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This is to certify that the
dissertation entitled
Adjustment to Diabetes: A Family Perspective

presented by

Alison Ward

has been accepted towards fulﬁllment
of the requirements for

Ph.D. degree in Clinical Psychology

 

 

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11/00 c2/CIRC/DateDua.p65-pi14

 

ADIUSTMENT TO DIABETES: A FAMILY PERSPECTIVE
By

Alison Ward

A DISSERTATION

Submitted to
Michigan State University
in partial ﬁilﬁllment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY
Department of Psychology

2000

ABSTRACT
ADJUSTMENT TO DIABETES: A FAMILY PERSPECTIVE
By
Alison Ward
This study examined psychosocial factors that affect the adjustment of families to
diabetes (N=105 families; 103 mothers, 35 fathers, 107 children). Speciﬁcally, the
effects of family functioning (cohesion, expressiveness, control), coping strategies
(approach, avoidance), and illness-related concerns or demands on parental depression
and anxiety as well as child psychological well-being and metabolic control were
examined. Self—report inventories and HbA1C values were used to measure the research
variables. Results indicated that maternal depression was signiﬁcantly related to
cohesion (r=-0.42, p<.01), expressiveness (1=-0.48, p<.01), conﬂict (r=0.28, p<.01),
approach (r=-O.44, p<.01), avoidance (r=0.48, p<.01), and illness-related concerns or
demands (1:053, p<.01). Maternal anxiety was also signiﬁcantly related to cohesion
(r=-0.44, p<.01), expressiveness (r=-0.55, p<.01), conﬂict (r=0.46, p<.01), approach
(1=-O.49, p<.01), avoidance (1:061, p<.01), and illness-related concerns or demands
(r=0.44, p<.01). Paternal depression was signiﬁcantly related to avoidance (r=0.5 3,
p<.01) and illness-related concerns or demands (r=0.40, p<.01). Paternal anxiety was
also signiﬁcantly related to avoidance (1:038, p<.05) and illness-related concerns or
demands (1:049, p<.01). Children’s psychological well-being was signiﬁcantly related
to mothers’ report of cohesion (r=—0.31, p<.01), conﬂict (r=0.24, p<.05), and illness-

related concerns or demands (r=0.44, p<.01) and fathers’ report of expressiveness

(r=-O.66, p<.01) and illness-related concerns or demands (r=0.32, p<.05). Metabolic
control was related to mothers’ report of conﬂict (r=.23, p<.05). Further analyses
revealed illness-related concerns or demands as being a possible mediating variable.
Based on results of paternal adjustment, further research is needed to examine differences
between maternal and paternal experiences and perceptions of having a child with

diabetes.

For my parents.

iv

 

ACKNOWLEDGEMENTS

Thank you to my friends, family, committee members, and colleagues who
supported and guided me through this long process. To you, I am indebted.

Thank you to Tom Reischl, Ph.D. who agreed to be my chairperson when others
were not able to and continued to work with me even after he left M.S.U. Your patience,
fairness, and genuine interest never went unappreciated.

Finally, thank you to the children and parents of this study who shared with me
their experiences so that others adjusting to diabetes may be helped. Your courage and

fortitude is an inspiration.

TABLE OF CONTENTS

LIST OF TABLES ..................................................................................................... viii
INTRODUCTION ..................................................................................................... 1
Family Functioning .......................................................................................... 7
Children’s Adjustment .......................................................................... 7
Parental Adjustment ............................................................................. 13
Parental Coping Strategies .............................................................................. 15
Role of Stress ................................................................................................... 20
Mediation Models ............................................................................................ 22
Rationale for Study .......................................................................................... 22
Hypotheses ....................................................................................................... 25
METHOD .................................................................................................................. 34
Procedures ........................................................................................................ 34
Participants ....................................................................................................... 35
Measures .......................................................................................................... 39
Demographics ........................................................................................ 39
Family Environment Scale ..................................................................... 39
COPE - modiﬁed .................................................................................... 39
Impact on the Family Scale .................................................................... 45
Center for Epidemiologic Studies — Depression Scale .......................... 45
State Trait Anxiety Inventory — Trait Anxiety ....................................... 50
Child Behavior Checklist ....................................................................... 52
HbA1C values .......................................................................................... 54
Data Analyses ................................................................................................. 61
RESULTS .................................................................................................................. 62
DISCUSSION ............................................................................................................ 84
APPENDICES
Appendix A: MSU UCRIHS approval letter .................................................. 98
Appendix B: Bronson Methodist Hospital/KCMS IRB approval letter ......... 99
Appendix C: CCRS IRB approval letter ......................................................... 100
Appendix D: Sample letter sent to parents ........................................ 101
Appendix E: Study description given to parents over telephone .................... 102
Appendix F: Cover letter sent with questionnaires to parents ........................ 104
Appendix G: Consent form for parents from MSU ........................................ 105
Appendix H: Consent form for parents from KCMS ..................................... 107
Appendix I: Consent form for parents from CCRS ...................................... 111
Appendix J: Demographic questionnaire ...................................................... 113
Appendix K: Family Environment Scale ........................................................ 114
Appendix L: COPE — modiﬁed ...................................................................... 118
Appendix M: Impact on the Family Scale ...................................................... 121

vi

 

Appendix N: Center for Epidemiologic Studies — Depression Scale ............. 123

Appendix 0: State Trait Anxiety Inventory — Trait Anxiety .......................... 125

Appendix P: Child Behavior Checklist .......................................................... 127

LIST OF REFERENCES ........................................................................................... 133
vii

 

Table 1:
Table 2:
Table 3:
Table 4:
Table 5:
Table 6:
Table 7:
Table 8:
Table 9:

Table 10:
Table 11:
Table 12:
Table 13:
Table 14:
Table 15:
Table 16:
Table 17:

Table 18:
Table 19:

Table 20:

Table 21:

Table 22:

Table 23:

Table 24:

Table 25:

Table 26:

Table 27:

LIST OF TABLES

Hypotheses and Data Analyses ................................................................. 30
Parents’ Demographics .............................................................................. 36
Frequency Distribution of Age .................................................................. 38
Frequency Distribution of Illness Duration ............................................... 38
Psychometric Properties of the Cohesion Scale ........................................ 40
Psychometric Properties of the Expressiveness Scale .............................. 41
Psychometric Properties of the Conﬂict Scale .......................................... 42
Principal Axis Factor Analysis .................................................................. 44
Psychometric Properties of the Approach Scale ....................................... 46
Psychometric Properties of the Avoidance Scale ...................................... 47
Psychometric Properties of the Impact on the Family Scale ..................... 48
Psychometric Properties of the CBS-D ..................................................... 51
Psychometric Properties of the State Trait Anxiety Inventory —

Trait Anxiety ............................................................................................. 53
Psychometric Properties of the Child Behavior Checklist ........................ 55
Pearson Correlations for Psychosocial Factors (Mothers’ Data) ............... 63
Pearson Correlations for Psychosocial Factors (Fathers’ Data) ................ 64
Pearson Correlations for Psychosocial Factors and Parents’ Psychological
Well-Being ................................................................................................ 65
Fisher’s Z Coefﬁcients for Comparisons Between Mothers and Fathers..66

Pearson Correlations for Psychosocial Factors and Children’s Psychological
Well-Being and Metabolic Control ........................................................... 69
Pearson Correlations Using Pre-Test HbA1C Values and Post-Test HbA1C
Values Based on Mothers’ Report ............................................................. 72
Partial Correlation Coefﬁcients Controlling for Pre-T est HbAlc Values..73
Standardized Regression Coefﬁcients for Family Cohesion as a Mediator of
Illness-Related Concerns or Demands and Maternal Psychological Well-
Being ......................................................................................................... 75
Standardized Regression Coefﬁcients for Family Expressiveness as a
Mediator of Illness-Related Concerns or Demands and Maternal
Psychological Well-Being ......................................................................... 76
Standardized Regression Coefﬁcients for Family Conﬂict as a Mediator of
Illness-Related Concerns or Demands and Maternal Psychological Well-
Being ......................................................................................................... 77
Standardized Regression Coefﬁcients for Approach Coping as a Mediator of
Illness-Related Concerns or Demands and Maternal Psychological Well-
Being ......................................................................................................... 78
Standardized Regression Coefﬁcients for Avoidance Coping as a Mediator of
Illness-Related Concerns or Demands and Maternal Psychological Well-
Being ......................................................................................................... 79
Standardized Regression Coefﬁcients for Family Cohesion as a Mediator of
Illness-Related Concerns or Demands and Children’s Psychological Well-
Being (Mothers’ Report) ........................................................................... 81

viii

 

 

Table 28: Standardized Regression Coefﬁcients for Family Conﬂict as a Mediator of
Illness-Related Concerns or Demands and Children’s Psychological Well-

Being ( Mothers’ Report) ........................................................................... 82
Table 29: Correlation Coefﬁcients for Children’s Age, Illness-Duration, Predictor
Variables, and Outcome Variables ............................................................ 83
ix

 

INTRODUCTION

It is estimated that up to 31% of children under the age of 18 are affected by
chronic health conditions of varying severity (Adams & Benson, 1989 as cited in Perrin
et al., 1993; Newacheck & Taylor, 1992). Chronic health conditions refer to illnesses,
impairments, disabilities or other abnormal health manifestations (Stein, Bauman,
Westbrook, Coupey, & Ireys, 1993). Children experience a wide range of conditions
such as asthma, cerebral palsy, cystic ﬁbrosis, phenylketonuria, sickle-cell disease, and
spina biﬁda (Eiser, 1993; Thompson & Gustafson, 1996). Although these conditions are
characterized by their own unique features, they share common features as well. For
example, the etiology of chronic health conditions are biologically-based, their duration is
three months or more, they require ongoing medical attention, they limit the child’s daily
functioning and activities, they restrict the child’s physical growth and development, they
may present behavioral, emotional, and social problems for the child as well as. disrupt
normal family functioning (Perrin et al., 1993; Stein, Bauman, Westbrook, Coupey, &
Ireys, 1993). But what are the psychosocial factors that put these patients and their
families at risk for continual problems with adj ustment? Similarly, how can mental
health professionals identify those who may be in need of help?

One type of chronic childhood health condition is insulin-dependent diabetes
mellitus (IDDM) or Type I diabetes. Diabetes is characterized by abnormalities in
glucose metabolism. It is caused by a combination of genetic and autoimmunological
processes which destroy the pancreatic beta cells needed to produce insulin. Insulin is a
hormone necessary for glucose utilization and storage. When the balance between

glucose and insulin in the bloodstream (known as metabolic control) is not regulated

properly, short- and long-term complications result. Short-term complications include
hyperglycemia or hypoglycemia both which can result in seizures or coma followed by
death if emergency medical intervention is not administered. Long-term complications of
diabetes include cardiovascular disease, neurOpathy, retinopathy, nephropathy, infections
and the subsequent complications related to these conditions including shortened life
expectancy (American Diabetes Association (ADA), 1996; Cox & Gonder-Frederick,
1992; Kovacs, Iyengar, Goldston, Obrosky, Stewart, & Marsh, 1990; Martin, Miller-
Johnson, Kitzmann, & Emery, 1998; Peyrot, McMurry, & Kruger, 1999; Sills, 1985).

In order to manage diabetes, glucose in the blood and urine must be routinely
monitored and daily injections of insulin must be administered to maintain metabolic
control. Additionally, speciﬁc dietary rules need to be observed and meals and snacks
need to be scheduled and planned ahead of time. The amount of physical activity
expended by the diabetic needs to be monitored and regular medical visits are required as
well. And all of these precautions must be performed for the remainder of the person’s
life. Yet, despite the fact that great care may be taken to ensure proper metabolic control,
diabetes can be a precarious condition with blood glucose levels rising or falling for a
variety of reasons (e. g., illness, menstruation, emotional lability) (ADA, 1996).

Many adj ustrnents are required when children are diagnosed with diabetes.
Children must manage the physiological changes as well as the changes in their
schedules, activities, and eating habits. Depending on their age, they may be responsible
for managing their own medical care. Children with diabetes may be concerned that they
are different from others as a result of their medical condition as well as having to

manage the stressors that often occur with developmental changes (e. g., adolescence)

(Amer, 1999; Wysocki, Huxtable, Linschield, & Wayne, 1989). Children with diabetes
are restricted from those everyday things that most children take for granted.

Having a child with diabetes presents parents with many challenges as well. For
example, they need to learn about the illness, its symptoms, and its management. They
must develop skills to carry out daily diabetic treatment and integrate it into the existing
routines of the family. Parents must learn to handle medical emergencies and educate
others as to what to do in their absence. Indeed, parents are often placed in a role where
they need to be the medical caregiver in addition to being just a parent. They are also
faced with concerns of ﬁnances, insurance, and their child’s future health. Finally, they
must adapt to the emotional challenges of the illness including sadness, anxiety, fear,
helplessness, grief, guilt, and resentment (ADA, 1996; Amer, 1999; Cox & Gonder-
Frederick, 1992; Faulkner, 1996; Hauser & Solomon, 1985; Kovacs,‘Iyengar, Goldston,
Obrosky et al., 1990; Sargent, 1985; Sills, 1985; Wysocki et al., 1989). Overall, as a
result of the medical concomitants of diabetes and its strict medical regimen, the child,
parents, and even siblings must adapt to the many behavioral and psychological demands
of this chronic and intrusive illness.

Children with chronic health conditions are at risk for emotional and behavioral
difﬁculties as well as difﬁculties in social competence and school performance
(Thompson & Gustafson, 1996; Pless & Nolan, 1991; N011, Bukowski, Rogosch, LeRoy,
& Kulkarni, 1990). Evidence for these difﬁculties has been found in children and
adolescents with asthma (Padur et al., 1995), cystic ﬁbrosis (Thompson, Hodges, &
Hamlett, 1990; DiGirolamo, Quittner, Ackerman, & Stevens, 1997), and congenital heart

disease (Casey, Sykes, Craig, Power, & Mulholland, 1996). The psychological well-being

 

of parents of children with chronic health problems has also been examined. Studies
conducted on these mothers and fathers indicate that, overall, they experience more
symptoms of psychological distress than mothers and fathers of healthy children
(Cadman, Rosenbaum, Boyle, & Offord, 1991; Holmbeck, et al., 1997; Nagy & Ungerer,
1990; Northam, Anderson, Adler, Werther, & Wayne, 1996; Quittner, DiGirolamo,
Michel, & Eigen, 1992; Wallander, Varni, Babani, DeHaan, Wilcox, & Banis, 1989) with
mothers tending to experience higher levels of distress than fathers (Nagy & Ungerer,
1990; Quittner et al., 1992; Timko, Stovel, & Moos, 1992), most likely due to the strain
and restrictions placed on mothers since they are typically the primary caretakers of
children (Quittner et al., 1992).

Because of the particularly difﬁcult demands, challenges, and necessary
adjustment faced by children with diabetes and their parents, their psychological and
social well-being has also been examined but ﬁndings have been inconsistent. Results
indicate that many children with diabetes experience psychosocial problems including
depression, anxiety, sleeping problems, somatic complaints, social withdrawal, and
school absenteeism (Blanz, Rensch-Riemann, Fritz-Sigmund, & Schmidt, 1993; Close,
Davies, Price, & Goodyer, 1986; Fonagy, Moran, Lindsay, Kurtz, & Brown, 1987;
Kovacs, Iyengar, Goldston, Stewart, Obrosky, & Marsh, 1990; Lemmark et al., 1996;
Schultz, 1982; Wysocki, et al., 1989). Indeed, a nine year longitudinal study found that
up to 50% of its sample had one or more episodes of a psychiatric disorder during that
period of time (Kovacs, Iyengar, Mukerj, & Drash, 1996) and results of a meta—analytic
review indicated that children with diabetes were at risk for psychosocial problems

'(Lavigne & Faier-Routman, 1992, as cited in Overstreet et al., 1995). There is also

evidence, however, which suggests that children with diabetes do not experience
signiﬁcant problems (Hamlett, Pellegrini, & Katz, 1992; Nassau & Drotar, 1995;
Northam et al., 1996; Themlund et al., 1996; Vera, Nollet-Clemencon, Vila, Mouren-
Simeoni, & Robert, 1997).

Similarly, results of studies examining the psychological well-being of parents of
children with diabetes have also been equivocal. Chaney and his colleagues (Chaney et
al., 1997) found that only a small portion of parents experienced clinical levels of
psychological distress over a one year study period. The results of one longitudinal study
indicated that both parents exhibited psychological distress but that this distress decreased
over time (Northam et al., 1996). Contradictory results were obtained, however, in
another longitudinal study (Kovacs, Iyengar, Goldston, Obrosky et al., 1990), which
indicated that levels of depression and emotional distress increased slightly for many
mothers over time. Parents who initially have extreme psychological problems after the
initial diagnosis were more likely to later continue experiencing problems (Kovacs,
Iyengar, Goldston, Obrosky et al., 1990; Themlund et al., 1996

Unlike the extensive attention given to the psychosocial well-being of children
with diabetes, limited attention has been given to their parents’ well-being. This is
surprising given the pertinent and integral role which parents play in their child’s medical
treatment and care. According to the Diagnostic and Statistical Manual of Mental
Disorders (4th ed.) (American Psychiatric Association, 1994), depression and anxiety
contribute to mood changes, feelings of worthlessness, and guilt as well as to
impairments in attention, motivation, information processing, and decision making, all of

which could hinder parents’ ability to properly care for their children with diabetes.

Indeed, research has found that parental psychological adjustment (e. g., depression,
anxiety, somatization, anger) and parental involvement with medical care contribute to
the psychosocial functioning and treatment adherence of their children (Anderson, Ho,
Brackett, Finklestein, & Laffel, 1997; Chaney et al., 1997; Frank, et al., 1997; Martin et
al., 1998). Similarly, the well-being of children with diabetes contributes to parental
adjustment and parental stress (Chaney et al., 1997; Wysocki et al., 1989).

Overall, the results of studies examining the psychological well-being of children
with chronic health conditions and their parents suggest that they experience
psychological distress at some point during the illness and to varying degrees. Due to the
variability in results of psychological well-being, researchers have attempted to identify
factors which mediate the adjustment process of children and their parents (McCubbin &
Patterson, 1982; Patterson, 1988; Thompson, Gustafson, Hamlett, & Spock, 1992;
Thompson & Gustafson, 1996; Varni & Wallender, 1988; Wallender, Varni, Babani,
Banis et al., 1989; Wallender, Varni, Babani, DeHaan et al., 1989). These models
incorporate demographic, biomedical, developmental, and psychosocial factors which
affect both child and parental adjustment. Such models are useful in identifying the
conditions under which families are most vuhierable to psychological problems and if
treatment is needed, when and how best to intervene (Quittner & DiGirolamo, 1998).
The purpose of this study was to examine the role of several of these factors in the
adjustment process. In particular, this study examined how family functioning, coping
strategies, and illness-related concerns or demands affect the adjustment of children with

diabetes and their parents.

Family Functioning

For the most part, research conducted on mothers of children with spina biﬁda,
cerebral palsy, sickle cell disease, and cystic ﬁbrosis has shown that illness and
demographic parameters play a limited role in the prediction of child and maternal
adjustment (Thompson et al., 1992; Thompson, Gil, Burbach, Keith & Kinney, 1993;
Thompson et al., 1994; Wallender, Varni, Babani, Banis et al., 1989; Wallender, Varni,
Babani, DeHaan et al., 1989; Wallander & Venters, 1995). Consequently, a majority of
the research has focused on the psychosocial factors which contribute to psychological
adjustment of children and parents. One such factor is family functioning. According to
Kronenberger and Thompson (1990) family functioning refers to the degree of support,
control, and conﬂict in the family environment. The role of family functioning has been
evaluated in diabetes research with the“ primary focus being on predicting the child’s
physical and emotional adjustment.

