Empathy by Design: Integrating Social Responsibility in Trauma-Informed Practices

Janice Hannaway, Jane Reid at UXDX Community: Empathetic UX: Merging Gamified Research and Social Responsibility. Video: https://youtu.be/RAFcrhGowAU

Readable transcript: edited from the recording's captions for readability (fillers and false starts removed, punctuation and section headings added). Wording is the speaker's own. Timestamps are positions in the video. Names marked [?] could not be verified against the audio.

What trauma-informed practice is, and why it matters

[00:00:00] Jane: Hello, thank you. Can you hear me okay, Rory? Yeah. Good evening, or good afternoon depending on where we all are, and a big massive hello from bonnie Scotland. I'm Jane Reid, I'm a user researcher, and I'll be presenting tonight with my colleague and co-founder of ResearchU Training, Janice Hannaway. Janice is a user researcher and a trauma therapist. Together we have combined therapeutic and research practices to deliver accredited training, to teach people how to do trauma-informed design and research. So we'll talk you through what that is and how we do it, we'll give you a brief overview of that.

[00:00:44] Jane: As Rory said, tonight we're talking about empathy by design, integrating social responsibility in trauma-informed practice. So we'll break that down for everybody.

[00:01:03] Jane: So what is it and why is it important? Integrating social responsibility in trauma-informed practice for design and research involves understanding the impact of trauma on individuals and communities, and consciously creating products and services and systems that acknowledge and accommodate these effects. It empathizes with those who have experienced trauma and seeks to empower them in the design and research process that we facilitate, prioritizing people's experiences.

[00:01:42] Jane: So what is trauma-informed practice and its purpose? Next slide please. This definition, and it's been adopted by gov.uk, is from the US. The purpose of trauma-informed practice is not to treat trauma-related difficulties, which is the role of trauma specialists like Janice and other practitioners. Instead it seeks to address the barriers that people affected by trauma can experience when accessing services, and we'll take you through an example of that later. Next slide please, Janice.

Seven things to practice

[00:02:22] Jane: So how do we do this? We've picked out seven key points that we practice and that we want to share with you in the time that we've got. So if we move on to the next slide please, Janice. First of all, educate your team. We have to ensure that all team members, design and research and wider, understand the principles of trauma-informed care, including safety, trustworthiness, choice, collaboration and empowerment.

[00:02:47] Jane: User-centered: we have to conduct our practice of design and research through a trauma-informed lens. We need to be sensitive to the possibility that participants may have experienced trauma, and obviously following COVID there's a high likelihood it's more prevalent. So this affects how we approach our interviews, our surveys, our user testing.

[00:03:11] Jane: We're prioritizing consent. We need to be able to allow participants to skip activities that may retraumatize them or are triggering for them, and we have to make sure participants and service users can actually control their experience. So for example, easily finding privacy settings to keep them safe, or additional content warnings.

[00:03:38] Jane: Accessibility: ensure your design is accessible to all, including those with disabilities. Trauma can manifest or coincide with physical or cognitive disabilities, so universal design principles are crucial here to make sure that we don't exclude people. Next slide please, Janice.

[00:04:02] Jane: So community and stakeholder engagement. This is critical and we'll talk about it in an example later. Work with our community organizations, stakeholders and individuals who really understand the lived experience. Sometimes we're not the best people to design and research with certain groups. We need to have a bit of an education process first. They can provide valuable insights and help co-design solutions that really are genuinely trauma-informed.

[00:04:32] Jane: Ethical considerations and privacy. We really need to be vigilant about our privacy and data protection. Trauma survivors may be particularly sensitive about their personal information, so we have to ensure that our service has strong, user-friendly privacy protections.

[00:04:53] Jane: Ongoing evaluation and training. We must regularly evaluate the effectiveness of our trauma-informed approach and be prepared to make changes based on what we learn. So ongoing training with your team to stay current with best practices in the trauma-informed space. There's some good examples out there that we can share later. So I'm going to hand you over to Janice, who's now going to talk us through some of the risks of working in this space. Thanks, Jan.

Three kinds of responsibility, and the gap for researchers

[00:05:25] Janice: Okay. So when we think about social responsibility, we think about looking after society in general, and when you put that into the user-centered design space there's three areas there that we need to think about to be responsible to the people that we're working with. We have a responsibility to researchers and designers, we have a responsibility to participants, and we also have a social responsibility in delivering service design that meets the needs of people, of society. So when we consider all of that we need to look at them individually as a socially responsible corporate organization or individual.

