Araştırma Makalesi
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Sağlık İletişiminde Çevrimiçi Sosyal Destek Sitelerine Katılım Düzeyi: Kanser hastalarının Kullanım Davranışlarına Yönelik Araştırma

Yıl 2019, Cilt: 2 Sayı: 2, 96 - 117, 22.10.2019

Öz



 Çevrimiçi sosyal destek grupları aynı
hastalıktan ve hastalık süreçlerinden muzdarip bireylerin birbirleri ile iletişim
kurarak bilgisel duygusal ve psikolojik destek aldıkları çevrimiçi
topuluklardır. Sağlık bilgisini dijital ortamlarda arama davranışı ile birlikte
kullanıcının yeni ihtiyaçlarına cevap vermeye çalışan bu topluluklar, iletişim
dahil birçok alanda çalışan araştırmacılarında çalışma alanı haline
gelmektedir. Çevrimiçi destek topluluklarının doğasını anlamak, bu toplulukların etkin ve sürdürülebilir olması açısından önemlidir. Aksi takdirde bu topluluklar
boş sessiz yığınlar olmaktan öteye geçemeyecektir. Ayrıca hastalık grupları
gibi hassas toplulukların iyi anlaşılması ve iyi yönetilmesi, hastalıkla
baş etme sürecinde bireye önemli motivasyon kaynağı olabilmektedir. Bu çalışma
da Facebook’ta kanser hastaları ve yakınları tarafından kurulmuş “Kanserle
Dans” sosyal destek grubuna ait kullanıcıların kullanım davranışları ve
katılımcı düzeylerini araştırmak amaçlanmıştır. Elde edilen bulgular kapsamında
kanser hastalığına yönelik destek aranan çevrimiçi destek grubunda hastalığa
dair demografik ve hastalıkla ile ilgili bulguların Türkiye’deki kanser
istatistikleri ile benzerlik gösterdiği ve grubu kullanan hastaların bu
platformu sıklıkla ve uzun süredir kullandığı tespit edilmiştir. Çevrimiçi
destek grubuna katılım düzeyi ise en yüksek katılımdan en düşük katılıma göre
pasif katılımcılar (lurkers), aktif katılımcılar (participants) ve modere
edenler (moderators) olarak sıralanmıştır.



 




