WOMEN’S EMOTIONAL EXPERIENCES WITH GYNECOLOGICAL ONCOLOGY pot

WOMEN’S EMOTIONAL EXPERIENCES WITH

GYNECOLOGICAL ONCOLOGY

by

CHRISTINE ANN CAMPERSON

Presented to the Faculty of the Graduate School of

The University of Texas at Arlington in Partial Fulfillment

of the Requirements

for the Degree of

DOCTOR OF PHILOSOPHY

THE UNIVERSITY OF TEXAS AT ARLINGTON

May 2009

Copyright © by Christine Ann Camperson 2009

All Rights Reserved

Dedication

This dissertation is dedicated to my mother and father.

In Memory

This dissertation is in memory of my favorite gynecological patient, who died of

complications of ovarian cancer in 2002, whom I’ll refer to as “The Teacher.” I wish

she were alive today to read this work.

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ACKOWLEDGEMENTS

I would like to thank my wonderful parents and family for all of their love,

encouragement, support and advice. They essentially took this doctoral journey with

me through all of these years. Without my mother and father, I never would have been

able to finish my doctorate.

I would like to express my gratitude to Dr. Maria Scannapieco, my department

Chair, whose guidance, advice and organizational skills were most imperative in my

dissertation journey. I would like to thank my entire Ph.D. committee for their support

and instrumental feedback: Dr. Norman Cobb, Dr. Rebecca Hegar, Dr. Diane Snow and

Dr. Muriel Yu. Special thanks also to Dr. Cobb for his wonderful encouragement.

I would like to thank the 10 remarkable women who volunteered their time and

shared their insights and experiences with me by allowing me to interview them for this

study. I cannot find the words to appropriately express the admiration and gratitude that

I have for them.

Special kudos goes to my little dog, T.C. who was literally at my side and who

kept me company through all of the long hours spent on gathering the material and

writing this dissertation.

March 26, 2009

vi

ABSTRACT

WOMEN’S EMOTIONAL EXPERIENCES WITH

GYNECOLOGICAL ONCOLOGY

Christine Ann Camperson, Ph.D.

The University of Texas at Arlington, 2009

Supervising Professor: Maria Scannapieco

This study describes women’s emotional experiences with gynecological

oncology, with an emphasis on depression, using a qualitative phenomenology

approach. The qualitative methodology was designed to give the women participants a

voice.

Ten women who resided in North Texas participated in the study. Each of the

women had been diagnosed with a gynecological oncology at some point in their lives.

Seven of the women had an ovarian cancer diagnosis, one had cervical cancer, one had

endometrial cancer, and one had a diagnosis of vaginal and cervical cancer. The

participants ranged in age from 28 to 67 years of age.

vii

The results of the data analysis revealed 11 themes for this group of women:

Wide Range of Emotions at Diagnosis, Advocacy, Support Groups, Personal Growth,

Spirituality, Longevity, Complex Support Systems, Chemotherapy Side Effects, Bonded

with Doctors, Medications, and Counseling. The Support Group theme holds the key to

many of these coping mechanisms as it appears to be a pathway to other themes. The

women in the support groups appear to be key informants in developing information

and ways to cope with gynecological cancers.

All of the participants endorsed three or more symptoms of depression after

receiving their gynecological cancer diagnosis. The most commonly endorsed

depression symptoms also happen to be side effects of chemotherapy and all the

participants received chemotherapy. Of all of the participants, one, who was a minority,

was significantly different from the other women in the study and reported significant

distress and depression, which was alleviated by her support group involvement.

In this study, as I set out to study emotional experiences, I found resiliency was

the key trait shared by the women. Resiliency is the consistent “positive adaptation in

the face of significant adversity or risk” (Masten & Reed, 2002, p .75). The following

quote from one of the participants captured the spirit of the women in this study, “You

know, as soon as I knew what I had, it’s time to fight it. Tell me how to fight it, and I

will do everything in my power to fight it.”

