research-article

Public Access

Recovery Amid Pro-Anorexia: Analysis of Recovery in Social Media

Authors:

Stevie Chancellor,

Tanushree Mitra,

Munmun De ChoudhuryAuthors Info & Claims

CHI '16: Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems

Pages 2111 - 2123

https://doi.org/10.1145/2858036.2858246

Published: 07 May 2016 Publication History

Abstract

Online communities can promote illness recovery and improve well-being in the cases of many kinds of illnesses. However, for challenging mental health condition like anorexia, social media harbor both recovery communities as well as those that encourage dangerous behaviors. The effectiveness of such platforms in promoting recovery despite housing both communities is underexplored. Our work begins to fill this gap by developing a statistical framework using survival analysis and situating our results within the cognitive behavioral theory of anorexia. This model identifies content and participation measures that predict the likelihood of recovery. From our dataset of over 68M posts and 10K users that self-identify with anorexia, we find that recovery on Tumblr is protracted - only half of the population is estimated to exhibit signs of recovery after four years. We discuss the effectiveness of social media in improving well-being around anorexia, a unique health challenge, and emergent questions from this line of work.

References

[1]

American Psychiatric Association and others. 2003. Diagnostic and Statistical Manual of Mental Disorders:: DSM-5. ManMag.

[2]

Anna M Bardone-Cone and Kamila M Cass. 2006. Investigating the impact of pro-anorexia websites: A pilot study. European Eating Disorders Review 14, 4 (2006), 256--262.

[3]

Dina LG Borzekowski, Summer Schenk, Jenny L Wilson, and Rebecka Peebles. 2010. e-Ana and e-Mia: A Content Analysis of Pro-Eating Disorder Web Sites. American journal of public health 100, 8 (2010), 1526.

[4]

Hilde Bruch. 1973. Eating disorders: Obesity, anorexia nervosa, and the person within. Vol. 5052. Basic Books.

[5]

Cynthia M Bulik, Nancy D Berkman, Kimberly A Brownley, Jan A Sedway, and Kathleen N Lohr. 2007. Anorexia nervosa treatment: a systematic review of randomized controlled trials. International Journal of Eating Disorders 40, 4 (2007), 310--320.

[6]

Stevie Chancellor, Jessica Pater, Trustin Clear, Eric Gilbert, and Munmun De Choudhury. 2016. #thyghgapp: Instagram Content Moderation and Lexical Variation in Pro-Eating Disorder Communities. In Proceedings of the 2016 Conference on Computer Supported Cooperative Work (CSCW). ACM.

Digital Library

[7]

Cindy Chung and James W Pennebaker. 2007. The psychological functions of function words. Social communication (2007), 343--359.

[8]

TG Clark, MJ Bradburn, SB Love, and DG Altman. 2003. Survival analysis part I: basic concepts and first analyses. British journal of cancer 89, 2 (2003), 232--238.

[9]

David R Cox. 1992. Regression models and life-tables. In Breakthroughs in Statistics. Springer, 527--541.

[10]

Munmun De Choudhury. 2015. Anorexia on Tumblr: A Characterization Study. In Proc. Digital Health.

Digital Library

[11]

Munmun De Choudhury, Scott Counts, Eric Horvitz, and Aaron Hoff. 2014. Characterizing and Predicting Postpartum Depression from Facebook Data. In Proc. CSCW.

Digital Library

[12]

Munmun De Choudhury, Michael Gamon, Scott Counts, and Eric Horvitz. 2013. Predicting depression via social media. In Proc. ICWSM.

[13]

T Emmens and A Phippen. 2010. Evaluating Online Safety Programs. Harvard Berkman Center for Internet and Society.{23 July 2011} (2010).

[14]

Gunther Eysenbach, John Powell, Marina Englesakis, Carlos Rizo, Anita Stern, and others. 2004. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. Bmj 328, 7449 (2004), 1166.

