Why trauma-informed approaches are vital to design and research

Image credit: Toa Heftiba via Unsplash.

Content note: This post mentions definitions of trauma but does not go into detailed descriptions of events. The linked resources also discuss trauma.

At the start of June, I had the opportunity to attend and speak at UX Scotland in Edinburgh. I came away fired up from conversations with practitioners grappling with the complexities of design in 2023 (yes, AI did come up). If you want to find out more about the conference, slides from talks are available on the UX Scotland Programme page. (There have also been several great write-ups. These are the ones that I’ve come across so far: Stéphanie Krus, Katie Dickerson, Roger Attrill)

One of the key themes from the conference talks was that inclusion is imperative if we want to do good, user-centred work in our increasingly complex world. True inclusion is not about holding focus groups or doing usability testing on a product. Inclusion thinks about all of the stakeholders of a service:

• users and their communities
• the teams creating the service
• the people funding or sponsoring the service
• and those impacted by the service even though they don’t use it

Inclusion casts a wide view. It needs to be grounded in community, it needs to be equity-centred, it needs to be intersectional, it needs to be participatory (radically so), it needs to be justice-driven, and it needs to be trauma-informed. It was heartening to see so many talks focusing on the importance of true inclusion. Doing this in practice, though, is incredibly challenging in the contexts in which we work.

My workshop focused on trauma-informed approaches to design and research (crucial if we are striving for inclusion) and the challenges we face in embedding it into our work and organisations. Over the next few posts I’m going to discuss trauma-informed practice, and some of the barriers we face in working in this way as researchers and designers. I hope that in understanding and calling out our constraints, we can find ways to work around and within them. I also want to share some of the insightful ideas the workshop group generated for trauma-informed practice.

But first off — what do we mean by trauma? And what do we mean by trauma-informed?

Defining trauma (ish)

I started the workshop by walking through some definitions, to set the frame of reference for the group activities. With concepts like ‘trauma’ (as with ethical design) language-setting is particularly important. There is no single fixed definition, definitions can vary depending on the lens you apply. Some people are looking at trauma from a psychological perspective, others from a clinical perspective. Some people start from a social work approach, others have a community justice lens. The concept has also evolved over time, as understanding has deepened and different perspectives have been incorporated. It is also subject of ongoing discussion and debate in both academic and practice settings.

Part of the nature of trauma-informed work is being comfortable with complexity. There is not always a check-box, straight-forward answer for everything. Particularly when it comes to humans and communities. All this to say — I’m not going to give you a straight answer for “how do we define trauma”. Instead, I will give some things for you to consider.

Initially trauma was thought of as a specific violent or life-threatening event like experience of war or sexual assault. This was often described as a “traumatic event” and as a one-time or time-bound experience. Phrases like “actual or threatened death or serious injury” related to “experience of an event” were previously used in the DSM IV definition. Many people conceptualise trauma in this way still.

Trauma scholarship now looks wider than this. It recognises that trauma can also be the result of continued or ongoing exposure to certain circumstances. Or can be related to happenings that traditionally may not have been considered traumatic.

This definition from the Substance Abuse and Mental Health Services Administration (SAMHSA) in the US is often used as a starting point. Trauma is defined as the result of:

an event, a series of events or a set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being.

This definition takes a wider view than the first definitions. It considers that trauma may not only be related to ‘an event’, but could result from ongoing experiences such as coercive control or abuse. However it emerges from a westernised and medicalised context, and does not consider collective harms to communities such as traumas instigated by colonialism and white supremacy. (This is a fascinating area. If you’re interested in trauma theory, please watch this video to find out more about the history of different conceptualisations of trauma.)

These are some of the different types of trauma that have now been recognised (there are more!):

• Acute: relating to a specific incident, such as witnessing a mass shooting
• Chronic: repeated and prolonged experiences, such as childhood abuse or neglect
• Complex: the combination of varied and multiple traumatic events
• Collective: affects social groups long subjected to interpersonal violence, structural violence and historical harm
• Intergenerational: trauma passed down through generations (basically the underpinning of the Disney film Encanto, and also the subject of Resmaa Menakem’s My Grandmother’s Hands)
• Vicarious, or secondary: an indirect experience of, or exposure to, trauma. For example, hearing a first-hand account of the event given by a survivor can be a traumatic and emotionally-challenging experience for the person receiving it

Vicarious trauma can be particularly relevant for our work as designers and researchers. We often spend time listening first-hand and in-depth to people’s stories. There is a risk that we could experience secondary trauma as a result.

