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

Communication Quarterly

Volumn 61, Issue 2, 2013, Pages 236-251

  Loane, Susan Stewart ^a   D'Alessandro, Steven ^a  

^a MACQUARIE UNIVERSITY   (Australia)

Author keywords

Amyotrophic Lateral Sclerosis; Disability; Internet Communication; Online Communities; Social Support

Indexed keywords

EID: 84876307590     PISSN: 01463373     EISSN: 17464102     Source Type: Journal    
DOI: 10.1080/01463373.2012.752397     Document Type: Article

References (39)

1. 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.
2. 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.
3. 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.
4. 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.
5. Cawyer, C. S., & Smith-Dupre, A. (2009). Communicating social support: Identifying supportive episodes in an HIV/AIDS support group. Communication Quarterly, 43, 243-258.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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.
11. Cutrona, C. E., & Suhr, J. A. (1992). Controllability of stressful events and satisfaction with spouse support behaviours. Communication Research, 19, 154-174.
12. 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.
13. 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.
14. Ellis, K., & Kent, M. (2011). Disability and new media. New York, NY: Routledge.
15. Ess, C. (2002). Ethical decision-making and internet research: Recommendations from the aoir ethics working committee. Retrieved fromhttp://aoir.org/reports/ethics.pdf
16. 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.
17. 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.
18. 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.
19. 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.
20. Fox, S., & Jones, S. (2011). The social life of health information. Washington, DC: Pew Research Center.
21. 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.
22. Hine, C. (2000). Virtual ethnography. London, England: Sage.
23. Hine, C. (2004, July). Virtual ethnography revisited. Paper presented at the session on Online Research Methods, Research Methods Festival, Oxford, England. Retrieved fromhttp://xa.yimg.com/kq/groups/19591876/1517519009/name/hine_virtual_etnograpfy_revisited.pdf
24. 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.
25. Kozinets, R. V. (2002). The field behind the screen: Using netnography for marketing research in online comunities. Journal of Marketing Research, 39, 61-72.
26. Leung, L. (2007). Stressful life events, motives for Internet use and social support among digital kids. CyberPsychology and Behaviour, 10, 204-214.
27. 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.
28. 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.
29. 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.
30. 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.
31. 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 fromhttp://www.nhmrc.gov.au/guidelines/publications/e72-0
32. O'Brien, T., Kelly, M., & Saunders, C. (1992). Motor neurone disease: A hospice perspective. British Medical Journal, 304 (6825), 471-473.
33. 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.
34. QSR International Pty LTD. (2011). NVivo (Version 9). Doncaster, Victoria, Australia.
35. 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.
36. Spiggle, S. (1994). Analysis and interpretation of qualitative data in consumer research. Journal of Consumer Research, 21, 491-503.
37. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
38. 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.
39. 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.