Researchers With Benefits? Methodological and Ethical Challenges and Possibilities in Sexuality Research Within Marginalised Populations

Abstract

While the qualitative research interview can be a relevant and effective method, it can also be highly demanding for both the researcher and the participant. In this paper we analyse the methodological and ethical challenges that can arise for sexuality researchers who conduct interviews with members of marginalised communities. We thereby aim to open a discussion and contribute with knowledge that we ourselves missed as doctoral students – and still do as researchers – and which we therefore hope can be used in education as well as in continuous reflexive discussions among scholars conducting sexuality research in general – and in particular with individuals belonging to marginalised populations. We revisited our separate previous studies and made a joint re-analysis of our interview processes in three different projects conducted in Sweden between 2011 and 2021. Participants in the three studies were people with disability/chronic illness, transgender and non-binary gendered people and incarcerated young people in secure state care. We argue that the qualitative research interview can be seen and used by interviewees as an opportunity for advice and emotional support and that the methodology can bring added therapeutic value to participants whose sexual health needs have been previously ignored or denied. The researcher should therefore be prepared to share whatever sexuality-related knowledge or support the interviewee seeks – anything else would be unethical. Essentially, this concerns the very fundamental reason why we are doing research in the first place: to contribute to new knowledge on sexuality and thereby greater possibilities for the realisation of the sexual health and rights of persons belonging to marginalised communities – but without this happening in a way that jeopardises interviewees’ well-being. We therefore suggest that qualitative interviewing on sexuality requires systematic preparative work with reflexivity on how to balance research ethics, professional conduct and academic rigour.

Introduction

Human sexuality can be studied in a myriad of ways, depending on which aspects of sexuality and in which groups the research interest lies. In that sense, sexuality research is like any other research area; however, at the same time, it is often framed as a so-called “sensitive topic.” In the context of this paper – Sweden – data on sexual life or sexual orientation are listed as sensitive personal data requiring ethical vetting according to the Ethical Review Act (SFS, 2003:460). Data-collection methods that entail in-person meetings between research participant and researcher can also add to the sensitivity level of the research, as the participant is subject to the abilities and personal skills of the researcher. In this paper we are interested in interviews and, specifically, in interviews conducted in sexuality research with participants who belong to under-represented or marginalised groups. Drawing on our previous research with people with various types of disability/chronic illness, with transgender and non-binary gendered people and with young people incarcerated in secure state care, respectively, we describe and analyse a specific but complex methodological challenge.

This challenge concerns the fact that, as sexuality researchers, we are often seen as authoritative figures when it comes to knowledge on sexuality, which can lead some interviewees to have expectations of the interview being useful to them in terms of discussing their sexual issues with an expert. In these instances, informants may ask the interviewer for specific advice and information or, more generally, may take the opportunity to discuss their sexuality with someone who will listen to them no matter what, without having to pay for it and perhaps for the first time. With such experiences in mind, methodological and ethical issues come to the fore, issues which, in our experience, are neither discussed openly nor taught about on, for instance, doctoral programmes. In hindsight, for us, having conducted our PhD studies in departments of social work and having backgrounds in human service work, discussions about how to combine our professional ethics and skills with those of the academy would have been especially rewarding.

Therefore, the aim of this paper is to describe and analyse the methodological and ethical challenges that can arise for sexuality researchers who conduct interviews within marginalised communities. We aim to open a discussion and contribute with knowledge that we ourselves missed as doctoral students – and still do miss as researchers. We therefore hope that this paper can be used in education as well as in continuous reflexive discussions among scholars conducting sexuality research with individuals belonging to marginalised populations who may, therefore, have underlying motives for taking part in research – such as having their personal stories heard for the first time (cf. Plummer, 1995).

We begin by presenting what we have found to be useful scholarly discussions on methodological challenges and possibilities in qualitative interviews in general – and sexuality research within marginalised communities in particular. Thereafter we present the research upon which this paper is based, followed by a findings section where we use extracts from our interviews that illustrate the challenges faced. Lastly, we discuss the findings and offer some conclusions on what we see as potentially fruitful ways forward in more adequately preparing young scholars for sexuality research within marginalised communities and the methodological and ethical challenges that may arise.

