Interviewing people on sensitive topics: challenges and strategies

Abstract

Interviewing participants on sensitive topics is challenging and requires carefully planned and executed strategies throughout the research process. Sensitive topics have the potential to cause distress to participants or researchers. In this methods paper, strategies for conducting interviews on sensitive topics are described, including choosing the appropriate interview approach, creating a safe and comfortable environment, building rapport, utilizing sensitive and open questioning, reflexivity of the researcher, and awareness of the potential therapeutic effect of the interviews on participants. The strategies are illustrated with experiences from research on sensitive topics.

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Introduction

Research on the effects of cardiovascular illness and treatment decisions, behaviour change, and the role of patients and nurses in the process of care can be perceived as sensitive and can elicit distress.

Sensitive topics are defined as topics having the potential to cause physical or psychological distress to participants or the researcher, such as sadness, anger, anxiety, and fear.^1,2 When sensitive topics are being studied, researchers must take measures to ensure confidentiality and privacy and incorporate strategies at all stages of the research process to deal with the challenges of researching sensitive topics.³

Potentially the most suitable approach for studying sensitive topics is using a qualitative disign.⁴ Interviewing participants to collect rich and meaningful data while making participants feel invited, safe, and comfortable to share their perceptions or experiences with a sensitive topic with a stranger requires certain skills of researchers.⁵ In this methods paper, we aim to guide researchers in conducting interviews on sensitive topics. We describe how to identify a sensitive topic, reflect on the methodological and practical decisions to be made during the entire research process from recruitment to data collection and analysis to the report, see Table 1. We describe the potential challenges, strategies, and ethical considerations involved and how to reflect on your role as a researcher when interviewing participants on sensitive topics. We illustrate our findings with our experiences with research on sensitive topics.

Overview of the methodology

Interviewing participants on sensitive topics in the research process

Identifying a sensitive topic

Sensitive topics include a wide range of topics, such as mental health issues, behaviour that evokes risk and shame, substance abuse, sexuality, end-of-life decisions, bereavement, death and grief, and cultural or religious beliefs. The extent to which a topic is perceived sensitive depends on the extent to which a topic causes distress to the participant and researcher and might vary by cultural or age group. Certain topics evoke emotional responses such as sadness, anger, anxiety, and fear and can even harm participants.³ Factors may also be related to personal values, ideas, and experience with the topic, possibly evoking distressing emotions.

Researchers may feel hesitant to talk about potentially sensitive topics in an interview setting and turn to using questionnaires instead, which may limit the depth of knowledge on certain topics. Identifying and anticipating on sensitive topics is not always easy and straightforward because individuals’ perceptions of what is sensitive may depend on the interpretation and/or distress caused by the topic. However, filling in feelings on the sensitivity of a topic for another person and/or projecting one’s feelings should be avoided at all times. For example, interviewing patients with heart failure about frailty or sexuality may be sensitive to one patient and/or researcher, while others may not perceive these topics as sensitive. This sometimes makes a sensitive topic difficult to identify.

Study preparation and planning

Participants should be confident that researchers are providing high-quality ethical and methodological work. Therefore, any researcher designing research studies on sensitive topics using interviews should have extensive training and experience in conducting qualitative research, including methods and interpretation. Prior to conducting interviews on a sensitive topic, researchers should determine if they are qualified and experienced to conduct the proposed research and consult with experienced qualitative researchers as needed. Researchers should also assess the sensitivity of the topic and their own experience and resilience.⁶

Research on sensitive topics may require the use of less conventional methodological approaches, such as the use of participatory or inclusive strategies. Involving patient research partners or eligible participants in the design and objective of the study can help understand participants’ resilience rather than their sensitivity.⁷ Involving patient research partners or eligible participants can also help in finding the right tone and words for the interviews.

