LIVING WITH UNCERTAINTY: THE PSYCHOLOGICAL ADJUSTMENT AND COPING BY ...

162 Pages·2007·2.89 MB·English

LIVING WITH UNCERTAINTY: THE PSYCHOLOGICAL ADJUSTMENT AND
COPING BY PARENTS OF CHILDREN WITH CANCER IN TAIWAN

by
Lin Lin

A dissertation submitted to the faculty of the University of North Carolina at Chapel Hill in
partial fulfillment of the requirement for the degree of Doctor of Philosophy in the School of
Nursing

Chapel Hill
2007

Approved by:

Advisor: Professor Merle Mishel

Reader: Professor Barbara Germino

Reader: Professor Karen Gil

Reader: Professor Margaret Miles

Reader: Research Assistant Professor
Mark Weaver
© 2007
Lin Lin
ALL RIGHTS RESERVED
ii
ABSTRACT
LIN LIN: Living with Uncertainty: the Psychological Adjustment and Coping by Parents of
Children with Cancer in Taiwan
(Under the direction of Merle Mishel)
The prognoses of childhood cancers have improved over the last few decades.
Nevertheless, parental uncertainty about the absolute cure and possible relapse pervades the
entire illness trajectory. The perception of uncertainty has been previously identified as a
significant factor correlating to psychological distress. The influence of coping processes on
psychological outcomes in parents of children with cancer has not been investigated
vigorously. The continual uncertainty may serve as a catalyst for positive psychological
changes and personal growth especially in the context of chronic illnesses. The purpose of
this study was to develop and examine a conceptual model depicting the psychological
adjustment and coping of Taiwanese parents by living with continual uncertainty about their
child’s cancer.
This study was a secondary data analysis of 205 mothers and 96 fathers of 226
children who had been diagnosed with cancer in Taiwan. A cross-sectional design was
utilized to examine the relationships among proposed variables. Some variables were
measured by culturally sensitive instruments developed in Taiwan.
The proposed alternative models fit adequately to the data via structural equation
modeling tests. Parental uncertainty was directly correlated to psychological distress whereas
parents’ perceived social support and coping did not mediate the relationship between
iii
parental uncertainty and psychological distress. However, parental uncertainty and parents’
perceived social support were associated with psychological growth mediated by parents’
coping such as interacting with families and maintaining an optimistic state of mind.
Based on the current research findings, reducing illness-related uncertainty may
decrease psychological distress directly and increase psychological growth indirectly though
more coping in Taiwanese parents of children with cancer. Furthermore, perceived social
support did not directly help parents to reduce psychological distress or increase
psychological growth. However, the availability of social support may improve the reduction
of psychological distress by lowering parental uncertainty and increase psychological growth
by lowering parental uncertainty and encouraging more coping.
The psychological adjustment of Taiwanese parents to childhood cancer has
effectively conceptualized by the adaptation of Mishel’s (1998, 1990) Uncertainty in Illness
Theory and Reconceptualization of Uncertainty in Illness Theory as shown in the present
study. The findings may provide possible guidelines for nurses in delivering a more
competent health care for Taiwanese parents of children with cancer.
iv
To the children and families who inspired me to broaden the view about life
v
ACKNOWLEDGEMENTS
I would like to express my appreciation to my mentor, Dr. Merle Mishel for her
professional guidance and personal support. It has been a great journey to work with her not
only as a doctoral student but also as a research assistant for her “Managing Uncertainty in
Cancer” studies. I thank my committee members, Drs. Barbara Germino, Karen Gil,
Margaret Miles, and Mark Weaver for their advice over these years. I also thank Dr.
Chao-Hsing Yeh and her research team in Taiwan who offered me a great opportunity to
work with them to complete this study.
I would like to express my appreciation to the faculties and staff at the University of
North Carolina-Chapel Hill School of Nursing. Thank you all for the instruction and
encouragement you have provided. I extend my gratitude to investigators and staff in Dr.
Mishel’s research team of Managing Uncertainty in Cancer studies. I would also like to
acknowledge Dr. Michael Belyea currently at Arizona State University who taught me
valuable knowledge in biostatistics.
I thank my family for their support and understanding of my long absence. I
appreciate my younger brother and Wen-Shiang, my lifelong friend, who have shared my
responsibility for taking care of my parents for years. My gratitude goes to friends in Chapel
Hill, other places in the United States, and Taiwan for being there at good and bad times.
Finally, my appreciation goes to colleagues in the University of Pennsylvania, the Children’s
Hospital of Philadelphia, the National Taiwan University and Hospital, and the Chang Gung
University and Children’s Hospital.
vi
TABLE OF CONTENTS
LIST OF TABLES................................................................................................................x
LIST OF FIGURES.............................................................................................................xii
Chapters
CHAPTER I: INTRODUCTION...........................................................................................1
Why Study Parental Uncertainty?..................................................................................3
Why Study Coping and Psychological Adjustment? ......................................................6
Statement of the Problem and Purpose of the Study.......................................................9
CHAPTER II: REVIEW OF THE LITERATURE...............................................................10
Overview of Childhood Cancer ...................................................................................10
Conceptual Framework ...............................................................................................14
Parental Uncertainty in Childhood Cancer...................................................................16
The Relationship Between Child’s Health Status and Parental Uncertainty.............16
The Relationship Between Parents’ Education Level and Parental Uncertainty.......18
The Relationship Between Parents’ Perceived Social Support
and Parental Uncertainty ........................................................................................19
The Influence of Parental Uncertainty on Psychological Growth .................................20
The Relationship Between Parental Uncertainty and Psychological Growth ...........20
The Relationship Between Parental Uncertainty and Psychological Growth
Mediated by Coping ...............................................................................................22
Uncertainty, Coping, and Psychological Growth in Taiwanese Culture...................23
vii
The Influence of Parental Uncertainty on Psychological Distress.................................26
The Relationship Between Parental Uncertainty and Psychological Distress...........26
The Relationship Between Uncertainty and Psychological Distress
Mediated by Coping ...............................................................................................29
The Influence of Parents’ Perceived Social Support.....................................................31
The Relationship Between Parent’s Perceived Social Support and Coping..............31
The Relationship Between Perceived Social Support
and Psychological Outcomes ..................................................................................32
Correlations Between Couples and Gender Differences ...............................................33
Hypotheses..................................................................................................................34
CHAPTER III: RESEARCH DESIGN AND METHODS ...................................................37
Participants .................................................................................................................37
Procedures and Human Subject Protection ..................................................................38
Variables and Measures...............................................................................................39
Parental Uncertainty...............................................................................................39
Perceived Social Support........................................................................................40
Coping Strategies ...................................................................................................41
Psychological Growth ............................................................................................43
Psychological Distress............................................................................................44
Child’s Health Status..............................................................................................45
Child’s Illness Parameters and Demographic Variables ..........................................46
Parental Characteristics ..........................................................................................47
Data Analyses .............................................................................................................47
Descriptive Statistics of the Measures.....................................................................47
viii
Sample Description ................................................................................................47
Structural Equation Modeling (SEM) and Model Selection.....................................48
Power Analysis ......................................................................................................50
CHAPTER IV: RESULTS ..................................................................................................52
Sample Characteristics ................................................................................................52
Measures and Psychometric Evaluation.......................................................................54
Structural Equation Modeling Tests.............................................................................59
Hypotheses Testing .....................................................................................................62
Summary of Findings..................................................................................................66
CHAPTER V: DISCUSSION..............................................................................................68
The Findings of Model Testing ...................................................................................68
Factors associated with Parental Uncertainty ..........................................................68
Parental Uncertainty, Coping, and Psychological Outcomes ...................................72
Perceived Social Support, Coping, and Psychological Outcomes ............................77
Conclusions.................................................................................................................79
Limitations of the Study ..............................................................................................80
Directions for Future Research ....................................................................................85
Implications for Patient/Family Education and Nursing Practice .................................86
VI. APPENDICES ............................................................................................................125
VII. REFERENCES ..........................................................................................................141

