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The Lived Experiences of Transition to Adult Healthcare in Young Adults with Cerebral Palsy PDF

133 Pages·2017·4.53 MB·English
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City University of New York (CUNY) CUNY Academic Works All Dissertations, Theses, and Capstone Dissertations, Theses, and Capstone Projects Projects 2013 The Lived Experiences of Transition to Adult Healthcare in Young Adults with Cerebral Palsy Ellen McLaughlin Carroll Graduate Center, City University of New York How does access to this work beneft you? Let us know! More information about this work at: https://academicworks.cuny.edu/gc_etds/1717 Discover additional works at: https://academicworks.cuny.edu This work is made publicly available by the City University of New York (CUNY). Contact: THE LIVED EXPERIENCES OF TRANSITION TO ADULT HEALTHCARE IN YOUNG ADULTS WITH CEREBRAL PALSY By ELLEN MCLAUGHLIN CARROLL MSN, RN, CPNP A dissertation submitted to the Graduate Faculty in Nursing Science in partial fulfillment of the requirements for the degree of Doctor of Philosophy, The City University of New York 2013 ii © 2013 ELLEN MCLAUGHLIN CARROLL All Rights Reserved ii iii This manuscript has been read and accepted for the Graduate Faculty in Nursing in satisfaction of the dissertation requirement of the Degree of Doctor of Philosophy Carol Roye _________________________ _______________________________ Date Chair of Examining Committee Keville Frederickson _________________________ __________________________________ Date Executive Officer Vidette Todaro Franceschi__________________________________________________ David Roye ____________________________________________________________ William Ebenstein_________________________________________________________ Supervisory Committee THE CITY UNIVERSITY OF NEW YORK iii iv ABSTRACT THE LIVED EXPERIENCES OF TRANSITION TO ADULT HEALTHCARE IN YOUNG ADULTS WITH CEREBRAL PALSY By: ELLEN MCLAUGHLIN CARROLL MSN, RN, CPNP Advisor: Professor Carol Roye Background: Health Care Transition (HCT) describes the purposeful, planned movement of adolescents from child to adult-orientated care. The purpose of this phenomenological study is to uncover the meaning of transition to adult centered care as experienced by Young Adults with Cerebral Palsy (YA-CP) through the research question: What are the lived experiences of young adults with cerebral palsy transitioning from pediatric to adult healthcare? Method: 6 females and 3 males, aged 19 -25 years of age, who identified as carrying the diagnosis of cerebral palsy without cognitive impairment were interviewed. Giorgi’s (1985) method for analysis of phenomenology was the framework for the study and guided the phenomenological reduction. Results: The lived experiences of YA-CPs transition to adult health care, expressed from the data is expert novices with evidence and experience based expectations, negotiating new systems (effective/ineffective) interdependently (parents and provider support) accepting less than was expected. Conclusions: More information and support is needed for the YA-CP during transition to ensure a well-organized move to appropriate adult-oriented health care that is considerate of the lifelong impact of the disorder. Nursing's role as advocate, mentor and guide can optimize the individual’s response to the transition process. Keywords: Health Care Transition (HCT), Qualitative, Phenomenology, Meleis transition theory iv v Acknowledgements I am grateful to have had many beside me and in my corner over the course of this journey. A special thanks to Carol Roye, my dissertation sponsor, you kept me on track and inspired the focus of this study; your expertise in the research process and patience with me were instrumental to my success. Keville Frederickson, your intelligence, savvy and spirit kept me going throughout this adventure, knowing you were behind me made all of the difference. Vidette Todaro Franceschi, thanks for always taking the time to check on me and to check my work. To the rest of my committee, William Ebenstein, Laura Hayman and David Roye I extend my deepest gratitude and respect for your time and consideration. It has been an honor to be in the company of the many wonderful faculty of the Graduate Center's Nursing Science Department, who have enriched my life by sharing their expertise. God bless Helen Lerner, who recommended me to the doctoral program. The first cohort experience was really something special. Mary, Christine, Karen, Miriam, Marie and Dawn we broke bread often and sustained each other in the process. I will never forget the support, energy and inspiration given so generously. Thank you to the staffs at Columbia's Cerebral Palsy Center and Westchester Institute for Human Development who shared the message so that a sample for this study was possible. To the participants in the study I am eternally grateful and feel so lucky to have come to know you and your stories. I would especially like to thank my husband Michael for his encouragement and support, all I need is to be by your side. The joys of my life, my children, James, Sara and Michael have cheered me on to my best work -I thank God for you every day. Thank you. v vi Dedication This dissertation is dedicated to my mother, Mary Ita McLaughlin nee Corkery, also known as Mae. Since October 2008 I have been without my mother and I miss her everyday. I recall one time, as a little girl riding on the New York City bus beside her when she stood up to talk to a lost traveler on the bus. I was a little embarrassed that she was talking to a stranger, but in a few short exchanges she shared what she knew and put the other person at ease. Upon returning to the seat next to me she said,” You should always be willing to talk, you never know when something you share might help someone else". In that simple exchange she formatted my life's mission as a person who cares, helps, get's involved, teaches and nurtures. She made me the nurse I am today. . vi vii TABLE OF CONTENTS ABSTRACT iv ACKNOWLEDGEMENTS v DEDICATION vi CHAPTER I: AIM OF THE STUDY 1 Introduction 1 Aim of Study & Research Question 3 Phenomenon of Interest 3 Justification for Studying Phenomenon 4 Relevance to Nursing 6 Assumptions and Biases 7 Summary 8 CHAPTER II: EVOLUTION OF THE STUDY Introduction 10 Rationale 10 Historical Context 11 Theoretical Context 13 Experiential Context 15 Summary 16 CHAPTER III: THE PHENOMENOLOGICAL METHOD Introduction 18 Background of the Phenomenological Method 18 Description of the Method 20 vii viii Giorgi's Existential Phenomenological Method 20 Sample and Recruitment 21 Summary 23 CHAPTER IV: APPLICATION OF THE PHENOMENOLOGICAL METHOD Aim of the Method 24 Procedure 24 Data Analysis 26 Reliability and Validity 29 Summary 29 CHAPTER V: FINDINGS OF THE INQUIRY Introduction 30 Setting 30 Study Sample 31 Description of the Participants 31 Data Analysis 52 Meaning Units Identified 53 Synthesized Transformed Meaning Units 54 Identification of the Essences 55 Essence 1: Expert Novices 56 Essence 2: Evidence/Experience Based Expectations 59 Essence 3: Negotiating New Systems 61 Essence 4: Interdependence 64 Essence 5: Accepting Less 67 viii ix Synthesis of the Structure of the Experience 69 Summary 69 The Structure reflected in Art 71 Participant's Prose 72 CHAPTER VI: REFLECTIONS ON THE RESEARCH FINDINGS 73 Introduction 73 Synthesis of the Data 73 Reflections Using a Nursing Model 81 Reflections of the Researcher 87 Limitations of the Study 89 Summary of Discussion 90 Implications for Nursing 92 Implications for Future Research 94 Summary 95 APPENDICES 96 A: Research Flyer 97 B: Research Postcard 98 C: Letter of Support CCPC 99 D: Letter of Support WHID 100 E: Consent for Participation (1) 101 F: Consent for Participation (2) 103 REFERENCES 105 ix

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