Communication That Changes Lives: Social Support Within an Online Health Community for ALS

References

• Beaudoin , C. E. , & Tao , C.-C. ( 2007 ). Benefiting from social capital in online support groups: An empirical study of cancer patients . CyberPsychology and Behaviour , 10 , 587 – 590 .
   PubMedGoogle Scholar
• Braithwaite , D. O. , Waldron , V. R. , & Finn , J. ( 1999 ). Communication of social support in computer-mediated groups for persons with disabilities . Health Communication , 11 , 123 – 151 .
   PubMed Web of Science ®Google Scholar
• British Psychological Society . ( 2007 ). Report of the Working Party on Conducting Ethical Research on the Internet: Guidelines for ethical practice in psychological research online . Leicester , England : Author .
   Google Scholar
• Buckley , J. , Warlow , C. , Smith , P. , Hilton-Jones , D. , Irvine , S. , & Tew , J. R. ( 1983 ). Motor Neuron Disease in England and Wales, 1959–1979 . Journal of Neurology, Neurosurgery, and Psychiatry , 46 , 197 – 205 .
   PubMed Web of Science ®Google Scholar
• Cawyer , C. S. , & Smith-Dupre , A. ( 2009 ). Communicating social support: Identifying supportive episodes in an HIV/AIDS support group . Communication Quarterly , 43 , 243 – 258 .
   Google Scholar
• Chancellor , A. M. , & Warlow , C. P. ( 1992 ). Adult onset Motor Neuron Disease: Worldwide mortality, incidence and distribution since 1950 . Journal of Neurology, Neurosurgery, and Psychiatry , 55 , 1106 – 1115 .
   PubMed Web of Science ®Google Scholar
• Coulson , N. S. ( 2005 ). Receiving social support online: An analysis of a computer-mediated support group for individuals living with Irritable Bowel Syndrome . CyberPsychology and Behaviour , 8 , 580 – 584 .
   PubMedGoogle Scholar
• Coulson , N. S. , Buchanan , H. , & Aubeeluck , A. ( 2007 ). Social support in cyberspace: A content analysis of communication within a Huntingdon's Disease online support group . Patient Education and Counseling , 68 , 173 – 178 .
   PubMed Web of Science ®Google Scholar
• Coulson , N. S. , & Kniff , R. C. (2007). Coping with food allergy: Exploring the role of the online support group. CyberPsychology and Behaviour , 10, 145–148.
   PubMedGoogle Scholar
• Cutrona , C. E. , & Russell , D. ( 1990 ). Type of social support and specific stress: Towards a theory of optimal matching . In B. R. Sarason , I. G. Sarason , & G. R. Pierce (Eds.), Social support: An interactional view (pp. 319 – 366 ). New York , NY : Wiley .
   Google Scholar
• Cutrona , C. E. , & Suhr , J. A. ( 1992 ). Controllability of stressful events and satisfaction with spouse support behaviours . Communication Research , 19 , 154 – 174 .
   Web of Science ®Google Scholar
• Drentea , P. , & Moren-Cross , J. ( 2005 ). Social capital and social support on the web: The case of an internet mother site . Sociology of Health and Illness , 27 , 920 – 943 .
   PubMed Web of Science ®Google Scholar
• Eichhorn , K. C. ( 2008 ). Soliciting and providing social support over the internet: An investigation of online eating disorder groups . Journal of Computer-Mediated Communication , 14 , 67 – 78 .
   Web of Science ®Google Scholar
• Ellis , K. , & Kent , M. ( 2011 ). Disability and new media . New York , NY : Routledge .
   Google Scholar
• Ess , C. ( 2002 ). Ethical decision-making and internet research: Recommendations from the aoir ethics working committee . Retrieved from http://aoir.org/reports/ethics.pdf
   Google Scholar
• Eysenbach , G. , Powell , J. , Englesakis , M. , Rizo , C. , & Stern , A. ( 2004 ). Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions . British Medical Journal , 328 , 1166 – 1172 .
   PubMed Web of Science ®Google Scholar
• Farnham , S. , Cheng , L. , Stone , L. , Zaner-Godsey , M. , Hibbeln , C. , Syrjala , K., … ( 2002 ). HutchWorld; Clinical study of computer-mediated social support for cancer patients and their caregivers. Paper presented at the conference on Human Factors in Computing Systems; Proceedings of the Special Interest Group on Computer-Human Interaction conference on Human Factors in Computing Systems: Changing Our World, Changing Ourselves.
   Google Scholar
• Feenberg , A. L. , Licht , J. M. , Kane , K. P. , Moran , K. , & Smith , R. A. ( 1996 ). The online patient meeting . Journal of the Neurological Sciences , 139 ( Suppl. 1 ), 129 – 131 .
   PubMed Web of Science ®Google Scholar
• Finn , J. ( 1999 ). An exploration of helping processes in an online self-help group focusing on issues of disability . Health and Social Work , 24 , 220 – 231 .