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TABLE OF CONTENTS

ACKNOWLEDGEMENTS………………………………………….………….... v

ABSTRACT………………………………………… ………………..……….…. vi

LIST OF TABLES………………………………………………..………………. xiii

Chapter

1. INTRODUCTION………………………………………………………… 1

1.1 Cancer Statistics……………………………………………….. 2

1.2 Description of Cancer……………………………………………4

1.3 Description of Depression………………………………………..7

1.4 Statement of the Problem………………………………………..10

1.5 Importance to Social Work…………………………………….. 10

1.6 Purpose of the Study…………………………………………….12

2. LITERATURE REVIEW…………………………………………………...13

2.1 Methods for Empirical Review………………………………….13

2.2 Methodological Concerns………………………………………..14

2.3 Description of Studies…………………………………………...15

2.4 Sample Collection Methods……………………………………. 17

2.5 Sample Sizes……………………………………………………..20

2.6 Statistical Analysis……………………………………………….21

ix

2.7 Theory/ Framework………………………………………..…….22

2.8 Demographics………………………………………………..…..22

2.8.1 Age………………………………………………….....22

2.8.2 Race……………………………………………………23

2.8.3 Marital Status………………………………………….23

2.8.4 Education………………………………………………24

2.9 Empirical Findings……………………………………………….24

2.10 Summary of Risk Factors……………………………………….33

2.11 Limitations of Current Analysis…………………………………35

2.12 Conclusions……………………………………………………...37

3. THEORTICAL FRAMEWORK………………………………………….….38

3.1 Biopsychosocial Paradigm of Depression………………………...38

3.1.1 Biological Theories……………………………………...39

3.1.2 Psychological Theories………………………………….40

3.1.3 Social and Environmental Theories……………………...42

4. METHODS……………………………………………………………………47

4.1 Rational for Qualitative Design…………………………………....47

4.2 Instruments………………………………………………………...49

4.3 Participants………………………………………………………...50

4.4 Sample Methods…………………………………………………...52

4.5 Informed Consent …………………………………………………53

4.6 Data Collection Process……………………………………………53

x

4.7 Data Analysis……………………………………………………..54

4.8 Validity……………………………………………….…………..55

4.9 Limitations of Current Study………………………….……….…57

4.10 Summary ………………………………………………………..57

5. RESULTS…………………………………………………………………….59

5.1 Participants………………………………………………………..59

5.2 Gynecological Oncology Diagnosis…………………………........60

5.3 Mental Health History …………………………………………....63

5.4 Interview Questions…………………………………………….…64

5.4.1 Gynecological Oncology Information…………………..64

5.4.2 Troubling Issues / Sense of Loss……………………….66

5.4.3 What Can Be Done Better……………………………...67

5.4.4 Cancer Resources / Information………………………..68

5.5 Themes……………………………………………………………68

5.5.1 Wide Range of Emotions at Diagnosis…………………69

5.5.2 Advocacy……………………………………………….72

5.5.3 Spirituality……………………………………………....75

5.5.4 Complex Support Systems……………………………...79

5.5.5 Support Groups……………………………………….…81

5.5.6 Chemotherapy Side Effects……………………..…..…..84

5.5.7 Longevity……………………………………………..…88

5.5.8 Personal Growth………………………………………....93

xi

5.5.9 Bonded with Doctors…………………………………..96

5.5.10 Medications……………………………………………99

5.5.11 Counseling……………………………………………102

5.6 Depression…………………………………………………………....104

5.7 Depression symptoms……………………………………………….. 106

6. DISCUSSION………………………………………………………………. 107

6.1 Participants………………………………………………………..107

6.2 Themes…………………………………………………………....109

6.3 Depression………………………………………………………...116

6.4 Depression and the DSM-IV-TR…………………………………117

6.5 Resiliency………………………………………………………...121

6.6 Practice Implications……………………………………………...123

6.7 Policy Implications……………………………………………..…125

6.8 Research Implications…………………………………………….126

6.9 Conclusion………………………………………………………...128

Appendix

A. EMPIRICAL LITERATURE REVIEW CHART………………………..129

B. DEMOGRAPHICS & GYNECOLOGICAL ONCOLOGY TABLE

(TABLE 5.3) …………………………………………………………..….148

C. DEMOGRAPHICS QUESTIONNAIRE……………………………..…..150

D. GYNECOLOGICAL ONCOLOGY QUESTIONNAIRE………………..153

E. MENTAL HEALTH HISTORY QUESTIONNAIRE…………………....156

xii

F. SEMI-STRUCTURED INTERVIEW QUESTIONS…………………….158

REFERENCES………………………………………………………………………. 161

BIOGRAPHICAL INFORMATION………………………………………………....173

xiii

LIST OF TABLES

Table Page

5.3 Demographic and Gynecological Oncology Table………………148

1

CHAPTER 1

INTRODUCTION

Gynecological cancers are very prevalent in our society. Even so, the academic

and medical communities continue to under-address this population with a lack of

research. Only gynecological and breast cancers pertain mainly to women (few men

have been diagnosed with breast cancer). With the advent and popularity of the Susan

G. Komen Breast Cancer Foundation, not only was the stigma of having breast cancer

lifted, but money for funding poured in and, with the emphasis on breast cancer needs,

research flourished. However, while there has been substantial research addressing

breast cancer, gynecological cancers have not been studied extensively. With

gynecological cancer, there is still a social stigma and a lack of support from the general

population, creating a lack of funding for research. In particular, there is a gap in the

literature concerning gynecological cancers and women’s emotional experiences and

depression.

My interest in the gynecological oncology population evolved because I was a

gynecological oncology social worker for many years at a large hospital. I was curious

why some women had more or less distress and/or depression than other women. Some

women I followed for many years. I watched them go through surgeries, chemotherapy,

radiation treatments, bowel obstructions, and a wide variety of other medical

complications. I visited with them after the doctor had given them their cancer

2

diagnosis, and I wondered if somehow we could do it better. I saw a wide variety of

reactions from anger to shock to confusion to acceptance. One of my favorite memories

was working with a gravely ill gynecological oncology patient. I asked her what her

favorite activity was, besides being with her family. She replied playing cards. So I got

a deck of cards, and we played “Go Fish” for a while. Her daughter came in and

greeted us. The phone rang and the daughter answered the phone. She said “No. My

mom can’t come to the phone right now. She is busy playing cards with her social

worker”. Days later she died. I had the rare opportunity to follow these patients for

years and had the privilege to share their joys and sorrows. These experiences helped

me select the topic of this paper.

Because of the emotional nature of receiving a cancer diagnosis and having to

deal with a life-altering medical diagnosis that turns a person’s life upside down with

surgeries, multiple chemotherapies, and internal radiation treatments, the studying of

women with a gynecological oncology diagnosis is a worthwhile topic.

1.1 Cancer Statistics

When looking at the cancer statistics in America, the number of newly

diagnosed individuals is staggering. In 2007, an estimated 1,444,920 people received a

cancer diagnosis (The American Cancer Society 2008c). Of that group, 678,060 were

women. Estimates say 559,650 cancer deaths occurred and of that number 270,100

were women.

The American Cancer Society (2008b) lists the probability of a woman

developing cancer over the course of her lifetime (the probability statistics exclude