Bereaved participants’ reasons for wanting their real names used in thanatology research

Abstract

This research ethics article focuses on an unexpected finding from my Master’s thesis examining bereaved participants’ experiences of taking part in sensitive qualitative research: some participants wanted their real names used in my written dissertation and any subsequent empirical publications. While conducting interviews for my thesis and explaining the consent process, early responses highlighted the problematic notion of anonymity for participants engaged in qualitative research. Several participants asserted the significance of immortalizing their deceased loved ones in the pages of my thesis, retaining ownership over their words and maintaining a public attachment to their personal identity. The preliminary responses also resonate with concerns regarding the ethics of assigning pseudonyms and anonymity to participants in qualitative research. Themes in the extant literature tend to centre on issues of researchers’ accountability and transparency towards participants or respect. The present article contributes to the debates surrounding anonymity and confidentiality within qualitative research, and also expands on specific issues pertaining to bereavement research ethics.

Introduction

The present article focuses on an unexpected finding from my Master’s thesis, which explored the experiences of bereaved persons taking part in thanatology ¹ research and whether or not they perceived themselves as vulnerable subjects in need of protection. Surprisingly, several participants requested to have their real names, and those of their deceased loved ones, included in the write-up of the research. They did not want the protection of anonymity, which, as I will describe, is different from confidentiality in research ethics (Tilley and Woodthorpe, 2011). Although previous investigators have explored anonymity as problematic in qualitative research (e.g. Mattingly, 2005; Tolich, 2004), bereaved participants have an arguably unique motivation in their request for real names because of their desire for memorializing their deceased loved ones and garnering a sense of symbolic immortality. Furthermore, in the wake of certain forms of death, such as homicide or suicide, many participants have a strong desire for transparency, honesty and openness in regard to these sensitive issues. As part of this motivation to redress the taboo status of death and the ‘data objectification’ of their loved ones, they prefer to retain ownership of their identity as attached to their words and ideas. Some of these participants pointed out that the use of their real names would help them to relate to the study’s objectives and to derive greater meaning from the results; others noted that to use a false name would insinuate that they have something to be ashamed of. Such considerations may be uniquely important to thanatology research, but the issues raised in this context are also appropriate to consider within a general research ethics framework.

Methods

In early 2014, I carried out a series of qualitative semi-structured interviews in the South Island of Aotearoa/New Zealand with 16 bereaved persons. Participants were recruited through word of mouth or via researchers from previous thanatology studies in which participants had taken part (funeral arrangements, suicide among Maori ¹ persons, and a late-term abortion study). Participants were interviewed retrospectively about their experience of taking part in sensitive, qualitative, thanatology research. Interviews were semi-structured, lasting anywhere from 30 to approximately 120 minutes. All questions were asked in a broad and open-ended manner to avoid feeding answers to participants. Transcripts were coded for key themes using grounded theory (Charmaz, 1995). In the present article, excerpts from ten of these interviews (those relevant to the subject in question, that of anonymity in bereavement studies) are used. Italics are used for names to indicate nom de plumes; otherwise, real names are shown in normal font.

Key literature overview

The purpose of this literature review is to briefly summarize some of the key issues pertaining to the major themes or reasons bereaved participants gave for wanting their real names used in thanatology research. As such, the first part of the literature review examines anonymity and confidentiality in the context of problematic ethical issues arising from these requirements in research.

Expanding on this, the second section is an overview of literature relating to how anonymity can create ethical tensions with participants’ desire for autonomy and identity. In the central study, bereaved persons found this conflict particularly difficult because, at times, they are already feeling a certain loss of identity and autonomy relating to bereavement.

Finally, the key literature on symbolic immortality, memorialization meaning-making and openness regarding death and dying is briefly reviewed. These three themes are critical in thanatology research and were all reasons given by participants for wanting their own and their deceased loved one’s names used in the research write-up.

