STRESS, COPING, SOCIAL SUPPORT AND ADJUSTMENT AMONG
FAMILIES OF CHD CHILDREN IN PICU AFTER HEART SURGERY
BY
HALA SAIED
ADVISOR
DR. CAROL MARIE MUSIL
Submitted in partial fulfillment of the requirements
For the degree of Doctor of Philosophy
Frances Payne Bolton School of Nursing
CASE WESTERN RESERVE UNIVERSITY
August, 2006
CASE WESTERN RESERVE UNIVERSITY
SCHOOL OF GRADUATE STUDIES
We hereby approve the dissertation of
Hala Saied
______________________________________________________
candidate for the Ph.D. degree *.
Dr. Carol M. Musil
(signed)_______________________________________________
(chair of the committee)
Dr. Donna Dowling
________________________________________________
Dr. Gail McCain
________________________________________________
Dr. Hani Hennein
________________________________________________
________________________________________________
________________________________________________
07/06/2006
(date) _______________________
*We also certify that written approval has been obtained for any
proprietary material contained therein.
Copyright © (2006) by Hala Saied
All rights reserved
TABLE OF CONTENTS
TABLE OF CONTENTS………………………………………………………………….v
LIST OF TABLES…………………………………………………………………...…viii
LIST OF FIGURES………………………………………………………………………xi
ACKNOWLEDGEMENTS……………………………………………………………...xii
ABSTRACT ……………………………………………………………………………xiii
Chapter Ι: Introduction
Significance of the Problem……………………………………….………………4
Nursing as a Discipline and Meta-paradigm………………………………………8
Purpose of the study ……………………………………………………………..10
Research Questions...…….……………………………………………………....11
Theoretical Model ……………………………………………………………….11
Application of the Resiliency Model to this Study………………………………15
Assumptions……………………………………………………………………...20
Definitions of Terms …………………………………………………………….20
CHAPTER ΙΙ: Literature Review………………………………………………………. 23
Congenital Heart Disease ………………………………………………………..23
Scope of the Problem…………………………………………………….24
Conceptualization of Stress ……………………………………………………...26
Family stress and CHD…………………………………………………..27
Family stress and PICU………………………………………………….32
v
Conceptualization of Coping ……………………………………………………36
Coping and CHD…………………………………………………………38
Family coping and the PICU……………………………………………..40
Conceptualization of social support ...……………………………………….…..43
Social Support and CHD…………………………………………………45
Social Support and PICU………………………………………………...47
Conceptualization of Adjustment ………………………………………….……49
Family Adjustment and CHD……………………………………………50
Family Adjustment and the PICU………………………………………..54
Linkage Between Study Variables……………………………………………….58
Conclusion…………………………………………...…………………………..66
CHAPTER III: Methods ……………………………………………………………......67
Introduction ……………………………………………………………………..67
The Study Design ……………………………………………………………….67
Setting and Sample ……………………………………………………………...68
Procedure for Data Collection …………………………………………………..72
Instrumentation ………………………………………………………………….73
Data Management ……………………………………………………………….81
Data Analysis ……………………………………………………………………83
Research Questions Testing……………………………………………………...84
Protection of Human Subjects…………………………………………………...87
vi
CHAPTER ΙV: Results…………………………………………………………………. 89
Parents’ demographic characteristics ……………………………………………89
Children demographic characteristics ………………………………...................93
Preliminary data analysis ………………………………………………………..94
Analysis of Research Questions …………………………………………………97
CHAPTER V: Discussion ………………………………………...................................125
Stress …………………………………………………………….......................126
Coping ………………………………………………………………………….131
Social support …………………………………………………………………..133
Adjustment ……………………………………………………………………..135
Findings of the Study and the Resiliency Model ………………………….. ….137
Limitations ……………………………………………………………………..138
Implications of the Study for Practice.…………………………………………138
Theory Development …………………………………………………………..140
Implications of the Study for Future Research ………………………………...140
Conclusion……………………………………………………………………...142
Summary………………………………………………………………………..143
APPENDICES………………………………………………………………………….145
REFERENCES…………………………………………………………………………
vii
LIST OF TABLES
Table
1
Parent’s Demographic Characteristics ……………………………………...90
2
Children Demographic Characteristics……………………………………...93
3
Summary of participants scores on major study variables…………………..96
4
Correlations between Family and Child Demographic Variables
(Parent’s Age, Child’s Age, Parent’s Gender, Family Stress,
Social Support, Coping and Adjustment)…………………………………..98
5
Correlation matrix of major study variables………………………………...99
6
Effects of Stress, Coping, Social Support on (FAD General Family
Functioning)………………………………………………………………..100
7
Effects of Stress, Coping, Social Support on Adjustment (FAD
Communication)………………………………………………………..…100
8
Summary of Hierarchical Regression of FAD General on
Intra-family Strain, Stressful Family life Events, PICU Parental stress,
Coping, and Social Support Controlling for Parent’s and Child’s
Demographics (Parent’s Age, Gender, and Child’s Age)………………….103
9
Summary of Hierarchical Regression of FAD General on Family stress,
Coping, and Social Support Controlling for Parent’s and Child’s
Demographics (Parent’s Age and Gender, and Child’s Age, Marital Status,
Child Gender, Prior Surgery)……………………………………………….105
viii
10
Summary of Hierarchical Regression of FAD Communication
on Intra-family Strain, Stressful Family Life Events, PICU
Environmental Stress, Coping, and Social support when Controlling
for Parent’s and Child’s Demographics (Parent’s Age, Gender,
and Child’s Age)……………………………………………………………107
11
Summary of Hierarchical regression of FAD communication on
intra-family strain, stressful life family events, PICU parental stress,
coping, and social support when controlling for parent’s and child’s
demographics (parent’s age and gender, and child’s age, marital status,
child’s gender, and prior surgery)…………………………………………109
11
Summary of Hierarchical Regression of Adjustment (FAD General
Family Functioning) on Intra-family Strain and Social Support with
Intra-family Strain x Support………………………………………………112
13
Summary of Hierarchical Regression of Adjustment (FAD general
family functioning) on Stressful Family Life Events and Social
Support with Stressful Family Life Events x Support…………………….113
14
Summary of hierarchical regression of adjustment (FAD general) on
parental stress in the PICU and social support with PICU environmental
stress x support………………………………………………………….…114
15
Summary of Hierarchical Regression of Adjustment (FAD
Communication) on Stressful Family Life Events and Social Support
with Stressful Family Life Events x Support………………………………115
ix
16
Summary of Hierarchical Regression of Adjustment (FAD Communication)
on Intra-family Strain and Social Support with Intra-family Strain x Social
support………………………………………………………………………116
17
Summary of Hierarchical Regression of Adjustment (FAD Communication)
on PICU Environmental Stress and Social Support with PICU Environmental
Stress x Support…………………………………………………………….117
18
Effects of the Independent Variables on the Mediator Variable
(Social Support)……………………………………………………………118
19
Effects of Intra-family Strain on Adjustment (FAD General Family
Functioning)………………………………………………………………..119
20
Effects of intra-family strain on adjustment (FAD communication)
21
Most Stressful Items Identified by Mothers and Fathers on the Parental
Stressor Scale: PICU (N=74)……………………………………….…..…120
22
Mean Scores for PSS/PICU for Mothers (n = 66) and
Fathers (n = 8)………………………………………………………..……122
x
LIST OF FIGURES
Figure
1. A conceptual model showing the relationship among independent,
dependent, and control variables among families of children in the
PICU after heart surgery ……………………………………………………………...18
2. Substruction of the Study……………………………………………………………...19
3. Moderator effect of social support between intra-family strain and
FAD general functioning ……………………………………………………………123
4. Moderator effect of social support between stressful life events strain
and FAD general functioning……………………………………………………….124
xi
Acknowledgement
I would like to thank numerous people whose assistance and encouragement have
provided the support for the completion of this dissertation. Without their nurturance and
support along the winding path, getting to this point would not have been possible.
I wish to acknowledge with sincere appreciation the members of my committee.
Dr. Carol Musil, my research advisor and chairperson, shared her invaluable expertise,
patience, guidance and support throughout this study project. The committee members:
Dr. Donna Dowling, Dr. Gail McCain, and Dr. Hani Hennein guided, supported and
challenged me to expand my capacity as a scholar.
Special appreciation goes to a nurse coordinator at the Cleveland Clinic
Foundation, Donna Londrico, for her great assistance and support through the data
collection period. I appreciate her consideration and kindness.
My sincere acknowledgment goes to Dr. Stephen Davis at the Cleveland Clinic
Foundation for his guidance and input during the development of the dissertation
proposal.
My special thanks are to Diane Gorbey, a program manager of the Pediatric
Cardiothoracic Surgery Department at the University Hospitals of Cleveland Without her
assistance over the last two years, this dissertation would not have been possible.
My sincere appreciation goes to my family for their love, patience, understanding
and invaluable support. My husband, my mother, and my father were always beside me
and all the time believed in my ability to succeed. My precious children, Ahmed, Hazem,
Dana, and Mohamed also suffered through the trials and tribulations of this project with
me. Many thanks to them for being such awesome people.
xii
Stress, Coping, Social Support and Adjustment among Families
Of CHD Children in PICU after Heart Surgery
Abstract
By
Hala A. Saied
The admission of a child with congenital heart disease to the PICU after heart
surgery is a uniquely stressful situation for both children and their parents and may
impact how parents adjust to this situation. The purpose of this study was to explore the
relationship between family and child demographic characteristics, stress, coping, social
support and adjustment in families who have a child in the PICU after heart surgery. The
study design was a non-experimental, descriptive correlational design. McCubbin and
McCubbin’s Resiliency Model of Family Stress, Adjustment and Adaptation provided an
organizing framework for the study. A convenience sample of 74 families (8 fathers, 66
mothers) participated in this study. Data were collected using a self-administrated
questionnaire in two PICU hospitals in Cleveland, Ohio. Data were analyzed using
descriptive statistics, Pearson r product-moment correlation, and simultaneous and
hierarchical regression.
Instruments used included a modified version of the Family Inventory of Life
Events (FILE), the Parental Stressor Scale: PICU, Coping Health Inventory for Parents
(CHIP), Inventory of Socially Supportive Behaviors (ISSB), and McMaster’s Family
Assessment Device: FAD General Family Functioning and FAD Communication
subscales.
xiii
Stress due to the accumulation of intra-family strain and stressful family life
events was significantly correlated with FAD general family functioning and FAD
communication. Both fathers and mothers reported that the overall PICU experience was
stressful for them and rated the parental role and the child’s behaviors and emotions as
the most stressful dimension of their PICU experience. The participants in this study used
the three coping patterns of CHIP in different degrees to cope with their situation. Coping
pattern Ι was used more often as compared to the other two patterns.
Based on regression analysis, only pattern I coping made the most significant
contribution to predicting general family functioning. Controlling for the parent’s age,
gender, marital status, prior surgery and the child’s age increased the explained variance
to 46% on the FAD general functioning and to 33% on the FAD communication. Social
support did not predict family adjustment in this study, but it worked as a moderator
variable between intra-family strain, stressful family life events and FAD general family
functioning. More family-based research is needed to study stress, coping, social support
and adjustment in families faced with other chronic illnesses of childhood as well as
CHD.
xiv
1
CHAPTER Ι
Introduction
Children are the jewels in their parents’ lives. When parents are informed that
their child has congenital heart disease (CHD) even before the child is born, the joy of
giving birth is often coupled with fear, guilt, sadness, shame, and blame because of the
loss of the desired healthy child they had dreamed of (Cohn, 1996; Purcell, 1996). Many
parents react to the initial diagnosis of their child’s CHD with a lack of acceptance or by
denying that there is a problem (Canam, 1993; Lubinsky, 1994; Rosenthal, Biesecker &
Biescker, 2001). Parents may also experience intense anger at the unfairness of the
situation, or they may feel socially isolated and stigmatized (Rosenthal et al., 2001).
Congenital heart disease (CHD) is a major health problem facing families in the
United States today. It is estimated that in at least eight of every 1,000 live births, or
about 25,000 to 35,000 babies are born with CHD each year in the United States of
America (USA); that’s almost one percent of all live-born infants, and it accounts for
approximately 30% of all congenital abnormalities (American Heart Association, 2006).
The economic burden of caring for children with CHD is significant (Bristow, 1995). The
direct medical expenses associated with this problem account for more than $87 billion
dollars annually.
Management of CHD is primarily surgical. Pediatric cardiac surgery began in
1939 with the ligation of a patent ductus arteriosus (Green, 2004; Waldhausen, 1997).
The extraordinary advances in the field of pediatric cardiovascular surgery, improved
diagnostic capabilities, and intensive care management over the past three decades have
been successful in reducing mortality and providing infants and children with complete
2
repairs at earlier ages (Boneva, Botto, Moore & Yang et al, 2001; Soetenga & Mussatto,
2004). Cardiovascular surgery is performed through either a closed-heart or an open-heart
approach. Open procedures employ the use of a heart/lung machine. The heart/lung
machine is used to supply oxygen to the blood and pumps the blood through the body,
bypassing the lungs and heart (American Heart Association, 2006).
With the advancement of medical science and specialized surgical procedures,
most children with congenital heart disease will experience one or more hospitalizations
for surgical treatment or correction of their heart defects. Almost all of these children are
admitted postoperatively to a pediatric intensive care unit (PICU) because they require
immediate stabilization and life support, which is invasive, and which affects the
appearance of the child (Lewandowski, 1980; Saenz, Beebe & Triplett, 1999). Complex
monitoring systems, life support machines, and computerized infusion devices are used,
and these machines emit strange lights and sounds, and they produce heat and can also
make older children feel as if they are unable to move (Noyes, 1998, Synder, 2001,
2004). Moreover, the environment is usually bright and filled with unfamiliar people
who are using language that is unfamiliar to the child, and who examine the child and
perform uncomfortable and sometimes painful procedures (Synder, 2004). Parents are
also worried about the child’s future and the responsibility of managing the child’s
complex needs (Rosenthal, et al., 2001; Youngblut, Brooten & Kuluz, 2005). These
factors often combine to create even greater stress for the parents because their child
appears even more vulnerable, and parents feel helpless to change the situation or speed
up their child’s recovery.
3
Nevertheless, this highly technical specialized surgery and postoperative care
significantly reduce mortality and morbidity rates, and, in most cases, heart surgery in
children has become a relatively routine procedure (Boneva, et al., 2001; Purcell, 1996;
Soetenga & Mussatto, 2004). For parents, however, surgery on an organ as vital to life as
the heart is never routine (Lewandowski, 1980; Utens, Bieman, & Verhulst et al., 2000).
The prospect of cardiac surgery and admission to a PICU can be a uniquely stressful
situation for both children and their parents (Bousso & Angelo, 2003; Purcell, 1996;
Utens et al., 2000). Poor maternal adjustment, high levels of distress manifested as
anxiety, sleeplessness, and social dysfunction of mothers of CHD children waiting for
cardiac surgery have been reported by Utens et al. (2000) and Wray and Sensky (2004)
prior to the scheduled surgery. In addition to their concerns over subjecting their child to
a potentially life-threatening operation and thinking about possible complications, many
parents also experience guilt, wondering if they are somehow responsible for their child’s
heart defect (Purcell, 1996).
When a child undergoes heart surgery, some parents are able to cope effectively,
keeping their family together and dealing with these stressful times successfully.
However, the stress associated with a child’s cardiac defect and surgery can devastate
some families, as the pile-up stressors outstrip the family’s resources (McCubbin &
Patterson, 1983). This special population and their families have different medical,
developmental, social, emotional, and environmental needs and issues that require long
term health care (Grey & Sullivan-Bolyai, 1999).
4
Significance of the Problem
Investigators have examined the stress experienced by parents of children
hospitalized in the PICU by focusing on the needs of those parents (Farrell & Frost, 1992;
Fisher, 1994; Kasper & Nyamathi, 1988; Kirschbaum, 1990; Wray & Maynard, 2006),
the actual stressors that parents experience (Berenbaum & Hatcher, 1991; Curley, 1988;
Eberly, Miles, Carter, et al., 1985; Haines, Perger, & Nagy, 1995; Goldberg, Morris,
Simmons, et al., 1990; LaMontagane & Pawlak, 1990; Lewandowski, 1980; Miles,
Carter, Eberly, et al., 1989; Miles & Carter, 1982, 1983, 1985), the parents’ reactions and
concerns (Youngblut, Brooten & Kuluz, 2005), and also by focusing on parental role
alteration (Board, 2004; McCubbin, et al.,1989; Johnson et al.,1995). Numerous studies
and conceptual frameworks have been identified in the literature that describe the
possible causes and contributing factors of parental stress when a child is admitted to the
PICU; however, research addressing the impact of the PICU on parents of CHD children
after heart surgery is very limited. With the exception of three studies (Goldberg,
Simmons, Newman, et al., 1991; Lewandowski, 1980; Miles, et al., 1989) the stress
experiences of parents caring specifically for children with CHD after cardiac surgery has
been ignored. Lewandowski (1980) was one of the earliest researchers who studied
parents of children in a PICU who had undergone open heart surgery, and she identified
several parental stressors, including unfamiliar machinery noise, changes in the child’s
appearance, lack of privacy, and the disrupted sleep and eating patterns experienced by
parents of children in a PICU.
Miles et al. (1989) evaluated the stress levels of 179 parents whose children were
admitted to the pediatric intensive care unit following heart surgery. The researchers
5
found that a major stressor for these parents is the alteration of their parental role, which
means that the parents are stressed because they may no longer be able to do things that
are considered essential to the basic foundation of being parents (Miles et al., 1989).
Also, Goldberg et al. (1991) compared parenting stress among parents of infants with
cystic fibrosis, those with congenital heart disease, and those with healthy babies. The
results of this study revealed that the parents of chronically ill children consistently
experience more stress than those of healthy children, and also that congenital heart
disease in an infant is more stressful for parents than cystic fibrosis. They concluded that
in this population of chronically ill infants, parental stress changes over time and is
affected by the nature and course of the illness.
Although these studies have contributed to our understanding of parenting stress
in the PICU, several gaps remain in the research literature; one of these gaps is that most
of the prior research done on PICU has focused on the immediate stressors associated
with the child’s admission to the PICU (Miles, et al., 1989). But studies have indicated
the importance of assessing other stressors occurring in the family prior to the child’s
admission to the PICU (Leske and Jiricka, 1998), for these additional stressors influence
parents’ level of stress, and how they cope and adjust to the situation.
Another gap in the existing research literature is the small body of research
related to the coping of parents of children who have undergone heart surgery. The first
reported study came from the work of Lewandowski (1980), which identified six general
coping styles used by parents of children who had open heart surgery: (1) initial
immobilization (delay in approaching the child to reduce the impact of the situation); (2)
visual survey (observe and became familiar with the environment before focusing on the
6
child); (3) withdrawal (removed themselves and avoided talking about or with the child);
(4) restructuring (focused on one manageable aspect to regain parental mastery of the
child’s care); (5) assistance (learned how to perform routine medical procedures); and (6)
intellectualization (focused on technological issues and procedures). The author
emphasized the importance of further research into parental coping.
Miles and Carter (1983) have provided a theoretical paper that describes how
Lazarus’ model of coping could be related to parental coping in the PICU. They
developed a tool to measure the coping strategies used by parents in the PICU and staff
behaviors that were rated as helpful by parents. This study had a small sample size, and
was not focused on parents of children who had undergone cardiac surgery, and therefore
may not represent a complete picture of coping strategies utilized by parents of such
children.
Furthermore, theoretical and empirical evidence supports the role of social
support in influencing parents’ abilities to cope and adjust to stressful situations (Carey,
et al., 2002; Katz, 2002; Tak & McCubbin, 2002; Visconti, 2000). Interest in factors that
influence a family’s ability to adjust with stressful situations, like cardiac surgery and the
admission of a child to PICU, has largely focused on the personal characteristics of
family members, maternal uncertainty, the structure and function of the family, the
severity of the child’s illness, and the amount of existing stress within the family
(Tomlinson, Kirchbaum, Harbaugh & Anderson, 1996; Unger & Powell, 1980).
However, resources outside of the family may be equally important in managing a
stressful situation (McCubbin & Patterson, 1983; McCubbin et al, 1996). Nevertheless,
no studies have been done to investigate social support in parents of children with cardiac
7
disease who were admitted to the PICU following heart surgery. So there is a need to
further our understanding of this important concept as it relates to these populations.
In addition, adjustment is crucial for parents of children in the PICU because their
behavior will affect their child’s behavior (Brannan, Heflinfer & Foster, 2000; Melnyk,
Feinstein, Moldenhouer & Small (2001); Melnyk, Small & Garno, 2004). Parents who
have high stress levels and problems in adjustment, will often influence their children
who are admitted to the PICU, and they too will have problems in adjustment. The
literature indicated that children who are admitted to the PICU, such as children with
CHD, are at greater risk of experiencing negative behavioral, emotional, and academic
outcomes than those hospitalized in general pediatric units (Goldberg, et al., 1997;
Griffin, Elkin, & Smith, 2003; Jones, Fiser & Livingston, 1992; Melnyk, et al., 2004).
Moreover, Brannan, Heflinger & Foster (2003), and Schulz and Williamson
(1991) found that if parents become depressed from the strain and stress of caregiving,
then their own health will be impaired, with the possible consequences of unemployment,
child neglect or abuse, and / or marital distress or termination. Thus, providing care to a
child with congenital heart disease could negatively affect the parents’ as well as the
children’s physical and mental health, resulting in additional increased health care costs
(Brannan et al., 2003).
In addition, the literature reveals other gaps in understanding the experiences of
parents caring for children with CHD. Most of the prior research done in PICUs focused
on mothers’ experience. There is a relative dearth of information regarding gender
differences and stress. Although a person’s gender is one characteristic that may affect
the way a stressful stimulus is perceived or reported, most previous studies of parental
8
stress have focused on stressful stimuli only as they affect mothers, and they have
excluded fathers’ perspectives (Graves & Ware, 1990; Loucine, Huckaby & Kessler,
1999). But, by asking only mothers to report their experiences, only their description of
the experience is obtained. This gap limits the validity of research findings with respect
to the view of the family as a unit.
In summary, research on family stress, coping, support and adjustment during a
child’s hospitalization in the PICU after cardiac surgery is limited. Most of the previous
studies included children with a variety of illnesses ignoring possible differences across
illnesses with conflicting results and methodological problems.
Nursing as a Discipline and Meta-Paradigm
According to Schwab (1964), a discipline has both conceptual and syntactical
structures. The conceptual structure of a discipline, which is composed of borrowed or
invented conceptualizations, is determined by the perspectives of the discipline. The
syntactical structure is the patterns of discovering truth and how “truth” is verified.
Donaldson and Crowley (1978) mentioned that nursing is a discipline. As nursing is a
professional discipline, four prominent concepts have been identified representing a
nursing meta-paradigm: person, environment, nursing, and health (Fawcett, 1987/1984).
Paradigms are systems of rules and regulations that create boundaries and direct behavior
in order to ensure success (Baker, 1992).
A nursing meta-paradigm provides a structure from which subject matter relevant
to nursing may be described and/or selected for scientific attention (Kim, 1997).
9
A Person is defined as an open system interacting with the environment, family
members, community, and other groups (Fawcett, 1980). A person is viewed as a human
being who responds to nursing actions.
Environment refers to the internal and external stimuli which can affect the development
and behavior of persons or groups (Roy, 1984). Furthermore, environment has a
comprehensive meaning of psychological, social, or cultural elements (Ellis, 1982).
Health has a varied definition within the nursing discipline. Newman (1986) defined
health as the client’s position on a continuum ranging from wellness to illness. The
World Health Organization (1948) defined health as “a state of complete physical,
mental, and social well-being and not merely [the] absence of disease or infirmity.”
Nursing is the study of caring in the human experience (Newman, Sime, & CorcoranPerry, 1991).
Although the conceptual model of this study is borrowed from another discipline
– psychology – the relationships among the concepts of person, environment, health, and
nursing fit well into the perspective of nursing and its meta-paradigm. Whall and Fawcett
(1991) indicated that the Resiliency Model can be viewed within the context of the
nursing meta-paradigm of person, environment, health and nursing. The relationship
between the four central nursing concepts and the relevant concepts of this study are
described as follows:
(1) Person:
The concept of person includes the parents of children having cardiac surgery.
Additionally, as a person is a human-being; he/she is holistically viewed as composed of
physical, biological, psychological, social, cultural, and spiritual units.
10
(2) Environment:
Environment refers to the internal or external stimuli, including stress arising
from the pile up of stressors, and stress that arises from the pediatric intensive care
environment. These stimuli may lead to parental adjustment or maladjustment.
(3) Health is viewed as a personal perception of family adjustment.
(4) Nursing
Nurses are the primary resource persons who provide information, education and
support for parents who have a child who has undergone heart surgery. To help parents,
nurses must assess their stressors, coping, and adjustment abilities. Nurses must also be
aware of available resources for social support to be able to facilitate parents’ adjustment
to their family’s situation.
Purpose of the Study
The purpose of this study is to explore the relationship between family and child
demographic characteristics, stress, social support, coping, and adjustment in families
who have a child in the PICU after heart surgery, using the resiliency model of family
stress, adjustment and adaptation.
11
Research Questions
Six research questions will be addressed by this study. Data analysis methods will
include descriptive statistical analysis, correlation, and simple and multiple regression
statistical analyses. The research questions and hypotheses are as follows:
1.What are the relationships among family and child demographic variables (the
parent’s and child’s age, parent gender) and (a) stress; (b) coping; (c) social support; and
(d) adjustment.
2. Do stress, coping, and social support affect the adjustment of families of
children who have heart surgery?
3. What are the effects of stress, coping, and social support on family adjustment
while controlling for the parent’s and the child’s demographic factors (parent’s age,
gender, and child’s age)?
4. Does social support moderate the relationship between stress and adjustment in
families of children in the PICU after heart surgery?
5. Does social support have a mediating effect on the relationship between stress
and adaptation in families of children in the PICU after heart surgery?
6. What are the major sources of stress for mothers and fathers when their child is
in the PICU following cardiac surgery?
Theoretical Model
The Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin,
Thompson, & McCubbin, 1996; McCubbin & McCubbin, 1993) will be used as the
theoretical underpinning driving the conceptual model for this study. The Resiliency
Model of Family Stress, Adjustments and Adaptation builds on three previous models:
12
the ABCX model (Hill, 1949), which examined the effect of pre-crises factors on the
protection of families in crises after war separation and reunion; the Double ABCX
model, which has been used to describe both pre-crises and post-crises factors that lead to
adaptation in families which had a member missing in the Vietnam War (McCubbin &
Patterson, 1983); and the Family Adjustment and Adaptation Response Model (FAAR)
(Lavee, McCubbin, & Patterson, 1985), which focused on family efforts to balance
demands and resources. The Resiliency Model was developed to explain why some
families are more resilient than others and are better able to adjust and adapt to stress and
crises. Resiliency is defined as the “positive behavioral patterns and functional
competence individuals and the family unit demonstrate under stressful or adverse
circumstances which determine the family’s ability to recover by maintaining its integrity
as a unit while insuring, and where necessary, restoring, the well-being of family
members and the family unit as a whole” (McCubbin & McCubbin, 1996, p5).
There are two phases of the Resiliency Model: the adjustment and the adaptation
phases. The adjustment phase of the model is considered the first response of the family
to the illness stressors. The goal of the adjustment phase is for the family to manage the
stressor by making short-term and minor changes in their ways of functioning. It consists
of multiple factors such as pile-up of stressors, the family’s types and established patterns
of functioning, the family’s appraisal of the stressor, problem solving, coping, and the
family’s resources that interact following a stressor to support either good adjustment
(bonadjustement) or poor adjustment (maladjustement). A family member’s brief acute
illness with complete recovery is an example of a situation that may require only
adjustment by the family (Friedman, Bowden & Jones, 2003). However, if the stressors
13
demand any major changes in family functioning and maladjustment occurs, then the
family experiences a crisis situation and moves to the adaptation phase of the model
(McCubbin & McCubbin, 1993).
The adaptation phase of the resiliency model encompasses those families who
have experienced maladjustment. During this phase, families must make necessary
changes to patterns of functioning to deal with stressors. Family adaptation is described
as the outcome of family efforts to achieve a new level of balance, harmony and
functioning after a family crisis or stressful situation (McCubbin, et al., 1996). The
strengths and capabilities that the family members share, such as family respect, support,
hardiness, coherence and trust, can promote positive family adaptation (bonadaptation)
through alteration of established patterns of functioning, expanding family resources, and
developing new coping strategies (Friedman et al., 1998; McCubbin, et al., 1996). If
bonadaptation does not occur, families move back into a crisis situation with
maladaptation (Friedman et al, 1998; McCubbin et al, 1996).
The adjustment phase of the Resiliency Model was the basis for this study, and
factors involved with the adjustment phase that relate to this study are briefly discussed.
This phase focuses on accumulation of stressors and strains, family coping abilities, and
family resources which impact family adjustment. In the Resiliency Model, the idea of
stressors is pressure placed on a family that can create changes in the way the family
functions (McCubbin & McCubbin, 1993; McCubbin et al., 1996).When a family
experiences a number of stressors and strains consecutively (i.e., a pileup of stressors,
strains, and life transitions), it may become more vulnerable to stressors and successful
14
adjustment does not occur (Boss, 2002; McCubbin & McCubbin, 1993; McCubbin et al.,
1996).
Family resources include the abilities and characteristics that families have to help
themselves manage the demands of the stressor and which help them successfully adjust
and adapt to stressful life situations (McCubbin et al., 1996). This includes individual
resources such as knowledge, experiences and personality, family resources such as
economic stability and shared beliefs, community level resources such as the support that
family can get from other family, friends and health care professionals (Friedman,
Savarsdottier & McCubbin, 1998; McCubbin et al, 1996; Van Riper, 2001).
Coping in the Resiliency Model refers to a specific cognitive and behavioral
process by which individual members in the family or the family itself attempts to reduce
or manage the excessive demands on the family through the realization that systemic
changes are needed to re-establish functional stability and to manage the situation
associated with the demand (Take & McCubbin, 2002; McCubbin, et al., 1996). Coping
helps families to adjust and adapt to stressful situations through direct actions taken by
the families to reduce stress, such as obtaining and finding additional resources that were
not in the family, managing the tension by doing things together as a family, and
maintaining an optimistic attitude toward the stressful situation (McCubbin, et al., 1996).
Family adjustment in the Resiliency Model can be good (bonadjustment), which
requires only minor changes in family functioning; or it may be poor (maladjustment),
which precipitates a crisis (which is a continuous state of disorganization, disharmony, or
imbalance in the family unit) and requires major changes in family functioning (Friedman
et al., 1998; McCubbin et al., 1996).
15
Application of the Resiliency Model to this Study
Although the Resiliency Model is relevant to a number of disciplines, its use in
the nursing literature exceeds any other single model for studies relevant to the
phenomena of acute and chronic family stress. In addition, the Resiliency Model can be
viewed within the context of the nursing meta-paradigm of person, environment, health
and nursing (Whall & Fawcett, 1991). Although the Resiliency Model has not been used
specifically with regard to children in the PICU after heart surgery, the Resiliency Model
or earlier versions of this model have been used in studies of parents of children in NICU
(Pinelli, 1997), parents with CHD children (Tak & McCubbin, 2002; Savarsdottir &
McCubbin, 1996) and parents of children with other chronic illnesses (LoBiondo-Wood,
Bernier-Henn, & Williams, 1992).
The conceptual framework for this study (p. 18) will be drawn from the first
phase of the Resiliency Model, family adjustment. The concepts derived from the
Resiliency Model are stress, social support, coping and family adjustment. The modifying
factors used for this study are demographic variables. The demographic variables selected
are the parent’s age, gender, and the child’s age. The adjustment phase of the model
explains the family response to illness stressors which require only minor changes in
functioning (Friedman, et al., 2003). Family adjustment, rather than adaptation, will be
the focus of this study because data collection will take place during a period in which
adjustment, rather than adaptation, would be the predominant outcome (24 after the
surgery). A fundamental assumption of the Resiliency Model is that stressful adverse
circumstances do not just affect one member of the family, but they influence the entire
family system (Walsh, 2003). Having a child who is diagnosed with congenital heart
16
disease and admitted to the PICU after heart surgery not only affects the ill child, but it is
a very stressful situation for all the family members, especially the parents (Carter &
Miles, 1984; Elberly et al., 1985; Miles, 1979; Miles & Carter, 1983; Miles et al., 1985;
Miles et al., 1984). When families are confronted with an illness stressor such as
congenital heart disease, they need to adjust or adapt to the situation. The family’s life
will most likely be temporarily or permanently affected due to the results of cardiac
surgery and the PICU admission.
According to the Resiliency Model, the goal of the adjustment phase is for the
family to manage the stressor in the short term without introducing any major or lasting
changes in the family’s established patterns of functioning, and this phase requires only
minor changes in the family unit’s behavior. In cases where families have a child with
congenital heart disease and that child has heart surgery, a family may require to change
the way it functions and try to manage the illness-related stressors by introducing changes
such as modifying the family’s routine, hiring someone outside the family to complete
household tasks, or arranging for childcare for siblings at home or time off of work for
the parents so they can be with their sick child. How the family adjusts to the PICU
experience after heart surgery and whether their adjustment is successful or not depends
on some variables such as the present stressors from the cardiac surgery and the PICU
environment, the earlier stressors and strains that already exist, such as financial strain,
navigating the health care system, the family’s past experience in the PICU, the support
of family and friends, and the family’s coping strategies, as well as the parent’s (or
parents’) gender(s), and the child’s age, along with many other variables (Curely, 1988;
McCubbin & McCubbin, 1993; McCubbin et al, 1996; Philichi, 1989). The outcome may
17
be positive (bonadjustment), in which the family moves through the situation without any
difficulties, or the outcome may be negative (maladjustment), in which the established
patterns of functioning are disrupted and the result is a crisis situation for the family,
where upon the family enters the second phase of the Resiliency Model.
18
Social
Support
Child’s age
Parent’s/ age
Parent’s gender)
Family
Adjustment
Stress
Coping
Figure 1. A conceptual model showing the relationship among independent, dependent,
and control variables among families of children in the PICU after heart surgery
19
Stress
Coping
Construct
Concept
Variables
Empirical
Indicator
*Family Stress
*PICU
Environmental
Stress
-Intra-family
strain
-Stressful family
life events
-PICU
environmental
stress
*FILE
*Parental
stressor scale:
PICU
Coping
Three Coping
Patterns
Coping Health
Inventory for
Parents (CHIP)
Figure. 2 Substruction of the Study
Social
Support
Adjustment
Social
Support
Family
Adjustment
Total Support
Received Last
Month
General Family
Functioning
Communication
Inventory of
Socially
Supportive
Behaviors
(ISSB)
Family
Assessment
Device (FAD)
20
Assumptions
Based on the theoretical model for this study, the assumptions include the following:
1- Cardiac surgery and admitting the child to the PICU is a stressful situation for the
parents.
2- Effective family coping strategies can facilitate positive family adjustment.
3-Family is a complex social system and a holistic unit (McCubbin & McCubbin, 1993).
What has impact on one person in the family also affects the others to some degree. In
this study, parents and children are understood as a whole system rather than simply as
individuals.
Definitions of Terms
The conceptual and operational definitions for the study variables are as follows:
Stress
Conceptual definition. Stress is conceptualized as encompassing dimensions of
environmental stress in the PICU (Miles, Carter, Hennessey, Eberly, & Riddle, 1989) and
the stress arising from intra-family strain and negative family life events (McCubbin et al,
1996).
Operational definition.
1-The rating of the Parental Stressor Scale: Pediatric Intensive Care Unit (PSS:PICU).
2-Accumulation of stressful family life events and intra-family strain that happened prior
to the illness stressor, as perceived by the parents on the Family Inventory of Life Events
(FILE) (McCubbin, 1983).
21
Coping
Conceptual definition. Coping refers to strategies, patterns, and behaviors
designed to maintain and/or strengthen the organization and stability of the family unit
(Patterson & McCubbin, 1983).
Operational definition. The rating of the Coping Health Inventory for Parents
(CHIP).
Social Support
Conceptual definition. Social support refers to the activities directed at assisting
others in mastering emotional distress, sharing tasks, giving advice, information, and
providing material aid (Barrera, 1981; Caplan, 1976; Hirsch, 1980).
Operational definition: The parents’ scores on the Inventory of Socially
Supportive Behaviors (ISSB).
Adjustment
Conceptual definition. Adjustment defined as the parent’s perceptions of the
family’s ability to maintain and perform family functions and effective communication in
response to stressors.
Operational definition. The parent’s ratings score on The General Functioning
and Communication Subscales of the McMaster Family Assessment Device (Epstein,
Baldwin, & Bishop, 1983)
Parent’s Gender
Conceptual definition. Gender consists of the gender of the parents.
22
Operational definition. Gender will be measured using a categorical rating of
male or female status based on each subject’s response to a question regarding his or her
gender.
Parent’s Age
Conceptual definition. The chronological age of the parents at the time of the
study.
