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THESlS
7

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This is to certify that the

dissertation entitled

THE NEEDS OF MIDDLE CLASS FATHERS PARENTING
CHILDREN WITH CHRONIC CONDITIONS IN
TWO PARENT FAMILIES

presented by

Judith Kay Hovey

has been accepted towards fulﬁllment
of the requirements for

Ph.D. degreein Family and Child Ecology

 

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THE NEEDS OF MIDDLE CLASS FATHERS PARENTING CHILDREN WITH
CHRONIC CONDITIONS IN TWO PARENT FAMILIES

By

Judith Kay Hovey

A DISSERTATION
Submitted to
Michigan State University
in partial fulﬁllment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY
Department of Family and Child Ecology

2000

ABSTRACT

THE NEEDS OF MIDDLE CLASS FATHERS PARENTING CHILDREN WITH
CHRONIC CONDITIONS IN TWO PARENT FAMILIES

By

Judith Kay Hovey

Children with chronic conditions survive for longer periods of time than has been
historically true, creating a need to promote optimal growth and development for them,
their family members and the family as a unit. A review of the literature suggests that
fathers of children with chronic conditions have parenting needs that may be different
ﬁ‘om fathers of well children. Little attention has been directed toward these differences
and no comparative studies were found focusing on families of children with chronic
conditions.

The purpose of this study was to identify and compare the concerns, beliefs,
feelings, coping strategies, and perceptions of family care needs and spouse concerns of
fathers of children with chronic conditions and fathers of well children. The sample
consisted of 99 fathers of children in the service area of a large metropolitan medical
center. The 48 fathers of children with chronic conditions and the 51 fathers of well
children who participated each completed the Hymovich Family Perception Inventory
(FPI) anonymously. The Hymovich instrument contains nine scales, eight that can be
used independently or together as applicable

The results revealed signiﬁcant differences in the parenting concerns of fathers of

children with chronic conditions and fathers of well children. These concerns center

Judith Kay Hovey
around their children’s health and include the need for knowledge. Fathers of children
with chronic conditions also reported signiﬁcant differences in the parenting concerns of
their wives but with strong correlations to their own concerns. There are indications that
there is a place for professional anticipatory guidance, dissemination of information, and
encouragement in the use of fathers’ informal support systems to provide the kinds of

support needed by fathers of children with chronic conditions.

Copyright by
JUDITH KAY HOVEY
2000

DEDICATION
To my parents, Alvin and Lucille Hovey,
who taught me the

value and joy of knowledge

ACKNOWLEDGMENTS

To June Pierce Youatt, Ph.D., my dissertation committee chair, for her assistance
and faith in my ability throughout the academic process. Thank you for your patience,
encouragement and understanding.

To my dissertation committee members, Robert Boger, PhD, Thomas L. Conner,
Ph.D., and Majorie Kostelnik, Ph.D. for their assistance throughout the dissertation
process. Thank you for your support and encouragement.

To Debra Hymovich, Ph.D., my thanks for the use of her instrument, The
Hymovich Family Perception Inventory, that shaped the ﬁnal outcome of this study.
Thank you also for your support and encouragement through our long distance
communications.

To my sister, Ilene Hovey, who continually motivated me to keep going and never

give up. Thank you for all you’ve done.

TABLE OF CONTENTS

13$ng

List of Tables ...................................................... ix
List of Figures .................................................... xi
Chapter 1: Introduction ............................................... 1
Children with Cancer ..................................... 4

Children with Cystic Fibrosis ............................... 4

Children with Juvenile Rheumatoid Arthritis ................. . 4

Parenting Children with Chronic Conditions ................... 5

Fathering Children with Chronic Conditions ................... 6

Fathering Well Children .................................. 7

Statement of Problem ........................................ 8
Conceptual and Operational Deﬁnitions .......................... 8
Research Objectives .......................................... 10

Research Questions and Hypotheses ............................ 11
Assumptions ............................................... 14
Theoretical Base ............................................ 15
Conceptual Model ........................................... 15
Development and Adaptation .............................. 15
Person-Context-Process—Time Model ........................ 16

Combined Models ...................................... l9

Signiﬁcance of Problem ....................................... 21

Chapter 2: Review of Literature ........................................ 23
Inﬂuences of Socioeconomic Status on Parenting .............. 24

Social Networks for Parents ............................... 25

Fathering .............................................. 25

Age of Child ........................................... 27

Sex of Child ........................................... 28

Families of Children with Chronic Conditions ................. 29

Parents of Children with Juvenile Rheumatoid Arthritis ......... 29

Mothers of Children with Chronic Conditions ................. 30

Siblings of Children with Cancer ........................... 30

Fathering Children with Chronic Conditions .................. 31

Fathering Children with Cystic Fibrosis ...................... 32

Fathering Children with Cancer ........................... 33

Coping of Families of Children with Chronic Conditions ........ 34

vii

TABLE OF CONTENTS (continued)