Anonymity and confidentiality

Anonymity and confidentiality are key requirements in qualitative research ethics, and the two constructs are theoretically distinct (Tilley and Woodthorpe, 2011). Tilley and Woodthorpe (2011: 198) cite Giordano et al.’s (2007: 264) definition of confidentiality as the management of private information ‘that has been communicated in trust of confidence, such that disclosure would or could incur particular prejudice’. In other words, confidentiality is supposed to give the assurance that one’s information will be kept secure and will not cause harm, such as social embarrassment. Anonymity, on the other hand, ‘refers specifically to removing or obscuring the names of participants or research sites, and not including information that might lead participants or research sites to be identified’ (Walford, 2005, cited in Tilley and Woodthorpe, 2011: 198). There will be instances in which anonymity can aid confidentiality, but anonymity alone will not guarantee confidentiality (Tilley and Woodthorpe, 2011). Moreover, anonymity becomes problematic when participants want to be identified for various reasons or the research must be disseminated in such a way, for example to abide by a funding agency’s requests (Tilley and Woodthorpe, 2011).

The conflicting demands of research ethics requirements for anonymity vs the pressure for increased transparency in research methods, as well as expository requests from funding bodies, can place researchers in an ethical conundrum (Tilley and Woodthorpe, 2011). Moreover, Nespor (2000) points out that anonymity does not necessarily guarantee confidentiality, because there are numerous aspects inherent to fieldwork (e.g. administrative tasks, participant recruitment, long periods in the field that increase visibility) that lend themselves to the possibility of participants being identifiable. In addition, Mondada (2014: 185) analysed a number of interview transcripts and found that ‘the anonymization is often mentioned as an argument and a guarantee for convincing the informants that the recording does not present any risk for them’. This is problematic whenever anonymization does not in fact guarantee confidentiality, because participants can still be recognizable by particular aspects of their narrative, even when identifying data (such as real name, geographical location, persons they discuss) have been anonymized (Mondada, 2014).

Van den Hoonaard (2003), Bosk and de Vries (2004) and Tolich (2004) have similarly pointed out that, whereas anonymization works adequately in quantitative research, it is highly problematic in qualitative research and does not guarantee confidentiality. In order to include data for participants who wanted their real names to be used, I had to return to the ethics committee and justify the use of real names, despite the fact that pseudonyms do not guarantee anonymity in qualitative research anyway, as van den Hoonaard (2003), Bosk and de Vries (2004), Tolich (2004), and others have noted. For example, Tolich (2004) lists a number of studies where participants have recognized themselves and others in the research write-up, despite anonymization, and such recognition caused emotional harm to participants (see, for example, Whyte’s seminal text Street Corner Society, 1981, or Ellis’s ‘Emotional and ethical quagmires in returning to the field’, 1995).

Anonymity, autonomy and identity

Citing Giordano et al. (2007), Tilley and Woodthorpe (2011: 200) point out that ‘on the one hand, to reveal identifying features challenges the normal expectation of the benefit of protection that anonymity brings; on the other, upholding the principle of anonymity could actually serve to undermine the research and/or participants’ autonomy’. Grinyer (2002, cited in Tilley and Woodthorpe, 2011: 200) has also discussed how participants might feel they are ‘losing their ownership’ of their words and ideas when it becomes anonymized as data.

A further problem involving anonymity has been highlighted by Nespor (2000: 550), who pointed out that the expectation for anonymity during the research process creates additional ethical challenges, such as when participants fear that they will be disconnected from ‘their histories and geographies’.

Symbolic immortality and memorialization

The desire for memorialization and symbolic immortality was the first theme to emerge in the request for real names. Symbolic immortality is related to Becker’s (1973, 2007) seminal work on the denial of death, which proposed that human culture is essentially an intricate defence system against our species’ unique awareness of mortality (Becker, 2007). Becker argued that a fundamental duality in human life exists between the physical world and the human world of meaning. Hence, people are routinely engaged in an ‘immortality project’ to create something heroic and/or eternal through our symbolic selves (Becker, 2007). Lifton and Olson (1974) extended on these ideas with his theory on symbolic immortality, referring to the fundamental and universal human need to preserve life after death via symbolic means. The literature on symbolic immortality tends to focus primarily on individuals’ consciousness of their own mortality and the ways in which they can leave a lasting legacy; the knowledge of leaving something of the self behind after death (e.g. a plaque on a public bench, a published book, a scholarship in one’s name etc.) tends to alleviate death anxiety (Drolet, 1990).