Children’s Adjustment. Cox and Gonder-Frederick (1992) report that the
environment in which the child resides is associated with treatment adherence and
metabolic control. The family environment can affect metabolic control in two ways.
Family factors may inﬂuence the behavioral management of the diabetes, for example,
the frequency of blood testing or the adherence to diet (ADA, 1996; Faulkner, 1996).
Additionally, the family’s psychological functioning can have a direct effect on the
child’s physiological system; that is, when a child resides in a stressful family
environment this external stress inﬂuences his or her physiological system (ADA, 1996;
Lawler, Vol, Vivani, & Mengel, 1990; Liss et al., 1998; Marteau, Bloch, & Baum, 1987;

Minuchin, Rosman, & Baker, 1978; Peyrot et al., 1999). When individuals experience

stress, the adrenal glands of the sympathetic nervous system release the hormones,
epinephrine and cortisol, into the bloodstream. Epinephrine causes the pancreas to
decrease insulin production whereas cortisol causes the liver to increase the production of
glucose and causes body tissues to decrease glucuse utilization. In addition to causing an
increase of glucose levels in the blood, a lack of insulin causes a breakdown of fatty acids
and increases the amount of ketone bodies produced by the liver. Both increased glucose
levels and ketone levels produce serious health complications which require emergency
medical attention and hospitalization; that is, stress increases the possibility of hyper— and
hypoglycemia (ADA, 1996; Watkins, Drury, Howell, 1996; Surwit, Feingloss, &
Scovem, 1983). Therefore, living in a stressful environment can impede proper glucose,
ketone, and insulin regulation. Consequently, how well or in what way the family
functions can have serious ramiﬁcations for the child’s ability to maintain effective
metabolic control and remain as healthy as possible.

There is extensive research which indicates that certain dimensions of family
functioning play a signiﬁcant role in treatment adherence and metabolic control.
Minuchin and his colleagues (Minuchin, Rosman, & Baker, 1978) found that children
whose families were characterized as enmeshed, overprotective, rigid, and unable to
resolve conﬂict effectively were more likely to have poor metabolic control. In their
study, they exposed children with diabetes to induced parental conﬂict in a laboratory
setting. They found that children who had a history of ketoacidosis showed higher levels
of free fatty acid production at these times than children who had fewer diabetic

complications.

In recent research, investigators have used the child’s blood glucose level rather
than the amount of free fatty acids in the blood as a measure of metabolic control.
Similar to the results of Minuchin and his colleagues, investigators have found that
psychological environment of the family is associated with treatment adherence and
effective metabolic control. For example, Hanson and her colleagues (Hanson, Henggler,
Harris, Burghen, & Moore, 1989) found that poor metabolic control was associated with
low marital satisfaction, family rigidity, and low family cohesion. In addition, Auslander
and her colleagues (Auslander, Bubb, Rogge, & Santiago, 1993) found that better
metabolic control was related to fathers’ reports of higher levels of total family resources,
greater levels of communication and cooperation among family members, and lower
levels of family stress. Mothers’ reports of family resources and stress, however, were
not related to metabolic control. Further analyses revealed that after controlling for the
effects of family resources and endogenous insulin, family stress was the only variable
which made signiﬁcant contributions to metabolic control.

In Wysocki’s (1993) study of adolescents with diabetes and their parents, three
dimensions of the adolescent-parent relationship (problem—solving communication,
irrational beliefs, and family structure) related to the adolescents’ treatment adherence
and metabolic control were examined. Overall, effective commrmication and conﬂict
resolution were the strongest predictors of treatment adherence and metabolic control.
Additionally, adolescents in better metabolic control were more likely to come from
families which had fewer functional and structural difﬁculties.

Longitudinal studies have also demonstrated the importance of family functioning

in treatment adherence and metabolic control. For example, Jacobson and his colleagues

(Jacobson et al., 1994) found that over a four year period, children whose families
encouraged open communication and expression of feelings were more likely to be in
better metabolic control. Although initially both boys and girls were likely to have the
worst metabolic control when their family environment was characterized as conﬂicted
and not cohesive, this pattern was only evident for boys over time, suggesting that boys
were, perhaps, more sensitive to changes within the family environment. Dumont and his
colleagues (1995), however, found that girls were more likely to experience subsequent
recurrent diabetic complications when their families were conﬂicted, not cohesive, poorly
organized, and uncommunicative.

Hauser and his colleagues examined the short- and long-term effects of family
functioning on treatment adherence of children and adolescents with diabetes (Hauser et
al., 1990). Their results revealed that when the patients and their parents perceived their
family as being highly'conﬂicted, the patients were initially more likely to have
difﬁculties adhering to treatment. Conversely, patients and parents who perceived their
families as being well coordinated and organized in family activities were more likely to
report better initial treatment adherence. Additionally, initial treatment adherence was
related to the parents’ perception of familial cohesiveness; that is, patients who were able
to adhere to treatment were likely to have parents who perceived the family as cohesive.
After a four-year period patients from families perceived as being more cohesive by the
parents as well as the patient were more likely to show improved treatment adherence.
Overall, the strongest predictor for long-term treatment adherence was the patient’s

perception of family conﬂict.

10

Just as family functioning plays an important role in metabolic control and
treatment adherence, it is also inﬂuential in the psychosocial adjustment of children with
diabetes. For example, Hanson and her colleagues examined the relationship between
illness-speciﬁc support and various dimensions of family functioning with children’s
self-esteem, social competence, and behavioral problems (Hanson, DeGuire, Schinkel,
Henggeler, & Burghen, 1992). The results suggested that children whose families were
affectionate and provided support speciﬁc to the illness and its treatment regimen were
more likely to perceive themselves as worthy, socially competent, and report fewer
behavioral problems. In addition, children were more likely to adhere to their treatment
regimens when their families were ﬂexible and generally supportive.

Similar results were found by Hauser and his colleagues (Hauser, Jacobson,
Wertlieb, Brink, & Wentworth, 1985). They found that children whose families
facilitated independence, who participated in activities together, and who were well
organized were more likely to perceive themselves as being competent in school, in peer
relationships, and in physical'activities, as well as having high levels of self-esteem.

Finally, in their examination of family cohesiveness and organization, Safyer and
his colleagues (Safyer et al., 1993) found that overall, children with IDDM were more
likely to report better levels of adj ustment when their families were cohesive and
organized. Indeed, such environments are related to better peer and family relationships
and better adjustment at school.

Notably, in addition to the family functioning research, investigators have also
examined the relationship between metabolic control and psychosocial adjustment. In

one study it was found that behavior problems were related to more diabetes-related

11

hospitalizations for girls and more diabetes-related adjustment problems for boys
(Lemmark et al., 1996). In addition to behavior problems, there is evidence that the level
of depression reported by adolescents is positively correlated with metabolic control
(Lawler et al., 1990); that is, adolescents who reported signiﬁcant levels of depressive
symptomatology were more likely to have poor metabolic control. Research has also
shown that a diabetic child’s sense of self-competence, level of self-esteem, emotional
well-being, and social ﬁmctioning were predictive of both short-and long-term metabolic
control (Daviss et al., 1995; Jacobson et al., 1987; Marteau et al., 1987). According to
Marteau and her colleagues, children living in a less stressﬁil environment are more likely
to be happier and consequently less likely to disrupt their physiological systems.
Conversely, children who are depressed may be more likely to make suicidal gestures
such as forgetting to take insulin or not following the appropriate diet (Lawler et al.,
1990). Similarly, children with diabetes with recurrent hypoglycemic episodes were
shown to be at greater risk for developing psychological problems (Liss et al., 1998). As
a result, the psychosocial well-being or adjustment of children could compromise their
metabolic control and, subsequently, their physical health.

The relationship between the psychosocial factor of family ﬁmctioning and child
adjustment is not necessarily a unidirectional, linear one. Indeed the child’s
psychological well-being and metabolic control can affect family functioning and family
functioning can, in turn, affect the child’s adjustment. Typically, studies that examined
adjustment and family ﬁrnctioning have used cross-sectional designs. Such designs do
not allow for the determination of causality. In addition, longitudinal studies have

examined the role of family functioning in the adjustment of children with diabetes,

12

however, they have not examined the effects of adjustment on long—term family
functioning. For example, although Northam and her colleagues (1990) examined
changes in family functionng over a four year period, they did not speciﬁcally address
the relationship between metabolic control and family functioning, per se. Indeed, the
complex demands of diabetes can alter the structure of the family (e. g., change roles of
family members) and family life as well. As a result, metabolic control could lead to
such occurrences as conﬂict, disruptions, or lack of cohesiveness within the family
system. Because this area has seemingly received little attention, this present study
expanded upon previous research by determining the effects of metabolic control on
family functioning.

Parental Adjustment. Overall, it appears that how well the family is functioning
is inﬂuential in determining both the practical and emotional adjustment of children with
diabetes. Just as family functioning is instrumental in understanding the adjustment
process of these children, there is evidence which suggests that it is an important
component in the adjustment process of parents of children with chronic health
conditions. For example, mothers of children with juvenile rheumatoid arthritis who
reported greater levels of family cohesion and expressiveness experienced less depression
and personal strain (Timko et al., 1992). Thompson and his colleagues have found that
high levels of support and control as well as low levels of conﬂict are associated with
lower levels of psychological distress in mothers of children with cystic ﬁbrosis and
sickle cell disease (Thompson et al., 1992; Thompson et al., 1993; Thompson et al.,

1994). Similarly, better family support was associated with fewer physical complaints in

l__J

mothers of children with either cerebral palsy or spina biﬁda (Wallander, Varni, Babani,
DeHaan et al., 1989).

In reviewing the literature, however, there appeared to be limited research
examining how family ﬁinctioning affects the adjustment process of parents of children
with diabetes. The research that has been conducted indicated that mothers who perceive
their families as supportive and use effective coping strategies are less likely to
experience symptoms of depression (Blankfeld & Holahan, 1996). Despite the limited
research with parents of children with diabetes, research conducted on parents of children
with other chronic health conditions has indicated that different dimensions of the
psychological functioning of the family are important determinants of adaptation to the
multiple stressors associated with having a chronically ill child. As Northam and her
colleagues note (1996), families must modify their routines and take on new
responsibilities as well as ﬁnd a balance between healthy attachment and
overprotectiveness on a continual basis. Family functioning is of particular importance to
parental adjustment in this population because parents are not only instrumental in the
functioning of the entire family system (Minuchin, 1974) but also play a crucial role in
the ongoing management of their child’s illness. Therefore, how supportive, engaged,
and ﬂexible a family is could affect how well parents are able to emotionally and
practically adjust to their child’s diabetes. Consequently, identifying the family factors
which inﬂuence the adjustment process for parents of children with diabetes warranted

further investigation.

14

Parental Coping Strategies

Because these parents face many challenges, how they cope with them is of
particular importance. The types of coping strategies used by parents are instrumental in
deterrrrining their level of adaptation. In general, coping strategies are cognitive,
behavioral, and emotional attempts at managing challenging or stressful situations. Roth
and Cohen (1986) propose that coping strategies utilized by an individual can be deﬁned
as attempts to either move toward (approach) or away from (avoid) the problem or
stressor. Although we are capable of utilizing either mode of coping, individuals tend to
have consistent preferences for either avoidance or approach strategies.

Approach strategies enable the individual to take appropriate action to manage the
problem. They reﬂect attempts at orienting one’s self to the problem and its
consequences. Examples of approach coping include making attempts at understanding
or appraising the problem, ﬁnding resolution, gathering information, making plans,
expressing emotions, and seeking support. Avoidance strategies, on the other hand,
deﬁne those attempts made by individuals to ignore or avoid the problem and its
consequences. Denying, procrastinating, seeking distraction, and intellectualizing are
examples of strategies for avoiding problems and associated emotions (Roth & Cohen,
1986)

According to Hauser and Solomon (1985), parents cope with their child’s diabetes
in a variety of ways. Some parents use approach coping such as learning to accept their
child’s illness and its accompanying limitations and demands. In addition, they attempt
to incorporate their child’s treatment regimen into daily family routines with limited

disruptions. Furthermore, they choose to seek out support from medical professionals,

15

family members, ﬁiends, and support groups. On the other hand, Hauser and Solomon
(1985) report that parents may engage in avoidance coping as well. Parents may deny the
existence of their child’s illness as evidenced by neglecting to administer or monitor their
child’s treatment regimen appropriately. In addition, some parents may become
overperrnissive whereas as other parents may become overprotective or overcontrolling in
regard to their child’s treatment and daily activities. Finally, some parents have reported
becoming overwhelmed by their child’s illness and needing to distract themselves
(Faulkner, 1996).

According to Roth and Cohen (1986) there are costs and beneﬁts to utilizing
approach and avoidance coping strategies. Approach coping is beneﬁcial because it
enables the individual to be instrumental in gaining control over the problem, enables the
individual to fully experience and express his/her emotions, as well as facilitate some
kind of resolution. Unfortunately, approaching the problem may lead to increased
distress and nonproductive and consuming worry. Avoidance strategies enable the
individual to reduce stress and anxiety and allow for a gradual assimilation to the stressor.
Avoidance strategies are useful because the individual is able to take his or her time
acclirnating to the problem and they provide a sense of hope or optimism. These
strategies protect the individual from the distressing consequences of the problem so that
the individual is more able to mobilize himself or herself into action. Despite the beneﬁts
of these strategies, there are drawbacks. For example, although it is proposed that these
strategies can facilitate approach strategies, they may not do so. If an individual relies
heavily on avoidance coping, this reliance can interfere with the individual’s ability to

mobilize himself or herself to handle the problem. These strategies can also lead to an

16

inability of the individual to experience or express his or her emotions, an inability to
understand or be aware of the relationship between the problem and psychological
symptoms, or lead to withdrawal or reduction in activities or behaviors.

As indicated by Roth and Cohen (1986), the extent to which individuals rely on
approach or avoidance coping can inﬂuence how well they are able to adapt to stressful
situations. There has been much research examining which coping strategies inﬂuence
the adjustment process of parents of children with chronic health conditions. For
example, in their study examining mothers of children with cerebral palsy, Sheeran,
Marvin, and Pianta (1997) found that mothers who engaged in more approach coping
strategies such as a reorienting to the present and ﬁrture, having a realistic View of the
child, terminating the search for existential reasons for their child’s condition, expressing
emotions, and having an understanding and recognition of the impact of the child’s
condition on themselves were more likely to experience lower levels of parenting stress
and were satisﬁed with the help that they received from their social networks.
Conversely, mothers who engaged in more avoidance coping strategies such as having
unrealistic expectations of their child’s condition and potential, continuing to search for
existential reasons for their child’s condition, denial, selective attention, and passivity
experienced clinically signiﬁcant levels of parenting stress and reported being dissatisﬁed
with their social networks as well as needing more help than they were given.

Holrnbeck and his colleagues (1997) studied the coping strategies and
psychosocial adjustment of parents of children diagnosed with spina biﬁda and parents of
healthy children. They found that across the two groups, fathers who were emotionally

expressive or who seldom relied on behavioral disengagement as a means of coping

17

reported fewer psychological symptoms. Additionally, fathers who engaged in the
coping strategy of “positive reinterpretation and growth” were more likely to report being
satisﬁed as a parent and in their marriage. Mothers who seldom relied on behavioral
disengagement as a coping strategy also reported fewer psychological symptoms and
were more likely to be satisﬁed with their marriage.

In their study of parents of children with rheumatoid arthritis, Tirnko et al. (1992)
found that mothers and fathers who relied on avoidance coping strategies (e. g., refusing
to believe that it happened, reducing tension by drinking) were more likely to experience
symptoms of depression and strain resulting ﬁom the demands of their child’s illness.
Conversely, among both mothers and fathers, approach coping strategies (e. g., preparing
for the worst, trying to ﬁnd out more about the situation, making a plan of action and
following it) were positively related to their engagement in more social activities as well
as related to their ability to handle the stressors associated with their child’s illness.
Similar results were found one year later: Mothers and fathers who engaged in avoidance
coping strategies were more likely to experience symptoms of depression. Additionally,
mothers were more likely to experience personal strain whereas fathers were more likely
to be socially isolated. Similar ﬁndings were found for mothers of children with cystic
ﬁbrosis and sickle cell disease (Thompson et al., 1994) with mothers who engaged in
more avoidance coping strategies (e. g. wishful thinking, self blame) than approach coping
strategies (e. g. cognitive restructuring, seeking information, seeking social support) being
more likely to experience psychological distress.

Research on the effectiveness of coping strategies has also been examined in

parents of children with diabetes. For example, in Blankﬁeld and Holahan (1996)’s study

18

of family support and coping strategies, the relationship between family support and the
amount of depression experienced by mothers was found to be mediated by the
percentage of approach coping strategies utilized by mothers. In Hauser, DiPlacido,
Jacobson, and Willett’s (1993) case study analysis they found that adolescents with
diabetes were better adjusted and in better metabolic control when their families utilized
approach coping strategies such as actively seeking out information and social support as
well as drawing on previous experience to guide them in managing their child’s diabetes.
In contrast, families of adolescents with minimal compliance used more avoidance coping
strategies (e. g., minimizing their emotional reactions and using denial) and appeared to be
more anxious.

Although some contradictory results have been found regarding the effectiveness
of approach and avoidance coping (e. g., Kupst et al., 1995), the majority of research
reviewed indicates that avoidance coping is related to poor adaptation whereas approach
coping is related to better adaptation. As Tirnko and her colleagues (1992) conclude, the
use of avoidance coping by mothers and fathers interferes with their ability to confront
and adapt to their child’s condition and its associated stressors and subsequently proves to
be detrimental to the adaptation process. When mothers and fathers rely on approach
coping strategies, however, they are more likely to seek support, seek information,
regulate their emotional responses, and determine alternative methods for managing their
child’s condition and associated stressors. As a result, parents are better informed and
better equipped to adjust to the demands of their child’s condition. Therefore, parents
who utilize approach coping more than avoidance coping are less likely to experience

psychosocial difﬁculties. Because of the integral role that parents play in their child’s

l9

well—being, the manner in which parents cope with the demands of diabetes is important
to examine not only because of its effects on parental psychological well-being but its
potential effects on these children.

The Role of Stress

According to Quittner and DiGirolomo (1998), models of adjustment consider the
chronic medical condition as the stressor to which the family must adapt. Their review of
the literature, however, reveals that this area has received little empirical attention.
However, based on the limited research, they outlined four ways in which this concept of
“stress” has been examined empirically: l) examining the presence or absence of the
illness by comparing the results from families in which there is a child with a chronic
illness to families in which the child is healthy (in this case, the disease is, in and of itself,
the stressor); 2) examining parameters related to the medical condition (e. g., duration of
illness, illness severity, medical indicators); 3) daily hassles and life events and; 4) tasks
or demands that are illness-related.

Research conducted on families with a diabetic child in which a general measure
of “stress” was used have produced inconsistent results. For example, research which
examined the number of life events found that the number was not signiﬁcantly related to
the child with diabetes’ metabolic control or psychological well-being (Blanz et al., 1993;
Smith, Mauseth, Palmer, Pecoraro, & Wenet, 1991). Auslender and her colleagues
(1993), however, used a measure which reﬂected the total intensity of a variety of strains
and demands faced by the family over the previous year and found a signiﬁcant
relationship between this measure of stress and metabolic control. Finally, in another

study examining the effects of parental stress speciﬁc to the parent-child relationship, it

20

was found that maternal stress was signiﬁcantly related to diabetes-related behavior
problems in children (e.g., child refusing to take insulin or not eating properly) (W ysocki
et al., 1989).

Quittner and DiGirolomo (1998) argue that variability in such research may be
due to the fact that the research fails to effectively or appropriately examine “stress.” For
example, in two of the studies just discussed, stress was measured by instruments which
reﬂected everyday hassles or stressful life events that we commonly experience.
However, these types of stressors are not necessarily speciﬁc to concerns or demands of
families in which there is a diabetic child. On the other hand, in Wysocki et al.’s study
(1989), a measure speciﬁc to the demands faced by parents of a diabetic child was used.
It appeared that this measure may have better captured the types of behaviors or events
that are particularly distressing to these particular parents. Quittner and DiGirolomo
( 1998) have also found similar results. In their research on childhood disability, they
found that using a measure of stress related to the medical condition was a better
predictor of parental psychological well-being than was a general measure of stress.
Investigators suggest that research examining predictors of family adjustment would
beneﬁt from incorporating measures that are speciﬁc to or at least reﬂect the medical
condition in question; that is, using measures that reﬂect those tasks, demands, or
concerns often faced by families in which there is a child with a chronic health condition
(Drotar, 1997; Quittner & DiGirolomo, 1998). Because so few studies have examined the
effects of speciﬁc illness-related concerns on the well-being of children with diabetes and

their parents, this study was designed to address this issue.