Kaynakça

  • Arthur, C. (2006, July 14). What is the 1% rule? Retrieved from The Guardian News and Media: https://www.theguardian.com/technology/2006/jul/20/guardianweeklytechnologysection2Beaudoin, M. (2002). Learning or lurking?: Tracking the ‘‘invisible’’ online. The Internet and Higher Education, 147-155.Bozkurt , S. (2012). GfK Türkiye - İnternetin Hastanın Hayatındaki Rolü Çalışması. Digital Health Summit . İstanbul: GFK Türkey.Castelnuovo, G., Gaggioli, A., & Riva, G. (2001). CyberPsychology meets clinical psychology: The emergence of e-therapy in mental health care. In C. Galimberti, & G. Riva, Towards, PsyberPsychology: Mind, Cognition and Society in the Internet Age (pp. 230-252). Amsterdam: IOS Press.Chen, F. (2004). Passive forum behaviors (lurking): A community perspective. Proceedings of the 6th international conference on learning sciences (pp. 128-135). International Society of the Learning Sciences.Davison, K., Pennebaker, J., & Dickerson, S. (2000). The social psychology of illness support groups. American Psychologist, 2(55), 205-217.Ebner, M., Holzinger, A., & Catarci, T. (2005). Lurking: An underestimated human computer phenomenon. Multimedia, IEEE, 70-75.ECDC. (2011). A literature review on health informationseeking behaviour on the web: a health consumer and health professional perspective. Retrieved 8 2, 2019, from https://ecdc.europa.eu: https://ecdc.europa.eu/sites/portal/files/media/en/publications/Publications/Literature%20review%20on%20health%20information-seeking%20behaviour%20on%20the%20web.pdfEdelmann, N. (2013). Reviewing the definitions of ‘‘Lurkers’’ and some implications for online research. Cyberpsychology, Behavior, and Social Networking, 645-49.Egan, C., Jefferies, A., & Johal, J. (2006). Providing Fine-grained feedback within an On-line Learning system - Identifying the Workers from the Lurkers and the Shirkers. Electronic Journal of e-Learning, 1(4), 15-24.Fox, S. (2010, 12 13). Cancer 2.0: A summary of recent research. Retrieved from pewinternet.org: http://pewrsr.ch/Cancer20Fox, S., & Purcell, K. (2010, March 24). Chronic Disease and the Internet. Retrieved from pewinternet.org: http://pewinternet.org/Reports/2010/Chronic-Disease.aspxGanley, D., Moser, C., & Groenewegen, P. (2012). Categorizing behavior in online communities: A look into the world of cake bakers. 45th Hawaii international conference (pp. 3457–3466):). IEEE.Golder, S., & Donath, J. (2004). Social roles in electronic communities. Internet Research, 19-22.Greene, J.A., Choudhry, N.K, Kilabuk, E. Shrank, W.H. (2010). Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook. J Gen Intern Med 26(3):287–92Han, J., Kim, J., Yoon, H., Shim, M., McTavish, F., & Gustafson, D. (2012). Social and psychological determinants of levels of engagement with an online breast cancer support group: Posters, lurkers and nonusers. Journal of Health Communication, 3(17), 356-371.Han, J., Zheng, R., & Xu, Y. (2007). The effect of individual needs, trust and identification in explaining participation intentions in virtual communities. Proceedings of the 40th Annual Hawaii International Conference on System Sciences (HICSS'07) (pp. 179c-179c). IEEE.Helgeson, V., Cohen, S., Schulz, R., & Yasko, J. (2000). Group support interventions for women with breast cancer: Who benefits from what? Health Psychology, 2(19), 107-114.Huh, J., McDonald, D., Hartzler, A., & Pratt, W. (2013). Patient Moderator Interaction in Online Health Communities. American Medical Informatics Association (AMIA). Katz, J. (1998). Luring the lurkers. The top five reasons for lurking: improving community experiences for everyone. (J. Preece, B. Nonnecke, & D. Andrews, Compilers) Computers in Human Behavior 20. Retrieved Mart 1, 1999, from http://slashdot.org/features/98/12/28/Kollock, P., & Smith, M. (1996). Managing the Virtual Commons: Cooperation and Conflict in Computer Communities. Computer-Mediated Communication: Linguistic, Social, and Cross-Cultural Perspectives, edited by Susan Herring. Amsterdam: John Benjamins., 109-128.Lawrence , C., Wallner, L., & Kirch, M. (2016). Online Social Engagement by Cancer Patients: A Clinic-Based Patient Survey. JMIR CANCER. doi:doi:10.2196/cancer.5785Lee , J., & McKendree, J. (1999). Learning vicariously in a distributed environment. Active Learning(10), 4-9.Leshed, G. (2005). Posters, lurkers, and in between: A multidimensional model of online community participation patterns. Proceedings of the 11th HIC international conference. Las Ve-gas: Lawrence Erlbaum Associates Inc.Loane, S., & D'Alessandro, S. (2012). Communication That Changes Lives: Social Support Within an Online Health Community for ALS. Communication Quarterly, 236-251.Mason, B. (1999). Issues in virtual ethnography. Ethnographic studies in real