The first participant who asked for real names to be used was bereaved by the suicide of her 15-year-old daughter and was seeking symbolic immortality, meaning-making and memorialization through the research process. Klass (1993) carried out an extensive ethnographic study with parents who had suffered the death of a child, and examined the various ways in which these parents found solace in their continuing grief. Klass (1993) observed that by continuing interaction with the inner representations of their dead child via memory, linking objects and religious devotion, bereaved parents found solace in the sense of symbolic immortality that these interactions provided. Symbolic immortality and memorialization are often entangled with the meaning-making process in bereavement, as was the case with a number of my participants. Grieving individuals struggle to reconstruct a world of meaning after the death of a loved one, especially when the death is extremely traumatic, unexpected or violent (Neimeyer, 2002). In order to deal with these difficult transitions, people reorganize their experiences in narrative form to construct accounts that make sense of the experience by fitting them into a meaningful narrative plot structure (Neimeyer, 2002). A number of participants stated that the research interview was extremely helpful in this process, and moreover, when they were able to use their own or loved one’s real names in the research, the meaning-making or healing process was enhanced for them.

Openness: Death and dying

The desire for openness regarding death and bereavement was another reason given by participants for wanting to use real names. This hope for more openness in regard to issues relating to death and dying was tied to the theme of many participants feeling they should not need a pseudonym because their narrative was nothing to feel ashamed of. There is a proliferation of literature on the perceived importance of openness when dealing with thanatological matters (see, for example, Gorer, 1955; Jacobsen, 2013; Jalland, 2013; Walter, 1996). Recently, this has expanded to the public domain, for instance with some popular venues inviting death-centred discourse in ‘death cafés’ (and related menus) (Patterson and Hazelwood, 2014). Schafer (2014: 2) argues that ‘openness’ is implicitly associated with ‘honesty’ and ‘authenticity’, which leads to a more ‘therapeutic’ form of bereavement practice and the ‘natural expression of emotion’. By contrast, not being ‘open’ about death and grief is associated with ‘unhealthy’ grief and bereavement practices (Schafer, 2014: 2). Participants in the original study had clearly noticed these broader narratives relating to death and openness, and many related their reasons for wanting their real names used in this context.

Identity, ownership and respect

Bereaved participants’ desire to use their real names in research differed from the extant literature in anthropology critiquing anonymity. For example, anthropologists May (2010) and van der Geest (2011) argue that ethnographers should identify participants to provide transparency regarding their findings.

Mattingly’s (2005) anthropological work among African American parents caring for children with serious disabilities and illnesses demonstrates the issue of ‘respect’ and anonymity. Parents in her study did not want to be assigned pseudonyms, but instead wished to be identified and have their stories heard and discussed with them. Participants’ reasoning in Mattingly’s (2005) research was that anonymity could be perceived as ‘disrespect’, because those who had already suffered through feelings of invisibility and silencing felt further silenced by being rendered anonymous. Although the issue of respect was not a reason overtly stated by participants in my study for requesting that their real names be used, one woman (Cinnamon) did respond when I asked her how she felt about the protection measures from ethics committees that, ‘I definitely think that people need to be protected, but not by being silenced and pushed over in a corner.’

Cinnamon’s 15-year-old daughter had died from suicide 6 years earlier, and she repeatedly described feeling silenced in her attempts to express grief for her child. In spite of the researcher’s best intentions, therefore, Cinnamon equated the offer of protection through anonymity with yet another example of silencing/marginalization regarding her bereavement. For her, the interviews were an opportunity to have a voice and preserve her daughter’s memory. Anonymization was perceived as disrespectful (see also Mattingly, 2005).

