The Experiences of Male Adolescents Living With Pectus Excavatum Deformities Kristine Anne Edgington B.A., The Kings University College, 200 1 A Thesis Submitted in Partial Fulfillment of the Requirements for the Degree of MASTER OF ARTS In the Department of Educational Psychology and Leadership Studies O Kristine Anne Edgmgton University of Victoria All rights reserved. This thesis may not be reproduced in whole or in part, by photocopy or other means, without the permission of the author. Experiences of Pectus Excavatum ii Supervisor: Dr. Jillian Roberts Abstract Research examining social and psychological impacts of physical deformities shows that a difference in one's appearance affects the ways in which others perceive and interact with that indlvidual. Additional outcomes include anxiety, depression and decreased self-esteem. Research consistently shows that there is a wide variation in responses to one's own physical deformity. The present study employed phenomenology to explore the experiences of six male adolescents living with a pectus excavatum deformity, and more specifically examined the ways in which deformity affects these individuals7q uality of life. The study also examined the decision process the participants engaged in while deciding to undergo the Nuss surgical procedure for the correction of their physical deformity. Semi-structured interviews were conducted, transcribed verbatim, and thematically analyzed. Results indicate that these adolescents' social contexts and psychological well-being are affected by their physical deformity. Moreover, information regarding their deformity and available corrective options empowered these youth to take control over their pectus excavatum. Supervisor: Dr. Jillian Roberts, (Department of Educational Psychology and Leadership Studies) Experiences of Pectus Excavatum iii Table of Contents Title Page .................................................................................... i . . Abstract ...................................................................................... 11 ... Table of Contents ............................................................................ 111 List of Tables ................................................................................ vii ... Acknowledgements ......................................................................... WI Dedication .................................................................................... ix Chapter One: Introduction ................................................................. 1 Overview ............................................................................ 1 Statement of the Problem .......................................................... 3 Purpose of the Study ............................................................... 3 Definitions of Terns ............................................................... 4 Boundaries of the Study ......................................................... 5 Summary ............................................................................ 5 Chapter Two: Literature Review ......................................................... 7 Social Effects: The "view from the outside" ................................... 8 Psychological Effects: The "view from the inside" ........................... 9 Variation in Response to Disfigurement ......................................... 10 Severity and visibility ......................................................... 10 Age .............................................................................. 11 Self.concept. values. competency. anxiety. attributions. and social skills. . 12 Social support .................................................................. 14 Coping Strategies .................................................................. 15 Experiences of Pectus Excavaturn iv Pectus Excavatum ................................................................. Intervention ......................................................................... Quality of Life ..................................................................... Need for Further Research ....................................................... Summary ........................................................................... Chapter Three: Methodology ............................................................. General ApproachlParadigm ..................................................... Research Design ................................................................... Entering Assumptions ............................................................. Participants ......................................................................... Interviews ........................................................................... Data Collection ..................................................................... Procedure for Data Analysis ...................................................... Rigour ............................................................................... Ethical Considerations ............................................................ Summary ............................................................................ Chapter Four: Results ...................................................................... Participant Profile .................................................................. Essential Structure of the Experience ........................................... Categorical. Cluster. and Thematic Structures ................................. Category One: Social Context .................................................... Theme cluster one: Social belonging ........................................ Theme cluster two: Social reactions ........................................ 40 Experiences of Pectus Excavahun v Theme cluster three: Social limitations ..................................... 43 Category Two: Empowerment and Control ..................................... 46 Theme cluster one: Lack of knowledge .................................... 47 Theme cluster two: Knowledge and personal responsibility ............ 48 Theme cluster three: External impacts ..................................... 50 Category Three: Well-Being and Satisfaction ................................. 52 Theme cluster one: Coping strategies ...................................... 53 Theme cluster two: Social support .......................................... 55 Theme cluster three: Satisfaction ............................................ 56 Theme cluster four: Negative affect ......................................... 58 Category Four: Surgery ........................................................... 59 Theme cluster one: Information ............................................. 60 Theme cluster two: Catalyst for correction ................................ 61 Theme cluster three: Issues surrounding surgery .......................... 66 Theme cluster four: Post surgery expectations. ............................ 69 Summary ............................................................................ 71 Chapter Five: Discussion .................................................................. 72 Summary ............................................................................ 72 Research Contributions ........................................................... 72 Purpose one: Examine adolescents' experiences of pectus excavatum .. 73 Purpose two: Examine adolescents' surgery decisions and expectations.76 Limitations ..........................................................................7 9 Implications ......................................................................... 80 Experiences of Pectus Excavatum vi Directions for Future Research ................................................... 83 Final Summary ..................................................................... 84 References .................................................................................... 86 Appendix A: Interview Guide ............................................................ 90 Appendix B: Informed Consent Form ................................................... 91 Appendix C: Ethics Approval Certificate ............................................... 94 Experiences of Pectus Excavatum vii List of Tables Table 1: Categories and Clusters ......................................................... 37 Table 2: Category One: Social Context ................................................. 38 Table 3: Category Two: Empowerment and Control .................................. 46 Table 4: Category Three: Well-Being and Satisfaction ............................... 53 Table 5: Category Four: Surgery ......................................................... 60 Experiences of Pectus Excavatum viii Acknowledgements This research would not have been possible without the six young men who participated, along with their families. I thank you for welcoming me into your homes, and for your willingness to share your stories. I would also like to acknowledge my supervisor, Dr. Jillian Roberts. I am thankful for your direction and support over the past two years. I have so appreciated your encouragement and patience. I would like to express my appreciation to Shelley, Kendra, and Lia for sharing your wisdom and always being willing to listen. Finally I would like to express my sincere gratitude to Tammy. Thank you for sharing with me in the frustrations, confusions and celebrations of this process. Experiences of Pectus Excavaturn ix Dedication I dedicate this thesis to my husband, Jesse. I could not have done this without you. Thank you for your endless encouragement and your tremendous confidence in me. I love you, and I am so gratefwl to have you in my life. I also dedicate th~tso my parents. Thank you for your support and encouragement. Thank you for instilling in me a love of learning and an understanding of the value of education. Chapter One Introduction - Overview It is estimated that one percent of adults live with a physical deformity or disfigurement that affects their ability to lead a normal existence (Thompson & Kent, 2001). Defining disfigurement is a subjective practice as it relies not only on social norms and customs but on individual attitudes and values as well. In a broad sense a disfigurement can be defined as a noticeable difference of appearance (Thompson & Kent, 2001). In general there are three main causes of disfigurement, namely congenital malformations, traumatic events, and diseases, either directly or through treatment. Physical disfigurements are expansive, including cleft lip, pectus deformities, scoliosis, burns, and skin conditions such as acne, vitiligo, port wine stains, or psoriasis to name a few. Although only some of these conditions affect physical functioning, all of them effect some social and psychological aspects of affected individual's lives. Examining the social and psychological effects of living with a physical disfigurement is an active area in research (Clarke, 1999; Thompson & Kent, 200 1). This research primarily examines the effects of various conditions and diseases that cause an individual to appear different in some way. Research focuses on two major areas of inquiry, the first being the effect that physical disfigurement has on social interactions and others' perceptions of an individual (Bernstein, 1990; Liskey-Fitzwater, Moore & Gurel, 1993; Thompson & Kent, 2001). The second area of focus is the effect that disfigurement has on psychological functioning such self-esteem, anxiety, body image and emotional well-being (Einsiedel & Clausner, 1999; Hill-Beuf & Porter, 1984; Kent, 2000; Kent & Keohane, 200 1; Sarimslu, 200 1; Thompson & Kent, 200 1).