The Qualitative Research Interview: Possibilities and Challenges

A qualitative research interview should be a professional conversation where “all parties contribute to the production of knowledge, albeit in different ways” (Brinkmann, 2020, p. 1). To simplify historical changes, research interviews have moved from being positivistic –characterised by the researcher “extracting” information from the interviewee, preferably without any of them “contaminating” the data with subjectivity – and more towards hermeneutic processes where interviews are seen as interviewer–interviewee collaborations. In collaborative or less-hierarchical interview situations, researchers aim to play less-powerful roles and it has been suggested that researchers committed to reflexivity and feminist research practices can require more emotional support than those adopting a more distant and “objective” stance (Sampson et al., 2008). Various strong emotions have been described among qualitative researchers: outrage (McClelland, 2017), exhaustion, distress, powerlessness, overwhelming emotions (Emerald & Carpenter, 2015; Santinele Martino, 2022), resentment and shame (Huysamen, 2020). Strong emotions can be experienced even when the researcher and the participant do not meet – for example, when secondary analysis was conducted on children’s written stories of distress, neglect and abuse, researchers engaged with and managed emotional states such as sadness, anger and horror (Jackson et al., 2013). In fact, emotional harm has been described as an “inevitable corollary of close research relationships” for qualitative researchers (Sampson et al., 2008, p. 930).

Despite emotions always being inherent when engaging in qualitative work, power shifts and emotional labour in the interview situation are not always analysed; instead “power and emotions are often downplayed and not included as important data” (Hoffmann, 2007, p. 319). Moreover, the qualitative or open-ended interview is characterised by uncertainty and can develop into unexpected areas not anticipated by the researcher, as the minimal structure and the interested listener can empower the participant to share information that was not directly sought. Hoffmann (2007) elaborates on various examples of emotional labour performed by a researcher in interview situations and reflects upon the multiple and sometimes conflicting roles that the researcher performs. These include being a student or outsider (learning from the participant in a curious fashion) and being a confidant, confessor or therapist (receiving the participant’s sometimes upsetting story in a calm and respectful manner). Hoffman’s description of interviewer roles was based on her own experiences; however, the experiences of the therapeutic effect resulting from participation in research interviews has been found to be a motivation for interviewees to take part in other studies, as well (see, for example, Liddiard, 2018; Peel et al., 2006; Santinele Martino, 2022).

A study looking at college students’ experiences of transitioning to life after college revealed similar results, leading the researchers to conduct a follow-up study specifically on the therapeutic effect of taking part in interviews (Perry & Bigelow, 2020). Their initial literature review shows that therapeutic effects of interview participation have been demonstrated in previous research, relating to the ways in which an interviewer or a therapist, respectively, succeeds in building a rapport through facilitating feelings of empathy, closeness and caring with a client or an interviewee. These aspects are, indeed, foundational for the beneficial outcomes of a therapy session as well as a qualitative research interview. Thus, facilitating reflection, meaning-making and empowerment – which (ideally) happens in both therapy and qualitative interviews – can be beneficial for both the researcher and the interviewee. One of Perry and Bigelow’s study participants reflected upon this: “It [the interview] ended up being so therapeutic. I think that people just don’t take the time to really reflect…it just helped me put life into perspective” (2020, p. 8).

Participants also mentioned how the interview fostered self-exploration and led to a greater sense of self-awareness, which lasted for years after the interview took place. Compared to a therapy session, the research interview felt even more satisfying: “…just having someone to listen and understand… that you’re not there to fix me, you’re not there to make me better, you’re not there to tell me how to do it…” (Perry & Bigelow, 2020, p. 10). In other words, an interview can be experienced as even more adequate or beneficial than therapy, depending on an individual’s current needs. Finally, an important finding was that several participants reflected upon how being part of a study enabled them to feel less lonely and as part of a bigger group in which individuals shared the same problems or experiences; thus, they also realised that their participation could potentially help others in the future (Perry & Bigelow, 2020). An interview can therefore also have meaning beyond individual needs.

Nevertheless, while the qualitative research interview can be a relevant and effective method, it can also be emotionally demanding for both the researcher and the participant. Next, we specifically discuss the literature regarding the conduct of interviews about sexuality with people in marginalised positions, where the sensitive nature of the issues researched can add an additional layer of complexity.

