EVALUATING THE WORLD HEALTH ORGANIZATION INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH FRAMEWORK AS AN EMPLOYMENT MODEL FOR PEOPLE WITH EPILEPSY by Ying Yuk (Connie) Sung A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy (Rehabilitation Psychology) at the UNIVERSITY OF WISCONSIN-MADISON 2012 EVALUATING THE WORLD HEALTH ORGANIZATION INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH FRAMEWORK AS AN EMPLOYMENT MODEL FOR PEOPLE WITH EPILEPSY Submitted to Graduate School of the University of Wisconsin-Madison in partial fulfillment of the requirements for the degree of Doctor of Philosophy by Ying Yuk (Connie) Sung Date of final oral examination: July 11th, 2012 Month and year degree to be awarded: August 2012 This dissertation is approved by the following members of the Final Oral Committee: Fong Chan, Professor, Rehabilitation Psychology & Special Education Jana Jones, Assistant Professor, Neurology William Hoyt, Professor, Counseling Psychology Norman Berven, Professor, Rehabilitation Psychology & Special Education David Rosenthal, Professor, Rehabilitation Psychology & Special Education Chetwyn Chan, Professor, Rehabilitation Sciences © Copyright by Ying Yuk (Connie) Sung 2012 All Rights Reserved i DEDICATION I dedicate this dissertation to my family, especially to my lovely Mom, Lei Ying Cheung, and Dad, Wan Chu Sung. ii ACKNOWLEDGMENTS I would like to acknowledge all the members of my committee for their contributions to the development and writing of my dissertation: Dr. Fong Chan, Dr. Jana Jones, Dr. Norm Berven, Dr. David Rosenthal, Dr. Bill Hoyt, and Prof. Chetwyn Chan. I deeply appreciate everyone’s contribution to my study, and thank you for your expertise, knowledge, and support. First and foremost, I owe a special debt of gratitude to my doctoral advisor, Dr. Chan, whose commitment and dedication to students and their professional and personal development, as well as his enthusiasm in research, is unwavering and inspiring. Thank you so much, Dr. Chan, for helping me see the “forest” (the big picture) when it was hardly visible and the “branches” (the details) when they were easily overlooked; for encouraging me to write thoughtfully, think critically, and pay attention to details; and for placing faith in my ability. I am also grateful to Dr. Jones for giving me the opportunity to explore new and exciting scholarly areas in epilepsy under an intellectually stimulating environment. Thank you, Dr. Jones, for your mentorship throughout the stages of my clinical and research training, as well as grant writing. Your insights, patience, and energy have allowed me to learn and enjoy the processes. I would also like to delightfully thank Dr. Hoyt for your passion and diligence in empiricism, and for your guidance and assistance in methodological issues and statistical analyses. I am also deeply grateful to have had the opportunity to work with Prof. Chan, whose diligence, wisdom, and commitment to research and teaching are an inspiration to me as I embark on my career. Prof. Chan, you have been an exceptional mentor to me. Dr. Berven, thank you for your kind words and encouragement throughout my studies, and for taking the time to conscientiously review my dissertation work. I aspire to have the diligence and wisdom you so readily offer to students. I also want to thank Dr. Rosenthal for your kindness, your warmth, and your great support. iii I am forever grateful to my family. This achievement would not have been possible without the continued love and support from my parents and sibling. Special thanks to my Mom and Dad for your endless and selfless support, for engendering the drive I needed to accomplish my goals, and for the many opportunities you have provided throughout my life that have opened up my world to new experiences and people. Your encouragement, love, faith, insights, hard work, and persistence have been, without a doubt, primary in shaping my character and central to the achievement of my goals. I would also like to thank my brother, Mike Sung, for the unconditional source of comfort and support you provide, and for taking care of Mom and Dad during my transition through this new phase of life. Finally, to my friends who have endured my preoccupation with graduate school and to those people who befriended me during school, thank you for your friendship and support. I do not think I could have come this far without my friends and wonderful cohort over the years. I want to extend a special thanks to Veronica Muller for your instantaneous friendship. You have been a great study partner, conference companion, and cherished friend. I also want to thank Chia-Chiang, Jacob, Chen-ping, Chung-yi, Jennifer, Mayu, Joseph, John, and Nikki for making