Careful and flexible planning of the data collection is needed to conduct interviews at a time and location which are suitable for the participant; this could also be outside normal business hours. Researchers should also keep in mind that, in case of anxiety or worries, they should take time to provide emotional support during or immediately after the interview. Moreover, reflection and processing time are needed to face the challenges and deal with what the sensitive topic may evoke in the researchers themselves.⁶

Recruitment

When recruiting participants for interviews on a sensitive topic, it is important to consider convenience sampling, such as purposive sampling, e.g. through an open call (advertisement) or snowball sampling. It may be difficult to find persons who have experience with the sensitive topic or/and who are willing and able to talk about it. Usually, researchers work with gatekeepers to gain access and recruit participants. Gatekeeping is the process by which researchers gain access to a research setting and/or participants in that setting.^8,9 As a researcher, it is vital to carefully prepare the recruitment strategy to involve gatekeepers to gain access to participants. Engaging gatekeepers can be challenging as gatekeepers can overprotect eligible participants and do not want to burden them and/or feel uncomfortable or inappropriate to introduce the study on a sensitive topic. This may exclude and silence eligible participants without hearing their voices and may bias the sample.^8,9 It is useful to gain access to organizations and gatekeepers prior to data collection and discuss their perceptions about the topic and their needs to inform eligible participants about the study. We experienced that it is helpful to meet face-to-face with gatekeepers and discuss their perceptions, answer questions, clarify aspects of the study, and discuss how to meet their needs openly and transparently. For example, if a gatekeeper feels uncomfortable introducing the topic, it might be helpful to create a script they can use to find the right tone and words. If a gatekeeper denies eligible participants access because they are too vulnerable, this may be disappointing, but this decision should be respected.

Another issue to consider in recruitment is self-enrolment. Perhaps participants who have rich information are least likely to enrol themselves, especially if there are potential consequences or implications either directly for the study participants or for the individuals represented by the study.¹⁰ For example, a study of medication non-adherence in patients on a transplant waiting list may have major implications for an individual being interviewed. Other ways to optimize recruitment are using trusted sources (e.g. university or hospital logo, tokens of appreciation), ease of participation, or social media recruitment. In an ongoing study on sexuality in patients with a left ventricular assist device (LVAD), we experienced that recruiting patients for interviews through social media can be very helpful. Patients often have online peer groups, for example, on Facebook, where they share experiences and support each other. Being invited and introduced to such a group as a researcher can help you connect with patients through peers.

Participant information

Participant information about the study and informed consent should clearly indicate the aim of the study, how data will be collected and handled (anonymization or pseudonymization) and the potential risks of participation. We learned that openness and transparency about the topic of the study, mentioning wanting to learn from participants to improve care, emphasizing their free choice to participate without consequences for their treatment, and normalizing their hesitation to participate can enhance participants’ willingness to participate. We recommend involving patient research partners or eligible participants in the development of participant information to help find the right tone and words.

Data collection

Face-to-face vs. other interview methods

Face-to-face interviews can simulate normal conversation in which interpersonal contact helps to discover the participant’s feelings, thoughts, and perceptions, builds trust and rapport, and allows observation of and response to non-verbal communication.¹¹ We prefer physical face-to-face interviews on sensitive topics because we have learned that such interview helps create a safe and comfortable atmosphere and makes it easier to respond to distressful emotions evoked during or immediately after the interview. Collecting data by phone, video, online chat, or email are options to consider with sensitive topics, which allows for anonymity, lowers the barrier to participation, and allows participants who live at a distance to participate.¹² Although these methods have their own challenges, including technological issues, confidentiality, verification, and security, the advantages can make them viable alternatives when researching sensitive topics.³ In our experience, participants can indicate well which approach of interviewing they prefer by allowing them to choose between different methods.

