How to Conduct Research on Sensitive Topics (8 Experts Weigh In)

User research strives to add context and foreground the "human" in products, services, and experiences. At People Nerds, we've described the importance of the means by which these practices are applied—covering practices for more ethical participant management, community centered research practices, and inclusive, equitable, community-informed design.

Here again we're relying on the expertise within the community of human-centered thinkers to source strategies and tactics for doing research "better": more inclusively, equitably, and fairly. These—as you'll read below—not only respect the humans who make our work possible, but create better outcomes for those folks (whether that's a more responsive service or a more useful product).

The practices reviewed below should not be interpreted as "for sensitive topics" only. These are best practices for creating mature, human-aligned experiences; they also work if that experience reflects a topic that is challenging, difficult, problematic, or otherwise hard to discuss.

Table of Contents:

1. Creating a safe space to build participant trust - by Rachel Carmen Ceasar
2. Applying grounded theory to ask for sensitive information - by Omar Mushtaq
3. Discussing taboo topics with younger participants - by YLabs' Design Team
4. Sharing personal stories through collages - by Kyle Soucy
5. Sensitive vs. non-sensitive research: A false binary - by Code for America’s Qualitative Team
6. Navigating sensitivity—from method choice to shareout - by Orly Sibony and Kate Carey
7. Letting participants lead - by Claire Crinion
8. Understanding stories as gifts - by Savannah Young

As part of the STOP COVID-19 California Alliance, our team’s goal is to document vaccine barriers in the Los Angeles community. One community that has been largely underserved and misrepresented in vaccine education and roll out efforts is the LGBTQIA community, particularly LGBTQIA communities of color.

In looking at why LGBTQIA communities have limited access to the COVID-19 vaccine, we also learned a lot about conducting research from a place of humility. This meant starting the research from a place of acknowledging historical and ongoing mistrust and violence in medical establishments, of which our team is part of and in many ways benefits from. Here we share three key takeaways and mistakes we made during the research process:

Give potential participants upfront all the nitty gritty of the study objectives, expectations, time commitments, and how their data will be used from now ‘til infinity. In the academic world, the bare minimum of this social contract is called “consent” where both the participant and researcher swear and sign by it.

In the private sector as well, laying out the ask and expectations upfront gives participants a chance to understand how their data will be shared and protected. For example, can I speak negatively about my boss and company during the focus group without it getting back to them? While having a social contract upfront doesn’t clear you from doing no harm during the research process (examples abound), it does at least outline the research relationship and ensure some basic protected measures for participants.

Who you recruit determines who will be listened to—and who will not. For our COVID-19 vaccine study, this meant recruiting at intersections of multiple marginalized identities of the Los Angeles LGBTQIA community. When we felt we had reached our “targeted participants'' for our focus groups, we stopped and asked ourselves, “Who have we not heard from yet?” and “Who are we continuing to exclude in this study and historically?” These were not just questions we stopped to ask each other during the recruitment process, but were part and parcel of our research design and methods from the start.

Logistically, this meant starting with an excel file of contacts put together by Damaris and Lindsay, who were already working closely with an established Community Advisory Board as part of ongoing studies between USC and the LGBTQIA community. We contacted everyone on the list and asked them if they could recommend other LGBTQIA service providers who might be interested in sharing their perspectives on vaccine barriers in their community. This is called snowball recruitment and while not super “scientific”—you’re recruiting friends of friends—it’s a nice way to get a warm introduction and recruit with the community. People who were already familiar with the different voices and politics operating within the different LGBTQIA orgs.

In one of our first focus groups, a participant prefaced multiple times that while they didn’t have a fancy degree or title, they had good knowledge on the barriers facing their LGBTQIA community. Damaris and I thought we had created a safe and welcoming environment through our careful introductions and icebreaker, but the participant’s placing of them (participants working on the ground) vs. us (researchers in the ivory tower) stuck with us. We knew we couldn’t change or window dress who we were to participants, but we could take stock of how we presented ourselves and acknowledge our privileged social position at an elite private university.

We were upfront about our positionality in one of two ways. First, we met before data collection and did an exercise on positionality I learned from my colleague, public health researcher and sociologist, Dr. Sabrina Smiley. From the article Dr. Smiley recommended, we filled out and shared our Social Identity Map to explicitly identify our social positions and reflect on how they impact the research process. COVID-19 had kept us from ever having met in person as a team, but the positionality mapping exercise helped us make our personal and professional challenges and strengths visible to one another.

