Abstract: The paper describes how free association qualitative interviews (HOLLWAY & JEFFERSON 2000), conducted via the Internet with a group of young people with diabetes, revealed the possibilities of viewing the Internet as an arena for field studies.

Drawing upon the fieldwork notion that in order to fully understand and appreciate action from the perspective of the participants, one must get close to and participate in a wide cross-section of everyday activities over an extended period of time (EMERSON, FRETZ & SCHAW 1996), I identified the Internet as a meaningful space in which to meet Danish youth with diabetes. Developing on-line relations with more than 20 young people with diabetes, contributed to a rich, "bottom up" picture of their lived experiences with diabetes.

In the present study "Diabetes a school for life"¹⁾ a group of young people with newly diagnosed diabetes has been studied for two years using participant observation and qualitative face-to-face interviews inspired by the free association narrative approach (HOLLWAY & JEFFERSON 2000). The study is based upon a phenomenological (VAN MANEN 1997) and constructionist (SCHÜTZ 1973, GIDDENS 1996) approach and the aim is to understand how a chronic illness like diabetes is integrated in the everyday life of youth. The original intention was to follow the young people at a local diabetes school and onwards in their private homes for a two-year period. [1]

If at the time when I planned the project in 1998, if anyone had suggested that the Internet was going to play a significant role in the construction of data, I would probably have backed out due to my lack of interest and knowledge in this medium. My attention was drawn towards the Internet during a field study at a weekend seminar for youth with diabetes. Here, the Internet was mentioned several times among the participants in the seminar as a place to gain the newest information on products as well as biomedical scientific progression. This fits well with observations, which I made at a local diabetes school. It was also apparent in several of the interviews that I did with young people with diabetes. One of the first things they did after they had been diagnosed was to search the Internet for information regarding their new life situation. [2]

Inspired by this knowledge I placed a small advertisement in a diabetes site encouraging young people to share on-line their experiences of living with diabetes. This quickly led to contacts with a small group of youth with diabetes, and mainly via these connections, also other young people were recommended by their peers to participate in the study:

By the way I can refer to Peter, who is 21 and also has been diagnosed with insulin dependant diabetes. His address is [e-mail address]

I have just read an article about your study in the latest issue of 'Diabetes'. I think it sounds really exciting, and would therefore like to offer you to contact me—if I can be 'of any use'. I am 24 years old and have had diabetes for 11 years." [4]

Developing on-line relations with more than 20 young people with diabetes, contributed to a rich, "bottom up" picture of their lived experiences with diabetes. [5]

According to MANN and STEWARD (2000) a shared research agenda can give people a feeling of an opportunity of being heard, moreover, they argue that the relationship developed on-line can become strong and personal in a very short time, thus some participants can become very involved in online interviews if they are committed to the subject of the research for personal or social reasons. These observations are supported by this study where I exchanged e-mails with some of the online participants more than 100 times over an 18-month period. [6]

"Being in the field involves placing oneself deliberately in a context of commitment doubly different from the normal one. And as we all know, this act need not involve any travelling at all: it sometimes involves simply a shifting of attention and of sociable connection with one's habitual milieus" (LEDERMAN 1990, p.88).

The traditional anthropological field concept: a specific context, far away in exotic countries, where the fieldworker is a traveller, has here been exchanged with a much more complex and critical notion of both the field and the fieldworker. BURAWOY et al. (2000) note that the ethnographers today have a privileged insight into the lived experience of globalisation and they have developed the concept global ethnography, stressing a need for rethinking the meaning of fieldwork from solitary confinement and from being chained to a specific time and place, towards a more flexible concept adjustable to time and space. Time and space did not confine this study. Most data gathering took place at times when few social scientists usually work officially: late at night or very early mornings, during weekends and holidays. Some of the most intense dialogues were exchanged between the young peoples' home or workplace computers and computers at hotel rooms or Internet cafés around the world where I went to present the study. Young people from all over Denmark, including relatively remote small islands, contacted me, and because of the speed of the Internet medium we were able to make contact and reply to each other often within a few hours. [7]