my life in Madison fun. Finally, this project would not have been possible without the generous support of the Epilepsy Foundation (EF) and the Rehabilitation Research and Training Center (RRTC), through their funding. My eternal thanks to a considerable group of people from the EF who selflessly contributed to this project. I especially want to thank Arthur Taggart, Jane Meyer, Debbie McGrath, and Susan Upchurch for your support and assistance in providing interesting insights, and for recruiting participants. It has been a privilege and an honor to work with you, who truly reflect dedication to improving the lives of people with epilepsy. I am also grateful to and inspired by the people with epilepsy who participated in my dissertation research. iv TABLE OF CONTENTS Page Abstract………………………………………………………………………………… vii Chapter One: Introduction Statement of the Problem……………………………………………………….. 1 Assumptions and Theoretical Framework……………………………………… 7 Statement of Purpose…………………………………………………………… 10 Significance of This Study……………………………………………………… 11 Chapter Two: Literature Review Epilepsy and Employment Research…………………………………………… 14 Historical Context of the ICF Model…………………………………………… 18 Disability Policy and the ICF Model…………………………………………… 20 Theoretical Framework of the ICF Model……………………………………… 21 Definition of ICF Components…………………………………………………. 22 Implementation of the ICF Framework as an Employment Model…………….. 25 Type of Employment Outcomes………………………………………………... 28 Role of Demographics on Employment………………………………………… 31 Role of Functioning/Severity on Employment…………………………………. 32 Role of Personal Factors on Employment……………………………………… 35 Role of Environmental Factors on Employment……………………………….. 41 Overall Implications……………………………………………………………. 47 Evidence of Application of the ICF Model ……………………………………. 47 Chapter Three: Method Design………………………………………………………..…………………. 50 Procedures………………………………………………………………………. 50 Sample………………………………………………………………………….. 52 Measures………………………………………………………………………… 56 Demographic Questionnaire……………………………………………………. 56 Instrumentation for Predictor Variables………………………………………... 56 v Instrumentation for Outcome Variable…………………………………………. 66 Data Analysis…………………………………………………..……………….. 67 Chapter Four: Results Preliminary Data Screening and Analysis………………………………………. 72 Factor Analysis of Stages of Change–Work Participation……………………… 73 Descriptive Statistics……………………………………………………………. 75 Correlational Analyses………………………………………………………….. 75 Hierarchical Regression Analysis………………………………………………. 78 Mediation Analyses……………………………………………………………... 83 Moderation Analyses……………………………………………………………. 94 Secondary Analysis…………………………………………………………….. 95 Chapter Five: Summary, Discussion, Implications Major Study Findings…………………………………………………………… 98 Relationships between ICF Predictors and Work Participation………… 100 Factor Contributing to Work Participation……………………………... 100 Mediating Factors Between Contextual Factors and Work Participation. 111 Limitations……………………………………………………………………… 113 Clinical Implication in Rehabilitation Counseling Practice…………………….. 116 Implications for Future Research……………………………………………….. 121 Conclusion……………………………………………………………………… 123 References 124 Appendices Appendix A: Institutional Review Board Notice of Approval…………………. 152 Appendix B: Letter of Support…………………………………………………. 154 Appendix C: Promotional Flyer………………………………………………… 156 Appendix D: Email Invite to Participate in Web-based Survey………………... 157 Appendix E: Email Reminders…………………………………………………. 158 Appendix F: Study Information and Consent Form……………………………. 159 Appendix G: Incentive Form…………………………………………………… 162 Appendix H: Study Questionnaire……………………………………………… 163 vi LIST OF FIGURES AND TABLES Page Figure 2.1 Framework of the World Health Organization ICF Model…………….. 8 Table 3.1 Participant Demographic and Disability-Related Characteristics……… 54 Table 3.2 Descriptive Statistics for Study Measures……………………………… 57 Table 4.1 Explorative factor analysis on SOC-WP items…………………………. 74 Table 4.2 Correlations, Means, Standard Deviations for Variables Used in Hierarchical Regression Analyses……………………………………… 76 Table 4.3 Hierarchical Multiple Regression Analyses for Prediction of Work Participation……………………………………………………..……… 79 Table 4.4 Steps in Testing Self-Esteem as a Mediator between Work Skills/Abilities and Work Participation………………………………… 85 Table 4.5 Steps in Testing Perceived Stigma as a Mediator between Work Skills/Abilities and Work Participation………………………………… 86 Table 4.6 Hierarchical Logistic Regression Analyses for Prediction of Employment Status…...………………………………………………… 97 vii ABSTRACT Work is fundamental to the well-being and quality of life of people with epilepsy. However, the employment rate of people with epilepsy is notoriously