Communication delivered at the UKSNA 2011 conference, University of Greenwich, London, by Antonio Casilli (Fri July 8, 2011)

1. Introduction
Literature
Empirical approach
Conclusions
Eating disorders in the social web
A personal network approach
Antonio A. Casilli1 Paola Tubaro2 Christèle Fraïssé4
Estelle Masson4 Lise Mounier3 Juliette Rouchier3
1 EHESS Paris
2 University of Greenwich
3 CNRS
4 Université de Brest
7th UKSNA Conference, 8 July 2011
Casilli et al. Eating disorders in the social web

2. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
Outline
1 Introduction
2 Literature
3 Empirical approach
4 Conclusions
Casilli et al. Eating disorders in the social web

3. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
The “pro-ana” and “pro-mia” Internet movement
A controversial
subculture: advocacy for
anorexia and bulimia
nervosa on the web.
Challenges medical and
psychological discourse:
anorexia as a lifestyle.
But also, mutual support
and advice to fellow
sufferers.
Casilli et al. Eating disorders in the social web

4. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
The “pro-ana” and “pro-mia” Internet movement
A controversial
subculture: advocacy for
anorexia and bulimia
nervosa on the web.
Challenges medical and
psychological discourse:
anorexia as a lifestyle.
But also, mutual support
and advice to fellow
sufferers.
Casilli et al. Eating disorders in the social web

5. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
The “pro-ana” and “pro-mia” Internet movement
A controversial
subculture: advocacy for
anorexia and bulimia
nervosa on the web.
Challenges medical and
psychological discourse:
anorexia as a lifestyle.
But also, mutual support
and advice to fellow
sufferers.
Casilli et al. Eating disorders in the social web

6. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
The pro-ana movement as autonomous health practice on
the Internet
From medical informatics
(patient data files, medical
databases)...
...to online patient communities
(forums, wikis, social networking
websites)...
...and to autonomous health
usages (eHealth, apomediation,
electronic resistance networks).
Casilli et al. Eating disorders in the social web

7. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
Pro-ana as a form of networked cooperation
Internet: new sociability for
persons with eating disorders;
Homophilous interactions rather
than isolation;
Forms of social influence may
reinforce disordered behaviours;
But also self-help and referral to
health services;
Intertwined in complex ways
with offline relationships.
Casilli et al. Eating disorders in the social web

8. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
Our questions
Does participation in
pro-ana forums, blogs and
social networks affect
behaviour?
Do online and offline
social ties differ, and do
they differentially affect
behaviour?
How to devise suitable
forms of policy
intervention?
Casilli et al. Eating disorders in the social web

9. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
Our study ANAMIA
Social networks approach
to “ana-mia” sociability.
Map online vs. offline
personal networks of
“ana-mia” website users.
Goal is to understand
effects on health and
eating behaviours.
Casilli et al. Eating disorders in the social web

10. Introduction
Outline
Literature
Motivation
Empirical approach
ANAMIA
Conclusions
ANAMIA in practice
PI: C. Fishler, CNRS Paris;
Funded by the French Agency of
National Research (ANR).
5 teams.
Casilli et al. Eating disorders in the social web

11. Introduction
Literature
Empirical approach
Conclusions
A new role for the SSH in the study of eating behaviours
Before Internet:
Clinical approaches dominant;
SSH counterpointed
development of health sciences
mainstream.
Internet:
60 articles on “ana-mia”
phenomenon (2000-2010);
SSH play a major role in
defining the field;
Health sciences follow suit;
Role of SSH in study of health
with ubiquitous
computer-mediated interactions.
Casilli et al. Eating disorders in the social web

12. Figure: Network of citations. Red = clinical, blue = socio-cultural approaches. Node size is proportional to number
of citations. In Casilli A., Tubaro P., Araya P. Ten years of Ana. Lessons from a transdisciplinary body of literature
on online pro-eating disorder websites. Social Science Information (51(1)), 2012).

13. Figure: Network of citations highlighting the development of the body of literature over a decade. Red = clinical,
blue = socio-cultural approaches. Node size is proportional to number of citations. In Casilli A., Tubaro P., Araya
P. Ten years of Ana. Lessons from a transdisciplinary body of literature on online pro-eating disorder websites.
Social Science Information (51(1)), 2012).

