Eating disorders in the social web - A personal network approach

IntroductionLiterature

Empirical approachConclusions

Eating disorders in the social webA personal network approach

Antonio A. Casilli1 Paola Tubaro2 Christèle Fraïssé4Estelle Masson4 Lise Mounier3 Juliette Rouchier3

1EHESS Paris

2University of Greenwich

3CNRS

4Université de Brest

7th UKSNA Conference, 8 July 2011

Casilli et al. Eating disorders in the social web



OutlineMotivationANAMIA

Outline

1 Introduction

2 Literature

3 Empirical approach

4 Conclusions





The “pro-ana” and “pro-mia” Internet movement

A controversialsubculture: advocacy foranorexia and bulimianervosa on the web.Challenges medical andpsychological discourse:anorexia as a lifestyle.But also, mutual supportand advice to fellowsufferers.





The pro-ana movement as autonomous health practice onthe Internet

From medical informatics(patient data files, medicaldatabases)......to online patient communities(forums, wikis, social networkingwebsites)......and to autonomous healthusages (eHealth, apomediation,electronic resistance networks).





Pro-ana as a form of networked cooperation

Internet: new sociability forpersons with eating disorders;Homophilous interactions ratherthan isolation;Forms of social influence mayreinforce disordered behaviours;But also self-help and referral tohealth services;Intertwined in complex wayswith offline relationships.





Our questions

Does participation inpro-ana forums, blogs andsocial networks affectbehaviour?Do online and offlinesocial ties differ, and dothey differentially affectbehaviour?How to devise suitableforms of policyintervention?





Our study ANAMIA

Social networks approachto “ana-mia” sociability.Map online vs. offlinepersonal networks of“ana-mia” website users.Goal is to understandeffects on health andeating behaviours.





ANAMIA in practice

PI: C. Fishler, CNRS Paris;Funded by the French Agency ofNational Research (ANR).5 teams.




A new role for the SSH in the study of eating behaviours

Before Internet:Clinical approaches dominant;SSH counterpointeddevelopment of health sciencesmainstream.

Internet:60 articles on “ana-mia”phenomenon (2000-2010);SSH play a major role indefining the field;Health sciences follow suit;Role of SSH in study of healthwith ubiquitouscomputer-mediated interactions.


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

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., ArayaP. Ten years of Ana. Lessons from a transdisciplinary body of literature on online pro-eating disorder websites.Social Science Information (51(1)), 2012).



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/miawebsites;Web 2.0, online social networking remain to be addressed.




Our contribution

We aim to reach outana-mia website users andquestion them;Study is currently in thefield;Today, we will present ourfieldwork methodologyand some (verypreliminary!) results.




Web-based survey methodPreliminary results

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 anextent;Need to rely on smaller-scale, purposive samples.





Our solution

Web-based survey withparticipant-aided sociogramdrawing tool;Target current users of eatingdisorder-related websites,forums, blogs etc.;Questions on online and offlinepersonal networks, andhealth-related advice network;Subsequent in-depth interviewfor a sub-sample of respondents.





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 twomay overlap, in part or in full.

Health advice network: which of the named offline/onlinecontacts are mobilised for health issues.


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

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




Ego network mapping

Image not available.





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 alreadymentioned, both offline and online, and may add new names.

Goal is to understand who may affect their health andnutrition behaviours;Key issue is relative importance of online vs. offline ties.


Image not available.




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 thepast.

15 in-depth interviews, females, 19-28 years old.





Key findings

Challenging the very notion of pro-ana –emphasis is rather onneed for peer support, self-help.Offline network size larger than online⇒ Online networks: mainly elective communities.Mainstream social networking services (Facebook)as a “socialclearing house”.




Conclusions

We hope to gain insight into motivations and behaviours ofana-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-anacommunity for better targeting of public policies and tayloringof communication campaigns;Media multiplexity; online/offline multiplexity.Possible extensions of the methodology to other health issues!




Thank you!

Antonio A. Casilli, [email protected]

ANAMIA team, [email protected]


Eating disorders in the social web - A personal network approach

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