Page
Chapter 3: Method. ................................................. 36
Sampling Procedures ..................................... 37
Instrumentation ......................................... 41
Conceptual and Operational Deﬁnitions ...................... 45
Data Collection Procedures ................................ 50
Data Analysis ......................................... 51
Limitations of Research .................................. 52
Chapter 4: Results ................................................... 53
Research Question 1 ..................................... 53
Research Question 2 ..................................... 57
Research Question 3 ..................................... 60
Research Question 4 ..................................... 62
Research Question 5 ..................................... 63
Research Question 6 ..................................... 66
Chapter 5: Discussion ................................................ 74
Findings of Demographic Data ............................. 74
Findings of the Research Instrument ......................... 75
Purpose of Study ........................................ 77
Findings of Study Data ................................... 77
Conceptual Framework ................................... 84
Review of Literature ..................................... 85
Implications for Clinical Practice ........................... 87
Limitations ............................................. 88
Implications for Future Study .............................. 88
Conclusions ............................................ 88
Appendices: ....................................................... 90
A. Sample Items from FPI ...................................... 91
B. Means, Standard Deviations, Variances, & Reliabilities ............ 93
C. Permission Letters .......................................... 95
D Informational Letter ......................................... 102
References ......................................................... 104

viii

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 3

Table 21

LIST OF TABLES

_P_age
Group Frequencies ................................ 37
Sample Demographics .............................. 39
Family Health .................................... 41
Concerns Scale Items .............................. 54
Children Scale Items ............................... 55
Concern Scale Items ............................... 57
Spouse Concerns Scale Items ....................... 58
Spouse Concerns Scale Items ........................ 59
Family Care Needs Scale Items ...................... 61
Beliefs Scale Items ................................ 62
Beliefs Scale Items ................................ 63
Feelings Scale Items .............................. 65
Feelings Scale Items ............................. . 66
Coping Scale Items ................................ 67
Information Resources Scale Items ................... 68
Coping Scale Items ............................... 70
Information Resources Scale Items ................... 7O
Coping Helpfulness Scale Items ...................... 71
Family Coping .................................... 72
Means, Standard Deviations, & Reliability .............. 76
Sample Items from FPI ............................. 92

ix

LIST OF TABLES

Page
Table 22 Means, Standard Deviations, & Reliabilities ............ 94

Figure 1
Figure 2
Figure 3

Figure 4

LIST OF FIGURES

Page
Bronfenbrenner Nested Ecological Model .............. 17
Bronfenbrenner’s Process Model ...................... 18
Combined Models ................................. 20
Operational Map .................................. 49

xi

CHAPTER I

INTRODUCTION

Jackson (1996) deﬁnes a chronic health condition as “one that is long term and is
either not curable or has residual features that result in limitations in daily living
requiring special assistance or adaptation in ﬁmction” (p. 3). The National Center for
Health Statistics conducted the National Health Interview Survey on Child Health
(NHIS-CH) in 1988. They found that based on parent report an estimated 20 million
children (31%) in the United States had one or more chronic conditions, excluding mental
impairment (Jackson). Sixty six percent of the conditions were considered mild, 29%
moderate, and 5% severe, impacting the child’s function frequently or continuously.
According to Perrin (1989), the incidence of the diseases classiﬁed as chronic has not
increased but survival rates are longer.

Development in children is affected by their “physiological state, psychological
competence, and external environment” (V essey & Swanson, 1996, p. 16). As a result
development can be delayed, deviant, or unaffected by a chronic condition. In children
with marginal deﬁcits, the disease process may be prolonged by denial of a problem by
the parents resulting in a lack of recognition of symptoms needing intervention. This
delay in recognition can cause developmental sequelae (V essey & Swanson). Fatigue
may also limit the children’s ability to participate in classroom activities because of the
time and effort needed to manage their chronic condition. This may ﬁrrther hinder

development (Mearig, 1985). Children with debilitating conditions may achieve

milestones as expected only to lose them over time with progression of the disease.
Children with uncertain futures may be deprived of goal formation, which limits their
ability to learn since this longitudinal perspective is important in shaping cognitive
processes (Vessey & Swanson). The treatment itself, side effects of drugs and radiation
can add to temporary or long-term developmental interruptions.

