Navigating distress during design research

Conducting Trauma Informed Design Research & Co-design

It is important that designers are?trauma-informed when conducting research with people who have experienced trauma so that they can help and not harm. Trauma is very common. Consciously considering where you can minimise stress for research participants can help to minimise the potential for distress. In this article I discuss (1) how and why people who have experienced trauma may move into distress, (2) some signs of distress to look out for, (3) how to meet distress should it arise during your research engagements, and (4) approaches to use when planning your research to help reduce stress and potential for distress.

While some groups, including mental health consumers, people with disability, Culturally and Linguistically Diverse and indigenous people, may have a high likelihood of trauma, 70% of people in the world may have experienced a trauma situation (Kessler et al,1917). Trauma can show up in places we may not expect, and is not restricted to specific cohorts or topics of discussion which is why it is important that designers work in trauma informed ways, know how to respond to traumatic distress should it arise, and understand the risks of vicarious trauma.

There are many different types of trauma. People may not be aware that they have been affected by trauma. For example, people are commonly impacted by intergenerational trauma (trauma that is passed down generations), Collective Trauma (trauma experienced by groups of people up to and including a whole society e.g. via CoVid and climate events), racial trauma (cumulative experiences of micro and macro-aggressions), and vicarious trauma? (trauma experienced through witnessing trauma situations or being exposed to other people’s account of traumatic experiences).

Participating in qualitative research and design workshops can be emotional experiences for people and can potentially lead to uncomfortable emotions, stress and feelings of distress. People who have experienced trauma can become overwhelmed easily and experience distress so it is important that researchers consider the potential for distress for participants. For someone with a history of trauma, being around anything that reminds them of a traumatic experience can make them feel like they’re experiencing the trauma all over again. People who have experienced trauma can also become triggered by very subtle things that we may not expect leading to experiences of distress. As people’s triggers can be very subtle (e.g. the scent of cologne), it is not easy to anticipate what may lead to someone feeling triggered and experiencing distress. I recently trained some customer experience designers who worked at an online accounting firm, They reported that during CoVid, small business owners were showing signs of distress during interviews. While it is impossible for design researchers to always prevent distress from emerging, we can be aware of this potential for triggering, and design our engagements with trauma in mind so that we minimise the possibility of us causing harm and distress through our work.

You don’t know when you might bump up against trauma and triggering (leading to distress) in your research, but having a plan in place can help you to be prepared. One way to minimise the potential for distress is to reduce potential for stress for your research participants, thinking about every interaction we may have with participants and consider how we might reduce potential stress for them at each step of the way. Also, having a plan in place, clearly outlining what actions you are going to take should distress show up can help you to take care of the distressed participant as well as?helping you to reduce the associated stress for you and your team.

Distress, Triggering and the nervous system

People who have experienced trauma can be susceptible to triggers that lead to distress. Triggering can occur when people are reminded of a past traumatic event or a stressor, that leads to distress. Triggers can be sensory (sounds, smells, images), situational (locations, activities, interactions), emotional (feelings, moods), or cognitive (thoughts, topics). They can be both internal and external. When people are in distress, their nervous systems respond by activating the body’s stress response leading to physiological and psychological changes to prepare the body to handle the situation. These responses are part of the body’s instinctive reactions to perceived threats or extreme stress.?If people perceive signs of threat, their nervous system can be activated and move out of its optimal zone of arousal.They may move into a traumatic stress responses such as fight, flight, freeze, fawn, flop, faint, tend-and-befriend, and shutdown when in distress.

Dr. Daniel Siegel?talks about the widow of tolerance (1999) (explanatory video about it), which refers to an individual’s nervous systems’ optimal range of arousal where they can effectively process and cope with stressors. When we are within this window, we are in a state of regulated arousal, and we can respond to life’s challenges in flexible and adaptive ways. When we are out of this window, we run the risk of moving into dysregulation, where we become unable to control or regulate our emotional responses. Experiencing adverse experiences can shrink our window of tolerance meaning we have less capacity to respond to situations and a greater tendency to react or become quickly overwhelmed. People who have experienced trauma tend to have a narrow window of tolerance. This is why people who have experienced trauma can become distressed easily. The good news is that it is possible to widen one’s window of tolerance.

Signs of distress

Noticing signs of stress an distress before it escalates further is important. Signs of distress can be quite nuanced and can vary depending on whether a person is in hyper-arousal (activated sympathetic nervous systems) or hypo-arousal (activated parasympathetic nervous system). It is important to be very present with people when conducting your research and be alert to signs of distress. Something to look out for is a change in their way of being. For example, if someone usually speaks in a lively voice and their voice changes to sound flat and they seem flustered or confused, they may be experiencing distress and it’s worth respectfully checking in with them to see how they are.

Signs of distress are not limited to these symptoms, but these symptoms are common.

Physical presence

• turning pale, turning red
• tears
• faster or slower breathing
• vacant look
• clenching tightening muscles/fists
• shivers, feeling cold
• profuse sweating
• gritted teeth
• monotonous voice
• fixed or glazed eyes

Cognitive and emotional presence

• difficulty remembering
• difficulty concentrating
• confusion
• long silence
• disorientation
• sudden mood change
• overreacting to a situation
• restlessness
• changes in communication style (from extroverted thinking to long silences)

The social environment

• cool or heated discussion
• dominating the conversation
• difficulty making eye contact or connecting with others
• withdrawing from conversation
• rising or lowering energy levels
• escalation of power differentials

Self awareness & Co-regulation

We are at our core relational beings and are linked, nervous system to nervous system. Our nervous system takes in information from our environments, from our physiological states, and also from the nervous systems of others. This process is called introception (coined by Stephen Porges in 2017). Our nervous systems constantly scan the environment for signs of threat. Clinician and educator, Deb Dana refers to neuroception and the nervous system as an ‘internal surveillance system’ (2018). People who have experienced trauma tend to detect threat often which can lead to triggering and dysregulation.