The request for real names and subsequent process

In the course of reviewing the participant information sheet (PIS), consent form and the use of pseudonyms for anonymity with Cinnamon, she requested that her real name, as well as that of her deceased daughter (Emma), be used in any formal write-up of the results. The participant was signing the consent form, which stated that a pseudonym would be given to protect confidentiality, when she said: ‘No, I want our real names used.’ Cinnamon proceeded to articulate her reasons for wanting Emma’s (her deceased daughter) and her own real name used in the context of memorialization and symbolic immortality (Lifton and Olson, 1974). The following excerpt illustrates this:

I invited you to … interview me too. But it’s really about self-serving stuff, immortalizing Em […]. It serves me. Well the theses get written and they get put in a library.

This excerpt also shows how Cinnamon was an active agent in the research ethics process, as Mondada’s (2014) analysis similarly found with participants’ spontaneous questioning of the anonymization process. In that work, Mondada (2014) discovered that participants consciously self-monitored or self-edited their narrative throughout the interview, as they were aware of the anonymizing process to be carried out by the researcher afterwards, so treated the interview with ‘delicacy’.

Cinnamon asked to take part in the present research after learning about the study through friends, and contacted the primary investigator on her own initiative. She was also aware of her motivations to participate in the study (e.g. memorialization of her daughter and an opportunity to express her grief freely), and believed that her particular emotional needs would be met through the research process. The foregoing excerpt demonstrates how Cinnamon was a proactive agent in the study and, as such, someone who could make clear decisions in her own best interests when it came to the question of anonymization. Specifically, Cinnamon was aware that the completed research would eventually be archived in a library as a permanent written record, thereby preserving Emma’s memory and providing her with a palliative sense of symbolic immortality. Other participants in the study rejected the offer of anonymization on similar grounds.

Cinnamon’s unexpected request prompted me to explore the issue of anonymity further in the context of my thesis, and participant responses were illuminating. However, I had to contact the University of Otago Ethics Committee seeking an amendment to my PIS and consent forms to be able to use participants’ real names. As a result, I started using two consent forms at the Committee’s request: the general PIS and original consent form, as well as a separate consent form for those who wanted their real names used. When given the opportunity to have it included, seven participants requested that their real names be used, two expressed no preference (so were given pseudonyms), and another seven asked for anonymity. Explanations given for wanting anonymity included job-related issues (e.g. concerns about an employer or co-worker reading such sensitive material), concern for individuals discussed over the course of the interview, or because they felt that anonymization was standard research practice that they should adhere to. Most participants expressed appreciation at being given the opportunity to choose to use their real names or a pseudonym and, if the latter, to then select their own pseudonyms (as this would help them to know who they were in the write-up). For example, Lynette, who had nursed both her young husband and then her father through protracted cancer deaths, felt that she derived little meaning from a previous study she had taken part in (on funeral arrangements) because she could not recognize her name in the published research. Lynette stated that she would have liked a choice:

Yeah like I say, I don’t remember been given the option at the time … and so consequently it perhaps meant that I got less meaning from the results … sent back to us at the end, because I recognized a comment that I may have said, but I thought oh no it’s Sonya, or it’s not my name, so maybe that wasn’t me. [The researcher] may have told me that he was going to do that, but I probably didn’t register it or didn’t remember it, so … but perhaps if I had of, then I would have remembered. I think this one can just have my actual name though, so I know, yeah, and it’s just the first name.