21

 

Mediation Models

Previous studies examining the effects of family functioning and coping strategies
have been useful in determining which particular components negatively or positively
affect the well-being of children with chronic health conditions and their parents.
However, many investigators tend not to consider the possibility of causal or mediating
relationships in their analyses (Drotar, 1997; Quittner & DiGirolomo, 1998). This
phenomenom may result from investigators treating the mere presence of the chronic
health condition as being 115 stressor to which the family must adapt. Being able to
measure the extent of the effects of this stressor is difﬁcult to do unless data from these
families is compared to nonclinical families. Similarly, without a speciﬁc measure of the
stressor, it is difﬁcult to test mediating relationships. Because this study used a measure
reﬂecting illness-related concerns or demands, however, it provided an opportunity to
explore possible mediating relationships. As discussed earlier, families characterized by
warmth, support, open communication, cohesion, ﬂexibility, and low conﬂict buffer the
stress associated with chronic health conditions such as diabetes. Similarly, effective
coping strategies such as positive reframing, problem solving, and support seeking serve
as stabilizing factors as well. Therefore it was expected that family functioning and
coping strategies would serve as mediators in the relationship between illness-related
concerns or demands and child and parental well-being.
Rationale for Study

The purpose of this study was to examine psychosocial factors which mediate the
adjustment process of children with diabetes and their parents. Speciﬁcally, it examined

the role of family functioning, coping strategies, and the impact of having a diabetic child

 

 

on the psychological well-being of parents. Similarly, it examined the role of family
functioning and impact on the physical and emotional well-being of children with
diabetes. Although extensive research has been conducted on parents and children with
chronic health conditions (in particular, children with diabetes), this study attempted to
build upon and extend previous research.

Little empirical attention has been given to parents of children with diabetes.
Similarly, there is a paucity of research examining the relationships between family
functioning and coping strategies and their psychological well-being. The lack of
attention that has been given to parental adjustment is surprising given that they play such
an important and integral role in the maintenance of the family system and the medical
care of their children. Brieﬂy, research conducted on mothers of children with chronic
health conditions indicated that the functioning of the family and the types of coping
strategies used by parents affect their psychological well-being. Given that mothers and
fathers of children with diabetes are presented with many daily challenges to which they
must adapt, the ability of the family to be committed, supportive, expressive, cohesive,
and well organized becomes an important factor in their adjustment. Similarly, the
manner in which the parent chooses to cope with the challenges associated with having a
diabetic child is also an important inﬂuence as well and warrants further empirical
attention. Notably, this study recruited fathers as participants. As discussed earlier,
fathers are often not included such research because mothers typically identify themselves
as the primary caretaker. Because fathers are often not included in research, however, it
does not allow for examining and understanding the experiences speciﬁc to fathers of

children with diabetes. According to Quittner and DiGirolomo (1998) and Seagull

23

 

(2000), the role fathers play in the family and in their child’s care may be different from
the mother and as a result they may be differently affected by their child’s illness,
dimensions of family functioning, and coping strategies.

In regard to children, this study built upon previous research by examining the
role of family functioning in both psychological well-being and metabolic control.
Previous research on families of chronically ill children indicated that high levels of
familial support and low levels of conﬂict and control are predictive of better
psychosocial adjustment in parents. Similarly, children with diabetes are more likely to
adhere to their treatment regimen, maintain better metabolic control, and experience
fewer psychosocial difﬁculties when their family environment is supportive, organized,
and able to manage conﬂict effectively. However, this present study also extended this
research by examining the interrelationship between family functioning and metabolic
control by attempting to identify whether or not metabolic control affects family
functioning or vice versa.

In addition, this study examined the effects of illness-related tasks and demands
on the adjustment of children with diabetes and their parents. Although previous research
has examined the relationship between “the stressor” and well-being, they typically have
included global measures of stress. These types of measures may not necessarily account
for the impact that the illness can have on a family. As a result, this study employed a
questionnaire that reﬂected some of the demands faced by families in which there is a
child with a chronic health condition.

Relatedly, this study built on previous research on risk and resistance models by

examining potential mediating relationships. It was expected that family functioning and

24

coping strategies would buffer the relationship between illness-related burdens and the
well-being of both children and parents. Overall, it was expected that clarifying the role
of these psychosocial variables in the adjustment of these families would help provide a
more comprehensive picture of who may be at risk.

Hypotheses

Below are the hypotheses and additional analyses examined in this study. Table I
provides an outline of the hypotheses, research variables, measures, and plan of analyses.

Family Functioning and Parents’ Psychological Well-Being. For the purpose of
this study, family ﬁmctioning was deﬁned by the amount of cohesion, expressiveness,
and conﬂict in the family. According to Moos and Moos (1994), cohesion refers to how
committed, helpful, and supportive are family members. Expressiveness refers to how
much family members are encouraged to express themselves; that is, their thoughts,
feelings and opinions. Conﬂict refers to how much anger and conﬂict is expressed
among family members. These subscales have been used in other research examining
family functioning and psychological well-being (Blankﬁeld & Holahan, 1996; Holohan
& Moos, 1990). Three hypotheses were proposed:

1) Family cohesion is negatively correlated with psychological distress in parents;
that is, parents from families low in cohesion are more likely to experience symptoms of
depression and anxiety;

2) Family expressiveness is negatively correlated with psychological distress in
parents; that is parents from families low in expressiveness are more likely to experience

symptoms of depression and anxiety and;

25

3) Family conﬂict is positively correlated with psychological distress; that is,
parents from families high in conﬂict are more likely to experience symptoms of
depression and anxiety.

Coping Strategies and Parents’ Psychological Well-Being. Two hypotheses were
proposed for this area:

4) Approach coping strategies are negatively correlated with psychological
distress; that is, parents who do not use Approach coping strategies to a great extent are
more likely to experience symptoms of depression and anxiety and;

5) Avoidance coping strategies are positively correlated with psychological
distress; that is, parents who use Avoidance coping strategies to a great extent are more
likely to experience symptoms of depression and anxiety.

Illness-Related Concerns or Demands and Parents’ Psychological Well-Being.
One hypothesis was made regarding the effects of illness-related stressors:

6) Illness-related concerns or demands are positively correlated with
psychological distress; that is, parents who report experiencing illness-related problems
are more likely to experience symptoms of depression and anxiety.

Family Functioning and Children’s Well-Being. The following six hypotheses
were made in regard to the effects of family functioning on the well-being of children
with diabetes:

7) Family cohesion is negatively correlated with psychological distress and poor
metabolic control in children; that is, children from families low in cohesion are more
likely to experience emotional and behavioral problems as well as have difﬁculties

maintaining proper metabolic control.

26

8) Family expressiveness is negatively correlated with psychological distress and
poor metabolic control in children; that is, children from families low in expressiveness
are more likely to experience emotional and behavioral problems as well as have
difﬁculties maintaining proper metabolic control.

9) Family conﬂict would be positively correlated with psychological distress and
poor metabolic control in children; that is, children from families high in conﬂict are
more likely to experience emotional and behavioral problems as well as have difﬁculties
maintaining proper metabolic control.

Illness-Related Concerns or Demands and Children’s Psychological Well-Being,
and Metabolic Control. The following hypotheses were proposed for the effects of
illness-related stressors:

10) Illness-related concerns or demands are positively correlated with children’s
psychological distress; that is, children from families. with illness-related concerns or
demands are more likely to experience emotional or behavioral problems and have
difﬁculties maintaining proper metabolic control.

Other analyses. In addition to the aforementioned hypotheses, the following
hypotheses were examined:

11) Poor metabolic control is positively correlated with psychological distress in
children; that is, children with emotional or behavioral problems are more likely to
experience problems maintaining proper metabolic control.

12) Dimensions of family functioning and two coping styles mediate the
relationships between illness-related concerns or demands and child and parental well-

being. Speciﬁcally, family cohesion, expressiveness and conﬂict each account for the

27

variation in parental and child psychological well-being as well as for the variation in
metabolic control. Similarly, Approach and Avoidance coping strategies each account
for the variation in parental psychological well-being.

The following ideas were also examined in this study:

13) The direction of the relationships between family functioning and illness-
related concerns or demands and metabolic control.

14) The effects of children’s age and illness duration were also examined.
Research suggests that the challenges faced by parents of young children are different
from those of parents with adolescent children because of their degree of involvement in
medical care or because of developmental changes of the children, for example. The
challenges faced by parents of young children aredifferent ﬁom those of parents with
adolescent children. Parents of young children are typically in charge of the maintenance
of the medical regimen but as these children age, they become more responsible for the
diabetes care themselves. In this example, parents of younger children may feel more in
control of the children’s well-being whereas parents of older children may be
apprehensive of their children’s understanding the necessity of following the prescribed
medical regimen as well as their ability to adhere to it. Likewise, parents of adolescents
are faced with the challenges of children who are at an age where they desire to be
independent of their parents, who want to be “normal.” Unfortunately, being diabetic
does not necessarily facilitate this sense of normalcy and adolescent diabetics may rebel
by not properly adhering to treatment, therefore, putting themselves in danger.

Similarly, the length of time since the child’s diagnosis is also an important

consideration that was not examined in this study. For example, parents often report

28

experiencing shock and grief in response to the recent diagnosis of diabetes. Relatedly,
these particular parents and children must educate themselves in diabetes (e.g., what it is,
what are the implications, and what are the short- and long-term potential complications)
and in proper diabetes care. Families often report being overwhelmed by these
experiences. Parents and children who have lived with diabetes for a few years, however,
may not have the same stressors; that is, instead of short-term complications which they
may be better prepared to manage, the long-term considerations including ﬁnancial and
medical concerns for their children in adulthood become important concerns. As a result,
the relationship between illness duration and each of the following variables were
examined: the psychosocial variables, emotional and behavioral problems, and metabolic

control.

29

 

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33

METHOD

Procedures

Participants were recruited through three pediatric diabetes clinics: Michigan
State University Clinical Center, East Lansing, Michigan; Michigan State University at
the Kalamazoo Center for Medical Studies, Kalamazoo, Michigan; and The Children’s
Clinics for Rehabilitative Services, Tucson, Arizona. The study protocol was approved
by all three clinic’s respective institutional review boards (see Appendices A through C).
Potential participants were identiﬁed from each clinic’s patient roster. A letter explaining
the purpose of this study was mailed to the families (see Appendix D for sample letter).
Parents being served by both Michigan State University pediatric diabetes clinic were
instructed to write down their name and telephone number on an enclosed stamped,
addressed postcard and mail it back to the investigator if they were interested in learning
more about the study. In the letter from the Children’s Clinics for Rehabilitative
Services, interested parents were asked to leave a voice mail message at the investigator’s
workplace. Parents were then contacted by the investigator who described the purpose
and procedures of the study (see Appendix E). Those parents who expressed an interest
in participating were sent a letter with directions, consent form (see Appendices F
through I) and a packet of questionnaires to complete. If both parents of the family
agreed to participate, they were asked to complete the questionnaires on their own. All
participants were offered the opportunity to participate in a random drawing for a single
seventy-ﬁve dollar award. A stamped, self-addressed envelope was also provided in

order for the parents to mail back their completed consent forms and questionnaires.

34

 

A list of the participating children was deveIOped from information on the consent
form. Each appropriate clinic received a list of these names from the investigator.
Medical staff obtained each child’s glycohemoglobin values (HbAIC) from the child’s
medical records.

Participants

A total of 105 families participated in this study. The study sample was
comprised of 103 females who identiﬁed themselves as a parent (100 mothers, 2 step-
mothers, and 1 grandmother).’ Mothers ranged in age from 26 to 58 years (M=0; SD=6).
This study was also comprised of 35 males who identiﬁed themselves as a parent (33
fathers, 2 step-fathers).2 Fathers ranged in age from 26 to 57 years of age (M=43; SD=7).
Of the 138 parents participating in this study, there were 33 couples. All parents resided
in the same home as the diabetic child: Although both parents were invited to participate,
the majority of participants were mothers. Such limited paternal participation in studies
examining childhood chronic illness is not unusual and hypothesized to be due to the
mother having a greater role in caretaking (Kazak, 1997; Quittner et al., 1992). See Table
2 for complete demographics.

One hundred and seven children participated in this study. Notably, two of the
participating families had two children with diabetes. There were 61 boys and 46 girls
with ages ranging from 4 to 17.5 years of age (M=12; SD=4). The children had been
diagnosed with diabetes for at least 6 months to 204 months (M=5 8.61; SD=41.04).3

Table 3 contains frequencies of children’s age and illness duration.

 

1For purposes of this study, they will be referred to as mothers.
2For purposes of this study, they will be referred to as fathers.
3Children’s demographic information based on mothers’ report.

35

 

Table 2

Barents’ Demographics

Total number of participating families
Total number of participating parents
Total number of participating children

MOTHERS

Total number of participating mothers
Total number of mothers participating alone
Total number of mothers whose spouse participated

Relationship to Child

Ethnic Background

Current Education Level

Gross Annual Family Income

(N=101)

Mother _
Step-Mother
Other

Caucasian/White
African American/Black
Asian American

Other

High school grad/GED

Some college or 2 year degree
Bachelor’s degree
Post—bachelor’s degree

Less than $10,000
$10,000 to $20,000
$20,001 to $30,000
$30,001 to $40,000
$40,001 to $50,000
$50,001 to $60,000
$60,001 to $70,000
$70,001 to $80,000
$80,001 to $90,000
Above $90,000

36

Number
105
138
107

Number
103
70
33

Number

100

28
35
27

00\IN

Percent

97
2
1

97.0
1.0
1.0
1.0

27.5
34.3
26.4
11.8

2.0
6.9
7.9
12.9
17.8
15.8
7.9
5.0
6.9
16.8

Table 2 (cont’d).

FATHERS
Total number of participating fathers
Total number of fathers participating alone
Total number of fathers whose spouse participated

Relationship to Child
Father
Step-Father
Ethnic Background
Caucasian/White
Hispanic/Latino
Current Education Level
High school grad/GED

Some college or 2 year degree
Bachelor’s degree
Post-bachelor’s degree

Gross Annual Family Income

$20,001 to $30,000
$30,001 to $40,000
$40,001 to $50,000
$50,001 to $60,000
$60,001 to $70,000
$70,001 to $80,000
Above $90,000

37

Number
3 5

33

Number

OONMQUIN-h

Percent

17.1
40.0
20.0
22.9

12.1

6.1
15.2
21.2
15.2

6.1
24.2

 

Table 3

Frequency Distribution of Age

Children’s Age Frequency Percent
(3’68“)

4 3 2.9

5 3 2.9

6 4 3.9

7 6 5.7

8 7 6.7

9 5 4.8

10 8 7.6

11 8 7.6

12 9 8.6

13 6 5.7

14 12 11.4

15 6 5.7

16 18 16.2

17 10 1.0

Table 4

Frequency Distribution of Illness Duration

Illness Duration Frequency Percent
(months)

6-12 7 6.8
13-24 18 17.5
25-36 15 14.6
37-48 1 1 10.7
49-60 18 . 17.5
61-72 7 6.8
73-84 6 5.8
85-96 6 5.8

97-204 15 14.6

38

 

Measures

Demographics. Demographic information was collected including parents’ age,
sex, education, and ethnicity, annual family income, child’s age, sex, and duration of the
child’s diabetes (See Appendix J).

Family Functioning. The Family Environment Scale-2nd edition (FES; Moos &
Moos, 1994) is a 90 item, true-false, self-report measure (See Appendix K). The FES is
designed to measure the social climate of the family. The ten subscales of the FES
measure three dimensions of family functioning: Personal Growth (Independence,
Achievement, Intellectual-Cultural, Activity-Recreation, and Moral-Religious
Orientations); Relationship (Cohesion, Expressiveness, and Conﬂict); and System
Maintenance (Organization, Control). The scales have shown adequate internal
consistency, ranging from .61 to .78. Test-retest reliabilities range from .68 to .86 for a
two-month interval. Adequate construct and discriminant validity have also been found
for the subscales (Moos & Moos, 1994). The scores from the subscales of Cohesion,
Expressiveness, and Conﬂict were used for this study. Moos and Moos (1994) reported
adequate internal consistency for these subscales ranging from .69 to .78. Cronbach
alphas for these scale for this study were: Cohesion = .70; Expressiveness = .56; and
Conﬂict = .73. Tables 5 through 7 provide the means, standard deviations, and corrected
item-total correlations for these scales. Reliability analyses conducted on these and
subsequent scales are based on mothers’ data.

Coping Strategies. Two coping variables were derived from a 30-item measure.

This 30-item measure reﬂects cognitive and behavioral coping strategies which typify

39

Table 5

Psychometric Properties of the Cohesion Scale

 

 

Item Item Mean Standard Corrected
Deviation Item-Total

Correlation

Family members really help and 0.88 0.33 0.45

support one another.

We often seem to be killing time at 0.84 0.37 0.20

home.

We put a lot of energy into what we do 0.77 0.42 0.23

at home.

There is a feeling of togetherness in our 0.89 0.32 0.20

family.

We rarely volunteer when something 0.70 0.46 0.32

has to be done at home.

Family members really back each other 0.74 0.44 0.45

up.

There is little group spirit in our family. 0.80 0.40 0.39

We really get along well with each ' 0.87 0.34 0.43

other.

There is plenty of time and attention for 0.73 0.45 0.43

everyone in our family.

Alpha = 0.70 Scale Mean = 7.22 Scale SD = 1.91

 

 

40

 

 

Table 6

Psychometric Properties of the Egpressiveness Scale

 

 

Item Item Mean Standard Corrected

Deviation Item-Total
Correlation

Family members often keep their feelings to 0.73 0.45 0.50

themselves.

We say anything we want to around home. 0.58 0.50 0.14

It’s hard to “blow off steam” at home 0.45 0.50 0.39

without upsetting somebody.

We tell each other about our personal 0.86 0.35 0.17

problems.

If we feel like doing something on the spur 0.77 0.42 0.26

of the moment we often just pick up and go.

Someone usually gets upset if you complain 0.75 0.44 0.36

in our family.

Money and paying bills is openly talked 0.78 0.42 0.12

about in our family.

We are usually careful about what we say to 0.40 0.49 0.08

each other. -

There are a lot of spontaneous conversations 0.85 0.36 0.31

in our family.

Alpha = 0.56 Scale Mean = 6.16

Scale SD = 1.84

 

41

 

Table 7

Psychometric Properties of the Conﬂict Scale

 

 

Item Item Mean Standard Corrected

Deviation Item-Total
Correlation

We ﬁght a lot in our family. 0.15 0.36 0.45

Family members are rarely ordered around. 0.60 0.49 0.61

Family members sometimes get so angry 0.17 0.38 0.49

they throw things.

Family members hardly ever lose their 0.52 0.50 0.44

tempers.

Family members often criticize each other. 0.30 0.46 0.50

Family members sometimes hit each other. 0.20 0.41 0.41

If there’s a disagreement in our family, we 0.17 0.38 0.18

try hard to smooth things over and keep the

peace.

Family members often try one-up or out-do 0.12 0.33 0.38

each other.

In our family, we believe you don’t ever get 0.57 0.50 0.23

anywhere by raising your voice.

Alpha = 0.73 Scale Mean = 2.82

Scale SD = 2.17

 

42

Approach coping and Avoidance c0ping (see Appendix L). This measure is a modiﬁed
version of the COPE (Carver, Scheier, and Weintraub, 1989). Parents were asked to
indicate how often they used each of the c0ping strategies when managing stressﬁrl
situations relative to their child’s illness. Items were chosen based on how theoretically
relevant they were to the Approach and Avoidance constructs proposed by Roth and
Cohen (1986). Speciﬁcally, Approach was measured by items from the subscales of
Active Coping, Planning, Seeking Support for Instrumental Reasons, Seeking Social
Support for Emotional Reasons, and Focus On and Venting of Emotions. Avoidance was
measured by the items from the subscales of Denial, Behavioral Disengagement, and
Mental Disengagement. Scores for Approach and Avoidance were determined by the
sum of the item scores within each construct. Each participant received a score for
Approach and a separate score for Avoidance.

All items were submitted to a principal axis factor analysis with oblique rotation.
Kaiser’s criterion indicated eight factors with an eigen value of one or greater whereas the
scree plot indicated six factors. Review of the factor matricies from PFAs imposing an
eight and six factor solution, respectively, revealed that the variables were not well-
deﬁned by either of these solutions. Given that two factors derived from the thirty items
originally proposed, a PFA was conducted imposing a two factor solution. Oblique
rotation was used because the coping strategies were considered theoretically related and
a correlation between the factors was expected. Items measuring Approach and
Avoidance loaded onto their respective factors, though, the results suggested that the

items loaded on the Approach factor (see Table 8). However, based on theoretical

43

Table 8

Principal Axis FaLtor Analysis

 

 

Item Approach Avoidance
I talk to someone who could do something concrete about 0.79 0.11
the problem.

