, 2024a, 2024b). To respect that sometimes discussions would move away from this central area of discussion, we had a ‘parking lot’ for other ideas where we would write things down that could be returned at a different time, so that we could return to the original discussion area.

As a researcher, ensuring there is a shared mutual respect for everyone involved, but also a constructive way to voice distrust, disagreements, and discomfort, is essential. Working with colleagues and agreeing on strategies and responses to in-group conflict is key, as is maintaining an open line of communication to speak about concerns, so that we can put measures in place to address them.

In the context of co-producing research, peer support and shared lived experience encompass several elements in involvement activities. Instinctively, through having people involved in research studies based on their own lived experience, experiences will be shared. The way in which researchers handle the sharing of experiences within a group context without causing harm to the person sharing or others is challenging. We have often worked with networks of groups and employed buddy systems in our studies, where people involved are put in self-identified pairings to ensure people have access to someone to speak to outside of the context of regular meetings (Adams, 2023; Adams et al., 2024a). The value of peer support outside and within the research activities is important. Similarly, a lot of the techniques used in creating psychologically safe environments ensure that any sharing is done in a way that does not risk oneself or others. Many of the people we work with have experience with peer support groups, so having an understanding of how those experiences might be different or the same as peer support in the context of a study is extremely important.

Empowerment, voice, and choice can be operationalised differently for everyone. In early stages of our studies where there can be a greater degree of involvement, we have often had one-to-one conversations with the people who would be involved to understand if they have been involved with research in the past, what skills they bring to the study, and what they hope to achieve from being involved (Adams, 2023; Adams et al., 2022, 2024a, 2024b). Having discussions like this is empowering, and they enable people to identify their role, their needs, and how they want to be involved. From this, we start to understand the learning needs and training requirements for each person. Training can be formal and informal in orientation and process, and ensuring people have the choice of appropriate training, resources, and understanding to actively participate in involvement activities ensures people are empowered to be involved. An example of this is where we have provided bespoke training sessions on the six steps of reflexive thematic analysis (Adams et al., 2022, 2024b). Although framed as ‘sense-making’, these sessions provided the base skills for people to be actively involved in the data analysis process.

People may also want to opt out, and ensuring people have a voice in the research they are involved in is essential. How this looks will be different for each person, but having open and ongoing reflections on the different activities and how things are done will support this. This is also relevant when we are looking to consider how we share the findings of the work. Having the relationship built over the course of a research project ensures we can have open conversations about the best ways to share what we have learned.

Researchers need to move beyond an awareness of past experiences of stereotypes or biases and to creating spaces that address and reduce stereotypes and bias and ultimately reduce the trauma linked to these experiences. This will be different for every study, but might involve gender inclusive or gender specific spaces, recognition of variations in cultural or religious norms for group discussions. The best way to identify biases and stereotypes is through open communication with the people you are working with, but to also explore your own positionality, possible biases and then constantly engage in a sympathetic critical appraisal of your own motivations, and practices. For the communities we work with in our studies, one of the biggest challenges we face is around previous experiences and perceptions of stigma (real and anticipated), labels and the terms used to describe people. In our research, the terminology used to represent those involved in the research process has changed over the past few years, starting out with terms like ‘peer researcher’ and ‘Expert by Experience’ to more recently using ‘a person with lived experience’ (Adams et al., 2022, 2024a, 2024b; Harland et al., 2021; Perry et al., 2021). Our shift towards focussing on using a person or people with lived experience(s) is that the people we worked with did not always feel happy saying they were an Expert in something. Some have identified they would not want to be an Expert in something like homelessness or trauma. The most important learning from this is having flexibility and ongoing conversations to ensure the terminology we are using is reflective of what people feel most comfortable with.

Negative past experiences of research may impact the confidence someone might have in engaging with a researcher or in the ability to develop a trusting relationship. On the other hand, a positive experience can set a precedent for what can be expected and lead to disappointment. One thing that can help is to complete an assumption mapping exercise for both the researcher and the people involved in co-producing research (Bland & Osterwalder, 2019). Having a clear idea of what people can expect from being involved and ensuring the ways we are involving people do not further perpetuate stereotypes and biases is essential.

Being aware of trauma and using trauma-informed approaches to research is important to people who engage in research and to us as a research community. It is also a central concern if we consider that the groups we may be involved with want to build capacity and get involved in more research. This chapter presents some of the ways we have introduced these principles in the research we have undertaken with people who experience homelessness. However, it is meant to be a starting point for researchers to consider how this may shape and inform their own involvement or co-production activities. Underlying all the principles described are concerns around power, assumptions, and expectations, but we argue that collaboration and open communication can begin to address these. No approach will ever be perfect, but ongoing reflective practice on the concerns we raise here will ensure researchers can maintain an awareness and understanding of trauma and its consequences, while ensuring meaningful involvement takes place.