We had acknowledged our social identities to ourselves, but as evident in that first focus group, we hadn’t acknowledged our positionality to the study participants. For our second focus group and every focus group after that, we found it helpful during introductions to share our positionality. In sharing who we were with the focus group upfront, we too felt vulnerable but also seen. We would also circle back at the end of the focus group to ask participants how in our position as USC researchers could best support and disseminate what we learned in the focus groups.

Oftentimes, qualitative researchers must balance their ability to generate data with their ability to protect their participants by being aware and sensitive to their experiences. There are frameworks that have laid the groundwork of helping researchers be sensitive in their research approach. To address sensitivity in qualitative research, it is important to first discuss the important distinction between “method” and “methodology.”

According to UX researcher, Kathryn Brookshier, the research “method” is essentially the tool one uses to study phenomena (interviews, usability studies, diary studies, etc.). The methodology is, in Brookshier’s words, a “rationale for the research approach.” To take that definition a step further, the rationale for methods is the framework that guides how methods are applied in qualitative research. According to Creswell, there are five main methodologies: grounded theory, phenomenology, ethnography, narrative analysis, and case study. Below I’ll walk through how grounded theory can be applied to address sensitive issues in qualitative research.

Grounded theory is a methodology that was developed within the sociological tradition by Barry Glaser and Anselm Strauss. Since its inception, many other thinkers have developed other iterations of the methodology. Glaser and Strauss hold that we can study the social world with the assumption that the researcher should allow the world to present itself without applying their individual perspective. Because it is a methodology, this provides details on how to develop the sample (with issues like sample size and types of sampling), the method itself (e.g. interview, diary studies, etc.), the data analysis, and, for this piece, the data collection itself. From a grounded theory perspective, the respondents drive the data collection and this insight can help address sensitive topics.

When examining the best practices for researching sensitive topics, grounded theory provides insights into how a researcher can address these topics. For example, let’s hold the following assumptions: the researchers have selected interview methods, they have clarified the study’s purpose to the participant and addressed ethical concerns with informed consent, and the researchers are trying to get information about a respondent’s recent diagnosis of chronic illness and their sensitive subject (e.g. their sexual behaviors).

Based on these assumptions, researchers can then shape the interview to allow the respondent to divulge relevant information. For example, rather than directly asking, “What is it like having sex with this illness?” a researcher could ask the respondent about their lives prior to and post-diagnosis. Then if the respondent mentions their sexual behaviors, the researcher can say, “Well you just mentioned that your sexuality was impacted. Can you please talk about it?” The researcher allows the respondent to guide the data collection and can elicit a rich description. This way researchers themselves are not the ones raising the topic, but the respondent drives the conversation. Additionally because the respondent mentions the sensitive topic, they at least have some comfortability with the sensitive topic in question.

The example assumes that the researcher is fortunate enough to hear the desired construct, but when this does not readily occur, including a semi-structured design would help prompt the specific conversation. Examining the same question, if the participant explains their lives pre-diagnosis and post-diagnosis, but does not bring up the sensitive issue, the researcher can probe by asking, “So you mentioned x, y, and z, but can you also speak to how this illness impacted your sexuality?” This way the researcher acknowledges the importance of the motivations of the respondents (building rapport), but the simple probe can allow for the researcher to shift the conversation into their desired direction. In this example, the researcher still allows the respondent to explain their version of reality, but by including a probe, the respondent is free to provide their perspective without the interference of the researcher. Thus, when the respondent drives data collection, researchers can raise sensitive topics while building rapport and generating insight.

Grounded theory assumes that the researcher is a blank slate and that the respondents drive data collection. Applying this framework, researchers can parlay information provided by respondents into eliciting more depth either when this information is offered readily or not. This has implications for being able to study multiple subjects such as: health, identity issues, sexuality, substance abuse, and other seemingly taboo behaviors.

Most of our work at YLabs is on sensitive or taboo topics and we’ve developed methods around doing this carefully. We also get formal research ethics approval for all of our research with a stringent policy around participant consent, safeguarding, and use of images.

