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The Relationship of Fathers with Sons Who Have

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View metadata, citation and similar papers at core.ac.uk brought to you by CORE provided by The University of Utah: J. Willard Marriott Digital Library THE RELATIONSHIP OF FATHERS WITH SONS WHO HAVE TOURETTE SYNDROME AND THE IMPACT ON THE FAMILY by Calvert F. Cazier A dissertation submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Health Promotion and Education The University of Utah August 2012 Copyright © Calvert F. Cazier 2012 All Rights Reserved The University of Utah Graduate School STATEMENT OF DISSERTATION APPROVAL The dissertation of Calvert F. Cazier has been approved by the following supervisory committee members: Glenn E. Richardson , Chair 5/7/2012 Date Approved Sue Morrow , Member 5/7/2012 Date Approved Patrick Panos , Member 5/7/2012 Date Approved Richard Ferre , Member 5/7/2012 Date Approved Julia Franklin Summerhays , Member 5/7/2012 Date Approved and by Les Chatelain , Chair of the Department of Health Promotion and Education and by Charles A. Wight, Dean of The Graduate School. ABSTRACT Tourette syndrome (TS) is a misunderstood complex, chronic, neuropsychiatric disorder known for both involuntary muscle and vocal tics which manifests itself in childhood and usually has a lifelong duration. Little research has been done on how families are impacted by having a child with (TS) and even less has been done on how fathers in particular are affected. Dealing with a child who has TS can be stressful to the parents as well as to the dynamics of and the family. While children with TS have many obvious challenges, their families face similar problems which may not be so readily apparent. This study used qualitative research methods to study the relationships of fathers and their sons with TS. Qualitative research is useful for examining aspects of social life that are not easily accessed through quantitative data collection techniques. The overarching finding which emerged in this study was that the fathers experienced a waxing and waning pattern of response in the face of an uncertain future which seemed to be influenced by the intrinsic nature of TS. They reported experiences along a continuum of success, ranging from effective responses which seemed to lead to personal growth and resilience and stronger relationships with their sons and families, to ineffective responses, difficulty developing personally, and relationship strain or deterioration. The waxing and waning pattern of responses occurred along five major themes: 1) the question of normalcy, 2) pride in son, 3) hope in the future, 4) acceptance, and 5) role satisfaction. Each father had his own unique challenges to his son with TS which impacted his relationships with this son, his other children, and his wife. As a whole these fathers appeared to find effective ways over time to develop strong family relationships. Factors which seemed to propel these fathers forward included a clear understanding of and commitment to their roles as a father and husband and the successful development of a strong husband and wife team. iv TABLE OF CONTENTS ABSTRACT ................................................................................................................. iii LIST OF FIGURES ..................................................................................................... vii ACKNOWLEDGEMENTS ......................................................................................... viii Chapters 1. INTRODUCTION AND REVIEW OF LITERATURE ....................................... 1 Introduction to the Problem ................................................................................... 1 Overview of Tourette Syndrome ........................................................................... 4 Family Systems Theory and Resiliency ................................................................. 22 Purpose of the Study .............................................................................................. 27 Research Questions ................................................................................................ 28 Rationale for Qualitative Methods ......................................................................... 28 Data Analysis ......................................................................................................... 33 Explanation of Reporting Format .......................................................................... 41 Appendix A: Interview Question Guide ................................................................ 43 References .............................................................................................................. 46 2. THE RELATIONSHIP OF FATHERS WITH SONS WHO HAVE TOURETTE SYNDROME AND THE IMPACT ON THE FAMILY ................. 54 Abstract .................................................................................................................. 54 Introduction ............................................................................................................ 55 Purpose ................................................................................................................... 56 Literature Review................................................................................................... 56 Methods.................................................................................................................. 57 Results .................................................................................................................... 62 Discussion .............................................................................................................. 90 Appendix A: Selection Criteria .............................................................................. 95 Appendix B: Interview Question Guide ................................................................ 97 References .............................................................................................................. 100 3. APPLICATION OF THE METATHEORY OF RESILIENCE AND RESILIENCY IN FAMILIES WITH CHILDREN WITH TOURETTE SYNDROME: WAVES ONE AND TWO.................................................................................................... 102 Abstract ................................................................................................................ 102 Introduction .......................................................................................................... 103 Purpose ................................................................................................................. 104 Overview of TS-Related Disruptive Challenges .................................................. 104 The First Wave of Resiliency Inquiry: Resilient Qualities .................................. 106 The Second Wave of Resiliency Inquiry: Resiliency ........................................... 109 Discussion ............................................................................................................ 121 References .............................................................................................................. 123 4. APPLICATION OF THE METATHEORY OF RESILIENCE AND RESILIENCY IN FAMILIES WITH CHILDREN WITH TOURETTE SYNDROME: WAVE THREE ................................................................................................................... 126 Abstract .................................................................................................................. 126 Introduction ............................................................................................................ 127 The First and Second Waves of Resiliency Inquiry ............................................... 128 The Third Wave of Resiliency Inquiry .................................................................. 129 Integrating Resilient Qualities, Resiliency, and Resilience ................................... 135 Discussion .............................................................................................................. 140 References .............................................................................................................. 141 5. CONCLUSION ...................................................................................................... 143 Review of Findings ................................................................................................ 143 Suggestions for Future Research ........................................................................... 145 References .............................................................................................................. 147 vi LIST OF FIGURES Figure Page 1. Richardson’s resiliency mapping model 2002 ..............................................27 2. Father’s waxing and waning responses .........................................................64 3. Richardson’s resiliency mapping model 2002 ..............................................111 4. TS resiliency mapping model: description of a family’s journey: single tic ........................................................................................................114 5. TS resiliency mapping model: description of a family’s journey: multiple tics ...................................................................................................115 6. TS adapted resiliency mapping model: accounting for secondary Challenges ......................................................................................................117
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