Modeling social support in autism community on social media

Abstract With the high prevalence of autism spectrum disorder (ASD) among the younger generation, there is a shortage of adequate resources to deliver care for the individuals dealing with autism. Families dealing with autism face huge economic costs and emotional stress to provide care for personnel diagnosed with ASD. Globally almost two billion people use social media regularly. Social media have many advantages such as it connects a large group of individuals with the same subject of interest located across geographical miles. For the families dealing with autism, social media sites provide an open and easily accessible platform to share, gather and exchange information. Social science and information science literature lacks any mathematical definition of social support assessment; our proposed information-theoretic model to assess social support leverages theoretical definitions of social support from social science, linguistics, and social network theory. The proposed methodology enables us not only to estimate social support in a health community, but also to evaluate the effectiveness of communities. The research design used in the study is also generic and applies to other online healthcare communities as well as general online or virtual communities, such as gaming, education, and learning. In the study, we systematically analyze the interactions among families of autism communities on different social media platforms to extract knowledge and to assess the support propagated via those interactions within the autism community. The study found that the autism community provides significant social support to its members both in Twitter and blogs. Social support facilitated by community members can help caregivers surmount challenges and be effective in reducing psychological stress and enhancing the quality of life for individuals diagnosed with ASD.

[1]  Nitin Agarwal,et al.  Social Support and Stress in Autism Blogging Community on Twitter , 2015, SBP.

[2]  David A. Williams,et al.  Religious involvement, social support, and health among African-American women on the east side of detroit , 2003, Journal of General Internal Medicine.

[3]  D. Gustafson,et al.  Perceived helpfulness and impact of social support provided by family, friends, and health care providers to women newly diagnosed with breast cancer , 2007, Psycho-oncology.

[4]  Загоровская Ольга Владимировна,et al.  Исследование влияния пола и психологических характеристик автора на количественные параметры его текста с использованием программы Linguistic Inquiry and Word Count , 2015 .

[5]  J. Cross NeuroTribes: The Legacy of Autism and the Future of Neurodiversity , 2016 .

[6]  Han Lin,et al.  Detecting well-being via computerized content analysis of brief diary entries. , 2013, Psychological assessment.

[7]  Emily K. Vraga,et al.  In Related News, That Was Wrong: The Correction of Misinformation Through Related Stories Functionality in Social Media , 2015 .

[8]  A. Bambina Online Social Support: The Interplay of Social Networks and Computer-Mediated Communication , 2007 .

[9]  Kristen Campbell Eichhorn,et al.  Soliciting and Providing Social Support Over the Internet: An Investigation of Online Eating Disorder Support Groups , 2008, J. Comput. Mediat. Commun..

[10]  A. Rozga,et al.  Early detection of core deficits in autism. , 2004, Mental retardation and developmental disabilities research reviews.

[11]  Mary Jane Weiss,et al.  Hardiness and Social Support as Predictors of Stress in Mothers of Typical Children, Children with Autism, and Children with Mental Retardation , 2002 .

[12]  M. Knapp,et al.  Costs of autism spectrum disorders in the United Kingdom and the United States. , 2014, JAMA pediatrics.

[13]  C. Jordan,et al.  Evolution of autism support and understanding via the World Wide Web. , 2010, Intellectual and developmental disabilities.

[14]  A. Kata A postmodern Pandora's box: anti-vaccination misinformation on the Internet. , 2010, Vaccine.

[15]  Leonard M. Freeman,et al.  A set of measures of centrality based upon betweenness , 1977 .

[16]  Lynn Plimley A review of quality of life issues and people with autism spectrum disorders , 2007 .

[17]  Neil S. Coulson,et al.  Sharing, supporting and sobriety: a qualitative analysis of messages posted to alcohol-related online discussion forums in the United Kingdom , 2014 .

[18]  Christopher C. Yang,et al.  Social Support and Exchange Patterns in an Online Smoking Cessation Intervention Program , 2013, 2013 IEEE International Conference on Healthcare Informatics.

[19]  A. Mcalister,et al.  Using Social Media to Communicate Child Health Information to Low-Income Parents , 2011, Preventing chronic disease.

[20]  N. Perrin,et al.  Mismatches in social support and psychosocial adjustment to breast cancer. , 2004, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[21]  Sharon L. Milgram,et al.  The Small World Problem , 1967 .