Crucially, trauma is not the event itself, but the way our bodies respond to the event. This means that having experienced the same event, two people may have very different responses. In the case of vicarious trauma, you may feel a trauma response without having even been present at the precipitating event. It is completely personal.

Rachael Dietkus, who works at the intersection of social work and design, offers us this definition. This is an integrated definition from the work of Bessel van der Kolk, Resmaa Menakem and Karine Bell. In a design context,

Trauma is a response to anything that is overwhelming and that happens too much, too fast, too soon, or for too long.

It is coupled with a lack of protection or support. It lives in the body, stored as sensation: pain or tension — or is a lack of sensation, like numbness.

It does not impact us all in the same way. Context is critically important.

I find this to be a really useful definition. It incorporates the impact trauma has on people and their bodies, it does not focus on the precipitating event or circumstances, and it draws out the criticality of context.

Trauma-informed practice

Trauma-informed approaches were initially developed by doctors and social workers to assist with treating returning veterans of the Vietnam war. There was growing research into trauma and its impacts, and PTSD was recognised clinically in 1980. These approaches are now applied in a whole host of fields from health and social care, to architecture, to schools, policymaking, and there is a growing drive towards trauma-informed design and research.

Trauma-informed approaches begin from the understanding that any person may have some history of trauma, and the necessity to take that into account in all engagements with them. Something people talk about a lot is the concept of “universal precautions”. This is a medical concept referring to certain steps that medical professionals take for infection-control, like using gloves if coming into contact with bodily fluids. These steps are taken universally regardless of which patient you are dealing with, or your knowledge of their medical history. It better protects everyone from the spread of infection, and reduces stigma.

Applying this in our work would mean making a presumption that anyone we encounter could have experienced — or be experiencing — trauma. And to proceed from a place of being trauma-informed regardless of whether or not we know that they have experienced trauma. One definition for this:

Trauma informed [research and design] recognises the widespread impact of trauma and understands the need to create environments for healing and recovery, rather than environments and situations that could inadvertently re-traumatise. — Trauma-informed design research, Jax Wechsler

And importantly, what it is not:

The purpose of trauma-informed practice is not to treat trauma-related difficulties, which is the role of trauma-specialist services and practitioners. Instead, it seeks to address the barriers that people affected by trauma can experience when accessing health and care services. — Government working definition for health and social care

Being trauma-informed does not mean treating trauma. It means knowing your own boundaries and capabilities so you are prepared to handover to a professional if and when needed.

To take this from theory into practice, SAMHSA developed a framework of trauma-informed principles. The framework is used by practitioners (across disciplines) to shape their trauma-informed behaviours and activities. Crucially, it’s not a check-box exercise, but a mindset which takes continual practice, and adaptation to each new situation. Different contexts will call for different ways to implement a trauma-informed approach. The principles are interrelated and build upon each other; and they should be considered holistically.

• Safety: Prioritising the physical, psychological and emotional safety of users and staff (and anyone else involved)
• Trustworthiness and transparency: Transparency exists in an organisation’s policies and processes, with the objective of building trust among staff, users and the wider community
• Peer support: Throughout the process, it’s critical to think about how participants can support each other, as well as how researchers can support one another
• Collaboration and mutuality: Recognising the value of collaboration between and amongst staff and users in overcoming challenges and improving the system as a whole, creating a safe and supportive environment for collaborative working
• Empowerment, voice and choice: Making efforts to share power and give users and staff a strong voice in decision-making, at both individual and organisational level
• Cultural, historical and gender issues (intersectionality): Taking into account people’s intersecting identities, and having awareness of the ways cultural stereotypes and biases could impact people differently

Other organisations have developed frameworks to apply trauma-informed principles to their own context of practice. Those working in the UK public sector may be interested in the toolkit that the Scottish government has developed (drawing on SAMHSA and Fallot & Harris, 2006).