and virtual environments: inhabited information spaces and connected communities conference. Edinburgh.Mason, B. (1999). Issues in virtual ethnography. Ethnographic studies in real and virtual environments: inhabited information spaces and connected communities conference. Edinburgh.Morris, M., & Ogan, C. (1996). The internet as mass medium. Journal of Communication, 39-50.Neelen, M., & Fetter, S. (2010). Lurking: A challenge or a fruitful strategy? A comparison between lurkers and active participants in an online corporate community of practice. International Journal of Knowledge and Learning,, 269-284.Nielsen, J. (2011, July 14). Participation inequality: Encouraging more users to contribute,. Retrieved from www.useit.com: http://www.useit.com/alertbox/participation_inequality.htmNonnecke, B. (2000). Lurking in email-based discussion lists. Unpublished PhD dissertation, South Bank.Nonnecke, B., & Preece, J. (2000). Lurker demographics: Counting the silent. Proceedings of the SIGCHI conference on human factors in computing systems (pp. 73-80). ACM.Nonnecke, B., & Preece, J. (2001). Why Lurkers Lurk. AMCIS 2001 Proceedings., 294.Nonnecke, B., Andrews, D., & Preece, J. (2006). Non-public and public online community participation: Needs, attitudes and behavior. Electronic Commerce Research, 7-20.Nonnecke, B., Preece, J., & Andrews, D. (2004). What lurkers and posters think of each other. Proceedings of the 37th annual Hawaii international conference (pp. 195-203). Citeseer.Preece , J., Nonnecke, B., & Andrews, D. (2004). The top five reasons for lurking: improving community experiences for everyone. Computers in Human Behavior 20, 201-223.Preece, J. (2000). Online communities: Designing usability, supporting sociability. . West Sussex, UK: John Wiley & Sons.Preece, J. (2001). Sociability and usability in online communities: Determining and measuring success. Behavior and Information Technology Journal, 347-356.Radin, P., & Landzelius, K. (2006). To me, it's my life': Medical communication, trust, and activism in cyberspace. Social Science & Medicine, 3(62), 591-601.Rafaeli, S., Ravid, G., & Soroka, V. (2004). De-lurking in virtual communities: A social communication network approach to measuring the effects of social and cultural capital. 27th Hawaii International Conference on System Sciences. USA.Rau, P.-L., Gao, Q., & Ding, Y. (2008). Relationship between the level of intimacy and lurking in online social network services. Computers in Human Behavior, 2757-2770.Rheingold, H. (2000). The Virtual Community : Homesteading on The Electronic Frontier. Cambridge, Mass: MIT Press.Robinson , W., Carroll , J., & Watson, W. (2005). Shared experience building around the family crucible of cancer. 23(2),. Families, Systems, & Health, 2(23), 131-147.Swartz, A. (2006, September 4). Raw thought: Who writes Wikipedia. Blog article. Retrieved from Raw thought by Aaron Swartz: http://www.aaronsw.com/weblog/whowriteswikipediaT.C.Sağlık Bakanlığı Halk Sağlığı Genel Müdürlüğü Kanser Dairesi Başkanlığı 2015 Yılı Türkiye Kanser İstatistikleri. (2018). 2015 Yılı Türkiye Kanser İstatistikleri. Retrieved from T.C.Sağlık Bakanlığı Halk Sağlığı Genel Müdürlüğü Kanser Dairesi Başkanlığı: https://hsgm.saglik.gov.tr/depo/birimler/kanser-db/istatistik/Turkiye_Kanser_Istatistikleri_2015.pdfT.C.Sağlık Bakanlığı Türkiye Halk Sağlığı Kurumu. (2019, Ocak 3). 2013-2018 Ulusal Kanser Kontrol Planı. Retrieved from /www.iccp-portal.org: https://www.iccp-portal.org/system/files/plans/Ulusal_Kanser_Kontrol_Plani_2013_2018.pdfTağ Kalafatoğlu, Ş. (2015). Kadın Katılımcıların Sanal Topluluklardaki Deneyimleri: Çevrimiçi Bir Hamilelik Topluluğu. Global Media Journal, 385-414.Taylor , S., Falke , R., Shoptaw, S., & Lichtman, R. (1986). Social support groups, and the cancer patient. 54(5), 608-615. Journal of Consulting and Clinical Psychology, 5(54), 608-615.Van Mierlo, T. (2014). The 1% rule in four digital health social networks: An observational study. Journal of Medical Internet Research, 16 .Wellman, B., & Gulia, M. (1999). Net surfers don’t ride alone: Virtual communities as communities. . Networks in the Global Village, 331–366.Wenger, E., McDermott, R., & Snyder, W. (2002). Cultivating communities of practice: a guide to managing knowledge. . USA: Harvard Business School Press.Wichmand, M., & Jensen, S. (2012). Small is beautiful-lurkers engaging through micro-contributions. In 4th European communication conference. Wright, K. (2002). Social support within an on-line cancer community: an assessment of emotional support, perceptions of advantages and disadvantages, and motives for using the community from a communication perspective. Journal of Applied Communication Research, 3(30), 195-209.
Yıl 2019, Cilt: 2 Sayı: 2, 96 - 117, 22.10.2019