Not long ago, human interactions could not be imagined outside a specific place and time. As GIDDENS once observed: "All interaction, of course, is situated—it occurs in a particular place, and has a specific duration in time" (1993, p.105). [8]

Today human interactions on the Internet continues to be situated, but in another way. The Internet has become a non-physical space where many people interact across countries and national borders, social class and gender, regarding many different issues of interest and concern. Here it is possible to deal with issues of everyday life as well as matters of great delicacy. It is possible to engage in issues and share one's off-line identity, to stay anonymous and just "lurk", or to develop a completely different identity to act upon. [9]

SHANK and CUNNINGHAM identify three basic types of conversations: monologue, dialogue, and discussion. They argue that Internet communication is like conversation: "Messages tend to be informal, phrased in conversational form, and often engender a great deal of direct interchange" (SHANK & CUNNINGHAM, 1996, p.29). [10]

"Messages are written instead of spoken. Nonverbal, gestural, and articulatory cues, so important in speech are missing. But linguistic models of lecture, dialogue, discussion and even text (the written model of communication) do not capture the dynamics of usage that characterizes Internet communication" (SHANK & CUNNINGHAM, 1996, p.30). [11]

SHANK and CUNNINGHAM argue that Internet communication is a written quasi discussion that has the potential to use the strengths of both conversation and writing, and since the "feel" of it is oral, it has been called "multiloguing" (ibid.) They add that "Understanding a phenomenon such as multilogue requires us to go beyond traditional theories of communication, that focus on the transfer of information" (ibid.). An oral culture is different from a written culture, and the culture of the Internet is different from both. One way of understanding more about what is going on in the e-mail interviews is to look at what kind of clues the participants give about themselves and what kind of responses they receive. For example looking at the initial advertisement that I gave, searching for research participants, I gave the following cues about myself and information about my project: my gender, my social status as a researcher and that my main interest was the everyday life of the young people with diabetes. It is impossible to know what went on in people's minds when they read this, but obviously it made several young people curious enough to contact me. These first responses were very short, with few, but important cues like gender, age, duration of diabetes, and almost always a statement like "I don't know if you can use this "or "I don't know whether you can use me for something", and closing the mails with another invitation to mail back with questions. In my second mail, I was always more personal and appreciative, often opening my response with a "of course you can be of help!" sort of statement. Here I told more about the project and why I found it so important that young people themselves tell their stories. In response I often received a mail with a statement like "what a positive e-mail", or "you seem like a nice person". From this point onwards some started directly writing their stories; others wanted to wait a while until they had more time or were in a better mood. But all, except one, responded eventually. All the mails I received ended by stating that I was welcome to return with further questions. [12]

As a qualitative researcher I look upon myself as a research tool and consequently I have to investigate how I interacted with the research participants and how I co-produced the empirical material. The fact that this was a new research approach within the humanities in Denmark raised some critical issues. The critique fell within two areas: one concerning whether I could be sure about the identities of my informants. How could I be sure that these people really did have diabetes? How could I be sure that they were the people they claimed to be? How could I be sure that I did not only receive mails and answers from a small group of young people with with many personal resources, and in that respect only got an isolated view of diabetes and youth? The other area concerned the ethical and psychological aspects of this kind of research. How could I get the young people to articulate their fears and anxieties without offering more than a virtual ear? Several of my colleagues felt that there should be a health care professional or a psychologist present when sensitive issues like fear of blindness, amputation or feelings of loneliness are raised. And what about the researcher's role: How could I possibly provide the psychological support and what did I do to debrief and what did I do to debrief? [13]

In order to address some of these questions a multidisciplinary audit (MAINZ 1992, SCHWANDT & HALPERN 1988) was conducted.