The characteristics of the child also impact the child’s development. The age of
the child at the time a condition occurs will greatly inﬂuence the child’s development.
Many children develop the resilience to overcome their chronic conditions and excel in
life (Vessey & Swanson, 1996). Sinnema (1991) states that “a strong self-concept, or a
positive interpretation of one’s own individualism, is developed through successfully
mastering a variety of physical, intellectual, social, and emotional tasks” (p. 484).
Hertzig (1992) reported that although a single condition does not appear to effect the
child’s psychological outcomes, multiple conditions do. He states that “factors known to
place children at greater risk for psychological co-morbidity are 1) having a poor self-
concept, 2) having a dysfunctional family, and 3) living in an isolated area and/or
poverty” (p. 25).

Family resilience, cultural orientation, and social class all inﬂuence development
in children with chronic conditions (V essey & Swanson, 1996). A family crisis occurs at
the time that a child is diagnosed with a disease process. This is especially true with a
child who has a condition that is potentially chronic in nature. The farnily’s reaction to
the crisis is individual to the family and may be based on preconceived ideas of what the

diagnosis means (Shepard & Mahon, 1996). Once the family accepts the condition as

chronic, normalization needs to occur. This places the emphasis back on the child instead
of the condition (Shepard & Mahon).

Chronic conditions may be costly to the family in ways of medical care, special
diets, transportation, babysitting for siblings, and time lost from work (Shepard &
Mahon, 1996). Shepard and Mahon go on to state that “a primary need of most families
is emotional support and practical help” (p. 49). But race, ethnicity, parental gender and
age may inﬂuence the ways they utilize support (Williams, 1993, & Winkel, 1988).
According to Shepard and Mahon, the work of parenting children with chronic conditions
is qualitatively different than parenting children without chronic conditions. But, they go
on to say that the needs of these parents are the same as the parents of children without
chronic conditions. Knowledge about normal growth and development, care of minor
childhood diseases, management of childhood behavior, diet, physical and ﬁscal ability to
parent future children, and the child’s future as a parent his or herself is sought by parents
of children with and without chronic conditions.

According to Starn (1996) “the deﬁnitions of chronic conditions and disability
have often been grounded in the dominant Euro-American values of socially and
psychologically deﬁned uniformity, normative behaviors, and responses to stress and
illness” (p. 58). Starn goes on to state “varying cultural values affect decision making
regarding the care of children with special health care needs” (p. 63). Family
demographics, orientation, communication, family relationships, education, religion,
nutrition, and beliefs about health may be different from the dominant Euro-American

family.

Children with Cancer

Approximately 8,200 children are diagnosed with cancer annually in the United
States (Dragone, 1996) with an incidence of 14: 100,000 per year for children under 15
years of age. The treatments for the various childhood cancers include medications,
radiation, and surgery, all of which may involve side effects that have long term
consequences on growth and development. At the time of diagnosis the illness is
generally considered life threatening and then becomes a chronic condition over time
with varying degrees of developmental impact as cited above. Long term survival is a
reality for the majority of children with childhood cancer. Growth and development, diet,
safety, care for minor illnesses, and ﬁnancial matters are all areas of concern to parents of
children with cancer (Dragone).
Children with Cystic Fibrosis

Cystic ﬁbrosis affects multiple systems of the body. Signiﬁcant breakthroughs in
the past 15 years have resulted in these children living into adulthood. The disease,
however, demands intensive daily therapy that frequently causes fatigue and slows
development. The disease itself impacts growth of the child causing further delays. The
incidence of the disease is “approximately 1:2,000 to 2,500 live births” (McMullen, 1996,
p. 327). Again, the areas of concern for parents are generally the same, ie. growth and
development, diet, safety, care for minor illnesses, and ﬁnancial matters (McMullen).
Children with Juvenile Rheumatoid Arthritis

Juvenile Rheumatoid Arthritis (JRA) is one of the most common chronic
childhood illnesses. Singsen (1990) reports an incidence of 9 to 25:100,000 with an

“estimated 65,000 to 70,000 children in the United States affected with IRA”

(McIlvain-Simpson, 1996, p. 531). Many children go into permanent remission without
signiﬁcant complications while others must deal with residual problems. According to
McIlvain-Simpson, the goal of early diagnosis and treatment is to maximize normal
growth and development and minimize residual deformity. Physical and occupational
therapy are critical to successful treatment of the condition along with medication and
dietary counseling. JRA is a chronic, unpredictable condition that may progress despite
treatment. Children with systemic manifestations are most at risk for life threatening
sequelae. Seventy to ninety percent of children, however, will go into spontaneous
permanent remission or suffer no serious disability. The concerns of the parents are the
same as parents of children with other chronic conditions.