[15]

Christopher G Fairburn, Roz Shafran, and Zafra Cooper. 1999. A cognitive behavioural theory of anorexia nervosa. Behaviour Research and Therapy 37, 1 (1999), 1--13.

[16]

Rachel A Fleming-May and Laura E Miller. 2010. I'm scared to look. But I'm dying to know: Information seeking and sharing on Pro-Ana weblogs. Proc. ASIST 47, 1 (2010), 1--9.

Digital Library

[17]

Nick Fox, Katie Ward, and Alan O'Rourke. 2005. Pro-anorexia, weight-loss drugs and the internet: an "anti-recovery" explanatory model of anorexia. Sociology of Health & Illness 27, 7 (2005), 944--971.

[18]

Jeff Gavin, Karen Rodham, and Helen Poyer. 2008. The presentation of "pro-anorexia" in online group interactions. Qualitative Health Research 18, 3 (2008), 325--333.

[19]

Erving Goffman. 1959. The presentation of self in everyday life. (1959).

[20]

Andrea Grimes, Brian M Landry, and Rebecca E Grinter. 2010. Characteristics of shared health reflections in a local community. In Proceedings of the 2010 ACM conference on Computer supported cooperative work. ACM, 435--444.

Digital Library

[21]

Frank E Harrell. 2001. Regression Modeling Strategies: With Applications to Linear Models, Logistic Regression, and Survival Analysis. Springer.

Digital Library

[22]

Andrea Hartzler and Wanda Pratt. 2011. Managing the personal side of health: how patient expertise differs from the expertise of clinicians. Journal of medical Internet research 13, 3 (2011).

[23]

David B Herzog, David J Dorer, Pamela K Keel, Sherrie E Selwyn, Elizabeth R Ekeblad, Andrea T Flores, Dara N Greenwood, Rebecca A Burwell, and Martin B Keller. 1999. Recovery and relapse in anorexia and bulimia nervosa: a 7.5-year follow-up study. Journal of the American Academy of Child & Adolescent Psychiatry 38, 7 (1999), 829--837.

[24]

Sharlene Hesse-Biber, Patricia Leavy, Courtney E Quinn, and Julia Zoino. 2006. The mass marketing of disordered eating and eating disorders: The social psychology of women, thinness and culture. In Women's studies international forum, Vol. 29. Elsevier, 208--224.

[25]

Hans Wijbrand Hoek. 2006. Incidence, prevalence and mortality of anorexia nervosa and other eating disorders. Current opinion in psychiatry 19, 4 (2006), 389--394.

[26]

Christopher M Homan, Naiji Lu, Xin Tu, Megan C Lytle, and Vincent Silenzio. 2014. Social structure and depression in TrevorSpace. In Proc. CSCW.

Digital Library

[27]

Yan Hong, Ninfa C Pena-Purcell, and Marcia G Ory. 2012. Outcomes of online support and resources for cancer survivors: A systematic literature review. Patient education and counseling 86, 3 (2012), 288--296.

[28]

Mette Terp Høybye, Christoffer Johansen, and Tine Tjørnhøj-Thomsen. 2005. Online interaction. Effects of storytelling in an internet breast cancer support group. Psycho-Oncology 14, 3 (2005), 211--220.

[29]

Jina Huh and Mark S Ackerman. 2012. Collaborative help in chronic disease management: supporting individualized problems. In Proc. CSCW.

Digital Library

[30]

Jina Huh, Leslie S Liu, Tina Neogi, Kori Inkpen, and Wanda Pratt. 2014. Health vlogs as social support for chronic illness management. ACM Transactions on Computer-Human Interaction (TOCHI) 21, 4 (2014), 23.

Digital Library

[31]

Grace J Johnson and Paul J Ambrose. 2006. Neo-tribes: The power and potential of online communities in health care. Commun. ACM 49, 1 (2006), 107--113.