[00:06:14] Janice: If we think about researchers and designers, this is an image that we use when we're doing our training, and this is an image that we share mainly with user researchers, because they're the people on the front line. They're the people that are listening to all the complex stories, all the trauma, so they're the people that are probably most vulnerable to it. However, the full UCD team will hear the information they bring back. Quite often designers will be in the sessions with them taking notes, and quite often as teams they discuss the content of the sessions.

[00:06:51] Janice: Now if you look at this diagram and you look at a therapist, which I am also: if I'm carrying out therapy with people who have post-traumatic stress disorder or complex trauma, or the effects of complex trauma, or they've experienced anything really bad or unhealthy, I'm looked after. The social responsibility for me is maintained, because I have to go, ethically, and I have to attend clinical supervision, and I have to do that for every 12 clients that I see. Now that is regardless of whether it's trauma I'm working with, or depression, or relationship issues, anything. You have to go to maintain your accreditation, but also to make sure that you've been socially responsible for the people that you're working with and the clients that you're there to help.

[00:07:45] Janice: So when I moved into the area of user research it was something that I automatically saw was missing, that social responsibility for user researchers, for the wider team. It wasn't there. Because if you think about, if you've ever worked in an agile team, which probably a lot of you have on the call tonight, you know it's fast, you know it's rapid. You're building a product, your user researchers are out there, they're interviewing, they're bringing back, you're starting your design, you're then going back out, you're iterating, you're having meetings with the team, you're sharing the content. And that can go on for quite a few months, sometimes up to six months.

[00:08:26] Janice: So if you imagine all of that's going on and people are hearing all this complex and traumatic information, there's nowhere that they can go to offload that, or there's nobody there that's saying ethically you have to have some sort of supervision, or even reflective practice, to maintain your psychological safety and take risk away from you. I think it's really important to share that just to show the differences here, but also the similarities. The similarity is in what we hear. As a therapist I'm solving a problem for a client. As a user researcher I'm also solving a problem for a client, and that client is the participant, the user of the service that I'm involved in designing. So I think that's important just to note, in terms of risk and social responsibility and how people working in UCD can be exposed.

The vessel: how trauma builds up in a team

[00:09:25] Janice: So if we move on to the next screen, and it's me that's moving the screens, I apologize. Okay, so we've moved on. This is something as well that I do quite often when I'm working in groups, and I think it's really important to share this with everybody, just for yourselves, just to take note of this when you are working in any environment. We'll just use the example of user researchers, designers, service designers, content designers within a UCD space.

[00:09:45] Janice: So you set up to your work and you're feeling okay, and if you imagine yourself in that space and you imagine yourself as this vessel, and things are okay in work, you're feeling professional, you're feeling calm, you're feeling confident, you're feeling useful, you're happy and you're focused. You are safe, you're not at risk. So your employer is maintaining this corporate social responsibility for you, because you're okay.

[00:10:17] Janice: However, if you continue to do interviews and you're hearing traumatic content and you don't have that outlet that the therapist does have, and you're working in an agile way and it's repetitive, iterations are happening and you're continuing to hear things and you're hearing trauma, it starts to build up inside people, inside that vessel, and that vessel is you. Now if that's starting to build up inside you and there's no outlet for that, it can become quite risky.

[00:10:52] Janice: So what we tend to do with images like this, particularly when we're training people, is encourage people to be mindful of when they're at that point, and if they're at that point where they're feeling a wee bit not quite like themselves, then do something about it to get the risk reduced and you're back to safe. Because what we don't want is people in this situation, as the vessel, with everything piling up that they're hearing. And what happens is they get burned out, they get imposter syndrome, sometimes people end up in addiction because they can't cope with everything that they're hearing.

[00:11:35] Janice: Because what we've got to consider is that traumatic content can cover all sorts of things, and you never know when you're in a situation and you're doing interviews to bring insight back for the development of a service what you're going to hear. So in terms of this social responsibility of trauma-informed practice, it's really important that everybody collectively is mindful of the harm that it can do if we don't look after ourselves. We both feel it's really important to share that.

[00:12:08] Janice: So the next thing is where we want to be. We want to regularly be emptying out those difficult pieces of information we hear, or the impact that they have on you, because we're human beings. Sometimes when we hear traumatic content it can resonate with our own lives, which can trigger ourselves, or it can just be so overwhelming and overpowering that it actually stalls you and you can't move any further, and that's when burnout and everything starts to feed in and it really immobilizes people.