I also love the trauma-informed design principles developed by Chayn. They are a global non-profit that creates digital, multilingual resources to support the healing of survivors of gender-based violence:

Chayn’s trauma-informed design principles. Image credit: Chayn

These are particularly useful because Chayn has written extensively about how they apply the principles in practice. Often, a list of principles can feel aspirational. It is instructive to see the way Chayn actively practises the principles, and the challenges that come with that.

Why it’s important to designers and researchers

We’ve covered the what, I now want to talk a bit about the why. As I said in the workshop, perhaps I’m preaching to the choir here. People reading blogs or attending workshops about trauma-informed practice likely already get why this work is crucial. But it can be useful to frame a few arguments for people in our organisations who are less familiar with, or perhaps resistant, to this approach.

Reason 1: Without being trauma-informed, we pose significant risk to our users, our teams, and ourselves

People who have experienced — or are experiencing — trauma are all around us. They are on our teams, they are the users of our services, and we may even have experienced trauma ourselves. Trauma is a lot more prevalent than many of us realise.

It’s estimated that 70% of people will experience at least one trauma at some point in their life, 30% experience 3 or more. According to PTSD UK, 1 in 10 people in the UK are expected to experience PTSD at some point in their lives.

As human-centred researchers and designers, we seek to understand the lives and experiences of our users in order to design services that meet their needs. As we open up these lines of communication, and encourage people to share their stories, we also open up the risk of triggering trauma in our users. We might even create fresh trauma through the research process. The nature of the research setting can mean that vulnerable participants may experience research therapeutically. This is despite researchers not being trained in therapeutic techniques, or participating in clinical supervision. (Read Tad Hirsch’s article for a lot more detail on this)

We also open ourselves up to the risk of vicarious trauma and burnout, without the coping skills or support structures to work through it.

Many of us are not equipped to deal with the complexity of trauma in our roles. We often haven’t been trained, and we are not given the time to plan effectively, or to process when difficult situations arise. This is a risk.

Reason 2: We have power, whether we realise it or not

We might not always feel like it, but in our work designing services, we have a tremendous amount of power. Often a lot more power than the people who will be impacted by the services we create. Check out this brilliant talk by George Aye on the power asymmetry between user-centred design folk and our users.

Have you ever been in the position of researching with a participant where they think you are the government? Or that you have the power to get them access to their benefits, or the healthcare they need? It can be troubling to realise that their expectations don’t align with what you can actually do.

The perceived power we have can increase the risk of retraumatisation. People may feel their stories are exploited or that they don’t have choices or ownership over them. For many, trauma came at the hands of authority figures, or people in power turned a blind eye to what was happening. This can cause people to experience a reenactment of being disempowered.

This means we have a responsibility to share power and bring people into the design process as much as possible. We also must be clear about what we do and don’t have the power to influence.

Reason 3: We are uniquely positioned to influence

Finally, we are in a position to be able to influence. We can influence our own choices and decisions. We can choose to share information about being trauma-informed with our teams and our organisations. We can start to influence the processes and policies so that we can begin working in a more trauma-informed way.

In an ideal world, everyone in the team would know and care about trauma-informed approaches and embed them into ways of working. But experience shows me that this will fall to us as UCD practitioners to be the advocates of more human-centred ways of working. Accessibility and inclusion is meant to be a team sport, right? But how often do we find that it ends up being pushed aside or only really championed by the design team? (Not always, of course).

Where product, delivery, policy, technology or leadership people aren’t aware of the importance of trauma-informed working, I think it’s our job to use our influence to educate. We can start to shift attitudes and ultimately shift the way we work in our teams.

Next in the series

This post aimed to lay out a shared frame of reference for talking about trauma and trauma-informed approaches to research and design. But there is tonnes more to cover. In upcoming posts, I plan to look at the following areas:

• Ideas for practising trauma-informed approaches developed by the workshop group at UX Scotland
• What holds us back from working in a trauma-informed way? Considering the barriers and constraints within our roles and organisations. Thinking about how we can overcome these.
• Discussion of peer experiences related to exposure to trauma in our work, and the difficulty of facing those situations. Discussions at the conference reaffirmed my belief that so many of us have a story to tell in this area. Many designers and researchers are experiencing these difficulties, and perhaps we need to be speaking about it more?
• Sharing resources and networks for learning more about this topic

If you are working in this area, I would love to hear from you. I’m on LinkedIn.