In some cases, such as when participants feel vulnerable and an interview of 45–60 min is too long to sustain, it is worth considering scheduling several short interviews instead of one long interview to enhance data quality.¹³

Creating a safe and comfortable environment

Participants should feel safe and comfortable during interviews,³ and interruptions should be kept to a minimum. Using a flexible interview guide and knowing the interview guide well make it easier to jump between topics when the participant seems ready to discuss or elaborate on a topic.¹⁴

We experienced that for most participants, their home feels safe to participate in an interview and gives them a sense of control. However, some participants may feel overwhelmed to allow researchers access to their private homes and the fact they cannot walk away from an interview when they want to. It is recommended to allow participants to choose the location they prefer and offer multiple options, such as the participants’ home, hospital, community centre, telephone, or video.

Building rapport with participants

Mutual trust between the researcher and participant requires rapport building and is paramount to obtaining truthful and rich qualitative data. From the first contact with a potential participant, researchers need to empathize with the participant, put themselves in the participant’s perspective, and have a non-judgemental attitude towards their thoughts and words.¹³ A good rapport between the researcher and the participant increases the likelihood of obtaining sensitive and rich information. However, a good rapport can also evoke intense emotions, discomfort, and distress in both the researcher and the participant, which is more likely in qualitative research on sensitive topics.^13,15

Sensitive and open questioning

Starting with general questions before addressing aspects that may be sensitive and avoiding jargon or words that can be perceived as judgemental helps to reduce the risk of desirability in responses. Most important is that participants feel invited and free to share thoughts with the interviewer. We learned that if you are experienced in having conversations on this particular topic, you can mention this to participants to lower the threshold of being open. Moreover, we learned that it is helpful to give participants considerable control over the interview by expressing the possibility that participants decide for themselves what to tell and what not to tell. Researchers can ask participants what words they use to talk about taboo topics such as intercourse (‘having sex’), sexual anatomy, or oral sex.¹⁶ We experienced that observing how participants talk about the topic or asking them which words they prefer to use and align accordingly can help the participant share more about the sensitive topic. Mentioning that the topic may be sensitive can help ease possible tension. Moreover, normalizing and acknowledging feelings, even if they are not intuitive or counterintuitive, helps people feel understood and that they can be open. We recommend to prepare how to respond to the emotions of participants, for example, giving the participant the opportunity to take some time to recover, not to judge their perspectives or emotions, letting the participant take control to continue the interview and not to be afraid of participants’ emotions, and allow the participants as well as yourself to have emotions, without being a therapist.

Reflexivity of the researcher

Researchers must critically reflect on their role in the interaction with the participant. When researching sensitive topics, researchers must constantly balance between closeness and distance and ensure that researchers do not become too emotionally involved with participants. Researchers who are also nurses must carefully distinguish between their research and therapeutic roles and reflect on this throughout the research process. It is essential to be aware of interpersonal relationships and professional boundaries and to remain non-judgemental and objective.¹³ The use of field notes to document the researcher’s perceptions of the interview process, their emotional responses, and the participant’s emotional state can help in their reflection and reduce the risk of biasing the interpretation of data.¹ The field notes can be used in the analysis to sharpen the interpretation of the interaction between the researcher and the participant within the specific context of the interview. It can also be helpful for researchers to debrief about their experiences and reactions with other members of the study team.³ Therefore, it is recommended that a special form of supervision is set up during the data collection period to reflect and discuss tensions, conflicts, and successes.¹³

Therapeutic interviewing

The goal of conducting interviews on sensitive topics is to acquire knowledge and gain understanding rather than to facilitate the participant’s healing process. However, talking about the past and expressing feelings and emotions with a non-judgemental interviewer may inadvertently result in a therapeutic effect on participants.^13,17,18 The researcher must maintain focus on the intended purpose of the interview.¹³ Documenting of counselling moments during interviews in field notes is recommended to recognize potential bias.¹ The influence of researchers causing emotional distress to participants during interviews is relatively understudied. There is currently no evidence suggesting that this distress surpasses that experienced in everyday life or that it always requires follow-up counselling. Therefore, the researcher’s interview skills play a pivotal role in mitigating these problems alongside with upholding ethical integrity.¹¹ From our experience, we learned that, despite some participants experiencing distress or discomfort, many participants derive positive outcomes from participating in sensitive topic research. They perceived value in sharing their stories and expressed relief in bringing their experience to light after feeling compelled to conceal their thoughts and experiences. In addition, some participants report a sense of purpose in contributing to increased awareness and the potential improvement of care for others who share similar experiences.¹⁹