   PubMed Web of Science ®Google Scholar
• Fox , S. , & Jones , S. ( 2011 ). The social life of health information . Washington , DC : Pew Research Center .
   Google Scholar
• Hardey , M. ( 2001 ). “E-Health”: The Internet and the transformation of patients into consumers and producers of health knowledge . Information, Communication & Society , 4 , 388 – 405 .
   Google Scholar
• Hine , C. ( 2000 ). Virtual ethnography . London , England : Sage .
   Google Scholar
• Hine , C. ( 2004 , July ). Virtual ethnography revisited. Paper presented at the session on Online Research Methods, Research Methods Festival, Oxford, England. Retrieved from http://xa.yimg.com/kq/groups/19591876/1517519009/name/hine_virtual_etnograpfy_revisited.pdf
   Google Scholar
• Hobfoll , S. E. , & Parris Stephens , M. A. ( 1990 ). Social support during extreme stress: Consequences and intervention . In B. R. Sarason , I. G. Sarason , & G. R. Pierce (Eds.), Social support: An interactional view (pp. 455 – 481 ). New York , NY : Wiley .
   Google Scholar
• Kozinets , R. V. ( 2002 ). The field behind the screen: Using netnography for marketing research in online comunities . Journal of Marketing Research , 39 , 61 – 72 .
   Web of Science ®Google Scholar
• Leung , L. ( 2007 ). Stressful life events, motives for Internet use and social support among digital kids . CyberPsychology and Behaviour , 10 , 204 – 214 .
   PubMedGoogle Scholar
• Lieberman , M. A. , Winzelberg , A. , Golant , M. , Wakahiro , M. , Diminno , M. , Aminoff , M. , & Christine , C. ( 2005 ). Online support groups for Parkinson's patients . Social Work in Health Care , 42 ( 2 ), 23 – 38 .
   PubMed Web of Science ®Google Scholar
• Lindsay , S. , Smith , S. , Bellaby , P. , & Baker , R. ( 2009 ). The health impact of an online heart disease support group: A comparison of moderated versus unmoderated support . Health Education Research , 24 ( 4 ), 646 – 654 .
   PubMed Web of Science ®Google Scholar
• Malik , S. , & Coulson , N. S. ( 2008 ). The male experience of infertility: A thematic analysis of an online fertility support group bulletin board . Journal of Reproductive & Infant Psychology , 26 , 18 – 30 .
   Web of Science ®Google Scholar
• Mo , P. K. H. , & Coulson , N. S. (2008). Exploring the communication of social support within virtual communities: A content analysis of messages posted to an online HIV/AIDS support group. CyberPsychology and Behaviour , 11, 371–374.
   PubMedGoogle Scholar
• National Health, & Medical Research Council, Australian Research Council, & the Australian Vice-Chancellor's Committee . ( 2007 ). National statement on ethical conduct in human research . Canberra , Australia : Author . Retrieved from http://www.nhmrc.gov.au/guidelines/publications/e72-0
   Google Scholar
• O'Brien , T. , Kelly , M. , & Saunders , C. ( 1992 ). Motor neurone disease: A hospice perspective . British Medical Journal , 304 ( 6825 ), 471 – 473 .
   PubMed Web of Science ®Google Scholar
• Owen , J. E. , Boxley , L. , Goldstein , M. S. , Lee , J. H. , Breen , N. , & Rowland , J. H. ( 2010 ). Use of health-related online support groups: Population data from the California Health Interview Survey Complementary and Alternative Medicine Study . Journal of Computer-Mediated Communication , 15 , 427 – 446 .
   Web of Science ®Google Scholar
• QSR International Pty LTD. ( 2011 ). NVivo (Version 9) . Doncaster , Victoria , Australia .
   Google Scholar
• Ray , R. A. , & Street , A. F. ( 2005 ). Who's there and who cares: Age as an indicator of social support networks for caregivers among people living with motor neurone disease . Health and Social Care in the Community , 13 , 542 – 552 .
   PubMed Web of Science ®Google Scholar
• Spiggle , S. ( 1994 ). Analysis and interpretation of qualitative data in consumer research . Journal of Consumer Research , 21 , 491 – 503 .
   Web of Science ®Google Scholar
• Strauss , A. , & Corbin , J. ( 1990 ). Basics of qualitative research: Grounded theory procedures and techniques . Newbury Park , CA : Sage .
   Google Scholar
• Wright , K. ( 2000 ). Perceptions of on-line support providers: An examination of perceived homophily, source credibility, communication and social support within on-line support groups . Communication Quarterly , 48 , 44 – 59 .
   Google Scholar
• Yu , J. , Taverner , N. , & Madden , K. ( 2011 ). Young people's views on sharing health-related stories on the Internet . Health and Social Care in the Community , 19 , 326 – 334 .
   PubMed Web of Science ®Google Scholar