Interviews About Sexuality With Members of Marginalised Populations

When conducting sexuality research, we are invariably part of knowledge production on sexuality – what Foucault (1978, p. 34) defines as:

…the wide dispersion of devices that were invented for speaking about it, for having it be spoken about, for inducing it to speak of itself, for listening, recording, transcribing, and redistributing what is said about it.

Still, acknowledging that we are part of this confessional discourse and may be seen as “experts” with the power to define and assess the intimate lives of research participants, we as researchers must also be able to speak about sexuality in a reassuring and professional fashion – not least from an ethical point of view. However, this is a competence which we may not have learned in previous education or during our doctoral studies (Areskoug-Josefsson et al., 2019; Dickson-Swift et al., 2008). Perhaps connected to this lack of training, there have been descriptions of discomfort among focus-group moderators conducting sexuality research (Wellings et al., 2000). In addition to this potential lack of training in sexuality research, we might be sneered upon, within or outside academia, for doing “dirty work” (Irvine, 2014; Keene, 2022), not least in highly contested research areas such as sex work (Hammond & Kingston, 2014) or pornography (Attwood & Hunter, 2009). Furthermore, ethical review boards may resist approving sexuality research with “vulnerable groups,” thus potentially excluding them from being heard at all (Santinele Martino, 2022). Sexuality research has even been labelled as contradictory to other forms of research, since what might provide a researcher with pleasure (e.g., promoting work to the public or teaching about sexuality) can end up feeling dangerous for a sexuality researcher, while what might actually be dangerous to a researcher (e.g., investigating taboo areas, calling out homophobia, racism, classism and sexism) can be pleasurable for sexuality researchers (Fahs et al., 2018; Liddiard, 2018). In other words, sexuality research is not always thought of (by outsiders) or experienced (by insiders) as being like any other research area, for several reasons.

This is not least the case when the researcher also belongs to the group being studied. In methodological reflections of ethnographic studies, where both researchers and participants had transgender experience, this shared marginalised position was stated as beneficiary for participants, researchers and the research process alike (Reicherzer et al., 2013). On the other hand, it can also be highly emotionally exhaustive due to the inevitably personal impact that it can have (Pearce, 2018). There are similar experiences of being granted access to interviewees’ intimate lives owing to a shared lived experience of disability; this simultaneously eases mutual understandings of disabling barriers and oppression – but can also create difficulties for the researcher in distancing themselves from the material and its analysis (Blockmans, 2019; Bylund, 2022).

However, a shared or insider’s position is not always possible or desirable. Due to the little practical guidance in the literature on sensitive qualitative research, a Guide for Reflexivity has been developed for researchers working with a group from a different cultural, ethnic or socioeconomic background to their own (Joseph et al., 2021). The guide consists of self-reflexive questions to help researchers anticipate and address important issues which may arise at each stage of the research process. The use of such a guide appears wise and could potentially prevent what McCracken (2020, p. 4) describes as research and/or researcher fatigue among marginalised individuals and communities who are “tired of being “researched,” spoken for, and left behind by external researchers.” Another way forward in creating more inclusive research environments is to use collaborative methodologies whereby co-researchers with lived experience are employed alongside academic researchers and participate on an equal footing in the research process (cf. Liddiard et al., 2022).

As “outsider” researchers we can thus, on the one hand, find ourselves in an uncomfortable position when seeking to investigate the “special nature” of the marginalised experience, which can be thought of and, indeed, felt as colonial or otherwise exploitative (Clark, 2008). On the other hand, as a trained social worker and school health nurse, respectively, we find ourselves in positions of working to disseminate our findings in ways which can potentially contribute to the improvement of our professional fields, so that disabled or chronically ill people, transgender and non-binary gendered people and young people incarcerated in secure state care will hopefully receive better care and support in the long term (cf. Perry & Bigelow, 2020). While this improvement will probably not happen for the individuals whom we interview and, although many participants decide to contribute based on altruistic ideals (e.g., Peel et al., 2006), we also acknowledge that their reasons for participating can often be related to their immediate need to be heard and recognised or to receive advice and emotional support – often owing to the fact that such needs have not been adequately met by professionals in other contexts (cf. Liddiard, 2018; Santinele Martino, 2022).