"Auditing is an evaluation tool for checking quality. It is a procedure for evaluating some process or outcome against an established set of criteria. As a means of providing quality assurance, auditing has applications in several disciplines including, medicine, accounting, and social science inquiry" (SCHWANDT & HALPERN 1988, p.22). [14]

The audit group consisted of professor, social psychologist Thomas LEITHÄUSER from Bremen University; professor, head of the Danish youth research centre CEFU Birgitte SIMONSEN and the following PhD-students: MA in computer science Annegrethe NIELSEN Aalborg University; MA in nursing science Nelli SORENSEN, Roskilde University Centre and psychologist Hannah BOLL, Roskilde University Centre. There was a strong agreement in the group that the data from the study could provide as equally important data as the face to face interviews, due to the depth and quality of the data, and due to the certainty—relatively speaking—about the identity of the research subjects. The audit confirmed the validity (KVALE 1994) of the constructed method and of the data presented. [15]

"Consider the rhythm of e-mail. A written letter unanswered for a month is not so serious, but an e-mail message unanswered for the same time can signal the ending of a relationship" (KOLB in ESS 1996, p.16). In order to discuss the critique of using electronic devices, as I have done in this study, I find it relevant to draw some parallels between the process of e-therapy and e-research. This is mainly due to the experiences produced through the use of the free association interview method I employed. The free association technique is a psychoanalytic concept, which usually refers to the situation where the psychoanalyst asks the client to say the first thing that comes into mind (HOLLWAY & JEFFERSON 2000). In this study I invited the young people to reflect upon what relevant themes and questions they would ask if they were to conduct my study. Following this I encouraged them to address their own questions, often leading to some very personal questions and answers written in a direct tone. I, personally, would have found it ethically difficult to do face to face interviews in these situations/topics. [16]

The interviews generated processes that can be interpreted as therapeutic in the sense that the informants reflected on and verbalised difficult issues in their personal lives. They all seemed to want to do this, even though it was obviously difficult.

"I am very sensitive, it don't take much to make me cry all night. I just don't think I make people aware of how much they hurt me.

I really think it is some good questions you can come up with!!!²⁾ It is difficult to answer, but I really am doing my best " (from the third e-mail from Camilla, 15 years old). [17]

GROHOL (2000) differentiates between real-world psychotherapy relationships and e-therapy relationships, stressing both the similarities and differences. This is also relevant in my research. One of the potential benefits of e-therapy, and I believe of e-research (in the form that I have worked with it) is the offer of the potential of increased confidentiality and privacy, which can mean that people who under different circumstances would not participate in a research study are more likely to do so in this case. There is also the issue of convenience, because informants can read and respond to the researcher when they have the time and energy to do so. [18]

"Research shows that on-line social interactions have a greater incidence of dis-inhibition in on-line communications. This means that clients address the issues of most concern to them early in the therapeutic relationship. Therapeutic rapport is build more quickly as less time is spend skirting potentially embarrassing issues, thoughts, and emotions" (2000, p.8). [19]

This lack of inhibition and ease of building rapport was observed in most of the on-line narratives and replies to questions, which I received from my informants. One example is a mail I recently received as a response to an inquiry about social and family background. The mail started without any greeting or introduction like this:

"My family, well I grew up in X, I can't be more specific, because I lived in many places. When I was 5 years old my father committed suicide; he was a carpenter. My mother was a kitchen assistant, but this spring she will enter a nurse's aide programme. My little brother is 3 years younger than me, he has studied agriculture and works as a farmer and is intending to take more continuing education courses". [20]

The length of the mails varied a lot. Some were short stating facts with few personal comments in between; some were very long extending over several pages. None of the short fact message types of e-mails came from girls, they came from young men, and it was mainly the guys who postponed their answers, sometimes explaining this as a result of a new girlfriend. The mails from the girls came usually within the same day as they had received my mail. The mails were longer, more descriptive and contained more direct emotional and existential issues. Emotions in mails from the young men were expressed in a different fashion, for example this sentence from a young man: "My diabetes doesn't bother me at all, but I hope they will find a cure for this bloody disease one day!" I received another response from a young man who got angry about my very open questioning style: "You are asking about everything!!!" He sent this e-mail to me without signing it. But he responded before I had the chance to get back to him and wrote that he was sorry, and subsequently, he provided his story. [21]