Parenting Children with Chronic Conditions

To promote optimal development in the child and maintain family development,
the parents must ﬁrst come to terms with the chronic condition. When they are able to
focus on the child rather than the disease, the parents are able to parent more effectively
(Mearig, 1985). Lamb (1997) reports a high incidence of marital discord and second
order effects that may occur when parenting a child with a chronic condition.

In Hymovich’s research (1976), she found parents needed information, trust in
themselves, their children, and the health professionals caring for their children. They
nwded guidance from these professionals and access to other supportive resources.
Hymovich delineates three parental tasks 1) understanding and managing the child’s
illness, 2) helping the child understand and deal with the condition, and 3) meeting the
needs of all family members. Enscar, Carlsson, Golsater, Harnrin, and Kreuger (1997)

stated that everyday life is overshadowed by the child’s condition and parents feel

powerless watching their child suffer. Parents must also deal with the child’s physical
and psychological reaction to the disease and treatment. Parents must deal with their own
strong emotions and reactions, which inﬂuence their feelings of self-esteem and impact
their concerns about the child’s future (Enscar et al.).

Fathering Children with Chronic Conditions

There is very little literature on the fathers of children with chronic conditions and
it is conﬂicting. Lamb (1997) states that fathers who are minimally involved in the
everyday care of their chronically ill children have longer periods of adjustment to the
condition or may withdraw from the children altogether. May and Samuelson’s 1989
study reported that fathers of children with disabilities received support and guidance
from fathers’ groups, neighbors, extended family, friends, and the health care team. The
researchers also reported that fathers needed to know what development was possible,
that the stages of grief they were experiencing were norml, and they needed the
opportunity to deal with family stress in a positive way (Pierce, Sarason, & Sarason,
1996).

In a preliminary study, the author found that fathers of children with cancer had
different needs than mothers (Hovey, 1991). Sterken (1996) found that for the most part
fathers felt like the forgotten parent, not involved in the frequent trips to the doctor and
the child’s treatment. Slammon (1990) found that “as time since diagnosis increased
family reﬁaming and fathers’ tendency to maintain social supports, self esteem, and

psychological stability decreased” (p. 154).

Fathering Well Children
Although there is a paucity of literature on fathering children with chronic

conditions, fathering of children in general has received much attention of late. Glennon
(1995) deﬁnes the fathering role as protector, communicator, and breadwinner. The
fathering role involvement is speciﬁc to the gender of the child and clearly inﬂuences the
child’s development (Snarey, 1993). Fathers’ involvement with children in positive,
affirming ways increases both sons’ and daughters’ intellectual competence but in
different ways. Children whose fathers participate in their care have higher levels of
social-emotional competence as children and are more successful in mid-life. Fathers
who encourage girls’ athletic pursuits and fathers who value their sons’ academic
development positively impact their children’s success as well rounded, highly adaptive
adults (Snarey).

Levine and Pittinsky (1997) view the father in the role of teacher. Involved
fathers enhance intellectual and social development by open, honest communication
between the child and father and by a good marital relationship between the father and
mother. Children also proﬁt from sharing their father’s life experiences and the
understanding, empathy, and support that he offers through coaching (Glennon, 1995).
Fathers can help their children evaluate new situations to determine how much risk is

reasonable and how to feel comfortable and unintirnidated in foreign territory (Glennon).

STATEMENT OF PROBLEM

This study will compare the needs of fathers of children with chronic conditions
(cancer, cystic ﬁbrosis, or juvenile rheumatoid arthritis) to the needs of fathers of well
children regarding concerns, family care needs, beliefs, feelings, coping behaviors and

resources, and spouse concerns using Hymovich’s Family Perception Inventory (FPI).
CONCEPTUAL AND OPERATIONAL DEFINITIONS

Within the context of this study the following deﬁnitions apply:
Concerns are conceptually deﬁned as those thoughts emanating ﬁ'om a perceived present
or potential family dysfunction. They are the worry about a family member’s current
situation and its impact upon the individual and family system.
Concerns are operationally deﬁned as those things that engage a person’s attention,
interest, or care, or that affect a person’s welfare or happiness; a worry as measured by
the FPI, such as “extra demands on my time”, “feeling worn out”, “getting to do activities
together as a family” and “I wonder how my children think about themselves.”
Famig care needs is conceptually deﬁned as information necessary for a person to
successﬁrlly provide family care. When a change in one family member occurs it
stimulates change in the family as a whole and in each individual in the family.
Family care needs is operationally deﬁned as the lack of information wanted or deemed
necessary related to one’s family care as measured by the FPI, including “physical care”,

“diet”, and “development” of one’s children.

Meg are conceptually deﬁned as opinions or convictions, conﬁdence in the truth or
existence of something not immediately susceptible to rigorous proof.