Our approach to researching sexuality in the lives of people in marginalised communities, in our double roles as trained human-service professionals and academic researchers, has thus been inspired by Plummer’s (1995) notion of “telling sexual stories” as a both personal and political possibility for sexual recognition and voice. In a society where the stories about sexuality are largely absent or merely problematised for disabled/chronically ill people, transgender and non-binary gendered people, and young people incarcerated in secure state care – not to mention the actual realisation of their sexual rights – there is a potential for sexual empowerment at an individual as well as at a collective level. As Plummer (1995, p. 150) asserts, the sexual rights and empowerment of marginalised individuals and groups

…depend upon a community of stories which make those same rights plausible and possible. … The nature of our communities – the languages they use, the stories they harbour, the identities they construct, the moral/political codes they champion – move to the centre stage of political thinking.

In other words, the research context can become an avenue not only for new knowledge to form but also increased self-awareness and conceptualising one’s experiences in new ways, for all parties involved. Against this background, we now present the methodology behind the reflexive analysis of our somewhat ambivalent researcher positions, after which we discuss our findings.

Methodology

For the purpose of this paper, we revisited our separate previous studies and made a joint re-analysis of our interview processes in three different projects conducted between 2011 and 2021. Participants in the three studies were those who are disabled and/or chronically ill, transgender and non-binary gendered people and incarcerated young people in secure state care. These marginalised groups are globally well known as being vulnerable regarding their opportunities to attain sexual health (WHO, 2015). We regard ourselves as outsiders in relation to participants as we do not share any of these lived experiences. In the re-analysis, discussing and comparing our experiences in and between the three projects was the key activity. In doing so, we agree with Markowitz (2021, p. 95), who underscores the “value of turning a critical eye to ourselves as objects of inquiry […] when our participants have few avenues to alter their circumstances in contrast to the privilege we benefit from as researchers.” Our endeavours can be seen as efforts to increase our researcher reflexivity, an attempt that has potential benefit for future researchers as well as research participants.

The first project comprised interviews conducted in 2020–2021 with 65 persons (22 to 67 years old) who had various experiences of disability and/or chronic illnesses. The interviewees were also diverse in terms of gender, sexual orientation, geographical location across Sweden and, to a lesser extent, with regards to “race”/ethnicity, spirituality and cultural background. The project comprised interviews in various formats depending on the individual’s accessibility needs and wishes (cf. Liddiard, 2018), including IRL (in real life or in-person) interviews, chatting over Messenger or in phone and Zoom interviews, as well as non-synchronous written responses to interview questions (sometimes including follow-up questions and answers). This postdoctoral project was ethically approved and aimed to explore the barriers faced by the interviewees with regards to their sexual health and well-being.

The second project comprised interviews about sexual health with 20 transgender and non-binary gendered persons (18 to 74 years old) conducted in 2014–2015. Eight of the participants identified as women or trans women and seven as men or trans men, while five had a non-binary gender identity – all were of Northern European origin. The study was ethically approved and had an overarching aim of exploring barriers and facilitators for experiencing sexual health (Lindroth, 2016; Lindroth et al., 2017).

The third project was conducted in 2011–2012 and drew on interviews about sexual health with 20 incarcerated young persons aged 15 to 20 years in secure state care. Nine identified as girls and eleven as boys and half of them were – or had parents who were – born outside Sweden. The study was ethically approved and aimed at understanding the rationale behind sexual risk-taking among incarcerated young people (Lindroth & Löfgren-Mårtenson, 2013).

During our reflexive discussions, we became aware of two things. Firstly, that methodological or ethical challenges connected to qualitative research interviews within sexuality research are rarely at the centre of collegial discussions; secondly, that our experiences were more similar than different, despite the heterogeneity among our research participants. The comparative and reflexive discussions resulted in one main finding – namely, that the interview can be seen as an opportunity for advice and emotional support and that it comprises an added, sometimes therapeutic, value. This is presented and discussed below through quotes from participants (all names are pseudonyms) which we hope illustrate our findings.

