Lived Experience of Adolescents with Chronic Pain

190 Pages·2017·4.3 MB·English

Nova Southeastern University
NSUWorks
Occupational Terapy Program Student Teses,
Department of Occupational Terapy
Dissertations and Capstones
7-3-2016
Lived Experience of Adolescents with Chronic
Pain: A Phenomenological Study
Ryan Christopher Suder
Nova Southeastern University
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THE LIVED EXPERIENCE OF ADOLESCENTS WITH CHRONIC PAIN: A
PHENOMENOLOGICAL STUDY

by

Ryan Suder

Submitted in partial fulfillment of the requirements for the degree of
Doctor of Philosophy in Occupational Therapy
Occupational Therapy Department
College of Allied Health and Nursing
Nova Southeastern University
Fort Lauderdale, Florida 33328

June 2016
ProQuest Number: 10190679
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NOVA SOUTHEASTERN UNIVERSITY
HEALTH PROFESSIONS DIVISION
COLLEGE OF HEALTH CARE SCIENCES
OCCUPATIONAL THERAPY DEPARTMENT
FORT LAUDERDALE, FL 33328

This dissertation, written by Ryan Suder under direction of his
Dissertation Committee, and approved by all its members, has been presented and
accepted in partial fulfillment of requirements for the degree of

DOCTOR OF PHILOSOPHY

DISSERTATION COMMITTEE

_______________________________________ __________________
Cathy Peirce, Ph.D., OTR/L Date
Chairperson of Dissertation Committee

_______________________________________ __________________
Kristin Winston, Ph.D., OTR/L Date
Dissertation Committee Member

_______________________________________ __________________
Susan Bazyk, Ph.D., OTR/L, FAOTA Date
Dissertation Committee Member
NOVA SOUTHEASTERN UNIVERSITY
HEALTH PROFESSIONS DIVISION
COLLEGE OF HEALTH CARE SCIENCES
FORT LAUDERDALE, FL 33328

Certification

We hereby certify that this dissertation, submitted by Ryan Suder, conforms to
acceptable standards and is fully adequate in scope and quality to fulfill the
dissertation requirement for the Doctor of Philosophy degree.

Approved

___________________________________ _____________________
Kristin Winston, Ph.D., OTR/L Date
Ph.D. in Occupational Therapy Program Director

___________________________________ _____________________
Wendy Stav, Ph.D., OTR/L, FAOTA Date
Managing Director of Fort Lauderdale Occupational Therapy Programs

___________________________________ _____________________
Peter Taylor, Ph.D. Date
Associate Dean of Academic Affairs

__________________________________ ______________________
Stanley Wilson, PT, Ed.D., CEAS Date
Dean, College of Health Care Sciences
Copyright by Ryan Suder, 2016
All Rights Reserved
Abstract
The purpose of this phenomenological study was to understand the lived experience of
adolescents who live with chronic pain. All 10 participants were between the ages of 13
and 17 and have lived with chronic pain for at least 6 months. Data sources for the study
were two interviews for each participant, participant drawn depictions of their chronic
pain, and researcher journaling. The person-environment-occupation model was used to
frame the research design. The study found four main themes among the data: pain
identity, invisible disease, occupational loss, and uphill climb to regain life. Each theme
described the essence of the common experience of adolescents living with chronic pain.
Occupational therapists can benefit from incorporating this knowledge base into their
practice when providing intervention for individuals living with chronic pain to improve
their overall quality of life and occupational performance.
Keywords: phenomenological, chronic pain, adolescents, lived experience,
occupational therapy, person-environment-occupation model
Acknowledgements
I would like to thank each of my committee members for their patience and diligence in
helping me accomplish this significant feat in my life. I also could not have completed
my doctoral work without the loving support of my husband, Matthew. He stuck with me
through the toughest and most challenging times while completing my doctoral work. I
love you Hon! To my two children, Madison and Riley, your smiling faces got me up
every morning and gave me the drive to see this through to the end. To my Aunt Sharyn
and Grandma Ernie, thank you for supporting me throughout the challenging years of
being in school and gave me the drive to see it through until the end. My father and
stepmother have always been supporters of my educational career. I would like to thank
them both for helping me through the tough times. Although living across the country,
my sister has been a supporter throughout the long and arduous process. Thank you to my
stepfather, Larry, for giving me the inspiration to do whatever was important to me in my
life. He also taught me to not sweat the small stuff and keep life in check. I also could not
have completed this study without the generous support of each participant, allowing me
to learn more about their lives. Lastly, I could never have believed I could accomplish my
doctoral degree without my mother being such a great role model. Before she died, she
always encouraged me to work to my fullest potential and to expand my horizons through
education. She always told me to never give up and continue to try my best. I dedicate
this research to her for always being my biggest supporter. I miss you Mom!
Table of Contents
Title Page ......................................................................................................................................... i
Signature Pages ............................................................................................................................... ii
Copyright ....................................................................................................................................... iv
Abstract ............................................................................................................................................v
Acknowledgements ........................................................................................................................ vi
Table of Contents .......................................................................................................................... vii
List of Tables ................................................................................................................................. ix
List of Figures ..................................................................................................................................x
Chapter 1 ..........................................................................................................................................1
Introduction ................................................................................................................................1
Introduction to the Chapter ..................................................................................................1
Background to the Problem .................................................................................................1
Statement of the Problem .....................................................................................................2
Rationale and Need for Study ..............................................................................................3
Purpose of the Study ............................................................................................................4
Research Questions ..............................................................................................................4
Definition of Terms..............................................................................................................4
Assumptions of the Study ....................................................................................................6
Limitations ...........................................................................................................................7

