Sunbelt XXXII presentation by Antonio A. Casilli, Sylvan Lemaire, Lise Mounier, Paola Tubaro (18 March 2012)

1. Introduction
Data and methods
Findings
Conclusions
Connectedness and support in online ana-mia
social networks
Antonio A. Casilli1 Sylvan Lemaire2 Lise Mounier2 Paola
Tubaro2 3
1 TELECOM ParisTech and CEM/EHESS, Paris
2 CMH/CNRS, Paris
3 University of Greenwich, London
Sunbelt XXXII, 18 March 2012
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

2. Introduction
Data and methods Understanding ana-mia communities
Findings A social networks approach
Conclusions
The ana-mia Internet phenomenon
”Pro-ana”? Controversial
websites of persons with
anorexia and bulimia
nervosa.
A challenge for medical
discourse or support for
ED sufferers?
Medicine 2.0: from
medical informatics to
autonomous patient
communities.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

3. Introduction
Data and methods Understanding ana-mia communities
Findings A social networks approach
Conclusions
The ana-mia Internet phenomenon
”Pro-ana”? Controversial
websites of persons with
anorexia and bulimia
nervosa.
A challenge for medical
discourse or support for
ED sufferers?
Medicine 2.0: from
medical informatics to
autonomous patient
communities.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

4. Introduction
Data and methods Understanding ana-mia communities
Findings A social networks approach
Conclusions
The ana-mia Internet phenomenon
”Pro-ana”? Controversial
websites of persons with
anorexia and bulimia
nervosa.
A challenge for medical
discourse or support for
ED sufferers?
Medicine 2.0: from
medical informatics to
autonomous patient
communities.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

5. Introduction
Data and methods Understanding ana-mia communities
Findings A social networks approach
Conclusions
Our study ANAMIA
Social networks approach to
“ana-mia” sociability.
Research questions:
RQ1: Is there any displacement
effect between the online and offline
ties of persons with eating disorders?
RQ2: Do online ties offer distinct
sources of support?
RQ3: Does online support-seeking
indicate rejection of professional
healthcare?
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

6. Introduction
Data and methods
Web-based survey
Findings
Conclusions
Interrogating ana-mia subjects
Web-based survey with graphical
ego network applet;
Target users of eating
disorder-related websites, forums,
blogs etc.;
Questions on online and offline
personal networks, and
health-related support network;
Subsequent in-depth interview for a
sub-sample of respondents.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

7. Introduction
Data and methods
Web-based survey
Findings
Conclusions
Questionnaire and network applets
Questionnaire about:
Basic socio-economic indicators;
IT usage;
Health, weight, and body image.
Two real-time visualisation tools to elicit social network ties:
NTK 1: Ties in offline personal network (family, friends,
schoolmates etc.);
NTK 2: Ties in online interactions (email, MSN, forums,
blogs).
NTK 3: which of the named contacts are mobilised for health
support.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

8. Introduction
Data and methods
Web-based survey
Findings
Conclusions
Questionnaire and network applets
Questionnaire about:
Basic socio-economic indicators;
IT usage;
Health, weight, and body image.
Two real-time visualisation tools to elicit social network ties:
NTK 1: Ties in offline personal network (family, friends,
schoolmates etc.);
NTK 2: Ties in online interactions (email, MSN, forums,
blogs).
NTK 3: which of the named contacts are mobilised for health
support.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

9. Introduction
Data and methods
Web-based survey
Findings
Conclusions
Questionnaire and network applets
Questionnaire about:
Basic socio-economic indicators;
IT usage;
Health, weight, and body image.
Two real-time visualisation tools to elicit social network ties:
NTK 1: Ties in offline personal network (family, friends,
schoolmates etc.);
NTK 2: Ties in online interactions (email, MSN, forums,
blogs).
NTK 3: which of the named contacts are mobilised for health
support.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

10. Introduction
Data and methods
Web-based survey
Findings
Conclusions
Some personal networks
Figure: Examples of NTK 1 and NTK 2 ego networks drawn by participants.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

