The role of an online community for people with a rare disease: Content analysis of messages posted on a primary biliary cirrhosis mailinglist

Journal of Medical Internet Research

Volumn 7, Issue 1, 2005, Pages

  Lasker, Judith N ^a   Sogolow, Ellen D ^a   Sharim, Rebecca R ^a  

^a LEHIGH UNIVERSITY   (United States)

Author keywords

Chronic liver disease; Internet support; Primary biliary cirrhosis

Indexed keywords

ADULT; AGED; ARTICLE; CHRONIC DISEASE; CODING; CONTENT ANALYSIS; DIAGNOSTIC TEST; FEMALE; HEALTH SERVICE; HUMAN; IDENTITY; MALE; MEDICAL INFORMATION SYSTEM; PRIMARY BILIARY CIRRHOSIS; RARE DISEASE; ROLE CHANGE; SOCIAL PSYCHOLOGY; STIGMA; SYMPTOM;

EID: 27844554031     PISSN: 14388871     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.7.1.e10     Document Type: Article

References (34)

1. National Institutes of Health, Autoimmune Diseases Coordinating Committee. Autoimmune Diseases Research Plan. URL: http://www.niaid.nih.gov/ dait/pdf/ADCC_Report.pdf [accessed 2004 Aug 1]
2. University of Maryland Medicine. Chronic Liver Disease. URL: http://www.umm.edu/liver/chronic.htm [accessed 2004 Aug 12]
3. Talwalkar JA, Lindor KD. Primary biliary cirrhosis. Lancet 2003 Jul 5;362(9377):53-61.
4. Worman HJ. What is Primary Biliary Cirrhosis? URL: http://cpmcnet. columbia.edu/dept/gi/PBC.html [accessed 2004 Mar 12]
5. Morgen S. Into Our Own Hands: The Women's Health Movement in the United States, 1969-1990. New Brunswick, NJ: Rutgers University Press; Jun 1, 2002.
6. Wood MS, Coggan JM, editors. Women's Health on the Internet. New York: Haworth Press; Feb 1, 2001.
7. Brann M, Anderson JG. E-medicine and health care consumers: recognizing current problems and possible resolutions for a safer environment. Health Care Anal 2002;10(4):403-415.
8. Eysenbach G, Köhler C. Health-related searches on the Internet. JAMA 2004 Jun 23;291(24):2946.
9. Cotten SR, Gupta SS. Characteristics of online and offline health information seekers and factors that discriminate between them. Soc Sci Med 2004 Nov;59(9):1795-1806.
10. Dickerson SS, Flaig DM, Kennedy MC. Therapeutic connection: help seeking on the Internet for persons with implantable cardioverter defibrillators. Heart Lung 2000 Jul;29(4):248-255.
11. Finn J. Computer-Based Self-Help Groups: On-Line Recovery for Addictions. Computers in Human Services 1996;13:21-41.
12. Han HR, Belcher AE. Computer-mediated support group use among parents of children with cancer - an exploratory study. Comput Nurs 2001 Jan;19(1):27-33.
13. White MH, Dorman SM. Online support for caregivers. Analysis of an Internet Alzheimer mailgroup. Comput Nurs 2000 Jul;18(4):168-76; quiz 177-9.
14. Finn J. An exploration of helping processes in an online self-help group focusing on issues of disability. Health Soc Work 1999 Aug;24(3):220-231.
15. Klemm P, Hurst M, Dearholt SL, Trone SR. Gender differences on Internet cancer support groups. Comput Nurs 1999 Mar;17(2):65-72.
16. Bury M. On chronic illness and disability. In: Bird C, Conrad P, Fremont A, editors. Handbook of Medical Sociology, 5th edition. NY: Prentice Hall; 2000:173-183.
17. Charmaz K. Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers Univ Press; Nov 1, 1991.
18. Charmaz K. Experiencing Chronic Illness. In: Albrecht G, Fitzpatrick R, Srimshaw S, editors. Handbook of Social Studies in Health and Medicine. London, UK: Sage; 2000:272-292.
19. Wainwright SP. Transcending chronic liver disease: a qualitative study. J Clin Nurs 1997 Jan;6(1):43-45.
20. Richman JA, Jason LA, Taylor RR, Jahn SC. Feminist perspectives on the social construction of chronic fatigue syndrome. Health Care Women Int 2000 Apr;21(3):173-185.
21. PBCers Organization. Primary Biliary Cirrhosis. URL: http://www. pbcers.org/ [accessed 2004 Mar 10]
22. Lasker JN, Sogolow ED, Short LS, Sharim R. For better and for worse: family and friends - responses to chronic liver disease. Illness Crisis and Loss [in press].
23. Bales RF. Interaction Process Analysis: A Method for the Study of Small Groups. Chicago, Ill: University Microfilms; 1976.
24. Bales RF, Cohen SP, Williamson SA. SYMLOG; A System for the Multiple Level Observation of Groups. New York, NY: Free Press; Oct 1, 1979.
25. Bjornsdottir G. Online social support for individuals concerned with heart disease: observing gender differences. Proc AMIA Symp 1999:681-685.
26. Goldblatt J, Taylor PJS, Lipman T, Prince MI, Baragiotta A, Bassendine MF, et al. The true impact of fatigue in primary biliary cirrhosis: a population study. Gastroenterology 2002 May;122(5):1235-1241.
27. Gralnek IM, Hays RD, Kilbourne A, Rosen HR, Keeffe EB, Artinian L, et al. Development and evaluation of the Liver Disease Quality of Life instrument in persons with advanced, chronic liver disease - the LDQOL 1.0. Am J Gastroenterol 2000 Dec;95(12):3552-3565.
28. Werner A, Isaksen LW, Malterud K. 'I am not the kind of woman who complains of everything': illness stories on self and shame in women with chronic pain. Soc Sci Med 2004 Sep;59(5):1035-1045.
29. Eysenbach G, Powell J, Kuss O, Sa ER. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA 2002 May 22;287(20):2691-2700.
30. Potts HWW, Wyatt JC. Survey of doctors' experience of patients using the Internet. J Med Internet Res 2002 Mar 31;4(1):e5.
31. Klemm P, Hardie T. Depression in Internet and face-to-face cancer support groups: a pilot study. Oncol Nurs Forum 2002 May;29(4):e45-e51.
32. Fogel J, Albert SM, Schnabel F, Ditkoff BA, Neugut AI. Use of the Internet by women with breast cancer. J Med Internet Res 2002 Nov 22;4(2):e9.
33. Preece J, Nonnecke B, Andrews D. The top five reasons for lurking; improving community experiences for everyone. Computers in Human Behavior 2004;20(2):201-223.
34. Stegbaujer C, Rausch A. The silent majority-'lurkers' in Internet-based forums. Zeitschrift fur Soziologie 2001;30:48-64.