Co-designing with research participants

About this series

Bloom champions research with people who use government services and systems. We learn about people’s needs, behaviors, and experiences to make services more human-centered by conducting interviews, testing, workshops, or by using other methods.

Many people have traumatic experiences that involve stress, harm, catastrophe and/or tragedy in the course of their lives. Traumatic experiences can be a single-event, called acute trauma; recurring events, known as chronic trauma; or multiple traumatic events that reoccur, known as complex trauma. Acute trauma can look like surviving a natural disaster, while an example of chronic trauma could be living with an abusive household member which leads to frequent and ongoing traumatic episodes. Responses to trauma vary, but research shows trauma often has significant, lasting effects on peoples’ lives, especially their health and well-being.

In Bloom’s design research practice, we often work with people who have experienced trauma. Sometimes, those traumatic experiences involve interactions with government agencies. For example, people who have been involved with state child welfare have often been affected by trauma.

In these projects, we take a trauma-informed approach to research. In other words, we take people’s trauma into account, honor their experiences, and work to prevent causing additional harm. To do so, we empower participants to decide how they engage with us, and try to recognize and share our power as researchers. In order to understand why and when trauma might happen, at Bloom we take into account the broader history and context of the people we’re working with.

In the following posts, we’ll share some of our approaches to trauma-informed research. We hope to demonstrate the care this research requires, and show examples of its guiding principles.

Our approach to research

At Bloom, we take a collaborative approach to research and bring in participants to co-design solutions with us. Although we can’t erase the power dynamics between researcher and participant, we offer choices to participants and try to elevate their experiences.

We describe here approaches we have tried and adapted in US child welfare projects when conducting research with caregivers and former foster youth. We encourage researchers to think critically about how they might apply these tactics to their own projects.

Carefully and collaboratively define research goals and methods with participants

What it involves: At Bloom, this means being very clear on what we’re trying to learn and why. For a project working with former foster youth, we asked youth to weigh in on the common assumptions about the challenges of finding foster placements for teens, in an effort to bring in youth as experts on what successful placements would look like to them. If they wanted to share specific examples or stories from their life, they were welcome to, but we made it clear that it wasn’t required for their participation. This means trusting participants’ assessments instead of requiring proof, which can be retraumatizing.

Why we do it: In general, we avoid planning activities that require participants to retell their stories, when we don’t need this to answer our research questions. When we’re clear on the problem and project goals, we can consider methods beyond interviews, like workshops or activities, that provide a platform for participants to contribute to the design of our projects and possible solutions. Overall, we develop a research process that allows participants to bring their expertise and ideas to the table on their terms.

Before research sessions, share an agenda with participants, and give them an opportunity to review the topics

What it involves: We’ve found that it’s good practice to share an agenda in advance that describes how research sessions will run and the topics we will discuss. When we meet, we revisit the agenda and let participants know they can skip questions, or come back to an idea or thought they had later on. When we need to walk through written materials, we also ask participants how they best take in information and questions to account for different processing styles and needs. Do they want time to read to themselves? Prefer if materials are read aloud?

We also let them know they can take a break at any time. We are open to adapting in the moment to follow the participant’s lead and comfort level, rather than ensuring we make it through a list of questions. This means watching for body language, verbal cues, and responding to discomfort in empathetic ways.

Why we do it: We share agendas to help calm nerves, and give participants a chance to think in advance about what they feel comfortable sharing, or if they still want to join the session. At each step of the way, we try to offer participants more choices and power over what they share and how.

Revisit your findings with participants and adjust as needed

What it involves: We remind participants that we want to hear from them if new thoughts come to mind later, or if their answers changed. On some projects, after beginning synthesis we’ve come back to participants to review our findings, recommendations, and update our learnings accordingly. In the project where we worked on finding foster placements for teens, we invited youth who had already participated to a final workshop where we presented and facilitated discussion about what we learned. We also provided the option to participate through a Google form to provide feedback if they were unable to attend the session. Their feedback added new perspectives to our research. We heard back from youth that this helped them feel not just consulted, but that their voices were heard.

Why we do it: We revisit findings with participants not only because it can make our conclusions clearer, but because it gives participants another opportunity to be included in developing the findings and recommendations with us.

Share out participant memos

What it involves: When concluding a project, we review the research report and look for the 4–5 points that most reflect the intentions and concerns of participants. Then, we copy those into a separate document, and rewrite the findings and actionable recommendations in plain language (remove jargon, spell out acronyms, and add additional context). This is sent as an email with all the research participants on bcc. We thank the participants again for their help, introduce the attached memo, and invite participants to send their feedback.

Why we do it: We reflect back what was learned in a way that allows for participants to see that they were seen and heard.

Co-design and other methods of creating partnership with participants isn’t a catch all solution for making research projects trauma-informed. However, sharing knowledge and decision-making power in the research process, can support participants’ safety by offering choices and check-ins at multiple stages. We’ve found that centering participants allows us to share power, offer choices, and be accountable to the people central to our work.