Eating disorders in the social web - A personal network approach
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The document discusses the ‘pro-ana’ and ‘pro-mia’ internet movements, which advocate for anorexia and bulimia while providing mutual support. A study is being conducted to understand the impact of participation in these communities on users' health and behavior, focusing on both online and offline social networks. Early findings suggest a significant emphasis on peer support and self-help among participants, challenging traditional views on pro-ana communities.
Eating disorders in the social web - A personal network approach
- 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
- 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