Int J Soc Welfare 2002: 11: 53–65

Medicine on the line? Computer-

mediated social support and
advice for people with diabetes
Loader BD, Muncer S, Burrows R, Pleace N, Nettleton S. Brian D. Loader1, Steve Muncer2, Roger
Medicine on the line? Computer-mediated social support and Burrows3, Nicolas Pleace3, Sarah Nettleton3
advice for people with diabetes 1
Int J Soc Welfare 2002: 11: 53–65 ß Blackwell, 2002. CIRA, University of Teesside, Middlesbrough, UK
2
University of Durham, Stockton-on-Tees, UK
3
The advent of thousands of Usenet groups on the Internet, University of York, Heslington, York, UK
covering a vast range of medical and welfare issues and
ostensibly devoted to the mutual social support of participat-
ing members, has raised the potential for the development of
new forms of ‘virtual’ health care. This article critically
analyses the use by people with diabetes of one such Usenet
group. It seeks to establish, first, the extent to which such a
site provides some demonstrable measure of social support to
its participants. This is approached by undertaking a
structural analysis of the site to identify the extent of usage,
and the nature of supporting interventions using a fivefold
classification (instrumental, informational, esteem and social
companionship and other). Second, the article attempts to
identify any disparity between the lay health-knowledge in
evidence and biomedical opinions proffered by the use of a
panel of consultant diabetiologists. The results of the analysis Key words: Internet, online social support, diabetes, lay
suggest that the diabetes newsgroup provides an example of knowledge, health, self-help
an active forum for largely well-informed participants who
routinely use the media as an aid to the reflexive management B. D. Loader, CIRA, University of Teesside, Middlesbrough TS1
of their medical condition. It also raises the prospect of a 3BA, UK
renegotiated relationship between medical knowledge and lay E-mail: b.d.loader@tees.ac.uk
experience based upon shared learning. Accepted for publication February 8, 2001

This manifestation of computer-mediated social

Introduction
support (CMSS) offers the prospect of significantly
At a time when the efficacy of Western biomedical modified models of health-care maintenance (Loader,
knowledge is subject to growing doubts, and indivi- 1997; Loader, 1999) which challenge the hegemony of
duals are being required to take more responsibility for the clinical gaze. In particular, it acts to question the
the health risks arising from their lifestyles (Giddens, nature of the social relationship between professional
1991; Gabe, Kelleher & Williams, 1994), there can be and client which has been the bedrock of biomedical
little wonder at the enthusiasm expressed by some for practice during the modern period. Typically, the
the supposed beneficial attributes arising from the doctor–patient interaction was to be regarded as the
‘virtual communities’ to be found on the Internet manifestation of an ethical commitment to the welfare
(Rheingold, 1994). A vast global, continuously avail- of the individual, based upon technical knowledge
able, potentially anonymous and largely unregulated acquired through a rigorous education. In recent decades
space where disparate individuals can find mutual this idealised portrayal of a selfless and omniscient
solace and exchange information within a common medical profession has been seriously challenged by the
community of interest. Countless Usenet discussion emergence of a strong self-help movement offering
groups have emerged, which are devoted to a wide patients a complementary or alternative source of social
range of social and health issues (Smith, 1999; support and lay knowledge (Kelleher, 1990; Kelleher,
Burrows, Loader, Pleace, Nettleton & Muncer, 1994). The Internet potentially provides an ideal virtual
2000). Many enable people suffering from a particular space for the emergence and development of such self-
health condition to share their experiences, offer help communities. As Denzin remarks of the US
advice when it is sought, provide emotional and experience, ‘cyberspace and the recovery movement
practical support, as well as receiving benefits in kind. were meant for each other’ (1998: 113).

ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002.
Published by Blackwell Publishers, 108 Cowley Road, Oxford OX4 1JF, UK and 350 Main Street, Malden MA 02148, USA 53
Loader, Muncer, Burrows, Pleace & Nettleton