Findings

We begin with an example from the sexuality and disability/chronic illness study in which Julia asked Patricia, a woman in her 40s who had gone through several serious surgical procedures over the years, why she wanted to participate in the study:

I mean, I’ve been through a great deal. And the issue that is never talked about or asked about is sexuality. During all of these years no one has ever asked me about it. How one is affected by not feeling well when one has had surgery – not even when you remove a breast from a woman do they ask how that affects her sex life! And I think that’s a disgrace! So yeah, I thought that this [study] sounded like something that I would actually want to be part of, because I think it’s really important.

Patricia’s motivations for partaking in the study were similar to those of other interviewees. Sexuality is seen as an important part of a person’s life and identity and yet many experienced ignorance and the ignoring of sexuality issues in the various contexts where they were seeking help or receiving assistance related to their disabilities or chronic illnesses. For Patricia, being fitted with a stoma bag was a traumatic experience, even worse than having lost one breast to cancer or the other chronic conditions that she was living with. She explained that she currently has “no sex life at all” and that her husband “isn’t allowed to come near me” because of her feelings of disgust towards her “new” body with the stoma bag – a feeling that her husband did not share but with which she nevertheless could not reconcile herself.

Having realised the importance for Patricia of feeling comfortable in her body in order to have sexual relations with her husband, we inevitably ended up discussing ways forward. Although that was not the aim of the interview, following her emotional disclosures of her deepest feelings around how changes in her body had affected her sexuality, in combination with the lack of acknowledgement from healthcare providers, I felt that it would be unethical for me to not respond following her statement “I don’t know what to do anymore.” Having established that she actually felt safe with her stoma nurse, realising that she would probably be open to discussing sexuality, considering their previous encounters, I reassured her that, from a professional standpoint and in accordance with the healthcare law, she would not be asking for support that was outside the remit of her carer. Furthermore, we discussed the possibility of getting in touch with other women in the Facebook group for stoma patients where we had found each other following my request for interview participants. Although sexuality was not commonly discussed in the group, she had seen comments relating to the topic and was already in touch with women who she potentially felt she would be able to confide in. I also shared information about a patient organisation which I knew had done work around sexual health in relation to stoma and similar conditions.

In other words, I felt it to be my ethical responsibility – both as a sexuality researcher aiming for my research to have real world impact and as a trained social worker who responds empathetically and supportively to clients’ distress – to support Patricia by responding to her emotionally charged expressions. Since this was the first time that she had talked to someone about her difficulties with the stoma in relation to her sexuality, I felt that I had been awarded a great deal of trust, to which I wanted to respond in the best possible way. The thought of leaving her crying and distressed without adequate acknowledgement made me feel both ethically and morally obliged, for a moment, to depart from my aim as a researcher in pursuit of “a good interview” and to rely more on my professional social-worker background. By reassuring her that she was not alone in her feelings of not having been supported adequately in the care that she received with regards to her sexual health and well-being, I was also able to contribute to Patricia feeling less isolated with her feelings of being “abnormal” or “wrong,” encouraging her, instead, to see this as systematic failures in the health care system. Again, this may not have been one of the initial aims of the interview, since my purpose was to “elicit” details of the kind of sexual health barriers that interviewees faced – but leaving it at that without trying to make sense of it together, when I had the means to do so, would have felt wholly inadequate.

Patricia was not unique in this regard; there were several interviews where, following discussions about the barriers that the individuals faced with regards to their sexual health and well-being, we inevitably began reflecting around what they could do to feel better or to get more information, depending on their needs. For instance, Daniel, a man in his 40s with an intellectual disability, asked a lot of questions about contraception and about what is “normal” in relation to how the body looks and feels. Although he had previously received counselling from a sexologist following problems in his previous relationship, in my interview with him he confided to me that he had not found the sessions helpful, largely due to him not adequately understanding the therapist. Since my research had comprised a mapping and analysis of Swedish projects dealing with sexuality and disability, I knew, in fact, that there were several materials, written in easy-to-read Swedish, which I shared with him. Daniel also contacted me on Messenger after the interview to ask questions about sexuality and bodily functions, to which I replied and offered suggestions for where he could find out more. Again, I felt that this was my responsibility as a sexuality researcher – as well as an opportunity for my research to have a direct impact and a way to give something back to the interviewees who had volunteered their time and sometimes emotional efforts to share their stories. Not responding simply because the interview was over (for me) would not have acknowledged the remaining need for information of a man who had lived most of his adult life without having been adequately supported in learning about sexual health and well-being.