When working with younger participants, it is important to create a safe space. This includes finding a location that is comfortable for them (which may be different than what’s comfortable for you) as well as letting them know it is okay to leave if they feel the need to do so.

Below are a few ways to frame and approach taboo topics with younger participants.

(Excerpt is pulled from Ylab’s piece: How to explore taboo topics with young people during design research).

Discover more principles for designing products & services around taboo topics.

I've found the collaging method to be very effective when trying to talk with people about highly sensitive topics. A lot of my clients are in the pharmaceutical and medical industries, so I've had to interview people about somewhat personal topics (menstrual cycles, chronic pain, depression, etc).

Using the collaging method, participants seem to open up much more easily to discuss these topics in a way that's more comfortable for them. Rather than sitting down with a clipboard and asking the participant intimate questions, they're choosing to tell their story through a collage and I'm always amazed by the outcome.

Some background on collaging (An excerpt from my article Collaging: Getting Answers To The Questions You Don’t Know To Ask):

To learn more about collaging, read the piece I wrote for Smashing Magazine in full, or check out a workshop I led with Women Talk Design.

What’s sensitive for one person, may not be sensitive for another. Regardless of the sensitivity of a subject, practices for conducting good research are universal. The team at Code for America walks us through their practices from recruiting to sharing research and how to structure your research with the participant at the helm.

Offer as much context and information up-front as you can. We strive to clarify what the research hopes to create, do, and learn in the screening/research calls. This context and background offers clarity to potential participants about what our intentions are, before answering a single question. Even after setting up an interview session, we check again with the person to ask if they have clarifying questions and offer background on what the session will discuss, how long it will last, and restate their autonomy in skipping questions, taking their time while answering, or even concluding the session if it's not feeling right.

We're careful not to delve into overly personal aspects of the participant’s life but rather focus on their specific relationships, attitudes, or context around the project or program we're building. This way, they don't feel spotlighted and the space for would-be judgement (where it does not belong: in a session) is reduced. We're also cognizant of the labor that comes with asking these questions, and check in with one another to ensure CfA researchers are not experiencing vicarious trauma by leading a research session. Ensuring the safety of everyone involved in the research is a bi-directional process, caring for both participants and the people conducting the research.

An important practice for us involves compensation: We both always offer compensation for our work and always pay participants up-front, before the research commences.

This way, folks don't feel forced or coerced to complete a research session. It helps to build trust and move the work from how historically researchers have done research: transactional ("answer my questions") to transforming harm and giving power to participants: cooperative ("share your expertise and show me how it’s done").

We are very collaborative and reflexive when programming our designs. We like to get different perspectives on the questions, guides, calls, and surveys. That way, if we've not phrased, framed, or defined something clearly it can be flagged. More important still is the question: "Do we need to conduct this research?” question. We use that a lot. It helps us respect the participants' time and creates a tight, aligned-to-our-outcomes design. One way to do this is to ask questions like: "How might a person answer this?", "What would we do with that data or answer?", and “Does what we’re looking to find out already exist somewhere else?"

Similarly, we are thoughtful with collecting and reporting demographic data. When and why is it important (or even necessary) to share demographic info, when a quote itself might carry the weight of the insight alone. When creating closed-ended questions, we're critical of the response options, ensuring they're exhaustive, inclusive, and allow for write-in options if an experience isn't captured. We've been expanding categories for questions around self-identification, too, which offers a window into trends about the folks we're serving (e.g., gender, ethinic, or community identity). Our goal is to expand access, and staying flexible with response options helps us work toward that goal. With open-ended questions, we actively listen to see if someone’s responses are moving into areas that are outside of the scope of the research or are risking retraumatization. When that happens, we will work to reorient the interview or offer our participant an opportunity to pause and recenter themselves through breathing. In some cases we may even stop the interview for everyone’s protection.

There are also times when we bring in community members as experts, and ask them to weigh in on designs. This has a number of effects for us: 1) It creates a space for a longer relationship as opposed to a transactional and instrumental one; 2) The research is better when vetted by a community expert, we learn from them how they interpret, understand, and make sense of the topics we're curious about; 3) It facilitates better sessions, as we will sometimes train community experts in interview or session-leading methods, which invites honesty and expertise from more folks.