Are there any potential risks about this research method? GROHOL points to the risk of clients getting dependent upon greater contact with their therapist due to the asynchronous and more frequent communication leading to the expectation from the informant that the researcher should respond within a certain time-frame. This only happened once in my study and the background was clearly that I was not aware of the need to formulate a contract about when to begin and end the e-mail exchange. Following that incident I always stressed the timeframe within which I would answer my mails and indicated when I posted my last response. This problem did not occur again. [22]

Another risk could be the lack of assessment and non-verbal cues (including items as verifying gender and age) leading to a potential misunderstanding. This makes online research less well defined than its real world counterpart. In conclusion, GROHOL writes:

"The on-line world is a rich one for psychodynamics, including projection and ad-hoc assumptions. Both the therapists and the client's mood may be important when reading an on-line reply or participation in a chat-room, since the mood may frame the quality and style of response. When there are blanks to be filled in, in a online communication, both parties appear willing and eager to do so with their imaginations and misleading cues" (2000, p.11). [23]

However, I found the psychodynamics of the relationship between myself as an on-line researcher and my respondents were not significantly different from the face-to-face interactions where the subjective well being of both parties also plays a great, and often hidden role, as well. [24]

GOTVED (2000) compares movements in urban societies with movements in cyberspace. She states that online activities are not so very different from the other duties one has during the day. The virtual is a gathering concept for non-physical attached activities in cyberspace, and even though the rough motor functions of the body are disconnected, cyberspace is a room one moves into, acts in and returns from (ibid.). GOTVED suggests that it is possible to analyse human social relations in cyberspace by drawing upon micro sociology, in particular urban sociology. According to her, there are several similarities and metaphoric overlaps between city life and the computer mediated interactional activities. Sociology regarding urban cities deals with, among other things, the navigation between strangers and human interactions based upon the premises of the surface and this, according to GOTVED underlines the forms of representation of the Net and its fusion with the fragmented consciousness of the urban life (ibid.). [25]

Dizzy 11-02-20 21:02 I am Thomas 22 years diabetes helped bibi with the website live in X if you don’t remember

M@ds 11-02-20 21:02 I’m with! I too have made a bit on bibi´s page, I think it’s great with all she is doing…..

M@ds 11-02-20 21:05 X, witch is situated near XX, that lies between XXX and XXXX and that is on XXXXX :-)

Dizzy 11-02-20 21:06 right its because I have to go to Roskilde soon cause bibi is going to interview me

Dizzy 11-02-20 21:08 yeah, she is real nice, I actually believed you too were one of those she interviewed where do you know bibi from?

M@ds 11-02-20 21:10 I don’t remember, I think she found me in a internet forum or something like that

Dizzy 11-02-20 21:12 ohhh okay, I met her a couple of weeks after I was diagnosed with diabetes when I went to the diabetes school she interviewed me there the first time and I told about everything from food to my fear of the illness etc. Since then she has been following me with aprox. ½ year intervals and we have e-mailed regularly

Dizzy 11-02-20 21:13 I have been busy and have not had the time to create a public Internet page at my domain

M@ds 11-02-20 21:13 ok, cause this page is rather strange, I have just registered a .com

M@ds 11-02-20 21:14 I too write with her once in a while which reminds me I owe her a reply on something …. Woops …

Dizzy 11-02-20 21:15 since I got diabetes I think that I sometimes feel TOTALLY exaggerated tired even though my bloodsugars are fine did you feel that way too?

Dizzy 11-02-20 21:16 and my blood sugars are 100% fine, do you think that tiredness just comes out of the blue air?

