Falling Hair and Drilling Bone”: a Phenomenological Inquiry Into the Lives of Adolescents Undergoing Chemotherapy
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“FALLING HAIR AND DRILLING BONE”: A PHENOMENOLOGICAL INQUIRY INTO THE LIVES OF ADOLESCENTS UNDERGOING CHEMOTHERAPY A THESIS Presented to the Faculty of the Graduate School TRINITY UNIVERSITY OF ASIA In Partial Fulfillment of the Requirements for the Degree MASTER OF ARTS IN NURSING Rudolf Cymorr Kirby P. Martinez February 2010 TABLE OF CONTENTS CHAPTERS I. The Problem and Its Setting A Introduction ....................................................................................... 1 B Context of the Study .......................................................................... 6 C Statement of the Problem .................................................................. 9 D Significance of the Study ................................................................... 9 E Scope and Delimitation...................................................................... 16 F Definition of Terms ........................................................................... 18 II. Review of Related Literature and Studies A Introduction to Phenomenological Literature Review ........................ 20 B Related Literature .............................................................................. 20 i. Childhood Cancer ........................................................................ 21 ii. Chemotherapy ............................................................................. 26 iii. Adolescents under illness ............................................................. 30 C Related Studies .................................................................................. 33 i. Foreign Studies ............................................................................ 33 a. Adult Cancer: Needs of Cancer Patients…………… .............. 34 b. Adult Cancer: Effect of Cancer and Treatment ....................... 36 c. Childhood Cancer Related Studies: Quantitative .................... 42 d. Childhood Cancer Related Studies: Qualitative ...................... 46 ii. Local Studies ............................................................................... 55 iii. Justification for the Current Study................................................ 60 III. Methodology A Research Approach: Phenomenology ................................................. 67 B Selection of Co-Researchers .............................................................. 74 C Ways of Gathering the Experiences ................................................... 77 D Process of Reflective Analysis of the Experiences ............................. 81 IV. Results and Discussion A The Co-Researchers and Their Narratives .......................................... 88 B Thematic Representation ................................................................... 123 C Thematic Interlace ............................................................................. 161 i. Themes and Subthemes................................................................ 161 a. I am Normal More than Special (Normal na Bata, Hindi Kakaiba) .......................................... 162 1. Behind the Mask: Who am I Now? (Sa Likod ng Takip, Sino na Ako?) .................................. 163 2. Forbidden but not Forgotten (Pinagbawalan pero di Kinalimutan) .............................. 169 3. New Me: Metamorphosis of Self (Bagong Anyo, Sarili’y Pabago-bago) ............................ 177 b. Complex Chemo: Welcome to My Reality (Chemo Komplikado, Yan ang Totoo)..................................... 189 1. Good News and Bad News: The Amazing Twins (Mabuti at Masamang Balita: Laging Magkasama) ........ 190 2. Needle Here, Needle There, Poke Me Everywhere (Tusok Dito, Tusok Doon, Tusok Panapanahon) ............. 212 3. Chemo Condo: Are You In or Out (Parang Nasa Condo Pagnagchechemo) ......................... 226 c. F4 (family, faith, friends and future): Maintains My Core (Pamilya, Paniniwala, Kaibigan at Kinabukasan: Tagapangalaga ng Katinuan) ................................................. 249 ii. Thematic Resonance with Related Literature ............................... 260 D Thematic Embodiment i. Eidetic Insight.............................................................................. 276 ii. Symbolic Representation ............................................................. 281 E Implication to the Nursing Profession ................................................ 286 V. Creative Synthesis and Future Directions A Creative Synthesis ............................................................................. 292 B Future Directions ............................................................................... 