I talk to someone about how I feel. 0.70 0.41
I try to get emotional support from ﬁiends and relatives. 0.69 0.36
I discuss my feelings with someone. 0.68 0.27
I talk with someone to ﬁnd out more about the situation. 0.68 0.28
I make a plan of action. 0.68 -0.23
I concentrate my efforts on doing something about it. 0.68 -0.01
I think hard about what steps to take. 0.66 -0.16
I let my feelings out. 0.62 0.36
I try to come up with a strategy about what to do. 0.62 -0.01
I get sympathy and understanding from someone. 0.59 0.32
I ask people who have had similar experiences what they 0.58 0.24
did.

I try to get advice from someone about what to do. 0.55 0.41
I think about how I might best handle the problem. 0.53 -0. l 7
I take additional action to try to get rid of the problem. 0.48 0.00
I take direct action to get around the problem. 0.39 0.16
I do what has to be done, one step at a time. 0.36 -0.01
I get upset and let my emotions out. 0.29 0.27
I admit to myself that I can’t deal with it, and quit trying. -0.30 0.49
I go to the movies or watch tv, to think less about it. -0.17 0.47
Ijust give up trying to reach my goal. -O.48 0.47
I say to myself, “This isn’t real.” -0.48 0.41
I give up the attempt to get what I want. -0.40 0.44
I daydream about things other than this. 0.18 0.33
I pretend that it hasn’t really happened. -0.44 0.33
I reduce the amount of effort I’m putting into solving the -0.41 0.31
problem.

I act as though it hasn’t even happened. -0.43 0.29
I refuse to believe that it has happened. -0.43 0.23
I sleep more than usual. -0.16 0.19
I turn to work or other substitute activities to take my mind -0.27 0.18

off of things.

 

44

considerations and the fact that the correlation between the two factors was modest

(r= -0.25), keeping the two factor solution was justiﬁable. Cronbach alphas for the
Approach and Avoidance scales were .91 and .82, respectively. Tables 9 and 10 provide
the means, standard deviations, and corrected item-total correlations for these scales.

Illness-Related Concerns or Demands. The Impact on the Family Scale is a 24
item measure assessing the concerns, demands, and burdens that a child’s chronic illness
has on a family (Stein and Reissman, 1980; see Appendix M). Items reﬂect the ﬁnancial,
personal, social, and familial strain and that can occur as a result of the illness as well as
the parent’s sense of mastery over illness-related problems. Parents indicated how much
they agreed with each statement on a 4-point scale of 1 (strongly agree), 2 (agree), 3
(disagree), 4 (strongly disagree). The scale generated a total score, with lower scores
reﬂecting a greater impact. Good internal consistency was reported by the authors with
the alpha level being .88. For this study, Cronbach alpha was .92. For the purpose of this
study, the Impact on the Family Scale was reverse coded so that high scores indicated
higher levels of illness-related concerns or demands. Table 11 provide the means,
standard deviations, and corrected item-total correlations for these scales.

Parents’ PsychologicLlWell-Being. Depression and anxiety were both examined
in this study. Depression was examined using the Center for Epidemiologic Studies -
Depression (CES-D; Radloff, 1977). This is a 20 item measure assessing the frequency
or duration of cognitive, affective, and behavioral symptoms associated with depression
(See Appendix N). For each item, the parent indicated the frequency or duration with

which he or she has experienced that symptom on a 4-point scale of 0 (rarely or none of

45

Table 9

Pwhometric Properties of the Approach Scale

 

 

Item Item Mean Standard Corrected

Deviation Item-Total
Correlation

I get upset and let me emotions out. 2.37 0.87 0.33

I try to get advice from someone about 2.67 0.93 0.55

what to do.

I concentrate my efforts on doing 3.23 0.77 0.64

something about it.

I discuss my feelings with someone. 3.00 0.86 0.62

I talk with someone to ﬁnd out more about 3.10 0.79 0.71

the situation.

I make a plan of action. 3.10 0.93 0.62

I try to get emotional support from friends 2.96 1.05 0.66

and relatives.

I take additional action to get rid of the 2.88 0.95 0.49

problem.

I let my feelings out. 2.69 0.95 0.64

I talk to someone who could do something 2.92 0.93 0.77

concrete about the problem.

I try to come up with a strategy about what 3.10 0.85 0.61

to do.

I get sympathy and understanding from 2.40 0.95 0.59

someone.

I think about how I might best handle the 3.39 0.71 0.50

problem.

I ask people who have had similar 2.85 1.03 0.58

experiences what they did.

I take direct action to get around the 2.63 1.04 0.42

problem.

I talk to someone about how I feel. 2.84 0.89 0.67

I think hard about what steps to take. 3.28 0.80 0.63

I do what has to be done, one step at a 3.63 0.59 0.36

time.

Alpha = 0.92 Scale Mean = 52.92

Scale SD = 10.09

 

46

Table 10

Psychometric Properties of the Avoidance Scale

 

 

Item Item Mean Standard Corrected
Deviation Item-Total
Correlation
I turn to work or other substitute activities 2.29 1.00 0.41
to take my mind off of things.
I say to myself, “This isn’t real.” 1.32 0.67 0.50
I admit to myself that I can’t deal with it, 1.32 0.65 0.53
and quit trying.
I daydream about things other than this. 1.73 0.87 0.36
I just give up trying to reach my goal. 1.34 0.63 0.62
I refuse to believe that it has happened. 1.22 0.51 0.47
I sleep more than usual. 1.46 0.78 0.28
I give up the attempt to get what I want. 1.52 0.71 0.48
I pretend that it hasn’t really happened. 1.19 0.49 0.5 3
I go to movies or watch tv, to think about 1.69 0.85 0.47
it less. .
I reduce the amount of effort I’m putting 1.54 0.71 0.54
into solving the problem. '
I act as though it hasn’t even happened. 1.25 0.58 0.45
Alpha = 0.82 Scale Mean = 17.86 Scale SD = 4.85

 

 

47

Table 11

Psychometric PrOperties of the Impact on the Family Scale

 

 

Item Item Mean Standard Corrected

Deviation Item-Total
Correlation

The illness is causing ﬁnancial problems for 1.87 0.81 0.7 0

the family.

Time is lost from work because of hospital 2.17 0.89 0.43

appointments.

I am cutting down the hours I work to care 1.90 0.89 0.54

for my child.

Additional income is needed in order to 1.97 0.86 0.52

cover medical expenses.

Because of the illness, we are not able to 1.44 0.68 0.60

travel out of the city.

People in the neighborhood treat us 1.56 0.70 0.60

specially because of my child’s illness.

We have little desire to go out because of 1.54 0.79 0.75

my child’s illness.

It is hard to ﬁnd a reliable person to take 2.21 1.21 0.68

care of my child.

Sometimes we have to change plans about 2.27 0.99 0.68

going out because of my child’s illness.

We see family and friends less because of 1.52 0.68 0.72

the illness.

Because of what we have shared we are a 2.04 0.80 0.04

closer family.

Sometimes I wonder whether my child 2.22 0.96 0.33

should be treated “specially” or the same as

a normal child.

My relatives have been understanding and 1.86 0.77 0.45

helpful with my child.

I think about not having more children 2.04 1.04 0.54

because of the illness.

My partner and I discuss my child’s 1.75 0.70 0.21

problem together.

We try to treat my child as if he/she were a 1.39 0.59 0.35

normal child.

I don’t have much time left over for other 1.85 0.84 0.76

family members after caring for my child.

48

Table 11 (cont’d).

 

 

Item Item Mean Standard Corrected
Deviation Item-Total

Correlation

Our family gives up things because of my 2.15 0.92 0.67

child’s illness.

Fatigue is a problem for me because of my 1.95 0.93 0.74

child’s illness.

I live from day to day and don’t plan for the 1.68 0.79 0.67

future.

Nobody understands the burden I carry. 2.23 0.96 0.67

Traveling to the hospital is a strain on me. 1.98 0.85 0.61

Learning to manage my child’s illness has 2.22 0.74 0.20

made me feel better about myself.

Sometimes I feel like we live on a roller 2.63 0.98 0.54

coaster; in crisis when my child is acutely
ill, OK when things are stable.

Alpha = 0.92 Scale Mean = 46.65

Scale SD = 12.15

 

49

the time/less than one day), 1 (some or a little of the time/one to two days), 2
(occasionally or a moderate amount of time/three to four days) and 3 (most or all of the
time/ﬁve to seven days). Higher scores reﬂected greater distress.

The CES—D demonstrates good internal consistency, with Cronbach alphas
ranging from .84 to .90 (Radloff, 1977; Corcoran & Fisher, 1987). Test-retest scores
range from . 49 (12 month interval) to .51 (2 week interval ) (Radloff, 1977). These
moderate correlations may be a ﬁmction of the test’s instructions as it requires the
individual to respond to the frequency or duration of current depressive symptomatology
(Devins & Orrne, 1985). The CES-D also highly correlates with the Beck Depression
Inventory (r=.87; Santor, Ramsay, & Zuroff, 1995) and is able to discrimate among
different clinical samples (Weisman, Sholomskas, Pottenger, Prusoff, & Locke, 1977) as
well as between clinical and nonclinical samples (Radloff, 1977). See Devins and Orrne
(1985) for a complete review. Cronbach alpha for the CES-D for this study was .92.
Table 12 provides the means, standard deviations, and corrected item-total correlations
for these scales.

Anxiety was measured using the State Trait Anxiety Inventory (STAI;
Spielberger, Gorusch, Lushene, Vagg, & Jacobs, 1970). This is a 40-item measure which
assesses both the level of stable (State) and transitory (Trait) anxiety. For the purpose of
this study, only the Trait scale was administered in order to determine the level of anxiety
the parent had been experiencing (See Appendix O). The Trait scale is made up of 20
items. For each item the parent indicates how he/she “generally feels” using a 4-point

scale of 1 (almost never), 2 (sometimes), 3 (often), and 4 (almost always). Each

50

Table 12

Psychometric Properties of the CES-D

 

 

Item Item Mean Standard Corrected
Deviation Item-Total
Correlation
I was bothered by things that usually don’t 0.39 0.64 0.52
bother me.
I did not feel like eating; my appetite was 0.33 0.61 0.51
poor
I felt that I could not shake off the blues 0.34 0.65 0.70
even with the help from my family and
friends.
I felt I was just as good as other people. 0.58 0.85 0.36
I had trouble keeping my mind on what I 0.59 0.76 0.55
was doing.
I felt depressed. 0.53 0.79 0.77
I felt that everything I did was an effort. 0.59 0.90 0.53
I felt hopeful about the ﬁrture. 0.63 ’ 0.87 0.40
I thought my life had been a failure. 0.17 0.50 0.50
I felt fearful. 0.29 0.61 0.68
My sleep was restless. 0.77 0.88 0.50
I was happy. 0.53 0.71 0.65
I talked less than usual. 0.43 0.58 0.44
I felt lonely. 0.32 0.61 0.60
People were unfriendly. 0.27 0.62 0.50
I enjoyed my life. 0.5 3 0.72 0.62
I had crying spells. 0.32 0.69 0.53
I felt sad. 0.54 0.77 0.63
I felt that people disliked me. 0.26 0.5 5 0.68
I could not get “going”. 0.55 0.74 0.68

Alpha = 0.92 Scale Mean = 8.98

51

Scale SD = 8.69

participant’s score on the Trait scale was then computed into a T-score, according to sex
and age (Speilberger et al., 1983). A higher score indicated greater anxiety.

The STAI-Trait demonstrates good internal consistency with Cronbach alphas
ranging from .89 to .91 and test-retest scores range from .65 to .86. The Trait scale
correlates highly with the Taylor Manifest Anxiety Scale (.80) and with the IPAT
Anxiety Scale (.75). The Trait scale is also able to discriminate between clinical and
nonclinical groups. See Chaplin (1985) for a complete review. The scale demonstrated
good internal consistency with Cronbach alpha being .93. Table 13 provides the means,
standard deviations, and corrected item-total correlations for these scales.

Children’s Psychological Well-Being. In order to examine psychological well-
being in children the Child Behavior Checklist (CBCL; Achenbach, 1991) was used. The
CBCL is a measure of social competence and behavioral/emotional problems of 4-to 18-
year olds and is completed by the parent or guardian (See Appendix P). The CBCL
contains 119 items assessing the degree to which the child has exhibited certain behaviors
over the past six months. The behavior problems are rated on a 3-point scale of 0 (not
true), 1 (somewhat or sometimes true), 2 (very true or often true). The CBCL is
comprised of eight narrow-band factors and two broad-band factors. The narrow-band
factors are labeled Withdrawn, Somatic Complaints, Anxious/Depressed, Attention
Problems, Thought Problems, Social Problems, Delinquent Behavior, and Aggressive
Behavior. The broad-band factors are Intemalizing and Extemalizing. The Intemalizing
category contains Withdrawn, Somatic Complaints, and Anxious/Depressed scales and

the Extemalizing category contains Delinquent Behavior and Aggressive Behavior.

52

Table 13

Psychometric Properties of the STAI - Trait Anxiety

 

 

Item Item Mean Standard Corrected
Deviation Item-Total
Correlation
I felt pleasant. 1.84 0.72 0.60
I felt nervous and restless. 1.82 0.66 0.53
I feel satisﬁed with myself. 2.14 0.77 0.73
I wish I could be as happy as others seem to 1.87 0.89 0.62
be.
I feel like a failure. 1.43 0.57 0.59
I feel rested. 2.70 0.81 0.45
I am “calm, cool, and collected”. 2.46 0.77 0.66
I feel that difﬁculties are piling up so that I 1.66 0.72 0.58
cannot overcome them.
I worry too much over something that really 1.95 0.72 0.59
doesn’t matter.
I am happy. 1.74 0.66 0.75
I have disturbing thoughts. 1.40 0.55 0.63
I lack self—conﬁdence. 1.82 0.73 0.52
I feel secure. 1.76 0.80 0.70
I make decisions easily. 2.24 0.82 0.51
I feel inadequate. 1.62 0.67 0.56
I am content. 1.92 0.74 0.79
Some unimportant thoughts run through my 1.65 0.54 0.46
mind and bothers me.
I take disappointments so keenly that I can’t 1.72 0.66 0.45
them out of my mind.
I am a steady person. 1.88 0.76 0.72
I get in a state of tension or turmoil as I 1.67 0.76 0.62
think over my recent concerns and interests.
Alpha = 0.93 Scale Mean = 37.27 Scale SD = 9.34

 

53

Scores for total competence, total behavior problem and broad-band factors are expressed
as standardized T-scores M = 50, S_D = 10).

Discriminant validity is demonstrated by signiﬁcant differences on all Social
Competence and Behavior Problems scales between referred and nonclinical children.
Internal reliability of the Behavior Problem narrow-band scales range from .62 to .92.
Alphas for the Intemalizing scale and Extemalizing scale are .89 and .93, respectively.
For the Social Competence scale, alphas range from .42 to .64. Test-retest reliabilities
(one week interval) of the Behavior Problem scale were .89 and for the Social
Competence scales was .87 (Achenbach, 1991).

For the purpose of this study, only the total behavior problem score was used
because it represented the amount of problems the child is experiencing rather than
speciﬁc types of problems the child is experiencing (as represented by the Intemalizing
and Extemalizing factors). Internal consistency for this scale was adequate, with a
Cronbach alpha of .96. Table 14 provides the means, standard deviations, and corrected
item-total correlations for these scales.

Metabolic Control. The children’s level of metabolic or blood glucose control
was evaluated with the hemoglobin A1C (HbAIC), or glyclated hemoglobin, values taken at
the time of the child’s clinic visit. This is a commonly used measure which reﬂects the
amount of hemoglobin molecules in red blood cells that have attached, or glycated,
themselves to glucose. The more glucose produced by the body means a higher rate of
glycated hemoglobin. The'hemoglobin stays glycated until the end of the red blood cell’s
life, which is typically 120 days. Therefore, the HbA,C reﬂects the overall metabolic or

glucose control over a period of three to four months (ADA, 1996; Martin et al., 1998;

54

Table 14

Psychometric Properties of the Child Behavior Checklist

 

 

Item Item Mean Standard Corrected
Deviation Item-Total
Correlation
Acts to young for his/her age. 0.31 0.51 0.49
Allergy 0.47 0.75 0.13
Argues a lot 0.87 0.69 0.53
Asthma 0.17 0.48 0.32
Behaves like the opposite sex 0.11 0.41 0.22
Bowel movements outside toilet 0.07 0.25 0.28
Bragging, boasting 0.41 0.58 0.40
Can’t concentrate, can’t pay attention for 0.38 0.63 0.58
long ‘
Can’t get his/her mind off certain thoughts; 0.40 0.63 0.61
obsessions
Can’t sit still, restless, or hyperactive 0.27 0.51 0.66
Clings to adults or too dependent 0.20 0.43 0.33
Complains of loneliness 0.20 0.48 0.39
Confused or seems to be in a fog 0.14 0.38 0.52
Cries a lot 0.20 0.45 0.42
Cruel to animals 0.04 0.21 0.52
Cruelty, bullying, or meanness to others 0.19 0.47 0.55
Day-dreams or gets lost in his/her thoughts 0.32 0.56 0.51
Deliberately harms self or attempts suicide 0.01 0.10 0.45
Demands a lot of attention 0.49 0.71 0.67
Destroys his/her own things 0.11 0.35 0.68
Destroys things belonging to his/her family 0.13 0.37 0.64
Disobedient at home 0.36 0.53 0.63
Disobedient at school 0.16 0.45 0.40
Doesn’t eat well 0.33 0.56 0.28
Doesn’t get along with other kids 0.21 0.44 0.64
Doesn’t seem guilty after misbehaving 0.27 0.54 0.63
Easily jealous 0.34 0.58 0.48
Eats or drinks that are not food 0.10 0.34 0.37
Fears certain animals, situations, or places 0.28 0.56 0.49
other than school
Fears going to school 0.03 0.18 0.41
Fears he/she might think or do something 0.11 0.35 0.38

bad

55

 

 

Table 14 (cont’d).

 

 

Item Item Mean Standard Corrected
Deviation Item-Total
Correlation
Feels he/she has to be perfect 0.40 0.63 0.25
Feels or complains that no one loves 0.24 0.50 0.54
him/her
Feels others are out to get him/her 0.11 0.32 0.57
Feels worthless or inferior 0.24 0.46 0.45
Gets hurt a lot, accident prone 0.16 0.42 0.59
Gets in many ﬁghts 0.08 0.27 0.56
Gets teased a lot 0.27 0.54 0.45
Hangs around with others who get in trouble 0.10 0.30 0.27
Hears sounds or voices that aren’t there 0.00 0.00 0.00
Impulsive or acts without thinking 0.41 0.60 0.64
Would rather be alone than with others 0.27 0.56 0.49
Lying or cheating 0.26 0.49 0.45
Bites ﬁngernails 0.36 0.64 0.21
Nervous, highstrung, or tense 0.31 0.59 0.72
Nervous movements or twitching 0.11 0.38 - 0.49
Nightmares 0.23 0.43 0.31
Not liked by other kids 0.13 0.37 0.65
Constipated, doesn’t move bowels 0.03 0.18 0.36
Too fearﬁrl or anxious 0.18 0.44 0.62
Feels dizzy 0.18 0.41 0.40
Feels too guilty 0.12 0.36 0.32
Overeating 0.30 0.51 0.31
Overtired 0.32 0.52 0.56
Overweight 0.22 0.49 0.09
Physical problems without known medical
cause:
a. aches or pains 0.22 0.49 0.49
b. headaches 0.38 0.55 0.43
c. nausea, feels sick 0.27 0.51 0.42
(1. problems with eyes 0.16 0.45 0.23
e. rashes or other skin problems 0.30 0.62 0.32
f. stomachaches or cramps 0.37 0.57 0.40
g. vomiting, throwing up 0.08 0.27 0.32
h. other 0.02 0.21 0.21
Physically attacks people 0.10 0.34 0.66
Picks nose, skin, or other parts of body 0.20 0.48 0.31
Plays with own sex parts in public 0.02 0.15 0.20

56

Table 14 (cont’d).