M@ds 11-02-20 21:17 Jeah, it seems like it, but as mentioned I have been rather busy too. My middle range blood sugar always receive praise when I am at check ups

Dizzy 11-02-20 21:18 me too even though I can feel that my blood sugar has become more sensitive the last 6 months

M@ds 11-02-20 21:20 I take insulin: Morning 0, midday 4-6 yellow, evening 10 yellow, night 10 green. What about you?

Dizzy 11-02-20 21:20 haha I take my insulin by intuition in other words I don’t take anything regular but takes insulin 100% according to when I eat and what I eat

Dizzy 11-02-20 21:22 I take umm I have to say it like this+4 fire units on all doses morning 8, midday 12, evening 10, green 30 I take it at 22 hours

Dizzy 11-02-20 21:22 but it’s very rare that I take my quick working at a exact time

Dizzy 11-02-20 21:24 yes I eat a lot but I am not very big I am only 1.70 m slim, but I am studying computer science and consequently am sitting a lot in front a computer and therefore don’t exercise very much

Dizzy 11-02-20 21:29 when I got diabetes I never thought I would get used to Cola light but now I have eventually succeeded

Dizzy 11-02-20 21:30 ummm would it be all right if I send this conversation to bibi for her project? Only this conversation I mean future ones she won’t get

Dizzy 11-02-20 21:30 I eat candy once a week on Saturday for DKK10,- and that’s all I sin, the rest of the time I stay clean

Dizzy 11-02-20 21:31 she writes about how youth with diabetes communicate and what they talk about and our conversation can show her that diabetes-debate.dk is working

M@ds 11-02-20 21:31 ok, I don’t eat to much of the other things, only if I am offered, but normally I say no thanks

This text was written over about a 30 minutes period followed by about another half hour. [27]

In the presented text two guys with diabetes meet virtually and exchange information about their diagnosis and experiences of participating in the study. The space, where they meet in is different from the city street and from the determining restrictions of a physical room. The space is not directed by architecture but rather by the character of the relation between the two young men. By understanding the urban space as a cognitive form, what GOTVED calls mental urbanisation, the urban becomes a social phenomenon where virtual relations are placed in a context that emphasises the banal everyday (GOTVED 2000, p.208). This is clear in the text where Dizzy presents himself at the same time as he is having a slice of pizza. The two guys chat for a while, exchanging experiences while being part of my study. At some point Dizzy talks about his tiredness, and encouraged by the reply he receives from M@ds, they both start sharing information and experiences of their life with diabetes. At one point M@ds even finds them to be very alike, and this makes Dizzy, after having distanced himself a bit, mail a picture of himself, which M@ds quickly does as well. [28]

The difference between the city and the Internet is based on the possibility of physical bodily representations in the city and the lack of this in space. For some the absence of the physical in cyberspace means the same as the absence of truth. According to GOTVED, statements that overlook the potentials of a type of truth on the Internet stem from the missing presence of a disturbing stigma. With reference to GOFFMAN, GOTVED writes about self-representation on the Net:

"We can present a more or less honest representation to a more or less known audience, but no matter whether we express what we in our hearts believe to be, or we consciously create a misleading picture, both are acts and both can be characterized from the same general system" (2000, p.157, my translation). [29]

In my study I have found the absence of the body and the possibility of anonymity in cyberspace, often to be short lived. My informants, as Dizzy and M@ds here, usually present themselves in great personal and demographic details, sometimes even including pictures. After public response to the project, like an article in a diabetes magazine, I have often received responses from people I have been e-mailing with, telling me how nice they have found it to see that I really am a real person. [30]

Like GOTVED, I believe that representations of self are a construction of a retrospective story, it is never "telling it like it is". This is what HOLLWAY and JEFFERSON (2000) call "the transparent self problem":

"In everyday informal dealings with each other, we do not take each other's accounts at face value, unless we are totally naïve; we question, disagree, bring in counter-examples, interpret, notice hidden agendas. Research is only a more formalised and systematic way of knowing about people, but in the process it seems to have lost much of the subtlety and complexity that we use, often as a matter of course, in everyday knowing. We need to bring some of this everyday subtlety into the research process" (HOLLWAY & JEFFERSON 2000, p.3). [31]