For our team, this idea that there's "sensitive" and "non-sensitive" research is a false binary. Yes, there is research that includes PII, involves health or financial information, but the practices we've outlined are just good research and should be applied to any study. We should never assume a subject will or will not be interpreted as "sensitive" to folks—that's a subject position we could never take or have. Instead, we recognize that doing research now, especially after the events of 2020, has more potential to surface trauma, both for researchers and folks who participate.

When we present our recommendations and findings, we strive for strengths-based affirming language so as to not rob participants of their agency. Because much of our work is open-ended, we don't want to give "empathy tours," wherein the emotional and affective experience of our participants becomes something we show, static and without context, to motivate. Yes, there are times when the emotional expression is useful to improve or make an experience better, but we're always reflecting on how we're presenting the responses and expert feedback: Are we sharing these expressions with purpose, linking it to an improvement outcome? Or are we just sharing to share? We try and avoid the latter.

Matt and his team suggested the following resources for learning more:

• Chicago Beyond's "Why Am I Always Being Researched?" guidebook
• Code for America's Qualitative Practice Guide
• Rachael Dietkus & Sarah Fathallah's work on Trauma-Informed Design
• Aditi Joshi's writing on conducting research with a Healing Mindset
• Matt Bernius' living resource guide on Civic Tech & Qual Research

NerdWallet provides information, recommendations, and tools for a variety of personal finance topics, from finding the best credit card, to improving your credit score and learning how to buy a home, and more. As UX Researchers at NerdWallet, it’s our job to identify and understand the problems our users face with their personal finances, so that we can build better solutions as a company.

As part of our research, we talk to users about a variety of financial topics, to learn about their personal financial situations and goals. Not everyone feels comfortable talking about personal finance. They may not want to share hard numbers (like household income or credit score), admit that they’ve made unwise financial choices, or reveal that they’ve made great investments. Therefore, we take steps to be conscious of how we’re asking people for this type of information, and make them feel at ease sharing it with us.

Rather than try to determine if a financial topic might be sensitive, we assume it could be sensitive to any of our target segments that we recruit for. So we make it clear to potential participants that we’ll be talking about personal finance. If they don’t want to talk about that topic, then they have the option to opt out. At the beginning of interviews, we also tell participants they can let us know if they don’t want to talk about a certain topic or answer a certain question, and we’ll just move on.

1. Recruiting and prepping:
   1. In our screeners, we make it clear to potential participants that we’ll be talking about personal finance. If they don’t feel comfortable talking about it, they can opt out.
   2. For moderated interviews: We let participants know ahead of time what the session will be about, and general topics that will be covered (e.g., “in this research, we’re going to talk in detail about how you decided to refinance your mortgage”). If they don’t feel comfortable talking about those topics, they can opt out.
   3. For one ongoing study that we do to build empathy with our target users (which involves diving into several personal financial stories), we ask the participants a few questions ahead of the session, to get them thinking about the topic and get them comfortable sharing information, such as how they make financial decisions.
2. Introducing the research (no matter the method):
   1. We always tell participants in the beginning of a session that we won’t ask them for hard numbers (like household income or credit score).
      
   2. If we’ll need participants to share their screen, we’ll give them a moment to remove anything sensitive.
   3. If our research does involve using specific numbers (like entering numbers into a calculator, or a quiz flow), we ask users to enter fake information. We don’t want them to feel obligated to share their savings numbers or the amount they spend on credit cards with a stranger.
3. Building rapport in moderated sessions:
   1. Once we begin a moderated session, we start by outlining the topics we’ll be covering together (e.g., “today we’re going to learn more, in detail, about how you chose your last credit card, and then get your feedback on some new ideas”). We also make sure they know they can request to move on from a topic at any time, if they feel uncomfortable.
      
   2. We ask the participant to introduce themselves. We start with general questions (“what do you do for fun?”) and get more specific to the topic at hand (“tell me about the last time you did _____?”) as we build rapport and progress through the interview. Building rapport is really the key part.

We wouldn’t use a survey or unmoderated research to gather really personal, in-depth stories on sensitive financial topics. If we need to hear these types of stories, we lean toward moderated research, to build rapport and coax out the details of the story. We’d feel less confident that we could get that story in detail through unmoderated research, or a survey.