M are operationally deﬁned as truths about things that inﬂuence the way a person
lives as measured by the FPI, for example, “sometimes getting away from something
makes it easier to handle”.

Ming are conceptually deﬁned as the emotions within an individual family member
and elicited within a family system that are separate from and independent of ratiorml
thought.

Mags are operationally deﬁned as emotions or emotional perceptions or attitudes as
measured by the FPI, such as “anger”, “conﬁdence”, or “anxiety”.

M is conceptually deﬁned as those behaviors and attitudes one adopts to meet the
challenges of predictable and unpredictable family events. It is the ability to ﬁmction in a
manner tint strives to accomplish desired goals and activities within the environment.
The optimal health of the family is reﬂected in the balance between the various members’
goals and activities, and those of the group.

M is operationally deﬁned as those things a person does in order to make
circumstances better or try to make one feel better as measured by the FPI, including

' “talking with someone about my feelings”, “crying”, and “getting information”.

M is conceptually deﬁned as any physical or mental ailment that demands a change
in family routine such tint all family members are affected and role ﬂexibility is needed
to successfully adapt to the change.

mags; is operationally deﬁned as any physical or mental ailment of a child that demands

a change in parent routine and occurring in the child with a chronic condition in “the

father of a child with a chronic condition” group and occurring to any child in the home
in the “father of well child(ren)” group.
Q_h_i_lg is conceptually deﬁned as a person between the ages of newborn to 18 years who
lives at home with his/her parents.
A child with a chronic condition is operationally deﬁned as a person between
the ages of newborn and 18 years who has been diagnosed with cancer, cystic
ﬁbrosis, or juvenile rheumatoid arthritis for at least three months.
A well child is operationally deﬁned as a person within the ages of newborn and
18 years who has not been diagnosed with an illness of more than six months

duration with perrmnent physical or mental limitations.

RESEARCH OBJECTIVES

The overall purpose of this research is the identiﬁcation of fathers’ concerns,
beliefs, feelings, and coping related to the parenting responses of fathers of children with
chronic conditions and fathers of well children. In order to reach this goal, several more
speciﬁc objectives were developed to guide the research. The objectives are:

0 to compare the concerns of fathers of children with chronic conditions with
the concerns of fathers of well children regarding themselves, their spouses,
their children;

0 to compare the beliefs and feelings of fathers of children with chronic
conditions with the beliefs and feelings of fathers ofwell children regarding

caring for their children;

10

o to compare the coping strategies of fathers of children with chronic conditions
with the coping strategies of fathers of well children and how helpful these

strategies are.

RESEARCH QUESTIONS AND HYPOTHESES

The research questions and hypotheses to be explored in the study are:
Research Question 1

1.1 What concerns does the father of a child with a chronic condition identify
regarding his role in the family?

1.2 What concerns does the father of a well child identify regarding his role in the
family?

1.3 Do fathers of well children differ from fathers of children with chronic
conditions in their role concerns?

Hypothesis: Fathers of children with chronic conditions will have signiﬁcantly

greater concerns regarding their role than fathers of well children as measured on the

FPI.

Research Question 2

2.1 What concerns does the father of a child with a chronic condition identify for
his spouse?

2.2 What concerns does the father of a well child identify for his spouse?

2.3 Do fathers of well children differ from fathers of children with chronic

conditions in the concerns they identify for their spouses?

ll

Hypothesis: Fathers of children with chronic conditions will identify signiﬁcantly
greater concerns than fathers of well children for their spouses as measured on the
FPI.
Research Question 3
3.1 What family care needs does the father of a child with a chronic condition
identify?
3.2 What family care needs does the father of a well child identify?
3.3 Do fathers of well children differ ﬁom fathers of children with chronic
conditions in their identiﬁcation of family care needs?
Hypothesis: Fathers of well children will identify signiﬁcantly fewer family care
needs than fathers of children with chronic conditions as measured on the FPI.
Research Question 4
4.1 What beliefs regarding childrearing does the father of a child with a chronic
condition identify?
4.2 What beliefs regarding childrearing does the father of a well child identify?
4.3 Do fathers of well children differ from fathers of children with chronic
conditions in their beliefs regarding childrearing?
Hypothesis: Fathers of children with chronic conditions will have signiﬁcantly less
positive beliefs than fathers of well children regarding child rearing as measured on
the FPI.
Research Question 5
5.1 What feelings regarding childrearing does the father of a child with a chronic

condition identify?

12

5.2 What feelings regarding childrearing does the father of a well child identify?

5.3 Do fathers of well children differ from fathers of children with chronic

conditions in their feelings regarding childrearing?

