creators_name: Till, James E. type: journalp datestamp: 2004-04-21 lastmod: 2011-03-11 08:55:31 metadata_visibility: show title: Cancer-related electronic support groups as navigation-aids: Overcoming geographic barriers ispublished: pub subjects: cog-psy subjects: phil-ethics subjects: comp-sci-hci full_text_status: public keywords: Electronic support groups, cancer, mailing lists, navigation aids, Internet research ethics abstract: Cancer-related electronic support groups (ESGs) may be regarded as a complement to face-to-face groups when the latter are available, and as an alternative when they are not. Advantages over face-to-face groups include an absence of barriers imposed by geographic location, opportunities for anonymity that permit sensitive issues to be discussed, and opportunities to find peers online. ESGs can be especially valuable as navigation aids for those trying to find a way through the healthcare system and as a guide to the cancer journey. Outcome indicators that could be used to evaluate the quality of ESGs as navigation aids need to be developed and tested. Conceptual models for the navigator role, such as the Facilitating Navigator Model, are appropriate for ESGs designed specifically for research purposes. A Shared or Tacit Model may be more appropriate for unmoderated ESGs. Both conceptual models raise issues in Internet research ethics that need to be address date: 2004 date_type: published publication: Journal of Cancer Integrative Medicine volume: 2 number: 1 publisher: Prime National Publishing Corp. pagerange: 21-24 refereed: TRUE referencetext: 1. Eysenbach G: The impact of the Internet on cancer outcomes. CA Cancer J Clin. 2003; 53: 356-371. Available at: 2. Winzelberg AJ, Classen C, Alpers GW, Roberts H, Koopman C, Adams RE, Ernst H, Dev P, Taylor CB: Evaluation of an internet support group for women with primary breast cancer. Cancer 2003, 97:1164-1173. Available via: 3. Till JE. Evaluation of support groups for women with breast cancer: importance of the navigator role. Health Qual Life Outcomes 2003; 1: 16. Available at: 4. Farber JM, Deschamps M, Cameron R. Investigation and assessment of the navigator role in meeting the information, decisional and educational needs of women with breast cancer in Canada. [Web site for the Canadian Breast Cancer Initiative, Centre for Chronic Disease Prevention and Control, Health Canada] 2002. Available at: 5. The Breast Cancer Mailing List: An Online Community for Information and Support. Available at: 6. Google Search. Available at: 7. Eysenbach G, Till JE. Ethical issues in qualitative research on Internet communities. BMJ 2001(10 Nov); 323(7321): 1103-1105. Available at: 8. The Belmont Report. [Web site of the Office of Human Subjects Research, National Institutes of Health] 1979. Available at: 9. Ess C. Internet research ethics. [Project Web site of New York University] 2001. Available at: 10. Ethical decision-making and Internet research. Recommendations from the aoir ethics working committee. [Web site of the Association of Internet Researchers] 2002. Available at: citation: Till, James E. (2004) Cancer-related electronic support groups as navigation-aids: Overcoming geographic barriers. [Journal (Paginated)] document_url: http://cogprints.org/3566/1/TILL_ESG01.pdf