Coregulation is a process in which individuals help each other manage emotions, particularly in times of distress, through empathy, support, and calm interactions. It involves a supportive individual providing (you the researcher) a calm, reassuring presence that helps the distressed person achieve emotional balance. We are wired for this. Think of a baby. Babies are unable to self-regulate and rely on co-regulation from a care-giver to support their nervous system regulation. Our nervous systems communicate to each. Through calming your own nervous system, you are able to influence the nervous systems of others around you. This also means that if someone else is moving into dysregulation, we can exacerbate this by becoming dysregulated ourselves. If someone is showing signs of distress, and is moving into dysregulation, and your nervous system moves into dysregulation too, the other person will not feel safe and you can hinder their ability to self-regulate. This is why it is important to be self aware and to consider your own interoceptive states.

If someone else is becoming dysregulated, first take a few deep breaths or sense into your body (e.g. wiggling your toes) to try to calm your own nervous system. Next, adjust the tone, volume, cadence of your voice, proximity, body posturing, breathing etc., to a level that will present as calm helping the person you are interacting with co-regulate with your regulated, calm nervous system. You need to ensure your own nervous system is regulated before you are able to be that calming, supportive, empathetic person that the person needs in that moment.

Planning for stress minimisation

People tend to move into stress before the move into distress. So by reducing the chances of stress at every step of the way, we can reduce potential for distress. Designers often design customer journeys for customers and clients. Consider what kind of journey you want to create for your research participants. How might you uphold the principles of trauma informed practice? I have developed some tools to assist you to plan your trauma informed design research and co-design engagements. Below are some things you may want to consider when planning and conducting your research engagements.

1. Referrals/ Supports

Trauma responsive practice requires that referrals are made for people if they are showing signs of distress. At minimum you need to have contact information of a mental health support service that the person can connect with if they show signs of distress. It is important that the referred service providers are relevant for the person, e.g. age, cultural and gender appropriate. Collect local contact information for social and health support services (such as women’s shelters and gender-based violence support networks). Information about support/referral services and networks should be included in documentation that is given to all researcher participants/workshop attendees, ideally in paper form. You should consider supplying some referral numbers in advance of the interview or workshop, when the workshop begins, and during and after the workshop, especially should you notice signs of distress.

2.Risks & scenarios

When planning consider how might we reduce stress for out participants during their journey as a research participant? Map it! Design the participant journey considering every interaction point along the way. Consider what risks may emerge at the different phases of the process. For example during recruitment rejection can be triggering, or during workshops, participant literacy levels may not match activities. Use the principles of trauma informed practice such as Safety, Trustworthiness & Transparency, Empowerment, Choice, Respect for Diversity, and Collaboration (SAHMSA 2014 – NB there are a few different versions of these principles) as a guide to consider how you may uphold these at each stage.

3.Reflective practice

Reflective practice is so important when building your trauma-informed muscles. Take time to reflect after your engagement. This is how we learn.

4.Distress Protocol : A protocol for meeting distress

Create a distress protocol or a plan for what you will do should distress show up during a research engagement. Consider different risks and scenarios and determine who is going to do what. Make sure you include your referrals/support contacts in it too. Having a plan supports those conducting research or workshops to address potential distress and adverse reactions during and after engagements (e.g. interviews, workshops, testing sessions, meetings, focus groups, symposiums etc.)?For designers and researchers, having a distress protocol helps to protect participant wellbeing and mitigate short and long-term risks of participation in co-design and qualitative research. A distress protocol will give researchers clarity on what to do should a research participant demonstrate signs of distress. This will support the researcher to meet and hopefully mitigate participant distress, and also create ease for the researcher in situ by clearly outlining what steps they need to take. Through researchers being aware of and minimising their own distress responses and being able to calm their own nervous systems, participants can be influenced to self regulate through co-regulation.

Interested in learning more?

I have developed some new tools to assist you when planning your research experience. Learn more about online workshops where we will apply these tools to help you plan an upcoming research engagement.

Learn more about training on trauma informed design research for individuals and organisations.

References

Dana, D. (2018).?The polyvagal theory in therapy: Engaging the rhythm of regulation. W. W. Norton & Company.

Kessler RC, Aguilar-Gaxiola S, Alonso J, Benjet C, Bromet EJ, Cardoso G, et al. Trauma and PTSD in the WHO world mental health surveys. Eur J Psychotraumatol. 2017;8(sup5):1353383. doi:10.1080/20008198.2017.1353383.

Substance Abuse and Mental Health Services Administration. (2014).?SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach. U.S. Department of Health and Human Services.

Siegel, Daniel J. (1999). The developing mind : toward a neurobiology of interpersonal experience. New York : Guilford Press.

Porges, S. W. (2017).?The pocket guide to the polyvagal theory: The transformative power of feeling safe. W. W. Norton & Company.