Another example concerns Mary, a trans woman, in her 70s and yet at the very beginning of her coming-out process. She had made her first visit to a hospital-based gender identity investigation team only weeks prior to the interview. It soon struck me (Malin) that her need to discuss various aspects of being transgender – and not only sexual health – appeared infinite and I got the impression that I was one of the very few people with whom she had ever discussed this. Her account of a full life lived whilst knowing that the gender assigned to her at birth was not the proper one moved me emotionally. Mary was, however, happy and talked about her on-going “re-birth.” As I was in no hurry and had assigned the whole day for the interview, I stayed at her place for dinner and a long walk in the forest, followed by coffee and cake. The tape recorder was shut off after approximately 1 hour before dinner but something stopped me from leaving Mary so soon. Like Julia described it above, I felt an ethical obligation to provide Mary with whatever knowledge and support I could and to discuss whatever she needed to discuss and to listen to her story as a way of repaying her for participating in my study. With hindsight, I might have met Mary’s need to be heard and seen by someone who was not part of the gender identity investigation team, someone with no power or say related to her access to care. That afternoon we formed and worked out what Mary appeared to be in need of – a small community.

Our last example is from the interviews with incarcerated young people. In this study Malin visited different secure care institutions in Sweden and, on one visit, met Rebecka. She was 16 years old and said that she had been placed at the secure care institution because she used alcohol and cannabis and had run away from home. At the end of the interview, when we had discussed various aspects of sexuality, sexual health and sexual risk-taking, I asked Rebecka about the first time that she had sex with someone and whether she could remember anything particular from that occasion – a routine question that all interviewees were asked and which did not usually generate any special emotional charge. However, in Rebecka’s case, she went quiet for a while and then said:

Yes, (laughing), that I was drunk. You know, I must tell you something. I’m not sure if I was raped (laughs again). I probably shouldn’t laugh. But I don’t count this as losing my virginity, or that they took my virginity then. I was thirteen, and allowed to sleep in a basement, I was on the run from a residential care home.

Following this disclosure, a conversation unfolded where Rebecka said that this was a situation that she had kept from both her social workers and from staff at previous residential homes, as well as from the secure care institution where she was currently placed. Her reason for doing so was that she did not want to be forced to discuss the event nor did she want it to be part of her story, accessible for professionals. She then told me the full story and used me as an adult discussion partner with whom she could go over the different aspects of the event; in the end, she wanted me to tell her what I thought – had she been raped or not? I told her that I thought that it seemed as if she had indeed been raped. Rebecka appeared to appreciate my input and then said that she rarely thought about this experience, that she had had many rewarding sexual encounters since then and we simply continued the interview.

10 years later, I am ambivalent about whether or not I did the right thing as a qualitative researcher, when adapting to Rebecka’s matter of fact-analysis of her probable rape at the age of 13 and if her use of me as a discussion partner was beneficial for her or not. However, from the perspective of an ethical obligation to respond to interviewees’ questions and emotional responses in a suitable matter depending on the situation, it seems to have been an appropriate judgement call. It would simply not have felt right to avert a discussion about a seemingly significant life event just because it did not fit the initial interview script. Indeed, not unlike the previous examples, this felt like the right thing to do when facing an incarcerated young woman whose sexuality had mostly been regarded as something problematic throughout her difficult life.

The four examples with Patricia, Daniel, Mary and Rebecka represent similar situations whereby our decisions to grant them, as interviewees, a space for personal reflection and exploration was both an individually supportive act as well as a political one (cf. Plummer, 1995). Next, we develop our arguments further and end by offering some concluding suggestions for further reflection and the development of ethical research practice.