Any general advice about building rapport with participants becomes really important here. Things like building rapport, making the interview seem conversational, showing that you’re actively listening and not distracted or interrupting. Building good rapport with a participant helps them open up around these topics.

Participants may be hesitant to share when they don’t know how their information will be used. We make sure to reassure the participant at the beginning of an interview that everything done for the purpose of research (videos, notes, etc) is kept confidential and will not be shared outside of the company.

We always close out our research (no matter what the method!) with “thank you so much, this has been really helpful!” We want the participant to feel that sharing this sensitive information was worthwhile.

Finally, don’t assume that a participant will think of a subject as sensitive. Some participants tell us they love to talk about their finances. When we hear that, we just roll with it!

We have a number of practices for sharing out our research, given the sensitive topics we cover:

• In reports, we blur screens if participants do share information like balances
• We are very protective of our participant videos, and only share sessions with immediate team members and stakeholders in a controlled way
• Finally, we try to use direct quotes and the participants’ own language as much as possible in our share-outs, to ensure that our own biases may not accidentally creep in, and paint their sensitive situation in a different light.

As a researcher at Affirm, a lot of my work is doing research about people’s personal finances & financial decision making, which can be a delicate and emotional topic. Here are some practices that inform how I approach this work:

Acknowledge the subject matter & its sensitivity as part of the recruitment outreach. This makes sure it doesn’t come as a surprise and gives participants time to prepare mentally to share about their experience. It also gives you a chance to set expectations for the interaction and make upfront commitments about how it will be treated with care.

It’s worthwhile to connect with the participant beyond small talk. Take the time to learn a bit about who they are as a human before diving into the meat of your subject matter. You can ease into a more sensitive topic by first talking about related topics that are less sensitive and feel lower-stakes for the participant. Finances are a broad topic that touches most aspects of someone’s life, so I spend considerable time at the start of each session letting a participant share whatever about their life feels important. This can end up being anything from their work, to a major life event. It’s not about checking off a list but rather, making a connection. I’ve been surprised by how vulnerable people will get without any prompting if they are feeling comfortable.

At the beginning of a research session, let participants know they can take breaks or not respond to questions. Don’t feel tied to a rigid set of questions and instead make space for the participant to direct where the conversation goes. It can be tempting to redirect someone back to your questions if they seem to be on a tangent, but allowing them to share their experience in the way that makes sense to them gives them more control & autonomy.

When discussing taboo topics it’s especially easy to unconsciously use language that reflects your personal or cultural worldview, because you might feel nervous and may not have discussed the topic much with people with different perspectives from you, or at all. This can affect the participant’s experience as well as the quality of your research, since it can impact how deeply you’re able to learn about perspectives and approaches that are unlike your own. As an example, when I started in the finance space I had to learn how varied & complex relationships with debt are. Previously, I might have asked a question like “Why didn’t you pay off the loan once you had the money to?” based on my own judgement of what debt is. Now I would phrase this in a more neutral way.

You can’t always know all of your unconscious biases, but you can mitigate this by being aware and actively working on it. As you’re planning research on a sensitive topic, go through your questions and identify personal assumptions, especially assumptions that involve value judgements. You can also practice in advance how to talk appropriately about a delicate subject that may come up during a research project. Finally, If you catch yourself asking a question that feels potentially biased by your perspective, don’t be afraid to correct yourself and reframe it as an open-ended probe.

Sometimes it can be helpful to explain why you’d like to understand a specific aspect of their experience. It might be clear to you why that topic would be helpful for your research, but not necessarily to the participant.

For example, an understanding of someone’s family structure is very useful context for their whole financial picture because it changes their priorities, what they spend money on and who they’re supporting financially. But it isn't always obvious to participants why I'm asking about their family structure in an interview about their financial behavior. I've found that when I explain my reason for asking these questions, it allows the participant to get more comfortable with it. People appreciate getting to learn about the research process. As a bonus, it sometimes leads to participants sharing something relevant that I wouldn’t have known to ask about.

Don’t press on a sensitive topic if someone isn’t clearly consenting to talk about it. Understand that because of the researcher-participant dynamic, someone may not feel comfortable telling you explicitly that they don’t want to discuss something. Make sure you’re paying attention to nonverbal signals like hesitation, facial expressions, or shorter answers. When you notice these things, let go of the need to get every question fully answered and instead be ready to respond appropriately by giving space, moving onto a different topic or wrapping up.