In late modern society, a complex relationship Research into the potential beneficial properties of
between expert medical advice and lay knowledge and the Internet as a source for social support and health
experience is increasingly forming the basis upon information is still in its infancy (Hardey, 1999). One
which individuals are being required to continuously recent study of the social effects of using the Internet
assess the risks to their health consequent upon their even suggested that use of the Internet ‘is associated
lifestyle behaviour. The authority of professional with declines in social involvement and the
‘medical opinion’ is matched by the legitimacy of psychological well-being that goes with social
the empathetic experience of fellow patients, sufferers involvement’ (Kraut et al., 1998: 1027). Moreover,
and citizens as a source of knowledge to assist the quality of the lay health advice provided has
reflexive judgement (Giddens, 1991: 119–121). This seldom been tested (Eysenbach & Diepgen, 1998).
process is engendered in part by a growing dis- This article documents an analysis of a Usenet self-
satisfaction amongst populations with the validity of help discussion group used by people with diabetes. In
medical knowledge, resulting from continuous particular, it aims first, to critically examine the extent
disagreements amongst the medical profession about to which such a site provides some demonstrable
risks to our health and the aetiology of medical measure of social support to its participants; and,
conditions, but is driven also by the growing demands second, to attempt to identify any perceived difference
for, and generation of, information upon which to take between the quality of the lay health advice proffered
decisions about appropriate individual lifestyle and a biomedical interpretation.
choices.
With online CMSS, the advice provided through
Living with diabetes
face-to-face medical consultation can be checked,
verified and discussed within a virtual forum. The Diabetes, which takes two main forms, is a condition
prescription of drugs by a doctor, for example, can be whereby the amount of insulin produced in the
assessed by using the Internet for its suitability and pancreas is insufficient to control the level of blood
any resulting side effects. A diagnosis can be checked glucose. Where blood sugar levels are too high this can
for accuracy by patients looking up their symptoms. produce hyperglycaemia resulting in a dangerous
Indeed, increasingly ‘netters’ will arrive at a doctor’s coma. Where a dramatic reduction in blood sugar
surgery having already accessed the Internet, and may levels occur this can produce hypoglycaemia,
be more informed about their medical condition and its characterised by sweating, nervousness, weakness
potential remedies than the medical practitioner.1 and a lack of consciousness. Consequently, from a
The importance of virtual self-help groups as biomedical perspective the management of a diabetic
sources of information and guidance is equally condition requires compliance with a régime designed
matched by their potential to provide social support to achieve optimum blood glucose levels.
to their members. In an environment characterised by Several factors act as constraints to its achievement,
dramatic and constant change, the process of ‘risk’ however. First, the amount and type of food eaten has a
assessment for lifestyle behaviour is taken under significant effect. Food with a high carbohydrate content
conditions of increasing uncertainty. The resulting increases blood sugar levels, whilst a high-fibre diet acts
perplexity and stresses of identifying and enacting to slow down the transformation of carbohydrates into
personal health plans may paradoxically become glucose. Second, the usual medication, the
contributory factors to ill-health and well-being. It administration of animal or synthetic insulin, is used
has been argued by some commentators that social to artificially enable the release of energy stored in the
support provided by family, friends or social networks blood glucose. This requires the person with diabetes to
can act as significant buffers to protect people from monitor their blood sugar levels to ascertain their
these pressures (Cohen & Wills, 1985). Indeed, it has appropriate insulin intake. Whilst insulin treatment can
been suggested that stress levels may actually rise in effectively achieve optimum blood glucose levels, its
situations where the existence of social support is use can also have adverse effects upon the macro-
weak or absent (Taylor & Bloor, 1994). Whilst such vascular system. Last, a combination of a high con-
causation remains contentious within the academic sumption of carbohydrates and a compensatory high
domain (Callaghan & Morrissey, 1993; Cohen, Kaplan intake of insulin is likely to result in weight increase
& Salonen, 1999), the positive effects of CMSS upon through the production of fat. This requires exercise to
health outcomes and psychological well-being be introduced as a component of the diabetic régime.
continue to be proclaimed (Finn, 1999). From the biomedical perspective, the quality of life
of people with diabetes can be significantly influenced
1 At its most extreme this challenge to medical authority may by the maintenance of an equilibrium between blood
also became a common aspect of litigation and grievance glucose, blood pressure, serum cholesterol, ideal body
procedures. weight, a healthy diet and sensible exercise, which can

54 ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002
 Computer-mediated social support

all minimise the risk of diabetic complications. They for example, suggested that ‘food is felt to remain
consequently represent a group who are especially within a personal and social domain, not a medical one
subject to personal risk analysis and the need to make . . . Thus lifestyle advice, as apposed to the more
appropriate ‘life plans’ (Giddens, 1991) according to technical medication, is seen as more legitimately
the ‘education’ and advice they receive from medical open for review’ (1997: 198). These factors contend
practitioners. Diabetes has therefore come to be that much medical advice provided to people with
regarded as a ‘lifestyle’ condition whose management diabetes is perceived as contested, subject to
is increasingly to be conducted through self-care. As individual evaluation and open to shared alternative
Cohn remarks, ‘health now calls for effort and experiences. The source for such a shared experiential
discipline, and is presented as a means for self- dialogue is less likely to be the clinical consulting
realisation and salvation, placing the individual not room but may instead be found in the informal
only under the gaze of biomedicine, but also within its networks emerging on the Internet.
moral framework’ (1997: 194). The compliance with a
strict medical régime not only is good for the
The Usenet and newsgroups
beneficiary but ought to be adhered to as a matter of
individual responsibility and duty. Information and advice for people with diabetes has
Whilst this self-care approach acknowledges a become increasingly available on the Internet in recent
broader ecological understanding of the relationship years. Several websites have been established by
between diabetes and appropriate treatment, it is still diabetes associations, such as the British Diabetic
primarily physiological in its orientation. In particular, Association (www.diabetes.org.uk), The Canadian
it continues to overlook the complex social and Diabetes Association (www.diabetes.ca) and The
economic milieux that influence behaviour, lifestyle American Diabetes Association (www.diabetes.org),
choices and personal risk assessment. Drummond and which offer professional views and reports. But the
Mason (1990), for example, in their study of people Internet also provides various forums for the exchange
with diabetes living in socio-economically of lay opinion and mutual deliberations based upon
disadvantaged areas of Dundee, suggested that non- personal experience. Usenet in particular offers the
compliance with diabetic régimes was often due to opportunity for communities of interest to establish
conflicting perceptions of their condition to that of their own newsgroups. These are globally dispersed
their practitioners. ‘The constraints recognised by networks of computer users who communicate with
[patients] as imperative are more diverse than those each other by means of electronic-mail. The Usenet is
recognised by practitioners and include family now estimated to contain more than 15,000 news-
relationships, self-image, and emotional equilibrium. groups, with 20,000 people posting 300,000 messages
Each of these can become actively instrumental in on an average day (Smith, 1999). Furthermore, it has
dictating the course of diabetes self-management’ been suggested that there are some 20 passive readers
(Drummond & Mason, 1990: 46). for every active participant (Kollock & Smith, 1996;
In considering the potential value of CMSS for Smith, 1999), which dramatically increases the
people with diabetes, it is thus necessary to consider potential influence of the Usenet.
the nature and possible limitations of the clinical Unlike mailbase systems, which are generally
consultation for the self-management of their concerned only with the dissemination of information,
condition. At least three aspects of this interaction newsgroups offer a greater opportunity for social
are important in this regard. First, is the possible moral interaction through structured discussion around topics.
imperative of the advice proffered through the In a newsgroup, messages are posted electronically to a
‘education’ process. As Cohn identifies, ‘whilst this discussion group system, which organises them into
action is located within the current philosophy of discursive threads under a topic heading. It is thereby
empowerment it effectively denies reciprocity in possible to enter a newsgroup, view the topics under
dialogue, and instead transfers not only information discussion, and either read the debate or make a
but also obligation’ (1997: 197). As such it risks contribution to the dialogue. Exchanges are asyn-
inviting ill-considered negative judgement on those chronous, with postings being made to the newsgroup
who fail to adhere to their régime. Second, such at any time. Moreover, after a period of time the
medical advice is likely to be filtered by people with discussion topics may be archived for future reference
diabetes who do not believe that practitioners share and thereby provide a shared public resource.
their perspective or experience of actually living with
the condition (Drummond & Mason, 1990). Last, the
The study
information provided on diet, exercise and other
lifestyle choices can be regarded in some cases as an The focus for our research was a newsgroup used by
infringement upon personal behaviour. Cohn’s study, people with diabetes and which formed the basis for a

ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002 55
Loader, Muncer, Burrows, Pleace & Nettleton

time-slice investigation into the nature of the social aspect of life. As Cohen and Wills observe, ‘although
support exhibited and of the information exchanged. support functions can be distinguished conceptually, in
Interactions from the diabetes newsgroup were naturalistic settings they are not usually independent’
selected from a week in the early part of 1998. An (1985: 313). This is also true for the postings we
attempt was made to log all interactions that took examined whereby information messages could be coded
place during this period2 and the data was analysed as social companionship, and self-esteem support.3
first for indices of social support and second as an
evidenced-based evaluation of the quality of informa-
Social companionship support
tion provided.
The potential for anonymous interaction offers the
opportunity for people to discuss difficult or
Social support structures embarrassing issues in a non-threatening environment.
The posts from a Usenet newsgroup contain a header, As Hardey remarks, it ‘is a very different venue from
which gives the subject of the message, the user name, the consulting room’ (1999: 830). It is fairly common
email address and the date and time at which a in newsgroups, for example, for participants to adopt
message was posted. The sample of postings we nicknames in order to disguise their identity. Danet
analysed contained 149 different topics or threads Ruedenberg-Wright and Rosenbaum-Tamari (1997)
(chains of interrelated messages). In total 622 have noted that nicknames help to provide the
messages were posted, giving an average message- ‘playfulness’, which they believe is an essential
per-thread ratio of just over 4 (4.17). The Usenet feature of some computer-mediated communication.
average is four messages per post (Smith, 1999). These For the most part however, the reverse appears to be
messages were posted by 238 posters, giving an true for the diabetes group we investigated, with most
average message-to-poster ratio of 2.61. Whilst this posters using initial and surname or first name and
group is less active than some other support groups surname. Perhaps this is why the diabetes group seems
that have been examined (Muncer et al., 2000), it is from the numbers above to have a less dense core of
more active than many newsgroups. Smith (1999) for frequent posters. It is also likely that their postings will
example, found that 42% of newsgroups he studied be less intimate and less concerned with social
had fewer than 100 messages in a ten-week period. It companionship.
also suggests that participants have some loyalty to the The number of threads that started as humorous or
group, in that there are some frequent posters. became humorous (see Rafaeli & Sudweeks, 1997)
Following Cohen and Wills’ (1985) fourfold and the number of threads with a sexual theme were
classification of stress buffers, the diabetes threads were also noteworthy
coded according to the type of social support given.
20,000 injections and, counting.
These were social companionship, esteem, instrumental
I'm trying to say `just say no to drugs' but my
and informational. A fifth category was added to include
doctor won't let me.
postings characterised by rudeness and intimidation. In
I dumped my doctor . . . poor man . . . Type I for
face-to-face interactions, social companionship is
27 years.
defined as spending time with others in leisure and
recreational activities. Here we coded social chit-chat, Only ten of the diabetes threads were coded as
and any message that indicated a sense of belonging, as being related to social companionship and were
social companionship. Esteem support is provided by contributed to by 19 posters. The largest thread dealt
telling people they are important and accepted for their with the television programme, X-Files, and involved
own worth (Wills, 1985). The posts we have included in a discussion of the unlikely way in which people with
this section include both emotional support for people in diabetes are portrayed by the media. This provoked
crisis and posts telling people how good they are. comments from others and some humorous reflections
Instrumental support is sometimes called tangible or on other portrayals.
material support and deals with the provision of goods
and services to meet a need. Informational support is
sometimes called advice and cognitive guidance, and 3 Examples will be given by thread. The only changes that are
here we code any posts that give information on any made are in the names of the people posting which we have
not used, and any names referred to in the post. Some of the
header names have also been changed to make identification
less likely. Emotions and other typographical features have
2 It should be noted that some posts may not have been been left where possible; however, please note that the posts
included due to the vagaries of the search engines that have do not appear in italics on screen. Posters have also been
been used. We are, therefore, not making strong claims about given an identifying number which appears in bold after the
the absolute accuracy of the numbers of posts, posters and post. The same number is used to identify posters on the
threads but rather that our results can be taken as indicative. network of posting connections on the diabetes group.