Öz

Kaynakça

  • Arthur, C. (2006, July 14). What is the 1% rule? Retrieved from The Guardian News and Media: https://www.theguardian.com/technology/2006/jul/20/guardianweeklytechnologysection2Beaudoin, M. (2002). Learning or lurking?: Tracking the ‘‘invisible’’ online. The Internet and Higher Education, 147-155.Bozkurt , S. (2012). GfK Türkiye - İnternetin Hastanın Hayatındaki Rolü Çalışması. Digital Health Summit . İstanbul: GFK Türkey.Castelnuovo, G., Gaggioli, A., & Riva, G. (2001). CyberPsychology meets clinical psychology: The emergence of e-therapy in mental health care. In C. Galimberti, & G. Riva, Towards, PsyberPsychology: Mind, Cognition and Society in the Internet Age (pp. 230-252). Amsterdam: IOS Press.Chen, F. (2004). Passive forum behaviors (lurking): A community perspective. Proceedings of the 6th international conference on learning sciences (pp. 128-135). International Society of the Learning Sciences.Davison, K., Pennebaker, J., & Dickerson, S. (2000). The social psychology of illness support groups. American Psychologist, 2(55), 205-217.Ebner, M., Holzinger, A., & Catarci, T. (2005). Lurking: An underestimated human computer phenomenon. Multimedia, IEEE, 70-75.ECDC. (2011). A literature review on health informationseeking behaviour on the web: a health consumer and health professional perspective. Retrieved 8 2, 2019, from https://ecdc.europa.eu: https://ecdc.europa.eu/sites/portal/files/media/en/publications/Publications/Literature%20review%20on%20health%20information-seeking%20behaviour%20on%20the%20web.pdfEdelmann, N. (2013). Reviewing the definitions of ‘‘Lurkers’’ and some implications for online research. Cyberpsychology, Behavior, and Social Networking, 645-49.Egan, C., Jefferies, A., & Johal, J. (2006). Providing Fine-grained feedback within an On-line Learning system - Identifying the Workers from the Lurkers and the Shirkers. Electronic Journal of e-Learning, 1(4), 15-24.Fox, S. (2010, 12 13). Cancer 2.0: A summary of recent research. Retrieved from pewinternet.org: http://pewrsr.ch/Cancer20Fox, S., & Purcell, K. (2010, March 24). Chronic Disease and the Internet. Retrieved from pewinternet.org: http://pewinternet.org/Reports/2010/Chronic-Disease.aspxGanley, D., Moser, C., & Groenewegen, P. (2012). Categorizing behavior in online communities: A look into the world of cake bakers. 45th Hawaii international conference (pp. 3457–3466):). IEEE.Golder, S., & Donath, J. (2004). Social roles in electronic communities. Internet Research, 19-22.Greene, J.A., Choudhry, N.K, Kilabuk, E. Shrank, W.H. (2010). Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook. J Gen Intern Med 26(3):287–92Han, J., Kim, J., Yoon, H., Shim, M., McTavish, F., & Gustafson, D. (2012). Social and psychological determinants of levels of engagement with an online breast cancer support group: Posters, lurkers and nonusers. Journal of Health Communication, 3(17), 356-371.Han, J., Zheng, R., & Xu, Y. (2007). The effect of individual needs, trust and identification in explaining participation intentions in virtual communities. Proceedings of the 40th Annual Hawaii International Conference on System Sciences (HICSS'07) (pp. 179c-179c). IEEE.Helgeson, V., Cohen, S., Schulz, R., & Yasko, J. (2000). Group support interventions for women with breast cancer: Who benefits from what? Health Psychology, 2(19), 107-114.Huh, J., McDonald, D., Hartzler, A., & Pratt, W. (2013). Patient