HEALTH-RELATED STIGMA IN ADVANCED LUNG CANCER By LEE ANN JARRETT Dissertation ...

173 Pages·2015·2.31 MB·English

by  Lee Ann Jarrett

HEALTH-RELATED STIGMA IN ADVANCED LUNG CANCER

By
LEE ANN JARRETT

Dissertation
Submitted to the Faculty of the
Graduate School of Vanderbilt University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
in
Nursing Science
August, 2015
Nashville, Tennessee

Dr. Sheila Ridner
Dr. Mary Dietrich
Dr. Leora Horn
Dr. Vaughn Sinclair
Dr. Nancy Wells
Copyright © 2015 Lee Ann Jarrett
All Rights Reserved

ii
Dedicated to my Mom and Bob

iii
ACKNOWLEDGEMENTS
I would like to express my deepest and most heartfelt appreciation to my mentor
and dissertation chair Dr. Sheila H. Ridner. As her project coordinator I gained valuable
research experience and knowledge that helped to me to become an independent nurse
scientist. As her student she has been an amazing example of a teacher and scholar.
As my friend she has supported me through many significant life changes that have
taken place throughout my time as a PhD student and I will be forever grateful for all
that she has done for me. I would also like to thank the other members of my
dissertation committee for their time, effort, and assistance throughout the years: Drs.
Mary Dietrich, Leora Horn, Vaughn Sinclair, and Nancy Wells. Each member of my
committee has offered valuable insight and assistance in the development and
execution of my dissertation study and I have learned a great deal from each of them.
I would like to thank the American Cancer Society and the Vanderbilt School of
Nursing for providing financial support for this project. I would also like to thank the Lung
Cancer Alliance and the LUNGevity foundation for assistance in nationwide recruitment
of patients with lung cancer.
I would like to thank my family for their support throughout my many years of
school. My Mom always inspired me to dare to be different. Her diagnosis of and
subsequent death due to lung cancer was the inspiration for me to pursue my PhD in
nursing and to work with patients who have also been diagnosed with lung cancer. My
husband, Dr. Michael Johnson, has spent many hours proofreading my dissertation and
listening to my joy and pain throughout this process. My son, Arlo, has provided a
welcomed escape from the hours of hard work over the last two years. Finally, my
iv
grandfather, Bob, has been the only person in my life who has been here from my first
day of Kindergarten to the defense of my dissertation. As my dissertation on lung
cancer comes to a close he begins his own journey with the disease. I am forever
thankful for the love and endless support he has given me through the years.

v
TABLE OF CONTENTS
DEDICATION iii
ACKNOWLEDGEMENTS iv
LIST OF TABLES viii
LIST OF FIGURES x
Chapter
I. INTRODUCTION 1
a. Statement of Problem 2
b. Purpose of the Study 3
c. Research Questions 4
d. Significance of the Issue 4
i. Significance to Society 4
ii. Significance to Healthcare 14
iii. Significance to Science of Nursing 15

II. LITERATURE REVIEW 18

a. Theoretical Framework 18
b. Definition of Terms 21
c. Critical Analysis of Literature 24

III. METHODOLOGY 80

a. Research Design and Assumptions 80
b. Research Setting 80
c. Sample and Sampling Plan 81
i. Nature and Size of Sample 81
ii. Criteria for Sample Selection 81
iii. Participant Recruitment 82
iv. Human Subjects Protection 83
d. Data Collection Methods 84
i. Procedures 84
ii. Instruments 85
e. Data Analysis 88

vi
IV. FINDINGS 90

a. Sample Characteristics 90
b. Findings Related to Study Aims 96

V. DISCUSSION 104
a. Credibility, Rigor, and Validity of Design 104
b. Sample Characteristics 107
c. Aims 108
d. Study Strengths and Limitations 118
e. Implications 121
f. Recommendations for Future Research 123

Appendix 125
A. PATIENT CONTACT SCRIPT 125
B. SCREENING FORM 130
C. DEMOGRAPHIC AND BACKGROUND INFORMATION 131
D. STIGMA SCALE 133
E. SOCIAL CONSTRAINTS SCALE 134
F. M.D. ANDERSON SYMPTON INVENTORY-LUNG CANCER 136
G. NCCN DISTRESS THERMOMETER 138
H. HOSPITAL ANXIETY AND DEPRESSION SCALE 139
I. MEDICAL OUTCOMES SURVEY—SOCIAL SUPPORT SURVEY 142
J. QUALITY OF LIFE (LINEAR ANALOG SELF-ASSESSMENT) 144

REFERENCES 145

vii
LIST OF TABLES
Table
1. Key Concepts Related to the Phenomenon 21
2. Analysis of Methods Used to Study Stigma in Lung Cancer 25
3. Measures and Scales to Study Stigma in Lung Cancer 34
4. Analysis of Methods Used to Study Symptoms in Lung Cancer 37
5. Measures and Scales to Study Symptoms in Lung Cancer 48
6. Analysis of Methods Used to Study Psychological Symptoms in Lung Cancer 52
7. Measures and Scales to Study Psychological Symptoms in Lung Cancer 65
8. Analysis of Methods Used to Study Social Support in Lung Cancer 69
9. Measures and Scales to Study Social Support in Lung Cancer 73
10. Data Resources and Data Collection Methods 88
11. Demographics of Study Sample 91
12. Health Behavior Characteristics 92
13. Sample Score on Stigma Scale 94
14. Internal Consistency and Sample Scores on the Instruments 96
15. Correlations between External HRS and Physical Symptoms, Psychological
Symptoms and Social Support 98
16. Correlations between External HRS and Domains of QOL 99
17. Correlations between Internal HRS and Physical Symptoms, Psychological
Symptoms and Social Support 100
18. Correlations between Internal HRS and Social Support and QOL 100
19. Correlations between Physical Symptoms and Social Support and QOL 101
viii
20. Correlations between Depression and Social Support and QOL 102
21. Correlations between Anxiety and Social Support and QOL 102
22. Correlations between Distress and Social Support and QOL 103

ix
LIST OF FIGURES
Figure
1. The Theory of Unpleasant Symptoms 18

x