56 ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002
 Computer-mediated social support

Fiction Strikes Again! I knew I had this in my files somewhere . . .

I love the `X-Files' Cobbled together from posts to the children's
Saw one last night. I don't know if it's new or a literature newsgroup:
re-run. ``The Gift of the Pirate Queen'' by Patricia
Anyway, the bad guy was suffering from Reilly Giff (sibling of main character is
HYPOglycemia and he was heading for a coma. diabetic)
So, someone burgled a pharmacy and stole, get Ð
this, 200 UNITS of Insulin (and some syringes). Another diabetes book is ``Don't Call Me
Then, when they get back to the basement Sugarbaby!'' by Dorothy Joan Harris, published
Where they're having a confrontation, one of by Scholastic Canada.
the FBI folks loaded the syringe. Ð
Now, how does one steal 200 units ? Where do you Then there is ``Sugar Isn't Everything'' by
put it (them?)? Willo Davis Robert, published by Aladdin Books
123 (Macmillan) which would be for older
elementary kids.
Re: Fiction Strikes Again ! Ð
>I love the `X-Files' We also have Grilled Cheese at 4 o'clock in the
>Saw one last night. I don't know if it's new or Morning. It is a story of a boy who is newly
a re-run. diagnosed (with Diabetes).
>Anyway, the bad guy was suffering from Ð
HYPOglycemia and he was And if you want to include books on things like
>heading for a coma. So, someone burgled a diabetes, there is ``Kiss The Candy Days
pharmacy and stole, get Goodbye''.
>this, 200 UNITS of Insulin (and some Ð
syringes). Then, when they >Also, does anyone know of the specific titles/
And Scully is supposed to be a doctor... I characters in the
haven't seen that one by the way >Babysitter's club series that deal with
5 diabetes, or in the Sweet
>Valley High that deal with Deafness? I'd like
Re: Fiction Strikes Again ! to have a section on
>I love the `X-Files' >series books/popular children's fiction in
>Saw one last night. I don't know if it's new or the list.
a re-run.
The character with diabetes is Stacey. Her
>Anyway, the bad guy was suffering from
diabetes is referenced in just about every
HYPOglycemia and he was heading
book, as a part of her character, as well as
> for a coma. So, someone burgled a pharmacy and
the fact that she pretty much handles things
stole, get this, 200 UNITS of
very well. (The other babysitters admire her
>Insulin (and some syringes). Then, when they
for handling things so well, and there's
get back to the basement
usually a reference that when one of the
> where they're having a confrontation, one of
characters passes around junk food, she'll
the FBI folks loaded the syringe.
pass around crackers or pretzels for Stacey
>Now, how does one steal 200 units ? Where do you
and Dawn (who just doesn't like junk food).)
put it (them?) ?
In #3, ``The Truth About Stacey'', Stacey tells
her new friends about having diabetes, and some
The use of selective snipping of previous posts gives the
of the storyline revolves around her parents
exchanges more of a feel of synchronised conversation,
wanting her to see different doctors, and her
and provides a reminder of which particular strand of
wanting to see just one (good) doctor, and
the thread is being addressed (Muncer et al., 2000).
spending the rest of her time leading a normal
Rafaeli and Sudweeks (1997) have also noted the
life.
interactivity of messages in a thread and argued that it
In #43, ``Stacey's Emergency'', Stacey's blood
plays an important role as a form of social glue in
sugar goes massively out of whack, and she ends
keeping participants involved. (Please note that from
up having to spend time in the hospital trying
this point on the clipped material will not be repeated in
to adjust her insulin.
the quotations from newsgroups unless it is essential for
(another poster, to newsgroup, has said that
understanding. Layout, spellings, grammar etc. are
Stacey has a very strange metabolism, which
retained as in the original threads).

ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002 57
Loader, Muncer, Burrows, Pleace & Nettleton