Chapter 2 ..........................................................................................................................................8
Review of Literature ..................................................................................................................8
Introduction to the Chapter ..................................................................................................8
Person-Environment-Occupation Model .............................................................................8
PEO Model and Chronic Pain ............................................................................................11
PEO Model Strengths and Weaknesses .............................................................................16
Chronic Pain in Adolescents ..............................................................................................18
Psychological and Personality Characteristics...................................................................19
Pain Conditions ..................................................................................................................23
Survivorship .......................................................................................................................24
Occupational Loss ..............................................................................................................25
Occupational Therapy Interventions in Chronic Pain ........................................................26
Critique of Data Collection Methods .................................................................................28
Interviewing Young Populations .......................................................................................30
Participant Artwork ............................................................................................................32
Critique of Research ..........................................................................................................32
Summary of Literature .......................................................................................................34
Reflexivity..........................................................................................................................34

Chapter Three.................................................................................................................................36
Research Design and Methodology .........................................................................................36
Introduction to the Chapter ................................................................................................36
Rationale ............................................................................................................................36
Phenomenology..................................................................................................................37
Procedural Methods ...........................................................................................................40
Strengths and Weaknesses of Design ................................................................................41
Participants .........................................................................................................................42
Instruments and Measures..................................................................................................44
Ethical Considerations and Reviews ..................................................................................47
Study Setting ......................................................................................................................48
Data Collection Procedures ................................................................................................49
Data Analysis .....................................................................................................................50
Format of Presenting Results .............................................................................................53
Summary ............................................................................................................................53

Chapter 4 ........................................................................................................................................55
Findings....................................................................................................................................55
Introduction to the Chapter ................................................................................................55
Data Analysis Results ........................................................................................................56
Researcher's Experience of Data Collection and Bracketing .......................................56
Demographics of the Participants ................................................................................58
Individual Textural and Structural Description of the Experience ..............................59
Participant Artwork ....................................................................................................113
Themes of the Findings ..............................................................................................119
Textural and Structural Description of the Meaning and
Essence of the Experience ...................................................................................120
Summary ..........................................................................................................................129

Chapter 5 ......................................................................................................................................130
Discussion ..............................................................................................................................130
Introduction to the Chapter ..............................................................................................130
Discussion and Interpretation of Results .........................................................................130
Implications for Practice ..................................................................................................140
Implications for Further Research ...................................................................................142
Limitations and Delimitations ..........................................................................................144
Summary ..........................................................................................................................146

References ....................................................................................................................................147

Appendices ...................................................................................................................................162
Appendix A. CCF IRB Approval....................................................................................162
Appendix B. Nova Southeastern University IRB Approval ...........................................163
Appendix C. CCF IRB Amendment ...............................................................................164
Appendix D. Nova Southeastern University IRB Amendment ......................................165
Appendix E. Nova Southeastern University IRB Renewal ............................................166
Appendix F. Recruitment Flyer ......................................................................................167
Appendix G. Parent/Guardian Consent Form .................................................................168
Appendix H. Child Assent Form ....................................................................................174
Appendix I. Interview Guide ..........................................................................................178