Digital Library

[32]

Adam N Joinson. 2001. Self-disclosure in computer-mediated communication: The role of self-awareness and visual anonymity. European Journal of Social Psychology 31, 2 (2001), 177--192.

[33]

Adrienne S Juarascio, Amber Shoaib, and C Alix Timko. 2010. Pro-eating disorder communities on social networking sites: a content analysis. Eating disorders 18, 5 (2010), 393--407.

[34]

Edward L Kaplan and Paul Meier. 1958. Nonparametric estimation from incomplete observations. Journal of the American statistical association 53, 282 (1958), 457--481.

[35]

John P Klein and Melvin L Moeschberger. 2003. Survival analysis: techniques for censored and truncated data. Springer Science & Business Media.

[36]

David G Kleinbaum. 1998. Survival Analysis, a Self-Learning Text. Biometrical Journal 40, 1 (1998), 107--108.

[37]

Stephen P Lewis and Alexis E Arbuthnott. 2012. Searching for thinspiration: the nature of internet searches for pro-eating disorder websites. Cyberpsychology, Behavior, and Social Networking 15, 4 (2012), 200--204.

[38]

Elizabeth J Lyons, Matthias R Mehl, and James W Pennebaker. 2006. Pro-anorexics and recovering anorexics differ in their linguistic Internet self-presentation. Journal of Psychosomatic Research 60, 3 (2006), 253--256.

[39]

Diana MacLean, Sonal Gupta, Anna Lembke, Christopher Manning, and Jeffrey Heer. 2015. Forum77: An Analysis of an Online Health Forum Dedicated to Addiction Recovery. In Proc. CSCW.

Digital Library

[40]

Lena Mamykina, Andrew D Miller, Elizabeth D Mynatt, and Daniel Greenblatt. 2010. Constructing identities through storytelling in diabetes management. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. ACM, 1203--1212.

Digital Library

[41]

Lena Mamykina, Drashko Nakikj, and Noemie Elhadad. 2015. Collective Sensemaking in Online Health Forums. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems. ACM, 3217--3226.

Digital Library

[42]

Jennifer Mankoff, Kateryna Kuksenok, Sara Kiesler, Jennifer A Rode, and Kelly Waldman. 2011. Competing online viewpoints and models of chronic illness. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. ACM, 589--598.

Digital Library

[43]

Phoenix KH Mo and Neil S Coulson. 2008. Exploring the communication of social support within virtual communities: A content analysis of messages posted to an online HIV/AIDS support group. Cyberpsychology & behavior 11, 3 (2008), 371--374.

[44]

Elizabeth L Murnane and Scott Counts. 2014. Unraveling abstinence and relapse: smoking cessation reflected in social media. In Proc. CHI.

Digital Library

[45]

Mark W Newman, Debra Lauterbach, Sean A Munson, Paul Resnick, and Margaret E Morris. 2011. It's not that I don't have problems, I'm just not putting them on Facebook: challenges and opportunities in using online social networks for health. In Proceedings of the ACM 2011 conference on Computer supported cooperative work. ACM, 341--350.

Digital Library

[46]

Greta Noordenbos, Anna Oldenhave, Jennifer Muschter, and Nynke Terpstra. 2002. Characteristics and treatment of patients with chronic eating disorders. Eating disorders 10, 1 (2002), 15--29.

[47]

Thomas E Oxman, Stanley D Rosenberg, and Gary J Tucker. 1982. The language of paranoia. The American Journal of Psychiatry (1982).

[48]

Mahesh KB Parmar and David Machin. 1995. Survival analysis: a practical approach. John Wiley & Sons Chichester.

[49]

Michael J Paul and Mark Dredze. 2011. You Are What You Tweet: Analyzing Twitter for Public Health. In Proc. ICWSM.

[50]

James W Pennebaker, Tracy J Mayne, and Martha E Francis. 1997. Linguistic predictors of adaptive bereavement. Journal of personality and social psychology 72, 4 (1997), 863.