means she can eat popcorn without counting the dinner tonight ± salad, broiled swordfish,
carbs). sauteed veggies, and maybe I'll have a
The Sugar Mouse by John Branfield. It is a very >piece of sugar-free cherry pie, and try not to
good book. go overboard on that. I nibble on some brie and a
Ð half an onion bun while I' m
``Notes from a Different Drummer: A Guide to >making dinner. (Oh, yeah, I grabbed about nine
Juvenile Fiction Portraying the Handicapped'' Fritos about three hours ago). I check my Bg
by Barbara H. Baskin and Karen H. Harris. It before eating: 220!!! There goes
includes several chapters on the way disabled >dinner.
characters have been portrayed in fiction >What the hell am I doing wrong here? Do I simply
through history, particularly child not eat any carbs for the rest of my life?
characters, and a *long* alphabetical-by- >
author list of books. Each entry includes a >± Depressed and Angry in ***************
suggested age range (young child, mature ****
child, young adolescent, mature adolescent),
a brief description of the disability Re: I am sick of this disease!
portrayed, a plot summary, and a review.
All I can say is: Welcome to the club! ;-/
Unfortunately, my copy only covers the period
from 1945 to 1975. I hope this book has been, or Really what you have described above doesn't
will be, updated. sound strange. I've been type I since 1973 and
this sounds like a frequent routine for me! I
(The constantly growing books about children
also get depressed due to the unpredicable
with disabilities list is online at http://
nature of this disorder. It's not really all
www.math.ttu.edu/~dmettler/booklist.html-
that unpredictable but it seems that way
Many thanks to everyone who has contributed
sometimes.
suggestions to this list!!)
I suggest that the Fritos are what did it. You
Best wishes, and happy reading
are watching carbs but are you watching the
16
glycemic index of foods? for example; ice cream
It is noticeable that the diabetes postings are fairly will not elevate your bg as fast as bread will!
serious and likely to be on topic; one of the other
Do a search on the web for glycemic index and
social companionship threads was related to sharing
carb counting - I'd give you the URL but my
recipes, particularly those that were good for diabetics.
Netscrape has been crashing all night!'
In all but two cases the threads that were coded as
good luck!
social companionship for the diabetic group could
15
probably have been coded as informational. The
exception was a thread in which the poster wanted to
Re: I am sick of this disease!
contact diabetic scuba divers for joint diving trips and
Boy, I am sick of it, too! Your words could have
a thread about longevity and the advantages of sex and
been mine almost exactly. We all get really
chocolate.
depressed over it from time to time. And some of
us, like me, get really angry about it, too. For
Self-esteem support myself, I can't think of `controlling'
diabetes ... it controls *me*. It controls what
Nineteen threads were coded as self-esteem for the
I eat, when I eat, when I exercise and for how
diabetes group, with the majority also being coded as
long. So I think of it as `adjusting' to my
informational as well. These contained information
diabetes.
and advice as well as more friendly encouragement
(But how I hate this damn disease!)
and attempts to bolster the poster’s spirits.
Hang in!
Re: I am sick of this disease! 207
>I've been a type II for a year, taking 1500-
2000 mg of Glucophage a day, and my last HgA1c Re: I am sick of this disease!
was 6.9. This morning I ran 2.6 Tell your doctor that you want to eat Normal and
>miles at a 7 min. mile clip, like I do six days a see if he can up your meds so you can eat more
week. The only carbs I had all day was a thick carbs. I had to tell my doctor I wanted to go on
piece of homemade bread with insulin to get better control or he wouldn't
>lunch, maybe 50g six hours ago. I'm making have put me on it. You are supposed to be able to

58 ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002
 Computer-mediated social support

eat as the food pyramid shows. lovely kids 1 of which our 16 mth old son was
URL:http://www.eatright.org/gifs/mcpyrd.gif diagnosed diabetic only last Friday. He was
sincerly,yours very ill, but has recovered very well - he is now
25 back home and we have been doing the blood tests
and have started to inject insulin etc.
Re: I am sick of this disease!
My wife and I would very much appreciate it if
Hi there! I know how you feel because I was there
someone with similar type experiences to us
before! I am a type II ... about 12 months now.
would contact us by email - we feel quite
Some of us will have to curb taking excess amounts
isolated, confused, guilty - a whole range of
of carbo in order to stay well and in particular
emotions...
if one has passed the age of 50 years. You did not
say how old you are. Previously I was a glut! I Please contact us, we would be very interested
love eating chocolates, cakes, ice-cream in to learn from your
abundance daily until the day the doctor said my findings.
bG level was too high and after further tests it Kind regards,
was confirmed that I am on the threshold of Type 23
II diabetes. Diabetes also ran in my family and I
chose to ignore this thinking that since I live an Re: Baby Diabetes
active life I should be able to burn off all Hi 23
excess carbohydrates consumed. How wrong I was! Hang in there with your 16 month old son! I was
To-day I live strictly on very low carbo diet with diagnosed at 18 months, after almost 6 months of
plenty of green veges, beans, pears, apples and going from doctor to doctor ... over 59 years
oranges. I refrain from taking any food stuffs ago.
that contain sugar (this includes fruits, unless He should be able to live *much* longer than I
they are of high fibre variety). I also do brisk have, particularly with the technologies
walking daily for about 5000 meters. To-day by bG available today.
graph is `flat' averaging around 6.5 mmol/l Good luck!
(fasting) and 7.4 mmol/l (after food). I have 24
managed to maintain this levels constantly for
the past ten months. I go on diet six days a week
and leave one day to eat what I like. So far I have
Instrumental support
no problem and I am 65 yrs of age! Previous research has suggested that there is a lower
amount of instrumental than other kinds of support;
Once we get diabetes we must make a concerted
Dunham et al. (1998) found that less than 3% of the
effort to cut down on our sugar intake (in my
postings on a system designed for support of young
case I abstain from sugar TOTALLY) and I do not
mothers involved tangible support. Pleace et al. (2001)
even take sugar substitutes! The only carbo I
found few instances of instrumental support in Internet
have per meal consist of a bowl of unpolished
relay chat and Muncer et al. (2000) also failed to find
rice or noodles (about 50 g). I know only too
examples in their analysis of a depression newsgroup.
well how difficult it is for us to give up our
It is, of course, possible that instrumental help is
favourite foods that is why I indulge myself
sought from newsgroup members by private email,
once a week. I noticed that in my case as long as
rather than a public posting, and there is evidence that
I keep this routine I have no problem. Perhaps
group members do email each other.
you should consult a dietician to work out a
Given this, it is perhaps not surprising that only one
diet suitable to you and adopt it for life! Once
of the threads from the diabetes group was coded as
we get this disease there is no way out, so we
instrumental, and this dealt with someone asking for
have to learn to live with it.
support on a sponsored walk.
With best regards, Cheers!
178
Informational support
Some of the threads were purely offering encourage-
The overwhelming majority of threads were coded as
ment and solace to fellow sufferers, as in the next
informational, there were 138 of them, of which 21
example, which deals with childhood diabetes.
were cross-coded with another category. Four threads
Baby Diabetes were coded as informational and social, eleven as
Hello there, informational and self-esteem, and six as infor-
I'm 29 and from England my wife and I have 2 mational and rudeness. 219 of the 238 posters

ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002 59
Loader, Muncer, Burrows, Pleace & Nettleton

contributed at least one message to the informational Will I start feeling better one my bg levels
items. As this category was so large it was decided that have stabilised?
it required further division into 14 subcategories. The Or is this some sort of depression?
subcategories with more than ten threads are listed in Should I wait a while and see what develops?
order; individual case history, diet-related, mainstream 25
medicine, doctor-related and Internet-related. The
The nicest thing about smacking your head
remaining subcategories in order of number of threads;
against the wall is- the feeling you get when
books or education on diabetes, commercial, policy-
you stop.
related, alternative medicine, travel-related, group-
related, exercise, children’s diabetes and other. Which gets the following reply.
Some of the threads could appear in more than one
25! Welcome to the club! I've been type I for
category. For example, the individual case histories
almost 25
sometimes led to a discussion of mainstream
years and this sounds like me sometimes. I have
medicine, doctor’s behaviour or diet. However, we
a high stress job and guess what? If my bg is far
tried to place most threads in one subcategory where
out
possible. The first example is from the case-history
of the normal range; then you
subcategory.
can just paste my name into the above
About a year ago I was diagnosed as a type 2 description of yourself! I'd bet 9
diabetic as well as having abnormally elevated to 1 that you're problem
Triglyceriders/cholestrol levels. This was is related to the fluctuating bg's. You
controlled via diet and oral medication. probably, like many of us, have some
To cut a long story short - I went off the rails situational depression but the
for a few months and landed up in hospital with fact that you thrive in your high stress job
pancreatitis. tells me that your problems
of late are certainly the Dr Jeckle /
I am now a full blown type 1 insulin diabetic -
Mr hyde syndrome which is caused by fluctuating
using about 40 units a day.
bg's. For a good
I have no problems with that or the injections/
explanation check out the `files'
testing.
section of the DFAN page: http://pages.
My problem is that since being diagnosed, and
prodigy.com/dfan/ Things will probably settle
even a bit before being diagnosed, I became very
down in time. It
short tempered and had a sort of lassitude.
can take years to get the hang of diabetes
Since the initial diagnosis, this got worse,
management. Just do the best
the stress of being diagnosed plus the dramatic
you can and don't let anyone
curtailement of diet was pretty depressing.
lay any guilt trips on you for the times when you
Even in the period when my diabetes was
have to be a little
controlled, I still felt somewhat this way.
human. Good luck!
After this latest incident (been out of 15
hospital for a week now) - I have felt pretty
Many of the threads in the second largest subcategory
drained - the Dr. tells me this is normal after a
of mainstream medicine dealt with the problems of
bout of pancreatitis and I will feel better.
testing and monitoring levels for the management of
Problem is - I seem to lack the will or energy to
diabetes. Some of these had a slight policy-related
get myself into gear, not in the dietary/
tone, as there were many complaints about the cost of
treatment regime, but in day to day life. I am
testing and actions of various drug companies. Posts
snappy, intolerant, irritable and `lazy'. This
are also made about new developments in treatment
is affecting my work and home life - I have a 14
and testing as in the following examples.
month old daughter and a fantastic and
understanding wife, and should be far more full Islet cells, my new best friends
of the `jolly joys of spring'. There has been a little, but not much discussion
I do work in a fairly stressful environment, but about the islet cell implants on this group. I
have always thrived on this and worked well was wondering why that is; it seems like quite a
under pressure, I no longer do so. big news item to me. The thing is, when I try to
Is this a typical reaction to the disease, is it explain it to people (I took basic biology 3
symptomatic and caused by the physiological times in college trying to pass ± I'm no
effects of diabetes? scientist :) I don't think I've heard some of

60 ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002
 Computer-mediated social support

the most relevant facts. Honey, toe rise the dough.

Any hint on substitutes or recipes will be most
I've looked it up on the WWW, on the islet.org
welcome.
website and the ADA website (their explanation
37
was too scientific for me) but I still have
questions. What is the feeling, generally, of
Re: Recipes for Breadmaking at home
doctors about this? How close are they to this?
The carbs from sugar in a normal loaf of bread is
What exactly happened to the people who they
not very significant next to the carbs from
experimented on? I know at least one was off
flour in the recipe. Besides yeast requires
shots for awhile, now he's back at a low dosage.
simple sugars grow and do its thing. It even
Why is this? How low a dosage?
converts some of the sugars to carbon dioxide
Anyway, thanks to anyone who can provide me with and other by products.
more information, or tell me where I can get 38
some. I've been taking shots for 15 years, and
though I'm in pretty good health it'd be nice to Re: Recipes for Breadmaking at home
think I might be able to not take them someday! The yeast has to eat something. The small amount
Thanks, 167 of sugar or honey won't raise the CHO enough to
worry about.
Re: Islet cells, my new best friends 39
Your best bet would be to surf the Insulin-Free
World Foundation at http://www.insulin- Re: Recipes for Breadmaking at home
free.org/ A small amount of sugar is necessary for the
chemical reaction in the breadmaking process.
I just interviewed Deb Butterfield who runs the But you can experiment. Try using less sugar
site and will write my next column for the ADA than the recipe calls for. (But since you
about it. My column is called `About the already know that as a diabetic you are not
Internet' and can be reached via supposed to eat a lot of bread, which is a
http://diabetes.org/internetresources.htm starchy carbohydrate high on the glycemic
168 index, the amount of sugar specified in the
recipe should not affect your bg directly
Re: Islet cells, my new best friends provided, of course, that you DO restrict your
Hi 167!, consumption of bread as a regular part of your
www.transplantresearch.org gives you an diabetic diet.)
indication as to what's instore. It also 13
identifies 2 recipients of encapsulated
islets. Re: Recipes for Breadmaking at home
Don't bother. Sugars are not needed to activate
www.diabetesnet.com/betacl.html offers an
the yeast. If the yeast is fresh and active, or
easy to understand overview of what you want
dried and active, then you will get god results
to know. Hope the info on these sites will
without boosting the yeast action. Mind you, it
assist.
will take longer. I bake bread for the whole
169
family every week. My stepdaughter is diabetic
The third-largest subcategory concerned items that (insulin dependent), and is healthier with my
dealt with diet; these ranged from people asking for stone-ground, 65% wholewheat than with the
and getting recipes, through discussions about the trash from the bakery. I do not use a bread
dangers and benefits of various food groups machine. Just let it sit there and get on with
(aspartame was a popular worry at the time) to its stuff. Knead. Knock back, form, bake. No
detailed advice on individual diets. The following problem.
example comes from a thread that asked for bread- We did have a problem with the rapid-rise,
making recipes. unkneaded 100% wholewheat: Stepd. took two
slices to eat on the train for breakfast as
Recipes for Breadmaking at home
ususal. Got to work, and went hyper at about
Just bought a Breadmaker to prepare at home diet
10:00 AM.
bread.
40
Apparently most of the common recipes require
either sugar, Molases or

ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002 61
Loader, Muncer, Burrows, Pleace & Nettleton

The threads from the doctor-related subcategory were Some of the posts above have mentioned Internet-
mostly related to assessments of the merits and related resources; for example, the Islet cells post.
behaviour of various doctors or types of doctor. One There were some posts which were more directly
thread was specifically related to Dr Weil (a proponent related to the Internet, and these formed the fifth-
of self-healing) and the benefits or not of fasting and, largest subcategory.
therefore, could have been coded as diet-related or
alternative medicine. The thread below is about a Chat groups
comparison between endo’s and GPs. Does anyone know of any support-type chat
groups for family members of diabetics? Any
Re: Are Endo's Good?
info would be greatly appreciated . . . thanks!
In order to comment on your BG problem rather
45
than the doctor problem, we would need to know
more. If you are using H, maybe under that
Re: Chat groups
schedule, some R would help.
Though it's harder for us to work via a 3rd
17
party, Family members are welcome here, ON the
Re: Are Endo's Good? IRC chan's (#diabetes on undernet.org, Try any
>I've heard that Endo's are good at treating undernet server such as washington.dc.
diabetes. Is this true? Well, since diabetes is u s. un de rn et .o rg o r s pr in gf ie ld .m a. us .
one of their specialities, one would HOPE they undernet.org o dallas.tx.us.undernet.org)
are good at treating it! Certainly much better And of course the Compuserve (If you have
than the average GP. access) diabetes forum has a section run by
13 the wife of a type II which is called `Friends
and Family' and is for those who care about
As one might expect, given the contested nature of the
diabetic `others' http://forumsb.csi.com/
causes and treatment of diabetes, doctors are
gvforums/default.asp?SRV=Diabetes
frequently subjected to constructive criticism, as in
For a look see at the forum (NOT! the best way to
the following example.
visit there however but unless you are
ADA diet/Renal diet @compuserve.com the better ways are not open
My doctor claims that a ADA diet is as good for to you)
patients with impaired renal function as it is I'm (numbers given) in the forum... You can NOT
for all diabetics. I disagree±if a diabetic or send e-mail to me from I-net however
any other renal is diagnosed with kidney 5
disease±he or she should be put on a low±protein
diet. But he claims they are the same thing. Re: Chat groups
Anyone have a clue?? Please E-MaIL ME : Though it's harder for us to work via a 3rd
ASAP thanks 10 party, Family members are welcome here,
um, gee, thanks? i've been involved with a type
Re: ADA diet/Renal diet The ADA Diet is
1 for six months (been living with him for
currently a recommended high carbo and low
four). he's not into posting on usenet anymore,
protien diet. I recently confronted my doctors
so i've been reading m.h.d., asking questions,
why I was on the specific diet
researching things on the net, etc. i email him
11
stuff that i think is useful, we talk about
Re: ADA diet/Renal diet stuff i've found out, and he's made a lot of
`If you develop kidney disease, a maximum changes in how he manages his diabetes. his bg
protein intake of .08 gram of protein per is more in control and more importantly, he
kilogram of body weight per day is feels like he has control over this thing now
recommended.' ±Diabetes Forecast instead of it controlling him. he's acting now,
not reacting.
Re: ADA diet/Renal diet
It's not exactly a `high carbo' diet. The ADA i also like to think that i've contributed to
recommends 50-55% of total daily calorie this forum, giving back something of value for
intake to come from CHO, 15-20% from protein, all that I've taken, even though I'm not a
and no more than 30% from fat. Those carbs are diabetic myself.
supposed to come mainly from fruits and
vegetables rather than bread, pasta, rice, or : ON the IRC chan's (#diabetes on undernet.org,
other starches. Try any undernet server

62 ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002
 Computer-mediated social support