Moderator Interaction in Online Health Communities. American Medical Informatics Association (AMIA). Katz, J. (1998). Luring the lurkers. The top five reasons for lurking: improving community experiences for everyone. (J. Preece, B. Nonnecke, & D. Andrews, Compilers) Computers in Human Behavior 20. Retrieved Mart 1, 1999, from http://slashdot.org/features/98/12/28/Kollock, P., & Smith, M. (1996). Managing the Virtual Commons: Cooperation and Conflict in Computer Communities. Computer-Mediated Communication: Linguistic, Social, and Cross-Cultural Perspectives, edited by Susan Herring. Amsterdam: John Benjamins., 109-128.Lawrence , C., Wallner, L., & Kirch, M. (2016). Online Social Engagement by Cancer Patients: A Clinic-Based Patient Survey. JMIR CANCER. doi:doi:10.2196/cancer.5785Lee , J., & McKendree, J. (1999). Learning vicariously in a distributed environment. Active Learning(10), 4-9.Leshed, G. (2005). Posters, lurkers, and in between: A multidimensional model of online community participation patterns. Proceedings of the 11th HIC international conference. Las Ve-gas: Lawrence Erlbaum Associates Inc.Loane, S., & D'Alessandro, S. (2012). Communication That Changes Lives: Social Support Within an Online Health Community for ALS. Communication Quarterly, 236-251.Mason, B. (1999). Issues in virtual ethnography. Ethnographic studies in real and virtual environments: inhabited information spaces and connected communities conference. Edinburgh.Mason, B. (1999). Issues in virtual ethnography. Ethnographic studies in real and virtual environments: inhabited information spaces and connected communities conference. Edinburgh.Morris, M., & Ogan, C. (1996). The internet as mass medium. Journal of Communication, 39-50.Neelen, M., & Fetter, S. (2010). Lurking: A challenge or a fruitful strategy? A comparison between lurkers and active participants in an online corporate community of practice. International Journal of Knowledge and Learning,, 269-284.Nielsen, J. (2011, July 14). Participation inequality: Encouraging more users to contribute,. Retrieved from www.useit.com: http://www.useit.com/alertbox/participation_inequality.htmNonnecke, B. (2000). Lurking in email-based discussion lists. Unpublished PhD dissertation, South Bank.Nonnecke, B., & Preece, J. (2000). Lurker demographics: Counting the silent. Proceedings of the SIGCHI conference on human factors in computing systems (pp. 73-80). ACM.Nonnecke, B., & Preece, J. (2001). Why Lurkers Lurk. AMCIS 2001 Proceedings., 294.Nonnecke, B., Andrews, D., & Preece, J. (2006). Non-public and public online community participation: Needs, attitudes and behavior. Electronic Commerce Research, 7-20.Nonnecke, B., Preece, J., & Andrews, D. (2004). What lurkers and posters think of each other. Proceedings of the 37th annual Hawaii international conference (pp. 195-203). Citeseer.Preece , J., Nonnecke, B., & Andrews, D. (2004). The top five reasons for lurking: improving community experiences for everyone. Computers in Human Behavior 20, 201-223.Preece, J. (2000). Online communities: Designing usability, supporting sociability. . West Sussex, UK: John Wiley & Sons.Preece, J. (2001). Sociability and usability in online communities: Determining and measuring success. Behavior and Information Technology Journal, 347-356.Radin, P., & Landzelius, K. (2006). To me, it's my life': Medical communication, trust, and activism in cyberspace. Social Science & Medicine, 3(62), 591-601.Rafaeli, S., Ravid, G., & Soroka, V. (2004). De-lurking in virtual communities: A social communication network approach to measuring the effects of social and cultural capital. 