For the past 10 years as a researcher, I have strongly identified as an interloper. In fact, in one of my earliest academic papers, I call out this identity in the title. I’ve always felt like someone who doesn’t necessarily understand what others are going through. It is because of this insecurity that - looking back on my professional career - I have been drawn to opportunities to dig deep into questions around sensitive subjects with vulnerable populations.

My experiences have ranged from painfully awkward to emotionally healing. I have interviewed:

• Israeli MDs in hospitals who shouted at me for giving a voice to their Syrian refugee patients
• An HIV positive homeless man with mental illness, who spent more than half of our visit showing me the elaborate plans he makes for international vacations with his friends
• Refugee families from Burma who fed me from their tables, prayed for me, and told me stories of their unimaginable suffering, torture, and loss
• Patients with chronic illnesses who spend part of each day of their lives visiting their clinic for ongoing treatments
• Undocumented families in Miami, who opened their home to me but would not share their last names
• Customers with financial fragility, who were disproportionately negatively affected by job loss when effects of the Covid-19 pandemic struck our country

I want to share a few things that I have learned are helpful as part of a research practice with sensitive subjects and/or vulnerable populations.

As I mentioned above, I’m a total interloper. As a researcher, it has been helpful for my rapport building with participants to assure them that I do not understand their experience. I totally do not ‘get it’ and I am there to learn from them. Consider positioning yourself as someone who does not share their experience, even if you think you can relate or sympathize. Allow them to really describe their feelings and lives to you in complete detail. Not only does this empower your participants, but it provides helpful context and depth to your research.

Sensitive subjects are deeply personal. Personal finances, health, torture, suffering–these are not discussions we have with our closest relatives, let alone a total stranger who wants to put your life under a microscope. Understand that as researchers, we are asking a lot of our participants, and we must enter the space with complete humility and gratitude. Whatever they choose to disclose is a gift. They are leaving part of their story with us, and we have a responsibility to treat it with dignity and care.

One of the hardest things about research on sensitive subjects is the fact that they are tricky to talk about. Shame, embarrassment, insecurity, pain, guilt, and sadness can all strike your participants throughout an interview as you ask them personal questions. In such circumstances, it has been helpful to me to listen closely to participants and keenly read their emotions. If they maintain eye contact as while describing something, do not break it. If they become emotional, you may become emotional as well. Navigate through the questionnaire with grace and complete familiarity–try not to break the rapport by flipping through pages. Remember, in the context of the setting with a participant, you are a listening ear first and a researcher second.

The questions we have as researchers are hard, but if we do not ask them, who will? Now, it is always important to read the room, and never sacrifice the dignity of the participant for the sake of a reaction. However, in my experience I have learned that 99% of the time, participants do not mind answering almost any question. The rapport must be built, the timing must be right, and the question must come from a place of humility. But, you only have one chance to ask each person those difficult questions. The worst that can happen is they say, “I do not want to talk about that anymore.” By the way, this has happened to me multiple times, but it never ruins the interview. Simply respect their wishes and move on.

In many of my projects, I have relied on cultural gatekeepers to review my notes, themes, and synthesized conclusions. I am an interloper, sometimes I do not quite process conversations the way the participant may have intended. Cultural gatekeepers not only introduce us to our participants in some cases, but they can also help us process what we are hearing in research. Whether it be for a refugee culture or financially struggling insurance customers, it is important that we share our process with trusted advisors–even if that means returning to participants, themselves, to be sure we have interpreted the work in a way that represents their story respectfully and truthfully.

There is nothing more terrifying than a looming deadline, I completely get it. As you plan your research, give yourself enough time to process the data you collect. Name your participants (even if it’s a pseudonym) and print out their faces, tape them to your workspace. Give them space in your mind throughout the project–from beginning to end. They are the most important asset to your research, and their stories deserve to be top of mind for you as you process the data and synthesize your findings.

You are in this privileged position for a reason. You likely have worked very hard to be where you are today. The research we do, especially with sensitive topics and vulnerable populations, is incredibly taxing and emotional. It is also incredibly rare and such a gift. My own practice includes a reflection on gratitude for being able to ask hard questions, listen to rare stories, and grow closer to the human heart with every project.