Consider the following scenario, which may contain sensitive content for people who have experienced sexual assault.
For instance, a Veteran who experienced sexual assault or sexual harassment during their time in service, also known as Military Sexual Trauma (MST), may have physical or psychological symptoms related to that experience.
If that Veteran seeks disability compensation related to MST, they must write a detailed description and submit evidence that connects their current condition – like PTSD – to the event(s) that happened during their service. This can include gathering documents such as medical or police records and undergoing a medical evaluation.
At Ad Hoc, we often help agencies design services to address those traumas, and we’re developing a trauma-informed research practice to help agencies provide assistance without triggering existing wounds or creating new ones.
By helping agencies better understand trauma, we can help them improve how they meet the needs of individuals and co-create safer environments where they are better heard.
The value of a trauma-informed approach
Our initial trauma-informed work, such as with Veterans using VA.gov, has demonstrated that these methods are fundamental to supporting research participants. We’ve seen that a trauma-informed approach to research helps us create better studies by:
- Encouraging human-centered processes, not just outcomes
- Creating safer environments for participants
- Guiding collaboration between researchers and participants, which enables participants to have a more equal voice in the development of digital services
- Creating safer and more sustainable work environments for our researchers (particularly those from underserved communities)
But individual trauma-informed studies aren’t enough. We’ve become more aware of the prevalence of trauma in all the people involved directly or indirectly in research (including facilitators, stakeholders, and family members), so we’re working to standardize the lessons we’ve learned in these studies and broaden them to our entire research practice. We’re doing this to better serve our participants, our researchers, and our government customers.
Understanding trauma in government services
Trauma has been defined in many ways over the years in clinical, academic, and cultural contexts. Various types of trauma may include:
- Acute trauma from a single incident. For example, a car accident or an assault.
- Chronic trauma from repeated and prolonged experiences. For example, exposure to war or a pandemic.
- Racialized trauma from the effects of racism on one’s mental and physical health. For example, experiencing anti-Asian hate crimes during the COVID-19 pandemic.
- Historical trauma from intergenerational and racialized trauma. For example, the systemic experience of white supremacy (slavery, Jim Crow laws, mass incarceration, police brutality) on Black people in America.
To better help us understand trauma in our work, we turn to Rachel Dietkus, a leader in trauma-informed research:
“Trauma is a response to anything that’s overwhelming and that happens too much, too fast, too soon, or too long. It is coupled with a lack of protection and 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.”— Rachael Dietkus, Trauma-Responsive Design Research: A New Model of Change
This definition helps us imagine how a participant may display signs of trauma and highlights the importance of context for trauma-informed work. Research studies that are unprepared to identify and handle sensitive contexts may risk retraumatizing or otherwise harming participants.
In the context of government digital services, this can be an immediate disservice to research participants while also negatively impacting the quality of research insights and the ability of teams to design equitable, human-centered experiences. Practicing trauma-informed research helps mitigate these risks to individuals and to the customer experience of digital products.
Our working definition
From here, we developed our own working definition of trauma-informed research:
For a research endeavor to be trauma-informed, it must involve understanding trauma, planning studies and sharing decision-making with participants, and being prepared to respond to trauma throughout research for everyone involved. For example, giving participants choice in how a research session is run, not pushing participants to recall something painful, and having a protocol and a set of resources in case trauma begins to resurface or is triggered.
We’re starting with a working definition because we want to acknowledge that:
- What it means for a research practice to be “trauma-informed” exists on a spectrum, from being unaware to being proactively responsive as an organization.
- The meaning of “trauma-informed” continues to evolve within the fields of research and design.
- We know we have more to learn. We’re actively expanding our understanding and our practice of what it means to be trauma-informed.
We believe that refining and incorporating this trauma-informed approach into other areas of our work will help our participants feel more comfortable and supported in our research studies. Using a trauma-informed approach provides a more human-centered way of co-creating balanced relationships between researchers and participants, while creating safer environments for everyone. We believe all of this will make our studies more successful — even when topics are sensitive.
Trauma-informed research principles
In addition to having a working definition, we needed ways to take action within our individual studies and within our research practice. We decided to rely on six principles developed by the CDC’s Office of Public Health Preparedness and Response (OPHPR) in collaboration with SAMHSA’s National Center for Trauma-Informed Care. These serve as a strong foundation for expanding our trauma-informed work. Based on these principles, here are questions we ask ourselves as we propose, scope, and evaluate research:
- Safety. Will users feel emotionally, physically, and psychologically safe in our research?
- Trustworthiness and transparency. Have we explained our research goals and methods in plain language to our participants? Have we confirmed that they understand our goals and methods? Have we answered any questions they have?
- Peer support. Can we offer participants support from other individuals who share similar traumatic experiences? How might they involve the people whom they care about in the study? Can we have a trained medical professional present?
- Collaboration and mutuality. Are we collaborating and sharing decision-making power with participants, medical experts, and other partners?
- Empowerment, voice, and choice. Are participants empowered to have influence over the design, product, and service decisions that may impact their lives in the future? Is the research plan flexible enough to afford a more personalized approach?
- Cultural, historical, and gender disparities. Are we able to identify and understand our own biases and avoid stereotypes? Is our team diverse enough to effectively identify and account for their own biases? Are we familiar with structural barriers and the historical impacts of trauma?
Expanding a research practice to include trauma-informed approaches can seem daunting, but we are confident that they will become a standard part of how we work and bring value to the digital services we build. We believe proactively engaging with the complexity of trauma is worthwhile because it will better support the safety of our participants and improve the quality of our studies. In turn, we believe that this will enable us to provide the best possible support for our government customers.
As Ad Hoc continues to develop its own protocols and resources to conduct research responsibly, we are eager to share them. We hope our work will encourage other research practices to join us in adding trauma-informed practices and safeguards to their own work. Together, we can move the field of user research towards a more mutually supportive and equitable framework.
The authors acknowledge the efforts of Anna Higgins, Melinda Bernardo Cuerda, Elissa Frankle Olinsky, Pam Hastings, Heather Roy, and their colleagues in the Research Ethics in Government Working Group in creating this post.