Operational definition. The parents’ ages will be determined using the
background information form as self reported by the parents.
Age of the Child
Conceptual definition: It is the chronological age of the child at the time of the
study.
Operational definition: The age of the child will be determined using the
background information form as reported by the parents
23
CHAPTER ΙΙ
Literature Review
The key concepts around which this literature review is presented are congenital
heart disease, stress, coping, social support and adjustment. The review will be organized
into six sections. The first section of the literature review will be an introduction and an
overview of congenital heart disease. The second section will provide an overview of the
literature on stress. The third section will focus on coping. The fourth section will contain
studies pertaining to social support. In the fifth section, studies related to adjustment will
be presented. In the last section, studies related to the relationship among the study
variables will be presented. The review demonstrates diversity of findings and the
poverty of research with regard to the population of interest.
Congenital Heart Disease
A chronic health condition is one that is long-term and not curable, or which
involves limitations in daily living requiring special assistance or adaptations in function
(Stein, 1992; Tansella, 1995). Chronic diseases are one of the major health problems in
the world including the USA. Chronic illness affects people of all age groups and has a
great impact on individuals, families, and society at large. Chronic disease remains the
primary cause of disability and contributes to the suffering and reduced quality of life of
the afflicted and their families (Turner, 1998). In an analysis of the National Health
Interview Survey on Child Health (NHIS-CH) Newacheck and Taylor (1992) found that
20 million American children under age 18 have one or more chronic conditions. Of
these, two-thirds have mild cardiac defects with minimal activity limitations, and 5%
have severe cardiac defects that persistently limit their activities.
24
Scope of the Problem
Congenital heart disease is one of the most serious and most commonly occurring
chronic illnesses in children (Grech & Elliott, 1998). Congenital heart disease involves
structural, positional or functional abnormalities of the heart and/or related major blood
vessels present at birth. It may be acyanotic or cyanotic, depending on whether nonoxygenated blood is present in the systemic circulation system (Friedman, 1999; Lilly,
1998; Porth, 2002). In the USA, CHD is the number one birth defect affecting
approximately 25,000 to 30,000 children each year. At least eight of every 1,000 infants
born each year display congenital heart disease, which is almost one percent of all liveborn infants (American Heart Association, 2006). The mortality rate of these children
may be as high as fifty percent in the first year of life, depending on the condition (NIH
Guide: Pediatric Disease Clinical Research Network, 2000; Hamed & Maher, 2000). As
a result, the economic strain on the health care system that results from caring for CHD
children is significant (Bristow, 1995; Rossiter & Callan, 1993).
Because of the advancement of fetal imaging techniques since 1980, studies
suggest that 30 to 60 percent of congenital heart defects can be discovered prenatally by
fetal echocardiography (Allan, 1996; Gomez, 2003; Goncalves, et al., 2006; Stauffer &
Murphy, 2002). Botto and Correa (2003); Bristow (1995) and Allan (1996) indicated that
the exact etiology of CHD remains elusive in most cases; however, the incidence of CHD
is higher when there is an interaction between some factors in pregnant woman and
genetic susceptibilities. Women at risk of having a CHD child include those with a family
history of CHD, those exposed to rubella during the first three months of pregnancy,
those who are over 40, those with chronic illness such as insulin-dependent diabetes,
25
those who are heavy smokers and who drink a lot of alcohol, or those exposed to drugs
such as indomethacin (Indocin) (Blincoe, 2005; Hobbs, 2006; Martinez, Sian, Klesinman,
& Copel, 1996). Also, chromosomal abnormalities (e.g., Down syndrome) are related to
the increased incidence of heart defects in children (Karmer, et al., 1987; Porth, 2002;
Wong, 1987). The overall occurrence of CHD in the newborn sibling of an affected child
is relatively higher than in the general population (Hamed & Maher, 2000). Both male
and female children are affected equally (Hamed & Maher, 2000; Wong, 1987).
One-third of infants born with CHD develop life-threatening symptoms within the
first few days of life (Saenz, Beebe & Triplett, 1999). Clinical manifestations in infants
are determined by the severity of the defect and the amount of pulmonary blood flow
(Neff & Spray, 1996). General symptoms of congenital heart disease include dyspnea,
tachypnea, growth retardation, decreased exercise tolerance and tissue hypoxia (Whaley
& Wong, 1989). In addition, infants with CHD may show other symptoms such as
fatigue, fatigue difficulties, hypotonia, pallor, sweating, infections, bleeding disorders,
arrhythmias, and problems of growth and development and syncopal attack (Cook &
Higgins, 2000; Whaley & Wong, 1989; Porth, 2002). Difficulty in feeding is reported by
parents of CHD children and is often associated with tachypnea, sweating, and subcostal
retraction (Lobo, 1992; Silove, 1994). CHD should be considered if feeding takes more
than 30 minutes (Silove, 1994).
Advances in the management of children with congenital heart disease has
contributed to improvement in survival (Green, 2004; vanVught, Sreeram, Schroder, &
Vries, 2000). Compared to the previous decade, the vast majority of children born with
CHD who were not expected to survive to adulthood are now surviving (Dastgiri,
26
Gilmour & Stone, 2003; Tong et al., 1998; Sparacino et al., 1997). Progress in prenatal
imaging techniques, surgical procedures, anesthesia, use of prostaglandin E, and a large
number of therapeutic techniques have played a big role in this success (Armstrong,
1995; Jonas, 1995).
Approximately 1 in 5,000 CHD children will require surgical correction of their
heart defect(s) (Hoffman, 1990). Each newborn with a CHD must undergo a careful
evaluation for any additional defects before surgery because a heart defect may be
associated with other congenital defects (vanVught, Sreeram, Schroder & Vries, 2000)
In summary, CHD is a major and serious childhood illness due to its high incidence, high
mortality and the economic strains that it puts on the budget of both families and
communities.
Conceptualization of Stress
Regardless of there being substantial literature on stress, there are still many
issues regarding its conceptualiazation that remain unclear (Smith, 2003). Researchers
have not come to a unified definition of the term. Kugelmann (1992) and Newton (1995)
stated that the concept of stress traces back to ancient Greek texts, which refer to stress as
a vague notion of ill health. Selye (1976, 1956) was the first theorist to become
interested in linking stress with physical disease and ill health in human beings. Selye
divided stress into bad stress and good stress. Good stress was referred to as eustress, and
distress referred to bad stress (Selye, 1976). Selye’s work has encouraged a large number
of other researchers to examine the concept of stress, thereby contributing to an increase
in stress research in the second half of the twentieth century (Goldberger & Breznitz,
1982). Selye (1976) defined stress as a response or state of tension produced by the
27
stressor(s) or by the actual/perceived demand(s) that remain unmanaged. Hinkle (1974)
described stress as a stimulus not a response as had been previously described by Selye.
Hetherington (1984) added the two together (stimulus and response), and defined stress
as a broad interactive network of factors that includes stimulus, response, characteristics
of the individual, interpretation and appraisal of the event, and activation of the
individual to modify or adapt to the situation. Although the definitions of stress are
varied, most researchers agree that stress can be broadly defined as an individual’s
response when the physical or psychosocial demands of a situation exceed the
individual’s ability to adapt (Weinberg & Richardson, 1981).
Family stress and CHD
Two decades ago, children who were acutely or chronically ill, such as children
with congenital heart disease, were cared for in hospitals and other institutions with
limited parental visitation, and parents were often viewed as unqualified to provide care
for their seriously ill children. Moreover, children with chronic illnesses rarely survived
to adulthood. Today, advances in cardiovascular diagnostic and surgical techniques have
reduced the mortality rates of these children. CHD children have experienced an almost
doubling of their life expectancy (Nieminen et al., 2003). However, this increase in their
survival rate has contributed not only to the chronicity of the illness but also to the stress
that the families of these children face (Balluffi, et al., 2004; Hayes, Stainton, & McNeil,
1993; Turner, Tomlinson, Harbaugh, 1990).
Boss (2000, p.16) defines family stress as pressure or tension in the family system
– a disturbance in the steady state of the family. Cohen and Wills (1985) have pointed out
that stress can be assumed to arise when one appraises an event (or combination of
28
events) as highly demanding and does not have suitable coping abilities to deal with it.
Stress of families of children with CHD is ongoing, and this stress starts immediately
after diagnosis. Parental responses to the diagnosis of their child’s chronic condition,
including CHD, commonly include shock, disbelief, depression, frustration, denial, guilt,
confusion and anger (Canam, 1993; Lubinsky, 1994; Rosenthal et al., 2001; Schrey &
Schrey, 1994; Upham & Medoff-Cooper, 2005). Uncertainty regarding the child’s health
condition and his or her possible outcomes, and difficulty in caregiving are major
stressors at the time of diagnosis (Cohen, 1993; Cohen & Martinson, 1988; Wereszczak,
Miles, & Holditch-Davis, 1997; Upham & Medoff-Cooper, 2005). Other stressors that
the parents of children with chronic illness experience immediately after the child has
been diagnosed with a chronic condition include their loss of the imagined healthy child
that they dreamed of and also their fear of the possibility of the potential loss of their
child (Bousso & Angelo, 2003; Cohen, 1993; Upham & Medoff-Cooper, 2005).
Parents of children with CHD reported higher stress than parents of children with
other chronic illnesses. Goldberg, Morris, Simmons, Fowler, & Levison (1990)
conducted a prospective, longitudinal study to compare the responses of parents of
infants with cystic fibrosis (CF), to those of parents whose children have congenital heart
diseases, and parents of healthy infants. Interviews took place within two months of the
diagnosis of the ill newborn. Parents of infants diagnosed with CHD reported more
overall stress than parents of healthy children and parents of children with cystic fibrosis.
Subsequently, Goldberg, Simmon, Newman, Campble, and Fowler (1991) reported on
the effect of CHD on the early infant-mother relationship. Significantly fewer infants
29
with CHD, in comparison with healthy peers, were considered to have secure
relationships with their mothers.
Fathers’ experiences when they have a CHD child have been not well described in
the literature. One of the few studies in this area was done by Clark and Miles (1999).The
researchers explored the experience of fathers whose infants were newly diagnosed with
severe CHD using a qualitative research design. Only 8 fathers participated in the study.
The results indicated that fathers expressed different conflicting feelings regarding their
children’s illness. Fathers expressed their first feelings of joy, excitement about being a
father, and then that joy turned to sadness and distress after learning their child’s
diagnosis. Then fathers started to become attached to the child and at the same time fear
that they will lose their child at any time because of the unpredictable nature of their
child’s disease. Fathers also expressed their attempts at hiding their feelings and emotions
and trying to look strong and supportive in front of their sad wife despite their own
emotional needs and distress.
In addition, the stress of the family with a CHD child has been reported to
continue to exist for months after surgical repair (Gardner, Freeman, Black, & Angelini,
1996; Rogers et al., 1984). In an investigation examining stress across time, mothers of
infants undergoing heart surgery (heart surgery group) were compared to mothers of
infants admitted to the hospital as non-surgical patients (inpatient group) and mothers of
infants attending well-baby visits (outpatient) (Rogers et al., 1984). Questionnaires
assessing maternal distress were completed by mothers of cardiac infants preoperatively,
seven days postoperatively, and at 2 months post discharge and by mothers of the
comparison groups at comparable points in time. The heart surgery group did not differ
30
from the outpatient group on the day of admission. However, the heart surgery group
differed significantly from the outpatient group seven days post surgery, particularly in
the amount of depression mothers were reporting. Although it was hypothesized that the
three groups would not differ two months after the initial contact, the mothers of infants
who underwent heart surgery two months earlier reported more distress relative to the
other two groups. These results suggested that stress associated with having a child with
CHD might continue to exist months after surgical repair of the lesion.
Consistent with the findings by Rogers et al. (1984), the continuing stress of
families who have children with CHD has been observed by other researchers. Gardner et
al. (1996) compared 20 mothers of infants with CHD with 20 non-cardiac mothers. The
results indicated that mothers of children with CHD were more distressed than the
comparison group as measured by the General Health Questionnaire when tested two
days before and six months after a corrective heart surgery. In addition, Gardner et al.
(1996) also assessed the impact stress has on mother-infant interactions by observing
cardiac infant-mother dyads and comparing them to non-cardiac infant-mother dyads,
both prior to surgery and six months post-operatively Results from observing the motherchild interactions indicated that both cardiac infants and their mothers showed less
positive affect and engagement than the comparison group at the pre-operative and postoperative observation sessions. Some mothers had difficulty adapting to their infants,
leading to disordered interactions. Gardner et al. (1996) suggested that more attention,
encouragement and support are needed for parents who have children with congenital
heart disease. The sample studied by Gardner et al., however, was small, and consisted
only of infants who had more serious congenital heart defects.
31
Also, Uzark and Jones (2003) investigated 80 parents (70 mothers and 10 fathers)
with a child 2 years or older with CHD. These parents completed the Parenting Stress
Index (PSI) short form (Abidin, 1990, 1995, 1986). The results indicated that parents of
children older than two years reported excessive parenting stress than the normative
population.
Pelchat et al. (1999) studied stress among 144 Canadian parents in response to
their 6-month-old infant’s type of illness. They compared three groups: parents of
children with CHD, parents of children with a cleft lip and/or palate, parents of children
with Down syndrome and parents of non-disabled children. The results indicated that
parents of children with CHD and parents of children with Down syndrome reported
significantly more stress than the control parents or parents of a child with a cleft lip
and/or palate. Specifically, they reported more stress related to acceptance of their child,
suggesting that a child with CHD has characteristics that do not match the expectations
the parents had for their child.
Difficulty in feeding their infant with CHD can affect the mother-infant
relationship and lead to parental stress (Duhn, 1998; Lobo, 1992). Mothers of infants with
CHD have reported difficulties in feeding (Lobo, 1992; Lobo & Michel, 1995), and
feeding the infant can be the most time-consuming caregiving task (Svavarsdottir &
McCubbin, 1996). A qualitative study (Duhn, 1998) was conducted in which the
researcher interviewed and observed seven mother-baby dyads and found that mothers
reported three identifiable and somewhat overlapping phases in their struggles to feed
their infants for survival. These phases are (a) acknowledging (a mother’s recognition of
the reality of her situation based on her observation of her infant’s behavior, measured
32
against her expectations of a healthy infant); (b) integrating feeding into daily life
(mothers attempt to nourish their infants’ physical and emotional health and to build a
confident relationship with their babies); and (c) developing feelings of control over
feeding (mothers aware of the change in their infant’s feeding abilities and also a change
in their response to the overall feeding experience). The study results are limited due to
the small sample size (seven mothers), and because the mothers were frustrated both in
terms of themselves and their babies.
Parents’ stress related to the severity of the child’s cardiac condition was
investigated by Morelisus, Lundh & Nelson (2002). The researchers assessed the
differences in perceived stress between parents of children with a simple cardiac defect
(ventricular septal defect) and parents of children with a complex cardiac defect
(conduit). They measured stress using the Swedish version of the parenting Stress Index
and the Swedish Parenthood Stress Questionnaire (SPSQ). The results indicated that there
was no significant difference between the stress level reported by the two groups, and this
might indicate that the presence of cardiac disease itself, rather than the complexity and
severity of the defect, is the source of stress for parents.
The previous literature implies that parents of cardiac infants report greater levels
of stress compared to parents of non-cardiac infants.
Family stress and PICU
An additional stressor for the parents of a CHD child is the subsequent admission
of the child to a pediatric intensive care unit (PICU) after heart surgery. The
hospitalization of a child in a PICU is a uniquely stressful experience for both the child
and the family (Board & Ryan-Wenger, 2000; Balluffi, et al., 2004). Mortality rates for
33
children in the pediatric intensive care unit (PICU) range from 5% to 6% (Fiser, 1992;
Pollack, Cuerdon, & Getson, 1993), but 75.4% of the children survive with no
impairment (Fiser, 1992).
A number of studies are available on the stressors experienced by parents in an
intensive care unit; however, little is known about the nature of parents’ stress
surrounding a child’s admission to the PICU after heart surgery. Lewandowski (1980)
was one of the earliest researchers who studied parents of children in a PICU after heart
surgery, and she identified several parental stressors, including unfamiliar machinery
noise, changes in the child’s appearance, lack of privacy, and the disrupted sleep and
eating patterns experienced by parents of children in a PICU. Miles, Carter, Riddle,
Hennessey, & Eberly (1989) evaluated the stress levels of 179 parents whose children
were admitted to the pediatric intensive care unit following heart surgery. The researchers
found that a major stressor for these parents is the alteration of their parental role, which
means that the parents are stressed because they may no longer be able to do things that
are considered essential to the basic foundation of being parents (Miles, Carter, Riddle et
al., 1989). Perceived illness severity was the same for parents of cardiac children and
parents of non-cardiac children at admission, but parents of cardiac children rated illness
severity lower than other parents at the time of data collection (24 to 48 hours after
admission). Higher total stressor scores were related to higher trait anxiety, lower
parental age, higher perceived severity of illness, younger child age, more ICU visitation,
and perception of inadequate pre-PICU preparation (Miles, et al., 1989).
The research on families who have children with CHD admitted to the PICU after
heart surgery is sparse, so other studies that look to parents’ stress experience in PICU
34
regardless of the child’s illness were examined. Carter, Miles and colleagues (Carter,
Miles, Buford, & Hassanein, 1985; Eberly,et al, 1985; Miles, Carter, Spicher, &
Hassanein, 1984) performed three major studies to describe parental stress during a
child’s PICU admission due to different diagnoses (without looking to a certain
diagnosis per se). They developed a conceptual model for understanding parental stress in
the PICU. This model builds on the theories of Selye, Lazarus, Roy, and Moos. They also
developed a scale that builds on their conceptual model: the Parental Stressor Scale
Pediatric ICU. In general, researchers (Carter et al., 1985; Eberly et al., 1985; Miles et al.,
1984) have suggested that the stress response expressed by parents of children in the
PICU is the result of a complex interaction between a number of variables that include
personal-family factors (e.g. parents’ educational level, age, other life stressors),
situational variables (e.g. type of admission, perceived severity) and environmental
stimuli (stimuli arising from the physical and psychosocial aspects of the PICU such as
sights and sounds in the unit, procedures done to the child, the child’s appearance, the
child’s behavior and emotional reaction, parental role alteration, staff communication and
staff behavior). All of these factors interact as sources of stress for parents who have a
child in the PICU. The results of these three studies (Carter et al., 1985; Eberly et al.,
1985; Miles et al., 1984) consistently showed that the child’s behavior and emotions and
alterations in the parental role were the most stressful dimensions for both fathers and
mothers. In particular, items like not being able to protect my child and not knowing how
to help my child, the child’s acting as if in pain, and seeing the child looking frightened
were the most stressful items under these dimensions. Although this program of research
has contributed to our understanding of stress in the PICU, the generalizability of the
35
findings is limited by the homogenous sample of parents surveyed because 85% percent
of the parents who participated in the studies were Caucasian .
Alteration in the parent-child interaction that occurs when the child is hospitalized in
the PICU has been also investigated by Curley (1988). The researcher used a quasiexperimental design to assess the effect of a Nursing Mutual participation model of Care
(NMPMC) on parental stress in the PICU. The participants were divided into two groups:
the experimental group and control group. Parents in both study groups received usual
nursing care from the PICU staff, and those in the experimental group also received the
NMPMC intervention through daily contact with the researcher. Results of the study
showed that families in the experimental group (16 parents) perceived less stress as
compared to the control group (17 parents). The small sample size and lack of
randomization may limit the generalizability of this study.
Haines, Perger and Nagy (1995) compared the stress level of PICU parents whose
children were intubated and parents whose children were not intubated. Researchers
collected their data using PSS: PICU. Results of the study indicated that the most
stressful PICU dimensions for parents were painful procedures, the sight and sounds of
the PICU and child’s behavioral and emotional responses to the PICU. Parents of
intubated children were more distressed by painful procedures conducted on their
children than parents of non-intubated children. Psychometric analysis of the PSS: PICU
was not reported for this study, and this is important since this study was conducted in
Australia and the PSS: PICU was developed and tested with American populations only.
36
Summary
The literature presented above points to the higher levels of stress that families of
infants and children with congenital heart disease have at the time of diagnosis and
during the course of the disease even after repair, and the effect this stress might have on
the parent-child relationship. However, there are several problems with these studies.
Only a few studies focused specifically on parents of children with CHD after heart
surgery. Thus, the effects of the hospitalization of a child undergoing heart surgery on
parents are still unknown. In addition, the timing of the data collection in the studies
varied considerably, and therefore, since the stress level varies for specific stressors over
time the results are confounded by the inconsistency in the time between the child’s
admission to the PICU and data collection. Additionally, much of the analysis was not
done independently for mothers and fathers although at times, more than one parent was
sampled from each family. Also, most of the studies have a small a sample size that
might affect the generalizability of the research findings. Furthermore, when a family has
a child who is seriously and/or chronically ill as are children with CHD, they are rarely
dealing with a single stressor. Cumulative life changes along the course of the illness
have received little attention in the nursing literature. Research with tighter
methodological controls is necessary to improve our understanding of what families of
CHD children experience.
Conceptualization of Coping
Coping is a complex phenomenon that is difficult to understand (Take &
McCubbin, 2002; Beutler, Moose, 2003). The study of coping started in the 1940’s and
50’s during World War II and the Korean War (Lazarus & Folkman, 1984). Although a
37
consensus has not yet been reached on a specific definition of coping, there is general
agreement (Lazarus & Folkman, 1984; Pearlin & Schooler, 1978) that coping is defined
as the constantly changing cognitive or intrapsychic and behavioral or action-oriented
efforts developed to manage and minimize specific internal and external demands that are
found to exceed the resources of the person.
In the view of Friedman et al. (2003) coping is restricted to the actual behaviors or
cognitions people utilize, not to the resources they might use. Folkman and Lazarus
(1984); Monat & Lazarus (1991) explained that coping requires both thought and action,
and an individual first appraises the stressor by identifying it and deciding whether it is
threatening or challenging (primary appraisal). Following this interpretation, the
individual decides whether the coping resources and options available are adequate to
cope with the situation (secondary appraisal).
McCubbin & McCubbin (1993) define family coping as an active process where the
family utilizes existing family resources and develops new behaviors, responses and
resources to strengthen the family and to decrease the influence of stressful life events.
When shifting from the individual level of coping, family coping becomes hard to
explain. Because of the difficulty in assessing family coping efforts, most family coping
research describes a combination of individual and family coping responses utilized by
the family members.
The function of coping as described by McCubin et al. (1996) and Danielson,
Hamel-Bissell & Winstead-Fry (1993) is to maintain and restore the balance between
demands and resources, and at the same time to eliminate or decrease the intensity of the
chronic and/or critical illness and its associated hardships. Positive family coping occurs
38
when the family succeeds in maintaining family equilibrium following an illness stressor.
Coping is necessary for survival, and it determines how successfully the person will
reduce the effects of stressors. McCubbin et al. (1984, 1996) stated that the family can
use available resources from both the family and community to regulate the stressful
situation. The family can use resources from within the family itself such as changing
roles, sharing problems, and also from the community (e.g., social support from relatives
and friends, neighbors, extended family, professional interventions). In addition, in order
for families to have positive coping, families have to use their ability to redefine stressful
events so they become more manageable; they must also accept problems and think how
to deal with it, thereby minimizing their effects (McCubbin, 1985).
Coping and CHD
Although a considerable number of studies have been conducted on congenital
heart disease in children, the coping strategies of their families were represented in only a
small portion of these studies. Savarsdottir and McCubbin (1996) assessed parental
coping behavior in 71 families of infants diagnosed at birth with CHD. Coping was
measured by the Coping Health Inventory for Parents (CHIP) (McCubbin, McCubbin,
Nevin, & Cauble, 1979). The CHIP consists of three subscales measuring three patterns
of coping. Coping pattern I is composed of 19 behaviors that focus on family integration,
cooperation, and an optimistic definition of the situation. Coping pattern II consists of 18
items labeled maintaining social support, self-esteem, and psychological stability. Coping
pattern III contains eight behaviors designated as understanding the health care situation
through communication with other parents and consultation with the health care team.
These researchers found that mothers of infants with more severe CHD reported
39
developing more helpful coping behaviors related to understanding the health care
situation, such as talking to the health care team and with other parents. In addition, there
was no significant difference in the coping patterns of parents of later-born infants and
first-time parents. Almost all the parents were white (98.6%) and middle-class, so the
generalizability of the findings may be limited.
Also, Tak & McCubbin (2002) used the Coping Health Inventory for Parents
(CHIP) (McCubbin et al. 1979) to assess the coping patterns used by 92 families who had
a child 12 years and under who was newly diagnosed with congenital heart decease. The
findings indicated that mothers use coping patterns related to family integration,
optimism, and medical communication, while fathers used coping patterns of maintaining
social support, self-esteem and psychological stability.
Family coping was studied in relation to children with other chronic illnesses. For
example, Brazil and Krueger (2002), in their study of eighty-four parents (49 mothers and
35 fathers) who were primary caretakers of children with asthma, found that mothers
reported a greater tendency than fathers to use coping patterns related to maintaining
social support, self-esteem, and psychological stability. Similarly, McCaleb, and Luther
(1996) used the CHIP to examine the coping patterns of 22 parents of children on home
apnea monitoring. Parents reported that they use all three coping patterns to cope with
their children’s illness. Powers (1986) found that mothers of chronically ill children use
coping patterns related to maintaining social support, self esteem and psychological
stability and understanding health situations more than the fathers in the study.
40
Family coping and the PICU
From the previous studies, we can say that there is a relatively small body of
empirical research focused on the coping of parents of children with congenital heart
disease in general. At the same time, family coping in the PICU after heart surgery has
received very little research attention. These families not only need to cope with lifethreatening surgery involving a vital organ, the heart, but also with the stress that any
parent of a PICU-admitted child faces. However, relatively little empirical research
documenting parental coping in this situation has been conducted
Only one study has been identified in the literature that explored the coping of
parents whose children were undergoing heart surgery. Lewandowski (1980) examined
the stresses and coping styles of parents with children who had undergone open heart
surgery. The researcher used two methods for data collection, observation and interview.
First, she observed 59 parents of children undergoing open heart surgery while they were
visiting their children for the first time in the intensive care unit. Then she interviewed
the parents the day after the child’s surgery, when the child was still in the intensive care
unit or in the general unit. She concluded that parents cope in a variety of ways during
this stressful event. She observed emotional withdrawal from the situation, interest in the
physiological aspects of the child’s condition (intellectualization), and restructuring, or
focusing only on certain parts of the child and the illness as methods that parents used to
deal with their child’s hospitalization in the PICU after open heart surgery. While this
study gives us an understanding of how parents of children who have had heart surgery
cope, it has some faults. The theoretical perspective for the study was not explained. The
questionnaire format for interviews was not presented in the publication.
41
During the period of the child’s hospitalization in the PICU, researchers have
described different coping strategies used by families to cope with their child’s
hospitalization. For example, in (1985) Miles and Carter examined which parental coping
patterns and staff behaviors are rated as helpful by parents of children admitted to the
PICU with different diagnoses. The researchers developed a tool to measure the coping
strategies used by parents in the PICU. This tool was developed from a review of the
literature, other coping scales, and a pilot study done by the researcher. Parents were
asked to identify coping strategies (appraisal-focused coping strategies, problem-focused
coping strategies and emotion-focused strategies) that were used and which were helpful
in relation to the PICU experience. Miles and Carter (1985) found that parents of PICU
children used the following strategies (a) believing the child is getting the best care
possible; (b) receiving as much information about the situation as possible; (c) praying:
(d) being near the child as much as possible; (e) asking questions of the staff and (f)
making sure the child is getting proper care. The generalizability of the findings of this
study is limited by the small sample size; additionally, the psychometric analysis of the
newly developed scale used to measure coping and the pilot study results that the
researchers built their scale on were never reported in the literature
Families viewed participation in their child’s care as a helpful way of coping with
the admission of their critically ill child to the PICU. Noyes (1999) qualitatively assessed
the experience of 10 mothers following an emergent admission of their infants to a PICU.
Data analysis revealed that mothers were afraid, angry, shocked, and physically
exhausted during the first hours of admitting their children to the PICU. Mothers
highlighted how important talking, listening, and doing things for their child were, and
42
support from the nurses was described as a major factor in their ability to cope.
LaMontagne and Pawlak (1990) used a mixed methodological approach to assess what
parents perceive as stressful about their child’s PICU experience and what coping
strategies they utilized to manage the stress. The researchers used the Ways of Coping
instrument developed by Folkman and Lazarus to examine coping strategies in these
situations. The subjects were 30 parents (24 women and 6 men) of children admitted to
the PICU for medical reasons, trauma, and elective surgery. The study indicated that all
of the parents used more emotion-focused forms of coping than problem-focused
strategies. This study focused only on mothers, ignoring the fathers’ experience.
Melnyk, Alpert-Gillis, Hensel, Cable-Beiling, and Rubenstein (1997) conducted a
pilot study to examine the effectiveness of an intervention program called Creating
Opportunities for Parent Empowerment (COPE) on critically ill children and their
mothers’ psychological and coping outcomes. Eight instruments were used to collect data
from 30 parents who were divided to two groups (14 control, 16 experimental). Mothers
in the experimental group provided more emotional support to their children and reported
less negative mood status after transfer from the PICU than mothers in the control group.
Using a phenomenological research design, Carnevale (1990) interviewed 5
families of children admitted to the PICU. Families were interviewed during the first
week following the transfer of their child out of the PICU. During the interview, families
were asked to identify the main source of stress in the PICU environment and how they
dealt with it. Families identified the use of five coping strategies to manage stress. In
addition to social support, as identified by LaMontagne & Pawlak (1990), the study
43
showed these strategies to be cognitive behavior, interpersonal mechanisms, direct action,
and support from the environment.
Summary
The previous studies indicated that most parents with chronically ill children,
including those with congenital heart disease, attempt to use coping strategies/patterns to
manage multiple demands in order to maintain or optimize the well-being and adjustment
of their families. Some parents may have difficulty in using coping strategies/patterns to
deal with situational stresses. These parents may be at risk of maladjustment. In addition
to small sample sizes, there is a small body of research regarding coping among families
of children who have undergone cardiac surgery. The literature also indicates that there is
a need for nurses to facilitate the coping strategies most commonly used by parents of
children with chronic illness, including congenital heart disease.
Conceptualization of social support
Social support is a multi-dimensional concept (Cutrona & Russell, 1990; House,
1981; House & Kahn, 1985; Dewcomb, 1990; Helgeson, 2002; Vaux, 1987) that has not
been measured and defined in a homogenous way (Dewcomb, 1990; Jackson &
Antonucci, 1992). Kahn (1979) viewed social support as interpersonal transactions that
include one or more of the following: the expression of positive affect (feeling liked or
loved) of one person toward another; the affirmation (feeling appreciated or admired) or
supporting and respecting another person’s perceptions, behaviors, or expressed views
and the giving of material such as money or symbolic aid to another. Aneshensel et al.
(1995) defined social support as the degree in which a person’s basic social needs are met
through informal or formal social networks while enhancing health and well-being,
44
regardless of their stress levels. In the social support literature, the terms social support
and social network are often used interchangeably (Ell, 1996). The social network refers
to a web-like structure comprising one’s relationships (Hall & Wellman, 1985). This
network includes family, neighbors, friends, employers, relatives, fellow employees,
professional networks, and groups with which a family shares common goals, interests,
lifestyles or social identity (Friedman, Bowden & Jones, 2003).
There are different types of social support. In spite of the conflict among
researchers on the types of support and which type is more important to consider, most of
the researchers agree that there are three types of support, emotional, instrumental, and
informational (Cohen & Willis, 1984; Ryan & Austin, 1989; Tilden, 1985). Emotional
support refers to personal behaviors such as having someone available to listen, to
provide empathy, reassurance, caring, love and trust. Instrumental or tangible support is
the result of concrete behaviors that help a person directly: the helping person intervenes
personally in the problem situation and takes practical action such as help in household
chores, giving a financial assistance, helping with work responsibilities, or giving some
other form of material aid. Informational support helps individuals help themselves by
providing them with information, guidance or advice that they can use to cope and
manage a stressful situation (Helgeson, 2002; Cohen & Willis, 1984).
The availability of social support can play a vital role in the adjustment of
families of children with a chronic illness such as children with CHD (Carey, Nicholson
& Fox, 2002). The availability of social support may help to stabilize families of children
with chronic illness through reducing the impact of the illness’ stressors, by influencing
the family’s appraisal of the stressor; or by assisting with revision of the family’s world
45
view (Dunst, Trivette, & Cross, 1986; Greenberg, 1983, McCubbin, 1996). Yet the social
support available for families of children with chronic illness such as CHD tends to be
inadequate.
Social Support and CHD
Friedman, et al., (2003, p.483) defined family social support as the social support
that is perceived by family members to be available/accessible to the family (the social
support may or may not be used, but family members perceive that supportive persons
are ready to provide aid and assistance if needed). Family social support can either be
internal family social support, such as spousal support or sibling support; or external
family social support – the social supports external to the nuclear family (within the
family’s social network).
Carey, Nicholson, & Fox (2002) mentioned that social support is an important
factor in facilitating adaptation and adjustment to parenting a child with CHD. However,
the influence of social support on parental stress in families of children with CHD after
heart surgery has been rarely studied. In one of the few studies investigating this issue,
social support was inversely related to parent stress and child behavior (Uzark et al.,
1992). That is, families with more stress reported fewer resources. Also, decreased family
resources were associated with a higher number of behavior problems in their CHD
children. This significant relation between family resources and children’s behavior
problems suggested that social support is a factor that should be assessed in families of
children with CHD.
46
Visconti (2000) investigated the relationship between parental stress and social
support in a sample of 143 parents of children with CHD. This was a longitudinal study
at 1 and 4 years after repairing the cardiac defect (Transposition of Great Arteries). The
investigator used the Parenting Stress Index (Abidin, 1986) to measure parental stress,
and the Social Support Network Inventory (SSNI) (Flaherty, Gaviria, & Pathak, 1983)
was used to measure parental support (network support). The results supported the
authors’ hypothesized relationship that parents who reported less social support would
experience greater levels of stress. There were significant negative correlations between
parental perceptions of stress and social support. Families with less social support
reported more stress at both 1 and 4 years. The results of this study were congruent with
the previous study by Uzark et al. (1992).
Tak and McCubbin (2002) examined the relationship between social support,
stress and coping in 92 families of CHD children. The samples were selected based on
being a parent of a child 12 years old or under who was newly diagnosed with CHD
within the last 3 to 4 months. The instrument used to measure social support was the
Personal Resources Questionnaire (PRQ-85; Weinert & Brandt, 1978). Coping was the
outcome variable and was measured by Coping Health Inventory for Parents (CHIP)
(McCubbin et al. 1979). The mothers’ mean age was 30 years; the fathers’ mean age was
32 years, and the children’s mean age was 1.2 years, and 79% of the children were under
1 year of age. The results showed that the five dimensions of social support (social
integration, intimacy, nurturance, self-worth and assistance/guidance) were positively
related to individual parental coping. The researcher concluded that if a parent perceived
more social support, they might also report a higher level of coping. The results
47
supported the previous literature suggesting a relationship between social support and
coping.
Another study by Katz (2002) investigated social support satisfaction received by
80 fathers and 80 mothers of children with life threatening (LT) chronic illness and
parents of children with non-life threatening (NLT) chronic illnesses. The life-threatening
illness group consisted of parents of children with cancers, heart disease, and a child
suffering from an advanced kidney disorder who was receiving dialysis. The non lifethreatening groups were parents of 40 children with nephrological disease, asthma,
juvenile rheumatic arthritis, and diabetes. The criteria that the researcher used to
distinguish between children with LT chronic illness and NLT chronic illness were based
on the attending physician’s opinion. If the physician anticipated the possible death of the
child within a year after the interview, the chronic illness was considered life threatening.
Katz used the Social Support Questionnaire (London, 1988). The results of the parents
together and the fathers and mothers separately, and the parents of LT and parents of
NLT chronic illnesses were compared using ANOVA. Parents of children with LT and
NLT illnesses reported significant differences in social support. Fathers and mothers of
children with LT illnesses received greater social support in all factors of social support
(emotional support, practical support, and support received from the medical staff).
Social Support and PICU
Investigating social support among families of children who have undergone
cardiac surgery has been ignored in the literature. However, there are some studies that
have investigated social support of parents in the PICU relative to other diseases.
Tomlinson, Kirschbaum, Harbaugh, and Anderson, (1996) explored the relationships
48
among illness severity, family resources, and maternal uncertainty during the initial stage
of a child's hospitalization in a pediatric intensive care unit for a life-threatening illness.
A convenience sample of 40 mothers rated perceptions of uncertainty using Norbeck's
Social Support Questionnaire. Results indicated a positive association between illness
severity and maternal uncertainty and a negative association between family cohesion
and maternal uncertainty.