Discussion

Our findings suggest that the qualitative research interview can be seen and used as an opportunity to offer advice and emotional support and that such a methodology can bring added therapeutic value to participants (cf. Perry & Bigelow, 2020; Santinele Martino, 2022). In our projects we have interviewed individuals who belong to marginalised communities in general – specifically, their sexual health and well-being are also often marginalised issues. For example, the opportunity to discuss sexuality and thereby be recognised as sexual beings – perhaps even for the first time in their lives – was given as a reason by several disabled participants, both implicitly and explicitly, for taking part in the research (cf. Liddiard, 2018). However, what we have been wanting to discuss additionally through our examples is that Patricia, Daniel, Mary and Rebecka were given emotional support and supportive suggestions that went beyond the purpose of the interview (on our part) – leading to a methodological and ethical dilemma in our roles as academic researchers with human service professional backgrounds.

Since interviewing is often a solitary activity, the researcher cannot turn to nearby co-workers for advice (Hoffmann, 2007). Additionally, formal structures such as peer and clinical supervision and regular debriefing sessions are largely absent from research design and practice (Markowitz, 2021). In this solitary endeavour, often embarked upon without knowing participants’ reasons for agreeing to take part in an interview, we believe that who you are matters and that the individual researcher can be of significance to how the added therapeutic value is delivered. This has previously been described in studies where the researcher belongs to the same group as the study participants (e.g., Bylund, 2022; Liddiard, 2018; Pearce, 2018). To us, however, it is our professional backgrounds and experience as a social worker and a school health nurse, respectively – and the ethics connected to each of these professions – that have been helpful in interview situations. These professional ethics have been especially valuable since nothing in our doctoral studies prepared us for how to handle participants’ needs for information, support and affirmation or other expressed needs which fell outside the immediate purpose of the interview. However, for the same reasons, we have also felt that we were lacking in methodological and thereby academic rigour.

It has been suggested that in-depth interviews on sexuality create a politics of intimacy between research participant and researcher, a politics that may be a part of creating politically engaged knowledge (Plummer, 1995; Zago & Holmes, 2015). To us, adhering to the needs of the research participants has outweighed adhering to the traditional moral matrix, which can feel restricting in how an interview situation ideally “should” be. Perhaps the mutual and reciprocal knowledge-sharing that we have experienced is not a methodological or ethical dilemma but a dynamic form of interviewing, not unlike the concept of “informal conversations” (Swain & King, 2022). In these interviews, the potential benefits for the interviewee, when meeting a person who can be useful in their life, should be explicitly acknowledged. What is more, therefore, these courses of events, regardless of how they turn out, should be shared in methodological or ethical sections in scientific papers (cf. Santinele Martino, 2022).

The participants described in our paper all belong to marginalised communities, as do the ways in which issues related to their sexual health and well-being are met. Although they have been part of projects that may contribute both to society and to our academic careers, their participation is not necessarily beneficial either for them directly, for their lived experiences or for their communities (cf. McCracken, 2020). In light of this, expecting and delivering the added therapeutic value that research participants may want and need from us ought to be reasonable. Regarding Daniel, with his intellectual disability, it also appears as if the interview situation compensated for previous communication about sexuality that had not been at his level of understanding (cf. Santinele Martino, 2022; Turner & Crane, 2016).

Making qualitative research count and for it to lead to substantial change is difficult; it is decidedly frustrating when results do not lead to change to the extent and at the speed at which we, as researchers, deem necessary. This is worrisome, since a previous study reported that, when researchers were interviewed about how they understand and negotiate their research relationships, antecedents to research fatigue were found among them, with one antecedent connected to experiencing a lack of perceptible change (Clark, 2008). To prevent researcher fatigue, one can turn to Pearce (2020, p. 818) who promotes a “Methodology for the Marginalised,” suggestions from which include both universities being obliged to provide a paid role for trained counsellors to support researchers undertaking emotionally challenging research and funding to be available for counselling and therapeutic support in grant proposal budgets.

