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"It's a microcosm of life": weaving a web of information and support in an online breast cancer community

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Title: "It's a microcosm of life": weaving a web of information and support in an online breast cancer community
Author(s): Rubenstein, Ellen L.
Director of Research: Kendall, Lori
Doctoral Committee Chair(s): Kendall, Lori
Doctoral Committee Member(s): Smith, Linda C.; MacMullen, W. John; Haythornthwaite, Caroline A.
Department / Program: Library & Information Science
Discipline: Library & Information Science
Degree Granting Institution: University of Illinois at Urbana-Champaign
Degree: Ph.D.
Genre: Dissertation
Subject(s): health communication online communities information behavior social support social capital
Abstract: This ethnographic study examines the interactions of an online breast cancer community to understand participants' information behavior, the role of social support in participants' lives, how being part of this community influences health decisions and practices, and how the community is integrated into participants' everyday lives. Using archives analysis, participant-observation, and interviews, I learned that this community is a microcosm of daily life, comprising a complex culture that has a significant impact on many participants' lives. Members of the community help each other as they deal with breast cancer, but the community also incorporates diverse interactions that exceed the boundaries of breast cancer, reaching into other health conditions as well as the challenges and joys of everyday life. Many participants noted strong emotional ties to others in the community, enhancing these ties through email, phone conversations, and face-to-face meetings. An important finding of this study is the social integration of participants beyond the scope of the online space through their communication practices as well as the lengths they go to when assisting each other. I also found that exchanges of information and social support in this community are interwoven, inextricably linked in such a way that most conversations are suffused with both, occurring in conjunction with each other. My analysis showed that interactions that initially appeared to be either information exchange or expressions of social support actually comprised elements of both, threaded together in such a way as to make it difficult to distinguish one from the other. This study offers insights about the richness and complexity of relationships that occur in this particular online forum as well as insights into the potential of online health communities. Community participants have built a web of relationships through conversations interwoven with information and social support, constructing an atmosphere that is helpful, supportive, and meaningful, and which often expands beyond the scope of an online community.
Issue Date: 2011-08-26
Rights Information: Copyright 2011 Ellen Rubenstein
Date Available in IDEALS: 2013-08-27
Date Deposited: 2011-08

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