Research has, however, also addressed the possible negative outcomes of social
support (Tomlinson, & Mitchell, 1992; Rook, 1982; Schuster, Kessler, & Aseltine, 1990;
Finch, Okun, Pool, & Ruehlman, 1999). Negative support refers to the recognition that
support may be also a source of stress (Stewart, 1989; Rook, 1982; Finch, Okun, Sc Pool,
& Ruehlman, 1999). Tomlinson and Mitchell (1992) addressed the possible negative
outcome of social support in their study. They used a qualitative approach to investigate
the nature of family social support during an unexpected admission of a child to the
PICU. Examples of the child’s illness included accidental trauma, acute meningitis, and
acute nephrotic syndrome. A non-random convenience sample of 10 families was
obtained from two pediatric intensive care units. Tape-recorded interviews of parents
took place in the hospital 2 to 13 days after admission to the PICU. Results indicated that
social support can have a negative effect on the families of critical care children. Six of
the 10 families (60%) indicated their frustration over unwanted support, and they felt that
they sometimes had to return the support. The authors suggested that the nurses can
provide a “gatekeeper” role for the family so the family can concentrate on other family
tasks.
49
Conceptualization of Adjustment
Family adjustment is a very complex phenomenon which is defined and assessed
in a variety of ways (Welcher, 1997; Sholomskas et al., 1990; Tennen & Affleck, 1990;
Thomson et al., 1992). Family adjustment in the Resiliency Model is a continuous
process and can be described as good (bonadjustment), which requires only minor
changes in family functioning; or it may be poor (maladjustment), which precipitates a
crisis (which is a continuous state of disorganization, disharmony, or imbalance in the
family unit) and requires major changes in family functioning (Friedman et al., 1998;
McCubbin et al., 1996). Figley (1989) defined family adjustment as the ability of the
family to respond to developmental or situational stressors with appropriate shifts in the
power structure and relationship roles.
Family adjustment is reflected in the characteristics of family functioning
(Ketchum, 2000; Spence, 1992). Families who have the ability to solve their problems,
have established patterns of behaviors and functions, are able to provide nurturance and
support to their members, and have the ability to maintain open communications between
family members are better able to adjust to stressful situations (Epstein, Baldwin, &
Bishop, 1983). Communication has been emphasized as having a very important role in
facilitating family functioning and adjustment (Olson, Sprinkle, and Russell, 1979,1982).
Through the use of communication, the family is able to change its levels of adaptability
allowing for healthy adjustment and growth
Family functioning has been found to be associated with child adaptation in
children with chronic illness (Drotar, 1997; Failla & Jones & King et al., 1999; Soliday et
al., 2001). In a review of research concerning the relationship of parent and family
50
functioning to the psychological adjustment of children with chronic health conditions,
Drotar (1997) concluded that less adaptive family relationships involving greater family
conflict and greater maternal distress predicted problems in adaptation in the child.
McCubbin, McCubbin, Nevin, and Cauble (1981) mentioned that it is important
to assess several dimensions of family life to be able to understand family adjustment.
These dimensions are family stressors, strain and conflicts which make the families
vulnerable to the impact of a subsequent stressor or change; family hardiness, a stress
resistance and adaptation resource in families which would function as a buffer or
mediating factor in mitigating the effects of stress and adaptation over time such as social
support that families can get from friends, relatives and the community; and family
cohesion, which is the expression of unity, support, and emotional bonding between
family members.
Conclusion
Theory development and research about families has increased our knowledge
regarding family adjustment, but it has also contributed to the complex perspective of
family adjustment. As a result of the various theoretical approaches, researchers use the
term family adjustment in different ways. A universal definition of family adjustment has
not been resolved.
Family Adjustment and CHD
Research on the effect of having a child with congenital heart disease on family
adjustment is limited. In a study which examined maternal perceptions and medical
severity on the adjustment of children with CHD, with 99 mother-infant dyads (DeMaso
et al., 1991), investigators concluded that maternal perceptions had a greater impact on
51
the child’s long-term adjustment compared to the severity of illness. Increased maternal
stress, as measured by the Parenting Stress Index (Abidin, 1986), was reported to have
the strongest relationship to the mother’s report of the child’s adjustment. An important
limitation of this study was that the children’s adjustment to their cardiac illness was
based on maternal self-report questionnaires with variable reliability.
In their study of parents of adolescents with CHD, Messias, Gilliss, Sparacino,
Tong, and Foote (1995) examined parents’ reminiscences of the experiences associated
with their infant’s initial diagnosis of CHD. Despite the passage of many years since the
diagnosis, parents had vivid memories of this life-changing event. Messias et al. (1995)
described several themes in the process of adaptation from the crisis of diagnosis to the
incorporation of its meaning to the family. Either infant characteristics or the health care
provider’s verbal and/or nonverbal expressions of concern led parents to the conclusion
that “something was wrong” with their baby. The diagnosis came as a shock, described as
a “rude awakening,” or occurred more insidiously, as data on the infant’s condition
unfolded over time. When parents acknowledged the diagnosis, they were forced to come
to grips with the “illusiveness of normality” as their expectations for a normal child were
profoundly challenged. Through childhood, these parents identified “managing
uncertainty” about their child’s condition and treatment decisions as a characteristic of
their parenting. They faced their child’s mortality in a way not experienced by parents of
healthy children. Finally, to incorporate the reality of having a child with CHD into their
lives, parents created “new meaning” for themselves and their child, using philosophical
or spiritual terms. This included “taking stock,” in which parents evaluated the positive
and negative impact that the diagnosis of CHD had on their family.
52
Uzark et al. (1992) designed a study that was based on the Double ABCX model
(McCubbin, Patterson, 1983) to investigate the psychosocial impact of pediatric cardiac
transplantation on both children and parents. The results indicated that heart transplant
families reported greater family stress than families with children with no chronic
conditions. Also, the pile-up of family stressors and decreased family resources were
important negative correlates of the pediatric heart transplant recipient’s psychological
adjustment, as manifested by behavior problems and social competence.
Difficulty in the adjustment of parents of CHD children has been reported by
researchers outside the USA. For instance, a Swedish study (Lawoko & Soares, 2002)
compared distress and hopelessness among parents of children with congenital heart
disease, parents of children with other diseases, and parents of healthy children. The
sample was comprised of 1,092 congenital heart disease parents, 112 parents of children
with other diseases, and 293 parents of healthy children. The instrument used to measure
distress was the SCL-90-R (Derogatis, 1994). The SCL-90-R is a 90-item 5-point Likert
self-report questionnaire. Items are grouped into nine subscales. The subscales are
somatisation, obsessive-compulsive, interpersonal sensitivity, depression, anxiety,
hostility, phobic anxiety, paranoid ideation and psychoticism. In this study, Lawoko &
Soares (2002) used only the depression, anxiety, and somatisation subscales. Hope was
assessed by the Hopelessness Scale (Beck, Kouacs, & Weissman, 1975). The results
showed that the level of distress was higher in parents of children with CHD than parents
of children with other diseases and parents of healthy children. Parents of children with
congenital heart disease reported greater anxiety and somatisation than parents of healthy
children. In addition, parents of CHD children reported greater levels of hopelessness
53
than parents in the other parent groups. Mothers of CHD children were more distressed
and felt greater degrees of hopelessness than fathers. The strengths of this study were its
use of a large sample size and its use of a comparison group. The limitations were that no
theoretical framework was described in the study, and the instruments were not
thoroughly described.
The same results were obtained by Pelchat et al. (1999), a Canadian researcher
and his team found that parents of CHD children in Canada have higher psychological
distress than parents of children with a cleft lip and/or palate or parents of non-disabled
infants.
Researchers have addressed the effect of a child’s disease on adjustment in
families with other chronic illnesses. For example, Ferrell, Rhine, Shapiro, and Dierkes
(1994) found that some families of children with cancer believed the child’s experience
brought the family closer together, while other families thought the illness caused
relationships to be tense and distant. Sawyer, Antoniou, Toogood, & Rice (1997)
examined the adjustment of young children and their families during the first 2 years after
the child’s diagnosis with cancer. Parental adjustment was assessed by means of the 28item General Health Questionnaire (GHQ), which was designed to measure nonpsychotic psychological impairment in the areas of somatic symptoms, anxiety and
insomnia, social dysfunction, and depression in adults living in the community. Familial
adjustment was assessed using the General Functioning Subscale of the Family
Assessment Device (FAD), and was completed by the mothers in each family.
Also Cadman, Rosenbaum, Boyle, and Offord (1991) surveyed both mothers and
fathers in over 1,800 families sampled to be representative of the population of Ontario,
54
Canada. Mothers of children with chronic illness reported more negative affect than did
those with well children. Mental health treatment was reported 2-3 times more frequently
by these mothers and fathers as compared to parents of well children. However, there
were no differences in single parent families with chronically ill or well children.
Healthy family functioning is an important indicator of family adjustment
(Ketchum, 2000; Spence, 1992). The relationship between mother and father is
important, and a child with chronic illness may cause a strain on this relationship
(Hentinen, 1997).
Rivara et al. (1992) found that the severity of the child’s injury was related to the
degree of stress, quality of relationships, coping, and the interviewer’s rating of global
family functioning at 12 months post-injury. Families with severely injured children had
greater deterioration from 3 to 12 months in terms of psychological strain and well-being
and child/sibling and child/peer relationships. Although there were slight decreases in
interviewer ratings of global family functioning with families of severely injured
children, changes in scores on the Family Environment Scale (FES), the Family
Inventory of Life Events (FILE), and the Coping Health Inventory for Parents (CHIP)
from 3 to 12 months were not significant. This discrepancy could be due to the
differences between insider and outsider perspectives on the family.
Family Adjustment and the PICU
Investigating the adjustment of families of children who have undergone cardiac
surgery has been ignored in the literature. However, there are some studies that
investigate the adjustment of parents in the PICU related to different kinds of diseases.
Philichi (1989) assessed family cohesion and adaptability in 50 parents of PICU children,
55
after the children’s third day in the PICU. The researcher used two measures to collect
data, the Family Adaptability and Cohesion Evaluation Scale (FACES-III) and the
Family Crisis-Oriented Personal Scale (F-COPES). The results of this study indicated
that the majority of families (70%) fell into the balanced categories of adaptability and
cohesion. Comparisons of the parents’ cohesion and adaptability scores with published
norms revealed significantly higher cohesion scores for the PICU parents. Differences
between mothers’ and fathers’ cohesion scores were not significant. However, the
mothers’ adaptability scores were significantly higher than the fathers’ (mothers believed
their families were more adaptable than did fathers). It is not clear from the report
whether the mother-father comparisons were done within families, which would have
strengthened the results, or across families.
Berenbaum and Hatcher (1992) have compared 20 mothers of children in the
PICU with 20 mothers of children on the general pediatric medical surgical unit, and 20
mothers of non-hospitalized children with minor acute illness. The PICU group includes
mothers of children admitted to the PICU with infectious disease, neurological problems,
and respiratory, cardiac and hematologic problems. Data were collected within 24 hours
of the child‘s admission. Mothers of PICU children were significantly more confused,
anxious, angry, and depressed than the mothers of children in the general pediatric and
surgical units and mothers of non hospitalized children. Mothers in each of the groups
experienced their children’s illness differently, but it is not known whether these group
differences during hospitalization produce different long-term effects. All the subjects
were Caucasian, and this might lead to a lack of generalizability of the findings.
56
Several measures were used by family researchers to measure adjustment of
family members when they have a critically ill child. The General Health Questionnaire
(GHQ) examined family psychological adjustment following patient admission to the
hospital for trauma and found that there was no relationship between coping, perceived
severity of injury, or previous life stressors and levels of psychological adjustment (Hill,
1993). Lesk and Jiricka (1998) used the Family Member Well-Being Index (FWBI) and
the Family Assessment Device (FAD) to measure adaptation among families with a
member who has suffered brain injury. Data collection occurred within two days
following the injury, which provided little time for family members to adjust, let alone
adapt to the crisis situation. The results indicated that “pile-up” of life stressors accounted
for 40% of the variance in family adaptation, as measured by the Family Member WellBeing Index (FWBI), and 16% of the variance in family adaptation as measured by the
Family Assessment Device (FAD). These results indicated that the accumulation of life
stressors had a significant negative impact on family adaptation. The FWBI was also used
by another researcher to measure adjustment (Reider, 1989).
Youngblut and Shiao (1993) measured family functioning at 24 hours after PICU
admission and at 2-4 weeks after hospital discharge with a sample of 9 two-parent
families. The mothers’ cohesion scores decreased significantly from Time 1 to Time 2.
Both mothers and fathers scored their families as significantly more adaptable than
published norms, though their cohesion scores did not significantly differ. Greater length
of hospital stay was related to greater satisfaction with family for fathers. However, the
longer the child was intubated, the lower the mother’s perception of family cohesion and
the greater her dissatisfaction with family.
57
In a cross-sectional, comparative study, Youngblut and Lauzon (1995) compared
27 families whose child under 5 years old had been hospitalized in the PICU and general
care unit (GCU). Data were collected within 3 years of their child’s discharge. These
researchers found that the two groups did not differ on their ratings of their family’s
cohesion, adaptability, and satisfaction with relationships, even when the time since
discharge was controlled. However, longer hospital stays and greater severity of illness
were related to lower family cohesion ratings by fathers, and greater severity of illness
scores and being in the PICU group were related to lower adaptability by mothers.
Summary
There were relatively few studies measuring adjustment among families of CHD
children who have undergone heart surgery. Also, research on family adaptation in
families of chronic/critically ill children reflects various interpretations and dimensions of
the term family adjustment, such as family functioning, positive psychological
development, and family adaptability. In addition, the instruments used to measure
adjustment of family members varied greatly. Measurements tended to focus on only one
or a limited number of dimensions of the multifaceted phenomenon of family adjustment.
There is a need to address family adjustment in children who have undergone heart
surgery and to investigate factors that enhance positive family adjustment. It appears that
the conceptualization of adjustment differs for researchers and that many different ways
of measuring adjustment have been attemp McCubbin & McCubbin (1991)
recommended McMaster’s Family Assessment Device (Epstein et al., 1983) for
measuring social adjustment of families of chronic child illness.
58
Linkage Between Study Variables
Social Support, Stress and Adjustment
Social support is often viewed as one of the primary resources that enhances
family adjustment, reduces pileup of demands, and buffers against stress (Fink, 1995;
Grossman, 1995; McColl, 1995; Snowdon, Cameron, & Dunham, 1994; Tomlinson,
Kirschbaum, Harbaugh & Anderson, 1996). Social support is crucial for parents to
successfully cope and adapt to a child’s chronic illness (Mastroyannopoulou, Stallard
Lewis & Lenton, 1997; Tomlinson, Kirschbaum, Harbaugh & Anderson, 1996). Parents
experiencing stress as a result of a child’s chronic illness have described the need for all
kinds of support – informational, emotional, and instrumental – to be able to face the
stress of caring for a chronically ill child (Cohen, 1999; Mercer & Ritchie, 1997;
Patterson & Garwick, 1994).
Moderating effects of social support
Social support has two sorts of effects: mediating and moderating effects
(buffering effect) (Cohen & Wills, 1985; House, Landis, & Umberson, 1988). The
mediating model proposes that social support functions as an intervening variable
between the stressor and outcome (Quittner, Glueckauf, & Jackson, 1990). The
moderating effect proposes that support can buffer the effect of stress (Antonovsky,
1974; Caplan, 1974; Cassel, 1976 & Cobb, 1976).
Some evidence has been obtained for the moderating effect of social support on
parental psychological adaptation to the stressors of caring for a child with a chronic
disease. For example, Speechley and Noh (1992) examined whether the continuing
emotional strain of parenting a child who has survived cancer is associated with elevated
59
levels of psychological distress in parents. The design of this study was cross-sectional.
Data obtained from 63 families (63 mothers and 49 fathers) were compared to a matched
sample of parents (64 mothers and 62 fathers) with healthy children. The two samples of
families were equivalent in terms of family composition and socioeconomic status.
Perceived social support was measured using the Provisions of Social Relations Scale,
which was designed to test respondents’ perceptions of their social relationship in relation
to five of the provisions, including attachment, social integration, reassurance of worth,
reliable alliance, and guidance, on a 5-point scale ranging from “very much like my
experience” to “not at all like my experience.” Depression and anxiety were measured
using the CES-D and STAI, respectively. The results indicated that perceived social
support had a significant inverse relationship with psychological distress for both parents.
When parents of cancer survivors were compared to those of healthy children, there were
no differences in levels of depression or anxiety overall. In addition, stress associated
with the uncertainties surrounding survival from childhood cancer was not related to the
parents’ depression and anxiety.
In addition, the potential buffering effects of social support on parental
psychological adaptation to the stressors of caring for a child with another chronic
disease (sickle cell disease) have been studied by Ievers, Brown, Ambert, Hsu, &
Eckman (1998). They examined the moderating effects of family functioning and social
support on the relationship of child-related stressors to caregivers' psychological
adaptation in a sample of caregivers of children with sickle cell disease. It was
hypothesized that caregivers’ perceptions of their family functioning (more cohesive and
flexible family functioning) and social support (satisfaction with support networks and
60
greater access to resource support) would buffer the effect of potentially stressful child
behavior problems and disease severity on caregivers’ psychological adjustment.
Participants were 67 caregivers of African-American children and adolescents with sickle
cell disease. These researchers found a moderating effect of family functioning on the
association of children's externalizing behavioral problems to caregivers' symptoms of
hostility. Greater levels of cohesive and adaptive family functioning buffered the
potentially detrimental effects of caring for children perceived as hard to manage. No
evidence was obtained for the moderating effect of parents’ satisfaction with their social
networks or their level of resource supports. The participants of this study were African
American caregivers only; thus, the generalizability of the findings could not be made
across various ethnic and culturally diverse groups.
Peterson (1984) tried to investigate if external support mechanisms function as
resources which moderate mothers’ stress related dysfunction associated with their
handicapped child. The prediction of moderating variables was derived from Hill’s
(1949) ABCX Family Crisis Model. Resources, the moderating variable, included
physical and emotional support, sufficient finances to meet medical costs, the presence of
love and affection in the home, and satisfaction with community services for the
handicapped. Petersen’s work offers important information regarding different resources
that may influence the way mothers experience the stress related to caring for a
handicapped child and the role of support in moderating the experience of stress. One of
the limitations of this study was that the researcher did not analyze the possible subscales
within the resources variable. It is possible that one or more of the resources recognized
61
in the instrument were more helpful than others, though this was not analyzed in this
study
Mediating effects of social support
Mediation models have rarely been addressed in the previous studies of families
of children with congenital heart disease. Only one study has been identified that
investigated the effect of social support as a mediator between stress and coping among
parents who have children 12 years and under who are newly diagnosed (in the last 3 to 4
months) with CHD (Tak & McCubbin, 2002). The researchers found no mediating effect
of social support, only a main effect between social support and coping, which shows that
social support is positively related to parental coping.
Stress and Adjustment
The Resiliency Model of Family Stress, Coping and Adaptation (McCubbin,
Thompson, & McCubbin, 1996) proposes that in crises, increases in prior stressors,
strains, and transitions are negatively related to family adaptation and adjustment
outcomes. Kaul (1995) indicated that the overall number of negative stressors that
mothers of children with CHD experienced during the past year are negatively correlated
with the mothers’ psychological adjustment. The same results have been reported by two
different researchers (Leske & Jiricka,1998; and Welcher, 1997). Leske and Jiricka
(1998) used the Resiliency Model of Stress, Coping and Adaptation as a theoretical
model and found that in families of brain injured patients in the PICU, prior stressors,
rather than the actual stressor event (brain injury), adversely influence psychosocial
family adaptation. Prior stress, as measured by the Family Inventory of Life Events
(FILE), accounted for 16% of the variance in family adaptation as measured by the
62
Family Adaptation Scale. The addition of family coping and family resources explained
44% of the variance in family adaptation.
In a descriptive, correlational study, Welcher (1997) assessed the extent to which
the selected variables (family demands, family type, family resources, family appraisal
and family coping) explained and predicted family adjustment in a sample of 75 parent
dyads with a deaf child. Welcher (1997) used McCubbin and McCubbin’s (1993)
Resiliency Model of Stress, Adjustment, and Adaptation as a theoretical framework to
guide the study. Family adjustment was measured by two instruments, The Symptom
Checklist-90-Revised (SCL-90-R) ( Derogatis & Cleary, 1977) and the Family
Assessment Device (FAD) (Epstein et al., 1983). The results indicated that an increased
pile-up of prior stressors, strains, and transitions was related negatively to family
adaptation.
Coping and Adjustment
Little research exists in congenital heart disease populations to explain the
relationship between coping and adjustment. Davis, Brown, Bakeman, & Campbell
(1998) found that emotion-focused coping characterized by self-blaming and avoiding
emotions was negatively associated with maternal adjustment. In addition, there is
incongruence in the research results that have investigated the relationship between
coping and adjustment in other populations with chronically ill children. For example,
Barbarin and Chesler (1984) found that coping strategies are not related to adjustment for
parents. Welcher (1997) found that parental coping as measured by CHIP was not
significantly related to parental adjustment as measured by FAD with deaf children. In
63
contrast, Thompson et al. (1994) found that the use of palliative methods of coping has
been associated with poor adjustment in mothers of children with chronic illness.
Stress, Coping, and Adjustment
The relationship between stress, coping, and adjustment has not been studied in
parents of children with CHD after the child’s admission to the PICU following heart
surgery. One study by Davis et al. (1998) studied which of the following factors predict
adjustment for 52 mothers of children with CHD. These factors were the mother’s and
child’s demographic factors, the mother’s daily hassles, methods of coping, and family
function. The sample included mothers of children in different stages of illness such as
children who were admitted to the hospital for post-surgical monitoring, those admitted
for treating complications after previous cardiac repairs, and preoperative children. These
researchers used the Brief Symptom Inventory (Derogatis, 1975) to measure mothers’
psychological adjustment, the Ways of Coping Questionnaire (Folkman & Lazarus, 1980)
to measure coping, and stress was conceptualized as arising from both daily and illness
related stress. Daily stress was assessed using the Hassles and Uplifts scale developed by
DeLongis, Folkman, and Lazarus (1988). The results indicated that approximately 37%
of the mothers met the criteria for poor adjustment as measured by the Brief Symptom
Inventory. Stress arising from daily hassles and increased use of palliative coping
techniques (using-emotion focused coping such as self-blaming and avoiding emotions)
were negatively related to maternal adjustment. Specifically, the mothers’ coping styles
accounted for 15% of the variance in maternal adaptation. Family support accounted for
only 1% of the variance in maternal adjustment. There were some limitations in this
study such as its small sample size (52) mothers, and most of the mothers were
64
predominantly African-American, and these limitations might affect the generalizability
of the findings. Moreover, the researchers used a stepwise regression as a method of data
analysis, and it was not fully explained by the researchers.
Coping and Stress
Ray and Ritchie (1993) examined 29 parents’ perceptions of the stressfulness of
coping with their chronically ill child’s home care. The parents were the primary
caregivers for children 2 months to 16 years of age who had been diagnosed from 3
months to 7.5 years ago, and who had been receiving illness care at home for 1 to 7
months. Parental stress and coping were assessed using an unsegmented 100 mm visual
analogue scale (VAS) and the Coping Health Inventory for Parents (CHIP), respectively.
Zero millimeters on the VAS represented not stressful at all and 100 mm represented the
most stressful. When regression analysis was performed, coping, as measured by the total
score on the CHIP, was not associated with parental stress.
Effects of Parents’ Demographic Variables on their Adjustment
Gender
Few studies have explored whether differences in adjustment exist between
mothers and fathers of children with CHD in the PICU. The mothers of 68 children
undergoing cardiac surgery demonstrated greater psychological distress and manifested
greater problems than did the fathers (Utens, Versluis-Den Bieman, Verhulst,
Witsenburg, Bogers, and Hess, 2000). Mothers of children hospitalized in the PICU
believed their families were more adaptable than did fathers (Philichi, 1989)
Age
Demographic-related factors can have varied effects on family members as they
encounter potentially stressful situations. Younger mothers of hospitalized children in the
65
PICU exhibited greater emotional distress than older ones (Berenbaum and Hatcher,
YEAR?). (Svavarsdottir & McCubbin, 1996) reported that older mothers reported less
helpful coping related to strengthening family life and maintaining optimism than did
younger mothers. Also, older fathers reported less helpful coping behaviors related to
coping pattern two (managing psychological tension) maintaining social support, selfesteem and psychological stability. Tak and McCubbin (2002) found that younger
mothers reported more helpful coping related to family integration, cooperation and
optimism, and the pattern of medical communication and consultation. Younger fathers
reported more helpful coping related to maintaining social support, self-esteem and
psychological stability.
Effects of Child’s Age on their Parents Adjustment
Svavarsdottir & McCubbin, (1996) found that the age of the child with congenital
heart disease is negatively correlated with fathers’ coping. Fathers who had younger
infants diagnosed with CHD reported more helpful coping strategies in all three areas of
coping as measured by the Coping Health Inventory (family, self, and the health care
situation). On the other hand, more distressed mothers tended to have younger children
with congenital heart disease (Kaul, 1995).
Other studies have explored the association between the age of the child and the
parents’ adjustment in other chronic illnesses. For example Diviney (2001) found that the
child’s age was significantly related to the mother’s coping (r=.34, R2=.12) in their
sample of developmentally disabled children; the author found that the child’s age and
not his/her limitations per se accounted for variations in maternal coping.
66
Conclusion
While many of the studies cited in this review have looked at the family as a
whole, it is usually the mother who bears the greatest responsibility for the child with
CHD. Studies have found that mothers spent more time providing care, offered more
types of support, and perceived more caregiving burden than did fathers. Many of the
studies to date are limited by their lack of operational definitions of stress, coping, social
support and adjustment. More comprehensive assessment of the potential influence that
stress, coping, social support has on family adjustment warrants further investigation.
67
CHAPTER III
Methods
Introduction
The purpose of this study is to explore the relationship between family and child
demographic characteristics, stress, social support, coping, and adjustment in families
who have a child in the PICU after heart surgery. This chapter will describe the
methodology for this study, including the study design, sampling methods,
instrumentation, data collection procedures, data management, data analysis, and
protection of human rights.
The Study Design
The study design is a descriptive correlational cross-sectional design that involves
the collection of data from the population of interest. This study is a non-experimental
study since the independent variables of stress, coping, and social support will not be
manipulated. The ages of the parents and children and the parents’ genders, will all be
statistically controlled since they are extraneous factors known to influence the study
variables. This design was selected for this study following the recommendations of Polit
& Hungler (1999). Cross-sectional correlational studies allow flexibility in investigating
and describing the relationships among phenomena at a fixed point in time. Such studies
also provide a baseline for future and more rigorous research studies (Brink & Wood,
1989). It would have been preferable to use a longitudinal design to explore changes in
family stress, coping, and adjustment over time as the treatment process progressed.
However, practical considerations related to the cost of longitudinal research and the
investigator’s time constraints prevent the use of this methodology at this time. This
68
study will use the Resiliency Model of Family Adjustments and Adaptation (McCubbin
& McCubbin, 1993) to answer the research questions concerning the proposed
relationships among the study variables.
Setting and Sample
Setting
Participants for the study were recruited from the pediatric intensive care unit at
university hospitals of Cleveland and from the pediatric intensive care unit in at the
Cleveland clinic foundation in Cleveland, Ohio.
Inclusion and Exclusion Criteria
The subjects in this study were parents of children (0-12 years old) who have had
heart surgery. The parents must be at least 18 years old. The parents must be able to
understand, speak, read and write English. Additionally, the parents must have completed
the ninth grade and be able to understand the purpose, benefits, and risks of the study.
They must be able to sign a consent form and to understand and answer the questions in
the research instruments. The child can have other physical or developmental disabilities.
Parents of all socioeconomic levels included in the study. The child’s condition must be
stable at the time of data collection. Only one parent per child was included.
A convenience sample of 74 parents (biological, adopted, foster) was obtained
from the Pediatric Intensive Care Unit at University Hospitals of Cleveland. The
advantages of choosing convenience sampling are that it is inexpensive, accessible, and
requires less time than other types of samples (Burns & Grove, 1997). On the other hand,
the disadvantage of convenience sampling is that it provides little opportunity to control
for biases because subjects are included in the study because they happened to be in the
69
right place at the right time (Burns & Grove, 1997). This may result in recruiting subjects
who are not representative of the population of interest and may decrease the
generalizability of the findings. However, convenience sampling is a useful sampling
method and is commonly used in behavior studies (Burns & Grove, 1997).
Recruitment of Subjects
A convenience sample of 74 parents who meet the study’s criteria were recruited
from the Pediatric Intensive Care Unit at University Hospitals of Cleveland and at the
Cleveland Clinic Foundation in Cleveland, Ohio. Parents who meet the study criteria
approached by the investigator 24 hours after their child’s operation, and invited to
participate in the study. Data collection for this study lasted for 17 months. Two hundred
eligible families were approached to participate in the study. Of the 200 eligible families
only 74 families (8 fathers, 66 mothers) agreed to participate in the study. Reasons for
refusal were: did not want to be bothered, too tires, too sleepy, asking the investigator to
come back later to pick up the questionnaire and parents never returned the questionnaire.
Two participants completed and returned the questionnaires but did not sign the consent
form. One participant returned the questionnaire but completed only the first scale
(FILE).These three participants’ data were not included in the analysis. The final sample
size was 74 participants. The response rate was 37%.
Sample Size
The sample size for the study was based on Cohen’s (1988) technique for power
analysis. Power analysis is a method for reducing Type ΙΙ errors; the possibility of
incorrectly accepting a false null hypothesis (Pedhazur & Schooler, 1991). In power
analysis, there are four components: effect size (gamma), significance level (alpha),
70
power (1-β) and sample size (Burns & Grove, 1997; Cohen, 1988; Pedhazur & Schooler,
1991; Polit & Hungler, 1999). When three of the four parameters are known or estimated
by the researcher (effect size), the fourth can be calculated using power analysis, which
for this study is the sample size.
Effect size is defined as the degree to which the null hypothesis is false (Cohen,
1988), and the strength of the effects of the independent variables on the dependent
variables (Polit & Hungler, 1999). The estimated magnitude of the relationship between
independent and dependent variables is important in determining sample size to reduce
the risk of a type ΙΙ error (Polit, 1996). As effect size increases, so does the power. Effect
size can be established by examining the effect size in previous studies or by using a
conservative value (small, moderate or large) (Pedhazur, 1992; Polit, 1996). To answer
the proposed research questions, this study requires the use of correlation and regression
analysis. Previous researchers studied the effect of stress and coping on adaptation of
CHD children (Davis & Brown, 1999), and Kaul (1995) studied the effects of social
support, quality of relationship and stress on psychological adaptation of mothers of
children with congenital heart disease. They found R2=.37 and R2=. 38, respectively,
using multiple regression analysis. The formula provided in Cohen (1998) for estimating
the effect size is as follows:
f= R2/1-R2
Therefore, the effect size for these previous studies will be .58 and .59, which are
considered large effect sizes. Because effect size depends on the types of variables in the
study (Cohen, 1988) and the previous studies used some, but not all of the variables used
in the current study, a medium effect size of .15 will be used to estimate the sample size.
71
The level of significance is the alpha level. This is associated with Type 1 error,
which is the probability of rejecting the null hypothesis when it is true (Stevens, 2002).
An alpha of .05 was chosen based on an analysis of the risks and benefits of Type I
versus Type II error. For this study, the alpha will be set at .05. According to Cohen
(1988), an alpha level of .05 provides the minimum basis for rejecting the null hypothesis
in most areas of behavioral science.
The minimum acceptable power for a behavioral study is .80 (Burns & Grove,
1997). In this study, the power is .80, indicating that there will be an 80% chance of
rejecting the null hypothesis and a 20% risk of a Type ΙΙ error. A Type ΙΙ error occurs
when the null hypothesis is not rejected even though differences actually exist.
Using Cohen’s technique for power analysis, a sample size for correlation and
multiple regression analysis was computed for an alpha of 0.05, a power of 0.80, a
medium effect size of 0.15, and 7 independent variables on the basis of the following
formula:
N= [L/γ] +K+C+1 (Cohen), (whereas lambda (L) from Cohen’s (1988) chart = 15.6,
effect size (f2) = .15, independent variables = 7, and control variables C= 3, a sample size
of 114 was estimated.
N= [15.6/. 15] +6+3+1=114
As indicated above, the necessary sample size for the current study was estimated
to be 114 subjects based on an alpha of 0.05, a power of 0.80, and a medium effect size
of .15. The data collection took about 17 months in order to recruit the obtained sample
size of 74. However, in spite of the researcher’s attempts to get the required sample size
from two different settings, only 74 subjects completed the study.
72
Procedure for Data Collection
Prior to initiating the project, the study was approved by the Institutional Review
Board (IRB) committees at University Hospitals of Cleveland and the Cleveland Clinic
Foundation. Within 24 to 48 hours after the child’s admission to the PICU after heart
surgery, the investigator approached the parent(s) who met the sampling inclusion criteria
and invited them to take part in the study. The investigator informed the parents who
agreed to be in the study of the study’s purpose, data collection procedures, and about the
protection of their confidentiality and their freedom to drop out at anytime. All
information was provided in both verbal and written form. Then the consent form was
given to the parents.
Data collection for this study was self-administered. All the questions for the
study were formatted for self-administration. The questionnaire required about 20-30
minutes to complete. Even if both parents were available, only one parent per child was
asked to complete the questionnaire, and it was left up to the parents to decide who would
complete the questionnaire. Participants were asked to complete the questionnaires in a
paper and pencil format. The advantage of this method is that the questionnaire offers the
possibility of complete anonymity, and there is no interview bias (Polit & Hungler,
1999). The disadvantages of this method are as follows: (a) it is more likely that the
number of unanswered questions will be higher than in an interview and (b) the
researcher will not be available to provide clarification regarding the directions or the
questions, nor can the researcher provide encouragement for the participant to complete
all of the questionnaires in the packet.
73
The researcher put the questionnaire and the information letter in an envelope and
gave it to the participant. The parents were given an opportunity to ask questions before
they were instructed to complete the questionnaires independently. The researcher asked
the parents if they would prefer to complete the questionnaire at that time, in which case
the researcher would wait for them and be available to provide answers to their questions,
or if they would prefer to complete the questionnaire later. Parents were instructed to
place their completed questionnaire in the envelope provided, seal the envelope, and then
deposit it in the designated box at the PICU nurse’s station. The questionnaires were
collected daily from this box or from the subjects on the day following administration.
Instrumentation
Stress
Stress in this study was conceptualized as encompassing the stress arising from
intra-family strain, stressul family life events (McCubbin et al, 1996) and dimensions of
environmental stress in the PICU (Miles, Carter, Hennessey, Eberly, & Riddle, 1989).
Stress was measured using two instruments: (1) the Family Inventory of Life Events
(FILE) and (2) the Parental Stressor Scale: PICU.
Family Inventory of Life Events (FILE)
Family stress will be measured by using a modified short version of the Family
Inventory of Life Events (FILE) (Musil et al., 2001) which consists of 34 yes/no items
(See Appendix A). It is a self-report instrument that is designed to measure the pileup of
stresses and strains experienced by a family during the past year. Two subscales are used
in this study – the Stressful Family Life Events and Intra-family Strain subscales. The
Stressful Family Life Events subscale is composed of 10 dichotomous items while the
74
Intra-family Strain subscale is composed of 9 dichotomous items. The Stressful Family
Life Events subscale contains items that are stressful to families such as “a family
member ran away from home” or “a child died.” The Intra-family Strain Subscale
includes items such as “increased conflict between husband and wife,” “increased
arguments between in–laws and relatives.” The score for the two subscales was
computed by giving each yes response a score of 1. The yes responses were then summed
to arrive at a summary score for the total subscales.
The original FILE (McCubbin, et al., 1996) consists of 72 items arranged in 8
subscales and includes (a) Intra-family Strains, which reflects sources of tension and
conflict between family members and difficulties in enacting the parental role; (b) Marital
Strains, which measure stressors in the marital role arising from sexual or separation
issues; (c) Pregnancy and Childbearing Strains, which relate to pregnancy difficulties or
adding a new member to the family; (d) Finance and Business Strains, which assesses
resources of increased strain on a family’s money supply and strain arising from familyowned businesses or from investments; (e) Work Family Transitions and Strains, which
is related to a family member moving in or out of the work force, changes occurring at
work, or moves made by the family or one of its members; (f) Illness and Family Care
Strains, which reflect dependency needs arising from injury or illness of a family member
or friend or problems with child care, strain related to the onset of or increased difficulty
with chronic illness, and the strain of a member or relative requiring more help or care;
(g) Losses, which reflects losses due to the death or a member’s moving out or moving
back home, or beginning a major involvement outside the family; (h) Transitions In and
Out, which reflects a member or members moving out, or beginning a major involvement
75
outside the family; and (i) Legal, which focuses on a member breaking society’s laws or
mores. The internal consistency reliability of the FILE was initially reported as .72 as
determined by Cronbach’s alpha; however, in later studies (n= 1330 and n=1410) the
reported alphas were .79 and .82; the alpha for the combined sample (n= 2740) was .81
(McCubbin & Patterson, 1996).
