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

133 Pages·2017·4.53 MB·English

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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
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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
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© 2013
ELLEN MCLAUGHLIN CARROLL
All Rights Reserved

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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

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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
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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.

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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.
.

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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
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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
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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
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