[00:12:39] Janice: So one of the things we can do here to avoid risk and to maintain social responsibility for our teams, for everyone, is to encourage some sort of reflective practice and safety for the people that are working with trauma, because you do have to be trained to process it appropriately, or have really good support networks there to make sure you're okay.

The risk to the participant: retraumatization

[00:13:06] Janice: So the next thing is about the participant. When we think about the participant and the risk to the participant, the big risk for me is retraumatization. Because you could have a participant coming to you and the participant sharing really detailed, horrendous traumatic content, and they want to share it with you because they've been invited there and you're doing research, you're very kind to them and they feel quite comfortable. So what can happen is that the participant can share really, really strong, overwhelming stuff, and what we have to do here is make sure they're okay. What we don't want to do is retraumatize, because if we're retraumatizing you, they're leaving you to go on and you don't know what harm's going to come for them.

[00:14:02] Janice: So integrating social responsibility into trauma-informed practices involves, as we said earlier, understanding the impact of trauma. It's understanding the impact on individuals, and those individuals are the participants. So we need to know when they present in the room with us if they're doing anything that's not normal, and that can be verbal, that can be non-verbal. It could be they could potentially dissociate, which is an effect of trauma where they almost leave their body and they're really overwhelmed, and they could break down crying, they could do all sorts of stuff, they could start shaking. And sometimes they present and you might not be aware of the fact that they have actually been retraumatized, so you need to be very careful.

[00:14:53] Janice: Quite often what we come across is people who are in the user-centered design space who are interviewing trauma survivors, or people who have gone through complexity, and they don't know what to say to them when they maybe disclose something, because they're shocked at the words that they've heard, or they see the participant getting upset and it stalls them because they just don't know what to do. So quite often we hear things like, I felt shocked, I was speechless when someone shared their story, I just didn't know what to say or do. Other people have said, I felt really sad, how do I manage my own difficult feelings when someone shares that with me? So then you're tapping into the user researcher, the designer, the content designer, the people involved in actually doing the work. So it affects everybody.

[00:15:50] Janice: Other things: I would like to learn appropriate interventions for working with trauma so that they can actually keep people safe. And people are frightened that they retraumatize. I think it's really important again just to identify that this is a risk, and as socially responsible individuals and professionals we need to take cognizance of this, and we need to make sure that we pose no risk to people, because it's not authentic and it's not the right thing to do.

[00:16:23] Janice: One other thing that's really important when interviewing participants is empathy. To empathize as much as you can, to be there with them in the room, but not to sympathize, because sympathy can often make people worse, it can actually fuel the retraumatization. It's almost like, someone brought something to you, they said something, and you started getting really, oh that's terrible, oh you must feel really sad, you must feel really bad about that. That's sympathy, and that can make them worse. Whereas empathy, it's just about body language, it's just about listening, it's just about eye contact. I hear you, thank you for sharing that. So there's a difference there, and people often need to know what to do in situations like that.

[00:17:10] Janice: So I'm just going to move on, and Jane's going to share something with you just now around the risk associated with the actual service design. So that's the three areas that we wanted to touch on today, and I'm just looking at the time and we're okay for time.

An example: the exit this page component at gov.uk

[00:17:29] Jane: You can just skip forward, Janice, to the service design slide, we've covered that. So at the start we spoke about seven key things that we should all be practicing, and some of you might be doing it but we've just never thought about it as being trauma-informed, so it's good to go back to review your practices. We wanted to just share an example, if you move to the next slide, a good example of trauma-informed practice in gov.uk. The message is really getting out there now, we've trained a lot of the big departments, so Ministry of Justice, if we just move forward. We'll share the link to the blog post with you. So Justice Digital, trauma-informed design: how they work together to develop an exit page.

[00:18:13] Jane: We had mentioned at the start about privacy, safety, making sure content warnings, all that kind of stuff. So if we move forward to the next slide here. They had identified a high-risk gap in the service for users seeking legal aid for support for domestic abuse. They needed a way to hide information they were viewing from the perpetrators. It was putting them at real potential harm, and they also recognized they needed a subject matter expert to guide them.

[00:18:47] Jane: If we move to the next slide please. As a result of the collaborative work that they did, and they were working under a real context of urgency, domestic abuse had increased during COVID, they had to design rapid concepts, get out there, produce and test them. So the design went from exit the site, to hide the page, to exit this page, a new component that's been put in the library at gov.uk that all services can benefit from. We'll just move to the next slide.