Parental Stressor Scale: PICU
Parental stressors were measured using the Parental Stressor Scale: Pediatric
Intensive Care Unit (PSS: PICU) (Carter & Miles, 1984). The PSS: PICU is a 37-item
Likert-type scale designed to measure parental stress arising from seven dimensions of
the ICU: Child’s Appearance (3 items), Child’s Behavior and Emotions (10 items),
Parental Role Alteration (6 items), Sights and Sounds (3 items), Procedures (6 items),
Staff Communication (5 items) and Staff Behaviors (4 items). Stressors are described as
experiences that cause parents to feel anxious, upset, or tense. The dimension “Child’s
Appearance” includes various aspects of the child’s physical appearance, such as bruises
and/or incisions and cuts, which might be a source of stress for parents. The dimension
“Child Behavior and Emotions” includes items which describe various behaviors and
emotional responses which a child might exhibit while in an intensive care unit, such as
confusion, crying, anger, and fear. The dimension “Parental Role Alteration” is
comprised of aspects of the parental role, which have changed because of the illness, such
as separation from the child for long periods of time, not being able to care for the child
personally, and not being able to hold the child. The “Sight and Sounds” dimension
includes aspects of the immediate physical environment, which parents might see or hear,
excluding aspects surrounding their child, such as the steady bleep of monitors and the
76
equipment and machinery. The dimension “Procedures” includes a number of treatment
techniques that might be performed while a child is in an intensive care unit. This
includes routine procedures such as checking temperature and measuring blood pressure
as well as invasive procedures characteristic of acute illness, such as tubes in the child,
suctioning, and respirator treatment. Staff Communication is a dimension defined by a
number of items describing aspects of parent-staff interactions, such as explaining things
too fast and using words that are not understood. Staff behavior encompasses behaviors
that are observed by parents but that are not directly related to staff communication,
including staff joking and laughing, and the staff acting as if they did not like the child
(See Appendix B).
Parents are asked to rate the level of stress produced by the items on a five-point
Likert- type scale ranging from 0 (not stressful) to 5 (extremely stressful). Psychometric
data provided by the instrument developer (Carter & Miles, 1983) showed the test-retest
reliability coefficient to be moderate to high (0.73-0.92) for all dimensions except “PICU
sights and sounds,” which was relatively low (0.58). The questionnaire is easy to
administer and most respondents can complete it in five minutes.
The PSS: PICU can be scored using the seven dimensions as subscales and a total
PSS: the PICU stress score can be computed using all 37 items. The mean score for each
dimension is computed by dividing the sum of the dimension or total scores by the
number of items rated 1 or above. Group means are then calculated from individual mean
scores. In this study a group mean, rather than the mean score of the individual
dimension, was used. The range of scores for each subscale is one to five, providing
equality of expected values for comparison purposes (Carter & Miles, 1983). The
77
questionnaire has gone through several revisions resulting in its current form. Content
validity was evaluated by five doctorally prepared pediatric nursing faculty for the
original study (Miles & Carter, 1983). With regard to internal consistency reliability,
Cronbach’s alpha coefficients range from .72 to .99 for the seven dimensional subscales
and .95 for the total scale score (Carter & Miles, 1983).
Coping
Coping was measured by the Coping Health Inventory for Parents (CHIP)
(McCubbin, McCubbin, Nevin, & Cauble, 1996). The CHIP is a 45-item checklist
designed to assess the types of coping strategies that parents use to manage family life
when their child is seriously and/or chronically ill (See Appendix C).
The development of the CHIP was based on a process of combining behavior
items from previous studies including Caplan (1976), Cobb (1976), Pearlin & Schooler
(1978), Lazarus (1966), and parent communication with the health care team and other
parents of chronically ill children (McCubbin, 1987, p. 176). The score for each coping
behavior ranges from “not helpful” to “extremely” helpful on a 0 to 3 scale. This
instrument consists of three coping patterns. Coping pattern Ι is called Family Integration,
Cooperation, and Optimistic Definition of the Situation. It is composed of 19 behaviors
that focus on strengthening family life and relationships and the parents’ outlook on life
with a chronically/critically ill child. Coping pattern ΙΙ is referred to as Maintaining
Social Support, Self-Esteem and Psychological Stability. This pattern consists of 18 items
that involve the parents’ efforts to develop relationships with others and to engage in
activities that enhance feelings of individual identity and to manage psychological
tensions and pressures.
78
Coping pattern ΙΙΙ contains eight behaviors directed at understanding the health
care situation through communication with other parents and communication with the
health care team, which includes the parents’ relationships with health care professionals
and other parents of chronically ill children as well as ways to increase their knowledge
and understanding of the illness and the mastery of any home-care treatment and
prescribed medical regimens (McCubbin & Patterson, 1991). Internal reliabilities
(Cronbach’s alphas) for the three coping patterns have been found to be .79, .79. and .71,
respectively.
According to McCubbin, Thompson, and McCubbin (1996), the three
factors/subscales have generally good consistency, with Cronbach alphas of .79, .79, and
.71, respectively. Evidence for construct validity is provided by studies of parents with
children who have cerebral palsy and cystic fibrosis (McCubbin, 1987; McCubbin,
McCubbin et al., 1983). These studies support the original factor structure. In addition,
the McCubbin et al. (1983) study provides some evidence of criterion validity for the
CHIP by showing that its coping patterns are significantly associated with dimensions of
family functioning, as measured by the Family Environment Scale and measures of
improvement in their children’s health.
Social Support
Social support was measured by a shortened version of the Inventory of Socially
Supportive Behaviors (ISSB) (Barrera, Sandler, & Ramsay, 1981). The ISSB is a 40-item
self-report measure that requires respondents to report on the frequency of receipt of
socially supportive transactions in the past four weeks using a 5-point scale. The items
are rated from “not at all” (1), to “once every month” (2), “once a week” (3), “several
79
times a week (4), and “every day” (5) (See Appendix D). The responses were summed to
obtain a total score. Barrera et al. (1981) reported coefficient alpha on two separate
administrations and test-retest reliability of the items ranged from a low of .44 to .92.
Factor analysis of the ISSB (Barrera & Ainlay, 1983) suggests that the ISSB has
four underlying factors: (a) Directive guidance, including teaching skills, giving feedback
and providing advice; (b) Non-directive/emotional support, involving expressions of
intimacy, unconditional availability, esteem and trust; (c) Positive social
interaction/cognitive information, such as talking about common interests, joking and
kidding; and (d) Tangible assistance, including providing physical assistance, shelter,
money etc. Although Stokes & Wilson (1984) have revealed a four factor structure, there
are some discrepancies and inconsistencies with regard to the factor loadings of particular
items. For this study, the researcher used a brief 21-item version of the ISSB that was
used by Kaul (1995). Item selection for this form was based on the independent opinions
of three professionals (2 nurses and a social worker) who work with mothers of children
with CHD on a regular basis. Each of them independently selected 21 items from the
original ISSB which they saw as being particularly relevant to this population. Any item
on which two of the three agreed was included in the questionnaire utilized in this
investigation. Twenty-one items met criteria for inclusion. This shortened version of the
scale has a Cronbach’s alpha reliability of .93. The total scale score, rather than the
subscale scores, will be used in this study.
Family Adjustment
Family adjustment was measured by the General Functioning (GF) and
Communication subscales of the Family Assessment Device (FAD) (Epstein et al, 1983)
80
(See Appendix E). Although this study uses only two of the Family Assessment Device
subscales, this section gives an overview of the FAD. The FAD (Epstein et al., 1983) is a
60-item 4-point Likert self-report questionnaire. The FAD is based on the McMaster
Model of Family Functioning (Epstein, Bishop, & Levin, 1987), a clinically oriented
conceptualization of families. Family members (over age 12 with a 6th-grade reading
level) rate their agreement or disagreement with how well an item describes their family.
Lower scores indicate healthy adjustment. Recommended health-pathology cutoff scores
are 2 as reported (Miller, Epstein, Bishop, & Keitner, 1985).
The FAD is composed of seven subscales based on factor analysis of data
obtained from 504 clinical and non-clinical families. Problem solving refers to the
family’s ability to resolve problems. Communication focuses on whether exchanges of
information among family members are clear and direct. Roles focuses on whether the
family has well-established patterns of behavior for handling a set of family functions,
such as providing nurturance and support, supporting personal development, managing
the family systems and considering whether family tasks are carried out conscientiously
by family members. Affective responsiveness focuses on the extent to which individual
family members are able to experience appropriate affect over a range of stimuli.
Affective involvement is concerned with the extent to which family members are
interested in and place value on each other’s activities and concerns. Behavior control
assesses the way in which a family expresses and maintains standards for the behavior of
its members. The General Functioning subscale assesses the overall health/pathology of
the family (Epstein et al., 1983).
81
The GF scale consists of 12 self-report items. The Communication subscale
consists of 9 items. The items in the scales are rated from “Strongly Agree” (1), to
“Agree” (2), “Disagree” (3), and “Strongly Disagree” (4), and they assess family
adaptation. Past research has supported the reliability of the GF and Communication
subscales. The Cronbach’s Alpha for GF scale found by Epstein et al. (1983) was .72,
and for the Communication subscale was .71. Musil et al (2006) also reported Cronbach’s
alphas for the GF scale of .86 and for the Communication subscale α =.71. Additionally,
Welcher (1997) used the FAD to measure adaptation of 150 parents of a deaf child. The
author reported the Cronbach’s alpha for FAD to be .93. In terms of the concurrent
validity of the FAD, it was tested in a study comparing the FAD to the Family
Adaptability and Cohesion Evaluation Scale (FACES) and the Family Unit Inventory
(FUI). Overall, the study obtained very close correlations between the FAD and the FUI
that closely approximated the predicted relationships (Miller et al., 1985). The correlation
between the GF subscale of the FAD and the FUI was found to be-.75 and -.61. Mean
scores of the two subscales can be used to represent family adjustment. The scores for
items describing unhealthy functioning was transformed. The possible range of the scores
ranged from 1.00 to 4.00 with higher scores adjustment.
Data Management
The researcher maintained data consistency and integrity during data collection,
coding and entry. As data was collected, it was coded and entered into a computer file.
Upon completion of the data entry, the data was examined for coding and entry errors.
The accuracy of the data entry was checked in three ways. First, the researcher visually
inspected each entry for its consistency. Second, a list of frequencies for all variables was
82
computed to check the erroneous values. Finally, the researcher and a second person
inspected the data item by item to assure a better accuracy of the data entry. Each subject
is assigned a code, and the subject’s code number is written on each form. A detailed
codebook identifies each variable in this study, including an abbreviated variable name
limited to six to eight characters, a descriptive variable label, and the range of possible
numerical values of every variable was developed for the data file. Only the principle
investigator entered all the study data. The researcher used back-up databases after each
entry period on floppy disk and in the hard drive.
The researcher, as expected in such studies using self reported questionnaires,
encountered missing data. .The pattern of missing data is more important than the amount
of missing data (Tabachick & Fidell, 2000). There are three types of randomly missing
data: missing completely at random, missing at random, and systematic or non-ignorable
missing data (Kline, 1998; Musil, Warner, Yobas & Jones, 2002). Identifying the patterns
of missing data has a direct connection to the way to most appropriately to deal with the
missing observations (Musil et al., 2002). Data that are completely missing at random
pose a less serious problem (Musil et al., 2002). Non-random missing values are serious
and will influence the study’s generalizability (Musil et al., 2002; Tabachick & Fidell,
2001). In this study, there was some randomly missing data. For the missing data, each
item was replaced with an individual mean at the related subscale. Only one case was
excluded because the participant left the Coping Health Inventory, the Inventory of
Socially Supportive Behavior, the FAD General Functioning and the demographic sheets
completely unanswered.
83
The investigator also screened the data for outliers. An outlier is a case with an
extreme value on one variable (a univariate outlier), or a strange combination of scores
on two or more variables (multivariate outlier) (Tabachick & Fidell, 2001). The
researcher used Leverage and Cook’s D values as methods to detect multivariate outliers
(Tabachick & Fidell, 2001).
Data Analysis
The analysis of data were performed using SPSS 11.0 software for Windows. The
data analysis was divided into two parts to answer the research questions: preliminary
analysis and research questions testing. Pearson’s r correlation, multiple regression and
hierarchical multiple regression used to analyze the predictors of adjustment outcome.
Preliminary Analysis
Preliminary data analysis was performed prior to Pearson product Moment
correlation testing and multiple regression analysis. Preliminary analysis included
descriptive analysis which was used to examine the accuracy of data by assessing the
shape of the distribution (normal, skewness, kurtosis), the missing data, the central
tendency ( mean, median and mode), the dispersion (range, variance, and standard
deviation) of the scores for each variables. The univariate and multivariate outliers
examined also by using descriptive statistics. In addition, the preliminary analysis was
conducted to examine and test the assumptions for correlation and multiple regressions.
84
Research Questions Testing
After performing the preliminary data analysis, the analyses of data were
performed using SPSS version 11.0. Six research questions were answered in this study.
Research Question 1: What are the relationships among family and child demographic
variables (the parent’s and child’s age, parent’s gender) and family (a) stress; (b) social
support; (c) coping; and (d) adjustment?
Pearson Product Moment correlation were used to answer whether parent’s age, gender,
child’s age, stress, social support, coping and adaptation, the relationship will be
examined by using Pearson’s r correlation. The value of statistical significance is an
alpha of .05.
Research Question 2: Do stress, coping, and social support affect the adjustment of
families of children who have heart surgery?
Multiple regression analysis was used to answer this research question. The dependent
variable was represented by two subscales (FAD General Family Functioning and FAD
communication) regressed on the independent variables (Stressful family Life events,
Intra-family Strain, the summary score of PSS: PICU,, parental coping (three subscales
that present three coping patterns), and social support as measured by the total score of
ISSB).
Research Question 3: What are the effects of stress, coping, and social support on family
adjustment while controlling for the families and the child’s demographic factors
(parent’s age, gender, and child’s age)?
Two separate hierarchical multiple regressions used to evaluate the effect of family
stress, coping, and social support on family adjustment while controlling for “parent’s
85
age” “parent’s gender,” and “child’s age. The independent variables (stressful family life
events, intra-family strain, PICU environmental stress, coping, and social support)
entered first in the equation. The control variables entered in the last step (parent’s age,
parent’s gender, and child’s age). Parental adjustment represented by the General Family
Functioning and Communication subscales of FAD served as the dependent variable.
Based on the overall R, the amount of variances that account for R2, and the significance
of each of the independent variables, the researcher interpret the results.
Research Question 4: Does social support moderate the relationship between stress and
adjustment in families of children in the PICU after heart surgery?
Hierarchical multiple regression analysis used to test for the moderating effect of
social support on parent’s adaptation. Before doing multiple regression, “centering” of
the independent variables (parental stress, social support) is applied first. Centering is the
conversion of the score to a deviation score so that each variable has a mean of zero
(Tabachick & Fidell, 2001). Since the interaction terms (e.g. stress x social support) may
be correlated to each other, centering is the way to make the high correlation of the
interaction term drop (Tabachick & Fidell, 2001). Centering done by subtracting the
sample mean from all individuals’ score as suggested by (Hombeck, 1997; Tabachick &
Fidell, 2001). The advantage of “centering” is reducing the multicollinearity of the
interaction term and this gives more meaningful interpretations of the regression of the
independent variables and the outcome variables (Finney, Mitchell, Cronkite, & Moos,
1984). After “centering”, the order of entry of the variables was as follow. The predictor
variables (stressful family life events, intra-family strain, and PICU environmental stress)
entered in the first step as predictors of the outcome variable (family adjustment). The
86
moderating variable (social support) will entered in the second step. The independent
variables do not have to be significant predictors of the outcome variable in order to test
for an interaction in the next step (Bennett, 2000). The predictor and potential moderating
variable will be multiplied to create interaction terms (Stressful family life events, intrafamily strain, and PICU environmental stress x social support) entered in the third step.
Each interaction term will be evaluated separately to see the effect on the dependent
variable (adjustment as represented by two measures: FAD general family functioning
and FAD communication). If the interaction term explains a statistically significant
amount of variance in the dependent variable (parental adjustment), a moderator effect is
present (Bennett, 2000).
Research Question 5: Does social support have a mediating effect on the relationship
between stress and adjustment in families of children in the PICU after heart surgery?
To test for the possible mediating effect of social support on the relationship between
stress and adjustment multiple regression analysis was used. Three regression equations
were used.
1. The first equation test if the independent variables (stress as measured by stressful
family Life Events, Intra-family strain, PICU environmental stress) are a significant
predictors of the mediator (social support).
2. The second equation will test if the independent are significant predictors of the
outcome variable (adjustment).
3. The third equation will contain both the independent variables and the mediator
variable entered simultaneously with the outcome variable (adjustment).
87
Two conditions must be met in the third equation if a mediator effect is present: (a) the
mediator is a significant predictor of the outcome variable (adjustment), and (b) the direct
relationship of the independent variable to the outcome variable is becoming nonsignificant or is less significant than it was in the second equation (Bennett, 2000).
Research Question 6: What are the major sources of stress for mothers and fathers when
their child is in the PICU following cardiac surgery?
Descriptive statistics was used to answer this research question.
Protection of Human Subjects
Prior to the initiation of this study, the Human Subjects Review Boards of
University Hospitals and Cleveland Clinic Foundation approved it. Subjects didn’t
exclude on grounds of gender, race, or color. A cover letter, explaining the purpose of the
study, the benefits and risks, confidentiality, and requirements for participation were
given to each subject with the questionnaire. The subjects informed that their
participation is voluntarily and their willingness to participate or not participate will not
affect their care and treatment at the hospital.
Other than the possible inconvenience of completing the questionnaire, there was
no risk involved in participation in this study. However, because of the sensitive nature
of the subject of congenital heart disease, the investigator was concerned that addressing
such questions could raise sensitive issues for some parents There was no direct benefit to
the participants in the study. However, the study provided the parents an opportunity to
express their feelings, and this can be a means of getting some emotional relief. The
parents’ privacy was protected by having the parents complete the questionnaires in the
privacy of the child’s room or a nearby conference room, as desired by the parent.
88
Confidentiality will be safeguarded in the following manner. An identification number
was placed on all forms to ensure the confidentiality of the parents, and the master list
kept with all the data collection forms in a locked file. Only the investigator had access to
those records. Participants in this study were given a verbal and a written description of
the risks, benefits, nonparticipation or withdrawal rights, and assurances of
confidentiality, anonymity, and protection of privacy in order to protect or minimize the
risk of uninformed consent. They clearly informed that the child’s care will not be
affected by the decision to participate or not participate in this study and that they can
withdraw at any point in the study without any impact on the medical care received at the
institution.
89
CHAPTER ΙV
Results
The purpose of this study is to explore the relationship between family and child
demographic characteristics, stress, social support, coping, and adjustment in families
who have a child in the PICU after heart surgery. In addition, this study examined
whether social support has a mediating or a moderating effect on family adjustment. This
chapter presents the study results. The chapter first presents the demographic
characteristics of the subjects and a description of the major study variables. Next,
analyses for the six research questions are presented. SPSS 11.0 for Windows was used to
evaluate all assumptions and to derive the findings.
Parents’ demographic characteristics
The sample of this study consisted of 74 parents (8 fathers, 66 mothers) of
children admitted to the PICU after heart surgery. Subjects were recruited from two
hospitals in Cleveland, Ohio: University Hospitals of Cleveland and the Cleveland Clinic
Foundation. The demographic characteristics of the subjects are presented in Table 1. Of
the parents involved in the study, the majority were female (N = 66, 89.2%). The age of
the participants ranged from 18 to 55 years (M = 34.27, SD = 7.54). Participants were
predominantly married (68.9%), European American (86.5), and Christian (85.5 %). In
terms of education, most of the participants had some college 33.8%; 17.6 graduated
from college, 17.6 completed high school, and 10.8 had attended graduate school. Of the
mothers, 35.1% were not employed, and 55.4% were employed either full time or part
time. However, all the fathers included in the sample (n = 8) reported full time
90
employment status. Parents reported that 97.3% of the children were their biological
children, and 1.4% of the children were adopted.
Table 1
Parent’s Demographic Characteristics
Demographic characteristics
N
%
Age
M(SD)
34.05 (7.7)
Range
18.5-55.1
Gender
Female
66
89.2
Male
8
10.8
European American
64
86.5
African American
7
9.5
Asian American
2
2.7
Others
1
1.4
Married
51
68.9
Single
10
13.5
Not married/living with partner
7
9.5
Divorced
4
5.4
Separated
2
2.7
Ethnicity
Marital Status
91
Table 1
Parent’s Demographic Characteristics (continued)
Demographic characteristics
N
%
Christian
64
86.5
No preference
5
6.8
Jewish
1
1.4
Hindu
1
1.4
Pagan
1
1.4
Jehovah’s Witnesses
1
1.4
Missing
1
1.4
Some college
25
33.8
College graduate
13
17.6
High school graduate
13
17.6
Graduate school
8
10.8
Some high school
7
9.5
Junior high school
4
5.4
Missing
4
5.4
Religious preference
Education
92
Table 1
Parents Demographic Characteristics (continued)
Demographic characteristics
N
%
Employed full time
24
32.4
Employed part time
17
23.0
Unemployed
26
35.1
Sick leave
2
1.5
Home maker
2
1.5
Missing
3
4.1
Less than $10.000
8
10.8
$10.001-$30.000
19
25.7
$30.001-$50.000
15
20.3
$50.001-$75.000
11
14.9
$75.001--$100.000
14
18.9
<100.001
2
2.7
Missing
5
6.8
Biological
72
97.3
Adoptive
1
1.4
Step parent
1
1.4
Mother’s employment status
Income Level
Caregiver type
93
Children demographic characteristics
The majority of the children were male (55.4%) and had no previous cardiac
surgery (63.5%). The age of the hospitalized children ranged from .23 months to 143.77
months (M = 31.34 months); 10.8% of the children were newborn; 29.7% were infants,
and 24.3 % were under 3 years (see Table 2). 82.4% of families know their child’s
diagnosis postnatal.
Table 2
Children Demographic Characteristics
Demographic Characteristics
No
%
Male
41
55.4
Female
33
44.6
No
47
63.5
Yes
27
36.5
Newborn (0- one month)
8
10.8
Infant (greater than one month-12
22
29.7
Toddler (13 months-under 3 years)
18
24.3
Pre-school (3-6 years)
18
24.3
School-age (over 6 years-12 years)
8
10.8
Gender
Previous cardiac surgery
Age
months)
94
Table 2
Children Demographic Characteristics (continued)
Demographic Characteristics
No
%
Prenatal
13
17.6
Postnatal
61
82.4
Timing of Diagnosis
Preliminary data analysis
The preliminary data analysis included the frequencies and descriptive statistics for all of
the variables that were examined.
Descriptions of study variables
Descriptive statistics of the study variables are presented in Table 3. The mean
score of intra-family strain was 2.3 (SD = 2.1) with a range of 0-9. The mean score of
stressful family life events was 1.3 (SD = 1.1), and the number of stressful family life
events ranged from 0-5. Because this is a revised version of FILE there is a limited
number of published comparative studies. In a study by Musil et al. (2006), which used
the same revised version, the authors reported a range of 0-8 on the stressful family life
events subscale, a mean of 1.7 and (SD =1.5). The mean score of intra-family strain was
3.7 (SD = 2.7). The Parental Stressor Scale: PICU was used to measure family stress
arising from the PICU environment. The mean response on the scale was 2.3 (SD = .6).
95
The scores ranged from 1.00 to 3.8 on a Likert scale that ranged from 0, meaning “not
experienced,” to 5, meaning “extremely stressful.” Carter et al. (1985, 1989) reported
mean scores with ranges of 2.1 to 3.3 and 2.0 to 3.3, respectively, with the highest scores
in the dimension of role alteration. Subscale means and SD of this scale are reported in
Table 20
Coping was measured by the Family Coping Health Inventory for Parents (CHIP)
(McCubin et al., 1981). Table 3 shows that participants used the three coping patterns in
different degrees to cope with their situation. Coping pattern Ι, which involves family
integration, cooperation and having an optimistic definition of the situation, was used
more often by the parents (M = 43.71, SD = 7.94) as compared to the other two patterns
of coping (pattern ΙΙ coping : maintaining social support, self-esteem and psychological
stability [M = 24.3, SD = 10.02], and pattern ΙΙΙ coping: understanding the health care
situation through communication with other parents and with the health care team [M =
16.6, SD = 4.8]. The scale’s authors (McCubin et al., 1981) reported comparative
information which was based on data derived from 107 mothers of children with cardiac
disease. The comparative data revealed a mean of 41.8 (SD = 12.4) on pattern I coping, a
mean of 31.9 (SD = 7.7) for pattern II coping, and a mean of 14.9 (SD = 4.6) for pattern
III coping.
In this study, social support was measured by a shortened 21-item version of the
Inventory of Socially Supportive Behaviors (Barrera et al., 1981). The participants
obtained a mean score of 59.7 and SD = 14.07. This version of the instrument’s range is
21-105. The participants in this study obtained a rage of 29-90, indicating they received a
high average level of support from others during the preceding months. The mean of the
96
General Functioning Subscale scores of the FAD for this study was 1.8, with (SD = .5).
Compared to means reported in the literature, the families in the current study were
similar to Miller et al. (1985) and Byles et al. (1988) studies. The current study’s findings
are also in line with findings among grandparents (M = 1.9, SD = .60, n = 486) in a study
by Musil et al., (2006). The mean of the Communication subscale scores of the FAD for
this study is M = 2.1 (SD = .47). This mean is similar to Musil et al.’s study (2006),
which reported a mean of 2.00 (SD = .56, N = 486).
Table 3
Summary of Participants Scores on Major Study Variables and Scales Reliability
Variable
Mean
SD
Range
Skewnes
s
Cronbach
Alphas
Intra-family strain
2.3
2.1
0-9
.8
.73
Stressful family life events
1.3
1.1
0-5
.9
----------
PICU environmental stress
2.3
.6
1 - 3.8
.1
.89
Coping pattern Ι
43.7
7.9
7 - 57
-1.4
.77
Coping pattern ΙΙ
24.3
10.0
0 - 56
.0
.77
Coping pattern ΙΙΙ
16.6
4.4
1 - 24
-.7
.64
Social support
59.8
14.0
29 - 90
-.0
.88
FAD general family functioning
1.8
.5
1 - 3.5
.6
.82
FAD communication
2.1
.47
1.1 – 3.5
.4
.72
97
Analysis of Research Questions
1. What are the relationships among family and child demographic variables (parent’s
and child’s age, parent’s gender) and (a) stress, (b) social support, (c) coping, and (d)
adjustment?
Pearson’s Product-Moment correlation was used to analyze this question. The
value of statistical significance was an alpha level of .05 (see Table 4). Assumptions of
normal distribution, level of measurement, and homoscedasticity were met (Tabachnick
& Fidell, 2001). In this study, stress was measured from two perspectives: stress arising
from intra-family strain and stressful family life events, and stress arising from the PICU
environment. Adjustment was represented by two subscales of the FAD (FAD general
family functioning and FAD communication).
As shown in Table 4, there were significant positive correlations between intrafamily strain and FAD general family functioning (r = .37, p < .01). More intra-family
strain was associated with perceptions of poorer family functioning. There was also a
positive correlation between intra-family strain and FAD communication (r = .31, p <
.01).The more strain there is between a husband and wife, the more problems they have
in communication with each other.
Stressful family life events had a significant positive correlation with FAD
general (r = .33, p < .01). The more stressful family life events that accumulate for the
family, the worse their perception of family functioning. Also, there was a positive
correlation between stressful family life events and FAD communication (r = .33, p <
.01). More stressful events are related to more problems in communication and
98
adjustment as presented by FAD general functioning and FAD communication.
Correlation matrix of all major study variables are presented in table 5.
Table 4
Correlations between Family and Child Demographic Variables (Parent’s Age, Child’s
Age, Parent’s Gender, Family Stress, Social Support, Coping) and Adjustment)
Variables
FAD General Family
FAD
Functioning
Communication
Parent’s age
-.09
-.13
Parent’s gender
.08
.16
Child’s age (months)
.05
.02
Intra-family strain
.37**
.31**
Stressful family life events
.33**
.33**
PICU environmental stress
.16
-.01
Coping pattern Ι
-.18#
-.06
Coping pattern ΙΙ
.03
.14
Coping pattern ΙΙΙ
.13
.19#
Social support
-.16
-.25#
Note.
#
p < .10, *p ≤ .05, **p ≤ .01.
99
2. Do family stress, coping, and social support affect the adjustment of families of
children who have heart surgery?
This question was answered using a liner regression equation. Variables were
entered simultaneously into the equation using intra-family strain, stressful family life
events, PICU environmental stress, three coping patterns, and social support as the
predictor variables. The criterion variables were FAD general family functioning and
FAD communication .The results of these regressions are presented in Tables 5 and 6.
The regression equation using FAD general family functioning as the criterion variable
was significant, F (3.41), p = .00.The variable that had a significant relationship with
FAD general functioning is coping pattern I (ß =.21, p < .05). The regression equation
using FAD communication as the criterion variable was also significant, F (2.62), p =
.02. Stressful family life events had a significant relationship with FAD communication
(ß = .22, p < .05).
Table 6
Effects of Stress, Coping, Social Support on (FAD General Family Functioning)
Variable
B
SEB
ß
Intra-family strain
4.6
.03
.18
Stressful family life events
7.7
.05
.16
PICU environmental stress
.16
.10
.18
Coping pattern Ι
-2.0
.01
-.29*
Coping pattern ΙΙ
4.9
.00
.09
Coping pattern ΙΙΙ
2.9
.01
.25#
100
Table 6
Effects of Stress, Coping, Social Support on (FAD General Family Functioning)
continued.
Variable
Social support
B
SEB
ß
-3.4
.00
-.08
Note. R2 = .26. F = 3.41. ** p <.05. **p < .01. Adjusted R2 = .18.
Table 7
Effects of Stress, Coping, Social Support on Adjustment (FAD Communication)
Variable
B
SEB
ß
Intra-family strain
2.63
.03
.11
Stressful family life events
9.03
.05
.22*
PICU environmental stress
3.05
.09
.04
Coping pattern Ι
-7.99
.00
-.13
Coping pattern ΙΙ
4.75
.00
.10
Coping pattern ΙΙΙ
1.91
.01
.18
Social support
-7.05
.00
-.20#
Note. R2 = .21 F = 2.62 #p <.10, *p <.05. **p <.01 Adjusted R2 = .13
101
3. What are the effects of stress, coping, and social support on family adjustment while
controlling for the parent’s and the child’s demographic factors (parent’s age, gender, and
child’s age)?
FAD general family functioning
A hierarchical multiple regression was used to answer this research question. The
FAD general family functioning subscale was regressed on intra-family strain, stressful
family life events, PICU environmental stress, coping, social support. Both parent and
child age and gender were controlled in the second step. Table 8 shows the predictive
relationships between the set of predictors and FAD general as the dependent variable.
Intra-family strain, stressful family life events, PICU environmental stress, and
social support had a significant effect on family general family functioning (F = 3.40, p <
.002). They accounted for 26% of the total variance of adjustment. Only one of the
regression coefficients was significant: coping pattern Ι (ß = -.30, p < .05). The Coping
ΙΙΙ (ß =.25, p <.07) approached but was not, significant.
When the demographic variables (parent’s age, child’s age, parent’s gender) were
controlled in the second equation, the overall equation remained significant (F = 2.36, p <
.01). The three demographic variables accounted for an additional 1% of the variance in
adjustment, thereby increasing the total explained variance of adjustment to 27 %
(Adjusted R2 = .15). After adding these three variables to the equation, coping pattern Ι
was still significant, and coping pattern ΙΙΙ was still approaching the significance level,
but not significant (see Table 8).
102
Table 8
Summary of Hierarchical Regression of FAD General on Intra-family Strain, Stressful
Family life Events, PICU Parental stress, Coping, and Social Support Controlling for
Parent’s and Child’s Demographics (Parent’s Age, Gender, and Child’s Age)
Variables
B
SEB
ß
Intra-family strain
4.73
.03
.18
Stressful family life events
7.57
.05
.16
PICU environmental stress
.16
.10
.20
Coping Ι
-2.04
.01
-.30*
Coping ΙΙ
4.97
.00
.09
Coping ΙΙΙ
3.00
.01
.25#
Social support
-3.28
.00
-.08
Intra-family strain
4.61
.03
.18
Stressful family life events
7.27
.05
.15
PICU environmental stress
.16
.10
.19
Coping Ι
-2.0
.01
-.29
Coping ΙΙ
4.93
.00
.09
Coping ΙΙΙ
2.95
.01
.24#
Step 1
Step 2
103
Table 8
Summary of Hierarchical Regression of FAD General on Intra-family Strain, Stressful
Family life Events, PICU Parental stress, Coping, and Social Support Controlling for
Parent’s and Child’s Demographics (Parent’s Age, Gender, and Child’s Age)(Continue)
Variable
B
SEB
ß
Child age
1.40
.00
.08
Parents age
-4.28
.00
-.06
Child’s gender
6.31
.19
.03
Note. R2 = .26, Adjusted R2 = .18, R2 change = .26 for Step 1; R2 = .27, Adjusted R2 =
.15, R2 change = .00 for Step 2. #p < .10, *p ≤ .05, **p≤ .01
Adding three more demographic variables to the equation (marital status, prior
surgery, and the child’s gender) accounted for an additional 19 % of the variance in
adjustment, thereby increasing the total explained variance of adjustment to 46 %
(Adjusted R2 = .34) (see Table 9). Four of the regression coefficients were significant:
coping 1 (ß =.32, p <. 05), marital status (ß =.28, p <.05), prior surgery (ß =.30, p <.05),
child gender (ß = -.25, p <.05).
104
Table 9
Summary of Hierarchical Regression of FAD General on Family stress, Coping, and
Social Support Controlling for Parent’s and Child’s Demographics (Parent’s Age and
Gender, and Child’s Age, Marital Status, Child Gender, Prior Surgery).
Variables
B
SEB
ß
Intra-family conflict
4.73
.03
.17
Stressful family life events
7.57
.05
.16
PICU environmental stress
.16
.10
.18
Coping pattern I
-2.04
.01
-.30*
Coping pattern II
4.97
.00
.09
Coping pattern III
3.00
.01
.25#
Social support
-3.28
.00
-.08
Intra-family conflict
2.06
.03
.08
Stressful family life events
7.00
.05
.15
PICU environmental stress
.15
.09
.18
Coping pattern I
-2.22
.00
-.32*
Coping pattern II
5.36
.00
.10
Coping pattern III
2.98
.01
.24#
Social support
-2.97
.00
-.07
Parent’s age
1.08
.00
.15
Step 1
Step 2
105
Table 9
Summary of Hierarchical Regression of FAD General on Family stress, Coping, and
Social Support Controlling for Parent’s and Child’s Demographics (Parent’s Age and
Gender, and Child’s Age, Marital Status, Child Gender, Prior Surgery) (Continued)
Variables
B
SEB
ß
Parent’s gender
2.93
.17
- .00
Child’s age
-1.65
.00
-.02
Marital status
.39
.13
.30*
Prior surgery
.30
.11
.27*
Child’s gender
-.30
.11
-.27*
Note. R2 = .26, Adjusted R2 = .18, R2 change = .26 for Step 1; R2 = .46, Adjusted R2 =
.34, R2 change = .19 for Step 2. #p < .10, *p ≤ .05, **p≤ .01
FAD communication
FAD communication was regressed on social support, coping, intra-family strain,
stressful family life events and PICU environmental stress. Parent’s age, gender and
child’s age were controlled in the second step. Table 10 shows the predictive
relationships between the set of predictors and FAD communication as the dependent
variable. Intra-family strain, stressful family life events, PICU environmental stress, and
social support had a significant effect on FAD communication (F = 2.46, p <.05). They
accounted for 21% of the total variance in communication. None of the variables alone
were significant predictors of communication in the first step of the regression. When the
demographic variables (parent’s age, child’s age, parent’s gender) were controlled in the
second equation, the overall equation was still significant (F=2.03, p <.05). The three
106
variables increased the total explained variance of family communication by 4 %
(Adjusted R2 = .13). Also, after adding these three variables into the equation, still no
single variable was a significant predictor of communication.
Table 10
Summary of Hierarchical Regression of FAD Communication on Intra-family Strain,
Stressful Family Life Events, PICU Environmental Stress, Coping, and Social support
when Controlling for Parent’s and Child’s Demographics (Parent’s Age, Gender, and
Child’s Age)
Variable
B
SEB
ß
Intra-family strain
2.42
.02
.11
Stressful family life events
9.06
.05
.22#
PICU environmental stress
3.75
.09
.04
Coping I
-7.75
.00
-.12
Coping II
4.80
.00
.10
Coping III
1.91
.01
.18
Social support
-7.05
.00
-.20#
Intra-family strain
3.81
.03
.17
Stressful family life events
7.49
.05
.18
PICU environmental stress
1.21
.09
.01
Coping I
-3.12
.00
-.06
Step 1
Step 2
107
Table 10
Summary of Hierarchical Regression of FAD Communication on Intra-family Strain,
Stressful Family Life Events, PICU Environmental Stress, Coping, and Social support
when Controlling for Parent’s and Child’s Demographics (Parent’s Age, Gender, and
Child’s Age)(continued)
Variable
B
SEB
ß
Coping II
4.77
Coping III
1.38
.01
.13
Social support
-7.41
.00
-.21#
Parent’s age
-6.97
.00
-.11
.23
.17
.15
-1.70
.00
-.01
Parent’s gender
Child’s age
.10
Note. R2 = .21, Adjusted R2 = .13, R2 change = .21 for Step 1; R2 = .25 Adjusted R2 =
.13, R2 change = .03 for Step 2. #p < .10, *p <.05, **p < .01
Adding three more demographic variables to the equation (marital status, prior
surgery, child’s gender) accounted for 33% of the total variance in adjustment. Only one
of the regression coefficients was a significant predictor of communication: prior surgery
(ß=.23,p <.05).