 

 

Item Item Mean Corrected
Deviation Item-Total
Correlation
Plays with own sex parts too much 0.01 0.10 0.20
Poor school work 0.21 0.49 0.20
Poorly coordinated or clumsy 0.17 0.43 0.60
Prefers being with older kids 0.43 0.60 0.35
Prefers being with younger kids 0.26 0.49 0.60
Refuses to talk 0.21 0.44 0.22
Repeats certain acts over and over; 0.07 0.33 0.60
compulsions
Runs away from home 0.00 0.00 0.00
Screams a lot 0.17 0.46 0.49
Secretive, keeps things to self 0.29 0.52 0.43
Seen things that aren’t there 0.03 0.23 0.44
Self-conscious or easily embarrassed 0.38 0.5 3 0.21
Sets ﬁres 0.01 0.11 -0.05
Sexual problems 0.01 0.1 1 0.12
Showing off or clowning around 0.51 0.64 0.57
Shy or timid 0.40 0.54 0.08
Sleeps less than most kids 0.19 0.49 0.51
Sleeps more than most kids during day 0.17 0.46 0.18
and/or night
Smears or plays with bowel movements 0.02 0.21 0.44
Speech problems 0.10 0.40 0.40
Stares blankly 0.09 0.32 0.48
Steals at home 0.06 0.23 0.39
Steals outside the home 0.03 0.18 0.14
Stores things he/she doesn’t need 0.24 0.53 0.58
Strange behavior 0.07 0.33 0.39
Strange ideas 0.10 0.37 0.51
Stubborn, sullen, or irritable 0.64 0.64 0.64
Sudden changes in mood or feelings 0.64 0.68 0.65
Sulks a lot 0.28 0.47 0.51
Suspicious 0.08 0.27 0.64
Swearing or obscene language 0.17 0.43 0.39
Talks about killing self 0.06 0.27 0.51
Talks or walks in sleep 0.20 0.50 0.49
Talks too much 0.37 0.61 0.52
Teases a lot 0.24 0.48 0.31
Temper tantrums or hot temper 0.40 0.61 0.68

57

Table 14 (cont’d).

 

 

Item Item Mean Standard Corrected
Deviation Item-Total
Correlation
Thinks about sex too much 0.03 0.23 0.20
Threatens people 0.07 0.29 0.67
Thumb-sucking 0.07 0.33 0.18
Too concerned with neatness or cleanliness 0.03 0.18 -0.03
Trouble sleeping 0.22 0.51 0.56
Truancy, skips school 0.02 0.15 0.01
Underactive, slow moving, or lacks energy 0.19 0.42 0.25
Unhappy, sad, or depressed 0.30 0.55 0.57
Unusually loud 0.21 0.49 0.66
Uses alcohol or drugs for nonmedical 0.04 0.26 0.45
purposes '
Vandalism 0.02 0.15 0.23
Wets self during the day 0.16 0.45 0.25
Wets the bed 0.00 0.00 0.00
Whining 0.31 ' 0.53 0.53
Wishes to be the opposite sex 0.01 0.11 0.24
Withdrawn, doesn’t get involved with others 0.19 0.42 0.45
Worries 0.47 0.54 0.64
Alpha = 0.96 Scale Mean = 24.78 Scale SD = 23.29

 

58

Peyrot et al., 1999). It should noted, though, that this value is not sensitive to acute crises
or extreme periods of poor metabolic control but rather reﬂects an average of the
metabolic control over the past few months (Keith Dveirin, M.D., personal
communication, August, 2000). The testing of glycated hemoglobin was completed by
various labs and each lab had its own range of what is considered normal glycated
hemoglobin values. As a result, the values needed to be standardized by computing a
percentage; each HbAIC value was divided by the upper limit of its respective lab’s

normal range and then multiplied by the upper limit of the normal range (6.0) proposed

 

by the Diabetes Control and Complications Trial (Bruce Wilson, M.D., personal

I

communication, November, 1998). Higher HbAIC values indicate poor metabolic or
blood glucose control.

In order to examine effects of the predictor on metabolic control, only data from
children who had an HbA1c value taken either three months (90 days) prior or three
months (90 days) after the completion of the questionnaires by their parents were
included in the analyses. As mentioned earlier, the HbA1c value is a reﬂection of the
child’s metabolic control over the previous three to four months. Therefore, it was
believed that the HbA“, values falling within this time period would serve as appropriate
indicators of the possible concurrent effects that family functioning, illness-related
stressors, psychological well-being could have on metabolic control. Of the 107 children
participating in this study, 62 children had a reading taken up to three months prior to the
completion of the questionnaires and 58 children had a reading taken up to three months

after the completion of questionnaires. If more than one HbA1c value was available for

59

each child, the value closest to the completion date was chosen to use in these analyses
(N=75).

In order to examine the potential effects that metabolic control could have on
family functioning, illness-related stressors, and psychological well-being, only the data
from children who had both an HbA1c value taken six months (180 days) prior to (pre-test
value) and an HbA1c value taken at least four to six months (180 days) after (post-test
value) the completion of the questionnaires were included in the analyses. Out of the 107
children participating in this study, 88 children had a value taken up to six months prior
to the completion of the questionnaires whereas 36 children had a value taken four to six
months after the completion of the questionnaires. If more than one value was available
for either the pre- or post-test value, the value closest to the completion date was chosen.
33 children met these criteria. Of these 33 children, there was complete data from only
27 mothers and 7 fathers. Because of the small sample size of fathers, only the data from
the mothers were used in the analyses.

Scoring Revision. To ensure that as many participants’ data were included in the
analyses as possible, mean item scores were used to account for missing data. Mean
items scores were used for all measures except for metabolic control and the CBCL. In
order to determine the mean item score the following steps were taken for each
participant on each scale. First, the total score was determined for each participant by
summing the scores of the items to which the participant responded. Second, this total
score was then divided by the number of items in that scale in order to determine the

average, or mean, of the item scores. These mean scores were then used in the analyses.

60

Data Analyses

Hypotheses regarding the relationships between family functioning, coping
strategies, and illness-related concerns or demands and parental adjustment (Hypotheses
1 through 6) were tested using Pearson correlations. Pearson correlations were also used
to test the hypothesized. relationships between family functioning and illness-related
concerns or demands and children’s adjustment (Hypotheses 7 through 10). The
relationship between children’s psychological well-being and metabolic control
(Hypothesis 11) was tested using Pearson correlations as well. Multiple regressions were
used to determine if illness-related concems or demands was a mediating variable
between dimensions of family functioning and parental and child adjustment (Hypothesis
12). The details of this analysis strategy, as outlined by Baron and Kenny (1986), are
described below in the Results section. In order to examine the direction of the
relationships between metabolic control and the psychosocial variables (Hypothesis l3),
partial correlations were used. Finally, Pearson correlations were used to examine the
potential relationships between children’s age and the psychosocial variables,
psychological-well-being, and children’s adjustment, respectively. They were also used
to examine illness duration and the psychosocial variables, and children’s adjustment,
respectively (Hypothesis 14). Please refer to Table 1 which contains a complete outline

of the measures and statistical analyses used for each of the hypotheses.

61

RESULTS

Tables 15 and 16 provide the results of the univariate correlations amongst the
predictor variables for mothers and fathers. Below are the results for the hypotheses
proposed for this study.

Family Functioning and Parents’ Psychological Well-Being

Pearson correlations were used to assess the relationships between family
functioning and parental psychological well-being. It was predicted that parents from
families low in cohesion and expressiveness and high in conﬂict would be more likely to
experience distress. These hypotheses were partly supported. As seen in Table 17,
mothers were more likely to experience symptoms of depression and anxiety when their
families exhibited low levels of cohesion and expressiveness and high levels of conﬂict.
Fathers, however, were not as affected by these dimensions; no signiﬁcant relationships
were found between cohesion, expressiveness, conﬂict and paternal depression or
anxiety.

In order to determine if there were signiﬁcant differences between the correlations
obtained for mothers and fathers, Fisher’s Z coefﬁcients were calculated. As seen in
Table 18, signiﬁcant differences were found between the correlation for maternal
depression and expressiveness and the correlation for paternal depression and
expressiveness. No other signiﬁcant differences were found for the other family
functioning dimensions.

Coping Strategies and Parents’ Psychological Well-Being
In order to assess the relationships between coping strategies and maternal and

paternal psychological well-being Pearson correlations were used. As expected, mothers

62

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Table 18

Fisher’s Z Coefﬁcients for Comparisons Between Mothers and Fathers

 

Cohesion Expressiveness Conﬂict Approach
CES—D -1.635 -2.065* 0.89 -1.810
STAI-Trait -1.400 -2.335* 1.525 -2.530*

 

*a<.05

66

were more likely to experience symptoms of depression and anxiety when they relied to a
lesser extent on Approach coping strategies. Similarly, mothers were more likely to
experience psychological distress when they relied to a greater extent on Avoidance
coping strategies. Fathers, on the other hand, were more likely to experience depression
and anxiety when they relied to a greater extent on Avoidance c0ping strategies (See
Table 17). No signiﬁcant relationships were found for paternal psychological well-being
and Approach coping strategies.

Additional analyses were conducted to determine if there were signiﬁcant
differences between the correlations for mothers and fathers psychological well-being and
Approach coping. According to the results of the Fisher’s Z computations, only a
signiﬁcant difference was found between the correlation for maternal anxiety and
Approach coping and the correlation for paternal anxiety and Approach coping (See
Table 18).

Illness-Related Concems or Demands and Parents’ Psychologgal Well-Being

The relationship between illness-related concerns or demands faced by families
with a diabetic child and parental well-being were assessed using Pearson correlations.
The hypothesis that the more a family was affected by illness-related stressors, the more
distressed parents would be was supported. The results indicated that both mothers and
fathers experienced symptoms of depression and anxiety when their families experienced

higher degrees of illness—related concerns or demands (See Table 17).

 

Famin Functioning, Children’s Psychological Well-Being, and Metabolic Control
As discussed in the Method section, only data from children who had an HbAlc

value taken either three months (90 days) prior or three months (90 days) after the

67

completion of the questionnaires by their parents were included in the analyses (N=75).

It was believed that the _HbA,c values falling within this time period would serve as
appropriate indicators of the possible effects that the examined psychosocial factors could
have on metabolic control.

The relationship between aspects of family functioning and children’s
psychological well-being were also assessed using Pearson correlations (See Table 19).
The prediction that low family cohesion and expressiveness and high family conﬂict
would be signiﬁcantly related to psychological problems in children was partially
supported. According to the mothers’ report, children were more likely to have
behavioral or emotional problems when their families were low in cohesion and high in
conﬂict. Though no signiﬁcant relationship was found between family expressiveness
and psychological well-being, results indicated that the relationship Was in the
hypothesized direction (r=~0.l9, p=0.054). Analyses using the fathers’ data indicated
that children from families characterized by low levels of expressiveness were
signiﬁcantly more likely to have problems. Similar to the results found using the
mothers’ data, the relationships between family cohesion and conﬂict and psychological
well-being, though not signiﬁcant, were in the predicted direction (r=-0.30, p=—0.067 and
F026, p=0.098, respectively).

The prediction that low levels of family cohesion and expressiveness and high
levels of family conﬂict would be associated with poor metabolic control was partially
supported. According to the results of the Pearson correlations, mothers’ report of high
family conﬂict was signiﬁcantly related to poor metabolic control in children. No other

ﬁndings were signiﬁcant (See Table 19).

68

Table 19

Pearson Correlations for Psychosocial Factors and Children’s Psychological Well-BCLng and

 

 

Metabolic Control
Family Functioning Illness-related
Concerns or
Demands
Cohesion Expressiveness Conﬂict Impact on the
Family
Mothers’ Report
CBCL -0.31** -0.19 0.24* O.44**
(75) (75) (75) (75)
HbA1c —0.02 -0. l 3 023* 0.08
(74) (74) (74) (74)
Fathers’ Report
CBCL -0.30 -0.66** 0.26 032*
(27) (27) (27) (27)
H’bA1C -0.01 -0.08 -0.20 0.05
(27) (27) (27) (27)

 

**p<.Ol, *p<.05

69

Illness-Related Concerns or Demands aynd Children’s Psychological Well-Being, and
Metabolic Control

It was predicted that children whose families were affected by illness-related
concerns or demands would be more likely to experience behavioral and emotional
problems. This hypothesis was partially supported. According to both mothers’ and
fathers’ reports, children were more likely to experience problems if their families were
greatly affected by illness-related concerns or demands. The prediction that children
whose families were affected by illness-related concerns or demands would be
signiﬁcantly less likely to maintain proper metabolic control was not supported (See
Table 19).
Relationship Between Children’s Psychological Well-Being and Metabolic Control

The prediction that children with behavioral and emotional problems would be
more likely to have poor metabolic control was not supported by either the mothers’
(r=-.06, n.s.) or fathers’ (r=.11, <n.s.) reports.
Association Between Metabolic Control and Family Functioning, Controlling for Pre—
Test Metabolic Control

Because of this study’s design it was not possible to directly assess the direction
of the relationship between metabolic control and the psychosocial variables. Instead,
partial correlation analyses were conducted to determine if dimensions of family
functioning and illness-related concerns or demands account for any change in metabolic
control over time.

As previously discussed, only the data from children who had both an HbA1c

value taken six months (180 days) prior to (pre-test value) and an HbA1c value taken four

70

to six months (180 days) after (post-test value) the completion of the questionnaires were
included in the analyses (N=27). Values taken prior to the completion of the
questionnaires were controlled for in these analyses. Table 20 contains the correlations
among the variables based on the mothers’ report. Analyses were not conducted using
fathers’ report due to the small sample size. As seen in Table 21, none of the results were
signiﬁcant. These non-signiﬁcant results suggested that there was no relationship
between the psychosocial variables of family functioning and illness-related concerns or
demands and changes over time in metabolic control.
Mecﬁttion Model Analyses

Baron and Kenny’s (1986) model for testing the mediation effect was used to
examine these hypotheses. This model is tested using multiple regression analyses.
According to Baron and Kenny, three steps are involved in testing the mediation model
when using three variables. To clarify, the followmg example is given. It is proposed
that variable B mediates the relationship between variables A and C. In order to test this
hypothesis, the ﬁrst step is to determine if there is a signiﬁcant relationship between
variables A and B. The second step is to determine if there is a signiﬁcant relationship
between variables B and C. The ﬁnal step in testing this model is to examine whether the
hypothesized mediation variable, B, explains the relationship between variables A and C.
When variable B is entered into the model (and controlled for), the relationship between
A and C is expected to become non-signiﬁcant. This non-signiﬁcant result demonstrates
that the relationship between A and C is mediated by their relationships with B.

In this study, the ﬁrst step was to determine if there was a signiﬁcant relationship

between illness-related concerns or demands and well-being (be it maternal depression,

71

 

 

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72

Table 21

Partial Correlation Coefﬁcients Controlling for Pre-Test HbAlc Value Based on Mothers’

 

Rgport
Family Functioning Illness-related
Concerns or
Demands
Cohesion Expressiveness Conﬂict Impact on the
Family

HbA1c 0.12 -0.05 0.09 0.19
Post-Test Value (29) (29) (29) (29)

 

**p<.01, *p<.05

73

maternal anxiety, etc.). The second step was to determine if there was a signiﬁcant
relationship between the proposed mediation variable (e.g., farme cohesion,
expressiveness, conﬂict or approach, avoidance coping) and well-being. The ﬁnal step
was to determine whether the proposed mediation variable explained the relation between
illness-related concerns or demands and well-being. When the mediation model was
entered into the model (and controlled for), the relation between illness-related concerns
or demands and well-being was expected to become non—signiﬁcant. If a non-signiﬁcant
result was obtained, it demonstrated that the relation between the illness-related concerns
or demands and well-being was due the mediation variable in question.

Mediation Model for Mothers. As stated above, univariate correlations revealed

 

signiﬁcant relationships between the three dimensions of family functioning and the two
styles of c0ping strategies with the psychological well-being of mothers. Therefore, each
of these variables was examined using separate mediation models. Tables 22 through 26
report the results of the mediation model analyses. Contrary to predictions, though, none
of the psychosocial variables served as mediators for illness-related stressors and
maternal psychological well-being. Notably, as illustrated in Table 24, results indicated
that illness-related concerns or demands served as a mediating variable for family conﬂict
and maternal depression instead.

Mediation Model for Children. According to the results of the univariate
correlations conducted on the mothers’ report, illness-related concerns or demands as
well as family cohesion and conﬂict were signiﬁcantly related to children’s psychological

well-being. Therefore, the mediation model analyses were conducted on these particular

psychosocial variables respectively (See Tables 27 and 28). Neither predicted mediation

74

Table 22

Standardized Regression Coefﬁcients for Family Cohesion as a Mediator of Illness-

Related Concerns or Demands and Maternal Psychological Well-Being

 

CBS-D
Predictor Beta Beta R2 Change
Step 1 Step2 Step 1
Model 1 Impact on the Family 0.53** 0.28**
Model 2 Impact on the Family 0.42**
Cohesion -0.23**
STAI-
Trait
Predictor Beta Beta R2 Change
Step 1 Step 2 Step 1
Model 1 Impact on the F arnily O.44** 0. 19**
Model 2 Impact on the Family 0.31**
Cohesion -0.30**

R2 Change
Step 2

0.04**

R2 Change

Step 2

0.07**

 

**p<.01, *p<.05

75

Table 23

Standardized Regression Coefﬁcients For Family Expressiveness as a Mediator of

Illness-Related Concerns or Demands and Maternal Psychological Well-Being

 

CBS-D
Predictor Beta Beta R2 Change R2 Change
Step 1 Step 2 Step 1 Step 2
Model 1 Impact on the Family 0.52** 0.28**
Model 2 Impact on the Family 0.39**
Expressiveness -0.32** .09**
STAI-
Trait
Predictor Beta Beta R2 Change R2 Change
Step 1 Step 2 Step 1 Step 2
Model 1 Impact on the Family O.44** 0.19**
Model 2 Impact on the Family 0.26**
Expressiveness -0.45 ** 0.17**

 

**p<.01, *p<.05

76

Table 24

Standardized Regression Coefﬁcients for Family Conﬂict as a Mediator of Illness-

 

Related Concerns or Demands and Maternal Psychologiaal Well-Being

 

CES-D

Model 1

Model 2

STAI-
Trait

Model 1

Model 2

Beta
Step 1

Predictor

Impact on the Family 0.52**
Impact on the Family

Conﬂict

Beta
Step 1

Predictor

Impact on the Family O.44**
Impact on the Family

Conﬂict

Beta
Step 2

0.48**

0.09

Beta
Step 2

0.31**

0.34**

R2 Change
Step 1

0.27**

R2 Change
Step 1

0.19**

R2 Change
Step 2

0.01

R2 Change

Step 2

0.10**

 

**p<.01, *p<.05

77

Table 25

Standardized Rear: ession Coefﬁcients for Approach Coping as a Mediator of Illness-

 

Related Concerns or Demands and Maternal PsychologicﬁWell-Being

 

CBS-D

Model 1

Model 2

STAI-
Trait

Model 1

Model 2

Predictor

Impact on the Family

Impact on the Family

Approach

Predictor

Beta
Step 1

0.53**

Beta
Step 1

Impact on the Family O.44**

Impact on the Family

Approach

Beta
Step 2

0.43**

-0.30**

Beta
Step 2

0.32**

-0.39**

R2 Change
Step 1

0.28**

R2 Change
Step 1

0.19**

R2 Change
Step 2

0.08**

R2 Change

Step 2

0.14**

 

**p<.01, *p<.05

78

 

Table 26

Standardized Regression Coefﬁcients for Avoidance Copingas a Mediator of Illness-

Related Concerns or Demands and Maternal Psychological Well-Being

 

CES-D

Model 1

Model 2

STAI-
Trait

Model 1

Model 2

Predictor Beta
Step 1

Impact on the Family 0.53**

Impact on the Family

Avoidance Coping

Predictor Beta
Step 1

Impact on the Family O.44**
Impact on the Family

Avoidance Coping

Beta
Step 2

0.41**

0.35**

Beta
Step 2

0.27**

0.52**

R2 Change
Step 1

0.28**

R2 Change
Step 1

0.19**

R2 Change
Step 2

O.ll**

R2 Change

Step 2

0.24**

 

**p<.01, *p<.05

79

model was supported. Again, illness-related concerns or demands appeared to serve as a
mediator for the relationships between family cohesion and conﬂict and children’s
psychological well-being.

Overall, results of the mediation models for mothers and children provided little
support for the proposed models. Instead, the results indicated that illness-related
concerns or demands served as a mediating variable between dimensions of family
functioning and coping strategies and child and parental well-being.