[51]

Kathleen M Pike. 1998. Long-term course of anorexia nervosa: response, relapse, remission, and recovery. Clinical psychology review 18, 4 (1998), 447--475.

[52]

Jenny Preece and Diane Maloney-Krichmar. 2005. Online communities: Design, theory, and practice. Journal of Computer-Mediated Communication 10, 4 (2005), 00--00.

[53]

Shelly Rodgers and Qimei Chen. 2005. Internet community group participation: Psychosocial benefits for women with breast cancer. Journal of Computer-Mediated Communication 10, 4 (2005), 00--00.

[54]

Philip Rowe. 2007. Essential statistics for the pharmaceutical sciences. John Wiley & Sons.

[55]

Stephanie Rude, Eva-Maria Gortner, and James Pennebaker. 2004. Language use of depressed and depression-vulnerable college students. Cognition & Emotion 18, 8 (2004), 1121--1133.

[56]

Leslie Regan Shade. 2003. Weborexics: The Ethical Issues Surrounding Pro-Ana Websites. SIGCAS Comput. Soc. 33, 4 (Dec. 2003).

Digital Library

[57]

Meredith M Skeels, Kenton T Unruh, Christopher Powell, and Wanda Pratt. 2010. Catalyzing social support for breast cancer patients. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. ACM, 173--182.

Digital Library

[58]

Nalini M Srinivasagam, Walter H Kaye, Katherine H Plotnicov, Catherine Greeno, Theodore E Weltzin, and Radhika Rao. 1995. Persistent perfectionism, symmetry, and exactness after long-term recovery from anorexia nervosa. American Journal of Psychiatry 152, 11 (1995), 1630--1634.

[59]

Michael Strober, Roberta Freeman, and Wendy Morrell. 1998. The long-term course of severe anorexia nervosa in adolescents: survival analysis of recovery, relapse, and outcome predictors over 10--15 years in a prospective study. International Journal of Eating Disorders 22 (1998), 339--60.

[60]

Sarah Swan and Bernice Andrews. 2003. The relationship between shame, eating disorders and disclosure in treatment. British journal of clinical psychology 42, 4 (2003), 367--378.

[61]

Shabbir Syed-Abdul, Luis Fernandez-Luque, Wen-Shan Jian, Yu-Chuan Li, Steven Crain, Min-Huei Hsu, Yao-Chin Wang, Dorjsuren Khandregzen, Enkhzaya Chuluunbaatar, Phung Anh Nguyen, and others. 2013. Misleading health-related information promoted through video-based social media: anorexia on YouTube. Journal of medical Internet research 15, 2 (2013).

[62]

Stephanie Tierney. 2006. The dangers and draw of online communication: Pro-anorexia websites and their implications for users, practitioners, and researchers. Eating Disorders 14, 3 (2006), 181--190.

[63]

Federica Tozzi, Patrick F Sullivan, Jennifer L Fear, Jan McKenzie, and Cynthia M Bulik. 2003. Causes and recovery in anorexia nervosa: The patient's perspective. International Journal of Eating Disorders 33, 2 (2003), 143--154.

[64]

Kelly Bemis Vitousek, Jennifer Daly, and Christopher Heiser. 1991. Reconstructing the internal world of the eating-disordered individual: Overcoming denial and distortion in self-report. International Journal of Eating Disorders 10, 6 (1991), 647--666.

[65]

Paul Wicks, Michael Massagli, Jeana Frost, Catherine Brownstein, Sally Okun, Timothy Vaughan, Richard Bradley, and James Heywood. 2010. Sharing health data for better outcomes on PatientsLikeMe. Journal of medical Internet research 12, 2 (2010).

[66]

John B Willett and Judith D Singer. 1993. Investigating onset, cessation, relapse, and recovery: why you should, and how you can, use discrete-time survival analysis to examine event occurrence. Journal of consulting and clinical psychology 61, 6 (1993), 952.