: such as washington.dc.us.undernet.org or challenging orthodox medical views and advice. As

springfield.ma.us.undernet.org or we noted earlier, the nature of living with diabetes can
: dallas.tx.us.undernet.org) be highly individualised and require reflexive
judgement on the part of the patient to personal
you can get a random undernet server at
experiences and life chances. Newsgroups cons-
us.undernet.org equently provide an opportunity to share such lay
or eu.undernet.org experiences – both positive and negative – with a
these two servers are a lot easier to remember wider constituency of fellow sufferers. Moreover,
and type in. if you need info on getting on the inasmuch that diabetes constitutes a contested condi-
undernet, i have a page explaining it in step- tion, such a process may facilitate the contribution of
by-step terms. it's aimed at people getting on experiential knowledge to a mutual understanding of
the its aetiology and management.
Clearly the potential for the new medium to provide
The other subcategories had relatively few threads. almost instant up-to-date information and points of
These included advice for provision relating to travel, reference on the treatment and management of
seven threads coded as commercial such as offers for diabetes represents a valuable resource for self-help
diabetic shoes, insulin pumps and a new form of and awareness. However, a significant cause for
sweetener which was rather tactlessly addressed to concern might be the use of such newsgroups by
dieters. Although some of the other informational some participants as a sounding board for as yet
threads had a mild policy tone in that there were untested but potentially threatening remedies and
complaints about the cost of various medical items, only prescriptions (Impicciatore et al., 1997). After all,
six threads were coded as directly policy or politically medical knowledge is at least in principle subject to
related. The books and education subcategory contained peer evaluation and judgement, capable of public
threads either asking or giving information about books refutation and regulated by appropriate authorities.
and non-Internet related education about diabetes. The Furthermore, it is not yet clear what the legal
other subcategories are self-explanatory. It should be implications would be for a doctor providing advice
noted that the exercise subcategory could be larger, as on the Internet to patients she or he has neither seen
some of the threads in the diet section also referred to nor examined (Beecham, 1999).
exercise advice and concerns. A further objective of our analysis of the diabetes
newsgroup therefore attempted to identify whether
there was a perceived gap between the lay information
Other and rudeness
and advice proffered and a more orthodox medical
We found no threads that needed to be coded as other. perspective. For this aspect a panel of four consultant
Only eleven of the threads contained any rudeness, and diabetiologists agreed to evaluate sixty-one informa-
this was extremely mild compared to that found on tional threads that began during our period of
some other newsgroups (Muncer, 2000). investigation. The topics were first categorised accor-
Comparatively, they were also far less heated and ding to the nature of the message and the subject
certainly did not appear to last as long or involve as addressed. The most common messages concerned
many people. Most of the rudeness involved mild diet (16), glycaemic control and blood tests (9), tablets
sarcasm, with little direct swearing. Interestingly, most and insulin (10), and complications (8). Other topics
of the disagreements in the diabetes group were (18) included beta-cell transplantation, use of natural
concerned with arguments over the accuracy of extracts, homeopathy, sexual activity, tri-iodothy-
information. ronine and photo-progestogens. The quality of the
original message or query was evaluated using a
sixfold classification which produced the results
Diabetics as arbiters of their own condition?
shown in Table 1.
We have seen from the preceding section that the
largest proportion of messages on the newsgroup
Table 1. Rating of start messages
during our period of investigation was of ‘information’
postings. Indeed, in comparison with other computer- Category Frequency Label
mediated social support newsgroups, people with A- 4 Excellent
B- 24 Less good, some details
diabetes appear to constitute a well-informed group C- 16 Poor, little detail
(Muncer et al., 2000). Much of the debate taking place D- 17 Vague
was of a technical nature and involved discussion E- 0 Misleading, irrelevant
about drug régimes and diet. Perhaps significantly, F- 0 Incomprehensible
61
these exchanges were also sometimes concerned with

ß Blackwell Publishers Ltd and the International Journal of Social Welfare 2002 63
Loader, Muncer, Burrows, Pleace & Nettleton

Table 2. Rating of replies opportunity for people with diabetes to share and
Category Frequency Label provide support to others with a similar understanding
A- 13 Evidence based, excellent of the social constraints of living a ‘normal’ existence
B- 60 Accepted understanding with such a chronic condition. Rather than a rejection
C- 137 Personal opinion, anecdote of evidenced-based clinical advice, it offers a secure
D- 26 Misleading, irrelevant
E- 1 False space where such information can be assimilated and
F- 5 Possibly dangerous reflexively shaped to inform lifestyle choices – a space
242 where discursive learning about one’s condition can be
undertaken on a more equal basis. Whilst the study
presented here represents a very small percentage of
The original sixty-one messages generated a further
people with diabetes, our contention is that it does
242 responses from 146 contributors. Interestingly, at
nonetheless provide a significant example of the
least four participants could be identified as doctors
potential for such media to move beyond the clinical
and three were relatives of a diabetic. Each of the
gaze. It may be that the challenge for the future is to
responses was graded blind by the panel utilising a
ensure that such self-help networks are regarded as
sixfold classification which produced the results
valuable spaces for social support and greater
shown in Table 2.
understanding of the social conditions of living with
An example of potentially dangerous advice was
diabetes, rather than sites of misinformation that
that exercise requires more (rather than less) injected
should be colonised by medical experts.
insulin.

Acknowledgement
Discussion
The research findings are drawn from a project which
The data presented above provides a picture of a
was funded by the ESRC (award number L132251029)
reasonably active network of people with diabetes,
under the auspices of its Virtual Society? Programme.
who find value in sharing their experiences and lay
Full details of the project can be found on project
knowledge of living with their condition in an
website at http://www.york.ac.uk/res/vcc
informal virtual self-help forum. Many of the features
of computer-mediated interaction that have been noted
before can be clearly witnessed in the online References
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