Lynette’s comments demonstrate how participants often look to the results of research they have taken part in – especially sensitive research such as thanatology – to help them make meaning from an extraordinary or traumatic experience (Neimeyer, 2002). Lynette felt that this opportunity was undermined because, as an anonymized entity given a pseudonym, she could not even recognize who she was in this process, and interpreted this as a loss of identity. Lynette’s comment also suggests that she had difficulty understanding or processing the research ethics issues in the prior study on funeral arrangements, as she talks about ‘not registering’ certain details. This is important for researchers to remember when going over the consent process with prospective participants: what is standard practice and common knowledge for researchers may be foreign and/or novel for participants, even when lay language is used. Participants need plenty of time and, in some cases (such as with grieving participants or those easily distracted), a certain amount of repetition or checking to ensure comprehension.

Key themes in real name requests

Memorialization and meaning-making

As discussed in the previous section, Cinnamon was the first participant I interviewed in my study, and requested that real names be used for her and her deceased daughter Emma. In replying to the broad question on how she found the research process itself (on suicide among young Maori in Aotearoa/New Zealand), Cinnamon described her hopes for memorialization and why it was important for her to make meaning in a way that might be helpful to others:

I feel like there was a real mutuality around that (the interview with Sandy on suicide among young Maori) actually. For me, I guess the key-driving thing around having the interview with Sandy was around immortalizing Emma in another way. She will be written in a thesis, her name will be there. I’m not going to have grandchildren from Emma, so it’s a way for her to be marked. I think that’s really important, and hopefully helpful for other people. I want her death to have some meaning too. I mean her life had a lot of meaning to me and I want to transform her death into something meaningful. Useful meaningful. It was very meaningful obviously, she made a really big statement, hanging herself … So yeah, that’s what it’s about for me. It’s to immortalize her … So there’s two opportunities for people to know something of my daughter. And three now, yeah, which is great. That’s what I want, because that’s the best that I can have.

Cinnamon relates the experience of being able to immortalize Emma, and to have people know something about her deceased daughter, to the fact that she will never have grandchildren through Emma. Cinnamon poignantly notes that this form of symbolic immortality and memorialization is now ‘the best that she can have’, which is a comment that resonates with Klass’s (1993) work on parents bereaved by the death of a child. All of Klass’s (1993) participants found a way to ensure that the memory of their child lived on in some form, either through art and craft, memorialization days with balloons released into the sky, or writing. For Cinnamon, knowing that Emma’s name and memory will be preserved in writing – writing that is intended to prevent suicide and therefore the ‘useful’ meaning that Cinnamon wants – is, in her words, an important ‘transformation’ of the traumatic loss. The transformative process of grief into suicide-prevention research lends a new meaning to Cinnamon’s grief narrative and her daughter’s death. Having Emma and Cinnamon’s real names used in this process was key for Cinnamon because memorialization was tied to the meaning-making process.

Another participant, Donna, whose baby died from cot death, also felt that using real names would have a particular kind of power related to truth and a declaration of grief. Transparency, truth and openness were all common themes in Donna’s interview. When asked about her thoughts on the use of anonymity in research interviews, Donna replied:

I think real names, that would be very powerful. I would be very happy for my real name and my son’s (Peter) real name to be used.

After being told that the use of real names traditionally went against research ethics guidelines because anonymity is supposed to protect confidentiality, Donna framed her reflection on this in the context of being open about grief, and likened the use of real names to public death notices (memorialization):

Well I think the ethics committees are excellent watch dogs, they’re very important, but I think they underestimate the power of truth, and the power of declaring grief, and of declaring loss … that’s why we have the names on head stones, and the notice in the paper. That’s important, that’s all very important. Yeah it is powerful stuff.

Donna’s statement also refers to the importance of openness when she discusses ‘declaring grief’. Schafer (2014) argues that this increasing desire for openness in relation to death and grief is connected to the ideal of authenticity in bereavement practices.

Openness on death and dying

Donna was not the only participant to equate the use of real names with openness. Sandra, who was recently bereaved by the death of her father, felt that because she was already open about discussing death it was irrelevant as to whether or not she used her real name in the research write-up:

I suppose because I’ve always been quite open about talking about death with, well my dad in particular who was the one who passed away. From what I see, you’re only using first names anyway, so my real name is fine. It is what it is, so you can’t change things that have happened in the past.