[22]  B. Boyd,et al.  Examining the Relationship BetWeen Stress and Lack of Social Support in Mothers of Children With Autism , 2002 .

[23]  Scott H. Burton,et al.  Social moms and health: A multi-platform analysis of mommy communities , 2013, 2013 IEEE/ACM International Conference on Advances in Social Networks Analysis and Mining (ASONAM 2013).

[24]  Marco Rosa,et al.  Four degrees of separation , 2011, WebSci '12.

[25]  N. Coulson,et al.  Social support in cyberspace: a content analysis of communication within a Huntington's disease online support group. , 2007, Patient education and counseling.

[26]  C. Ross,et al.  Family relationships, social support and subjective life expectancy. , 2002, Journal of health and social behavior.

[27]  M. White,et al.  Receiving social support online: implications for health education. , 2001, Health education research.

[28]  Paul M. B. Vitányi,et al.  The Google Similarity Distance , 2004, IEEE Transactions on Knowledge and Data Engineering.

[29]  T. Wills,et al.  Stress, social support, and the buffering hypothesis. , 1985, Psychological bulletin.

[30]  Eric Horvitz,et al.  Characterizing and predicting postpartum depression from shared facebook data , 2014, CSCW.

[31]  B. Fredrickson The role of positive emotions in positive psychology. The broaden-and-build theory of positive emotions. , 2001, The American psychologist.

[32]  C. Barr Taylor,et al.  Evaluation of computerized text analysis in an Internet breast cancer support group , 2005, Comput. Hum. Behav..

[33]  Burton H. Singer,et al.  Emotion, Social Relationships, and Health , 2001 .

[34]  Jean E. Wallace "Job Stress, Depression and Work-to-Family Conflict: A Test of the Strain and Buffer , 2006 .

[35]  Sister Mechtraud join,et al.  The Elementary Forms of the Religious Life , 1955 .

[36]  S. Cobb Presidential Address-1976. Social support as a moderator of life stress. , 1976, Psychosomatic medicine.

[37]  S. Levy,et al.  Identifying Children With Autism Early? , 2007, Pediatrics.

[38]  J. K. Johnsen,et al.  Social support in a wired world: Use of online mental health forums in Norway , 2002, Nordic journal of psychiatry.

[39]  Lindsay H. Shaw,et al.  In Defense of the Internet: The Relationship between Internet Communication and Depression, Loneliness, Self-Esteem, and Perceived Social Support , 2002, Cyberpsychology Behav. Soc. Netw..

[40]  A. Jadad,et al.  Analysis of cases of harm associated with use of health information on the internet. , 2002, JAMA.

[41]  Rossella Zucco,et al.  Parents Seeking Health-Related Information on the Internet: Cross-Sectional Study , 2013, Journal of medical Internet research.

[42]  Gretchen K. Carlisle Pet dog ownership decisions for parents of children with autism spectrum disorder. , 2014, Journal of pediatric nursing.

[43]  Irwin G. Sarason,et al.  A Brief Measure of Social Support: Practical and Theoretical Implications , 1987 .

[44]  B. Lakey,et al.  Cognitive processes in perceived social support. , 1990 .

[45]  Neil S. Coulson,et al.  Receiving Social Support Online: An Analysis of a Computer-Mediated Support Group for Individuals Living with Irritable Bowel Syndrome , 2005, Cyberpsychology Behav. Soc. Netw..

[46]  R. Hastings,et al.  Systems Analysis of Stress and Positive Perceptions in Mothers and Fathers of Pre-School Children with Autism , 2005, Journal of autism and developmental disorders.

[47]  Sara Ryan,et al.  From Advocate to Activist? Mapping the Experiences of Mothers of Children on the Autism Spectrum , 2009 .

[48]  N. Krause,et al.  Religion, social support, and health among the Japanese elderly. , 1999, Journal of health and social behavior.

[49]  J. Bruhn,et al.  Roseto revisited: further data on the incidence of myocardial infarction in Roseto and neighboring Pennsylvania communities. , 1974, Transactions of the American Clinical and Climatological Association.

[50]  J. Lasker,et al.  The Roseto effect: a 50-year comparison of mortality rates. , 1992, American journal of public health.

[51]  B. Young,et al.  Social media use among patients and caregivers: a scoping review , 2015 .

[52]  Margie E. Lachman,et al.  Social Support and Strain from Partner, Family, and Friends: Costs and Benefits for Men and Women in Adulthood , 2000 .