Wayne State University Wayne State University Dissertations 1-1-2015 Online Communities For People Who Stutter: An Ethnographic Study Of A Facebook Social Networking Support Group Erik X. Raj Wayne State University, Follow this and additional works at: http://digitalcommons.wayne.edu/oa_dissertations Recommended Citation Raj, Erik X., "Online Communities For People Who Stutter: An Ethnographic Study Of A Facebook Social Networking Support Group" (2015). Wayne State University Dissertations. Paper 1163. This Open Access Dissertation is brought to you for free and open access by DigitalCommons@WayneState. It has been accepted for inclusion in Wayne State University Dissertations by an authorized administrator of DigitalCommons@WayneState. ONLINE COMMUNITIES FOR PEOPLE WHO STUTTER: AN ETHNOGRAPHIC STUDY OF A FACEBOOK SOCIAL NETWORKING SUPPORT GROUP by ERIK X. RAJ DISSERTATION Submitted to the Graduate School of Wayne State University, Detroit, Michigan in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY 2015 MAJOR: COMMUNICATIONS SCIENCES AND DISORDERS Approved By: ______________________________________ Advisor Date ______________________________________ ______________________________________ ______________________________________ ______________________________________ © COPYRIGHT BY ERIK X. RAJ 2015 All Rights Reserved DEDICATION This dissertation is dedicated to my wife, Natalie Dallavalle, and people who stutter. ii ACKNOWLEDGMENTS This dissertation is the result of the support, guidance, and encouragement of many individuals. I would like to thank the 9 participants who were members of the stuttering support Facebook group that was created. I appreciate your willingness to be a part of this study. The words that you all have shared have truly shed new light on the power of digitally connecting with one another to share thoughts, feelings, experiences, and information about stuttering. Thank you to my committee members: Dr. Derek Daniels, Dr. Shelly Jo Kraft, Dr. Michael Barbour, Dr. Gregory Zvric, and Mrs. Jessica Killenberg-Muzik. You provided me with an insurmountable amount of feedback and brilliant comments that have helped to sculpt this dissertation. Also, a special thank you to my advisor, Dr. Derek Daniels: Your knowledge and friendship have helped me to grow as a speech-language pathologist and a research scientist. You have inspired me in so many ways, and I look forward to future collaborations. I send thanks to the Department of Communication Sciences and Disorders at Wayne State University for providing me with the Graduate Student Scholarship during my years of academic study. I would also like to thank the American Speech-Language- Hearing Foundation for awarding me the Graduate Student Scholarship during my last year of doctoral studies. To my family and to my wife, Natalie Dallavalle, thank you for your never-ending love and support through the years. iii Finally, I would like to send thanks to four individuals from Misericordia University who have continued to encourage me throughout my post-masters education: Drs. Glen Tellis, Cari Tellis, Hunter Manasco, and Mrs. Lori Cimino. Misericordia University has, without a doubt, set the foundation for who I am today as a speech-language pathologist. Without the four of you, I would not be here today. You rock! iv TABLE OF CONTENTS Dedication .......................................................................................................................... ii Acknowledgments ............................................................................................................ iii List of Tables ..................................................................................................................... x List of Figures ................................................................................................................... xi Chapter 1: Introduction ................................................................................................... 1 Definition of Terms................................................................................................. 7 Chapter 2: Review of Literature ................................................................................... 10 Stuttering as a Multidimensional Disorder ........................................................... 10 Overt Aspects of Stuttering ....................................................................... 11 Covert Aspects of Stuttering ..................................................................... 13 Openly Talking About Talking ............................................................................. 16 Psychosocial Aspects of Stuttering ....................................................................... 17 The Legitimacy of Psychosocial Evidence ............................................... 22 Support Group Environments ............................................................................... 24 Online Support Environments Unrelated to Communication Difficulties ................................................................................................ 25 Online Support Environments Related to Communication Difficulties ................................................................................................ 27 An Inside Look at Social Networking Sites Today .............................................. 31 Digital Sharing Online for People Who Stutter .................................................... 34 Web 1.0 Digital Sharing Before the Year 2000 ........................................ 35 v Web 2.0 Digital Sharing After the Year 2000 .......................................... 38 Benefits Associated With Digital Sharing Via Social Networking Sites ............. 41 Challenges Associated With Digital Sharing Via Social Networking Sites ......... 45 Statement of the Problem ...................................................................................... 47 Purpose of Study ................................................................................................... 48 Research Questions ............................................................................................... 48 Chapter 3: Method .......................................................................................................... 50 Overview of Methodology .................................................................................... 50 Development of the Participant Site Selection ..................................................... 52 Participants Recruited for the Study ..................................................................... 60 Data Collection Methods ...................................................................................... 62 Data Analysis Methods ......................................................................................... 67 Credibility and Trustworthiness (Validity and Reliability) .................................. 70 Ethical Framework ................................................................................................ 73 Significance of Study ............................................................................................ 73 Subjectivity Statement .......................................................................................... 74 Chapter 4: Results........................................................................................................... 76 Themes Related to Benefits .................................................................................. 78 Sense of Family......................................................................................... 78 Feelings of Safety and Acceptance ........................................................... 78 Thought-Provoking ................................................................................... 79 Convenience Through Accessibility ......................................................... 80 vi Supplemental............................................................................................. 80 Themes Related to Challenges .............................................................................. 81 Limited Number of Members ................................................................... 81 Sense of Disconnect .................................................................................. 82 Fear of Misinterpretations ......................................................................... 82 Lack of Instantaneous Communication .................................................... 83 Lack of Any Responses to a Question ...................................................... 83 Themes Related to Support Through Providing Information ............................... 85 Upcoming Meetings .................................................................................. 85 Internet Articles ........................................................................................ 87 Themes Related to Support Through Posing Questions ....................................... 91 Weekly Conversation Starters................................................................... 91 Social Gathering Questions....................................................................... 92 Themes Related to Support Through Giving Encouragement .............................. 93 Text-Based ................................................................................................ 93 Like Button-Based ...................................................................................