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Navigating Survival: Quality of Life Following
Bone Marrow Transplantation
6. AUTHOR(S)
Paula A. Peters, Captain
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AFIT Student Attending: University of Arizona AFIT/CI/CIA- 9 1 -0 1 8
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Wright-Patterson AFB OH 45433-6583
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DTIC
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AUG 0 9 1991
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NSN 7540-01-280-5500 Standad 29 (Rev 2-89)
1
NAVIGATING SURVIVAL: QUALITY OF LIFE
FOLLOWING BONE MARROW TRANSPLANTATION
by
Paula Ann Peters
Copyright Paula Ann Peters 1991
A Thesis Submitted to the Faculty of the
COLLEGE OF NURSING
In Partial Fulfillment of the Requirements
For the Degree of
MASTER OF SCIENCE
In the Graduate College ,T.S
THE UNIVERSITY OF ARIZONA DY 1.'3
Jdti I ica ,, ,
6y
Ost biio,, t
1 9 9 1
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2
STATEMENT BY AUTHOR
This thesis has been submitted in partial fulfillment
of requirements for an advanced degree at The University of
Arizona and is deposited in the University Library to be
made available to borrowers under rules of the Library.
Brief quotations from this thesis are allowable without
special permission, provided that accurate acknowledgment of
source is made. Requests for permission for extended
quotation from or reproduction of this manuscript in whole
or part may be granted by the copyright holder.
2
SIGNED: a 1-id
APPROVAL BY THESIS DIRECTOR
This thesis has been approved on the date shown below:
Alice J. Longton jDate "
Professor of Nursing
3
ACKNOWLEDGEMENTS
The completion of this thesis would not have been
possible without the generous contributions of many people.
To Alice Longman, thesis chairperson, who suggested the idea
of quality of life as a focus for this study, and her
continual support and enthusiasm was appreciated. To Carrie
Jo Braden and Ida M. (Ki) Moore, thesis committee members,
for their input in both content and methodology and their
astute insight into the cancer experience. To Rannie Fox
for her accurate and timely transcriptions.
To the Arizona Cancer Center, Drs. William Dalton and
Catherine Azar for their interest and access to patients. A
special thank you to Katharine Chavez, my mentor and friend,
who introduced me to bone marrow transplantation and
assisted me in several steps along the way.
To my family who continue to support any endeavor I
undertake, but especially to my father, a cancer survivor,
who inspired me to pursue this area of nursing, and to my
brother Bob, who taught me that computers are our friends.
Gratitude is extended to the American Cancer Society
for funding received to purchase research materials.
To the men and women who so generously discussed their
experiences with bone marrow transplantation and cancer
survivorship, this thesis is dedicated to you.
TABLE OF CONTENTS
LIST OF ILLUSTRATIONS....................................... 6
LIST OF TABLES.............................................. 7
ABSTRACT.................................................... 8
CHAPTER 1: INTRODUCTION................................... 9
Statement of the Problem............................. 10
Purpose................................................ 11
Significance.......................................... 11
Summary................................................ 13
CHAPTER II: REVIEW OF THE LITERATURE..................... 15
Bone Marrow Transplantation.......................... 15
Pretransplant Conditioning...................... 17
Early Complications............................. 19
Late Complications.............................. 23
Psychosocial Problems........................... 25
Quality of Life....................................... 28
Quality of Life Instruments..................... 31
Quality of Life Studies......................... 33
General Patient Populations................ 33
Oncology Patient Populations............... 36
BMT Patient Populations.................... 39
Long-term Survival.................................... 42
Late Effects..................................... 44
Summary............................................... 47
CHAPTER III: METHODOLOGY.................................. 48
Design................................................. 49
Setting and Sample.................................... 51
Protection of Human Subjects......................... 51
Data Collection......................... ............. 52
Data Analysis.............................53
Trustworthiness of the Data.......................... 54
Summary............................................... 56
5
CHAPTER IV: ANALYSIS OF DATA AND
PRESENTATION OF FINDINGS .................. 57
Description of the Sample ......................... 57
Coding, Analysis, and Categorization ............... 58
Recoding .......................................... 68
Navigating Survival as a Process .................. 74
Major Concepts of Navigating Survival .............. 74
Deciding for Life ............................ 75
Waiting for Signs of Success ................... 81
Reconstructing Normalcy ..................... 92
Summary ........................................... 99
CHAPTER V: CONCLUSIONS ................................ 100
Discussion of the Findings ........................ 100
Comparison of Findings with other
Literature Sources ........................... 103
Limitations of the Study .......................... 106
Recommendations for Further Research ............. 106
Implications for Nursing Practice .................. 107
Summary ........................................... 109
APPENDIX A: HUMAN SUBJECTS APPROVAL .................. i
APPENDIX B: ACCESS TO SUBJECTS LETTER .................. 113
APPENDIX C: SUBJECT DISCLAIMER ........................ 115
APPENDIX D: DEMOGRAPHIC DATA FORM ..................... 117
APPENDIX E: SELECTED CATEGORIES AND DATA BITS ......... 119
REFERENCES ............................................. 147
6
LIST OF ILLUSTRATIONS
FIGURE 1: Relationship among the concepts of
Navigating Survival ..................... 73
7
LIST OF TABLES
IABLE 1: Summary of Demographic Data ................. 58
TABLE 2: Preconditioning Protocols Used Prior
to Treatment . ................................ 59
TABLE 3: Initial Categories After Analysis of
First Interview .............................. 60
TABLE 4: Final Categories Resulting From
Data Analysis . ............................... 69
TABLE 5: Concepts and Processes for Stage One of
Navigating Survival ......................... 70
TABLE 6: Concepts and Processes for Stage Two of
Navigating Survival ......................... 71
TABLE 7: Concepts and Processes for Stage Three of
Navigating Survival ......................... 72
8
ABSTRACT
This study explored the quality of life of adult Bone
Marrow Transplantation (BMT) survivors and processes
involved in maintaining or enhancing life quality were
identified. Grounded theory methodology was used to explore
quality of life from the survivor's perspective. Five
adults, 87 to 578 days post BMT, were selected using
theoretical sampling and interviewed.
A theory of Navigating Survival emerged from data
analysis as a series of coping processes employed by BMT
survivors to manage quality of life disruptions. BMT
survivors identified disruptions in quality of life during
the rapid decision-making period; after discharge when
limitations on physical activity must be managed; and as
activities resume but fears of recurrence became stronger.
Coping mechanisms used varied but were directed toward three
areas: adapting to transplant, searching for meaning, and
discovering a difference. Identifying unique quality of
life aspects will enable oncology nurses to design
interventions to enhance life quality of BMT survivors..
9
CHAPTER ONE
INTRODUCTION
Bone Marrow Transplantation (BMT) has evolved from an
experimental treatment into a therapeutic modality for many
hematologic, immunologic, and neoplastic disorders.
Transplantation in many instances offers the only hope for
cure. Over 4,000 patients per year receive bone marrow
transplants at more than 250 centers worldwide including
every continent except Antarctica (Bortin & Rimm, 1989).
The advancement of BMT and the larger numbers of people
receiving this treatment have led to a significant number of
long-term disease free survivors. Rates of survival vary
according to diagnosis, age, stage of remission, and type of
transplant done, but on the average bone marrow
transplantation offers a 50% survival rate (Freedman, 1988).
Long-term survival following bone marrow
transplantation has been described as the absence of
disease, and only recently has the quality of that life been
'ddressed. The first 100 days represent short term or acute
survival, as the recipient of a transplant confronts the
side effects of the conditioning treatment such as
neutropenia, acute graft-versus-host disease (GVHD), or