HOLLWAY and JEFFERSON believe that although it is far from transparent, there is a relationship between people's ambiguous representations and their experiences. In this respect, I see no difference between the authenticity of the stories I was told in the face-to-face interview situations and in the on-line narratives. All the young people I have been in contact with via e-mail have at their own initiative given their full name and often where and by whom they are treated for their illness. I would consider that the chance of someone constructing a false identity as a diabetic, with all the details and inside knowledge about the illness, would be very small. [32]

Since ethics is a matter of human relations/interactions, it seems to me that the "Questions of ethics" in research on the Internet depends on whether the interaction via the Internet creates new forms of human relationships that demand new ways of acting ethically. In other words if research in cyberspace is regarded as something new and special, new ethical guidelines should be constructed for its use. If cyberspace is regarded as an extension of existing interaction- and communication research, it should be possible to extend the current ethical practice to virtual space. GOTVED (2000) for example claims that:

"Cyberspace is closely connected to the space of everyday life, and even though the means of expression vary over a broad spectrum, they can at the same time be captured by more or less the same ethical guidelines. Not that we shouldn't relate to the special, but on the contrary, that the nature of the special derives from and is defined in relation to the well known" (2000, p.83). [33]

In this work, my primary ethical considerations had to do with respect for the participants in the study. In the free association narrative approach, they primarily formulated the questions they answered themselves. I promised them anonymity in the project. I always responded to writings like "this is really hard to tell" with a request not to go on if it became too hard (which it never did, because responses always came back explaining to me that even though it was hard, it was good), and I answered the mails I received within 24 hours. All the informants declared that I could contact them anytime for further questions, and none has contacted me with questions or problems. A few send me virtual Christmas cards, and some have my e-mail address on their personal mailing list, meaning that I sometimes receive jokes, small comic strips and so on. [34]

I could not see what went on in the room where the individual young person sat and wrote to me, or what went on in their minds after they send me their e-mails, but I do not consider this any different than my lack of knowledge of what happens when I leave the house of one of my other informants. [35]

Realising that not everybody is on-line or even familiar with the Internet is of course an important point to make. However, I am convinced from this study and the responses I have received from other Internet researchers⁵⁾ that the potentials of the Internet for social research which aim to uncover new aspects of vulnerable and often stigmatised individuals or groups have yet to be discovered.⁶⁾ [36]

Special thanks go to professor Thomas SCHWANDT (Illinois, USA) for constructive and critical comments.

2) This is in response to my question to Camilla: "What kind of person are you then?" <back>

3) Dizzy also participated in the part of the study that took place at the diabetes school. <back>

4) The symbol :-) represents a smiley happy face, other symbols used at the Internet, SMS messages etc. include a sad face :-( or the blinking face ;-). <back>

5) Fore instance at a presentation at an Internet research seminar at Royal Hollway, University of London in December 2001. <back>

6) Look fore instance at this e-mail on a diabetes site for youth (http://www.realitycheck.org.au/Reality_Check.htm), it received nine answers within two days: "Hi everyone, In regards to the diet drinks discussion last week, I have started writing to health food companies (e.g. freedom foods) regarding the manufacturing of diet soft drinks without artificial sweeteners. Maybe if other people wrote too, we might get something happening. Cara." <back>

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Bibi HOLGE-HAZELTON; born in 1961, registered nurse 1986, Master in Nursing Science 1998, PhD candidate at Roskilde University Centre, http://www.ruc.dk, Graduate School of Life Long Learning 1999, http://www.educ.ruc.dk/phd/eng/, expected to complete the dissertation in July 2002.

Holge-Hazelton, Bibi (2002). The Internet: A New Field for Qualitative Inquiry? [36 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 3(2), Art. 15. http://nbn-resolving.de/urn:nbn:de:0114-fqs0202156.

Forum Qualitative Sozialforschung / Forum: Qualitative Social Research (FQS)

ISSN 1438-5627

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