108
Table 11
Summary of Hierarchical regression of FAD communication on intra-family strain,
stressful life family events, PICU parental stress, coping, and social support when
controlling for parent’s and child’s demographics (parent’s age and gender, and child’s
age, marital status, child’s gender, and prior surgery)
Variable
B
SEB
ß
Intra-family strain
2.42
.02
.11
Stressful family life events
9.06
.05
.22#
PICU
3.75
.09
.04
Coping pattern Ι
-7.60
.00
-.12
Coping pattern ΙΙ
4.80
.00
.10
Coping pattern ΙΙΙ
1.91
.01
.18
Social support
-7.05
.00
-.20#
Intra-family strain
2.14
.03
.09
Stressful family life events
7.72
.05
.19
PICU
1.15
.09
.01
Step 1
Step 2
109
Table 11
Summary of Hierarchical regression of FAD communication on intra-family strain,
stressful life family events, PICU parental stress, coping, and social support when
controlling for parent’s and child’s demographics (parent’s age and gender, and child’s
age, marital status, child’s gender, and prior surgery)(continued)
Variable
B
SEB
ß
Coping pattern Ι
-4.04
.00
-.06
Coping pattern ΙΙ
5.72
.00
.12
Coping pattern ΙΙΙ
1.34
.01
.12
Social support
-6.76
.00
-.20#
Parent’s age
1.75
.00
.02
Parent’s gender
.22
.17
.14
-1.01
.00
-.06
Marital status
.12
.12
.10
Prior surgery
.23
.10
-.23*
Child’s gender
-.20
.11
-..22#
Child’s age
Note. R2 = .21, Adjusted R2 = .13, R2 change = .21 for Step 1; R2 = .33, Adjusted R2 =
.19, R2
110
4. Does social support moderate the relationship between stress and adjustment in
families of children in the PICU after heart surgery?
In order to examine for a moderating effect of social support on parent’s
adjustment (FAD general family functioning, FAD communication), hierarchical multiple
regression was conducted. Before conducting the analysis, “centering was conducted with
the independent variables (stressful family life events, intra-family strain, PICU
environmental stress, and social support). Centering is done by subtracting the mean of
each variable from the respondents’ scores to in order to decrease the multicolliniarity
between the independent variables. The independent variables are entered in the first step
as predictors of the outcome variable (family adjustment as measured by FAD). The
moderating variable (social support) is entered in the second step. Three interaction terms
(intra-family strain x social support, stressful family life events x social support, and
parental stress as measured by the total score on the PSS: PICU scale x social support)
were computed from mean-centered scores and entered in the third step. If the interaction
term explains a statistically significant amount of variance in the dependent variable
(adjustment), a moderator effect is present (Bennett, 2000).
Intra-family strain, social support and FAD general
As indicated in Table 12,intra-family strain was a significant predictor of general
family functioning at in the first step (ß=.37, p <.001). Social support was not a
significant predictor of adjustment in the second step, yet intra-family strain remained a
significant predictor of adjustment in the second step (ß=.35, p < .001). As shown in
Figure 3, the extent to which intra-family strain impact FAD general functioning
111
depending on the level of social support. The interaction term (intra-family strain x social
support) was significant at step 3 (ß = -.22, p < .05).
Table 12
Summary of Hierarchical Regression of Adjustment (FAD General Family Functioning)
on Intra-family Strain and Social Support with Intra-family Strain x Support
Variable
B
SBE
ß
9.40
.02
.37*
Intra-family strain
8.93
.02
.35*
Social support
-2.61
.00
-.06
Intra-family strain
6.89
.03
.27*
Social support
-3.39
.00
--.06
Intra-family strain x Social support
-3.46
.00
- .23*
Step 1
Intra-family strain
Step 2
Step 3
Note. R2 = .14, Adjusted R2 = .12 for Step 1; R2 = .33, Adjusted R2 = .12, Step 2; R2 = .19,
Adjusted R2 = .15 for Step 3. *p ≤ .05, **p≤ .01
Stressful family life events, social support and FAD general family functioning
As indicated in Table 13, stressful family life events was a significant predictor of
general family functioning in the first step (ß=.33, p < .001). Social support was not a
significant predictor of general family functioning in the second step while stressful
family life events was still a significant predictor of adjustment in the second step (ß=.33,
p < .001). The interaction term (stressful family life events x social support) was
112
significant at step 3 (ß= -.26, p < 05). As shown in Figure 5, the extent to which stressful
family strain impact FAD general functioning depending on the level of social support.
Table 13
Summary of Hierarchical Regression of Adjustment (FAD general family functioning) on
Stressful Family Life Events and Social Support with Stressful Family Life Events x
Support
Variable
B
SEB
ß
.15
.05
.33*
Stressful family life events
.15
.05
.33*
Social support
-5.7
.00
-.15
.11
.05
.24*
Social support
--6.6
.00
-.17
Stressful family life events x Social
-8.02
.00
-26*
Step 1
Stressful family life events
Step 2
Step 3
Stressful family life events
support
Note. R2 = .11, Adjusted R2 = .10 for Step 1; R2 = .13, Adjusted R2 = .11 for Step 2; R2 =
.19, Adjusted R2 = .16 for Step 3.*p ≤ .05, **p≤ .01
Pediatric ICU environmental stress, social support and FAD general family functioning
As indicated in Table 14, PICU environmental stress was not a significant
predictor of adjustment (FAD general family functioning) in the first, second or third
steps. Social support was not a significant predictor of adjustment in the second step. The
113
interaction term (PICU environmental stress x social support) was not significant at step
3 (ß = -.00). These results indicate that there is no moderating effect of social support
between parental stress from the PICU environment and general family functioning.
Table 14
Summary of hierarchical regression of adjustment (FAD general) on parental stress in
the PICU and social support with PICU environmental stress x support
Variable
B
SEB
ß
.14
.10
.16
.18
.10
.20#
-7.91
.00
-.20#
.17
.10
.20#
Social support
-7.96
.00
-.20#
PICU environmental stress x
1.96
.09
-.00
Step 1
PICU environmental stress
Step 2
PICU environmental stress
Social support
Step 3
PICU environmental stress
social support
Note. R2 = .02, Adjusted R2 = .01 for Step 1; R2 = .06, Adjusted R2 = .04 for Step 2; R2 =
.06, Adjusted R2 = .02 for Step 3. #p< .10 *p < .05, **p < .01
Stressful family life events, social support and FAD communication
As indicated in Table 15, stressful family life events was a significant predictor of
FAD communication in the first step (ß =.33, p < .001). Social support was a significant
predictor of FAD communication in the second step (ß =.24, p <.05), and stressful family
114
life events was still a significant predictor of FAD communication in the second step (ß
=.32, p < .001). The interaction term (stressful family life events x social support) was
not significant at step 3 (ß = -.20, p =.15). This indicates that social support is not a
moderator between stressful family life events and FAD communication.
Table 15
Summary of Hierarchical Regression of Adjustment (FAD Communication) on Stressful
Family Life Events and Social Support with Stressful Family Life Events x Support
Variable
B
SEB
ß
.13
.04
.33*
.13
.04
.32*
-8.23
.00
-.24*
.10
.04
.25*
Social support
-8.82
.00
-.26**
Stressful family life events x social
-5.56
.00
-.20#
Step 1
Stressful family life events
Step 2
Stressful family life events
Social support
Step 3
Stressful family life events
support
Note. R2 = .11, Adjusted R2 = .09 for Step 1; R2 = .17, Adjusted R2 = .14 for Step 2; R2 =
.20, Adjusted R2 = .14 for Step 3. #p =.10 *p < .05, **p < .01
115
Intra-family strain, social support and FAD communication
As indicated in Table 16, intra-family strain was a significant predictor of
adjustment in the first step (ß =.31, p < .001). Social support was not a significant
predictor of adjustment in the second step, but intra-family strain was still a significant
predictor of adjustment in the second step (ß = .26, p < .001). The interaction term (intrafamily strain x social support) was not significant at step 3 (ß=-.12). This result indicates
that social support does not act as a moderator variable between intra-family strain and
FAD communication.
Table 16
Summary of Hierarchical Regression of Adjustment (FAD Communication) on Intrafamily Strain and Social Support with Intra-family Strain x Social support
Variable
B
SEB
ß
6.91
.02
.31**
Intra-family strain
5.79
.02
.26*
Social support
-6.30
.00
-.18#
Intra-family strain
4.95
.02
.22#
Social support
-6.63
.00
-.16#
Intra-family strain x social support
-1.44
.00
-.10
Step 1
Intra-family strain
Step 2
Step 3
Note. R2 = .09, Adjusted R2 = .08 for Step 1; R2 = .13, Adjusted R2 = .10 for Step 2; R2 =
.14, Adjusted R2 = .10 for Step 3. #p < .10 *p < .05, **p < .01
116
Pediatric ICU environmental stress, social support and FAD general family functioning
As indicated in Table 17, parental stress in the PICU was not a significant
predictor of adjustment in the first step (ß=.01) or in the second ( ß=.03 ) or third step
(ß=.04 ). Social support was a significant predictor of FAD communication in the first
(ß=.23, p < .05 ) and second (ß =.20, p< .05 ) steps. The interaction term (PICU
environmental stress x social support) was not significant at step 3 (ß=-.07). These results
indicate that there is no moderating effect of social support between parental stress from
the PICU environment and FAD communication.
Table 17
Summary of Hierarchical Regression of Adjustment (FAD Communication) on PICU
Environmental Stress and Social Support with PICU Environmental Stress x Support
Variable
B
SEB
ß
-1.34
.08
-.01
PICU environmental stress
2.69
.08
.03
Social support
-8.94
.00
-.26*
3.57
.09
.04
Social support
- -9.84
.00
-.29*
PICU environmental stress x social support
-5.70
.00
-.07
Step 1
PICU environmental stress
Step 2
Step 3
PICU environmental stress
Note. R2 = .00, Adjusted R2 = -.01 for Step 1; R2 = .06, Adjusted R2 = .04 for Step 2; R2 =
.07, Adjusted R2 = .03 for Step 3. #p < .10 *p < .05, **p < .01
117
5. Does social support have a mediating effect on the relationship between stress and
adjustment in families of children in the PICU after heart surgery?
In order to test for a mediating effect of social support on the relationship between
stress (intra-family strain, stressful family life events, PSS/PICU) and adjustment (FAD
general, FAD communication) three separate regressions were conducted. In the first,
stressful family life events was regressed on social support; in the second, intra-family
strain was regressed on social support; and in the third, PICU environmental stress was
regressed on social support. As shown in Table 17, only one of the regression parameters
was significant (intra-family strain). So this is the only variable that will be examined for
a mediating effect in the next step.
Table 18
Effects of the Independent Variables on the Mediator Variable (Social Support)
Independent variables
R2
Adjusted R2
F
P
Stressful family life events
.00
-.01
.05
.81
Intra-family strain
.07
.06
5.97
.01*
PICU environmental stress
.04
.02
3.08
.08
In step 2, only intra-family strain was regressed on FAD general family
functioning. As shown in Table 19, intra-family strain was a significant predictor of the
FAD general family functioning ( ß =-.28*, p <.001). In the third step, both intra-family
strain and the mediator (social support) were regressed on FAD general adjustment. Two
conditions must be met in the third equation if a mediator effect is present: (a) the
118
mediator is a significant predictor of the outcome variable (FAD general family
functioning), and (b) the direct relationship of the independent variable with the outcome
variable is becoming non-significant or is less significant than it was in the second
equation (Bennett, 2000). As shown in Table 19, these two conditions didn’t hold, so
there was no mediating effect of social support on the relationship between intra-family
strain and adjustment as measured by FAD general family functioning subscale.
Table 19
Effects of Intra-family Strain on Adjustment (FAD General Family Functioning)
Variables
Intra-family strain
Social support
Step 2
Step 3
B
ß
B
ß
9.40
.37*
8.92
.35*
-2.61 -.06
Intra-family strain was also regressed on FAD communication. As shown in Table
20 intra-family strain was a significant predictor of FAD communication (ß =-.31*, p <
.001). In the third step, both intra-family strain and the mediator (social support) were
regressed on FAD communication. Two conditions must be met in the third equation if a
mediator effect is present: (a) the mediator is a significant predictor of the outcome
variable (FAD communication), and (b) the direct relationship of the independent
variable to the outcome variable is becoming non-significant or is less significant than it
was in the second equation. As shown in Table 20, these two conditions didn’t hold, so
119
there was no mediating effect of social support on the relationship between intra-family
strain and adjustment as measured by the FAD communication subscale.
Table 20
Effects of intra-family strain on adjustment (FAD communication)
Variables
Intra-family strain
Social support
Step 2
Step 3
B
ß
B
ß
6.91
.31*
5.97
.27*
-5.14 -.15
120
6. What are the major sources of stress for mothers and fathers when their child is in the
PICU following cardiac surgery?
Table 20 shows the mean and SD of the total sample’s (N = 74) scores on the Parental
Stressor scale: Pediatric Intensive Care Unit (PSS/PICU). The table shows that the
dimension ranked most stressful in the PICU was alteration of parental role (Mean =
2.86, SD = 1.11). The second most stressful dimension was the child’s behaviors and
emotions (Mean = 2.68, SD = 1.04). The least listed stressful items were sight and sound
in the unit (Mean = 2.01, SD = .81) and behaviors of professional staff in the unit (Mean
= 1.49, SD = .73).
Table 21
Most Stressful Items Identified by Mothers and Fathers on the Parental Stressor Scale:
PICU (N=74)
Variable
Mean
SD
Parental role alteration
2.86
1.11
Child’s behaviors and emotions
2.68
1.04
Procedures
2.57
.87
Staff communication
2.48
1.19
Child’s appearance
2.01
.96
Sights and sounds
2.01
.81
Behaviors of professional staff
1.49
.73
121
When mothers’ and fathers’ scores are compared, parental role alteration is still
ranked as the most stressful PICU dimension both for mothers (M = 2.86, SD = 1.13) and
for fathers (Mean = 2.85, SD = 1.00). Parents ranked their child’s behaviors and emotions
differently. While mothers ranked this dimension as the second most stressful dimension
in the PICU (M = 1.77, SD = 1.05), fathers ranked this dimension as the 5th stressful
PICU dimension with a M = 2.01 and SD = .75. For fathers, the second important PICU
dimension was professional staff communication (M = 2.69, SD = 1.58) which came in
fourth in mothers’ rankings of stressors. The least stressful PICU dimension for mothers
was professional staff behaviors (M = 1.74, SD = .74). The least stressful dimension for
fathers was child’s appearance (M = 1.61, SD = .65).
Table 22
Mean Scores for PSS/PICU for Mothers (n = 66) and Fathers (n = 8)
Variable
Mothers
Fathers
Mean
SD
Mean
SD
Parental role alteration
2.86
1.13
2.85
1.00
Child’s behaviors and emotions
2.77
1.05
2.01
.75
Procedures
2.61
.88
2.18
.65
Staff communication
2.45
1.15
2.69
1.58
Child’s appearance
2.06
.98
1.61
.65
Sights and sounds
2.01
.02
2.04
.80
Behaviors of professional staff
1.74
.73
1.65
.82
122
Figure 3. Moderator effect of social support between intra-family strain and FAD general
functioning
123
Figure 4. Moderator effect of social support between stressful life events strain and FAD
general functioning
124
CHAPTER V
Discussion
This study was designed to further our understanding of the factors influencing
the adjustment of families of CHD children. The conceptual model for the study was
drawn from McCubbin and McCubbin’s (1996) Resiliency Model of Family Stress,
Adjustment, and Adaptation for the conceptualization of stress, coping, social support
and adjustment. The adjustment phase of the Resiliency Model was chosen to best
describe the family experience of the study population.
Having reviewed the literature, it was concluded that certain gaps in the
knowledge existed, and these are what this research attempts to fill. There has been no
nursing research that addresses the topic of stress, coping, social support of families of
children with CHD who are in the PICU after heart surgery. While having a child with
CHD has been shown to be a stressful event, little empirical research has been reported
that investigated all of these variables in one study. Data analysis involved descriptive
statistics, Pearson Product-Moment correlation coefficients, multiple regression and
hierarchical multiple regression models to examine moderating and mediating models.
This chapter presents a discussion and interpretations of the research findings. It
is organized around the major concepts investigated: stress, coping, social support and
adjustment. An evaluation of the study model is also provided. Study limitations as well
as implications for nursing practice and policy, as well as a summary and
recommendations for future research are presented.
125
Stress
Stress in this study was conceptualized as encompassing the stress arising from
intra-family strain, stressful family life events (McCubbin et al, 1996) and dimensions of
environmental stress in the PICU (Miles, Carter, Hennessey, Eberly & Riddle, 1989).
With regard to stress due to the accumulation of intra-family strain and stressful family
life events, both subscales had a significant relationship with both of the outcome
variables of family adjustment – the FAD General Family Functioning and FAD
Communication subscales. These results indicate that family stress that arises from intrafamily strain due to increases in conflicts between husband and wife, the number of tasks
that don’t get done, difficulty managing children, and conflict with in-laws or relatives
contributes to unhealthy general family functioning and poor communication and
interaction within the family.
In addition, increases in the number of stressful family life events a family has
experienced in the past year, such as a child’s become seriously ill or injured, a family
member having stopped working or lost his job, incidence of physical and/or
psychological aggression in the family, and a family member who has left home or
moved back home, leads to poor general family functioning and poor communication
within the family.
Because there is a paucity of studies investigating the relationship between stress
and adjustment in children with congenital heart disease, studies of other populations
were reviewed. Failla and Jones (1991) found that greater family stress, as measured by
FILE, was associated with lower levels of satisfaction with family adjustment for mothers
of children with developmental disabilities. Thompson, Gil, Gustafson, George, Keith,
126
Spock & Kinney (1993) reported that lower levels of maternal stress were associated with
good maternal adjustment in mothers of children with cystic fibrosis. Other studies have
also provided evidence that stress is related to family adjustment and adaptation (Leske &
Jiricka, 1998; Hill, 1993).
The results of this study indicated that family stress from the PICU environment
had no significant relationship with the outcome variable (adjustment as measured by
FAD general family functioning and FAD communication). The lack of a significant
relationship between family stress as measured by the PSS/PICU and family adjustment
is consistent with the results of other studies. Leske and Jiricka (1998) found that prior
stressors – as measured by the FILE – rather than the actual stressor event affect a
family’s experience in the PICU and may influence family adjustment. In addition, these
results may be attributed to differences in the structure of the samples. Samples in
previous studies included parents of children with a mixture of diagnoses, while the
current study limited the child’s diagnosis to CHD. A further reason why there is no
significant relationship with adjustment may be due to the small sample size included in
this study. The correlation between the PSS: PICU scale and adjustment in this study
approaching significance. Maybe with more participants, this correlation will be
significant, and the relationship will be more clear.
Of interest are differences in the degree of stress perceived by mothers and
fathers. In spite of the efforts exerted to recruit more fathers in the study to understand
their experience, only 8 fathers participated in the study. The findings of this study
revealed that both fathers and mothers reported that the overall PICU experience was
stressful for them, and mothers had higher mean scores than did fathers on all seven of
127
the PSS: PICU scales. The dimension of parental role alterations was reported the most
stressful among the PSS: PICU dimensions for both fathers and mothers. The top
stressors for parents under this dimension were “not being able to hold my child” and
“not taking care of my child by myself.” This finding is consistent with the results of a
number of other studies, namely Miles et al. (1985), Eberly et al. (1985), Miles et al.
(1984), Board (1994), Curley & Wallace (1992), and LaMontagne & Pawlak (1990), who
found that the dimension of parental role alterations has been the most stressful of the
PSS:PICU dimensions for parents. These results were interesting because, historically,
items in this dimension have been areas where limits have been set by hospitals in terms
of visitation hours and situations where parents have a sense of loss of control or
helplessness. But now, with the changes in philosophy of care that encourage staff to
include parents in caring for their children, parental role alteration was not expected to
still be the most stressful aspect of the PICU experience for families. This result
contradicts the results of Youngblut, Brooten & Kuluz (2005), who found that the top
stressor for parents of children in the PICU were sight and sounds dimensions.
Mothers and fathers differed on their rating of the second most stressful
dimension of the PICU. A child’s behaviors and emotions were ranked as the second
most stressful area for mothers of CHD children in this study. Mothers may be frightened
by some of the behaviors their child displays. The most stressful items in this dimension
for mothers were their child’s being afraid, acting or looking as if in pain, whining, or
crying. These results was congruent with the results of studies by Carter, et al. (1985),
Miles, et al. (1989), Youngblut, et al., (2005), and Johnson, Nelson, & Brunnquel (1988),
128
who found that the children’s behaviors and emotions sub-scale was an area of high stress
for mothers.
For fathers, the second most stressful area was staff communication. Fathers were
stressed by doctors’ and nurses’ ways of communicating such as explaining of things too
fast, using words they don’t understand, not telling them what is wrong with their child,
and telling them different and conflicting things about their child’s health condition. This
result contradicts the results of Board (2004), who find that staff communication was the
least stressful scoring dimension in their study of 15 fathers of children in the PICU. The
third ranked stressor was the same for fathers and mothers. Both fathers and mothers
ranked procedures done to the child as a stressful aspect of their PICU experience. Tubes
in my child were identified by 98% of the participants as the most stressful procedure
under this dimension. This result supports previous PICU research with fathers (Board,
2004).
The least stressful area for parents concerned the behaviors of the professional
staff. This subscale included items that describe the manner in which health care
professionals deal and interact with family members during their PICU stay. Miles (1979)
found that parental stress levels increase when the professional staff looks formal,
isolated and preoccupied. Congruent with findings reported by Heuer (1993), parents in
this study reported the staff behavior subscale as being non-stressful.
Differences in the top stressors between this study and previous studies may be
attributed to the differences in the structure of the samples. Samples in previous studies
included parents of children with a range of diagnoses, while the current study was
limited the child’s diagnosis of CHD. Knowing how parents’ reactions change by
129
diagnosis could provide greater direction for health care professionals in correctly
addressing parents’ stressors (Youngblut, et al. 2005).
Also, the current study’s results with respect to high levels of parental stress
related to the overall PICU experience and the parents’ inability to do things for their
children as well as their fear about their child’s future, and these are more obvious results
in parents of children who have children in the PICU, as opposed to parents of children in
other units of the hospital. Parents of children in the PICU are more stressed than parents
of children in general care units and non-hospitalized children. Berenbaum and Hatcher
(1992) reported that in comparison to parents in the general care unit, parents of children
in the PICU were significantly more depressed, anxious, confused and angry than parents
of children in the general pediatric and surgical units and parents of non-hospitalized
children. These results were also supported by Board (2004), who found that fathers of
children in the PICU are more stressed than fathers of children in the general care unit. In
a cross-sectional, comparative study, Youngblut and Lauzon (1995) compared 27
families whose child under 5 years old had been hospitalized in the PICU and general
care unit. Results showed that families of children in the PICU perceived greater severity
of their child’s illness and lower adaptability. Balluffi et al. (2004) investigated the
prevalence of both acute and posttraumatic stress disorders in parents whose children
were admitted to a PICU. The results indicated that most of the parents who participated
in the study met the criteria for posttraumatic stress disorder. This difference in stress
between parents of children in the PICU and parents of children in other hospital units
might not be surprising given the severity of the children’s conditions while in the PICU
and the treatments that are needed to care for these children. Children in the PICU may
130
have many invasive procedures and different medical devises that produce noise and
make the child look severely sick, and they may also experience pain from this
monitoring which increases the perception of stress for their parents (Board, 2004).
Coping
In this study, coping was measured by the Coping Health Inventory for Parents
(CHIP), which is used to assess parents’ appraisal of behaviors they are presently using to
manage family life when they have a seriously or chronically ill child (McCubbin et al,
1996, p. 432). The CHIP is composed of three coping patterns: Coping pattern I:
maintaining family integration, cooperation and an optimistic definition of the situation;
Coping pattern II: maintaining social support, self-esteem, and psychological stability;
and Coping pattern III: understanding the health care situation. The results of this study
indicate that the mean score for the total CHIP scale was 84.10, and scores ranged from 8
to 120. This was higher than that reported in the study of parents of children with cardiac
disease (M= 82.0) of McCubbin et al. (1996). The mean score for pattern I of the CHIP
was 43.76; for pattern II it was 23.38, and for pattern III, it was 16.50. Mean scores of
pattern II and III were lower than in the McCubbin et al. (1996) study (M = 42.85; M =
31.29). These results revealed that families in this study used pattern I for coping more
than the other two coping patterns. Ptacek (2003) mentioned that people use different
coping strategies in relation to the situation. In Savarsdottir and McCubbin’s (1996) study
of coping strategies among parents of children with congenital heart disease, parents
found it more useful to them to use coping pattern III, which contains behaviors directed
at understanding the health care situation and the parents’ relationships with health care
professionals and other parents as a way to cope with their child’s disease. Rodrigue et al.
131
(1997) examined coping patterns in 27 mothers of children undergoing heart, liver, bone
marrow, or kidney transplantation. Following transplantation, mothers reported that they
used coping strategies to maintain family integration (coping pattern I) and to understand
the child’s medical situation (coping pattern III).
The relationships between coping and other variables in the study were also
examined. There was a positive moderate correlation between family coping pattern I
(using family integration, cooperation and optimistic definition of the situation) and
social support. This indicates that as a family perceives more support, it enhances their
ability to uphold family integrity, cooperation and establish an optimistic attitude. Tak
and McCubbin’s (2002) study of the relationship between family coping and social
support in parents of children with congenital heart disease is consistent with the results
of this study.
There was a significant negative relationship between stressful family life events
and coping pattern II. The greater the accumulation of stressful life events, the less the
ability of parents to use social support, self-esteem and psychological stability as a coping
behavior. This result may be attributed to different factors; for example, due to the
accumulation of stressful events, families may have no time or opportunity to access
social support. Also, since the study was conducted during a child’s hospitalization in the
PICU, parents may need time to settle into the experience before they can assess the
support resources available. Chesler and Barbarin (1984) found that families may have
difficulty seeking help in the midst of crises. The event of cardiac surgery and the child’s
admission to the PICU could be considered a family crisis, and parents need time to
adjust to it before trying to seek social support. It is also possible that the parents did have
132
the time to access social support systems, but these resources become depleted over time.
This might be particularly true for parents who have older children with CHD. In
addition, these parents experience high levels of stress due to the accumulation of
stressful family life events. LaMontagne et al. (1992) found that highly anxious and
stressed parents sought less social support at the time of their child’s admission to the
PICU. Consistent with previous research, fewer emotional and cognitive supports were
found among high stress families and individuals (Endler & Parker, 1990; Lazarus,
1993).
The results of this study revealed a significant negative correlation between
parental stress that arises from the PICU environment as measured by PSS/PICU and the
parents’ abilities to use pattern ΙΙ coping (maintaining social support, self-esteem and
psychological stability). These parents are dealing with multiple different stressors at the
same time. They deal with stress arising from the accumulation of stressful family life
events and the intra-family strain that has happened in the past year and also with the
immediate stress arising from having a child in the PICU after cardiac surgery. Lepore &
Evans (1996) indicated that coping strategies directed toward one stressor are
exaggerated and affected by the extent to which a person is also coping with other
stressors. Individuals who must cope with many stressors at the same time are likely to
have significantly fewer coping resources with which to meet the challenges posed by
series of stressful events (Ptacek, 2003).
Social Support
One objective of this study was related to the testing of two models, the
moderating and mediating models of the effect of social support, in predicting adjustment
133
from stress. In this study, the moderator and mediator effects were tested as described by
Baron and Kenny (1986). The findings suggest that social support has a moderator effect
in relation to stress and family adjustment as measured by General family functioning
subscale of the FAD. A moderator is a variable that affects the direction and/or strength
of the relation between an independent or predictor variable and a dependent or criterion
variable (Baron and Kenny, 1986, p.1174). In such a model, social support acts as a
moderator, specifying the conditions under which the family will be adjusted. Cohen and
McKay (1984) mentioned that social support as a moderator served as a stress buffer by
influencing individuals’ interpretations of stressors and knowledge of coping strategies.
When families are exposed to high levels of stress, there will be interaction
between the high stress experienced by the family and social support. This result is
congruent with the results of several studies that support the moderator model of social
support between stress and different outcome variables, such as family adjustment and
adaptation, psychological distress, depression and marital adjustments (Cohen & Wills,
1985 ; Cohen, 1987; Dunn, Burbine, Bowers, Tantleff-Dunn, 2001; Ievers, et al., 1998;
Pengilly & Dowd, 2000; Pot, Deeg & Dyck, 2000; Roos,; Speechley & Noh, 1992).
In contrast, a mediating model assumes that social support functions as an
intervening variable between the stressor and outcome (Quittner, Glueckauf, & Jackson,
1990). Changes in the level of social support might in turn affect individuals’ adjustment
levels. Social support as a mediator does not specify the conditions under which stress
and adjustment are linked, but rather it outlines the processes through which stress affects
adjustment (Baron & Kenny, 1986). In the present study, the condition of the direct
relationship of stress to adjustment is becoming non significant was not met, so there is
134
no support for the mediating model of social support. This result may be because a
mediational hypothesis implies a causal order that is difficult to test with cross-sectional
data. The present results are consistent with the majority of studies that have tested and
failed to find evidence for the mediator role of social support (Tak, McCubbin, 2001).
Adjustment
In this study, family adjustment was the conceptual outcome variable. Family
adjustment was measured by using two subscales of the FAD: the General Family
Functioning subscale and the Communication subscale. The mean score of parents on the
general family functioning subscale was 1.85. The mean score of parents on the
communication subscale was 2.18. The cut-off score for this scale is 2.00 as described by
Miller et al (1985). This cut-off score is described as unhealthy by Miller et al (1985, p.
353). In this study 28 parents (37%) reported scores in the unhealthy range on the general
family functioning subscale, and 45 (63%) of the parents reported scores in the unhealthy
range on the communication subscale. This result is congruent with the results of Board
and Rayan-Wenger (2002), who examined the long-term effects of PICU hospitalization
on family functioning. Three groups of families were studied: those with children in a
PICU, those with children in a general care unit, and a comparison group of parents with
non-hospitalized children. The families in the study were followed-up for 6 months after
the children’s illness. The results showed that families who have children in the PICU
perceived themselves as more dysfunctional than families in the other groups.
The effects of the stress, coping, and social support on family adjustment were
tested by using multiple regression analysis. The result of regression analysis indicated
that of all the independent variables in the model, pattern I coping made the most
135
significant contribution to predicting general family functioning. Previous research has
yielded equivocal results with respect to the association between coping and adjustment.
As in the literature on stress, differences in conceptualizations and measurement tools
make comparisons among studies challenging. While some studies have found that
coping was a predictor of adjustment (Frey et al., 1989; Reider ,1989 ; Kosciulek ,1993 &
1994; and Lin, 1998), other studies found no association (Hill ,1993; Phipps & Droter
,1990).
A stressful family life event was the strongest predictor of the communication
subscale. These results corroborate the findings of Kaul (1995), who found that the
overall number of negative stressors a mother of a child with congenital heart disease
experienced during the past year proved to be a significant predictor of maternal
adjustment among CHD children.
Social support did not predict family adjustment. These findings were
unanticipated as there is evidence in the literature (Lesk & Jiricka 1998; Musil, et al
2006; Uzark et al. 1992) to show that social support is an important factor in adjustment
and family functioning. These results may be attributed to the sample size. The
correlation between social support and adjustment in this study approaching significance.
Maybe with more participants, this correlation will be significant, and the relationship
will be more clear. A further reason for the differences may be related to sample
characteristics and measurement. The previous studies used families with mixed
diagnoses and different measures for social support. One study, Kaul (1995), used a
sample of CHD parents and used the same measure of social support used in this study
136
and found that social support as measured by ISSB does not predict adaptation in mothers
of CHD children.
The effects of stress, coping, and social support on family adjustment after
controlling for parent’s gender, age, child’s age were examined by hierarchical multiple
regression analysis. Although none of the independent variables alone was a significant
predictor of family adjustment, all together, the variables had a significant incremental
variance in adjustment. Adding more control variables to the model explained more
variance in adjustment. Parents who have children with no previous heart surgery, who
were married, and who have a male child adjust better to their child’s disease.
Findings of the Study and the Resiliency Model of Stress, Adjustment, and Adaptation
The framework used for this study was based on the adjustment phase of the
Resiliency Model of Stress, Adjustment, and Adaptation (McCubbin et al., 1996). In this
model, the accumulation of stressors, coping, and resistance resources (social support) all
impact family adjustment. Together, the variables in the model accounted for 28% of the
variance in family adjustment. Coping was the predictor that made the most significant
prediction of general family adjustment while negative family life events made a
significant prediction of the communication subscale. These results support the premises
of McCubbin et al. (1996), which suggest that the pile-up of stress arising from the
accumulation of stressful family life events and coping are very important factors in the
adjustment of parents who have chronically ill/or critically ill children.
137
Limitations
A non-probability convenience sample (n= 74) was used, consisting of parents of
CHD children in the PICU after heart surgery. The use of a convenience sample may
weaken the generalizability of the study results since a convenience sample reflects a
specific, targeted group, as opposed to a random sample that may potentially reflect the
general population of parents of children with CHD. Also, the sample size was relatively
small (n= 74). This small sample size may have obscured significant effects or
relationships that otherwise may have occurred in a larger sample. A larger sample would
have made the study stronger. In addition, the use of a cross-sectional design was also a
limitation. Relationships such as causal relationships between the study concepts, the
moderating and mediating effects of social support on the relationship between stress and
adjustment might have been better explained by a longitudinal study. However, despite
these limitations, the findings of the current study have important implications for nurses
and other professionals who work with families of CHD children.
Implications of the Study for Practice
The dynamics of family stress, coping and adjustment must be understood in
order to plan effective nursing interventions. Intervention studies should be developed
based on a solid foundation of knowledge. Exploring family’s adjustment during a child’s
PICU hospitalization will provide researchers with a more substantive basis for
developing intervention studies for the period immediately following children’s surgery.
Nursing interventions aimed at facilitating coping and minimizing the negative impact of
this stressor may have a positive influence on the family’s ability to adjust to the event
138
(Pinelli, 1997). Through early detection of parents who may be at risk for relationship
deterioration or family disorganization, health professionals can intervene with
preventive strategies. The role of nursing can be viewed as assisting families during the
process of adjustment (Pinelli, 1997). The results of this study show that parental role
alteration was one of the most important dimensions for both fathers and mothers when
their child was in the PICU. Nurses need to understand that parental role is very
important to parents. Nurses should encourage parents to provide nursing care and
encourage them to hold their child when possible. This may help parents feel more in
control of other aspects of the critical care situation and thus be better able to help their
child in crisis. As noted, coping accounted for the largest portion of the variance in
family adjustment. Such a finding is important and has implications for practice. In
practice, a comprehensive understanding of how positive family coping strategies
influence family adjustment is needed. Such understanding should also include
examining challenges that occur in life due to life events as well as family coping and
adjustment differences.
Understanding the nature of parents’ stress, coping, social support, and the effect
of these variables on the parents’ adjustment allows for the development and
implementation of specific nursing interventions for this special population. Nurses can
play a vital role as a resource that helps parents manage and cope with their crisis
situation because providing support and guidance to families in their adjustment to their
child’s illness is an important component of health promotion (Kruger, 1992). In
addition, scientific knowledge gained about stress, coping, social support and adjustment
139
will form a relevant and substantive base for nursing practice as well as for further theory
development.
Theory Development
In nursing, stress, coping, social support and adjustment are concepts relevant to
the development of a body of nursing knowledge. Roy (1984) described nursing’s
perspective as focused on those “processes by which persons positively affect their health
status” (p. 266). Stress theory was the predominant theoretical perspective underlying the
research on parents and family responses. This research is based on McCubbin and
McCubbin’s (1996) resiliency model, and testing this model with this population
provides support for the model’s validity in dealing with this population, and this can
expand the usefulness of the model.
Implications of the Study for Future Research
Based on the findings of this study, several recommendations for future research
are offered. Data were collected at only one point in time. It is possible that responses
may change over time. Longitudinal research could further clarify the concepts examined
in this study by revealing cause/effect relationships. Plus, longitudinal research could
identify some of the markers of good or poor adjustment that persist over time.
