Summary
Qualitative interviews use open ended questions to prompt participants to share their lived experiences, stories, understandings, emotions, and so on. Questions are usually focussed on issues that are difficult to quantify, like social challenges, relationship dynamics, and everyday experiences of living with TB. In a recent consultation with TB experts who bring lived experience—Oxana Rucsineanu (Moldova), Tenzin Kunor (USA), Saurabh Rane (India), and Phumeza Tisile (South Africa)—we explored what meaningful qualitative interviews with people affected by TB should look like, and where researchers often go wrong. We invite you to learn from these experts themselves and carry their advice into your next research project.
General DOs and DON’TS of Qualitative Interviews with People with TB
Respect and mindfulness should be at the forefront of every interaction. Interviews should feel candid, honest, and genuine, not forced. Participants should always be reminded that they are free to share only what they feel comfortable sharing and that there are no “right” or “wrong” answers.
Use clear, plain language. Medical terms and abbreviations that are common to researchers may not be understood by participants. Not only that, cultural and religious contexts influence how people interpret questions. The wording of questions should be relevant and acceptable within that research setting, and always as simple as possible. Support from local translators and other knowledge-holders should be sought to translate questions, ensure questions will be interpreted in ways the research team intends, and pose alternatives that may be more meaningful to the community. (More on this ahead.)
Participants should always feel comfortable and welcomed to share questions or concerns at any point of their interview. Researchers should listen closely; oftentimes, participants’ answers may hint at what topics or questions need more probing. Allow participants to guide the conversation rather than interrupting or rushing them. When it comes to those who are living with TB, it is best to explain why the interviewer is wearing the mask (which usually looks different from the one worn by participant), and make sure that they are comfortable with this.
Sometimes interviews work better in segments, rather than one long discussion. Splitting interviews into smaller rounds of conversations may be more feasible for people with TB, while allowing trust and familiarity to build between the researcher and participant. The option to redo interviews should be available if participants wish to retract what was said.
Be mindful of the current state of wellbeing and stage of recovery of participants. Questions posed to a TB survivor should be necessarily different compared to questions undergoing treatment.
Be aware of your own position as a TB researcher. Like all people, we have assumptions, prejudices, biases, and our own understanding of the world. Expect that you may not completely understand what a patient tells you.
“Be curious and be present, this person is uniquely having their own experience” – Tenzin Kunor
Just as important, do not interrupt a participant. Interrupting participants multiple times may discourage them from sharing. It is important to give participants the time to speak, even if their pace is different from the researcher’s. Appreciate silence!
Do not speak down to participants either, staying mindful of one’s tone. A topic or question that may seem like common sense to researchers, may be completely foreign to participants. Appreciate that likewise, topics that are common sense to participants, are commonly omitted by researchers. Participants are not just research subjects. Respond with compassion and a willingness to learn not teach. The best interviews are conversational in tone, laced with humility and empathy.
“They are a human, talk to them like they are a human” – Saurabh Rane
Consent and Ethics
True informed consent is attentive to time and simplicity. Consent is often executed quickly to secure a signature. This leaves room for misunderstanding and error. Instead, consent should be explained patiently and as simply as possible. Researchers should be prepared to spend time on consent, potentially as much as the interview itself. Explain each piece of what a participant is agreeing to, including recording. Help them understand that the researcher may require outside assistance from local translators, if language barriers exist. True informed consent helps to build meaningful and trustful relationships.
Consent should also be thought about flexibly, not as a fixed permanent decision. It is possible that participants want to retract their statements in the middle of an interview or even years later. In the consent form, adding a time indication for how long the information that is collected will continue to be used and how it will be shared, is a potential strategy. Patients should also be aware of their right to withdraw or renounce their initial consent.
Relevant and Meaningful Qualitative Research
Qualitative research has the potential to explore a wide variety of topics in TB, especially topics that are often missed or overlooked when patients are dealing with diagnosis, undergoing treatment, or recovering. This means the questions that are asked of patients need to be relevant and meaningful to the participant themself. Patients have busy lives or may be uninterested to participate. However, if they can clearly see where their contribution will go and how it will make a difference in their own lives and others’ lives, they may be more inclined to join. It may be worthwhile to discuss with patients how qualitative interviews add meaning beyond numbers.
“Patients want to know how their contribution is going to affect their cause” – Saurabh Rane
There are many topics around which qualitative interviews can be designed, that are meaningful to people with TB, such as but not limited to the impact of stigma on mental health, challenges of navigating stigmatized experiences (not just health experiences), factors influencing quality of life for patients and survivors, and key considerations for strengthening support systems for individuals affected by TB.
One major topic that is often overlooked is “Life after TB”. People may feel unequipped or unprepared to handle long term disabilities, lung issues, financial issues, and stigma. Researchers can focus on this topic in future studies.
“People, at least within our community, don’t feel like they have enough information. Even with their healthcare providers, they don’t necessarily get the best guidance and care. So that’s also something people often want to speak about and learn more about” – Tenzin Kunor
Compensation and Continuous Engagement
Compensation will look very different depending on the context. A food package, a market voucher, money, and even shared authorship are just a few examples. Compensation will depend on where people come from, their individual needs and values, how big the research project is, and how many individuals are interviewed. But compensation should always be reasonable.
“We need to compensate people for their time, for opening their stories, for sharing their feelings” – Oxana Rucsineanu
Engaging participants beyond the interview stage is important. At minimum, this should include the dissemination of research results. Further steps could involve inviting participants to organized meetings to share results and inviting their direct input. Creating opportunities for participants to contribute to the interpretation of the data, where possible, and authorship for those who may be researchers themselves, are additional ways to build meaningful and continuous engagement.
Keeping participants engaged throughout and beyond the research process can foster strong relationships between the research community and TB-affected community. In some situations, staying in touch with participants after the research is over is an extra step that can mean a lot to people affected by TB; check in with them every few months to see how they are doing and invite them to future TB events or research studies, if they are interested.
Unintended Consequences of Qualitative Interviews
Interviews can bring up difficult emotions. Researchers should be prepared to pause or stop the conversation entirely if a participant becomes distressed. No one should ever feel pressured to continue.
“Pause the recording and let them know that it is okay, so that they feel respected and that they have a choice. Offer a beverage and ask them if they want to continue or talk about something else, do not probe unless they bring it up.” – Phumeza Tisile
Most important, don’t offer support or make promises that cannot be kept. Check in throughout the interview to make sure they are still okay to continue. If the tone feels “off” or if the conversation is getting derailed, it may be best to try another time.
“It’s natural for people not to be willing to respond to all the questions, and we cannot force it. Just try the next time with the same person, but again, it’s not necessarily going to work. That’s something which is, you know, dealing with people.” – Oxana Rucsineanu
Plan for referral pathways for those who express emotional distress. Make sure there is help available but only make the referral if the participant wants to. Always respect the participant’s choice.
Oxana Rucsineanu leads “SMIT” or the Society of Moldova against Tuberculosis, Moldova.
Tenzin Kunoor supports the global policy portfolio at RESULTS, USA.
Saurabh Rane is a fellow at Survivors Against TB, India.
Phumeza Tisile is an advocacy and research officer at TB Proof, South Africa.
Oxana, Tenzin, Saurabh, and Phumeza actively advise a number of community policy and research platforms, and continue to provide counselling and support to persons directly affected by TB.
Hanna Lum-Gerry, an undergraduate student in the BSc in Global Health Specialized Honours program at York University, Canada, facilitated the interview.
Yuliya, PhD candidate in Social Anthropology at York University, Canada, supported the process.
