FACTORS AND COPING STRATEGIES THAT IMPACT CHILDREN AND ADOLESCENTS WITH ALOPECIA AREATA: AN EXPLORATORY FACTOR ANALYSIS Janice J. Wolf A Dissertation Submitted to the Graduate Faculty of George Mason University in Partial Fulfillment of The Requirements for the Degree of Doctor of Philosophy Education and Human Development _________ Chair _________ _________ _________ Program Director ____________________________________________ Dean, College of Education and Human Development Date: _________ Spring Semester 2014 George Mason University Fairfax, VA Factors and Coping Strategies that Impact Children and Adolescents with Alopecia Areata: An Exploratory Factor Analysis A Dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy at George Mason University by Janice J. Wolf Masters of Education George Mason University, 2007 Bachelor of Nursing George Mason University, 1984 Bachelor of Business Education Bowling Green State University, 1976 Director: Pamela Hudson Baker, Associate Professor Education and Human Development Spring Semester 2014 George Mason University Fairfax, VA This work is licensed under a creative commons attribution-noderivs 3.0 unported license. ii DEDICATION This research is dedicated to the children and adolescents who are adapting to and managing their altered appearance due to alopecia areata. iii ACKNOWLEDGEMENTS Thank you to my amazing committee. It was a pleasure and honor to work with you. I would like to express my deepest gratitude to Dr. Pam Baker for accepting this challenge, organizing ideas for the project, and mentoring me with patience and understanding. Appreciation also goes to my methodologist, Dr. Galluzzo for his excellent and invaluable guidance in directing this study. Dr. Urban, thank you for your encouragement, medical expertise, and for supporting my effort to change the lives of children and adolescents with alopecia areata. Thanks also to NAAF for their support and accessibility throughout this study. A special thank you to my boys Steve and Doug (and Doug’s wife Kelly) for their loving support, continuous encouragement, and understanding when dinners and family events were missed. Finally, thank you to all my family and friends who supported me on my yearly progress and cheered for my successful completion of this study. iv TABLE OF CONTENTS Page List of Tables ..................................................................................................................... ix List of Figures ................................................................................................................... xii Abstract ............................................................................................................................ xiii 1. Introduction ..................................................................................................................... 1 The Cycle of Alopecia Areata .................................................................................... 3 Children and Adolescents with Alopecia Areata ....................................................... 4 Treatments.................................................................................................................. 8 Statement of the Problem ........................................................................................... 9 Rationale .................................................................................................................. 11 Purpose of the Study ................................................................................................ 13 Research Questions .................................................................................................. 13 Significance of the Study ......................................................................................... 14 Definition of Terms.................................................................................................. 15 Assumptions ............................................................................................................. 16 Delimitations ............................................................................................................ 17 Summary .................................................................................................................. 18 2. Literature Review.......................................................................................................... 19 Characteristics of Alopecia Areata .......................................................................... 20 Alopecia Areata and the Immune System ................................................................ 22 Variations of Alopecia ............................................................................................. 24 Across Genders ........................................................................................................ 25 Potential Impact Factors .......................................................................................... 28 Potential Types of Coping Strategies ....................................................................... 42 Medicinal Treatments ........................................................................................ 42 Alternative Treatments....................................................................................... 45 Cosmetic Cover-up. ........................................................................................... 48 v Community and Outside Support....................................................................... 50 Communication/Technology.............................................................................. 51 Family Support................................................................................................... 52 Summary .................................................................................................................. 57 3. Methods........................................................................................................................ 58 Research Design....................................................................................................... 58 Sampling .................................................................................................................. 60 Ethical Considerations ............................................................................................. 60 Survey Development ................................................................................................ 62 Survey Validation .................................................................................................... 64 Revised Survey ........................................................................................................ 67 Independent Variables ............................................................................................. 68 Dependent Variables ................................................................................................ 69 Piloting of Survey .................................................................................................... 71 Potential Participants ......................................................................................... 72 Procedures .......................................................................................................... 73 Outcomes ........................................................................................................... 74 National Distribution of Survey ............................................................................... 74 Potential Participants ......................................................................................... 75 Procedures. ......................................................................................................... 76 Outcomes. .......................................................................................................... 77 Qualitative Follow-up .............................................................................................. 78 Potential Participants ......................................................................................... 79 Procedures .......................................................................................................... 79 Outcomes ........................................................................................................... 83 Qualitative Reliability and Validity ......................................................................... 84 Data Analysis ........................................................................................................... 85 Summary .................................................................................................................. 90 4. Results .......................................................................................................................... 91 National Study ......................................................................................................... 92 Click-through Rate ................................................................................................... 92 Participants ............................................................................................................... 93 vi Research Question 1 ................................................................................................ 97 Research Question 2 .............................................................................................