Future research could also be improved by measuring some of the variables in a
different way. All of the measures employed in the current study were self-reported and
hence depended upon families’ perceptions. For future research, a triangulation study
using both the instruments in this study and an interview to elicit qualitative data might
be productive.
140
One of the main purposes of current and future research in this field is to develop
interventions which can assist families who are raising a child with congenital heart
disease. Results of the present study suggest certain types of interventions that may
improve family adjustment. For example, life events stress was shown to have a
significant relationship to family adjustment. This suggests that it might be useful to
teach families stress management techniques to help deal with general life stress. One
technique that might be useful and can be applied by the researcher in future research is
called the nursing mutual participation model of care (NMPMC) developed by Curley
and Wallace (1992). The NMPMC is an intervention aimed at facilitating the parents’
ability to reduce their own stress; Curley and Wallace (1992) also used it in the PICU, but
their population consisted of parents of children with different diagnoses.
The sample in this study was drawn from two sites in the United States. It is
unknown how these families differ from others throughout the United States or the world.
This study could be replicated with a larger group of families from many sites, or a
comparative study with Egypt or any other country could be performed. Random
sampling of families would also aid in the generalizability of the results. Replicating the
study in Egypt with a larger, random, more diverse sample, and comparing the two
studies will give more knowledge regarding the differences in conceptualizing these
important concepts across countries, and it would provide a basis for intervention studies.
Additionally, in spite of trying to include more fathers in this study, there were only 8
fathers included. The inclusion of more fathers is also a prime topic for future research.
141
Conclusion
In sum, this research extends our understanding of parenting stress, coping, social
support and adjustment in several ways. In addition to the emphasis on the importance of
assessing different kinds of stressors – and not focusing only on the current stressors
families are experiencing – the findings underscore roles of coping and social support in
the relationship between stress and adjustment. More research identifying the stressors
experienced by families of CHD children needs to be done. A comprehensive
understanding of how positive family coping strategies influence family adjustment is
crucial. Such understanding should also include examining challenges occurring in life
due to life events as will as family coping and adjustment differences between fathers and
mothers.
142
Summary
The purpose of this research was to explore the relationship between family and
child demographic characteristics, stress, coping, social support and adjustment in
families who have a child in the PICU after heart surgery. Seventy-four parents (8
fathers, 66 mothers) participated in the study. McCubbin and McCubbin’s Resiliency
Model of Family Stress, Adjustment and Adaptation provided an organizing framework
for the study.
Findings of this study indicate that stress due to the accumulation of intra-family
strain and stressful family life events contributes to perceptions of poorer family
functioning and poor communication and interaction within the family. Both fathers and
mothers reported that the overall PICU experience was stressful for them and rated their
parental roles and their child’s behaviors and emotions as the most stressful dimensions
of their PICU experience. Parents are frightened by some of the behaviors their child
displays, such as being afraid, acting or looking as if in pain, and whining, or crying. The
least stressful area in the PICU for parents concerned the behaviors of the professional
staff.
The participants in this study used the three coping patterns of CHIP in different
degrees to cope with their situation. Coping pattern Ι, which involves family integration,
cooperation and having an optimistic definition of the situation, was used more often by
the parents as compared to the other two patterns of coping (pattern ΙΙ coping:
maintaining social support, self-esteem and psychological stability; and pattern ΙΙΙ:
understanding the health care situation through communication). Also, the findings
indicated that the greater the accumulation of stressful family life events and the greater
143
the stress from the PICU environment, the less the ability of parents to use social support,
self-esteem and psychological stability as coping behaviors.
In this study, family adjustment was the conceptual outcome variable. Family
adjustment was measured by using two subscales of the FAD: the General Family
Functioning subscale and the Communication subscale. In this study, 28 parents (37%)
reported scores in the unhealthy range on the general family functioning subscale, and 45
(63%) of the parents reported scores in the unhealthy range on the communication
subscale. The effects of stress, coping, and social support on family adjustment were
tested using multiple regression analysis. The result of the regression analysis indicated
that of all the independent variables in the model, pattern I coping made the most
significant contribution to predicting general family functioning. Adding more control
variables to the model explained more variance in adjustment. Families who have
children with previous heart surgery, who were married, and who have a male child
adjust better to their child’s disease. Although social support did not predict family
adjustment in this study, it worked as a moderator variable between intra-family strain,
stressful family life events and FAD general family functioning.
144
Appendix A
Family Inventory of Life events and Change (FILE)
Directions:
Over their life cycle, all families experience many changes as a result of normal
growth and development of members due to external circumstances. The following
list of family changes can happen in a family at any time. Because family members
are connected to each other in some way, a life change of any one member affects all
the other persons in the family to some degree. Family refers to those people you
consider to be “family”.
Please read each family life change and decide whether it happened to any member of
your family including you during the last 12 months.
Please circle the number 1 for “Yes” or 0 for “No” for each statement
yes
no
1. A family member gave birth to or adopted a child
1
0
2. Increase in conflict between husband and wife
1
0
3. Increase in arguments between parent(s) and child(ren)
1
0
4. Increase in conflict among children in the family
1
0
5. Increase difficulty managing child(ren)
1
0
6. Increase in number of tasks/chores that don’t get done
1
0
7. Increase in conflict with in-laws or relatives
1
0
8. Increased disagreement about a family member’s friend(s) or activities
1
0
8. A family member appeared to have emotional problems
1
0
10. A family member appeared to depend on alcohol or drugs
1
0
11. Family member remarried and/or become divorced
1
0
12. Married son or daughter was separated or divorced
1
0
13. Difficulty with child(ren)’s school work/homework or grades
1
0
14. Difficulty coordinating child(ren)’s activities (sports, clubs, etc. )
1
0
15. Increased strain on family “money” for medical expenses, clothes
1
0
1
0
food, education, etc
16. A family member dropped out of school or was suspended
145
yes
no
1
0
1
0
19. A family member started or returned to work
1
0
20. A family member changed to a new job/career or was given more
1
0
21. Increased difficulty with people at work or dissatisfaction with job/career
1
0
22. Family moved to a new home/apartment
1
0
23. A family member left home or moved back home
1
0
24. A family member ran away from home
1
0
25. Teenager become pregnant
1
0
26. Child become seriously ill or injured
1
0
27. Other family member, relative, or close friend become seriously
1
0
1
0
1
0
30. Child died
1
0
31. Other family member, relative or close friend died
1
0
32. Incidents of physical and/or psychological aggression
1
0
33. A member went to jail or juvenile detention.
1
0
17. Increased financial debts due to use of credit cards/loans/more
expenses
18. A family member stopped working, lost or quit a job (e.g., retired, laidoff, etc.)
responsibilities at work
ill or injured
28. A family member or relative became physically disabled, chronically
ill or was placed in an institution/nursing home
29. Increased difficulty in providing care to a disabled or chronically
ill family member
146
Appendix B
Parental Stressor Scale: PICU
Directions:
Of great concern to nurses and others who work in a Pediatric Intensive care Unit (PICU)
is the effect of this environment and experience on parents. This questionnaire contains a
number of items that may be stressful to parents while their child in PICU. I am
interested in your view of these stressors. By stressful, I mean an experience that
caused you to feel anxious, upset, or tense. On the questionnaire, you are asked to
circle the number that best expresses how stressful each item was for you.
0 = Not experienced
3 = Moderately stressful
1 = Not stressful
4 = Very stressful
2 = Minimally stressful
5 = Extremely stressful
Below is a list of items that might describe your Child’s Appearance. Using the
following rating scale, circle the number that best express how stressful these things have
been for you
Items
1. Puffiness of my
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
child
2.Color changes in
my child (Pale, blue
or yellow)
3. Child appearing
cold
147
Below is a list of Sights and Sounds in an intensive care unit. Circle the number that best
express how stressful each of these items has been for you
Items
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
1. Seeing the heart on
the monitors
2. The sound of
monitors and
equipment
3. The other sick
children in the room
4. The sudden sounds
of monitor alarms
Below is a list of Procedures that may have been done to your child. Circle the number
that best express how stressful these procedures have been for you
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
1. Tubes in my child
0
1
2
3
4
5
2. Suctioning
0
1
2
3
4
5
3. Putting needles in
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
Items
my child for fluids,
procedures or tests
4. Making my child
cough and deep
breath/pounding and
clapping on my
child’s chest
5. Injections/ shots
148
Items
6. Bruises, cuts,
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
0
1
2
3
4
5
incisions on my child
Below is a list of items that relate to how Professional staff (doctors and nurses) may
Communicate with you about your child’s illness. Please indicate the stress level of these
items.
Items
1. Explaining things
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
too fast
2. Using words I
don’t understand
3. Telling me
different (conflicting)
things about my
child’s condition
4. Not telling me
what is definitely
wrong with my child
5. Not talking to me
enough
149
Below is a list of Behaviors and emotional responses that your child may have exhibited
while in the intensive care unit. Using the same scale as above, how stressful were things
for you?
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
1. Confusion
0
1
2
3
4
5
2. Rebellious or
0
1
2
3
4
5
3. Crying or whining
0
1
2
3
4
5
4. Demanding
0
1
2
3
4
5
5. Acting or looking
0
1
2
3
4
5
6. Restlessness
0
1
2
3
4
5
7. Inability to talk or
0
1
2
3
4
5
8. Fright
0
1
2
3
4
5
9. Anger
0
1
2
3
4
5
10. Sadness or
0
1
2
3
4
5
Items
uncooperative
behavior
as if in pain
cry
depression
150
Below is a list of Behaviors of the professional staff (doctors and nurses) that you may
have observed. Circle the number that best express how stressful these items have been
for you.
Items
1. Joking, laughing,
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
or talking loudly
2. Not talking to me
enough
3. Too many
different
people(doctors,
nurses, staff) talking
to me
4. Not telling me
names or who they
are
These items related to Parental Roles. How stressful have the following been for you?
Items
1. Not taking care of
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
0
1
2
3
4
5
0
1
2
3
4
5
0
1
2
3
4
5
my child my self
2. Not being able to
visit my child when I
wanted
3. Not being able to
be with my crying
child
151
Items
4. Not being able to
Not
Not
Minimally
Moderately
Very
Extremely
Experienced
Stressful
Stressful
Stressful
Stressful
Stressful
0
1
2
3
4
5
0
1
2
3
4
5
hold my child
5. Using the same
rating scale, how
stressful, in general,
has the total intensive
care unit experience
been for you?
152
Appendix C
Coping Health Inventory for Parents (CHIP)
Directions:
To complete this inventory you are asked to read the list of “coping Behaviors” below,
one at a time. For each coping behavior you used, please indicate by circling a number
how helpful this belief or action is for you in managing family life right now with your
child who has undergone cardiac surgery.
0 = Not helpful
1 = Minimally helpful
2 = Moderately helpful
3= Extremely helpful
For each Coping Behavior you Did Not use, please record your “Reason”. Please
Record this by checking □ one of the reasons:
Chose not to use it
Not Possible
1. Trying to maintain
0
1
Extremely Helpful
Moderately helpful
Minimally helpful
Coping Behaviors
□
Not helpfuL
□
2
I don’t cope this
Way because
Chose
Not
not to possible
3
□
□
□
□
□
□
□
□
family stability.
2. Engaging in
relationships and
0
1
2
3
0
1
2
3
friendships which help
me to feel important and
appreciated.
3. Trusting my spouse (or
former spouse) to help
Extremely Helpful
Moderately helpful
Minimally helpful
Coping Behaviors
Not helpfuL
153
I don’t cope this
Way because
Chose
Not
not to possible
□
□
□
□
□
□
support me and my
child(ren).
4. Sleeping.
0
1
2
3
5. Talking with the
medical staff(nurses,
0
1
2
3
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
social worker, etc.) when
we visit the medical
center.
6. Believing that my
child will get better
7. Working, outside
employment
8. Showing that I am
strong.
9. Purchasing gifts for
myself and/or other
family members.
10. Talking with other
individual/parents in my
Extremely Helpful
Moderately helpful
Minimally helpful
Coping Behaviors
Not helpfuL
154
I don’t cope this
Way because
Chose
Not
not to possible
□
□
situation.
0
1
2
3
□
□
12. Eating
0
1
2
3
□
□
13. Getting away myself
0
1
2
3
□
□
14. Getting other
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
11. Taking good care of
all the child’s special
needs at home.
members of the family to
help with chores and
tasks at home
15. Believing in God.
16. Talking with Doctor
about my concerns about
my child(ren) with the
medical condition.
17. Believing that the
medical center/hospital
has my family’s best
Extremely Helpful
Moderately helpful
Minimally helpful
Coping Behaviors
Not helpfuL
155
I don’t cope this
Way because
Chose
Not
not to possible
□
□
interest in mind.
18. Building a closer
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
relationship with people.
19. Develop my self as a
person.
20. Talking with other
parents in the same type
of situation and learning
about their experiences.
21. Doing things together
as a family (involving all
members of the family).
22. Investing time and
energy in my job.
23. Believing that my
child is getting the best
medical care possible.
24. Entertaining friends
in our home.
25. Reading about how
Extremely Helpful
Moderately helpful
Minimally helpful
Coping Behaviors
Not helpfuL
156
I don’t cope this
Way because
Chose
Not
not to possible
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
other persons in my
situation handle things.
26. Doing things with
family relatives.
27. Becoming more self
reliant and dependent.
28. Telling myself that I
have many things I
should be thankful for.
29. Concentrating on
hobbies (art, music,
jogging, etc.)
30. Explaining our family
situation to friend and
neighbors so they will
understand us.
31. Allowing myself to
get angry.
32. Encouraging
Extremely Helpful
Moderately helpful
Minimally helpful
Coping Behaviors
Not helpfuL
157
I don’t cope this
Way because
Chose
Not
not to possible
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
child(ren) with medical
condition to be more
independent.
33. Keeping myself in
shape and well groomed.
34. Involvement in social
activities (parties, etc.)
with friends.
35. Going out with my
spouse on a regular basis
36. Investing myself in
my child(ren).
37. Being sure prescribed
medical treatments for
child(ren) are carried out
at home on a daily basis
38. Building a closer
relationship with my
Extremely Helpful
Moderately helpful
Minimally helpful
Coping Behaviors
Not helpfuL
158
I don’t cope this
Way because
Chose
Not
not to possible
□
□
spouse.
39. Talking to someone
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
0
1
2
3
□
□
(not professional
counselor/doctor) about
how I feel.
40. Reading more about
the medical problem
which concerns me.
41. Talking over personal
feelings and concerns
with spouse.
42. Being able to get
away from the home care
tasks and responsibilities
for some relief.
43. Having my child with
the medical condition
seen at the clinic/hospital
on a regular basis.
44. Believing that things
Extremely Helpful
Moderately helpful
Minimally helpful
Coping Behaviors
Not helpfuL
159
I don’t cope this
Way because
Chose
Not
not to possible
□
□
0
1
2
3
□
□
0
1
2
3
□
□
will always work out.
45. Doing things with my
children.
160
Appendix D
Inventory of Social Supportive Behavior
Directions:
This is a measure of specific supportive behaviors. Please rate the frequency with which
each of the following items has occurred during the preceding month, across all your
relationships, in general.
Please respond using the following 5-point scale
1 = Not at all
2 = Once or twice
3 = Once a week.
4= Several times a week
4 = Every day
2
3
4
5
1
2
3
4
5
1
2
3
4
5
a week
Every day
Once A week
1
Several times
Once Or twice
1. Looked after a family member while you are
Not at all
In the past month, how often has somebody helped you in the following way:
away
2. Was right with you (physically) in a stressful
situation
3. Told you what she/he did in a situation that
was similar to yours.
Once A week
2
3
4
5
1
2
3
4
5
1
2
3
4
5
1
2
3
4
5
1
2
3
4
5
1
2
3
4
5
10. Provided you with some transportation
1
2
3
4
5
11. Listened to you talk about your personal
1
2
3
4
5
12. Loaned or gave you something(a physical
1
2
3
4
5
Agreed that what you wanted to do was right.
1
2
3
4
5
14. Said things that made your situation clear
1
2
3
4
5
a week
Every day
Once Or twice
1
4. Did something together to help you get your
Several times
Not at all
161
mind off things
5. Went with you to someone who could take
action.
6. Expressed esteem or respect for a
competency or personal quality of yours.
7. Gave you some information on how to do
something
8. Comforted you by showing you some
physical affection
9. Gave you some information to help you
understand a situation you were in
object or money) that needed
and easier to understand.
Once A week
2
3
4
5
1
2
3
4
5
1
2
3
4
5
18. Told you who you should see for assistance
1
2
3
4
5
19. Told you what to expect in a situation that
1
2
3
4
5
20. Taught you how to do something.
1
2
3
4
5
21. Pitched in to help you do something that
1
2
3
4
5
a week
Every day
Once Or twice
1
15. Told you how she/he felt in a situation that
Several times
Not at all
162
was similar to yours.
16. let you know that he/she will always be
around if you need assistance.
17. Expressed interest and concern in your well
being
was about to happen
needed to be done
163
Appendix E
Family Assessment Device (FAD)
Directions:
This questionnaire is about families. I am interested in learning more about how your
family functions. Below are statements about families. Think about your family and
decide how much you agree or disagree with the statements. Please circle the number that
best describes how much you agree or disagree with the statement as it applies to your
family.
1= Strongly agree
2= Agree
3= Disagree
4= Strongly disagree
Strongly Agree Disagree
agree
1. Planning family activities is difficult
Strongly
disagree
1
2
3
4
1
2
3
4
1
2
3
4
1
2
3
4
because we misunderstand each other
2. When someone is upset the others
know why.
3. In times of crisis we can turn to each
other for support
4. We cannot talk to each other about the
sadness we feel
164
Strongly Agree Disagree
agree
5. You can’t tell how a person is feeling
Strongly
disagree
1
2
3
4
1
2
3
4
1
2
3
4
1
2
3
4
9. We can express feelings to each other.
1
2
3
4
10. We talk to people directly rather than
1
2
3
4
1
2
3
4
12. We often don’t say what we mean
1
2
3
4
13. Making decisions is a problem for our
1
2
3
4
14. We are frank with each other
1
2
3
4
15. We are able to make decisions about
1
2
3
4
1
2
3
4
from what they are saying
6. Individuals are accepted for what they
are
7. People come right out and say things
instead of hinting at them
8. We avoid discussing our fears and
concerns
through go-between
11. There are lots of bad feelings in the
family
family
how to solve problems
16. We don’t get along well together
165
Strongly Agree Disagree
agree
Strongly
disagree
18. We confide in each other
1
2
3
4
19. When we don’t like what someone has
1
2
3
4
1
2
3
4
done, we tell them
20. We don’t talk to each other when we
are angry
166
Appendix F
Family Demographic Form
Directions: please complete each of the following items about yourself
1- Your date of birth _____________________ mm/d/y
2- Your gender (please check one)
_______Male
_______Female
3-Your relationship to the child
(1) Biological parent
(3) Guardian
(2) Adopted parent
(4) Other (Please specify: __________)
4-Racial/ethnic background
(1) African American
(4) European American (White)
(2) American Indian
(5) Hispanic
(3) Asian American
(6) Others (Please specify: _________)
5- What is your marital status?
(1) Married
(4) Widowed
(2) Not married
(5) Separated
(3) Not married, living with partner
(6) Divorced
5- Your religion:
(1) Christian
(4) No preference
(2) Jewish
(5) Other (Please specify:______)
(3) Moslem
6. Current employment status:
Mother
Father
(1) Employed full time
(1) Employed full time
(2) Employed part time
(2) Employed part time
(3) Unemployed
(3) Unemployed
(4) Retired
(4) Retired
(5) Other (Please specify __________)
(5) Other (Please specify_________)
167
7. Level of education
(1) Less than 7 years of school (did not complete 7th grade)
(2) Junior high school (completed 7th through 9th grade)
(3) Some high school (completed 10th or 11th grade)
(4) Completed high school
(5) Some college (4-year)
(6) Completed college (4-year)
(7) Completed graduate school
(8) Other (Please specify ___________________)
8. Total approximate annual family income from all sources
(1) Less $ 10,000
(5) $75,001-$100,000
(2) $ 10,001- 30.000
(6) Others (please
specify:$_________)
(3) $30,001- 50.000
(4) $50,001- 75.000
9.Your city and state of residence
________________________________________________
_____________________________________________________________________
Items 10-15 pertain to your child’s current surgery
10. How old is your child?
Age _______
Date of Birth _______ mm/d/y
11. Gender (Please Check)
______Male
______Female
12. Your child age when he first diagnosed with congenital heart disease ___________
13. Type of heart problem
14. Type (name) of heart surgery
15. What medical facility referred your child her
________________________________________________________________________
168
Items 16-19 pertain to your child’s past surgeries
16. Has your child had any prior heart surgery?
_______ Yes
_______ No
17. If yes, how many surgeries has he/she had?
(a) Number of surgeries
(b) Date of surgeries
(c) Child’s age at time of surgery
(d) Types of surgeries
18. Do you have other children?
________ Yes,
If yes, how many ________
________ No
19. Have any of your other children needed heart surgery?
_________Yes
_________No
169
Appendix G
The Cleveland Clinic Foundation
Consent to Participate in a Research Study
Study title: Stress, Coping, Social support and adjustment among families of
children in PICU after heart surgery
________________________________________________________________________
You are being asked to participate in a research study. The purpose of this document is
to provide you with information to consider in deciding whether to participate in this
research study. Consent must be based on an understanding of the nature and risks of the
treatment, device or procedure. Please ask questions if there is anything you do not
understand. Your participation is voluntary and will have no effect on the quality of your
medical care if you choose not to participate.
1. Information on the Research: The purpose of this research study is to gain a greater
understanding about stresses of families with children in the pediatric intensive care unit
after heart surgery. This research is being conducted by Hala Saied, R.N., M.S.N., who is
a doctoral candidate at Case Western Reserve University at Frances Payne Bolton School
of School of Nursing: the study is her dissertation research. As a participant in this study,
you will be asked to fill out a questionnaire 24 to 48 hours after your child’s admission to
the pediatric intensive care unit that will take 20 to 30 minutes of your time. You can fill
out the questionnaire at a time that is good for you and you will be instructed to place the
completed questionnaire in the sealed envelope and deposit it in the designated box at the
PICU nurse’s station.
Also, the investigator will collect data from your child’s hospital record about type of
current heart surgery, whether transferred from another hospital and previous surgeries.
Your participation in this study will consist of filling out the questionnaires and will last
up to 20 to 30 minutes.
2. Risks and Discomforts: There might be a minimal risk in participating in this study.
The study questionnaires may cause emotional discomfort. You may skip questions or
whole questionnaires or discontinue participation in the study. You are also able to
contact the research investigator Ms. Hala Saied at 216-548-0281, Dr. Musil at 216-3688775 and/or Dr. Stephen Davis at 216-444-2060.
3. Benefits: There are no direct benefits for participating in this study. However, this
information will help health care professionals to identify better methods for helping
other families who are experiencing these types of events.
4. Alternatives: The alternative is not to participate in this study. Whether you choose to
participate or not will in no way affect you/your child's medical care at Cleveland Clinic
Foundation or at the Pediatric Intensive care Unit.
170
5. Privacy and Confidentiality : In order to maintain confidentiality there will be codes
put on all the questionnaires used in this study and there will only be one master list of
codes with subject identity. This list will be located in a locked cabinet. Knowledge that
is gained from this study may be published in scientific journals, but will not identify any
names or identity. The medical and research information recorded about you will be used
within the Cleveland Clinic and/or disclosed outside the Cleveland Clinic as part of this
research. Some of the tests and procedures done solely for this research study also may
be placed in your medical record so your other doctors know you are in this study. Upon
completion of the study, you may have access to the research information that is
contained in the medical chart. Your access to research information about you will be
limited while the study is in progress. Preventing this access during the study keeps the
knowledge of study results from affecting the reliability of the study. This information
will be available should an emergency arise that would require your treating physician to
know this information to treat you best.
Your research information may be disclosed to the research committee members, the
research study Sponsor and its agents, the Cleveland Clinic research review staff, the
U.S. Food and Drug Administration, and other outside collaborators or laboratories that
are participating in this study, if any, that are listed as follows: NONE. The Cleveland
Clinic also may use and disclose this information for treatment and payment reasons.
The Cleveland Clinic must comply with legal requirements that mandate disclosure in
unusual situations. Otherwise, the information recorded about you as part of this research
will be maintained in a confidential manner. It is possible that information disclosed
about you outside the Cleveland Clinic could be re-disclosed and no longer protected by
federal privacy laws.
Your research information may be used and disclosed indefinitely, but you may stop
these uses and disclosures at any time by writing to Hala Saied at Frances Payne Bollton
School of Nursing. If you do so, any information previously disclosed cannot be
withdrawn. The Cleveland Clinic will not use or disclose the information collected in
this study for another research purpose without your written permission, unless the
Cleveland Clinic Institutional Review Board gives permission after ensuring that
appropriate privacy safeguards are in place. The Institutional Review Board is a
committee whose job is to protect the safety and privacy of research subjects.
If you choose not to sign this consent form, you will not be permitted to participate in this
research study.”
6. Research-Related Injuries: If physical injury occurs due to your involvement in this
research, medical treatment is available, but your medical insurance must pay the cost of
treatment. Such medical treatments that are not covered by your medical insurance
(insert shall or shall not) be paid by (insert the sponsor's name and explain this
arrangement). Compensation for lost wages and /or direct or indirect losses are not
available. The Cleveland Clinic will not voluntarily provide compensation for medical
expenses or any other compensation for research-related injuries. Further information
171
about research-related injuries is available by contacting the Institutional Review Board
at (216) 444-2924.
7. Costs: There are no costs to you or to your insurance company for your participation
in this study. The Cleveland Clinic will not pay for the costs of procedures, tests, visits
and hospitalizations in connection with this research.
8. Questions: If you have any questions about the research or develop a research-related
problem, you should contact Hala Saied at 440-995-1909, Dr Musil at 216-368-8775 and/
or Dr. Stephen Davis at 216-444-2060 at any time. If you have questions about your
rights as a research subject, you should contact the Institutional Review Board at (216)
444-2924".
9. Voluntary Participation: Your participation in this study is completely voluntary.
You can choose not to participate, or stop participating at any time without fear of
penalty or loss of medical care. You will be informed in a timely manner if any
information becomes available during the course of the research that may affect your
willingness to continue participating in the study.
10. Signature
I have read the above information and have had all my questions answered to my
satisfaction. I understand that my participation is voluntary and that I may stop my
participation in the study at any time. Signing this form does not waive any of my legal
rights. A copy of this consent will be provided to you. By signing below, I agree to take
part in this research study.
Subject Signature:
______________________________________________________Date: ___________
Witness/Person Obtaining Consent Signature:
________________________________Date: ___________
172
Appendix H
UNIVERSITY HOSPITALS OF CLEVELAND
CONSENT FOR INVESTIGATIONAL STUDIES
Project Title: Stress, Coping, Social support and adjustment among families of children
in PICU after heart surgery
Principal Investigator: Hala Saied , RN, PhD Candidate, CWRU
Purpose:
You are being asked to participate in this study because you are a parent of a child in the
Pediatric Intensive Care Unit (PICU) who has had heart surgery. The purpose of the
study is to learn more about how families manage the experience of having a child in the
PICU after heart surgery.
Description of Study:
As a participant in this study, you will be asked to fill out a questionnaire within 2-4 days
after your child’s admission to the PICU. The questionnaire will take 20 to 30 minutes of
your time. The questionnaire will ask questions about your PICU experience, and how
you cope and adjust to this experience. You will also be asked to complete a brief
questionnaire about you and your child’s general background information. You may
complete the questionnaire at the time it is given to you or at a later time that is more
convenient for you. The principal investigator will be available to answer any questions
you may have regarding the questionnaire. The completed questionnaire should be
sealed in the envelope provided and dropped into a designated box at the PICU nurses’
station. Also, the investigator will be collecting information from your child’s hospital
record about the type of current heart surgery, whether transferred from another hospital
and previous surgeries.
Risks or Discomforts:
There is no risk to you from participating in this study. If you feel any emotional
discomfort from answering any of the items on the questionnaires, you may decide not to
answer that question. You may also decide not to finish the questionnaires.
173
Benefits:
There are no direct benefits to you for participating in this study. However, this
information will help health care professionals to identify better methods for helping
other families who are experiencing these types of events. Also, as a token of
appreciation, you will receive a
$5.00 meal voucher to be used at the University Hospitals cafeteria.
Financial Information:
There is no cost to you or your insurance company for participation in this study. You
will not be compensated for your participation in this study.
Confidentiality:
In order to maintain confidentiality code numbers rather than names will be used on all
the questionnaires in this study. Your name or your child’s name will not be used to
identify any of the data. One master list of codes and subject names will be located in a
locked cabinet and only the principal investigator, Ms. Saied, and her research advisor,
Dr. Musil, will have an access to this information. Results of this study may be published
in scientific journals, your identity will remain confidential. Only group data will be
reported.
Summary of your rights as a participant in a research study
Your participation in this research study is voluntary. Refusing to participate will not
alter your usual health care or involve any penalty or loss of benefits to which you are
otherwise entitled. If you decide to join the study, you may withdraw at any time and for
any reason without penalty or loss of benefits. If information generated from this study is
published or presented, your identity will not be revealed. In the event new information
becomes available that may affect the risks or benefits associated with this study or your
willingness to participate in it, you will be notified so that you can decide whether or not
to continue participating. If you experience physical injury or illness as a result of
participating in this research study, medical care is available at UHC or elsewhere;
however, University Hospitals of Cleveland will not provide free care or compensation
for lost wages.
Disclosure of your study records
Efforts will be made to keep the personal information in your research record private and
confidential, but absolute confidentiality cannot be guaranteed. The University Hospitals
of Cleveland Institutional Review Board may review your study records. If your records
are reviewed your identity could become known
Contact information
Hala Saied has described to you what is going to be done; the risks, hazards, and benefits
involved, and can be contacted at (440) 995-1909. Further information with respect to
174
illness or injury resulting from a research procedure as well as a research subjects' rights
is available from the Office of the Chief Medical Officer at (216) 844-3695.
Signature
Signing below indicates that you have been informed about the research study in which
you voluntarily agree to participate; that you have asked any questions about the study
that you may have; and that the information given to you has permitted you to make a
fully informed and free decision about your participation in the study. By signing this
consent form, you do not waive any legal rights, and the investigator(s) or sponsor(s) are
not relieved of any liability they may have. A copy of this consent form will be provided
to you.
_______________________
Signature of participant
______________________
_______
Date
_______________________________
Printed Name of Participant
Date____ __________________________
Signature of Person Obtaining Consent
Printed Name of Person Obtaining Consent
_________________________ Date_____________
Signature of Principal Investigator (Affirming subject eligibility for the
Study and that informed consent has been obtained.)
175
Appendix I
SUBJECT AUTHORIZATION FOR USE AND DISCLOSURE OF
SUBJECT’S MEDICAL INFORMATION
Title of Research Study: Stress, Coping, Social support and Adjustment among
families of children in PICU after heart surgery
Principal Investigator: Hala Saied, PhD candidate, CWRU
This authorization explains how your medical information, referred to as “protected
health information” or “PHI,” may be used by the investigators or shared (disclosed) with
other people or entities in connection with the above research study that is listed in “Title
of Research Study” (the “Research Study”). Please read this authorization carefully.
You decide whether to allow the use and disclosure of your PHI or not to allow for the
use and disclosure of your PHI. If you do not sign this authorization for the use and
disclosure of your PHI, you will not be able to participate in the Research Study. If you
decide not to sign this authorization, your decision will not affect your regular treatment,
payment for healthcare, eligibility (or enrollment) for benefits.
Description of Your PHI That Will Be Used and Disclosed
If you sign this authorization, the following types of your PHI would be used and
disclosed in connection with the Research Study: type of current heart surgery, whether
transferred from another hospital and previous surgeries.
The Persons and Entities Authorized to Use and Disclose Your PHI
This authorization allows the following persons or entities (and their employees,
subcontractors, agents or other designees) to use and disclose your PHI. These persons
and entities are referred to in this authorization as the “Authorized Users”; and the
Authorized Users are:
• the Principal Investigator that is listed above as “Principal Investigator”;
• co-investigators in the Research Study;
• University Hospitals of Cleveland
• Case Western Reserve University including the Research Staff of the Frances
Payne Bolten School of Nursing.
Additionally, PHI may be created through your participation in the Research Study, and
this PHI may be used and disclosed by the Authorized Users.
The Persons and Entities Authorized to Receive Your PHI
In addition to the Authorized Users listed above, your PHI may be disclosed to or
reviewed by other persons or entities (and their employees, subcontractors, agents or
176
other designees) involved in, or with oversight of, the Research Study. These persons
and entities include:
• The University Hospitals of Cleveland Institutional Review Board and any
Institutional Review Board accrediting body;
• The Department of Health and Human Services, Office of Human Research
Protections, and other governmental agencies and regulatory agencies;
• The Joint Commission for Accreditation of Healthcare Organizations.
Your PHI May Be Redisclosed by the Recipients of Your PHI
Please understand that once you give your authorization to release the PHI needed for the
Research Study, your information may be disclosed or given to other persons or entities
that are not required by law to maintain the privacy of your information; however, the
Authorized Users are committed to protecting the confidentiality of your PHI.
Your PHI Is Needed for the Following Purpose(s)
Your PHI will provide clinical data for the Research Study, and PHI is needed for the
Research Study because it may improve the understanding of stress and adjustment of
families who have children in PICU after heart surgery.
Findings resulting from the Research Study (that do not specifically identify you) may be
published or presented at meetings so that the findings may be useful to others.
Expiration of Your Authorization
Your authorization will remain in effect until the end of the Research Study.
Terminating or Withdrawing Your Authorization
You have the right to withdraw your authorization at any time. Your withdrawal from
the Research Study does not automatically revoke your authorization to use and disclose
your PHI. To withdraw your authorization to use and disclose your PHI, you must
provide written notice that you are withdrawing your authorization to:
UHHS Privacy Officer
W.O. Walker Center
10524 Euclid Avenue, Suite 1131
177
Cleveland, Ohio 44106
and
Hala Saied
Frances Payne Bolton School of Nursing
Case Western Reserve University
10900 Euclid Avenue
Cleveland, Ohio 44124
Please note that all of the PHI that has already been used and/or disclosed as a result of
your participation in the Research Study may continue to be used and/or disclosed in
order to protect the integrity of the Research Study. However, the investigators will not
be able to collect any additional PHI about you for Research Study purposes after you
have withdrawn your authorization.
Your Ability to Access Your PHI Used in the Study
You will have the right to access PHI created during, or obtained in connection with, the
Research Study.
_________________________________________
Signature of Subject or Legally Authorized Representative
________________________________________
Date
_________________________________________
Print Name of Subject or Legally Authorized Representative
_________________________________________
Description of Legally Authorized Representative’s Authority
NOTE: a subject must receive a signed copy of the Authorization.
178
References
Abidin, R. R. (1986). Parenting Stress Index: Pediatric Psychology Press.
Ahmann, E. (1998). Review and commentary: two studies regarding giving "bad
news". Pediatric Nursing, 24(6), 554-556.
Allan, L. (1996). Fetal cardiac anomalies. Progress in Pediatric Cardiology, 5, 103112.
Allan, L. (1996). Fetal cardiology. Current opinion in obstetrics & gynecology, 8,
142-147.
Allan. (1994). Fetal congenital heart disease: diagnosis and management. Current
opinion in obstetrics & gynecology, 6, 45-49.
American Heart Association. (2006). Congenital cardiovascular Disease Statistics.
Retrieved 12-5, 2006, from http://www.americanheart.org
Armstrong, B. E. (1995). Congenital cardiovascular disease and cardiac surgery in
childhood: Part 1. Cyanotic congenital heart defects. Current Opinion in
Cardiology, 10(1), 58-67.
Armstrong, B. E. (1995). Congenital cardiovascular disease and cardiac surgery in
childhood: Part 2. A cyanotic congenital heart defects and interventional
techniques. Current Opinion in Cardiology, 10(1), 68-77.
Antonovsky, A. (1974). Conceptual and methodological problems in the study of
resistance resources and stressful life events. In B. S. Dohrenwend & B. P.
Dohrenwend (Eds.), Stressful life events: Their nature and effects. New York: Wiley.
Athreya, B. H., & McCormick, M. C. (1987). Impact of chronic illness on families.
Rheumatic diseases clinics of North America, 13(1), 123-131.
179
Austin, J. K. (1990). Assessment of coping mechanisms used by parents and children
with chronic illness. MCN American Journal of Maternal & Child Nursing,
15(2), 98-102.
Barbarin, O. A., & Chesler, M. A. (1984). Relationships with the medical staff and
aspects of satisfaction with care expressed by parents of children with cancer.
J Community Health, 9(4), 302-313.
Chesler, M. A., & Barbarin, O. A. (1984). Relating to the medical staff: how parents
of children with cancer see the issues. Health Soc Work, 9(1), 49-65.