[67]

Markus Wolf, Jan Sedway, Cynthia M Bulik, and Hans Kordy. 2007. Linguistic analyses of natural written language: Unobtrusive assessment of cognitive style in eating disorders. International journal of eating disorders 40, 8 (2007), 711--717.

[68]

Markus Wolf, Florian Theis, and Hans Kordy. 2013. Language Use in Eating Disorder Blogs Psychological Implications of Social Online Activity. Journal of Language and Social Psychology 32, 2 (2013), 212--226.

[69]

Elad Yom-Tov, Luis Fernandez-Luque, Ingmar Weber, and Steven P Crain. 2012. Pro-anorexia and pro-recovery photo sharing: A tale of two warring tribes. Journal of medical Internet research 14, 6 (2012).

Cited By

Yoo DWoo HPendse SLu NBirnbaum MAbowd GDe Choudhury M(2024)Missed Opportunities for Human-Centered AI Research: Understanding Stakeholder Collaboration in Mental Health AI ResearchProceedings of the ACM on Human-Computer Interaction10.1145/36373728:CSCW1(1-24)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637372
Petterson AJaimes Rodriguez IDoggett OChandra P(2024)Networks of care in digital domestic labour economiesProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642200(1-16)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642200
Chatterjee MModak SSarkar D(2023)Mental Health Predictions Through Online Social Media AnalyticsCognitive Cardiac Rehabilitation Using IoT and AI Tools10.4018/978-1-6684-7561-4.ch004(44-66)Online publication date: 5-May-2023
https://doi.org/10.4018/978-1-6684-7561-4.ch004
Show More Cited By

Index Terms

Recovery Amid Pro-Anorexia: Analysis of Recovery in Social Media
1. Information systems
  1. Information systems applications

Recommendations

Anorexia on Tumblr: A Characterization Study
DH '15: Proceedings of the 5th International Conference on Digital Health 2015

Eating disorders, such as anorexia nervosa are a major health concern affecting many young individuals. Given the extensive adoption of social media technologies in the anorexia affected demographic, we study behavioral characteristics of this ...
Detecting and Characterizing Eating-Disorder Communities on Social Media
WSDM '17: Proceedings of the Tenth ACM International Conference on Web Search and Data Mining

Eating disorders are complex mental disorders and responsible for the highest mortality rate among mental illnesses. Recent studies reveal that user-generated content on social media provides useful information in understanding these disorders. Most ...
#thyghgapp: Instagram Content Moderation and Lexical Variation in Pro-Eating Disorder Communities
CSCW '16: Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing

Pro-eating disorder (pro-ED) communities on social media encourage the adoption and maintenance of disordered eating habits as acceptable alternative lifestyles rather than threats to health. In particular, the social networking site Instagram has ...

Comments

Information & Contributors

Information

Published In

cover image ACM Conferences

CHI '16: Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems

May 2016

6108 pages

ISBN:9781450333627

DOI:10.1145/2858036

General Chairs:
Jofish Kaye
Yahoo
,
Allison Druin
University of Maryland / National Park Service
,
Program Chairs:
Cliff Lampe
University of Michigan
,
Dan Morris
Microsoft
,
Juan Pablo Hourcade
University of Iowa

Copyright © 2016 ACM.

Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]

Sponsors

SIGCHI: ACM Special Interest Group on Computer-Human Interaction

Publisher

Association for Computing Machinery

New York, NY, United States

Publication History

Published: 07 May 2016

Permissions

Request permissions for this article.

