Conducting Research on Taboo Health Issues: Advice from a Design Anthropologist

Written by Jenny Winfield and the R&D team at Zinc

“Taboos are hard to talk about and deeply connected to behaviours that are resistant to change”, says the Design Anthropologist Jenny Winfield. She is specialised in breaking the silence around taboo topics and working with underserved audiences, on the one hand because “there are so many taboo problems to solve with thoughtful design” and on the other hand, because this research — in being so difficult — is especially rewarding.

Jenny found her passion for talking and tackling taboo topics when she was working on a project funded by the Wellcome Trust to design solutions to the rising global health problem of antimicrobial resistance (AMR). The project was focused on understanding the overuse of antibiotics in Kenya and India, where she spoke with patients, pharmacists and doctors to find out the root cause of the problem. Initially, they were reluctant to open up, because medical misconduct is such a taboo. It took time, creativity and empathy to get to the heart of the issue.

She found that patients strongly associated a high quality of medical care with getting antibiotics prescribed — they felt that getting a prescription was what the doctor’s fee was ‘for’. Doctors felt backed into a corner by patient demands, as well as frustrated by the fact that many pharmacies routinely sell drugs without seeing prescriptions. Since the whole system seemed stacked against patients getting proper care, and doctors stood to lose out financially if they denied patients antibiotics (they threatened to switch doctors if they didn’t get what they wanted) sometimes doctors caved. Seeing the issue through the lens of doctors, pharmacists and patients made it clear that it was necessary to change the perceptions around what high-quality healthcare means to patients and add value to the idea of proper prescriptions.

From her 13 years of research experience, Jenny has learned a lot along the way and has kindly shared 8 tips for conducting researching on taboo topics:

1) Participants are the experts
People often underestimate the value of their stories, and the extent to which they are experts by experience. And since with taboos there’s a culture of silence, the idea that someone else might want to hear their thoughts feels strange. But in reality, no one knows the issues they are facing better than them. It’s important to reassure participants that their experiences and stories are essential in helping researchers understand the issue they’re focusing on. Jenny will say things like “I need your help to understand your world”, and also owns the weirdness around being a stranger to them. She’ll say “You don’t know me, and we’re going to talk about really personal stuff here, so I get that it’s a bit odd. But just know — there is absolutely no right or wrong way to answer here, so long as you’re sharing your truth”.

2) Invest in your recruitment
Jenny works with recruiters who understand this line of work, because it’s important to know and find the right participants, especially when dealing with a small sample size. A recent project around menopause, for example, led her to look for a range of women who had had better versus worse experiences, who had experienced it early versus late, and had it brought on artificially by cancer treatment. It is also important to actively recruit diverse participants, and to make sure you are understanding intersectionalities in the experiences that your users have. Recruiters come at a cost, but when there is a budget, Jenny recommends them — as finding the right people is at the heart of good research. Given the high dropout rates that can occur in research, particularly because in taboo research it can feel scary to take part, it is useful to over recruit and be flexible too (e.g. be prepared to reschedule when it suits them).

3) Humanise your language
Jenny is very considerate about the language she uses, not only during the conversation but also during recruitment. For example, she tends to use the term ‘research session’ rather than ‘interview’, which can sound intimidating — for example, bringing up the association with a job interview, where many of us can feel judged. In taboo research there is no room for being feeling judged — in fact she’s trying to overcome these exact judgements. Plain language conveys that you are also just a human interested in their perspective. “Let’s look at some ideas together” or “Let’s have a chat and see how we get on” is how Jenny sets a relaxed tone for the session.

4) Show radical empathy in the face of shame
Taboos can be laden with shame and it is incredibly important that we show that we want to learn the truth about feelings or behaviours that people feel are ‘wrong’. Jenny noticed that in her sessions, there often comes a single moment when participants start to reveal their truth, and usually when she’s asked a question about what makes their life or situation challenging. Instead of asking doctors, “why do you over prescribe antibiotics?”, she’d ask — “what makes being a doctor hard?” and they’d share that patients demand to be prescribed drugs, and threaten to switch doctors if they don’t leave with what they want. This way of asking often leads participants to open up about the issues that lead to taboo behaviours, and it’s important to help them feel safe and provide reassurance that you understand.