Analysis

Researchers might find it specifically difficult to interpret the data if it is a sensitive ethical topic for themselves (e.g. euthanasia) or if it emotionally burdensome (e.g. abuse). Open communication in the research team, reflection and debriefing of the interviewer, defining pre-understandings, and making field notes can enhance trustworthiness in these situations.²⁰ We recommend allowing yourself extra time for the analysis and describing reflection on the researchers’ role during the interview (reflectivity) and the participants’ reactions and how this affects the data and interpretation of the data in the publication. For example, to what extent was the participant able to open up and speak freely about his/her perceptions and how does this affect the results?

Reporting

To facilitate reporting of the study, we advise to use a reporting guideline, such as the consolidated criteria for reporting qualitative studies (COREQ).²¹ In addition to such a guideline, in reporting the methodology and analysis of the study, it is important to describe the strategies that are used to deal with recruitment issues, the choice of interview method, the creation of a safe and comfortable environment, sensitive and open questioning, reflexivity, and building rapport.

The discussion section needs to include a critical reflection of the methodology and strategies and the potential risk of bias.

Ethical considerations

Gaining ethics approval to conduct research on sensitive topics can be challenging. Although interviewing on sensitive topics allows participants to be heard and interventions need to be designed to help them, paternalistic decisions complicate or do not allow research with vulnerable persons.¹⁹ The following strategies to deal with confidentiality and potential risks might help overcome these difficulties.

Confidentiality, privacy, and data protection

To ensure participant confidentiality and privacy, participants’ data should be coded and transcripts of interviews should be pseudonymized, securely stored and accessible only to the research team. Data should be carefully edited and reported in a way that does not make participants identifiable. Data from for example focus groups should edit out the names of the participants on the sound file. This means that characteristics of participants should be reported on the sample level and not for each participant individually, and careful consideration should be given to which characteristics should be reported. If a sensitive topic appeals to a low percentage of people, the researcher may consider anonymizing the study site. We recommend being transparent about considerations for avoiding participant identification.

Participants’ confidentiality, privacy, and data protection should be addressed in the study information and informed consent, and it might be helpful for the participant that the researcher repeats this information.¹

Risk assessment

It is important that researchers are aware of the risks and have strategies to diminish the potential risk for participants and to outweigh the potential benefit of participation.²² These strategies need to be described in the informed consent and institutional review board documents before the start of the study.²³ Such strategies might include creating a distress protocol that can be used when participants experience distress during the interview. Such a protocol can include actions when to terminate the interview, e.g. when the participant decides to terminate or reschedule the interview, or interventions, e.g. take a break, stop the audio-recorder, stay with the participant, stop the interview, and get consent to contact the participant later that day or the day after to check on the participant, or refer to others for support, for example, a support group, counsellor, or general practitioner.¹⁴

Examples

Example 1: Medication non-adherence (sensitive topic due to potential shaming, reflection of behaviour)

We interviewed patients with hypertension whose blood test results showed that they were not adherent to their medication regimen, although they considered themselves as being adherent during consultations with healthcare professionals.²⁴ To anticipate the possibly limited number of patients who were willing to talk about this sensitive topic of their non-adherence, we extended the time since patients’ got their test results. Seven of the 20 patients did not want to participate because they did not want to talk about medication adherence and because of time constraints.

We carefully formulated the open-ended questions in the topic list to invite patients to speak freely without being judged. We also performed a pilot interview which helped us to find the right words and tone. Interviews were conducted face-to-face at the patient’s home to create a comfortable environment. Participants were preferably interviewed alone to ensure that they could speak freely. All participants felt positive about their participation, and three participants felt relieved that they could talk about their non-adherence and make up for their non-adherence. We also learned that it was sometimes difficult to ask questions about non-adherence when patients did not consider themselves non-adherent during the interview. We learned that having a non-judgemental and non-confrontational attitude helped to listen to patients’ stories.

