Introduction                        Data and methods                                  Findings                            ...
Introduction                            Data and methods      Understanding ana-mia communities                           ...
Introduction                            Data and methods      Understanding ana-mia communities                           ...
Introduction                            Data and methods      Understanding ana-mia communities                           ...
Introduction                            Data and methods      Understanding ana-mia communities                           ...
Introduction                            Data and methods                                                  Web-based survey...
Introduction                           Data and methods                                                 Web-based survey  ...
Introduction                           Data and methods                                                 Web-based survey  ...
Introduction                           Data and methods                                                 Web-based survey  ...
Introduction                          Data and methods                                                 Web-based survey   ...
Introduction                            Data and methods                                                  Web-based survey...
Introduction    Sample                          Data and methods      A displacement effect?                               ...
Introduction     Sample                                     Data and methods       A displacement effect?                  ...
Introduction    Sample                           Data and methods      A displacement effect?                              ...
Introduction      Sample                                     Data and methods        A displacement effect?                ...
Introduction    Sample                            Data and methods      A displacement effect?                             ...
Introduction      Sample                                      Data and methods        A displacement effect?               ...
Introduction    Sample                             Data and methods      A displacement effect?                            ...
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Connectedness and support in online ana-mia social networks

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

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Connectedness and support in online ana-mia social networks

  1. 1. Introduction Data and methods Findings Conclusions Connectedness and support in online ana-mia social networksAntonio 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. 2. Introduction Data and methods Understanding ana-mia communities Findings A social networks approach ConclusionsThe 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. 3. Introduction Data and methods Understanding ana-mia communities Findings A social networks approach ConclusionsThe 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. 4. Introduction Data and methods Understanding ana-mia communities Findings A social networks approach ConclusionsThe 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. 5. Introduction Data and methods Understanding ana-mia communities Findings A social networks approach ConclusionsOur 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. 6. Introduction Data and methods Web-based survey Findings ConclusionsInterrogating 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. 7. Introduction Data and methods Web-based survey Findings ConclusionsQuestionnaire 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. 8. Introduction Data and methods Web-based survey Findings ConclusionsQuestionnaire 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. 9. Introduction Data and methods Web-based survey Findings ConclusionsQuestionnaire 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. 10. Introduction Data and methods Web-based survey Findings ConclusionsSome 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. 11. Introduction Data and methods Web-based survey Findings ConclusionsWhich 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. 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. 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. 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. 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. 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. 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 professionalcare? 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. 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 professionalcare? (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. 19. Introduction Data and methods Findings ConclusionsConclusions 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. 20. Introduction Data and methods Findings ConclusionsAcknowledgements 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

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