Hypothesis: Fathers of children with chronic conditions will have signiﬁcantly less

positive feelings than fathers of well children regarding child rearing as measured on

the FPI.

Research Question 6

6.1

6.2

6.3

6.4

6.5

6.6

What coping strategies does the father of a child with a chronic condition use?
How helpful does the father of a child with a chronic condition report these
coping strategies to be?

What coping strategies does the father of a well child use?

How helpful does the father of a well child report these coping strategies to be?

Do fathers of well children differ from ﬁthers of children with chronic
conditions in the use of various coping strategies?

Do fathers of well children differ from fathers of children with chronic

conditions in the helpﬁrlness of various coping strategies?

Hypothesis: Fathers of children with chronic conditions will use coping strategies

signiﬁcantly more often, than fathers of well children as measured on the FPI.

Hypothesis: Fathers of children with chronic conditions will ﬁnd their coping

strategies signiﬁcantly less helpﬁrl when they have problems than fathers with well

children.

13

ASSUMPTIONS

Assumption 1: It is assumed that the father’s functioning within the family is important
to the function of the family as a unit.

According to Bronfenbrenner (1979), “. ..it appears that if one member of the pair
undergoes a process of development, the other does also. . . . In addition, a systems model
of the immediate situations extends beyond the dyad and accords equal developmental
importance to what are called N + 2 systems - triads, tetrads, and larger interpersonal
structures.” (p. 5). Roy (1999) deﬁnes a system as “a set of parts connected to function
as a whole for some purpose and that does so by virtue of the interdependence of the
parts.” (p. 32). Therefore, in viewing the family as a system it is assumed that the
father’s functioning within the family is important to the function of the family as a unit.
Assumption 2: Humans are capable of adaptive behavior in attempts to meet their needs.

Roy (1999) “views human adaptive systems as ﬁrnctioning with interdependent
parts acting in unity for some purpose. Living systems, however, are regarded as
nonlinear, multifaceted, and complex phenomena. The process is never viewed as a
single stimulus initiating a given response. Rather living systems, particularly human
adaptive systems, involve complex processes of interaction.” (p. 33).

Assumption 3: The parenting needs of absent fathers may be different ﬁom those of
resident fathers.

For the purposes of this study, a father is a male, living in the home with the child
and who has assumed the role of father. It is also assumed that the father reads and
understands English. For the purposes of this study a family is considered a father,

mother, and at least one child.

14

THEORETICAL BASE

Life consists of a series of developmental changes, both anticipated and
unexpected. In an attempt to deal with these changes adaptation, effective or ineffective,
takes place. The diagnosis of a long term illness within a family is disruptive of the
family process of orderly change and development. When that illness becomes a chronic
condition, the impact on the family and each of its members is immense. To study the
subject of children with chronic conditions and their impact on fathering, a theoretical
ﬁ'amework is needed.

The framework for this study evolved from two theoretical models. The two
models are the human ecological model of Urie Bronfenbrenner and the nursing model
developed by Sister Callista Roy. The nursing model ﬁts within the human ecology

model.

CONCEPTUAL MODEL

Development and Adaptation

The emphasis of the Bronfenbrenner model is human development across the life
span, while Roy looks at the world of human change and human environmental
interaction as a process of adaptation. Both models include the active involvement of the
human during change (Bronfenbrenner, 1979, 1993, 1995, 1995a; Bronfenbrenner &
Ceci, 1994; Roy & Roberts, 1981; Roy, 1984; Roy & Andrews, 1999). In

Bronfenbrenner’s model, the setting most conducive to development for an individual is

15

one that fosters the growth of mutual trust, positive orientation, goal consensus, and an
evolving balance of power in the direction of the developing person. These
characteristics of reciprocity, trust, and evolving balance of power, termed proximal
processes, lead to increasingly complex behaviors that endure overtime and into new
situations, molar activities (Bronfenbrenner, 1995). Bronfenbrenner’s concepts of
resilience, transforming incidents, turning points, and molar activities ﬁt well with Roy’s
concept of adaptation.

Roy (1981) deﬁnes adaptation as patterns of behaviors that occur at the times of
expected and unexpected change in the environment. She looks at patterns of behaviors
that endure over time and. place and deﬁnes an adaptive response as one that promotes
integrity. This integrity is demonstrated in terms of the goals of survival, growth,
reproduction, and mastery. Roy’s theory describes the process by which input into the
system creates changes in behavior patterns. These internal and external stimuli are
processed by the regulator and cognator subsystems resulting in the responses by which
adaptation occurs. Both models are based on systems theory in which input comes into
the system, is regulated by some form of control mechanism and produces output, which
in turn is utilized as input via a feedback loop.

