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The Everyday Life and Information Practices of a Natural Immunity Advocate

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The Everyday Life and Information Practices of a Natural Immunity Advocate THE EVERYDAY LIFE AND INFORMATION PRACTICES OF A NATURAL IMMUNITY ADVOCATE Samantha J. Kaplan A dissertation submitted to the faculty at the University of North Carolina at Chapel Hill in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the School of information and Library Science. Chapel Hill 2018 Approved by: Ryan Shaw Jenny Bossaller Amelia Gibson Sandra Hughes-Hassell Brian Southwell © Year 2018 Samantha J. Kaplan ALL RIGHTS RESERVED ii ABSTRACT Samantha J. Kaplan: The Everyday Life and Information Practices of a Natural Immunity Advocate (Under the direction of Ryan Shaw) Parents continue to decline or delay immunizing their children resulting in outbreaks of vaccine-preventable disease across the United States. Efforts to profile these parents struggle to find demographic consensus or create a consistent profile of which parents make these problematic decisions. These parents are often assumed to be under the sway of misinformation, exacerbating the division between them and healthcare providers. Research about this population typically studies the behavior in isolate and in relation to the mainstream view where it is normative to vaccinate one’s children. This dissertation, a grounded theory embedded chronological case study of a vaccine- avoidant mommy blogger, describes a worldview where vaccination avoidance and delay is normative and documents related behaviors and beliefs that accompany not vaccinating one’s children. This was accomplished using multiple methods, particularly inductive coding, memoing, quantitative and qualitative content analysis, bibliometrics, and digital ethnography. Data streams included seven years of blog posts, videos, comment threads, information citations, artifacts endorsed or created by the blogger, and an assessment of family resemblances between the blogger and her digital peer network. iii From the data emerged a theoretical model that overlapped with Ludwik Fleck’s theory of thought collectives and Elfreda Chatman’s theory of information poverty. The findings include a set of family resemblances observed in the data and artifacts and assessed against a network of nearly 90 other cases. The findings include bibliometric evaluation of the information the blogger cited and discussion of her information behavior and how information operates within her worldview, where vaccine avoidance and delay is normative. iv ACKNOWLEDGEMENTS I would like to thank Dr. Susan Rathbun-Grubb for suggesting I pursue a doctoral degree and mentoring me throughout the process. I am grateful for the advice, mentorship, and insight of my advisor, Dr. Ryan Shaw, as I have progressed through the doctoral program and prepared my dissertation. I must also express my thanks to my wonderful committee members, Drs. Jenny Bossaller, Amelia Gibson, Sandra Hughes-Hassell, and Brian Southwell, who have guided me through this research. I would also like to thank Drs. Evelyn Daniel, Mary Grace Flaherty, Stephanie Haas, and Barbara Wildemuth for their support and wisdom. Additionally, behind every researcher is a stack of paperwork, and I thank the wonderful staff at SILS for always being willing to guide me through it with a smile. I would also like to thank the friends and colleagues who have supported me through this process, Ashlee Edwards, Sarah Beth Nelson, Leslie Thomson, Annie Chen, Patrick Golden, Megan Threats, Kristen Bowen, Charlene Finley, Amanda Click, Sandeep Avula, and Emily Vardell. I also wish to thank my beloved friends and family, particularly my parents, who have supported me throughout this experience. Their kindness and compassion made the impossible enjoyable, thank you Zoe, Dorey, Xani, Lital, Michelle, Jessie, Elizabeth, Marc, Mel, Jessica, Jo Elin, Trish, Anne, Brian, and Kirby. v I am so grateful to my peer debriefers for their insights and patience. Finally, I must thank the woman who made this work possible—Mama Natural. Thank you for sharing so much of yourself. vi TABLE OF CONTENTS LIST OF TABLES ..................................................................................................................... XII LIST OF FIGURES .................................................................................................................. XIII CHAPTER 1: LITERATURE REVIEW ........................................................................................... 1 1.1 Introduction .................................................................................................................................. 1 1.2 Phenomenon of Interest ................................................................................................................ 1 1.3 Literature Review .......................................................................................................................... 3 CHAPTER 2: PROPOSED STUDY ............................................................................................... 7 2.1 Purpose of this study ..................................................................................................................... 7 Significance of the study ..................................................................................................................... 8 2.3 Methodological Design ................................................................................................................ 11 2.3.1 Theoretical lens ...................................................................................................................... 11 2.4 Proposed case ............................................................................................................................. 13 2.4.1 “A single case” ........................................................................................................................ 19 2.5 Sources of evidence ..................................................................................................................... 21 2.6 Operationalizing the questions .................................................................................................... 24 2.7 Formal Data Collection Techniques .............................................................................................. 25 2.8 Formal Data Analysis Techniques ................................................................................................. 27 2.8.1 Digital ethnography ................................................................................................................ 28 2.8.2 Qualitative content analysis: Inductive coding analytic memo writing ................................. 30 2.8.3 Quantitative content analysis ................................................................................................ 30 vii 2.8.4 Metrics, impact, story ............................................................................................................ 31 2.9 Summary .................................................................................................................................... 32 2.9.1 Ethical considerations—Anonymizing the case ..................................................................... 32 2.9.2 Institutional Review Board ..................................................................................................... 33 2.10 Challenges ................................................................................................................................. 33 2.10.1 Debriefing ............................................................................................................................. 34 2.10.2 Researcher as instrument .................................................................................................... 35 2.11 Impact ...................................................................................................................................... 36 CHAPTER 3: METHODS ......................................................................................................... 38 3.1 Summary of Data Collected .......................................................................................................... 38 3.2 First Phase of Data Collection: ...................................................................................................... 39 3.2.1 Comment Collection Rationale .............................................................................................. 41 3.2.3 Conclusion of first phase ........................................................................................................ 42 3.3 Secondary Phases of Data Collection ............................................................................................ 42 3.3.1 Review of videos on YouTube but not on Blog ...................................................................... 42 3.3.2 Coding of blog posts ............................................................................................................... 43 3.4 Artifacts ...................................................................................................................................... 43 3.5 Information Used ........................................................................................................................ 44 3.6 Evaluating the scholarly information used .................................................................................... 45 3.7 Mama Natural’s Network ............................................................................................................ 45 3.8 Statistical
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