Sandra does note that because only first names are used, it makes participants less identifiable, so perhaps the notion of openness extends only so far with first names. However, Sandra additionally reflects upon the fact that the research is discussing events of the past and these events cannot be changed, highlighting the fact that being identified will not change the death and grief, so one may as well be open.

Relating to the results and write-up

Regarding participants’ appreciation at being given a choice with the use of their real name over a pseudonym, Lynette expressed a desire for the former so that she could relate to the results once they were made available. Lynette returned to this theme later on in our interview when describing the isolation of bereavement. She wanted to know if other bereaved persons in the research felt like she did, but when seeing the results from a prior study she had participated in was not sure if she was reading her own comments or someone else’s. Lynette describes this:

Yeah, I have to say when I received [that] completed project there in the post a little while ago, and I saw direct quotes made from, obviously actual responses, when I read what was said, I thought ‘that sounds like something I would have said’, but that was not my name … but I thought, gosh, that does sound a bit like me, but I couldn’t actually relate to the results of it. Because I thought well was that mine or was that somebody else’s? Because it’s quite possible that somebody else felt the same … not that it’s a biggy, but I thought oh well if mine was used, it would have been nice to recognize it as mine.

Feelings of alienation and isolation are common in bereavement (Neimeyer, 2002), and a number of participants such as Lynette sought therapeutic benefit, not just in sharing their narrative, but also in looking for commonalities with other participants in the write-up as a way of knowing that they are not alone in their experiences of grief. For Lynnette, using her real name was important in being able to distinguish her comments from others who might feel similarly to her.

Self-identity and ownership of words

Heather, who was bereaved by several close family members, also spent a great deal of the interview discussing the need for more openness in relation to death and dying issues, but when discussing anonymity, she framed her answer in terms of self-identity: ‘No I’d rather have my name, I want to be referred to my name for who I am and what it is. I don’t sort of … no I don’t mind if people know exactly who I am. I would find it difficult to think there was a need for another name.’

When prompted to elaborate further on this theme, Heather emphasized that she did not feel the need to be apologetic for her views:

Oh just because that’s who I am. I don’t see the topic as that sensitive. I don’t see it as something that needs anonymity … I’m sure if I was let’s say, a rapist, talking about why I do what I do in a research topic, I would probably want to be anonymous, but I’m talking about stuff that I feel quite genuinely interested in, and that my opinion is my opinion, and if anyone wanted to question my opinion, that’s fine. But I’d rather claim it than have it ascribed to another name.

For Heather, her assessment of whether or not it was safe to use her own name was based subjectively on the sensitivity of the information she was divulging and the consequences of sharing that information. Furthermore, Heather wanted her opinions attached explicitly to her name, so there was a clear sense of desiring ownership of her words and a readiness, even an eagerness, to defend them. Heather’s comments seem to relate to Mattingly’s (2005) work on anonymization and the participant’s perception of disrespect that this can entail. Mattingly’s (2005) participants also wanted to be able to discuss or answer any questions about their responses to her interviews on the subject of African American parents with special needs children.

Janette, whose brother had been murdered, also felt that she should take ownership of her words, but her reasons were related to her occupation. As a journalist, Janette always asks that her interviewees use their real names. Moreover, she felt that if she was prepared to voice her opinions, then she should attach her identity to them. It was clearly important to Janette that she was consistent in the way that she conducted her own career and the integrity that she brought to the research environment. In this case, there was a desire for openness and honesty, similar to what the participant requested of her own interviewees when the tables were turned. Additionally, Janette was aware that her deceased brother’s story was already prevalent in the media. In her view, therefore, she and her family had already been ‘exposed’ when it came to their bereavement, so did not see any reason for being anonymized for a research interview about her grief. Janette said:

Well I am who I am, and if I’m prepared to say it then I should be prepared to sign my name to it, and if you look up and see my brother, you’ll know that we’re everywhere. No, I don’t mind. I’m a journalist by trade, and we have to use people’s real names, so if I can’t practice what I expect other people to do, well shame on me.