11. Introduction
Data and methods
Web-based survey
Findings
Conclusions
Which of these ties matter for health?
Finally, we randomly allocate respondents to two groups:
1) serious health condition scenario
2) mundane issue scenario
Choose from among the list of contacts already mentioned
(offline and online) + add new names.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

12. Introduction Sample
Data and methods A displacement effect?
Findings When are online ties activated?
Conclusions Do online communities substitute for healthcare?
Sample
136 questionnaires completed in the French ana-mia sphere:
Overwhelmingly females, average age 22, 65% students;
heavy Internet users;
Average BMI 20.24, with 34% underweight; 10% overweight.
Eating disorders: 16% AN; 26% BN; 7% BE; 29% EDNOS;
14% mixed forms.
30% are currently under treatment, 44% were treated in the
past.
22 in-depth interviews, females, 19-28 years old.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

13. Introduction Sample
Data and methods A displacement effect?
Findings When are online ties activated?
Conclusions Do online communities substitute for healthcare?
RQ1: is there a displacement effect?
Figure: Number of alters mentioned in Network 1, Network 2, both Network 1 and Network 2, and introduced in
the scenarios questions.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

14. Introduction Sample
Data and methods A displacement effect?
Findings When are online ties activated?
Conclusions Do online communities substitute for healthcare?
RQ1: is there a displacement effect? (cont.)
No evidence of a ”displacement effect”, or of online ties
replacing sociability in real life;
More than half (56 %) of ties of persons with eating disorders
are offline;
And there is a substantial intersection between the two
networks (12 %), indicating continuity between the online and
offline spheres.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

15. Introduction Sample
Data and methods A displacement effect?
Findings When are online ties activated?
Conclusions Do online communities substitute for healthcare?
RQ2: When are online ties activated?
Figure: Number of alters named in the scenarios questions, and overlap with Network 1 (offline) and Network 2
(online).
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

16. Introduction Sample
Data and methods A displacement effect?
Findings When are online ties activated?
Conclusions Do online communities substitute for healthcare?
RQ2: When are online ties activated? (cont.)
Offline ties are most likely to be activated for health problems;
This is all the more so as problems are serious (60 %);
Online ties are more likely to be activated for minor issues
(33.5 %).
⇒ With major health problems, tendency to seek a wider range of
competencies, sources of information and resources.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

17. Introduction Sample
Data and methods A displacement effect?
Findings When are online ties activated?
Conclusions Do online communities substitute for healthcare?
RQ3: Do online communities substitute for professional
care?
Figure: Choice of offline or online supporters for the two scenario questions, depending on whether the respondent
is or was under treatment.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

18. Introduction Sample
Data and methods A displacement effect?
Findings When are online ties activated?
Conclusions Do online communities substitute for healthcare?
RQ3: Do online communities substitute for professional
care? (cont.)
Those who are not under treatment are more likely to seek
support online, especially for minor issues;
In France, health insurance is universally available: why is
there no treatment in some cases?
patient’s refusal;
unavailable appropriate care (e.g. lack of eating-disorder
services in a rural area).
Interviews suggest the second possibility is more likely.
⇒ Reliance on online ties compensates for deficient healthcare
rather than opposing clinical views.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

19. Introduction
Data and methods
Findings
Conclusions
Conclusions
Online ana-mia communities are not a threat to social
cohesion
⇒ They rely and build on existing ties (family, schoolfriends
etc.).
Online ana-mia communities are not an alternative to
Medicine 1.0
⇒ They rather compensate for the limitations of professional
healthcare.
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks

20. Introduction
Data and methods
Findings
Conclusions
Acknowledgements
We thank the French Agency for National
Research (ANR) that has funded the project
ANAMIA under grant agreement n.
ANR-09-ALIA-001.
Contact information:
casilli@telecom-paristech.fr,
p.tubaro@greenwich.ac.uk
Casilli, Lemaire, Mounier, Tubaro Connectedness and support in online ana-mia social networks