Exploratory Analyses About Developmental Processes

Pearson correlations were used to examine the relationships between children’s
age and the psychosocial variables, emotional and behavioral problems, and metabolic
control, respectively. In addition the relationships between illness duration and the
psychosocial variables, emotional and behavioral problems, and metabolic control,
respectively, were examined. Results were obtained using both mothers’ and fathers’
reports (see Table 29). According to the mothers’ report, children’s age was signiﬁcantly
related with illness-related concerns or demands whereas according to the fathers’ report,
children’s age was signiﬁcantly related to not only illness-related concerns or demands
but family conﬂict as well. The results indicated that families who experienced fewer
illness-related concerns or demands were more likely to have an older child with diabetes.
In addition, the results suggested that, according to fathers, families higher in conﬂict
were more likely to have a young child with diabetes. No signiﬁcant ﬁndings were

found for illness duration.

80

Table 27
Standardized Regression Coefﬁcients for F amily Cohesion as a Mediator of Illness-

Related Concerns or Demands and Children’s Psychological Well-Being (Mothers’

 

Report)
CBCL
Predictor Beta Beta R2 Change R2 Change
Step 1 Step 2 Step 1 Step 2
Model 1 Impact on the Family O.44** O.44**
Model 2 Impacton the Family 0.37**
Cohesion -0.20 0.47

 

**p<.01, *p<.05

81

Table 28
Standardized Regression Coefﬁcients for F @Y Conﬂict asga Meﬁrtor of Illness-

Related Concerns or Demands and Children’s Psychological Well-Being (Mothers’

 

Report)
CBCL
Predictor Beta Beta R2 Change R2 Change
Step 1 Step 2 Step 1 Step 2
Model 1 Impact on the F arnily O.44** O.44**
Model 2 Impact on the Family 0.40**
Conﬂict 0.13 0.45

 

**p<.01, *p<.05

82

Table 29

Correlation Coefﬁcients for Children’s Age, Illness Duration, Predictor Variables, and

Outcome Variables

 

Children’s Age

Illness Duration

 

Mothers’ Report
Cohesion -0.01 0.02
(105) (104)
Expressiveness 0.08 -0.04
(104) (103)
Conﬂict -0. l 2 -0.01
(104) (103)
Impact on the Family 025* 0.02
(105) (104)
CBCL —0.14 0.09
(104) (103)
HbA1c value 0.19 0.17
(74) (73)
Fathers’ Report

Cohesion 0.08 -0.08
(35) (3 5)
Expressiveness 0.15 -0.15
(35) (35)
Conﬂict -0.36* -0. l 3
(35) (3 5)
Impact on the Family -0.41* 0.02
(35) (35)
CBCL -0.27 0.17
(3 5) (35)
HbA1c value 0.07 -0.11
(27) (27)

*p<.05

83

DISCUSSION

The purpose of this study is to examine the effects of psychosocial factors on the
well-being of children with diabetes and their parents. Speciﬁcally, this study examines
the role of family functioning, coping strategies, and illness-related stressors on the
psychological well-being of parents. Additionally, it examines the role of family
functioning and illness-related stressors on the physical and psychological well-being of
children with diabetes. This study builds upon and extends previous research examining
the effects of such factors on children with chronic health conditions and their parents.
Major Findings for Parents

It was hypothesized that low levels of family cohesion and expressiveness and
high levels of family conﬂict would be related to increased psychological distress in
parents. These hypotheses were partially supported. Maternal psychological well-being
was related to these dimensions of family functioning such that they were signiﬁcantly
more likely to experience symptoms of depression and anxiety. These results provide
support for previous studies which have also shown that low levels of family cohesion,
expressiveness, support, control and high levels of family conﬂict were associated with
maternal psychological distress and physical complaints (Blankfeld & Holahan, 1996;
Tirnko et al., 1992; Thompson et al., 1992; Thompson et al., 1994; Thompson et al.,
1994; Wallander et al., 1989).

The psychological well-being of fathers, on the other hand, was not related to
these dimensions as no signiﬁcant relationships were found for either depression or
anxiety. Additional analyses revealed that when the results examining the relationship

between cohesion and conﬂict, respectively, and maternal psychological well-being were

84

compared with the results examining the relationships between cohesion and conﬂict,
respectively, and paternal psychological well-being there were no signiﬁcant differences.

On the other hand, further analyses comparing the relationships between
expressiveness and maternal psychological well-being with the relationships between
expressiveness and paternal psychological well-being indicated signiﬁcant differences.
These ﬁndings suggest that mothers and fathers differ in how sensitive they are to family
expressiveness. To review, expressiveness refers to the extent to which the family is
encouraged to express their thoughts, feelings, opinions, etc. According to research on
gender differences, women are said to be emotionally-expressive (Eagly & Wood, 1991,
Ptacek, Smith, & Zanas, 1992). It may be that mothers are in more need of having the
opportunity to express themselves within the family than are fathers; that is, the
psychological well-being of mothers may. be more affected by their ability to share or
communicate their thoughts and concerns or to express their emotions with other family
members. For fathers, their psychological well-being may be dependent on factors other
than family functioning including spousal and children’s well-being (Chaney et al., 1997;
Nagy & Ungerer, 1990), and, as found in this study, coping strategies, and illness-related
concerns or demands.

The coping strategies employed by mothers and fathers were examined as well. It
was hypothesized that parents who were less likely to use Approach coping strategies or
more likely to use Avoidance COping strategies were more likely to experience
psychological distress. Again, partial support was found for these hypotheses. Indeed,
mothers were more likely to experience symptoms of depression and anxiety when they

relied to a lesser extent on Approach coping strategies or to a greater extent on Avoidance

85

 

coping strategies. Although no signiﬁcant results were found for Approach coping
strategies and paternal psychological distress, results indicated that fathers who relied to a
greater extent on Avoidance coping were more likely to experience anxiety. Overall,
these ﬁndings provide partial support for the several studies which indicate that
Approach-focused coping is related to healthful adjustment whereas Avoidance-focused
coping is related to poor adjustment in parents of children with chronic health conditions
(Blankﬁeld & Holahan, 1996; Hauser et al., 1993; Holmbeck et al., 1997; Tirnko et al..,
1992; Thompson et al., 1994).

Interestingly, additional analyses revealed that the relationships between
Approach coping and maternal anxiety and Approach coping and paternal anxiety were
signiﬁcantly different. These results suggest that mothers could be more affected than
fathers by the extent to which they use Approach coping strategies when managing
diabetes-related stressors. As previously discussed, mothers are typically more involved
with their children’s care than are fathers. Optimal diabetes treatment requires a great
deal of information seeking, problem-solving, and taking action on the parent’s part. If
mothers are not relying to a great extent on these strategies, they may, for example, be
less prepared and feel overwhelmed by the responsibilities involved in their children’s
care. Relatedly, father’s level of anxiety was signiﬁcantly affected by reliance on
Avoidance coping strategies when managing problems and emotions related to their
child’s diabetes. A father’s reliance on Avoidance coping strategies in this context may
potentiate anxiety because these strategies are counterproductive, potentially jeopardizing
the child’s health. It is conceivable, however, that fathers may experience symptoms

of anxiety when using Avoidance coping strategies for diabetes-related stressors due to

86

 

reasons of socialization. According to research on gender differences in coping styles,
men tend to use problem-focused coping strategies such as seeking out information,
problem-solving, and taking action (Ptacek et al., 1992). Avoidance coping strategies do
not incorporate such strategies, therefore, if fathers used them to a great extent it may be
incongruent to how they typically manage stress and, thus, be even more ineffective at
reducing their anxiety.

In regard to examining the impact of chronic health conditions on adjustment, the
majority of previous research has either assumed that the mere presence of the chronic
health condition is the stressor or employed measures of daily hassles or life events to
reﬂect the stressor. The ﬁndings of these studies have been equivocal. This study
attempted to improve on these studies by employing a measure that outlined illness-
related concerns or demands faced by families in which there is a child with a chronic
health condition. It was proposed that these speciﬁc stressors would affect parental
psychological well-being. Support was found for this hypothesis. Both mothers and
fathers were more likely to experience symptoms of depression and anxiety when their
families were affected by illness-related concerns or demands. The results of these
analyses are comparable to the results examining the effects of family functioning,
particularly on maternal psychological well-being. Although similar results were not
found for paternal psychological well-being, there is an indication that fathers are
nevertheless affected by the strain that diabetes can have on them ﬁnancially, personally,
and socially, if not familially. Notably, these ﬁndings are comparable to studies that have

incorporated similar types of measures (Quittner et al., 1992; Wysocki et al., 1989) and

87

provide support for the utility of measuring illness-related concerns or demands in studies
examining familial adjustment.

The conclusions made regarding the psychological well-being of fathers are only
speculative, however, and should be interpreted with caution. Notably, the measures used
in this study may have failed to validly measure the psychological well-being fathers.
First, research indicates that the prevalence of depression is lower than it is in women
(Weissman, Bruce, Leaf, Holzer, 1991; as cited in Silverstein, 1999). Second, results of
gender differences in social behavior suggest that men are emotionally controlled (Eagly
& Wood, 1991). Therefore, it is conceivable that the fathers in the study may have not
highly endorsed items that measure psychological well-being, subsequently affecting the
results of this study.

Methodological considerations also need to be addressed when interpreting the
results of fathers in this study. Indeed, the small sample size of fathers increases the
likelihood of making a Type II error when interpreting the results of this study. In
addition, the generalizability of the results of this study is limited by the fact that there
may be unique characteristics innate to the fathers who chose to participate as opposed to
fathers who chose not to participate. Future studies would need to be conducted with a
larger sample size of fathers in order to determine the relationship between family
functioning and paternal adjustment.

Mai or Findings for Children

It was proposed that low levels of family cohesion and expressiveness and high

levels of family conﬂict would be related to behavioral and emotional problems in

children with diabetes. These hypotheses were partly supported. Indeed low levels of

88

 

family cohesion and high levels of family conﬂict as reported by mothers were associated
with psychological problems in children. Conversely, low levels of family
expressiveness as reported by fathers were related to psychological problems in children.
Of importance, however, is that although the results regarding mothers’ report of family
expressiveness and fathers’ report of family cohesion and conﬂict did not reach levels of
signiﬁcance, they were in the predicted direction. Overall, the results support the
conclusions from previous studies which indicate that family functioning does indeed
relates to the psychological well-being of children with diabetes (e.g., Hanson et a1. 1992;
Hauser et al., 1985; Safyer et al., 1993).

Based on the ﬁndings of previous research on family ﬁmctioning and metabolic
control (e.g., Auslander et al., 1993; Hanson et al., 1989; Jacobson et al., 1994), it was
expected that low family cohesion and expressiveness and high family conﬂict would be
signiﬁcantly related to poor metabolic control. Limited support was found in this study,
however, for these hypotheses. Results indicated that only high levels of family conﬂict
as reported by mothers were related to poor metabolic control. It was proposed that
children living in family environments in which there is a lot of expressed anger and
conﬂict among family members is particularly stressful. This stress can have both direct
physiological effects and indirect effects (e. g., by affecting treatment adherence) on the
child resulting in subsequent poor metabolic control. It appears that extent to which a
family is conﬂicted may be more inﬂuential in the child’s health rather than the extent to
which a family is supportive, engaged, and expressive.

It was also hypothesized that children’s psychological well-being and ability to

maintain optimal metabolic control would be compromised by the personal, ﬁnancial,

89

social, and familial strains that can occur in their families. Results indicated that similar
to their parents, children are affected by the impact that the diabetes has on their families;
that is, based on the reports of mothers and fathers, children were more likely to exhibit
behavioral and emotional problems when their families were affected by illness-related
concerns or demands. Support was not found, however, for the effects of illness-related
concerns or demands on metabolic control. Nor was support found for the proposed
relationship between children’s psychological well-being and metabolic control.

The lack of signiﬁcant ﬁndings in this study regarding metabolic control are
surprising given the. extensive research which indicates that aspects of family functioning
and psychological well-being are in fact related to metabolic control. The results of this
study may have been affected by the small sample size. Another methodological
consideration is that the dimensions of family functioning examined in this study.
Although support was found for family conﬂict, perhaps dimensions of family
functioning other than those that reﬂect family relationships would be better predictors of
metabolic control. These include the system maintenance dimensions, organization and
control. Brieﬂy, organization refers to how well planned or organized are the family’s
activities. Control refers to the extent to which rules are enforced in the family (Moos &
Moos, 1994). Both of these dimensions would be critical in regard to maintaining
treatment adherence (e. g., making sure blood glucose levels are tested, making sure that
insulin is injected in a timely manner, making sure that the child is eating properly) and,
therefore, subsequent metabolic control.

Another possibility regarding the insigniﬁcant ﬁndings for metabolic control may

have been the measure of metabolic control used in this study; the HbAlc value. This

90

value is an overall measure of how well maintained was the child’s blood glucose over
the past few months. What this measure does not capture, though, are the daily variations
in blood glucose levels that can result from adherence or nonadherence to prescribed
treatment regimen (e.g., blood glucose testing, timing of insulin injections, diet, and
exercise) that could be sensitive to aspects of family functioning, illness-related concerns
or demands, and psychological well-being.

Indeed, previous research has found that high levels of family conﬂict and low
levels of family expressiveness were related to poor compliance to treatment regimens
(e. g., Hauser et al., 1990; Wysocki, 1993). Similarly low family support, cohesion,
expressiveness, and organization, have been found to be related to increased incidences of
hypoglycemia and DKA, both of which result from poor adherence (e. g., Dumont et al.,
1995; Liss et al., 1998). Relatedly, research on the adjustment of children has also found
signiﬁcant relationships between the psychological well-being of children with diabetes
and hypoglycemia and diabetes-related hospitalizations (Lerrnark et al., 1996; Liss et al.,
1998). Notably, patients with eating disorders such as bulimia or patients who omit
insulin injections in order to lose weight are not only engaging in behaviors that make it
difﬁcult to adhere to treatment but are also putting themselves at risk for subsequent
health complications (Johnson, 1995; LaGreca, Swales, Klemp, Madigan, & Skyler,
1995). In conclusion, this study may have beneﬁted from measuring behaviors associated
with treatment adherence in addition to using HbAlc values. Support for this
recommendation comes from the results of a study conducted by Peyrot and his

colleagues who found that the relationship between psychosocial factors and HbA1c

91

values was mediated by treatment adherence in adults with diabetes, suggesting that both
manners of measuring physical well-being are informative (Peyrot et al., 1999).

Related to the idea of examining treatment adherence behaviors in future research,
it is also recommended that future research use time series data in which daily or weekly
logs of diabetes care behaviors, blood glucose levels, signiﬁcant events occurring in the
family, etc., are collected. Data such as these would allow for more discriminant analyses
of the relationships among the variables examined in this study. In addition, longitudinal
designs which include the collection of repeated measures of HbA1c values and the other
variables examined in this study would be useful in not only identifying what
psychosocial variables inﬂuence metabolic control over time but also clarify the
directions of these relationships over time.

Findings from Mediation Models

It was proposed that the relationships between illness-related concerns or demands
and parental and child well—being would be mediated by the psychosocial variables of
family cohesion, expressiveness, conﬂict as well as Approach and Avoidance coping
strategies. No support was found for these proposed relationships. Instead, illness-
related concerns or demands appeared to be a mediating variable in certain cases. Results
indicated that illness-related concerns or demands mediated the relationship between
family conﬂict and maternal depression as well as child psychological well-being.
Apparently, the more conﬂicted was the family, the more likely it compounded the strain
that the families were under as a result of the diabetes. These combined effects, in turn,
increased the likelihood of depressive symptomatology in mothers as well as behavioral

and emotional problems in children with diabetes. Illness-related concerns or demands

92

 

also served as a mediator for the relationship between family cohesion and maternal
depression suggesting that, once again, the less helpful or supportive was the family, the
more likely the family was to feel burdened by the diabetes, and subsequently result in
increased levels of maternal depression.

Findings from Exploratopy Analyses

This study attempted to determine the direction of the relationships between
metabolic control and the psychosocial factors of family ﬁrnctioning and illness-related
concems or demands. Given the design of this study, however, the question of direction
could not properly be addressed. However, results indicated that family cohesion,
expressiveness, and conﬂict as well as illness-related concerns or demands did not
account for any signiﬁcant changes in metabolic control. The small sample size, though,
raises the question of the validity of this interpretation.

Finally, this study examined the potential effects of children’s age and illness
duration. Although no signiﬁcant relationships were found for illness duration,
signiﬁcant relationships were found for children’s age. According to both mothers and
fathers, families in which their child with diabetes was older were less likely to
experience illness-related concerns or demands. Older children are typically at an age
where they are independent and responsible for their medical care. These children are
better able to take care of themselves and are less reliant on parents and family members
for help. In addition, they are at an age where they begin to separate themselves from the
family. As a result, as children grow older their families may be less impacted by their

child’s illness.

93

The results also suggested that family conﬂict was related to age. Based on the
reports of fathers, families were more conﬂicted if their child with diabetes was young in
age. Having a young child is difﬁcult in and of itself but having a young child with
diabetes can potentially compound the experience (child being unable to understand why
it is important to eat certain foods or to limit physical activities, unable to identify or
articulate the experience of physical symptoms of diabetes, being scared of needles and
therefore refusing insulin injections, etc.). Again, for young children, parents are
primarily responsible for the care of their children. This experience can be overwhelming
and stressful. As a result, families may experience a great deal of conﬂict as they
continually adjust to their child’s diabetes. It should be noted that the previous ﬁndings
regarding children’s age were based on correlations. Further studies would be needed in
order to support these ﬁndings and conclusions.

Methodological Limitations

There are many methodological limitations in the study that should be considered
when interpreting the results. The current study was cross-sectional in nature and, as a
result, it is difﬁcult to determine directional effects. In order to better address this issue
studies such as epidemiological or longitudinal studies which utilizing different designs
may be better able to address some of the questions raised in this study (e. g., direction of
relationship between family functioning and metabolic control or the effects of illness
duration on adjustment). Another obvious limitation in this study was the relatively small
sample size. This small sample size was particularly applicable in analyses conducted on
fathers and children. This appeared to contribute to fewer signiﬁcant results, therefore, it

is difﬁcult to make assured conclusions.

94

In addition, the results of this study are mostly based on self-report measures.
Although an economical way of collecting data, it did not allow for parents to provide a
more comprehensive description of ways in which their children’s diabetes have affected
them both on a personal and familial level as well as how they choose to manage the
emotional and practical concornitants of their children’s diabetes. Using open-ended
questions or an interview format would be useful in providing such an opportunity.
Similarly, a drawback to this study is that although children were considered in this
study, they themselves did not actively participate. Rather, their parents provided their
perspective on their children’s psychological well-being.

Implications and Future Directions

Despite the methodological limitations, the results of this study have implications
in understanding the family’s adjustment to diabetes. First, this study provided an
opportunity to examine the adjustment of parents of children with diabetes. Parents, and
in particular fathers, of children with diabetes have received little empirical attention. For
mothers, it appeared that their psychological well-being was strongly related to family
functioning and coping strategies. Fathers, on the other hand, appeared to be differently
affected by these psychosocial variables, with only their use of Avoidance-focused
coping strategies having a signiﬁcant negative effect on their psychological well-being.
As indicated, fathers are typically not included in such research but it appears that their
experiences with having a diabetic child may differ from mothers’ experiences and
deserves more attention in research.

Second, this study provided the opportunity to examine the role of family

functioning in the well-being of children. Although support was found for the

95

relationships between dimensions of family functioning and children’s psychological
well-being, no signiﬁcant relationships were found for metabolic control. These
particular results indicate that further research is needed in clarifying the role of family
functioning in metabolic control as well as the identiﬁcation of other possible variables
that could inﬂuence metabolic control.

In addition, this study provided the opportunity to examine the effects illness-
related concerns or demands on family well-being, an area which has received little
empirical attention. Interestingly, the results of univariate correlations and regression
analyses suggest that illness-related concems or demands play a pertinent role in the
adjustment of children with diabetes and their parents. Future research would beneﬁt
from utilizing measures which reﬂect either general illness—related burdens or speciﬁc
illness-related burdens as they may serve as better predictors of familial adjustment than
do the traditionally examined variables of family functioning and coping strategies.

Finally, this study attempted to provide a better understanding of the role of
psychosocial factors in parental and children’s well-being. Although some of the
questions were answered and partial support was found for ﬁndings of previous studies,
many questions need to be answered. An effective research program designed to
understand these dynamics should be developed in order to do so. Further research is
necessary for medical and mental health professionals so that they are better able to
identify those children with diabetes and parents who are at risk and prepared to intervene

appropriately and in a timely manner.