Janette’s comment reveals an interesting divide between media and research ethics when it comes to interviews and identification. Similarly to Heather, she mentions shame in her response. This theme of shame was also discussed by Jodie, who underwent a late-term abortion because of severe physical defects in the developing foetus. Jodie felt that she should not have to be anonymized because she had done nothing of a criminal nature – a comment that reflects the participant’s concern that the anonymization process implies moral judgment. Jodie stated:

Well it made no difference because I was only talking about my own personal experiences. So I wasn’t talking about anyone else or other people in the community or naming names. Like there was no criminal kind of action or anything like that. I mean obviously if it was something criminal or it was going to impact on our family financially in some way, I think I would pay more attention to what I signed. But I don’t think I’m going to shame my family in any way or anything, so …

Jodie was more concerned with how her interview and identification would impact on her family, and as she felt that there would be no cost to them, financially or in terms of shaming them, she was happy to use her real name.

These participants chose to use their real names in the research and subsequent write-up, and maintained their decision despite multiple opportunities to change their minds. The following section describes those participants who initially wanted their real names used, but then decided to use nom de plumes instead.

Participants who changed their minds and the false protection of anonymity

Paula’s husband had died at a young age from a long and traumatic illness, and she welcomed the opportunity to share her narrative. On the discussion of pseudonyms, Paula was initially unconcerned about using her real name:

I don’t see a problem (with using my real name). Sometimes if you’re using a pseudonym you might be a bit more open, because you might think that people reading it will link you with that, that is a point, so another name will leave you free to say what you think, that’s a point.

Paula’s response illustrates an important issue regarding participants’ willingness to openly share information if they are using a pseudonym. As other participants alluded, the feeling of empowerment attending the use of real names could prompt greater honesty for some people. Yet Paula provides a few reasons as to why she thinks pseudonyms might encourage openness for some bereaved persons:

I think for people to say what they think, a pseudonym is often better, because there’s a lot of anger involved with death and grief. People wouldn’t really want to say that or show that linked with their real name. Some people are happy to let it out, and other people know that their anger is perhaps misdirected and might think that if I use another name … I don’t know.

After further consideration, Paula decided to use a pseudonym. Although it is unclear if her responses would have been any different had she opted otherwise, as her lengthy interview was rich in depth and memory, and included expressions of anger at how she was treated by some people after the death of her husband.

As mentioned previously, however, whether or not pseudonyms indeed offer the degree of confidentiality and protection that participants may assume is a problematic issue in its own right (Tolich, 2004). The following excerpt from Tallulah, who participated in a Maori suicide study, indicates this problem:

And this town is so small, and it’s so easy to pick up on who’s who, even though names are changed, I could pick up on my nephew instantly.

Tallulah’s and Paula’s comments belie the thorny relationship between confidentiality and anonymity. On the one hand, Paula reveals more than she may have otherwise because she operates on the presumption that her pseudonym renders her anonymous. On the other hand, Tallulah points out that she could easily recognize her nephew’s words in spite of such a nominal mantle of protection. These participants’ comments therefore elucidate broader, more complex issues related to the ethics of anonymity: does anonymity afford participants greater confidentiality, or does it only offer a false sense of security (which can make them vulnerable to a researcher’s exploitation)?

Consider, for example, another participant, Carl, who, like several others in the study, tried to sign the consent sheet without properly reading the forms. As with Tallulah and Paula, Carl requested initially that his real name be used, but then changed his mind over his concern that his employer or colleagues might recognize him. The following excerpt starts with the interviewer pointing out to Carl that he was signing the consent form for his real name to be used, and questioning if that was what he really wanted:

Oh am I, whoops! [Laughter]. Am I happy for my real name to be used … I guess I am. That’s a good question. Probably because I’m not going to say anything that’s too compromising or anything that should be secretive …

See what does that just show you? I didn’t even read the consent form. All I saw was the thing that said signature and I just went sign.