27th Hawaii International Conference on System Sciences. USA.Rau, P.-L., Gao, Q., & Ding, Y. (2008). Relationship between the level of intimacy and lurking in online social network services. Computers in Human Behavior, 2757-2770.Rheingold, H. (2000). The Virtual Community : Homesteading on The Electronic Frontier. Cambridge, Mass: MIT Press.Robinson , W., Carroll , J., & Watson, W. (2005). Shared experience building around the family crucible of cancer. 23(2),. Families, Systems, & Health, 2(23), 131-147.Swartz, A. (2006, September 4). Raw thought: Who writes Wikipedia. Blog article. Retrieved from Raw thought by Aaron Swartz: http://www.aaronsw.com/weblog/whowriteswikipediaT.C.Sağlık Bakanlığı Halk Sağlığı Genel Müdürlüğü Kanser Dairesi Başkanlığı 2015 Yılı Türkiye Kanser İstatistikleri. (2018). 2015 Yılı Türkiye Kanser İstatistikleri. Retrieved from T.C.Sağlık Bakanlığı Halk Sağlığı Genel Müdürlüğü Kanser Dairesi Başkanlığı: https://hsgm.saglik.gov.tr/depo/birimler/kanser-db/istatistik/Turkiye_Kanser_Istatistikleri_2015.pdfT.C.Sağlık Bakanlığı Türkiye Halk Sağlığı Kurumu. (2019, Ocak 3). 2013-2018 Ulusal Kanser Kontrol Planı. Retrieved from /www.iccp-portal.org: https://www.iccp-portal.org/system/files/plans/Ulusal_Kanser_Kontrol_Plani_2013_2018.pdfTağ Kalafatoğlu, Ş. (2015). Kadın Katılımcıların Sanal Topluluklardaki Deneyimleri: Çevrimiçi Bir Hamilelik Topluluğu. Global Media Journal, 385-414.Taylor , S., Falke , R., Shoptaw, S., & Lichtman, R. (1986). Social support groups, and the cancer patient. 54(5), 608-615. Journal of Consulting and Clinical Psychology, 5(54), 608-615.Van Mierlo, T. (2014). The 1% rule in four digital health social networks: An observational study. Journal of Medical Internet Research, 16 .Wellman, B., & Gulia, M. (1999). Net surfers don’t ride alone: Virtual communities as communities. . Networks in the Global Village, 331–366.Wenger, E., McDermott, R., & Snyder, W. (2002). Cultivating communities of practice: a guide to managing knowledge. . USA: Harvard Business School Press.Wichmand, M., & Jensen, S. (2012). Small is beautiful-lurkers engaging through micro-contributions. In 4th European communication conference. Wright, K. (2002). Social support within an on-line cancer community: an assessment of emotional support, perceptions of advantages and disadvantages, and motives for using the community from a communication perspective. Journal of Applied Communication Research, 3(30), 195-209.
Toplam 1 adet kaynakça vardır.

Ayrıntılar

Birincil Dil Türkçe
Konular İletişim ve Medya Çalışmaları
Bölüm Makaleler
Yazarlar

Filiz Balta Peltekoğlu 0000-0001-6667-1737

Seray Öney Doğanyiğit 0000-0002-8175-0764

Yayımlanma Tarihi 22 Ekim 2019
Gönderilme Tarihi 4 Ağustos 2019
Kabul Tarihi 25 Eylül 2019
Yayımlandığı Sayı Yıl 2019 Cilt: 2 Sayı: 2

Kaynak Göster

APA Balta Peltekoğlu, F., & Öney Doğanyiğit, S. (2019). Sağlık İletişiminde Çevrimiçi Sosyal Destek Sitelerine Katılım Düzeyi: Kanser hastalarının Kullanım Davranışlarına Yönelik Araştırma. Uluslararası Halkla İlişkiler Ve Reklam Çalışmaları Dergisi, 2(2), 96-117.


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