Example 2: Sexuality (sensitive topic due to taboo topic, shaming of professional)

Our study was designed to gain insight in sexual health after a cardiac event. Over the years, several studies showed that this subject is discussed rarely and that both patients and healthcare professionals find it difficult to discuss.²⁵ In a recent interview study of patients after implantation of an LVAD, we experienced difficulties in patient recruitment by clinicians for the study, either based on lack of time, lack of interest for the study, or discomfort to introduce the study. When we changed the recruitment strategy to recruitment via social media, we were able to recruit a large number of patients in a short time. Another lesson learned in that study was that although in the patient information it was clearly stated that the aim of the study was to discuss intimacy, body image, and sexuality, the patients were very focussed on discussing sexuality first and found it difficult to focus on the other aspects of the interview. This might be due to the sensitivity of this specific part of the interview and patients wanted to ‘get it over with’.

Finally, we learned that both interviewer and patient could feel uncomfortable discussing the subject, and it helps air this in the beginning of the interview. The interviewer stated in the beginning that this was a subject that might be strange or a ‘taboo’ to talk about (since they were both young persons) in an interview situation.

Example 3: End-of-life care (sensitive topic due to overwhelming emotions, taboo feelings talking about dying).

To gain insight into how parents cope with loss and grief at the end of their child’s life, we included parents of children with a life expectancy of less than 3 months or shortly after their child’s passing. While some healthcare professionals seemed well prepared to invite eligible parents, many were hesitant to do so. Fear of burdening vulnerable parents and ‘difficulty disclosing the focus of the study’ were the main reasons for this so-called gatekeeping.⁹ We learned that a note with a script that healthcare professionals could use for this invitation was helpful. In this invitation, we not only explained the focus of the study, but we also mentioned that learning from them as a parent in this situation was the only way to improve care. For many parents, helping other parents was an important reason to participate.

Over the years, we have learned that interviewers feel much better prepared when the interview guide is elaborated with the concrete formulation of questions that fit parents’ language. We always begin the conversation with building rapport by inviting parents to introduce their child. Who is he/she was a person, what characterizes his/her identity. Then we ask them to describe daily life. In this way, parents tell their story, and the interviewer can connect to the parents’ lived experience and invite them to talk about the sensitive topic of loss and grief. We also learned that although parents may be full of emotion or even cry a little at times, this does not mean they want to stop. Emotions are part of telling their story. We consider it as a normal aspect of the interview and acknowledge their emotions without getting into it too much. If emotions take over, we usually stop the recording to give time to recover. When asked, parents always want to continue the interview. This is consistent with the study results showing that emotions are often controlled to allow parents to do what they feel is important to do.²⁶

Conclusion

Interviewing is a suitable method for studying sensitive topics. Such interviews have unique challenges that require strategies throughout the research process to anticipate on patient safety and the researchers’ wellbeing. These strategies include choosing the appropriate interview method, creating a safe and comfortable environment, utilizing sensitive and open questioning, building rapport, reflexivity of the researcher, and awareness of the potential therapeutic effect of the interviews.

Author contributions

Heleen Westland, PhD (Conceptualization, Data curation, Methodology, Project administration, Resources, Validation, Visualization, Writing—original draft, Writing—review & editing), Sigrid Vervoort, PhD (Conceptualization [equal], Data curation [supporting], Methodology [equal], Validation [supporting], Writing—original draft [supporting]; Writing—review & editing [supporting]), Marijke Kars, PhD (Conceptualization [supporting], Methodology [supporting], Validation [supporting], Writing—original draft [supporting], Writing—review & editing [supporting]), and Tiny Jaarsma, PhD (Conceptualization [equal]; Methodology [supporting]; Validation [supporting]; Writing—original draft [supporting]; Writing—review & editing [supporting]).

References

Author notes