14. Introduction
Literature
Empirical approach
Conclusions
Remaining gaps in knowledge
So far, mostly content analyses; rare active data collections
(surveys, experiments);
No conclusive evidence on the health impact of pro ana/mia
websites;
Web 2.0, online social networking remain to be addressed.
Casilli et al. Eating disorders in the social web

15. Introduction
Literature
Empirical approach
Conclusions
Our contribution
We aim to reach out
ana-mia website users and
question them;
Study is currently in the
field;
Today, we will present our
fieldwork methodology
and some (very
preliminary!) results.
Casilli et al. Eating disorders in the social web

16. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
The challenge of interrogating ana-mia subjects
Ana-mia population is difficult to reach:
Small size;
Vulnerabilities (health risk; underage);
Frequent migrations.
Large quantitative surveys / webcrawling possible only to an
extent;
Need to rely on smaller-scale, purposive samples.
Casilli et al. Eating disorders in the social web

17. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
Our solution
Web-based survey with
participant-aided sociogram
drawing tool;
Target current users of eating
disorder-related websites,
forums, blogs etc.;
Questions on online and offline
personal networks, and
health-related advice network;
Subsequent in-depth interview
for a sub-sample of respondents.
Casilli et al. Eating disorders in the social web

18. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
Questionnaire structure
“Classical” sections with questions on:
Basic socio-economic indicators;
IT usage;
Health, weight, and body image.
Two real-time visualisation tools to elicit social network ties:
Offline ties (family, friends, schoolmates etc.);
Online ties (email, MSN, forums, blogs, SNS etc.); The two
may overlap, in part or in full.
Health advice network: which of the named offline/online
contacts are mobilised for health issues.
Casilli et al. Eating disorders in the social web

19. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
Questionnaire structure
“Classical” sections with questions on:
Basic socio-economic indicators;
IT usage;
Health, weight, and body image.
Two real-time visualisation tools to elicit social network ties:
Offline ties (family, friends, schoolmates etc.);
Online ties (email, MSN, forums, blogs, SNS etc.); The two
may overlap, in part or in full.
Health advice network: which of the named offline/online
contacts are mobilised for health issues.
Casilli et al. Eating disorders in the social web

20. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
Questionnaire structure
“Classical” sections with questions on:
Basic socio-economic indicators;
IT usage;
Health, weight, and body image.
Two real-time visualisation tools to elicit social network ties:
Offline ties (family, friends, schoolmates etc.);
Online ties (email, MSN, forums, blogs, SNS etc.); The two
may overlap, in part or in full.
Health advice network: which of the named offline/online
contacts are mobilised for health issues.
Casilli et al. Eating disorders in the social web

21. Figure: Opening page (French-language version). From http://www.anamia.fr

22. Figure: The first page of the questionnaire. From http://www.anamia.fr

23. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
Ego network mapping
Image not available.
Casilli et al. Eating disorders in the social web

24. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
Which of these ties matter for health?
Finally, we present respondents with a hypothetical case:
For one (randomly selected) group: serious health condition
(go to hospital);
For others: mundane issue (hair loss).
We ask who they would like to speak to;
They choose from among the list of contacts already
mentioned, both offline and online, and may add new names.
Goal is to understand who may affect their health and
nutrition behaviours;
Key issue is relative importance of online vs. offline ties.
Casilli et al. Eating disorders in the social web

25. Image not available.

26. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
Response so far
94 questionnaires completed:
Overwhelmingly females, average age 23 (range 17-37), 60%
students;
21 hours/week Internet use on average;
Average BMI 20.24, with 34% underweight; 10% overweight.
Eating disorders: 15% AN; 25% BN; 6% BE; 30% EDNOS;
15% mixed forms.
30% are currently under treatment, 44% were treated in the
past.
15 in-depth interviews, females, 19-28 years old.
Casilli et al. Eating disorders in the social web

27. Introduction
Literature Web-based survey method
Empirical approach Preliminary results
Conclusions
Key findings
Challenging the very notion of pro-ana –emphasis is rather on
need for peer support, self-help.
Offline network size larger than online
⇒ Online networks: mainly elective communities.
Mainstream social networking services (Facebook)as a “social
clearing house”.
Casilli et al. Eating disorders in the social web

28. Introduction
Literature
Empirical approach
Conclusions
Conclusions
We hope to gain insight into motivations and behaviours of
ana-mia subjects;
To understand impact of online social interactions on health,
and differerence from non-web interactions;
To detect social roles and social structures in pro-ana
community for better targeting of public policies and tayloring
of communication campaigns;
Media multiplexity; online/offline multiplexity.
Possible extensions of the methodology to other health issues!
Casilli et al. Eating disorders in the social web

29. Introduction
Literature
Empirical approach
Conclusions
Thank you!
Antonio A. Casilli, antonio.casilli@ehess.fr
ANAMIA team, coordination@anamia.fr
Casilli et al. Eating disorders in the social web