5) Lean into silences
We might be tempted to fill silences, because they can feel awkward and uncomfortable, but Jenny suggests the opposite. Let the participant know that you realise this is difficult to talk about, and that they should take their time and share in their own words. Often people have genuinely never spoken about their taboo issue in an open, frank way before, so they need generous amounts of time to find their feet. In Jenny’s experience, the best insights often come after a pause and where a participant begins saying “This might sound silly but…”. Jenny draws the analogy to the ‘doorknob phenomenon’ in healthcare visitors. When people have embarrassing things to ask for help with, they wait until they are basically on their way out with their hand on the doorknob to ask. When they’re about to lose the chance to seek help, that’s when the patients finally reveal the underlying concerns. The role of the researcher is to actively find and cultivate these moments of truth.

6) Share your ultimate goal
Often in commercial research, we don’t want to bias the participants by revealing too much about what the research is about (often the brand is withheld for example, to prevent it skewing people’s responses). In researching taboo topics, Jenny suggests that it is important to be upfront about the research goals with participants. Asking probing questions is a way to understand people’s experiences, and develop effective solutions — but people need to be properly informed if they’re going to dive into difficult and emotional topics with you. Ultimately, researchers need to put people at ease, and make sure that participants are comfortable in order to get the best results. Sharing the big picture of your research goal helps with that.

7) Look at something together
Often with sensitive research, participants feel uncomfortably visible and observed. As much as building rapport and eye contact is vital, Jenny has found that looking at physical artifacts together (e.g. photos, cards, a list of words) can help participants feel less ‘in the spotlight’. A year ago, Jenny was trying to figure out how she would conduct her sensitive research during the pandemic. Surprisingly, she found that people still talk openly online and in some ways she believes that the slight digital distance when interacting remotely and virtually can be beneficial: they are in the comfort of their own homes and you are not in their face per se. She still uses artifacts to put participants at ease, just that now her ideas, words or images are screens shared with the participants instead.

8) Self-care
Taboo topics are hard to open up about but often hard to hear about too. You cannot do this work without being an empath, and Jenny knows she must manage her own self-care intentionally. She limits the number of research sessions she has in one day, decompressing after particularly tough interviews, and taking breaks in between projects. Jenny ensures she has a colleague to join each interview to take notes but also to debrief together about the emotional side of interviews. She also knows the value of bringing lightness to this type of research — often participants will laugh as well as cry during sessions — and confidently exploring the full range of emotions at play is what makes this research effective.

A big question we at Zinc ask ourselves is how we can bring participants along on the research journey. When people generously share their insights and stories, we want the interaction to be mutually beneficial. Jenny makes the effort to follow up to show her participants what her research found or what has happened based on these sessions (e.g. a product development, or running campaign, or a report output). They are often quite keen to stay involved and hear about innovative solutions to the problems they’re facing.

Jenny has dedicated her work life to researching the stuff that people find it hard to talk about, such as cancer, drug addiction, bereavement, infertility, racism, debt and domestic violence, to name a few. This is where she feels she can really make an impact with design, and we hope these 8 tips for researching taboos will spark more awareness and help other researchers join her in tackling taboos.

At Zinc, we want to foster having difficult conversations in public discourse around taboo issues. In our event on the 5th May, we want to foster open dialogue about mental health in parents, an issue that has moved into the limelight during the many lockdowns, schools being closed and many parents having to juggle many spinning plates in the air. We hope to see you at our event: to sign up please register here.

If you’re interested in this, you may also be keen to find out more about Zinc’s next Venture Builder on a mission to ensure that every child and young person can develop and maintain good mental and emotional health — applications are now open. Join us in one of our Meet & Greet events to find out more.

If you want to connect with Jenny you can find her here: www.jennywinfield.co.uk (website) and @jennywinfield (Twitter)