294 BIBLIOGRAPHY APPENDICES A Communication Letters i. Request for Adviser ii. National Children’s Hospital iii. CHILD Haus B Consent Form C Drawings of the Co-Researchers D Related Literatures i. Summary of Studies Reviewed & Cited ii. Topical Summary of Foreign Studies Reviewed iii. Summary of Concepts Supported and Implied from the Result of the Study E Tagalog Version of Narratives F Individual Meaning Units CURRICULUM VITAE LIST OF FIGURES AND TABLES I. Figures A Figure 1: Interrelated Aspects of Adolescence Development ............. 31 B Figure 2: The Process of Reflective Analysis of the Experiences ....... 87 C Figure 3: ”Bound” ............................................................................. 259 D Figure 4: “Normalcy Amidst the Seasons of Change” ........................ 285 II. Tables E Table 1: Summary of difference between descriptive and interpretative phenomenology ........................................................................... 71 F Table 2: Summary of the co-researcher’s profile ................................ 90 ABBREVIATIONS USED IN THE STUDY ACS – American Cancer Society ANC – Actual Neutrophil Count ASCO – American Society of Clinical Oncology BMA – Bone Marrow Aspiration CBC – Complete Blood Count CI – Cancer Institute IUCC - International Union Against Cancer IT – Intrathecal IV – Intravenous NCH – National Children’s Hospital NCI – National Cancer Institute OPD – Out Patient Department PGH – Philippine General Hospital RBC – Red Blood Cell WBC – White Blood Cell WHO – World Health Organization CHEMOTHERAPY In this enclave, The conventions on chemical warfare Have been suspended. There is no tribunal here to intervene. When the Chemo Brigade moves in, You, or the valuable parts of you, Will be annihilated By any means possible. The Chemo Brigade Has a reputation For never taking prisoners. Its commander, General Bones, Is not known as the Inflictor For nothing. You thought it was fun to poison bugs? Well, welcome to Bug Cage City! (Hugh Cook 2007) 1 CHAPTER I THE PROBLEM AND ITS SETTING Introduction “Can I ask you something?” Mark said as he browse upon my Nursing Drug Handbook while I review for my case presentation scheduled that afternoon, for a patient on a far flung ward from where I am now. Mark was my first patient, the first that I have obsessively taken care of way beyond the physical aspect. For him, I defied many of the unwritten rules of my clinical instructors, all for the sake of making him as comfortable as possible. I crossed the boundary of the sacred nurse-patient relationship, of maintaining a strict separation of my life and his. He was my patient, I was his student nurse. It was all that was supposed to be. It was fate that brought us together, the same fate that works in its own mysterious ways of revealing things. He became more than a patient for me, he was my friend and I was his companion. Our lives became an intricate pattern of an elaborate embroidery, deeply intertwined with each other. Unknown was the fact that I unconditionally gave my blood when he needed it most, even amongst his family. I was there during the most difficult moment of his hospital stay for his leukemia, even excusing myself from class just to be there when his IV was being 2 inserted for chemotherapy. I became a family. They confided in me those problem unrevealed by the Nursing Assessment, those that only a family member would understand and appreciate. I was given the rare opportunity to help him from inside out. I became part of his world and him part of mine. “Of course, anything you like”. I replied as I slowly brought down the notes that I was reading, gently looking down at him resting on my lap as I sit on his bed. And as I looked at his young fragile body, I remembered how little by little, cancer and chemotherapy took its toll on him, how he told me one day that his hair was falling out, that he is losing his appetite that he is getting weaker. It was too much for a child to bear. It was even harder for me to watch how this unfolds right before my very eye knowing that my limited knowledge and experience cannot prevent this from happening. “Is it painful to die?” He asked as he looked at me with his innocent eyes, seemingly probing for an honest answer. “Why do you asked?” I responded as fear, anxiety, and shock spiraled down inside me, as if the moment I dreaded the most was becoming a reality. Deep down, I knew this was coming, but I blindly looked the other way, as if denial would do any good. I’ve read his chart, browsed through books and articles, I knew his time was coming to an end… I just wouldn’t accept it. 3 “I overheard the doctors” he said as he turned his face away from me, gently adjusting it as he rested upon my lap. “They said I was not responding to the chemotherapy, that there was nothing more they could do… I have seen mama crying at night…” Then there was a deafening silence. “Maybe