Person-Context-Process-Time Model

m The developing person and the adaptive system are basically the same.
Roy (1984) states that the individual is always viewed in interaction with others.
Bronfenbrenner (1979) uses the dyad as his basic unit of analysis and examines the
impact of the environment on the development of the individual. There is strong

reciprocal effect of both the environment and the developing person. Both models clearly

16

include the environment. The differences lie in the nesting of the dyad within the
environment that is the hallmark of the Bronfenbrenner model and the stimuli

Macrosystem

_ , Exosystem
Timp ’ " ‘ ____________ +

 

       
 

Mesosystem Microsystem

Figure l. Bronfenbrenner Nested Ecological Model

Roy looks at within the environment and the immediacy of their impact on the person.
Bronfenbrenner uses the terms micro-, meso-, exo-, and macrosystems to delineate the
sources of stimuli (see Figure 1).

Context. Both Bronfenbrenner and Roy recognize the impact of nature and
nurture on the ability of people to grow in positive ways. Roy’s (1984) focal, contextual,
and residual stimuli are delineated by the responses demanded by their presence in the
environment. This input triggers coping mechanisms that cause effector responses and
produce output.

P_r_ocg§§ The process-time portion of the Bronfenbrenner Ecological Model
demonstrates the similarity between the focal stimuli and the proximal processes as input
that evoke adaptive or developmental responses. Bronfenbrenner (1979) focuses upon
the links in the process through which transitions occur. The regulator subsystem

processes stimuli resulting in physiologic responses.

The cognator subsystem delineates the psychological responses to internal and
external stimuli. These processes activate four areas of response; perceptual/information
processing, learning, judgment, and emotion. All of these processes lead to a
psychomotor choice of response and ultimately to the psychological response of the
individual, adaptive or ineffective.

1111p, Bronfenbrenner (1995) looks at time as an integral part of his model. His
chronosystem takes into account not only developmental timing, which he terms
biographical time, but also the impact of environmental changes across historical time

(see Figure 2). Bronfenbrenner maintains that the timing of events is more important to

 
      
   

 

 

 

 

 

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Figure 2: Bronfenbrenner’s Process Model

the development of the individual than the actual occurrence of the event itself. Roy
(1984), on the other hand, mentions time when discussing the long and short-term goals

of instrumental and expressive behaviors and the effects of interactions.

18

Combined Models

In examining the two models, I found that the Roy model belonged primarily in
the microsystem, between the proximal processes, transforming incidents and turning
points (the inputs to the system), and the mesosystem activities (the outputs).
Anticipatory guidance was a natural outcome related to the acceptance of the father role
(see Figure 3). The other factors, the school in the exosystem and the father’s belief in
the community and in the future within the macrosystem support and broaden the model.
The time element increases the breadth of the concepts and assists in clearly delineating
the context in which the changes are occurring. The long-term adaptive/developmental
responses are the same as in the separate models with future fathering behaviors as the
ultimate goal.

The Roy model elucidates an area in the larger Bronfenbrenner model. This is the
area of human behaviors within the microsystem that explains the processes by which
adaptation occurs. The Bronfenbrenner model expands the Roy model into the broader

ecological perspective.

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20

SIGNIFICANCE OF PROBLEM

Because the illness of one family member impacts the function of the entire
family system, it would be helpful to understand not only the needs of the mothers and
siblings of children with chronic conditions, but also the needs of the fathers of these
children. The microsystem is composed of all of these family members and the
functioning of the microsystem reﬂects the interaction of the various dyads within the
system. Therefore, the interdependent relationships within the system as well as the
functioning of each member are important.

Holaday (1984) looked at the coping strategies of parents of children with chronic
conditions. She identiﬁed three primary positive coping strategies, 1) assigning meaning
to the illness, 2) normalization, and 3) social support. She noted that parents who
assigned meaning to the illness were informed about the child’s illness, conﬁdent in their
ability to care for the child appropriately and maintained active life styles. Normalization
is needed to decrease the ill child’s vulnerability to stress and by doing so “minimizes the
impact of chronic illness by maximizing the child’s ability” (p. 366). Through social
support “the family accumulates successful ways of problem solving over time and tends
to view the environment as masterable” (p. 367).

Research has found that the adaptation of the child with cancer is favorably
related to parental distress levels and the social support available to them (Koocher,
1986). Results from the Cohen, Friedrich, Jaworski, Copeland, and Pendergrass (1994)
study on sibling adjustment stress the need to examine the child in a variety of ecological

contexts including parental and family ﬁrnctioning. Cox’s (1990) study, on coping with

21

pediatric cancer treatment, draws attention to the importance of the role of the parent-
child relationship in stressﬁrl situations. None of these studies, however, discusses
fathers or addresses their needs speciﬁcally.