[00:19:22] Jane: So this is the slide here. We'll share the link with you, it's really useful to go and read the blog post. So people can now click exit this page and it hides where they've been. So if a perpetrator comes into the room, over their shoulder, they can use this new component in the library, the design system. We just wanted to highlight that word is getting out there, people are now taking this seriously. We are on a mission to try and keep designers and researchers safe, and this is a great example of that.

[00:19:56] Jane: And yeah, we could talk all night about it, we just have a short time, so we just thought we would end on that example. As I said, we'll share the link with you. Get in touch with us on LinkedIn, and we've got some podcasts and stuff we've been on talking about this. It's great to be here tonight to help share that message. If we've got any questions, I don't know Rory if you're taking questions now or later, but happy to answer any questions that people may have, and thank you for listening to us for the last, what, 25 minutes I think.

Q&A

[00:20:35] Rory: Thank you, thank you very much, that was really interesting. I guess it's an angle that you don't hear as often. It's a very important angle, but you don't hear it as often, kind of people talking about it both from the end person that you're interviewing as well as the interviewer's side of things. So if anybody has any questions out there, just please post them on whichever channel that you're watching this on and we'll put those questions through to the team here.

[00:21:07] Rory: But I'm just going to launch it off. One of the places I worked actually was a legal health center, and Christmas was horrible, because all I could hear was, you have a right to see your child, your child has a right to see you, but you do not have a right to see your child. Probably 90% of the phone calls were the exact same thing, and even just overhearing it in the background you can kind of understand what people are going through. So what advice do you have? You were kind of saying that all these things can happen to the researchers, or in that case the call center people. What can they do as a company or as whatever to, as you were saying, empty the bottle? What tactics can you use?

[00:21:49] Jane: Do you want to take that one, Janice?

[00:21:52] Janice: Yes. I think what they have to put in practice, Rory, is something in their ethical guidance whereby they're showing that they're looking after the health and safety of their staff. One way of doing that is an addition into ethical practice whereby people in the team have to do reflective practice, it's mandatory, because it's very positive, and often reflective practice can bring up unconscious feelings that people have. If people do that, you can do group reflective practice, you can do it in twos, whatever suits individuals. I think that's a starting point.

[00:22:32] Janice: I think training and developing as well in this space, because you can't expect people just to go into an interview in this space that have no training around it, because people freeze, and quite often people are frightened to own vulnerability as well. So if you're a worker in an organization and you're assigned a piece of research to do to build a new product, and it cuts across trauma, because that's very traumatic you've just mentioned, if it cuts into a space like that you might feel vulnerable going back to your organization and saying, I found that really difficult, I couldn't really do that, I don't even know, at one point I froze, I felt really sad. People feel vulnerable when they have to share things like that.

[00:23:20] Janice: So I think it's allowing people to have a vulnerability and encouraging vulnerability, because quite often vulnerability is the cornerstone for growth. But primarily organizations need to look after staff and bring in reflective practice and make sure people are okay.

[00:23:41] Rory: Yeah, excellent. Jared has just made a comment that he's a former mental health clinician now working in UXR, so he loves the topic. So thanks. The other one I guess is, are there any symptoms that people might recognize where they've bottled something up, or they don't realize that this is actually impacting them? Because a lot of people like to think, oh I'm just doing my job, I'm compartmentalizing. But are there any symptoms that people could be aware of?

[00:24:11] Janice: Yeah, one very common one, and we all do this in everyday life, is if you are going through something difficult or something's going on inside you that's still unconscious, or it hasn't quite come to your mind yet, you could go to an interview and you could do an hour-long interview and you could come out of it and you remember nothing. That's a very common one, and that's a sign. If you've totally disengaged then there's something within you that's driving you to disengage, and it's quite often that your body, your mind just can't listen anymore, or you've heard too much.

[00:24:53] Janice: Another one is where people's stories morph into one. That can be quite common as well, you can't separate out individuals, that's a very common one. Symptoms on oneself as well, physical symptoms. A lot of people maybe start getting symptoms in the body, backache, headaches. There's also emotional signals, and sleep patterns are disrupted. If you're taking that extra glass of wine a night when before you didn't, all that sort of stuff. Disengaging from family. So there's lots and lots of things that can happen to people.

[00:25:25] Rory: Excellent. Well, that actually brings us to time. But James just put a comment: the Scottish government have an excellent ethics checklist and commitment to trauma-informed practice which is worth taking a look at. So if you want to share that with us we'll send that out to everybody, if people are interested in reading more on the topic. But that does bring us to time, so I just want to thank Janice and Jane for sharing an amazing case with me. Thank you.

[00:25:51] Jane: Thank you. Thanks everybody.