In sexuality research specifically, both formal and informal spaces for researcher reflections have been called for, spaces where researchers can “voice their moral doubts, feelings, failures, blind spots and missteps” (De Graeve & De Craene, 2019, p. 598). Sampson et al. (2008, p. 930) claim that “researchers and students committed to reflexivity and feminist research practices require more support than those adopting a more distant and objectifying stance.” Possible supportive solutions mentioned in the literature are related to achieving self-awareness and reflexivity through training, peer-support, formal psychological support, debriefing, input from stakeholders, individual or team supervision and ethical mindfulness (Silverio et al., 2022; Taquette & Borges da Matta Souza, 2022). To this, we would like to add potential support needs among researchers who are doing qualitative research with marginalised populations who experience oppression in society, perhaps particularly when also dealing with sensitive issues such as intimacy and sexuality (cf. Bylund, 2022; Liddiard, 2018).

The concept of “being an ally” can also be useful when describing personal qualities that need cultivation in order to perform ethical interviews with marginalised groups. For example, when people with physical and sensory disabilities were asked to describe a non-disabled person in their life who understood and cared about the concerns of people with disabilities, they described someone who offered the appropriate help, was trustworthy, understood disability identity, advocated and acted against ableism, was willing to learn and who communicated effectively (Ostrove et al., 2019). These qualities could, if adapted to context, be relevant for all sexuality researchers doing qualitative interviews. Another, more comprehensive and not always possible, way is to make the “population of interest” truly involved in the research process by employing them as co-researchers (Liddiard et al., 2022).

To concretise, based on our discussed experiences with Patricia, Daniel, Mary and Rebecka, we suggest that qualitative researchers should make preparations before an interview about the potential questions that may come up, based on their prior professional or academic knowledge and on previous research. To us, the questions that came up during the interviews were, in hindsight, not surprising although, without having prepared ourselves for participants to be asking us questions instead of the other way around, unnecessary ethical dilemmas arose, situations that we had to solve ad-hoc. For instance, it is well known that people with an intellectual disability often do not have adequate knowledge about sexuality and relationships owing to the lack of sex education in special schools as well as to desexualising attitudes in society. For Julia, it would therefore have been relatively easy to prepare a set of materials that could be used during the interview or as suggestions for the interviewee to look up afterwards. In the same way, for Malin, the experience of isolation among older and newly transitioned trans persons is known, as is the higher prevalence of experiences of sexual exploitation among young women in state care. Relating to this advance preparedness, we also suggest that researchers arm themselves with the contact details of specialist counsellors or sexology services that interviewees may need after their participation in the study. Even though it is not the purpose of the research interview to give that amount of support, it can very well turn out to be the first time that a participant realises his or her need for it.

Finally, we argue that an ethical conduct of qualitative interviewing within marginalised communities not only recognises the inherent power imbalance but also actively acts to ensure that, for example, the potential need for emotional support or the filling of knowledge gaps be dealt with as smoothly as possible and without compromising either methodological or academic rigour or participant integrity. Essentially, in our view, this concerns the very fundamental reason justifying we are doing research in the first place: co-creating new knowledge on sexual health and thereby contributing to better support. In this process the interviewees’ needs should not be overlooked. On the contrary, they should be explicitly acknowledged and used in the research process as indicators of need, whether emotional, practical or otherwise. They should not be considered only as needs to be documented as findings that can benefit development in the future (and in the meantime, the researcher’s career) but also as needs to be taken seriously and to be taken care of at the moment when they arise. For this, a qualitative researcher should be prepared and ready to respond. We believe that this is our fundamental ethical obligation when conducting qualitative interviews about sensitive issues with individuals who inhabit marginalised positions in society.

Conclusion

Departing from our research experiences over a period of 10 years, we conclude that, when conducting qualitative research interviews about sexuality with participants occupying marginalised positions in society, the researcher should be prepared to share whatever sexuality-related knowledge or support the interviewee seeks. Anything else would be unethical, especially when the interview can be the very first instance for the respondent to have their sexual health needs voiced and experiences discussed. Although our examples are from interviews with people with disabilities/chronic illnesses, transgender and non-binary gendered people and young people in secure state care in one specific country – Sweden – we believe that the findings can also be transferable and useful in relation to research with other marginalised populations in other contexts. We argue that there needs to be a more complex discussion about the ambivalent role that academic researchers with a human service professional background may play when conducting qualitative interviews, in order for interviewees to receive the potential added therapeutic benefit of participating in research, often for free – while at the same time adhering to academic rigour in a way that does not compromise professional ethics.