A CASE STUDY: THE SCHOOL EXPERIENCES OF CHILDREN WITH LIFE-THREATENING FOOD-INDUCED ALLERGIES AND ANAPHYLAXIS AS PERCEIVED BY CHILDREN, PARENTS, TEACHERS, AND A SCHOOL ADMINISTRATOR TIFFANY A. ROBERTS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY NIPISSING UNIVERSITY FACULTY OF EDUCATION NORTH BAY, ONTARIO, CANADA ©Tiffany A. Roberts May 2017 ii Abstract The purpose of my qualitative case study research was to examine the perceptions of children/teens, parents, teachers, and administrators around the school experiences of students with life-threatening food-induced allergies and anaphylaxis. In addition, I wondered how participants‘ lived experiences might serve to ameliorate educational policies and practices in schools so that all students who have food allergies and anaphylaxis can feel safe, cared for, and be available for learning. Using a purposive sample of convenience, 10 participants (including 3 children/teens, 4 parents, 2 teachers, and 1 administrator), were invited and agreed to participate in audio-recorded in-depth individual interviews around my study topic. My interpretation and analysis of interview data depicted complex connections between and among the following themes: allergy identity, safe-care strategies, labels and labelling, allergy communications, and ethical disconnects. Three recurring subthemes—time, trust, and transition, also emerged and are threaded throughout. At times, intense emotions punctuate the discourse as empathetic signposts for the reader. I conclude the study with suggestions for families and school communities so all might better support the physical, social, emotional, and academic needs of those living with life-threatening food allergies and anaphylaxis. “Allergy sufferers have special powers of perception.” ~ Gregg Mitman iii Acknowledgements CHILD and TEEN STUDY PARTICIPANTS ~ for your courage to share your stories PARENT, TEACHER, and ADMINISTRATOR STUDY PARTICIPANTS ~ for your openness and honesty DR. HEATHER RINTOUL ~ for your wisdom, guidance, and friendship DR. CAROLYN CRIPPEN, DR. NANCY FENTON, and DR. CARLO RICCI ~ for your genuine interest and encouragement DR. LORRAINE FROST and DR. ANTHONY NORMORE ~ for your thoughtful comments and enthusiastic support VALERIE and GORDON ~ for your exemplary ethics of care and work GARY ~ for time lost and time found RYAN ~ for your generous gifts of patience and understanding ASHLEY ~ for your demonstrations of strength and resilience iv Table of Contents Page Abstract .................................................................................................................................... iii Acknowledgements .................................................................................................................... iv CHAPTER ONE: INTRODUCTION TO THE STUDY ............................................................. 1 Study Overview ............................................................................................................... 2 Definition of Terms ......................................................................................................... 2 Introduction: My Context ............................................................................................... 5 Purpose.......................................................................................................................... 17 Research Questions ....................................................................................................... 17 Rationale for the Study .................................................................................................. 18 Organization of the Study .............................................................................................. 20 CHAPTER TWO: A REVIEW OF THE RELEVANT LITERATURE .................................... 23 Managing Allergy and Anaphylaxis ............................................................................... 23 Allergy and Anaphylaxis ............................................................................................... 24 A Day in the Life: Allergy, Anaphylaxis, and the Family .............................................. 51 Allergy and Anaphylaxis go to School ........................................................................... 59 Summary of Chapter Two .............................................................................................. 70 CHAPTER THREE: METHODOLOGY AND METHOD ....................................................... 73 I Situate Myself in the Study .......................................................................................... 74 Qualitative Research ...................................................................................................... 75 Interviewing in Qualitative Research ............................................................................. 76 Case Study Research ..................................................................................................... 77 Research Ethics Board: Permission to Conduct the Study ............................................. 78 Ethical Considerations ................................................................................................... 79 v Participant Sample ......................................................................................................... 84 Interview Participants: Introductory Profiles ................................................................. 90 Interview Settings .......................................................................................................... 95 Data Collection .............................................................................................................. 97 Validity ....................................................................................................................... 105 Procedures: Strategies for Data Interpretation and Analysis ........................................ 106 Summary of Chapter Three .......................................................................................... 110 CHAPTER FOUR: DATA INTERPRETATION AND ANALYSIS ...................................... 112 Researcher Interpretation ............................................................................................. 112 Data Interpretation ....................................................................................................... 113 An Individual and a Shared Allergy Identity ................................................................ 113 Responsibility: Rules, Routines, and Safe-Care Strategies .......................................... 126 Labels and Labelling ................................................................................................... 149 Communicating Allergy .............................................................................................. 159 Dis/connect: Ethical Leadership and Decision-Making ............................................... 184 Summary of Chapter Four ........................................................................................... 200 CHAPTER FIVE: REVIEW OF MY STUDY; IMPLICATIONS FOR PRACTICE; IMPORTANCE, STRENGTHS, AND LIMITATIONS OF THE STUDY; RECOMMENDATIONS FOR FUTURE RESEARCH; AND MY FINAL THOUGHTS ....... 201 Review of the Study from my Perspective as a Mother ................................................ 201 Implications for Practice: Ethical Calls to Action ........................................................ 217 Possible Importance of the Study ................................................................................. 221 Strengths of My Study ................................................................................................. 223 Limitations of My Study .............................................................................................. 225 My Recommendations for Future Research ................................................................. 230 My Final Thoughts ...................................................................................................... 233 References .............................................................................................................................. 234 vi Appendix A: Nipissing University Research Ethics Board Letter of Approval ........................ 267 Appendix B: General Schedule of Interview Questions for Children ...................................... 268 Appendix C: General Schedule of Interview Questions for Teens ........................................... 269 Appendix D: General Schedule of Interview Questions for Parents ........................................ 270 Appendix E: General Schedule of Interview Questions for Teachers ...................................... 271 Appendix F: General Schedule of Interview Questions for Administrators ............................. 272 Appendix G: Extended Definitions of Minor Terminology as Used in the Dissertation ........... 273 vii CHAPTER ONE: INTRODUCTION TO THE STUDY In Chapter One I begin by providing a brief overview of my research study around the school experiences of children/teens with life-threatening food-induced allergies and anaphylaxis. I have included immediately, for the reader, a discussion of the more significant terms I will use in the dissertation, as I feel a common understanding of the medical terminology is essential. Specifically, I provide for the reader a discussion of five major allergy-related terms