96

APPENDICES

97

  
  
  
  
   
 
  
   
 
 
   

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FAX: SWIM-1171

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APPENDIX A

MSU UCRIHS APPROVAL LETTER

MICHIGAN STATE

UNIVERSITY

 

February 27, 1998

To: Thomas M. Reischl
36 Baker Hall

RE: IRBﬁ: 98-100
TITLE: THE ADAPTATIONAL PROCESS OF CHILREN WITH
INSULIN-DEPENDENT DIABETES MBLLITUS AND THEIR

P
REVISION REQUESTED: N/A
CATEGORY: 2-H,I
APPROVAL DATE: 02/27/98

The University Committee on Research Involving Human Subjects'(UCRIES)
review of this project is complete._ I am pleased to adVise that the
rights and welfare of the human-subjects appear to be adequately
rotected and methods to obtain informed consent are.appropriate.
herefore, the UCRIHS approved this progect and any reVisions listed
above.

RRNBKAL: UCRIHS approval is valid for one calendar year, beginning with
the approval date shown above. Investigators planning to
continue a progect b nd one year must use the green renewal
form (enclosed with t e original a roval letter or when a
project is renewed) to seek update certification. There is a
maximum of four.such expedite renewals ssible. Investigators
wishin to continue a preject beyond tha time need to submit it
again or complete review.

REVISIONS: UCRIHS must review any changes in rocedures involving human
2 . subjects, rior to initiation of t e change. If this is done at

the time o renewal, please use the green renewal form. To
revise an approved protocol at an other time during the year.
send your written request to the_ CRIBS Chair, requesting reVised
approval and referenCing the preject's IRB # and title. Include
in your request a description of the change and any revised
instruments, consent forms or advertisements that are applicable.

PROBLEKS/

CHANGES: Should.either of the followin arise during the course of the
work, investigators must noti y UCRIHS promptly: (1) roblems
(unexpected Side effects, comp aints, etc.) involving uman
subJects_or g2).changes in the research environment or new
information indicating greater risk to the human sub'ects than
eXisted when the protocol was previously reviewed an approved.

If we can be of any future help, lease do not hesitate to contact us
at (517)355-2180 or FAX (517l4 2- 171.

Sincerel

 
    
 

7
Vid 8. Wright, Ph.D.-

CRIHS Chair
DEw:bed

cc: ﬁison Ward

98

APPENDIX B

BRONSON METHODIST HOSPITAL/KCMS IRB APPROVAL LETTER

BMHl 152 - The adaptational process of children with Insulin-dependent
diabetes mellitus (IDDM) and their parents (W ard/Reischl)

At the May 5, 1998 Meeting of the Expedited Review Committee Meeting,
BMHI 152 was approved as submitted.

1. The Expedited Review Committee determined the continuing
review interval for this study to be set at 12 months.

2. Before this protocol can be implemented i.e., prior to a drug
being given or a procedure undertaken, all changes must be made
and a corrected signed copy of the protocol and informed
consent ﬁled with the Blvﬂ-I Human Use Committee Chairman
(or designee). The clinical investigator is required to receive
approval from the BMH Human Use Committee prior to initiating
any changes in approved research during the period for which
BMH Human Use Committee approval has been given.

m M 721.19. ‘/$h4a775
Date

Robert H. Hume, M.D., Chairman
Bronson Methodist Hospital
Human Use Committee

252 East Lovell Su'eet
Kalamazoo, MI 49007

(616) 341-7988

 

 

cc: Ward/Reischl

99

APPENDIX C

CCRS IRB APPROVAL LETTER

Children's '

f((Erlinics ’ A

Rehabilitative Services
January 4, 1999

Alison Ward, MA.
Doctoral Candidate
Department of Psychology
Michigan State University

This letterisawritten conﬁrmation oftheapproval foryomresearchproposal 'l'he
Adaptational Process of Children with Insulin-Dependent Diabetes Mellitus and Their
Parents,” that was reviewed by our institutional review board (IRB), the Medical
Executive Committee (MEC) on December 17, 1998. This approval was granted based
on the supporting documents submitted and the information you presented to the MEC
that includes informed consents, patient conﬁdentiality and no monetary costs to the
subjects or expectation of in kind services or ﬁnancial support ﬁ'om the Children’s
Clinics.

Thank you for your research interests and enhancement of knowledge regarding children

withspecial healthcareneeds. prosSiblewewould Iiketohaveacopyofyour
aggregate results when your research is completed.

Vicky Lewis Ph.D., RN

Director of Research

Children’s Clinics

520-324-3027
Afﬁliated with & Compass Children's Clinic Building
Tucson Medical Center & 26“) North Wyatt Drive 0 Tucson, Arizona 85712
University Medical Center (520) 324-1005 (5437)

PHD-2316261

100

APPENDIX D

SAMPLE LETTER SENT TO PARENTS
Dear Parents:

In cooperation with the Pediatric Diabetes Clinic, Alison Ward, M.A., of the
Department of Psychology at Michigan State University, is conducting a study on the
impact of insulin-dependent diabetes mellitus (IDDM) on children and parents. From this
study, we hope to better understand how parents and children perceive and experience
potentially stressful aspects of IDDM and how this may affect the child’s
glycohemoglobin (hemoglobin Alc) values. In order to understand these aspects, though,
we need your help.

Participation would require you to complete a series of questionnaires designed to
provide us with information regarding yourself, your family, and your child. In addition,
participation in this study would also need for us to review your child’s medical records
to determine his/her previous glycohemoglobin (hemoglobin Alc) values.

In order to be able to participate in this study, your child must be between 4 and
17 years old, living at home with you, and must have been diagnosed with IDDM at least
six months ago. Although we would like as many families as possible to participate in
this study, it is not necessary for both the mother and father to agree to participate; that is,
either the mother, father, or both parents can choose to participate.

If you are interested in participating, or at least would like to learn more about the
study, please complete and mail the enclosed stamped, addressed postcard. You will then
be contacted by Ms. Ward who will describe the study further and ask if you are
interested in participating in the study. If you do agree to participate, questionnaire
packets will then be mailed to you. The questionnaires will take approximately one hour
to ﬁll out and can be completed at your leisure in your home. Your participation in this
study will also allow you the opportunity to be entered into a random drawing for a
$75.00 award.

Any information provided by you in the questionnaires as well as in your child’s
medical record will be kept confidential and your decision to participate in this
project will not affect your child’s treatment at the Clinic in any way. In addition,
you may choose not to participate in the study at any time and you may refuse to answer
any questions.

Thank you for taking the time to consider participating in this study. We hope
that it will be an interesting and beneﬁcial experience to all who participate.

101

APPENDIX E

STUDY DESCRIPTION GIVEN TO PARENTS OVER TELEPHONE

Hi , this is Alison Ward. I’m calling on behalf of the Michigan State

 

University Pediatric Diabetes Clinic. We received your postcard stating that you are
interested in learning more about and possibly participating in our study examining the
impact of diabetes on children and parents.

Just to tell you a little bit about the study....Previous research has shown that how
we perceive and respond to stress can affect our physical health and emotional well-
being. Therefore, this study is designed to examine how you and your family perceives
and experiences the potentially stressful aspects of diabetes as well as how this may affect
your child’s glycohemoglobin levels. If you choose to participate, you will be sent a
packet of questionnaires. There are seven questionnaires in all. The questions cover a
variety of topics including general information about yourself such as age, educational
level, etc. There are questions about aspects of your life that have been affected by your
child’s diabetes, activities that your family does together or how your family solves
problems, how you personally cope with the stressful and challenging aspects of your
child’s diabetes, and questions about the feelings and behaviors of you and your child.
This packet will take approximately one hour to complete. You’ll be provided with a
stamped, self-addressed envelope to mail back the questionnaires when you’re done. In
addition, we would need to review your child’s medical records to determine his/her
previous glycohemoglobin levels.

Of course, I want to stress that your participation in this study is strictly voluntary
so you are able to choose not to participate at any time or to not answer speciﬁc
questions. In addition, any information that you provide will be kept conﬁdential and
none of the information you provide will be included with your child’s medical records.
Finally, if you do participate, you will be entered in a random drawing for $75.00 as a
way of thanking you for your participation in this study. I also wanted to let you know
that once the study is ﬁnished, we’d be happy to share with you a report of the

information that we’ve gathered.

102

Do you have any questions of me? Any concerns?

Does this sound like something that you would be interested in doing? (YES/NO)
(If YES) Great! I’ll be sending out the packet of questionnaires within the next week.

I’ll include my telephone number so that if you have any questions you can contact me.
May I have your address?

I noticed that your wife/husband is also interested in this study. Shall I
speak to her/him (call back?) or do you think that this is something that he/she
would be interested in participating and that I should go ahead and include a packet
of questionnaires for him/her?

Thank you so much !

103

APPENDIX F

COVER LETTER SENT WITH QUESTIONNAIRES TO PARENTS

Dear

We appreciate your willingness to participate in our study examining how parents
and children perceive and experience potentially stressful aspects of IDDM and how this
may affect you and how this may affect your child’s glycohemoglobin (hemoglobin Ale)
values.

Attached you will ﬁnd a consent form and a packet of questionnaires. Please read
and sign the consent form if you agree to participate in this study. Then, please put it in
the enclosed white envelope labeled “Informed Consent.” As discussed with you on the
phone, the questionnaires are designed to provide us with information regarding yourself,
your family, and your child. All instructions are included and are fairly self-explanatory.
However, if you should have any questions on how to complete the forms or about the
study, please do not hesitate to contact me, Alison Ward, M.A., at (XXX) XXX-XXXX.
Leave a message and I will get back to you as soon as possible.

It is very important that M complete these questions on yOur own. If you
would like to discuss your answers with others, please do so only after you have
completed them.

We have also provided you with a self-addressed, stamped envelope for returning

the consent form and questionnaires to us. We appreciate your investment of time and
effort and hope that this will be an interesting and beneﬁcial experience to you.

104

APPENDIX G

CONSENT FORM FOR PARENTS FROM MSU

Informed Consent

Purpose

The purpose of this study is to understand how parents and childem perceive and
experience potentially stressful aspects of insulin-dependent diabetes mellitus and how
this may affect the child’s glycohemoglobin (hemoglobin Alc) levels. In order to
participate in this study you will be required to ﬁll out a series of questionnaires which
will take approximately one hour to complete. In addition to the questionnaires,
information regarding your child’s glycohemoglobin (hemoglobin Alc) levels will be
obtained from the Clinical Center’s medical records.

Confidentialig

All information obtained from this consent form, the questionnaires, and your
child’s medical records will be treated with strict conﬁdentiality. Your answers will not
be made a part of your child’s medical records nor shared with any medical staff. In
addition, any information that you provide or that is taken from your child’s medical
report will remain anonymous in any report of the research ﬁndings; any information that
is reported is not based on individual responses but rather a summary of responses of all
participants. A copy of the ﬁndings will be sent to participants who request such
material.

Volu’nftarv Participation

By signing this consent form, you are stating that you understand all that has been
explained to you and that your participation in this study is volunatry. At anytime during
this study, you have the right to discontinue your participation without being penalized.

Your decision to participate in this study will not affect in anyway the quality or
type of medical attention that your child receives at the Clinical Center.

Mdom DravLipg

Upon the return of this consent form, your name will be entered into a random
drawing for a $75.00 award. If you choose not to answer any or all parts of the
questionnaires of this study, you are still eligible to participate in this random drawing.

If you should have any questions regarding this study, you may telephone Alison
Ward, MA. at (XXX) XXX-XXXX or Thomas Reischl, Ph.D. at (XXX) XXX-XXXX.
If you have any questions regarding your rights as a research participant, please contact
David E. Wright, Ph.D. at (517) 355-2180 or at UCRIHS - Michigan State University,
225 Administration Building, East Lansing, MI 48824.

Thank you very much for your participation!

105

Mother (if applicable):

 

(please print your name here)

 

(please sign your name here)

 

date

 

(please print child’s name here)

Father (if applicable):

 

(please print your name here)

 

(please sign your name here)

 

date

106

APPENDIX H

CONSENT FORM FOR PARENTS FROM KCMS
Family Acknowledgement

“I have been given an opportunity to ask questions regarding this research study, and
these questions have been answer to my satisfaction. I understand that if I have any
additional questions, I can contact Alison Ward, MA. at (XXX) XXX-XXXX or Thomas
Reischl, Ph.D. at (XXX) XXX-XXXX.”

“In giving my consent, I understand that I/my child’s participation in this research project
is voluntary, and that I may withdraw myself/him/her at any time without affecting
my/my child’s future medical care. I also understand that the investigator in charge of
this study, with my/my child’s welfare as a basis, may decide at any time that I/he/she
should no loger participate in this study.”

 

“I hereby authorize Alison Ward, MA. and Thomas Reischl, Ph.D. to release the
information obtained in this study to the medical science literature. I understand that
I/my child will not be identiﬁed by name. Additionally, I understand that the Food and
Drug Administration (FDA) may inspect Bronson Methodist Hospital’s research ﬁles and
may wish to interview me regarding my/my child’s participation in this study.”

“In the event of physical injury or illness resulting from the research procedures, Bronson
Methodist Hospital and/or Alison Ward, MA. and Thomas Reischl, Ph.D. will provide or
arrange to provide for all necessary medical care to help me/my child recover, but they do
not commit themselves to pay for such care, or to provide any additional compensation. I
also understand that neither Bronson Method Hospital nor Alison Ward, MA. and
Thomas Reischl, Ph.D., agree to bear the expense or medical care for any new illness or
complications which may develop during my/my child’s participation in this study, but
are not a result of the research procedures. If I have further questions or concerns
regarding my/my child’s participation in this study, I may direct them to Alison Ward,
MA. at (XXX) XXX-XXXX or Thomas Reischl, Ph.D. at (XXX) XXX-XXXX. If I
have questions about research subjects’ rights, I may direct them to Robert H. Hume,
M.D., Chairman, Bronson Methodist Hospital Institutional Review Board at (616) 341 -
7988.”

“I acknowledge that I have' read and understand the above information, and that I agree to
allow myself/my child to participate in this study. I have received a copy of this
document for my own records.”

 

 

Signature of Patient Date

107

If minor is older than ﬁve (5) years of age, was assent obtained? Yes No

 

 

Signature of Legal Guardian/Parent Date

 

 

Signature of Legal Guardian/Parent Date

If both parents/ guardians do not provide informed consent for their child to participate in
this study, please explain why:

 

 

“I have witnessed that the information in this Patient Consent Form was adequately
explain to the patient.”

 

 

Signature of Witness Date

 

108

Informed Consent

Pur_'pose

The purpose of this study is to understand how parents and childem perceive and
experience potentially stressﬁrl aspects of insulin—dependent diabetes mellitus and how
this may affect the child’s glycohemoglobin (hemoglobin Alc) levels. In order to
participate in this study you will be required to ﬁll out a series of questionnaires which
will take approximately one hour to complete. In addition to the questionnaires,
information regarding only your child’s glycohemoglobin (hemoglobin Alc) levels will
be obtained from the Kalamazoo Clinic’s medical records.

Confidentiality

All information obtained from this consent form, the questionnaires, and your
child’s medical records will be treated with strict conﬁdentiality. Your answers will not
be made a part of your child’s medical records nor shared with any medical staff. In
addition, any information that you provide or that is taken from your child’s medical
records will remain anonymous in any report of the research ﬁndings; any information
that is reported is not based on individual responses but rather a summary of responses of
all participants. A copy of the ﬁndings will be sent to participants who request such
material.

Voluntary Participatig

By signing this consent form, you are stating that you understand all that has been
explained to you and that your participation in this study is volunatry. At anytime during
this study, you have the right to discontinue your participation without being penalized.

Your decision to participate in this study will not affect in anyway the quality
or type of medical attention that your child receives at the Clinical Center.

Risks and Beneﬁts

By signing this consent form, you are stating that you understand that this study
should expose you and your child to minimal risk; that you are being asked to respond to
questions examining your perceptions, experiences, and the emotional well-being of both
you and your child. Additionally, the physical well-being of your child, as measured by
glycohemoglobin (hemoglobin Alc) levels, will be collected from already existing data
in your child’s medical records.

The results of this study will further elucidate the unique factors which inﬂuence
how parents and children with IDDM adapt to the potentially stressful aspects of this
condition. This understand will allow medical and mental health professionals to better
serve you and your child.

Random Drawing

Upon the return of this consent form, your name will be entered into a random
drawing for a $75.00 award. While you are free not to participate in this study, you will
only be eligible to participate in this random drawing if you complete the questionnaires.
The award recipient will be contacted by to be notiﬁed of his/her status.

109

If you should have any questions regarding this study, you may telephone Alison
Ward, MA. at (XXX) XXX-XXXX or Thomas Reischl, Ph.D. at (XXX) XXX-XXXX or
write to either of us at the Department of Psychology, Psychology Research Building,
Michigan State University, East Lansing, MI 48823 . If you have any questions
regarding your rights as a research participant, please contact Robert H. Hume, M.D.,
Chairman, Bronson Methodist Hospital Institutional Review Board at (616) 341-7988.”

Thank you very much for your participation!

 

 

(please print your name here) (please print child’s name here)

 

(please sign your name here)

 

date

110

APPENDIX I

CONSENT FORM FOR PARENTS FROM CCRS

Informed Consent

Purpose

The purpose of this study is to understand how parents and children perceive and
experience potentially stressful aspects of insulin-dependent diabetes mellitus and how
this may affect the child’s glycohemoglobin (hemoglobin Al c) levels. In order to
participate in this study you will be required to ﬁll out a series of questionnaires which
will take approximately one hour to complete. In addition to the questionnaires,
information regarding your child’s glycohemoglobin (hemoglobin Alc) levels will be
obtained from the medical records at Dr. Wheeler’s ofﬁce.

Conﬁdentiality

All information obtained from this consent form, the questionnaires, and your
child’s medical records will be treated with strict conﬁdentiality. Your answers will not
be made a part of your child’s medical records nor shared with any medical staff. In
addition, any information that you provide or that is taken from your child’s medical
report will remain anonymous in any report of the research ﬁndings; any information that
is reported is not based on individual responses but rather a summary of responses of all
participants. A copy of the ﬁndings will be sent to participants who request such
material.

Voluntary Participatiogn

By signing this consent form, you are stating that you understand all that has been
explained to you and that your participation in this study is voluntary. At anytime during
this study, you have the right to discontinue your participation without being penalized.

Your decision to participate in this study will not affect in anyway the quality or
type of medical attention that your child receives at the Children’s Center for
Rehabilitative Services.

Random Drawing

Upon the return of this consent form, your name will be entered into a random
drawing for a $75.00 award. If you choose not to answer any or all parts of the
questionnaires of this study, you are still eligible to participate in this random drawing.

If you should have any questions regarding this study, you may telephone Alison
Ward, MA. at (XXX) XXX-XXXX or Thomas Reischl, Ph.D. at (XXX) XXX-XXXX.
If you have any questions regarding your rights as a research participant, please contact
Vicky Lewis, Ph.D., R.N. Director of Research at Children’s Clinics at (520) 324-3027.

Thank you very much for your participation!

111

 

Mother (if applicable):

 

(please print your name here)

 

(please sign your name here)

 

date

 

(please print child’s name here)

Father (if applicable):

 

(please print your name here)

 

(please sign your name here)

 

date

112

 

APPENDIX J

DEMOGRAPHIC QUESTIONNAIRE
Please answer the following questions:

1. Your Age:

 

 

Sex:
1. Male
2. Female
3. Relationship to the child:
1. Mother
2. Father
3. Step—mother
4. Step-father
5. Other (specify)
4. What is your race or ethnic background:
1. Caucasian/White
2. Aﬁican American/Black
3. Hispanic/Latino or Latina
4. Asian American
5. Native American
6. Other (specify)
5. What is your current education level:
less than high school
some high school
high school grad/GED

some college or 2 year degree
bachelor’s degree
post-bachelor’s degree
at is your gross (before taxes) annual family income:

ox
PWPF§9MPWNﬂ

less than $10,000 6. $50,001 to $60,000
$10,000 to $20,000 7. $60,001 to $70,000
$20,001 to $30,000 8. $70,001 to $80,000
$30,001 to $40,000 9. $80,001 to $90,000
5. $40,001 to $50,000 10. above $90,000
7. How long ago was your child diagnosed with diabetes:

 

 

8. What is your child’s age:

9. What is the sex of your child:
1. Male
2. Female

113

 

APPENDIX K

FAMILY ENVIRONIVIENT SCALE

Below are 90 statements. They are statements about families. You are to decide which
of these statements are true of your family and which are false. If you think the statement
is True or mostly True of your family, circle the T for True. If you think the statement is
False or mostly False of your family, circle the F for False.