ix
LIST OF TABLES

Table 4.1 Demographic Characteristics of the 226 Couples of the 226 Children
Who Participated in the Original Study...........................................................88

Table 4.2 Demographic Characteristics of the 96 Fathers and 205 Mothers
Who Participated in the Present Study ............................................................89

Table 4.3 Demographic and Medical Characteristics of the Children with Cancer..........90

Table 4.4 Descriptive Statistics for the Measures ...........................................................91

Table 4.5 Descriptive Statistics for the Variables ...........................................................92

Table 4.6 Comparisons for the Means of the Measures
Between Mothers and Fathers.........................................................................93

Table 4.7 Comparisons for the Means of the Measures for Parents of Children in
Different Stages of Cancer Treatment.............................................................94

Table 4.8 Correlation Table for Study Variables ............................................................96

Table 4.9 Parental Perception of Uncertainty Scale (PPUS) ...........................................97

Table 4.10 Perceived Social Support Scale ....................................................................100

Table 4.11 Coping Scale................................................................................................101

Table 4.12 Growth Through Uncertainty Scale (GTUS) ................................................103

Table 4.13 Symptom Checklist-35-Revised (SCL-35-R)................................................107

Table 4.14 Impact of Event (IES)-Intrusion Subscale.....................................................109

Table 4.15 Functional Status II-Revised (FSII-R) ..........................................................110

Table 4.16 Model Comparison for Alternative Reduced Models to the Full Model ........111

Table 4.17 Model Fit Statistics for Comparing Nested Structural Equation Models
to the Full Model..........................................................................................112

Table 4.18 Model Result for the Theoretical Relationships in the
Final Reduced Model ...................................................................................113

x