Barrera, M., Jr. (1981). Social support in the adjustment of pregnant adolescents. In
B. Gottleib (Ed.), Social networks and social support. Beverly Hills: Sage.
Barrera, M., Jr., & Ainlay, S. L. (1983). The structure of social support: a conceptual
and empirical analysis. Journal of community psychology, 11(2), 133-143.
Barrera, M., Jr., Sandler, I. N., & Ramsay, T. B. (1981). Preliminary development of
a scale of social support: Studies on college students. American Journal of
Community Psychology, 9, 435-447.
Bassili, A., Mokhtar, S., Dabous, N., Zaher, S., Mokhtar, M., & Zaki, A. (2000).
Congenital heart disease among school children in Alexandria, Egypt: An
Overview on prevalence and relative Frequencies. Journal of Tropical
Pediatrics, 46 (6), 357-62.
Beavers, J., Hampson, R. B., Hulgus, Y. F., & Beavers, W. R. (1986). Coping in
families with a retarded child. Family process, 25(3), 365-378.
Beck, A., Kouacs, M., & Weissman, A. (1975). Hopelessness and suicidal behavior.
Journal of the American Medical Association, 234, 1146-1149.
180
Beckman, P. J. (1991). Comparison of mothers' and fathers' perceptions of the effect
of young children with and without disabilities. American journal of mental
retardation, 95(5), 585-595.
Bennett, J. A. (2000). Mediator and moderator variables in nursing research:
conceptual and statistical differences. Research in nursing & health, 23(5),
415-420.
Berenbaum, J., & Hatcher, J. (1992). Emotional distress of mothers of hospitalized
children. Journal of Pediatric Psychology, 17(3), 359-372.
Berstein, D. (1996). Congenital heart disease. In W. Nelson, R. Behrman, R.
Kliegman &A. Arvin (Eds.), Nelson Textbook of Pediatrics. Philadelphia:
Saunders.
Beutler, L. E., Moos, R. H., & Lane, G. (2003). Coping, treatment planning, and
treatment outcome: discussion. Journal of Clinical Psychology, 59(10), 11511167.
Blinceo. (2005). Fetal congenital heart disease detection and care. British Journal of
Midwifery, 13(7), 452-455.
Board, R., & Ryan-Wenger, N. (2000). State of the science on parental stress and
family functioning in pediatric intensive care units. American journal of
critical care, 9(2), 106-122; quiz 123-104.
Board, R. (2004). Father stress during a child's critical care hospitalization. Journal of
Pediatric Health Care, 18(5), 244-249.
181
Boneva, R. S., Botto, L. D., Moore, C. A., Yang, Q., Correa, A., & Erickson, J. D.
(2001). Mortality associated with congenital heart defects in the United States:
trends and racial disparities, 1979-1997. Circulation, 103(19), 2376-2381.
Boss, P. (2002). Family stress management: A contextual approach. Minnesota:
University of Minnesota.
Bousso, R. S., & angelo, M. (2003). The family in the intensive care unit: Living the
possibility of losing a child. Journal of Family Nursing, 9(2), 212-221.
Brannan, A. M., Heflinger, C. A., & Foster, M. (2003). The role of caregiver strain
and other family variables in determining children's use of mental health
services. Journal of Emotional and Behavioral Disorders, 11(2), 77-91.
Brazil, K., & Krueger, P. (2002). Patterns of family adaptation to childhood asthma.
Journal of pediatric nursing, 17(3), 167-173.
Brink, P., & Wood, M. (1989). Advanced design in nursing research (2nd ed.).
ThousandOaks: Sage Publication.
Bristow, J. (1995). The search for genetic mechanisms of congenital heart disease.
Cellular and Molecular Biology Research, 41(5), 307-319.
Buehler, C. (1990). Adjustment. In J. T. F. Perlumutter & M. A. Straus (Eds.),
Handbook of Family Measurement Techniques (pp. 493-516). Newbury Park:
CA: Sage.
Burns, N., & Grove, S. K. (1997). The practice of nursing research: Conduct,
Critique,& Utilization (3rd ed.). Philadelphia: W.B. Saunders’s Company.
Burton, D. A., & Cabalka, A. K. (1994). Cardiac evaluation of infants: The first year
of life. The Pediatric Clinics of North America, 41(5), 991-1015.
182
Byles, J., Byrne, C., Boyle, M., & Offord, D. (1988). Ontario child health study:
Reliability and validity of the General Functioning Subscale of the McMaster
Family Assessment Device. Family Process, 27, 29-104.
Cadman, D., Rosenbaum, P., Boyle, M., & Offord, D. R. (1991). Children with
chronic illness: family and parent demographic characteristics and
psychosocial adjustment. Pediatrics, 87(6), 884-889.
Canam, C. (1993). Common adaptive tasks facing parents of children with chronic
conditions. Journal of Advanced Nursing, 18(1), 46-53.
Caplan, G. (1974). Support systems and community mental health. New York:
Behavioral Publication.
Caplan, G. (1976). The family as support system. In G. Caplan & M. Killilea (Eds.),
Support systems and mutual help: Multidisciplinary explorations. New York:
Grune & Stratton.
Carey, L., Nicholson, B., & Fox, R. (2002). Maternal factors related to parenting
young children with congenital heart disease. Journal of Pediatric Nursing,
17(3), 174-183.
Carnevale, F. A. (1985). Nursing the critically ill child. A responsive approach. Focus
Critical Care, 12(5), 10-13.
Carnevale, F. A. (1990). A description of stressors and coping strategies among
parents of critically ill children--a preliminary study. Intensive Care Nursing,
6(1), 4-11.
183
Carnevale, F. A. (1999). Striving to recapture our previous life: the experience of
families with critically ill children. Journal of the Canadian Association for
Critical Care Nursing, 10(1), 16-22.
Carter, M. C., & Miles, M. S. (1982). Parental stressor scale: Pediatric ICU
(Abstract). Nursing Research, 31(121).
Carter, M. C., & Miles, M. S. (1983). Parental Stressor Scale: Pediatric Intensive
Care Unit.
Carter, M. C., & Miles, M. S. (1989). The Parental Stressor Scale: Pediatric Intensive
Care Unit. Maternal Child Nursing Journal, 18(3), 187-198.
Carter, M. C., Miles, M. S., Buford, T. H., & Hassanein, R. S. (1985). Parental
environmental stress in pediatric intensive care units. Dimensions of Critical
Care Nursing, 4(3), 180-188.
Carter, M. C., Miles, M. S., Buford, T. H., & Hassanein, R. S. (1985). Parental
environmental stress in pediatric intensive care units. Dimensions of Critical
Care Nursing, 4(3), 180-188.
Chang, A. (2003). Starting a pediatric intensive care program: essential elements for
sustained success. Progress in pediatric cardiology, 18, 123-130.
Chesler, M. A., & Barbarin, O. A. (1984). Relating to the medical staff: how parents
of children with cancer see the issues. Health & Social Work, 9(1), 49-65.
Clements, D. B., Copeland, L. G., & Loftus, M. (1990). Critical times for families
with a chronically ill child. Pediatric Nursing, 16(2), 157-161, 224.
Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic
Medicine, 38(5), 300-314.
184
Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.).
Hillsdale, NJ: Lawrence Erlbaum.
Cohen, M. H. (1993). Diagnostic closure and the spread of uncertainty. Issues in
Comprehensive Pediatric Nursing, 16(3), 135-146.
Cohen, M. H., & Martinson, I. M. (1988). Chronic uncertainty: its effect on parental
appraisal of a child's health. Journal of Pediatric Nursing, 3(2), 89-96.
Cohen, S., & Wills, T. (1985). Stress, social support and the buffering hypothesis.
Psychological Bulletin, 98, 310-357.
Cohn, J. K. (1996). An empirical study of parents' reaction to the diagnosis of
congenital heart disease in infants. Social Work & Health Care, 23(2), 67-79.
Cohen, M.S. (1999. families coping with childhood chronic illness: A research
review. Systems and Health, 17, 149-164.
Compas, B. E., Worsham, N. L., Ey, S., & Howell, D. C. (1996). When mom or dad
has cancer: II. Coping, cognitive appraisals, and psychological distress in
children of cancer patients. Health Psychology, 15(3), 167-175.
Compas, B., Worsham, N., & Ey, S. (1992). Conceptual and developmental issues in
children's coping with stress. In A. LaGreca, L. Siegel, J.Wallander & C.
Walker (Eds.), stress and Coping in child health (pp. 7-24). New York: The
Guildford Press.
Cook, E., & Higgins, S. (2000). Congenital heart disease. In P. Jackson & J. Vessey
(Eds.), Primary care of the child with a chronic condition (pp. 187-209). ST.
Louis: Mosby.
185
Copeland, L. G., & Clements, D. B. (1993). Parental perceptions and support
strategies in caring for a child with a chronic condition. Issues in
Comprehensive Pediatric Nursing, 16(2), 109-121.
Cousineau, A. I., & Lauer, R. M. (1995). Heart disease and children with Down
Syndrome. In V. Dyke (Ed.), Medical and surgical care for children with
Down syndrome: a guide for parents. Bethesda: Woodbine House.
Cronenwett, L. R., & Kunst-Wilson, W. (1981). Stress, social support, and the
transition to fatherhood. Nursing research, 30(4), 196-201.
Curley, M. A. (1988). Effects of the nursing mutual participation model of care on
parental stress in the pediatric intensive care unit. Heart & lung, 17(6 Pt 1),
682-688.
Curley, M. A., & Wallace, J. (1992). Effects of the nursing Mutual Participation
Model of Care on parental stress in the pediatric intensive care unit--a
replication. Journal of Pediatric Nursing, 7(6), 377-385.
Curley, M. A., & Wallace, J. (1992). Effects of the nursing Mutual Participation
Model of Care on parental stress in the pediatric intensive care unit--a
replication. Journal of Pediatric Nursing, 7(6), 377-385.
Cutrona, C. E., & Russell, D. W. (1990). Type of social support and specific stress:
Toward a theory of optimal matching. In I.G. Sarason, B. R. Sarason & G. R.
pierce (Eds.), Social support: an international view (pp. 319-366). New York:
John Wiley & Sons.
Danielson, C., Hamel-Bissell, B., & Winstead-Fry, P. (1993). Families, health &
Illness: Perspectives on coping and intervention. St Louis: Mosby.
186
Davis, C. C., Brown, R. T., Bakeman, R., & Campbell, R. (1998). Psychological
adaptation and adjustment of mothers of children with congenital heart
disease: stress, coping, and family functioning. Journal of Pediatric
Psychology, 23(4), 219-228.
Deatrick, J. A., & Knafl, K. A. (1988). Developing programs for hospitalized
children: clinical significance of qualitative research. Journal of Pediatric
Nursing, 3(2), 123-126.
DeMaso, D. R., Beardslee, W. R., Silbert, A. R., & Fyler, D. C. (1990). Psychological
functioning in children with cyanotic heart defects. Journal of Developmental
and Behavioral Pediatric, 11(6), 289-294.
DeMaso, D. R., Campis, L. K., Wypij, D., Bertram, S., Lipshitz, M., & Freed, M.
(1991). The impact of maternal perceptions and medical severity on the
adjustment of children with congenital heart disease. Journal of Pediatric
Psychology, 16(2), 137-149.
DeMaso, D. R., Spratt, E. G., Vaughan, B. L., D'Angelo, E. J., Van der Feen, J. R., &
Walsh, E. (2000). Psychological functioning in children and adolescents undergoing
radiofrequency catheter ablation. Psychosomatics, 41(2), 134-139.
DeMaso, D. R., Twente, A. W., Spratt, E. G., & O'Brien, P. (1995). Impact of
psychologic functioning, medical severity, and family functioning in pediatric
heart transplantation. Journal Heart Lung Transplant, 14(6 Pt 1), 1102-1108.
Derogatis, L. (1994). SCL-90-R: Administration, scoring, and procedures manualthird edition. Minneapolis, MN: National Computer Systems, Inc.
187
Derogatis, L. R. (1975). Brief Symptom Inventory. Baltimore: Clinical Psychometric
Research.
Diviney, E. (2001). Well-being of mothers while rearing a child with developmental
disabilities. New York University, New York.
Donaldson, S. K., & Crowley, D. M. (1978). The discipline of nursing. Nursing
Outlook, 26(2), 113-120.
Drotar, D. (1997). Relating parent and family functioning to the psychological
adjustment of children with chronic health conditions: what have we learned?
What do we need to know? Journal of Pediatric Psychology, 22(2), 149-165.
Duhn, G. (1998). Struggling to feed for survival: Mothers and infants with congenital
heart disease and sever feeding difficulties. Queen's University.
Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001). Moderators of
stress in parents of children with autism. Community & Mental Health
Journal, 37(1), 39-52.
Dunst, C. J., Jenkins, V., & Trivette, C. M. (1988). Family support scale. In C.J.
Dunst, C.M. Trivette & A. G. Deal (Eds.), Enabling and empowering families:
Principles and guidelines for practice. Cambridge, MA: Brookline Books.
Dunst, C. J., Trivette, C. M., & Cross, A. H. (1986). Mediating influences of social
support: personal, family, and child outcomes. American Journal of Mental
Deficiency, 90(4), 403-417.
Eberly, T. W., Miles, M. S., Carter, M. C., Hennessey, J., & Riddle, I. (1985).
Parental stress after the unexpected admission of a child to the intensive care
unit. Critical Care Quarterly, 8, 57-65.
188
Ell, K. (1996). Social networks, social support and coping with serious illness: the
family connection. Social Science and Medicine, 42(2), 173-183.
Ellis, R. (1982). Conceptual issues inNursing. Nursing Outlook, 30(7), 406-410.
Endler, N. S., & Parker, J. D. (1990). Multidimensional assessment of coping: a
critical evaluation. Journal of Personality & Social Psychology, 58(5), 844854.
Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster Family
Assessment Device. Journal of Marital and Family Therapy.
Failla, S., & Jones, L. C. (1991). Families of children with developmental disabilities:
an examination of family hardiness. Research in Nursing & Health, 14(1), 4150.
Farrell, M. F., & Frost, C. (1992). The most important needs of parents of critically ill
children: parents' perceptions. Intensive & Critical Care Nursing, 8(3), 130139.
Fawcett, J. (1978). The relationship between theory and research: A double helix.
Advances in Nursing Science, 1(1), 49-62.
Fawcett, J. (1980). A framework for analysis and evaluation of conceptual models of
nursing. Nurse Educator, 5(6), 10-14.
Fawcett, J. (1984). The metaparadigm of nursing. Image, 16(3), 84-87.
Ferrell, B. R., Rhiner, M., Shapiro, B., & Dierkes, M. (1994). The experience of
pediatric cancer pain, Part I: Impact of pain on the family. Journal of
Pediatric Nursing, 9(6), 368-379.
189
Ferrell, B. R., Rhiner, M., Shapiro, B., & Strause, L. (1994). The family experience of
cancer pain management in children. Cancer Practice, 2(6), 441-446.
Flaherty, J. A., Gaviria, F. M., & Pathak, D. S. (1983). The measurement of social
support: the Social Support Network Inventory. Comprehensive Psychiatry,
24(6), 521-529.
Figley, C. R. (1983). Catastrophes: An overview of family reactions. In C. Figley &
M. H.I. (Eds.), Stress and the family (pp. 3-20). New York: Brunnel/mazel.
Figley, C. R. (1989). Treating stress in families. New York: Brunner-Mazel.
Fink, S. V. (1995). The influence of family resources and family demands on the
strains and well-being of caregiving families. Nursing Research, 44(3), 139146.
Finney, J. W., Mitchell, R. E., Cronkite, R. C., & Moos, R. H. (1984).
Methodological issues in estimating main and interaction effect: Examples
from coping/ social and stress field. Journal of health and social behavior, 25,
85-98.
Finch, J. F., Okun, M. A., Pool, G. J., & Ruehlman, L. S. (1999). A comparison of the
influence of conflictual and supportive social interactions on psychological
distress. Journal of Personality Assessment, 67(4), 581-621.
Fiore, J., Becker, J., & Coppel, D. B. (1983). Social network interactions: a buffer or
a stress. American Journal of Community Psychology, 11(4), 423-439.
Fiore, J., Coppel, D. B., Becker, J., & Cox, G. B. (1986). Social support as a
multifaceted concept: examination of important dimensions for adjustment.
American Journal of Community Psychology, 14(1), 93-111.
190
Fiser, D. H. (1992). Assessing the outcome of pediatric intensive care. Journal of
Pediatrics, 121, 68-74.
Flaherty, J. A., Gaviria, F. M., & Pathak, D. S. (1983). The measurement of social
support: The support network inventory. Comprehensive Psychiatry, 24, 521529.
Frey, K. S., Greenberg, M. T., & Fewell, R. R. (1989). Stress and coping among
parents of handicapped children: A multidimensional approach. American
Journal Mental Retardation, 94(3), 240-249.
Frey, K. S., Rebecca, R. R., V, Vadasy, P. F., & Carter, M. C. (1989). Parental
adjustment and changes in child outcome among families of young
handicapped children. Topic in early childhood Special Education, 8(438457).
Friedman, M. M., Savarsdottier, E. K., & McCubbin, M. (1998). Family stress and
coping process:Family adaptation. In M. M. Friedman (Ed.), Family nursing:
research, theory, and practice (4th ed., pp. 435-478). Stamford, CT: Appleton
& Lange.
Friedman, M., Bowden, V., & Jones. (2003). Family nursing: research, theory, &
practice. New Jersey: Pearson Education.
Friedman, W. (1999). Congenital Heart Disease in Infancy and Childhood. In E.
Braunwald (Ed.), Heart disease: A textbook of Cardiovascular Medicine (pp.
887-965). Philadelphia: W.B. Saunders Company.
Galal, O. (1997). Pediatric Cardiology Introduction. Retrieved 1, 1
191
Gardner, F. V., Freeman, N. H., Black, A. M., & Angelini, G. D. (1996). Disturbed
mother-infant interaction in association with congenital heart disease. Heart,
76(1), 56-59.
Glawson, J. (1996). Child with chronic illness and the process of family adaptation.
Journal of Pediatric Nursing, 11, 52-61.
Goldberg, D. (1972). The detection of psychiatric illness by questionnaire. Oxford:
Oxford University Press.
Goldberg, L., & Breznitz, S. (1982). Handbook of stress: Theoretical and clinical
aspects. New York: The Free Press.
Goldberg, S. (1991). Recent developments in attachment theory and research.
Canadian Journal of Psychiatry, 36(6), 393-400.
Goldberg, S., Janus, M., Washington, J., Simmons, R. J., MacLusky, I., & Fowler, R.
S. (1997). Prediction of preschool behavioral problems in healthy and
pediatric samples. Journal of Developmental and Behavioral Pediatrics,
18(5), 304-313.
Goldberg, S., Morris, P., Simmons, R. J., Fowler, R. S., & Levison, H. (1990).
Chronic illness in infancy and parenting stress: a comparison of three groups
of parents. Journal of Pediatric Psychology, 15(3), 347-358.
Goldberg, S., Simmons, R. J., Newman, J., Campbell, K., & Fowler, R. S. (1991).
Congenital heart disease, parental stress, and infant-mother relationships.
Journal of Pediatric Nursing, 119(4), 661-666.
Gomez, C. A. (2003). Infants with complex congenital heart disease: the impact of
fetal diagnosis. ACC Current Journal Review (Nov/Dec), 71-75.
192
Goncalves, L. F., Nien, J. K., Espinoza, J., Kusanovic, J. P., Lee, W., Swope, B., et al.
(2006). What does 2-dimensional imaging add to 3- and 4-dimensional
obstetric ultrasonography? Journal of Ultrasound in Medicine, 25(6), 691699.
Gottleib, B. (1981). Social networks and social support in community mental health.
Beverly: Sage.
Grech, V., & Elliott, M. J. (1998). Evolution of surgical trends in congenital heart
disease: a population based study. International Journal of Cardiology, 66(3),
285-292.
Green, A. (2004). Outcomes of Congenital heart disease: A review. Pediatric nursing,
30(4), 280-284.
Greenberg, D. L. (1983). Support systems and parent stress in families with trainable
mentally retarded youngsters. Unpublished Doctoral Dissertation, University
of Pennsylvania.
Grey, M., & Sullivan-Bolyai, S. (1999). Key issues in chronic illness research:
lessons from the study of children with diabetes. Journal of Pediatric Nursing,
14(6), 351-358.
Griffin, K. J., Elkin, T. D., & Smith, C. J. (2003). Academic outcomes in children
with congenital heart disease. Clinical Pediatrics, 42(5), 401-409.
Grossman, M. (1995). Received support and psychological adjustment in criticallyinjured patients and their family. The Journal of Neuroscience Nursing, 27(1),
11-23.
193
Haller, K. B., & Holditch-Davis, D. (2000). Guidelines for statistical reporting.
Journal of Obstetric, Gynecology and Neonatal Nursing, 29(2), 121.
Haines, C., Perger, C., & Nagy, S. (1995). A comparison of the stressors experienced
by parents of intubated and non-intubated children. Journal of Advanced
Nursing, 21(2), 350-355.
Hamed, M. A., & Maher, K. A. (2000). Reflections on the etiology and prevention of
congenital heart disease. Egyptian Heart Journal,
http://www.egyptheart.org/EHJ1/EJCTSI/Jescts-eaindex.htm (accessed 2
April 2006).
Hamlett, K. W., Pellegrini, D. S., & Katz, K. S. (1992). Childhood chronic illness as a
family stressor. Journal of Pediatric Psychology, 17(1), 33-47.
Harris, B. H., Schwaitzberg, S. D., Seman, T. M., & Herrmann, C. (1989). The
hidden morbidity of pediatric trauma. Journal of Pediatric Surgery, 24(1),
103-105; discussion 105-106.
Hawthorne, M. H. (1994). Gender differences in recovery after coronary artery
surgery. Image—the Journal of Nursing Scholarship 26(1), 75-80.
Hayes, N. (2000). Response to uncertainty in childhood illness: A synthesis of the
parent and child literature. Scholarly inquiry for nursing practice: An
international Journal, 14(4).
Hayes, N., Stainton, M. C., & McNeil, D. (1993). Caring for a chronically ill infant: a
paradigm case of maternal rehearsal in the neonatal intensive care unit.
Journal of Pediatric Nursing, 8(6), 355-360.
194
Helgeson, V. S. (2003). Social support and quality of life. Quality of Life Research,
12 Suppl 1, 25-31.
Hentinen, M., & Kyngas, H. (1998). Factors associated with the adaptation of parents
with a chronically ill child. Journal of Clinical Nursing, 7(4), 316-324.
Heuer, L. (1993). Parental stressors in a pediatric intensive care unit. Pediatric
Nursing, 19(2), 128-131.
Hill, E. E. (1993). Variables associated with psychological well-being of family
members of trauma patients. Unpublished doctoral dissertation, The Catholic
University of America, Washington, D. C.
Hill, R. (1949). Families Under Stress. New York: Harper & Row.
Hinkle, L. E., Jr. (1974). The concept of "stress" in the biological and social sciences.
The International Journal of Psychiatry in Medicine, 5(4), 335-357.
Hirsch, B. J. (1980). Natural support systems and coping with major life changes.
American Journal of community psychology, 159-172.
Hobbs, C., James, J., Jernigan, S., Melnyk, S., Lu, Y., Malik, S., et al. (2006).
Congenital heart defects, maternal homocysteine, smoking, and the 677 C>T
polymorphism in the methylenetetrahydroflate reductase gene: evaluating
gene environment interactions. American Journal of obstetric gynecology
(194), 218-224.
Hoffman, J. (1990). Congenital heart disease: Incidence and Inheritance. The
Pediatric clinics of North America, 37(1), 25-43.
Hoffman, J. I. (1990). Congenital heart disease: incidence and inheritance. Pediatric
Clinic of North America, 37(1), 25-43.
195
Holditch-Davis, D., & Miles, M. S. (2000). Mothers' stories about their experiences in
the neonatal intensive care unit. Neonatal Network, 19(3), 13-21.
Holditch-Davis, D., Bartlett, T. R., & Belyea, M. (2000). Developmental problems
and interactions between mothers and prematurely born children. Journal of
Pediatric Nursing, 15(3), 157-167.
Holditch-Davis, D., Miles, M. S., & Belyea, M. (2000). Feeding and non-feeding
interactions of mothers and premature. West Journal of Nursing Research,
22(3), 320-334.
Hombeck, G. N. (1997). Toward terminological, conceptual, and statistical clarity in
the study of mediators and moderators: Examples from the child-clinical and
pediatric psychology literatures. Journal of Consulting and Clinical
Psychology, 65(599-610).
House, J. (1981). Work stress and social support reading. MA: Addison-Wesley.
House, J. S., & Kahn, R. L. (1985). Measures and concepts of social support. In S.
Cohen & S. L. Syme (Eds.), Social support and health (pp. 83-108). Orlando,
FL: Academic Press.
House, J. S., Landis, K. R., & Umberson, D. (1988). Social relationships and health.
Science, 241(4865), 540-545.
Huckabay, L. M., & Tilem-Kessler, D. (1999). Patterns of parental stress in PICU
emergency admission. Dimensions of Critical Care Nursing, 18(2), 36-42.
Hunfeld, J., Tempels, A., Passchier, J., Hazebrock, F., & Tibboel, D. (1999). Brief
report: Parental burden and grief one year after the birth of a child with a
congenital anomaly. Journal of pediatric psychology, 24(6), 515-520.
196
Fisher, M. D. (1994). Identified needs of parents in a pediatric intensive care unit.
Critical Care Nurse, 14(3), 82-90.
Ievers, C. E., Brown, R. T., Lambert, R. G., Hsu, L., & Eckman, J. R. (1998). Family
functioning and social support in the adaptation of caregivers of children with
sickle cell syndromes. Journal of Pediatric Psychology, 23(6), 377-388.
Ievers, C. E., Brown, R. T., Lambert, R. G., Hsu, L., & Eckman, J. R. (1998). Family
functioning and social support in the adaptation of caregivers of children with
sickle cell syndromes. Journal of Pediatric Psychology, 23(6), 377-388.
J, B. (1992). Future Edge. New York: William Morrow.
Jackson, P. L., & VESSey, J. A. (1992). Primary care of the child with a chronic
condition. ST. Louis: Mosby.
Jaffe, K. M., Fay, G. C., Polissar, N. L., Martin, K. M., Shurtleff, H., Rivara, J. B., et
al. (1992). Severity of pediatric traumatic brain injury and early
neurobehavioral outcome: a cohort study. Achieve of Physical Medicine and
Rehabilitation, 73(6), 540-547.
Johnson, D. I. (1995). Using external data and databases: issues and sources. Journal
of Nursing Care Quality, 10(1), 31-39.
Johnson, B. (1995. One family’s experience with head injury: a phenomenological
study. Journal of Neuroscience Nursing, 17(2)113-118
Johnson, P. A., Nelson, G. L., & Brunnquell, D. J. (1988). Parent and Nurse
Perceptions of Parent Stressors in the Pediatric Intensive Care Unit. Children's
Health Care, 17(2), 98-105.
197
Jonas, R. A. (1995). Advances in surgical care of infants and children with congenital
heart disease. Current Opinion in Pediatrics, 7(5), 572-579.
Jones, L. C., & Parks, P. (1990). Frequency of illness in mother-infant dyads. Health
Care for Women International, 11(4), 461-475.
Jones, S. M., Fiser, D. H., & Livingston, R. L. (1992). Behavioral changes in
pediatric intensive care units. American Journal of Disease of Children,
146(3), 375-379.
Kasper, J. W., & Nyamathi, A. M. (1988). Parents of children in the pediatric
intensive care unit: what are their needs? Heart Lung, 17(5), 574-581.
Katz, S. (2002). When the child's illness is life threatening: impact on the parents.
Pediatric Nursing, 28(5), 453-463.
Kaul, M. (1995). Psychological adaptation of mothers of children with congenital
heart disease: the role of social support and social relationships. Unpublished
PhD, Wayne State University, Detroit, Michigan.
Kaul, M. (1995). Psychological adaptation of mothers of children with congenital
heart disease: the role of social support and social relationships. Unpublished
PhD, Wayne State University, Detroit, Michigan.
Kaz, M., R. S. (1984). Differences , difficulties and adaptation: stress and social
networks in families with a handicapped child. Family Relations, 33, 67-77.
Kazak, A. E. (1989). Families of chronically ill children: a systems and socialecological model of adaptation and challenge. Journal of Consulting and
Clinical Psychology, 57(1), 25-30.
198
Kazak, A. E., & Clark, M. W. (1986). Stress in families of children with
myelomeningocele. Developmental Medicine and Child Neurology, 28(2),
220-228.
Kazak, A. E., & Marvin, R. S. (1984). Differences, difficulties, and adaptation: stress
and social network in families with a handicapped child. Family Relations, 33,
67-77.
Kazak, A. E., & Wilcox, B. L. (1984). The structure and function of social support
networks in families with handicapped children. American Journal of
Community Psychology, 12(6), 645-661.
Kessler, R. C., Price, R. H., & Wortman, C. B. (1985). Social factors in
psychopathology: stress, social support, and coping processes. Annual Review
of Psychology, 36, 531-572.
Kim, H. (1997). Theoretical thinking in nursing: Problems and prospects. In L.
Nicolle (Ed.), Perspectives on nursing theory (3 ed., pp. 166-176). New York:
Lippincott.
Kirschbaum, M. S. (1990). Needs of parents of critically ill children. Dimens Crit
Care Nurs, 9(6), 344-352.
Kline, R. B. (1998). Principles and practice of structural equation modeling. New
York: Guilford.
Kosciulek, J. F. (1994). Relationship of family coping with head injury to family
adaptation. Rehabilitation Psychology, 39, 215-230.
199
Kramer, H. H., Majewski, F., Trampisch, H. J., Rammos, S., & Bourgeois, M. (1987).
Malformation patterns in children with congenital heart disease. American
Journal of Diseases of Children, 141(7), 789-795.
Kugelmann, R. (1992). Stress: The nature and history of engineered grief. Westport:
CT: Praeger.
LaMontagne, L. L., & Pawlak, R. (1990). Stress and coping of parents of children in a
pediatric intensive care unit. Heart and Lung, 19(4), 416-421.
LaMontagne, L. L., Hepworth, J. T., Pawlak, R., & Chiafery, M. (1992). Parental
coping and activities during pediatric critical care. American Journal of
Critical Care, 1(2), 76-80.
Lasky, P., Buckwalter, K. C., Whall, A., Lederman, R., Speer, J., McLane, A., et al.
(1985). Developing an instrument for the assessment of family dynamics.
Western Journal of Nursing Research, 7(1), 40-57.
Laussen, P., & Roth, S. (2003). Fast tracking: efficiently and safely moving patients
through the intensive care unit. Progress in Pediatric Cardiology, 18, 149158.
Lavee, Y., McCubbin, H. I., & Patterson, J. M. (1985). The double ABCX model of
stress and adaptation: An empirical test by analysis of structural equations
with latent variables. Journal of Marriage and the Family, 47(811-825).
Lawoko, S., & Soares, J. (2002). Distress and hopelessness among parents of children
with congenital heart disease, parents of children with other diseases, and
parents of healthy children. Journal of Psychosomatic Research, 52, 193-208.
200
Lawoko, S., & Soares, J. (2003). Quality of life among parents of children with
congenital heart disease, parents of children with other diseases and parents of
healthy children. Quality of Life Research, 12, 655-666.
Lazarus, R. S. (1985). The psychology of stress and coping. Issues in Mental Health
Nursing, 7(1-4), 399-418.
Lazarus, R. S. (1992). Coping with the stress of illness. WHO Regional Publications
European Series, 44, 11-31.
Lazarus, R. S. (1993). Coping theory and research: past, present, and future.
Psychosomatic Medicine, 55(3), 234-247.
Lazarus, R. S. (1993). Psychological stress and the coping process. New York:
McGraw.
Lazarus, R. S. (2000). Toward better research on stress and coping. American
Psychologist, 55(6), 665-673.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. New York:
Springer.
Lazarus, R. S., DeLongis, A., Folkman, S., & Gruen, R. (1985). Stress and
adaptational outcomes. The problem of confounded measures. American
Psychologist, 40(7), 770-785.
Lazon, S. E. (1995). Relationship among informal caregiving, social support and
health in wife caregivers to elders. Unpublished doctoral dissertation, Case
Western Reserve University, Ohio.
Lee, S. L., & Chen, Y. C. (2001). Stressors and coping behaviors of mothers with
child receiving open heart surgery. Nursing Research 9(2), 172-182.
201
Leske, J., & Jiricka, M. (1998). Impact of family demands and family strengths and
capabilities on family well-being and adaptation after critical injury. American
Journal of Critical Care, 7(5), 383-392.
Lewandowski, L. A. (1980). Stresses and coping styles of parents of children
undergoing open-heart surgery. Cataloging and Classification Quarterly, 3(1),
75-84.
Lieberman, M. A., & Mullan, J. T. (1978). Does help? The adaptive consequences of
obtaining help from professionals and social networks. American Journal of
community psychology, 6(5), 499-517.
Lilly, L. S. (1998). Pathophysiology of heart disease: A collaborative project of
medical students and faculty (2 ed.). Lippincott Williams and Wilkins:
Philadelphia.
Limperopoulos, C., Majnemer, A., Rosenblatt, B., Shevell, M., Rohlicek, C., &
Tchervenkov, C. (1999). Multimodality evoked potential findings in infants
with congenital heart defects. Journal of Child Neurology, 14(11), 702-707.
Limperopoulos, C., Majnemer, A., Shevell, M. I., Rosenblatt, B., Rohlicek, C., &
Tchervenkov, C. (1999). Neurologic status of newborns with congenital heart
defects before open heart surgery. Pediatrics, 103(2), 402-408.
Lin, S. (1998). An investigation of coping as predictors of adaptation in families of
children with cerebral palsy. Unpublished Doctoral dissertation, University of
Wisconsin, Madison.
202
LoBiondo-Wood, G., Bernier-Henn, M., & Williams, L. (1992). Impact of the child's
liver transplant on the family: maternal perspective. Pediatric Nursing, 18(5),
461-466.
Lobo, M. L. (1992). Parent-infant interaction during feeding when the infant has
congenital heart disease. Journal of Pediatric Nursing, 7(2), 97-105.
Lobo, M. L., & Michel, Y. (1995). Behavioral and physiological response during
feeding in infants with congenital heart disease: A naturalistic study. Progress
in Cardiovascular Nursing, 10(3), 26-34.
Loveland-Cherry, C. J., Youngblut, J. M., & Leidy, N. W. (1989). A psychometric
analysis of the Family Environment Scale. Nursing Research, 38(5), 262-266.
Lubinsky, M. S. (1994). Bearing bad news:dealing with the mimics of denial. Journal
of Genetic Counseling, 3, 5-12.
Magni, G., Silvestro, A., Tamiello, M., Zanesco, L., & Carli, M. (1988). An
integrated approach to the assessment of family adjustment to acute
lymphocytic leukemia in children. Acta Psychiatrica Scandinavica, 78(5),
639-642.
Mahon, N. E., Yarcheski, A., & Yarcheski, T. J. (1994). Differences in social support
and loneliness in adolescents according to developmental stage and gender.
Public Health Nursing, 11(5), 361-368.
Mahoney, L. T. (1993). A cyanotic congenital heart disease. Atrial and ventricular
septal defects, atrioventricular canal, patent ducts arteriosus, pulmonic
stenosis. Cardiology Clinics, 11(4), 603-616.
203
Mailick, M. D., Holden, G., & Walther, V. N. (1994). Coping with childhood asthma:
caretakers' views. Health and Social Work, 19(2), 103-111.
Majnemer, A., & Limperopoulos, C. (1999). Developmental progress of children with
congenital heart defects requiring open heart surgery. Seminars in Pediatric
Neurology, 6(1), 12-19.
Martinez, E., Sian, A., Kleinman, C., & Copel, J. (1996). Fetal Cardiac implications
of maternal systemic disease. Progress in Pediatric Cardiology, 5, 91-101.
Mastroyannopoulou, K., Stallard, P., Lewis, M., & Lenton, S. (1997). The impact of
childhood non-malignant life-threatening illness on parents: gender
differences and predictors of parental adjustment. Journal of Child
Psychology & Psychiatry, 38(7), 823-829.
Mayall, B. (1993). Keeping children healthy: The intermediate domain. Social
Science and Medicine, 36, 77-83.
Mayberry, J. C., Scott, W. A., & Goldberg, S. J. (1990). Increased birth prevalence of
cardiac defects in Yuma, Arizona. Journal of the American College of
Cardiology, 16(7), 1696-1700.
McCain, G. C. (1990). Family functioning 2 to 4 years after preterm birth. Journal of
Pediatric Nursing, 5(2), 97-104.
McColl, M. A. (1995). Social support, disability, and rehabilitation. Critical Reviews
in physical and rehabilitation Medicine, 7(4), 315-333.
McCubbin, H. I., & McCubbin, M. A. (1987). Family stress theory and assessment:
The T- Double ABCX Model of Family Adjustment and Adaptation. In M.
204
H.I. & A. Thompson (Eds.), Family assessment inventories for research and
practice (pp. 3-32). Madison: University of Wisconsin.