You may feel that some of the statements are true for some family members and false for
others. Mark True if the statement is true for most family members. Mark False if the
statement is false for most members. If the members are evenly divided, decide what is
the stronger overall impression and answer accordingly.

Remember, we would like to know what your family seems like to you. So do not try to
ﬁgure out how other members see your family, but do give us your general impression of
your family for each statement.

 

Family members really help and support one another.
Family members often keep their feelings to themselves.
We ﬁght a lot in our family. ‘

We don’t do things on our own very often in our family.
We feel it is important to be the best at whatever you do.
We often talk about political and social problems.

We spend most weekends and evenings at home.

008.099.9953?“
v-r-rv-rr-ar-rr-rr-rr-r
'11'11'11'11'11'11'51'11

. Family members attend church, synagogue, or Sunday School fairly
often.

9. Activities in our family are pretty carefully planned.

10. Family members are rarely ordered around.

11. We often seem to be killing time at home.

12. We say anything we want to around home.

13. Family members rarely become openly angry.

14. In our family, we are strongly encouraged to be independent.
15. Getting ahead in life is very important in our family.

16. We rarely go to lectures, plays or concerts.

Ht-li-lt-it-lt-lt-ii-lt-l
’11'1'5'11'11'11'11'11'11'1'1

17. Friends often come over for dinner or to visit.

114

18. We don’t say prayers in our family.

19. We are generally very neat and orderly.

20. There are very few. rules to follow in our family.

21. We put a lot of energy into what we do at home.

22. It’s hard to “blow off steam” at home without upsetting somebody.
23. Family members sometimes get so angry they throw things.

24. We think things out for ourselves in our family.

25. How much money a person makes is not very important to us.

t-ll-lt-i-lt-lt-lt-lt-l’ﬁ
'11’11’11'1'1'11’1'1'1'1’11’11

26. Learning about new and different things is very important in our

family.
27. Nobody in our family is active in sports, Little League, bowling, etc. T F
28. We often talk about the religious meaning of Christmas, Passover, or T F

other holidays.

 

29. It’s often hard to ﬁnd things when you need them in our household.
30. There is one family member who makes most of the decisions.
31. There is a feeling of togetherness in our family.

32. We tell each other about our personal problems.

33. Family members hardly ever lose their tempers.

34. We come and go as we want to in our family.

35. We believe in competition and “may the best man win.”

36. We are not that interested in cultural activities.

37. We often go to movies, sports events, camping, etc.

38. We don’t believe in heaven or hell.

39. Being on time is very important in our family.

40. There are set ways of doing things at home.

41. We rarely volunteer when something has to be done at home.

r—lr—i-a-iv-i-av-lv-lr-iv-lv-lv-aH-i
muwwmmmmmmmmmm

42. If we feel like doing something on the spur of the moment we often
just pick up and go.

43. Family members often criticize each other.
44. There is very little privacy in our family.

45. We always strive to do things just a little better the next time.

h-l'-l'-l'-l
"41115131

46. We rarely have intellectual discussions.

115

47. Everyone in our family has a hobby or two.

48. Family members have strict ideas about what is right and wrong.
49. People change their minds often in our family.

50. There is strong emphasis on following rules in our family.

51. Family members really back each other up.

52. Someone usually gets upset if you complain in our family.

5 3. Family members sometimes hit each other.

54. Family members ahnost always rely on themselves when a problem
comes up.

55. F arnily members rarely worry about job promotions, school grades,
etc.

56. Someone in our family plays a musical instrument.

57. Family members are not very involved in recreational activities
outside work or school.

58. We believe there are some things you just have to take on faith.
59. Family members make sure their rooms are neat.

60. Everyone has an equal say in family decisions.

61. There is little group spirit in our family.

62. Money and paying bills is openly talked about in our family.

63. If there’s a disagreement in our family, we try hard to smooth things
over and keep the peace.

64. Family members strongly encourage each other to stand up for their
rights.

65. In our family, we don’t try that hard to succeed.
66. Family members often go to the library.

67. Family members sometimes attend courses or take lessons for some
hobby or interest (outside of school).

68. In our family each person has different ideas about what is right and
wrong.

69. Each person’s duties are clearly deﬁned in our family.
70. We can do whatever we want to in our family.
71. We really get along well with each other.

72. We are usually careful about what we say to each other.

116

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t-l

l-lt-i

r-rr-rr-rv-rHr-rr-a

l-l

t-l

Fir-ll-lt-l

'11'1'1'11'11'11'11'11'11

a:

"11'1'!

’11'11’11’11’11’11

’11’11'11'1'1

 

73. Family members often try to one-up or out-do each other.

74. It’s hard to be by yourself without hurting someone’s feelings in our
household.

75. “Work before play” is the rule in our family.

76. Watching T.V. is more important than reading in our family.
77. Family members go out a lot.

78. The Bible is a very important book in our house.

79. Money is not handled very carefully in our family.

80. Rules are pretty inﬂexible in our household.

81. There is plenty of time and attention for everyone in our family.
82. There are a lot of spontaneous discussions in our family.

83. In our family, we believe you don’t ever get anywhere by raising your
voice.

84. We are not really encouraged to speak up for ourselves in our family.

85. Family members are often compared with others as to how well they
are doing at work or school.

86. Family members really like music, art and literature.

87. Our main form of entertainment is watching T.V. or listening to the
radio.

88. Family members believe that if you sin you will be punished.
89. Dishes are usually done immediately after eating.

90. You can’t get away with much in our family

117

i-ll-l

HHHHHHH-l-i

l-li-l

r-l

'11'11'11'1'1'1'1'11'1'1'1'1'11’11

v11

 

APPENDIX L

COPE - MODIFIED

Having a child with insulin-dependent diabetes mellitus can be a challenging and
stressful experience. We are interested in learning how you usually cope with you child’s
illness. There may be different ways in which you respond to these stressful experiences
as well as to your feelings associated with these experiences, however, think about what
you usually do to deal with them.

Then respond to each of the following items. Please try to respond to each item
separately in your mind from each other item. Choose your answers thoughtfully and
make your answers as true FOR YOU as you can. Please answer every item. There are
no “right” or “wrong” answers, so choose the most accurate answer for you -- not what
you think “most peOple” would say or do. Indicate what YOU usually do to cope with
your child’s illness.

 

I usually I usually I usually I usually

don’t do do it a do it do it a lot
it all little bit sometimes
1. I turn to work or other substitute 1 2 3 4
activities to take my mind off of things.
2. I get upset and let my emotions I 2 3 4
out.
3. I try to get advice from someone I 2 3 4
about what to do.
4. I concentrate my efforts on doing 1 2 3 4
something about it.
5. I say to myself, “this isn’t real.” 1 2 3 4
6. I admit to myself that I can’t deal 1 2 3 4
with it, and quit trying.
7. I discuss my feelings with 1 2 3 4
someone.
8. I talk with someone to ﬁnd out 1 2 3 4
more about the situation.
9. I daydream about things other than 1 2 3 4
this.
10. I make a plan of action. 1 2 3 4

118

 

I usually I usually I usually I usually

don’t do do it a do it do it a lot
it all little bit sometimes
11. I try to get emotional support from 1 2 3 4
friends and relatives.
12. I just give up trying to reach my 1 2 3 4
goal.
13. I take additional action to try to get 1 2 3 4
rid of the problem.
14. I refuse to believe that it has 1 2 3 4
happened.
15. I let my feelings out. 1 2 3 4
16. I talk to someone who could do 1 2 3 4
something concrete about the problem.
17. I sleep more than usual. 1 2 3 4
18. I try to come up with a strategy 1 2 3 4
about what to do.
19. I get sympathy and understanding 1 2 3 4
from someone.
20. I give up the attempt to get what I 1 2 3 4
want.
21. I think about how I might best 1 2 3 4
handle the problem.
22. I pretend that it hasn’t really 1 2 3 4
happened.
23. I go to movies or watch TV, to 1 2 3 4
think about it less.
24. I ask people who have had similar 1 2 3 4
experiences what they did.
25. I take direct action to get around 1 2 3 4
the problem.
26. I reduce the amount of effort I’m 1 2 3 4
putting into solving the problem.
27. I talk to someone about how I feel. 1 2 3 4
28. I think hard about what steps to 1 2 3 4

take.

119

 

I usually I usually I usually I usually

don’t do do it a do it do it a lot
it all little bit sometimes
29. I act as though it hasn’t even 1 2 3 4
happened.
30. I do what has to be done, one step 1 2 3 4
at a time.

120

 

APPENDIX M

IMPACT ON THE FAMILY SCALE
Below are some statements that people have made about living with an ill child. Please
read each statement and circle the response which indicates whether at the present time

you would strongly agree, agree, disagree, or strongly disagree with the statement.

Strongly Agree Disagree Strongly

Agree Disagree
1. The illness is causing ﬁnancial l 2 3 4
problems for the family.
2. Time is lost from work because of 1 2 3 4
hospital appointments.
3. I am cutting down the hours I work 1 2 3 4
to care for my child.
4. Additional income is needed in 1 2 3 4
order to cover medical expenses.
5. Because of the illness, we are not 1 2 3 4
able to travel out of the city.
6. People in the neighborhood treat us 1 2 3 4
specially because of my child’s illness.
7. We have little desire to go out 1 2 3 4
because of my child’s illness.
8. It is hard to ﬁnd a reliable person to l 2 3 4
take care of my child.
9. Sometimes we have to change plans 1 2 3 4
about going out because of my child’s
illness.
10. We see family and friends less 1 2 3 4
because of the illness.
11. Because of what we have shared 1 2 3 4
we are a closer family.
12. Sometimes I wonder whether my 1 2 3 4

child should be treated “specially” or
the same as a normal child.

121

 

13. My relatives have been
understanding and helpful with my
child.

14. I think about not having more
children because of the illness.

15. My partner and I discuss my
child’s problem together.

16. We try to treat my child as if
he/ she were a normal child.

17. I don’t have much time left over
for other family members after caring
for my child.

18. Our family gives up things because
of my child’s illness.

19. Fatigue is a problem for me
because of my child’s illness.

20. I live from day to day and don’t
plan for the future.

21. Nobody understands the burden I
carry.

22. Traveling to the hospital is a strain
on me.

23. Learning to manage my child’s
illness has made me feel better about
myself.

24. Sometimes I feel like we live on a
roller coaster; in crisis when my child is
acutely ill, OK when things are stable.

Strongly
Agree

122

1

Agree

Disagree

Strongly
Disagree

4

APPENDIX N

CENTER FOR EPIDEMIOLOGIC STUDIES — DEPRESSION SCALE

Circle the number for each statement which best describes how often you

felt or behaved this way — DURING THE PAST WEEK.

Rarely or

None of the
Time

(Less than
1 Day)

DURING THE PAST WEEK:
1, I was bothered by things
that 0

10.
11.
12.

usually don’t bother me.

I did not feel like eating;
my 0
appetite was poor.

I felt that I could not

shake

off the blues even with 0
help

from my family and

ﬁ'iends.

I felt I was just as good
as other people. 0

I had trouble keeping my
mind on what I was 0
doing.

I felt depressed. 0

I felt that everything I did
was an effort. 0

I felt hopeful about the
future. 0

I thought my life had
been a 0
failure.

Ikhﬁmﬁl
My sleep was restless.

I Was happy.

123

Some or a
Little of
the Time

(1-2 Days)

Occasionally
or a
Moderate
Amount
of Time
(3-4 Days)

Most or
All of
the Time

(5-7 Days)

l3.
14.
15.
16.
17.
18.

19.

20.

I talked less than usual.
I felt lonely.

People were unfriendly.
I enjoyed life.

I had crying spells.

I felt sad.

I felt that people disliked
me.

I could not get “going”.

Rarely or

None of the

Time

(Less than

1 Day)

OOOQOQ

124

Some or a
Little of
the Time

(1-2 Days)

Hp—tpdj—tp—ap—a

Occasionally
or a
Moderate
Amount
of Time
(3-4 Days)
2

NNNNN

Most or
All of
the Time

(5-7 Days)

WMWWWW

 

APPENDIX O

STATE TRAIT ANXIETY INVENTORY — TRAIT ANXIETY

A number of statements which people have used to describe themselves are given below.
Read each statement and then circle the answer to the right of the statement to indicate
how you generally feel. There are no right or wrong answers. Do not spend too much
time on any one statement but give the answer which seems to describe how you
generally feel.

Almost Sometimes Often Almost

Never Always
l. I feel pleasant. I 2 3 4
2. I feel nervous and restless. 1 2 3 4
3. I feel satisﬁed with myself. 1 2 3 4
4. I wish I could be as happy as others seem l 2 3 4
to be.
5. I feel like a failure. 1 2 3 4
6. I feel rested. 1 2 3 4
7. I am “calm, cool, and collected”. 1 2 3 4
8. I feel that difﬁculties are piling up so that 1 2 3 4
I cannot overcome them.
9. I worry too much over something that 1 2 3 4
really doesn’t matter.
10. I am happy. 1 2 3 4
11. I have disturbing thoughts. 1 2 3 4
12. Ilack self-confidence. 1 2 3 4
13. I feel secure. 1 2 3 4
14. I make decisions easily. 1 2 3 4
15. I feel inadequate. 1 2 3 4
16. I am content. 1 2 3 4
17. Some unimportant thought runs through 1 2 3 4
my mind and bothers me.
18. I take disappointments so keenly that I 1 2 3 4

can’t put them out of my mind.

125

Almost Sometimes Often Almost

Never Always
19. I am a steady person. 1 2 3 4
20. I get in a state of tension or turmoil as I 1 2 3 4

think over my recent concerns and interests.

 

126

APPENDIX P

CHILD BEHAVIOR CHECKLIST

Below is a list of items that describe children and youth. For each item that describes
your child now or within the past six months, please circle the 2 if the item is very true
or often true of your child. Circle the 1 if the item is somewhat or sometimes true of
your child. If the item is not true of your child, circle the 0. Please answer all items as
well as you can, even if some do not seem to apply to your child.

 

Not True Somewhat or Very True

(as far as Sometimes or Often

you know) True True
1. Acts too young for his/her age 0 1 2
2. Allergy (describe): 0 1 2
3 Argues a lot 0 1 2
4 Asthma 0 1 2
5. Behaves like the opposite sex 0 1 2
6 Bowel movements outside toilet 0 1 2
7 Bragging, boasting 0 1 2
8. Can’t concentrate, can’t pay 0 1 2
attention for long
9. Can’t get his/her mind off certain 0 1 2
thoughts; obsessions (describe):
10. Can’t sit still, restless, or 0 l 2
hyperactive
11. - Clings to adults or too dependent 0 1 2
12. Complains of loneliness 0 1 2
l3. Confused or seems to be in a fog 0 1 2
l4. Cries a lot 0 1 2
15. Cruel to animals 0 1 2
16. Cruelty, bullying, or meanness to 0 1 2
others
17. Day-dreams or gets lost in his/her 0 1 2
thoughts

127

Not True Somewhat or Very True

 

(as far as Sometimes or Often
you know) True True
18. Deliberately harms self or attempts 0 1 2
suicide
19. Demands a lot of attention 0 1 2
20. Destroys his/her own things. 0 1 2
21. Destroys things belonging to his/her 0 1 2
family
22. Disobedient at home 0 1 2
23. Disobedient at school 0 1 2
24. Doesn’t eat well 0 1 2
25. Doesn’t get along with other kids 0 1 2
26. Doesn’t seem guilty after 0 1 2
misbehaving
27 . Easily jealous 0 1 2

28. Eats or drinks things that are not 0 1 2
food - don’t include sweets (describe): '

29. Fears certain animals, situations, or 0 1 2
places other than school (describe):

30. Fears going to school 0 1 2
31. Fears he/she might think or do 0 1 2
something bad

32. Feels he/she has to be perfect 0 1 2
33. Feels or complains that no one 0 1 2
loves him/her

34. Feels others are out to get him/her 0 1 2
35. Feels worthless or inferior 0 1 2
36. Gets hurt a lot, accident-prone 0 1 2
37. Gets in many ﬁghts 0 1 2
38. Gets teased a lot 0 l 2
39. Hangs around with others who get 0 1 2

in trouble

128

Almost Sometimes Often

 

Never
40. Hears sounds or voices that aren’t 0 1 2
there (describe):
41. Impulsive or acts without thinking 0 1 2
42. Would rather be alone than with 0 1 2
others
43. Lying or cheating 0 1 2
44. Bites ﬁngernails 0 1 2
45. Nervous, highstrung, or tense 0 1 2
46. Nervous movements or twitching 0 1 2
(describe):
47. Nightmares 0 1 2
48. ' Not liked by other kids 0 1 2
49. Constipated, doesn’t move bowels 0 1 2
50. Too fearful or anxious 0 1 2
51. Feels dizzy 0 1 2
52. Feels too guilty 0 1 2
53. Overeating 0 1 2
54. Overtired 0 1 2
55. Overweight 0 1 2
56. Physical problems without known
medical cause:
a. Aches or pains (not headaches) 0 1 2
b. Headaches 0 1 2
c. Nausea, feels sick 0 1 2
(1. Problems with eyes (describe): 0 1 2
e. Rashes or other skin problems 0 1 2
f. Stomachaches or cramps 0 1 2
g. Vomiting, throwing up 0 1 2
h. Other (describe): 0 1 2
57. Physically attacks people 0 1 2
58. Picks nose, skin, or other parts of 0 1 2

body (describe):

129

 

Almost

Never
59. Plays with own sex parts in public 0
60. Plays with own sex parts too much 0
61. Poor school work 0
62. Poorly coordinated or clumsy 0
63. Prefers being with older kids 0
64. Prefers being with younger kids 0
65. Refuses to talk 0
66. Repeats certain acts over and over; 0
compulsions (describe):
67. Runs away from home 0
68. Screams a lot 0
69. Secretive, keeps things to self 0
70. Seen things that aren’t there 0
(describe):
71. Self-conscious or easily 0
embarrassed
72. Sets ﬁres 0
73. Sexual problems (describe):
74. Showing off or clowning around 0
75. Shy or timid 0
76. Sleeps less than most kids 0
77. Sleeps more than most kids during 0
day and/or night (describe):
78. Smears or plays with bowel 0
movements
79. Speech problems (describe): 0
80. Stares blankly 0
81. Steals at home 0
82. Steals outside the home 0

130

Sometimes

I
1

Hp—t

Often

NNNN NNNNNNNN

N

NNNN

 

 

Not True Somewhat or Very True

 

(as far as Sometimes or Often
you know) True True

83. Stores up things he/she doesn’t need 0 1 2
(describe):

84. Strange behavior (describe): 0 1 2
85. Strange ideas (describe): 0 1 2
86. Stubborn, sullen, or irritable 0 1 2
87. Sudden changes in mood or feelings 0 1 2
88. Sulks a lot 0 1 2
89. Suspicious 0 1 2
90. Swearing or obscene language 0 1 2
91. Talks about killing self 0 1 2
92. Talks or walks in sleep (describe): 0 1 2
93. Talks too much 0 1 2
94. T eases a lot 0 1 2
95. Temper tantrums or hot temper 0 1 2
96. Thinks about sex too much 0 1 2
97. Threatens people 0 1 2
98. Thumb-sucking 0 1 2
99. Too concerned with neatness or 0 1 2
cleanliness

100. Trouble sleeping (describe): 0 1 2
101. Truancy, skips school 0 1 2
102. Underactive, slow moving, or lacks 0 1 2
energy

103. Unhappy, sad, or depressed 0 1 2
104. Unusually loud 0 1 2
105. Uses alcohol or drugs for 0 1 2

nonmedical purposes (describe):

131

 

Not True Somewhat or Very True

 

(as far as Sometimes or Often
you know) True True
106. Vandalism 0 1 2
107. Wets self during the day 0 1 2
108. Wets the bed 0 1 2
109. Whining 0 1 2
110. Wishes to be the opposite sex 0 1 2
111. Withdrawn, doesn’t get involved 0 1 2
with others
112. Wonies 0 1 2
113. Please write in any problems your
child has that were not listed above:
a. 0 1 2
b. 0 1 2
c 0 1 2

132

 

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133

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