Request Permissions

Check for updates

Author Tags

Qualifiers

Research-article

Funding Sources

Conference

CHI'16

Sponsor:

SIGCHI

CHI'16: CHI Conference on Human Factors in Computing Systems

May 7 - 12, 2016

California, San Jose, USA

Acceptance Rates

CHI '16 Paper Acceptance Rate 565 of 2,435 submissions, 23%;

Overall Acceptance Rate 6,199 of 26,314 submissions, 24%

Contributors

Other Metrics

View Article Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

60
Total Citations
View Citations
4,864
Total Downloads

Downloads (Last 12 months)596
Downloads (Last 6 weeks)83

Reflects downloads up to 15 Oct 2024

Other Metrics

View Author Metrics

Citations

Cited By

Yoo DWoo HPendse SLu NBirnbaum MAbowd GDe Choudhury M(2024)Missed Opportunities for Human-Centered AI Research: Understanding Stakeholder Collaboration in Mental Health AI ResearchProceedings of the ACM on Human-Computer Interaction10.1145/36373728:CSCW1(1-24)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637372
Petterson AJaimes Rodriguez IDoggett OChandra P(2024)Networks of care in digital domestic labour economiesProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642200(1-16)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642200
Chatterjee MModak SSarkar D(2023)Mental Health Predictions Through Online Social Media AnalyticsCognitive Cardiac Rehabilitation Using IoT and AI Tools10.4018/978-1-6684-7561-4.ch004(44-66)Online publication date: 5-May-2023
https://doi.org/10.4018/978-1-6684-7561-4.ch004
Yuan YKasson ETaylor JCavazos-Rehg PDe Choudhury MAledavood T(2023)Examining the Gateway Hypothesis and Mapping Substance Use Pathways on Social Media: A Machine Learning Approach (Preprint)JMIR Formative Research10.2196/54433Online publication date: 9-Nov-2023
https://doi.org/10.2196/54433
Dingemans AVeldhuis JLähde I(2023)Motives for using social networking sites: a uses & gratifications perspective amongst people with eating disorder symptomsJournal of Eating Disorders10.1186/s40337-023-00946-111:1Online publication date: 19-Dec-2023
https://doi.org/10.1186/s40337-023-00946-1
Smith CMiller Hillberg HLevonian Z(2023)"Thoughts & Prayers" or " ❤️ & 🙏 ": How the Release of New Reactions on CaringBridge Reshapes Supportive Communication in Health CrisesProceedings of the ACM on Human-Computer Interaction10.1145/36100357:CSCW2(1-39)Online publication date: 4-Oct-2023
https://dl.acm.org/doi/10.1145/3610035
Ajmani LChancellor SMehta BFiesler CZimmer MDe Choudhury M(2023)A Systematic Review of Ethics Disclosures in Predictive Mental Health ResearchProceedings of the 2023 ACM Conference on Fairness, Accountability, and Transparency10.1145/3593013.3594082(1311-1323)Online publication date: 12-Jun-2023
https://dl.acm.org/doi/10.1145/3593013.3594082
Yoo DBhatnagar AErnala SAli ABirnbaum MAbowd GDe Choudhury M(2023)Discussing Social Media During Psychotherapy Consultations: Patient Narratives and Privacy ImplicationsProceedings of the ACM on Human-Computer Interaction10.1145/35794797:CSCW1(1-24)Online publication date: 16-Apr-2023
https://dl.acm.org/doi/10.1145/3579479
Schaadhardt AFu YPratt CPratt W(2023)“Laughing so I don’t cry”: How TikTok users employ humor and compassion to connect around psychiatric hospitalizationProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3581559(1-13)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3581559
Tam HBhat KMohindra PKumar N(2023)Learning to Navigate Health Taboos through Online Safe SpacesProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580708(1-15)Online publication date: 19-Apr-2023
https://dl.acm.org/doi/10.1145/3544548.3580708
Show More Cited By

View Options

View options

PDF

View or Download as a PDF file.

eReader

View online with eReader.

Get Access

Login options

Check if you have access through your login credentials or your institution to get full access on this article.

Full Access

Get this Publication

Media

Figures

Other

Tables

View Table of Contents