McCubbin, H. I., & Patterson, J. M. (1982). Family adaptation to crisis. In M. H.I., A.
Cauble & J. Patterson (Eds.), Family stress, coping, and social support (pp.
26-47). Springfield, Illinois: Charles C. Thomas.
McCubbin, H. I., & Patterson, J. M. (1983). Family transitions: Adaptation to stress.
In M. H.I. & C. R. Figley (Eds.), Stress and the Family: Coping with
normative transitions,1. New York: Brunner/ Mazel.
McCubbin, H. I., & Patterson, J. M. (1983). The double ABC-X Model of adjustment
and adaptation. In H. I. McCubbin, M.B. Sussman & J. M. Patterson (Eds.),
Social stress and the family: Advances and the development on family stress
theory and research. New York: Hayworth Press.
McCubbin, H. I., & Patterson, J. M. (1996). Family Inventory of Life Events and
Changes. In H.McCubbin & A.Thompson (Eds.), Family assessment:
Resiliency, coping, and adaptation-Inventories for research and practice (pp.
81-100). Madison: University of Wisconsin, Madison.
McCubbin, H. I., & Thompson, A. I. (1987). Family assessment inventories for
research and practice. Madison: University of Wisconsin.
McCubbin, H. I., McCubbin, M. A., Nevin, R., & Cauble, E. (1981). Coping Health
Inventory for Parents (CHIP). In M. H.I., A. I. Thompson & M. A. McCubbin
(Eds.), Family assessment: Resiliency, coping and Adaptation: Inventories for
research and practice. Madison: University of Wisconsin.
205
McCubbin, H. I., McCubbin, M. A., Nevin, R., & Cauble, E. (1996). Coping Heath
Inventory for Parents (CHIP). In M. H.I., A. I. Thompson & M. M.A. (Eds.),
Family assessment: Resiliency, coping, and adaptation-Inventories for
research and practice (pp. 407-453). Madison: WI: University of Wisconsin
System.
McCubbin, H. I., McCubbin, M. A., patterson, J. M., Cauble, A. E., Wilson, L. R., &
Warwick, W. J. (1983). CHIP-Coping heath inventory for parents: An
assessment of parental coping patterns in the care of the chronically ill child.
Journal of Marriage and the Family, 3(1), 359-370.
McCubbin, H. I., McCubbin, M. A., Thompson, A. I., & Han, S. Y. (1999).
Contextualizing family risk factors for alcoholism and alcohol abuse. Journal
of Studies on Alcohol Supplement, 13, 75-78.
McCubbin, H. I., Patterson, J. M., & Wilson, L. (1983). Family Inventory of Life
Events and Changes(FILE). In H.I.McCubbin, A.I.Thompson & M.AcCubbin
(Eds.), Family assessment: Resiliency, coping, adaptation, Inventories for
research and practice (pp. 103-178). Madison: WI: University of Wisconsin.
McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (1996). Family assessment:
Resiliency, Coping, and Adaptation. Madison, WI: University of Wisconsin.
McCubbin, H. I., Thompson, E. A., Thompson, A. I., McCubbin, M. A., & Kaston, A.
J. (1993). Culture, ethnicity, and the family: critical factors in childhood
chronic illnesses and disabilities. Pediatrics, 91(5 Pt 2), 1063-1070.
McCubbin, M. A. (1988). Response to "Measures of stress and related constructs".
Scholarly Inquiry for Nursing Practice, 2(1), 71-75.
206
McCubbin, M. A. (1989). Family stress and family strengths: a comparison of singleand two-parent families with handicapped children. Research in Nursing &
Health, 12(2), 101-110.
McCubbin, M. A., & McCubbin, H. I. (1991). Family stress theory and assessment:
the Resiliency Model of Family Stress, Adjustment and Adaptation. In
McCubbin HI & T. AI (Eds.), Family Assessment Inventories for Research
and Practice (pp. 3-32). Madison, WIS: University of Wisconsin-Madison.
McCubbin, M. A., & McCubbin, H. I. (1993). Families coping with illness: The
resiliency model of family stress, adjustment and adaptation. In C. Danielson,
B. Hamel-Bissell & P. Winstead fry (Eds.), Families, health, and illness:
Perspectives on coping and intervention. St. Louis: Harcourt Health Services.
McCubbin, M., & McCubbin , H. (1996). Resiliency in families: A conceptual model
of family adjustment and adaptation in response to stress and crises. In
H.I.McCubbin, A.I.Thompson & M. A. McCubbin (Eds.), Family assessment:
Resiliency, coping and adaptation-Inventories for research and practice (pp.
1-64). Madison: WI: University of Wisconsin System.
Melnyk, B. M., Feinstein, N. F., Moldenhouer, Z., & Small, L. (2001). Coping in
parents of children who are chronically ill: strategies for assessment and
intervention. Pediatric Nursing, 27(6), 548-558.
Melnyk, B. M., Small, L., & Carno, M. A. (2004). The effectiveness of parentfocused interventions in improving coping/mental health outcomes of
critically ill children and their parents: an evidence base to guide clinical
practice. Pediatric Nursing, 30(2), 143-148.
207
Meleis, A. I. (1991). Theoretical nursing: Development and progress (2 ed.).
Philadelphia: J.B: Lippincott.
Mercer, M., & Ritchie, J. A. (1997). Home community cancer care: parents'
perspectives. Journal of Pediatric Nursing, 12(3), 133-141.
Miles, M. S., & Carter, M. C. (1982). Sources of parental stress in pediatric intensive
care unit. Child Health Care, 11(2), 65-69.
Miles, M. S., & Carter, M. C. (1983). Assessing parental stress in intensive care units.
The American Journal of Maternal Child Nursing, 8(354-359).
Miles, M. S., & Carter, M. C. (1985). Coping strategies used by parents during their
child's hospitalization in an intensive care unit. Child Health Care, 14(1), 1421.
Miles, M. S., Carter, M. C., Eberly, T. W., Hennessey, J., & Riddle, II. (1989).
Toward an understanding of parent stress in the pediatric intensive care unit:
overview of the program of research. Maternal Child Nursing Journal, 18(3),
181-185.
Miles, M. S., Carter, M. C., Hennessey, J., Eberly, T. W., & Riddle, I. (1989). Testing
a theoretical model: correlates of parental stress responses in the pediatric
intensive care unit. Maternal Child Nursing Journal, 18(3), 207-219.
Miles, M. S., Carter, M. C., Riddle, I., Hennessey, J., & Eberly, T. W. (1989). The
pediatric intensive care unit environment as a source of stress for parents.
Maternity and Child Nursing Journal, 18(3), 199-206.
208
Miles, M. S., Carter, M. C., Spicher, C., & Hassanein, R. S. (1984). Maternal and
paternal stress reactions when a child is hospitalized in a pediatric intensive
care unit. Issues in Comprehensive Pediatric Nursing, 7(6), 333-342.
Miles, M. S., Carter, M. C., Spicher, C., & Hassanein, R. S. (1984). Maternal and
paternal stress reactions when a child is hospitalized in a pediatric intensive
care unit. Issues in Comprehensive Pediatric Nursing, 7(6), 333-342.
Miller, I., Epstein, N., Bishop, D., & Keitner, G. (1985). The McMaster Family
Assessment Device: Reliability and Validity. Journal of Maternal and family
Therapy, 1, 345-356.
Moes, D., Koegel, R. L., Schreibman, L., & Loos, L. M. (1992). Stress profiles for
mothers and fathers of children with autism. Psychology Report, 71(3 Pt 2),
1272-1274.
Monat, A., & Lazarus, R. S. (1991). Stress and coping: An anthology (3 ed.). New
York: Columbia University Press.
Monat, A., Averill, J. R., & Lazarus, R. S. (1972). Anticipatory stress and coping
reactions under various conditions of uncertainty. Journal of Personality &
Social Psychology, 24(2), 237-253.
Mu, P. F., & Tomlinson, P. (1997). Parental experience and meaning construction
during a pediatric health crisis. Western Journal of Nursing Research, 19(5),
608-628; discussion 628-636.
Munro, B. H. (2001). Statistical methods for health care research (3ed ed.).
Philadelphia: Lippincott.
209
Musil, C. M., Warner, C. B., Yobas, P. K., & Jones, S. L. (2002). A comparison of
imputation techniques for handling missing data. Western Journal of Nursing
Research, 24(7), 815-829.
Musil, C. M., Warner, C. B., Zauszniewski, J. A., Jeanblanc, A. B., & Kercher, K.
(2006). Grandmothers, care giving, and family functioning. The Journals of
Gerontology Series
Neff, C., & Spery, M. (1996). Introduction to maternal and child health nursing.
Philadelphia: Lippincott Company: Psychological Sciences and Social
Sciences 61(2), S89-98.
Newacheck, P. W., & Halfon, N. (1998). Prevalence and impact of disabling chronic
conditions in childhood. American Journal of Public Health, 88(4), 610-617.
Newacheck, P. W., & Taylor, W. R. (1992). Childhood chronic illness: prevalence,
severity, and impact. American Journal of Public Health, 82(3), 364-371.
Newcomb, M. (1990). Social support by many other names: Towards a unified
conceptualization. Journal of Social and Personal Relationship, 7, 479-494.
Newman, M. (1986). Health as expanding consciousness. St. Louis: C.V. Mosby.
Newman, M., Sime, A. M., & Corcoran-Perry, S. A. (1991). The focus of the
discipline of nursing. Advances in Nursing Science, 14(1), 1-6.
Newton, T. (1995). Managing stress: Emotion and power at work. London: Sage.
NIH Guide. (2000). Pediatric disease clinical research network. Retrieved
October,11
210
Nixon-Speechley, K., & Noh, S. (1992). Surviving childhood cancer, social support,
and parents' psychological adjustment. Journal of pediatric psychology, 17,
15-31.
Noyes, J. (1998). A critique of studies exploring the experiences and needs of parents
of children admitted to pediatric intensive care units. Journal of Advanced
Nursing, 28(1), 134-141.
Noyes, J. (1999). The impact of knowing your child is critically ill: a qualitative study
of mothers' experiences. Journal of Advanced Nursing, 29(2), 427-435.
Oates, R. K., Turnbull, J. A., Simpson, J. M., & Cartmill, T. B. (1994). Parent and
teacher perceptions of child behavior following cardiac surgery. Acta
Pediatrica, 83(12), 1303-1307.
Olson, D. H., Sprenkle, D. H., & Russell, C. S. (1979). Circumplex model of marital
and family system: I. Cohesion and adaptability dimensions, family types, and
clinical applications. Family Process, 18(1), 3-28.
Patterson, J. M. (1988). Families experiencing stress. Family System Medicine, 6,
202-237.
Patterson, J. M., & Garwick, A. W. (1994). Levels of meaning in family stress theory.
Family Process, 33(3), 287-304.
Patterson, J. M., & McCubbin, H. I. (1987). Adolescent coping style and behaviors:
conceptualization and measurement. Journal of Adolescent, 10(2), 163-186.
Patterson, J. M., McCubbin, H. I., & Warwick, W. J. (1990). The impact of family
functioning on health changes in children with cystic fibrosis. Social Science
& Medicine, 31(2), 159-164.
211
Paul, K. (1995). Recognition, stabilization, and early management of infants with
critical congenital heart disease presenting in the first days of life. Neonatal
Network, 14, 13-20.
Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journal of Health &
Social Behavior, 19(1), 2-21.
Pedhazur, E. J. (1992). Multiple regression in behavioral research (2nd ed.).
Chicago: Holt Rinehart, and Winston, Inc.
Pedhazur, E. J., & Schooler, C. (1991). Measurement, design, and analysis; An
integrated Approach. New Jersey: Hillsdale.
Pelchat, D., Ricard, N., Bouchard, J. M., Perreault, M., Saucier, J. F., & Berrthiaume,
M. (1999). Adaptation of parents in relation to their 6-month old infant's type
of disability. Child Health and development, 25(377-397).
Pengilly, J. W., & Dowd, E. T. (2000). Hardiness and social support as moderators of
stress. Journal of Clinical Psychology, 56(6), 813-820.
Perrin, E. C., & Shapiro, E. (1985). Health locus of control beliefs of healthy
children, children with a chronic physical illness, and their mothers. Journal
of Pediatric, 107(4), 627-633.
Perrin, N. (1985). The diabetic child and insulin therapy at home (insulin therapy via
portable pump. Soins Gynecologie Obstetrique Puericulture Pediatrie (5152), 23-26.
Peterson, L. C. (1984). Attribution theory and its application in crisis intervention.
Perspectives in Psychiatric Care, 22(4), 133-136.
212
Philichi, L. M. (1989). Family adaptation during a pediatric intensive care
hospitalization. Journal of Pediatric Nursing, 4(4), 268-276.
Phipps, S., & Drotar, D. (1990). Determinants of parenting stress in home apnea
monitoring. Journal of Pediatric Psychology, 15(3), 385-399.
Pierce, G. R., Sarason, B. R., & Sarason, I. G. (1992). General and specific support
expectations and stress as predictors of perceived supportiveness: an
experimental study. Journal of personality and Social Psychology, 63(2), 297307.
Pierce, G. R., Sarason, I. G., & Sarason, B. R. (1991). General and relationship-based
perceptions of social support: are two constructs better than one? Journal of
personality and Social Psychology, 61(6), 1028-1039.
Pinelli, J. (1997). The effects of family coping and family resources on family
adjustment and parental stress in the acute phase of the neonatal intensive
care experience. The state University of New York, New York.
Polit, D. F. (1996). Data analysis & statistics for nursing research. New York:
Appleton & Lange.
Polit, D. F., & Hungler, B. P. (1999). Nursing research: Principles and methods.
Philadelphia: J.B. Lippincott Company.
Polit, D. F., & Sherman, R. (1990). Statistical power in nursing research. Nursing
Research, 39, 365-369.
Pollack, M. M., Cuerdon, T. C., & Getson, P. R. (1993). Pediatric intensive care
units: results of a national survey. Critical Care Medicine, 21(4), 607-614.
213
Porth, C. M. (2002). Pathophysiology concepts of altered health status (6 ed.).
Philadelphia: Lippincott Williams and Willims.
Pot, A. M., Deeg, D. J., & van Dyck, R. (2000). Psychological distress of caregivers:
moderator effects of caregiver resources? Patient Education Counseling,
41(2), 235-240.
Powers, G. M., Gaudet, L. M., & Powers, S. (1986). Coping patterns of parents of
chronically ill children. Psychol Rep, 59(2 Pt 1), 519-522.
Ptacek, J. T., & Pierce, G. (2003). Issues in the study of stress and coping in
rehabilitation settings. Rehabilitation Psychiatry, 48(2), 113-124.
Purcell, C. (1996). Preparation of school-age children and their parents for intensive
care following cardiac surgery. Intensive and critical Care Nursing, 218-225.
Quittner, A. L., Glueckauf, R. L., & Jackson, D. N. (1990). Chronic parenting stress:
moderating versus mediating effects of social support. Journal of Personality
and Social Psychology, 59(6), 1266-1278.
Quittner, A. L., Glueckauf, R. L., & Jackson, D. N. (1990). Chronic parenting stress:
moderating versus mediating effects of social support. Journal of Personality
and Social Psychology, 59(6), 1266-1278.
Raffensberger, D. (1991). Meeting the coping needs of parents who have children in
the pediatric intensive care unit. Heart Lung, 20(2), 211.
Ray, L. D., & Ritchie, J. A. (1993). Caring for chronically ill children at home:
factors that influence parents' coping. Journal of Pediatric Nursing, 8(4), 217225.
214
Reider, J. A. (1989). The relationship of family needs satisfaction and family coping
strategies to family adjustment during the critical illness of a family member.
Unpublished doctoral thesis, The Ctholic University of America, Washington,
D.C.
Reider, J. A. (1989). The relationship of family needs satisfaction and family coping
strategies to family adjustment during the critical illness of a family member.
Unpublished doctoral dissertation, The Catholic University of America,
Washington, D. C.
Rhiner, M., Ferrell, B. R., Shapiro, B., & Dierkes, M. (1994). The experience of
pediatric cancer pain, Part II: Management of pain. Journal of Pediatric
Nursing, 9(6), 380-387.
Riddle, I. I., Hennesy, J., Eberly, T. W., Carter, M. C., & Miles, M. S. (1989).
Stressors in the pediatric intensive care unit as perceived by mothers and
fathers. Maternal & Child Nursing Journal, 18, 221-234.
Rivara, J. B., Fay, G. C., Jaffe, K. M., Polissar, N. L., Shurtleff, H. A., & Martin, K.
M. (1992). Predictors of family functioning one year following traumatic
brain injury in children. Archives of Physical Medicine and Rehabilitation,
73(10), 899-910.
Rodrigue, J. R., MacNaughton, K., Hoffmann, R. G., 3rd, Graham-Pole, J., Andres, J.
M., Novak, D. A., et al. (1997). Transplantation in children. A longitudinal
assessment of mothers' stress, coping, and perceptions of family functioning.
Psychosomatics, 38(5), 478-486.
215
Rogers, T. R., Forehand, R., Furey, W., Baskin, C., Finch, A. J., Jr., & Jordan, S.
(1984). Heart surgery in infants: a preliminary assessment of maternal
adaptation. Child Health Care, 13(2), 52-58.
Rook, K. S. (1984). The negative side of social interaction: impact on psychological
well-being. J Pers Soc Psychol, 46(5), 1097-1108.
Roos, P. E., & Cohen, L. H. (1987). Sex roles and social support as moderators of life
stress adjustment. Journal of Personality and Social Psychology, 52(3), 576585.
Rosenthal, E. T., Biesecker, L. G., & Biesecker, B. B. (2001). Parental attitudes
toward a diagnosis in children with unidentified multiple congenital anomaly
syndromes. American Journal of Medical Genetics, 103(2), 106-114.
Rossiter, J. P., & Callan, N. A. (1993). Prenatal diagnosis of congenital heart disease.
Obstetric, Gynecology Clinic of North America, 20(3), 485-496.
Roy, C. (1984). Introduction to nursing: An adaptation model (2nd ed.). Englewood
Cliffs, NI: Prentice-Hall.
Roy, S. C. (1980). The Roy adaptation model. In J. Riehl & S. Roy (Eds.),
Conceptual Models for Nursing Practice. Norwalk: Conn: Appleton- Century
Crofts.
Ryan, M. C., & Austin, A. G. (1989). Social supports and social networks in the aged.
Image the Journal of Nursing Scholarship, 21(3), 176-180.
Sabbeth, B. F., & Leventhal, J. M. (1984). Marital adjustment to chronic childhood
illness: a critique of the literature. Pediatrics, 73(6), 762-768.
216
Saenz, R. B., Beebe, D. K., & Triplett, L. C. (1999). Caring for infants with
congenital heart disease and their families. American Family Physician, 59(7),
1857-1868.
Sarason, B. R., Sarason, G. R., & Pierce, G. R. (1990). Social support: An
interactional view (Vol. John Wiley & Sons). New York.
Sarason, I., Sarason, B., & Pierce, G. R. (1990). Social support: the search for theory.
Journal of Social & Clinical Psychology, 9, 133.
Sassolas, F., Akhavi, A., Mestrallet, C., Raboisson, M. J., Di Filippo, S., Bozio, A., et
al. (2003). Genetics and congenital heart diseases. Archives des maladies du
coeur et des vaisseaux, 96(11), 1033-1041.
Sawin, K. J., & Harrigan, M. (1994). Measures of family functioning for research and
practice. Scholarly Inquiry for Nursing Practice: An international journal,
8(1), 5-142.
Sawyer, M., Antoniou, G., Toogood, I., & Rice, M. (1997). Childhood cancer: a twoyear prospective study of the psychological adjustment of children and
parents. Journal of American Academic Child & Adolescent Psychiatry,
36(12), 1736-1743.
Schrey , C., & Schrey , M. (1994). A parents perspective: our needs and our message:
The experience and wisdom of two parents who have a child with a congenital
cardiac defect. Critical Care Nursing Clinics of North America, 6(1), 113-119.
Schulz, R., & Williamson, G. M. (1991). A 2-year longitudinal study of depression
among Alzheimer's caregivers. Psychology and Aging, 6(4), 569-578.
217
Schuster, T. L., Kessler, R. C., & Aseltine, R. H., Jr. (1990). Supportive interactions,
negative interactions, and depressed mood. American Journal of Community
Psychology, 18(3), 423-438.
Schwab, J. (1964). Structure of the discipline: Meanings and significances. In G. W.
Ford & L. Pungo (Eds.), The structure of knowledge and the curriculum.
Chicago: Rand McNally.
Seligman, M., & Darling, R. B. (1989). Ordinary families special children: A systems
approach to childhood disability. NY: The Guilford Press.
Selye, H. (1976). [Stress without distress]. Bruxelles Medical, 56(5), 205-210.
Selye, H. (1976). Forty years of stress research: principal remaining problems and
misconceptions. Candian Medical Association Journal, 115(1), 53-56.
Selye, H. (1976). Further thoughts on "stress without distress". Medical Times,
104(11), 124-144.
Selye, H. (1993). History of stress concept. In L. Goldberger & S. Breznitz (Eds.),
Handbook of stress: Theoretical and clinical aspects. New York: The Free
Press.
Shields, L., Kristensson-Hallstrom, I., & O'Callaghan, M. (2003). An examination of
the needs of parents of hospitalized children: comparing parents' and staff's
perceptions. Scand J Caring Sci, 17(2), 176-184.
Sholomskas, D. E., Steil, J. M., & Plummer, J. K. (1990). The spinal cord injury
revised: the relationship between self-blame, other blame and coping. Journal
of Applied Social Psychology, 1094(20), 548-574.
218
Silove, E. D. (1994). Assessment and management of congenital heart disease in the
newborn by the district pediatrician. Archives of Disease in Childhood, Fetal
& Neonatal Edition, 70(1), F71-74.
Smith, J. (2003). Stress and aging: theoretical and empirical challenges for
interdisciplinary research. Neurobiology of Aging, 24 Supplement 1, S77-80;
discussion S81-72.
Snowdon, A. W., Cameron, S., & Dunham, K. (1994). Relationships between stress,
coping resources, and satisfaction with family functioning in families of
children with disabilities. The Canadian Journal of Nursing Research, 26(3),
63-76.
Soetenga, D., & Mussatto, K. A. (2004). Management of infants with hypoplastic left
heart syndrome integrating research in Nursing practice. Critical Care Nurse,
24(6), 46-48, 50, 52 passim.
Soliday, E., Kool, E., & Lande, M. B. (2001). Family environment, child behavior,
and medical indicators in children with kidney disease. Child Psychiatry Hum
Dev, 31(4), 279-295.
Sparacino, P. S., Tong, E. M., Messias, D. K., Foote, D., Chesla, C. A., & Gilliss, C.
L. (1997). The dilemmas of parents of adolescents and young adults with
congenital heart disease. Heart and Lung, 26(3), 187-195.
Speechley, K. N., & Noh, S. (1992). Surviving childhood cancer, social support, and
parents' psychological adjustment. Journal of pediatric psychology, 17(1), 1531.
219
Speechley, K. N., & Noh, S. (1992). Surviving childhood cancer, social support, and
parents' psychological adjustment. Journal of pediatric psychology, 17(1), 1531.
Stein, R. E. (1992). Chronic physical disorders. Pediatrics in Review, 13(6), 224-230.
Stevens, J. (2002). Applied multivariate statistics for the social sciences (Vol.
Lawrence Erlbaum). Hillsdale.
Stokes, J. P., & Wilson, D. G. (1984). The inventory of socially supportive behaviors:
dimensionality, prediction, and gender differences. American Journal of
Community Psychology, 12(1), 53-69.
Strauss, S. S., & Munton, M. (1985). Common concerns of parents with disabled
children. Pediatric Nursing, 11(5), 371-375.
Synder, B. S. (2004). Preventing treatment interference: Nurses' and parents'
intervention strategies. Pediatric Nursing, 30(1), 31-40.
Svavarsdottir, E. K., & McCubbin, M. (1996). Parenthood transition for parents of an
infant diagnosed with a congenital heart condition. Journal of Pediatric
Nursing, 11(4), 207-216.
Svavarsdottir, E. K., & McCubbin, M. (1996). Parenthood transition for parents of an
infant diagnosed with a congenital heart condition. Journal of Pediatric
Nursing, 11(4), 207-216.
Svavarsdottir, E. K., McCubbin, M. A., & Kane, J. H. (2000). Well-being of parents
of young children with asthma. Research in Nursing & Health, 23(5), 346358.
220
Tabachick, B. G., & Fidell, L. S. (2000). Using multivariate statistics (3rd ed.). New
York: Happer Collins Publishers.
Tak, Y. R. (1994). Family stress, perceived social support, and coping of family who
has a child with chronic illness. Unpublished Doctoral thesis, University of
Wisconsin, Madison.
Tak, Y. R., & McCubbin, M. (2002). Family stress, perceived social support and
coping following the diagnosis of a child's congenital heart disease. Journal of
Advanced Nursing, 39(2), 190-198.
Tennen, H., & Affleck, G. (1990). Blaming others for threatening events.
Psychological Bulletin, 108, 209-232.
Thoits, P. A. (1995). Stress, coping, and social support processes: where are we?
What next? Journal of health and social behavior, Spec No, 53-79.
Thompson, R. J., Jr., Gil, K. M., Gustafson, K. E., George, L. K., Keith, B. R., Spock,
A., et al. (1994). Stability and change in the psychological adjustment of
mothers of children and adolescents with cystic fibrosis and sickle cell
disease. Journal of pediatric psychology, 19(2), 171-188.
Thompson, R. J., Jr., Gil, K. M., Keith, B. R., Gustafson, K. E., George, L. K., &
Kinney, T. R. (1994). Psychological adjustment of children with sickle cell
disease: stability and change over a 10-month period. Journal of Consulting &
Clinical Psychology, 62(4), 856-856.
Thompson, R. J., Jr., Gil, K. M., Keith, B. R., Gustafson, K. E., George, L. K., &
Kinney, T. R. (1994). Psychological adjustment of children with sickle cell
221
disease: stability and change over a 10-month period. Journal of Consulting &
Clinical Psychology,, 62(4), 856-856.
Tichy, A. M., Braam, C. M., Meyer, T. A., & Rattan, N. S. (1988). Stressors in
pediatric intensive care units. Pediatric Nursing, 14(1), 40-42.
Tilden, V. P. (1985). Issues of conceptualization and measurement of social support
in the construction of nursing theory. Research in nursing & Health, 8(2),
199-206.
Tilden, V. P., & Galyen, R. D. (1987). Cost and conflict. The darker side of social
support. Western Journal of Nursing Research, 9(1), 9-18.
Tomlinson, P. S., & Mitchell, K. E. (1992). On the nature of social support for
families of critically ill children. Journal of Pediatric Nursing, 7(6), 386-394.
Tomlinson, P. S., Harbaugh, B. L., Kotchevar, J., & Swanson, L. (1995). Caregiver
mental health and family health outcomes following critical hospitalization of
a child. Issues in Mental Health Nursing, 16(6), 533-545.
Tomlinson, P. S., Kirschbaum, M., Harbaugh, B., & Anderson, K. H. (1996). The
influence of illness severity and family resources on maternal uncertainty
during critical pediatric hospitalization. American journal of critical care,
5(2), 140-146.
Turner, J. L. (1998). Children with chronic illness. Medical Update for Psychiatrists,
3(2), 45-48.
Turner, M. A., Tomlinson, P. S., & Harbaugh, B. L. (1990). Parental uncertainty in
critical care hospitalization of children. Maternal Child Nursing Journal,
19(1), 45-62.
222
Unger, D. G., & Powell, D. R. (1980). Supporting families under stress: The role of
social networks. Family relationships, 29, 566-574.
Utens, E. M., Bieman, H. J., Verhulst, F. C., Meijboom, F. J., Erdman, R. A., & Hess,
J. (1998). Psychopathology in young adults with congenital heart disease.
Follow-up results. European Heart Journal, 19(4), 647-651.
Utens, E. M., Verhulst, F. C., Duivenvoorden, H. J., Meijboom, F. J., Erdman, R. A.,
& Hess, J. (1998). Prediction of behavioral and emotional problems in
children and adolescents with operated congenital heart disease. European
Heart Journal, 19(5), 801-807.
Utens, E. M., Verhulst, F. C., Erdman, R. A., Meijboom, F. J., Duivenvoorden, H. J.,
Bos, E., et al. (1994). Psychosocial functioning of young adults after surgical
correction for congenital heart disease in childhood: a follow-up study.
Journal of Psychosomatic Research, 38(7), 745-758.
Utens, E. M., Verhulst, F. C., Meijboom, F. J., Duivenvoorden, H. J., Erdman, R. A.,
Bos, E., et al. (1993). Behavioral and emotional problems in children and
adolescents with congenital heart disease. Psychology and Medicine, 23(2),
415-424.
Utens, E. M., Versluis-Den Bieman, H. J., Verhulst, F. C., Witsenburg, M., Bogers,
A. J., & Hess, J. (2000). Psychological distress and styles of coping in parents
of children awaiting elective cardiac surgery. Cardiology in the Young, 10(3),
239-244.
Utens, E. M., Versluis-Den Bieman, H. J., Witsenburg, M., Bogers, A. J., Hess, J., &
Verhulst, F. C. (2002). Does age at the time of elective cardiac surgery or
223
catheter intervention in children influence the longitudinal development of
psychological distress and styles of coping of parents? Cardiology in the
Young, 12(6), 524-530.
Utens, E. M., Versluis-Den Bieman, H. J., Witsenburg, M., Bogers, A. J., Verhulst, F.
C., & Hess, J. (2001). Cognitive, and behavioural and emotional functioning
of young children awaiting elective cardiac surgery or catheter intervention.
Cardiology in the Young, 11(2), 153-160.
Uzark, K. (1992). Caring for families of pediatric transplant recipients: psychosocial
implications. Critical Care Nursing Clinics of North America, 4(2), 255-261.
Uzark, K. (1992). Counseling adolescents with congenital heart disease. Journal of
Cardiovascular Nursing, 6(3), 65-73.
Uzark, K. C., Sauer, S. N., Lawrence, K. S., Miller, J., Addonizio, L., & Crowley, D.
C. (1992). The psychosocial impact of pediatric heart transplantation. The
Journal of Heart and Lung Transplantation, 11(6), 1160-1167.
Uzark, K., & Jones, K. (2003). Parenting stress and children with heart disease.
Journal of Pediatric Health Care, 17(4), 163-168.
Van Riper, M. (2001). Factors influencing family function and the health of family
members. In S. M. H. Hanson (Ed.), Family health care Nursing : Theory,
practice and research (pp. 122-145). Philadelphia: F.A Davis.
Van Vugh, A. J., Sreeran, N., Schroder, C. H., & De vries, J. W. (2000). The pediatric
challenge of heart surgery. Intensivemedizin and Notfallmedizin, 37(1), 19-30.
Vaux, A. (1987). Appraisals of social support: Love, respect, and involvement.
Journal of Community Psychology, 15, 493-502.
224
Venters, M. (1981). Familial coping with chronic and severe childhood illness: the
case of cystic fibrosis. Social Science ad Medicine [A], 15(3 Pt 1), 289-297.
Visconti, K. (2000). The influence of parental stress and social support on the
behavioral adjustment of children with Transposition of the great arteries.
Unpublished Doctoral, Boston University, Boston.
Vonbertalanffy, L. (1968). General system theory. New York: George Braziller Press.
Walsh, F. (2003). Family resilience: a framework for clinical practice. Family
Process, 42(1), 1-18.
Waldhausen, J. (1997). The early history of congenital heart surgery: Closed heart
operations. The Annals of Thoracic Surgery, 64, 1533-1539.
Walker, L. O., & Best, M. A. (1991). Well-being of mothers with infant children: a
preliminary comparison of employed women and homemakers. Women
Health, 17(1), 71-89.
Wasilewski, Y., Clark, N., Evans, D., Feldman, C. H., Kaplan, D., Rips, J., et al.
(1988). The effect of paternal social support on maternal disruption caused by
childhood asthma. Journal of Community Health, 13(1), 33-42.
Webster-Stratton, C. (1988). Mothers' and fathers' perceptions of child deviance: roles
of parent and child behaviors and parent adjustment. Journal of Consulting
and Clinical Psychology, 56(6), 909-915.
Webster-Stratton, C., & Hammond, M. (1988). Maternal depression and its
relationship to life stress, perceptions of child behavior problems, parenting
behaviors, and child conduct problems. Journal of Abnormal Child
Psychology, 16(3), 299-315.
225
Webster-Stratton, C., Kolpacoff, M., & Hollinsworth, T. (1988). Self-administered
videotape therapy for families with conduct-problem children: comparison
with two cost-effective treatments and a control group. Journal of Consulting
& Clinical Psychology, 56(4), 558-566.
Welcher, T. (1997). Factors influencing family adaptation in families of deaf
children. University of Nebraska, Omaha.
Weinert, C., & Brandt, P. A. (1987). Measuring social support with the Personal
Resource Questionnaire. Western Journal of Nursing Research, 9(4), 589602.
Weinberg, S. L., & Richardson, M. S. (1981). Dimensions of stress in early parenting.
Journal of Consulting and Clinical Psychology, 49(5), 686-693.
Wereszczak, J., Miles, M. S., & Holditch-Davis, D. (1997). Maternal recall of the
neonatal intensive care unit. Neonatal Network, 16(4), 33-40.
Werner, J. (1996). Neonatal screening for congenital heart disease. Infants children,
4, 5-7.
Whall, A., & Fawcett, J. (1991). The family as a focal phenomenon in nursing. In A.
Whall & J. Fawcett (Eds.), Family theory development in nursing: State of the
science and art (pp. 7-29).
Wilcox, B. L., & Vernberg, E. M. (1985). Conceptual and theoretical dilemmas
facing social support. In G.Sarason & B. R. Sarason (Eds.), Social support:
Theory, research and applications (pp. 3-20). Boston: Martinus Nijhoff.
Woods, N. F., & Catanzaro, M. (1988). Nursing research theory and practice. St.
Lois: C.V. Mosby.
226
Wray, J., & Maynard, L. (2006). The needs of families of children with heart disease.
Journal of Developmental and Behavioral Pediatrics, 27(1), 11
Wray, J., & Sensky, T. (1998). How does the intervention of cardiac surgery affect
the self-perception of children with congenital heart disease? Child Care
Health Dev, 24(1), 57-72.
Wray, J., & Sensky, T. (1999). Controlled study of preschool development after
surgery for congenital heart disease. Archive of Disease of Child, 80(6), 511516.
Wray, J., & Sensky, T. (2001). Congenital heart disease and cardiac surgery in
childhood: effects on cognitive function and academic ability. Heart, 85(6),
687-691.
Wray, J., & Sensky, T. (2004). Psychological functioning in parents of children
undergoing elective cardiac surgery. Cardiology in the Young, 14(2), 131-139.
Youngblut, J. M., & Brooten, D. (2005). Pediatric Head Trauma: Parent, ParentChild, and Family Functioning 2 Weeks After Hospital Discharge. Journal of
Pediatric Psychology online Available at:
http://jpepsy.oxfordjournals.org/cgi/content/abstract/jsj066v1.
Youngblut, J. M., & Jay, S. S. (1991). Emergent admission to the pediatric intensive
care unit: parental concern. AACN Clinical Issues in Critical Care Nursing,
2(2), 329-337.
Youngblut, J. M., & Lauzon, S. (1995). Family functioning following pediatric
intensive care unit hospitalization. Issues in Comprehensive Pediatric
Nursing, 18(1), 11-25.
227
Youngblut, J. M., & Shiao, S. Y. P. (1993). child and family reactions during
following pediatric ICU hospitalization: A pilot study. Heart and Lung, 22,
46-50.
Youngblut, J. M., & ShiaoS.Y.P. (1992). Characteristics of a child’s critical illness
and parents' reactions. Preliminary report of a pilot study. American Journal
of Critical Care, 1(3), 80-84.
Youngblut, J. M., Brooten, D., & Kuluz, J. (2005). Parents' reactions at 24-48 hrs
after a preschool child's head injury. Pediatric and Critical Care Medicine,
6(5), 550-556.
Youngblut, J. M., Loveland-Cherry, C. J., & Horan, M. (1990). Data management
issues in longitudinal research. Nursing Research, 39(3), 188-189.
Youngblut, J. M., Loveland-Cherry, C. J., & Horan, M. (1990). Factors related to
maternal employment status following the premature birth of an infant.
Nursing Research, 39(4), 237-240.
Youngblut, J. M., Loveland-Cherry, C. J., & Horan, M. (1991). Maternal employment
effects on family and preterm infants at three months. Nursing Research,
40(5), 272-275.
Youngblut, J. M., Loveland-Cherry, C. J., & Horan, M. (1993). Maternal
employment, family functioning, and preterm infant development at 9 and 12
months. Research in Nursing & Health, 16(1), 33-43.
Youngblut, J. M., Loveland-Cherry, C. J., & Horan, M. (1994). Maternal employment
effects on families and preterm infants at 18 months. Nursing Research,
43(6), 331-337.