Because I interviewed Carl soon after Paula, I was especially cognizant of the fact that participants might be more open in their responses if a pseudonym were used, so I asked Carl about his views on these issues:

I would only be more happy, you know if you were going to ask me more about examples in people and those sorts of details. I can’t obviously discuss and be more open, if it’s going to be potentially in the thesis. So no, my opinions and things won’t be any different, but maybe some of my examples will be a bit vaguer, if I know you’re going to use my [real] name.

Conclusion

In conclusion, these bereaved participants demonstrate clear and conscious reasons as to why they would prefer to have their real names, and the names of their deceased loved ones used in research. These reasons were often unique to bereavement research, but could also extend to other research themes. Further investigation is required on this matter. Moreover, these participants demonstrated their agency throughout the research process when citing their reasons for wanting real names used, and their reasoning when they changed their mind and felt that a pseudonym would be best.

Carl’s comments demonstrate how participants are often aware of confidentiality issues and if given the opportunity will address these by giving thought to how open they should be, whether they have pseudonyms or not. Moreover, Carl’s response demonstrates how participants frequently sign consent forms without reading them thoroughly, thus not giving truly ‘informed’ consent. Carl was not the only participant to do this – others such as Jodie and Paula had to be reminded to read the PIS or to be prompted to have the form reviewed with them. This raises questions about the dubious practice of relying solely upon a signed document as a veridical measure of the participant’s informed consent. As van den Hoonaard (2003), Bosk and de Vries (2004) and other scholars have pointed out, ethics committees cannot simply assume that paperwork will make all researchers ‘ethical’ (see also Tolich, 2004).

The interview responses from this study also point to a frequent tension arising between the use of anonymizing pseudonyms in sensitive research and the (often incorrect) assumption that participants desire confidentiality. As Mattingly (2005: 455) writes, ‘anonymity can turn to disrespect’. Cinnamon, for instance, actively sought out the opportunity to use her real name and that of her deceased daughter for reasons that she was very much aware of. Because these motivations were tied to her desire to express her grief freely and openly, identifying herself and her daughter (Emma) in this way was salubrious, whereby the use of pseudonyms would have been deleterious to her psychological well-being. From a research ethics perspective, it is generally accepted as unethical to reveal participants’ names (van den Hoonaard, 2003). However, for Cinnamon and other bereaved persons, there may be ethical concerns related to denying them the right to be named. Future research should aim to further tease apart this complex issue.

When weighing whether or not it is appropriate to afford participants a choice in using their real name, it is important to consider several factors, including knowledge of the group dynamics (e.g. do they belong to a particular religious or institutional group whereby the participants’ revelations could put them at risk?), age, mental and emotional state, personal circumstances, and the possibility of readers being able to identify those connected to the participant. Most important, however, is that participants should always have the ability to make a true, informed choice when offered the use of their real names in lieu of pseudonyms. After Cinnamon spontaneously volunteered her wish to use real names, I probed this issue with other participants in an open discussion, whereby the pros and cons of such a choice were examined in free-flowing conversation. This enabled participants plenty of time to think about the subject of anonymity and their personal reasons for deciding whether or not to use a nom de plume for their interviews. As Carl and Paula’s excerpts show, some went on to change their minds about the use of real names.

In addition to the need for further research on the question of forced anonymization and participants’ perception of disrespect (Mattingly, 2005) when denying them the right to use real names, there is also room to investigate other motivations for seeking nominal transparency. Mattingly (2005), for example, found that African American parents with special-needs children wanted their real names used because they were tired of being silenced. Likewise, bereaved participants in my study had a wide variety of reasons for rejecting the offer of pseudonyms, including symbolic immortality, memorialization, the desire for openness on death-related issues, and more. Other groups may well provide additional arguments for choosing real names (or opting for anonymity). Clearly there is a need to take these considerations seriously when it comes to investigators conducting truly ethical research on sensitive subject matters.