Winkel (1988) noted that younger parents of children with juvenile rheumatoid
arthritis appeared to need more support and information about the disease than older
parents did. Newacheck, McManus, and Fox (1991) report that adolescents with chronic
conditions, including arthritis, experienced 35% more behavioral problems than
adolescents without chronic conditions.

Newacheck and Taylor (1992) report a “sevenfold increase in survival to age 21
among children with cystic ﬁbrosis” (p. 364). Venters’ (1981) ﬁndings supported two
areas of particularly stressful events for parents of children with cystic ﬁbrosis. The ﬁrst
stress was the time during which symptoms ﬁrst appeared and were recognized and the
time during which the actual diagnosis was made. The second was the inability of the
family to anticipate the severity of the child’s illness after the diagnosis was made. Over
time, differing degrees of family tension occurred dependent upon remissions and

exacerbations of the disease process.

22

CHAPTER II

REVIEW OF LITERATURE

Copious literature is available on the impact of parenting on children and their
development. There is also a body of literature on the impact of children on the marital
dyad. Literature was reviewed that examined the impact of various factors on families
and parenting in general, on parenting of children with chronic conditions; its impact on
mothers and siblings of these children, and on fathering and fathering of children with
chronic conditions.

Many factors inﬂuence parents’ approaches to parenting; “it stands to reason that
our understanding of parenting behavior will be enhanced if we consider the combined
inﬂuence of several factors rather than thinking about each factor singly” (Luster and
Okagaki, 1993, p. 227). In order to understand parental behavior, it is important to
understand the relationship between the characteristics of both the parent and the context
over time (Luster and Okagaki). Belsky (1984) discusses the various factors that
inﬂuence how individuals parent. These factors are delineated in his determinants of
parenting model, and include the parent’s developmental history, personality, work,
marital relationship, and social network as well as the child’s characteristics and
development. A major macrolevel inﬂuence on human development is socioeconomic

status (SES).

23

Inﬂuence of Socioeconomic Status on Parenting

Socioeconomic status indicates not only how much money or education someone
has, but also the types of experiences and opportunities to which the individual has access
(Okagaki and Johnson Divecha, 1993). Kohn (as cited in Okagaki and Johnson Divecha)
found that parents from different social classes differ in their parenting practices because
they hold different values for their children, and these values resulted from social class
differences.

Work shapes parents’ conceptualizations of how their environment operates and
the qualities required to be successful in that environment (Ogbu as cited in Okagaki and
Johnson Divecha, 1993). This in turn shapes parents’ values about the characteristics that
are important to the success of their young (Crouter and McHale, 1993). Opportunities in
the work place vary in their support of positive parenting behaviors. This may be through
skill acquisition, informal support or formal beneﬁts and programs that enable parents to
carry out their parenting roles more effectively.

Kohn (as cited in Okagaki & Johnson Divecha, 1993) argues that men see the
world differently depending on their position in the occupational hierarchy. The
characteristics important to attaining success in their jobs inﬂuence the qualities they
value and want for their children. This in turn inﬂuences the characteristics they will
support or discourage in their children. Social networks also inﬂuence parenting
behaviors.

Glennon (1995) views the role of the father as protector, communicator, and
breadwinner. He views the inﬂuences on the fathering role as the father’s own growth

and development, his desire to ﬁnd his own father, and the timing of his fatherhood.

24

Belsky (1984) writes of multiple inﬂuences on a father’s fathering style. These
include the child’s individual characteristics, the father’s personality and psychological
well being, and the contextual sources of support and stress he experiences. He goes on
to state that a father’s social system will enhance his fathering behavior when it provides
emotional support, instrumental assistance, and guidelines for social expectations.

Social Networks for Parents

Personal networks inﬂuence the family and individual by bringing the values of
society into the home (Cochran, 1993). In this way, a parent’s network reﬂects his or her
standing in society. Therefore, it is important to understand that the inﬂuence of the
parents’ networks on their parenting attitudes and behaviors reﬂects their positions in the
social structure and its impact. Unlike social support, network relations can be both
supportive and stressful and their inﬂuence is very broad. Because personal networks are
inﬂuenced by the larger society, sociologists believe that family income, the educational
level of parents, and the status and complexity of their occupations, to a large extent
determine the family’s social class standing. Cochran states “of these factors, Fischer
found that educational level had the most consistent effect upon the personal networks”
(p. 155). The preferred explanation is that with more education and greater income,
individuals obtain social skills and material resources that can be used to build and
maintain network ties. Culture and class also inﬂuence the size of social networks
(Cochran). There has been some speciﬁc attention given to fathering.

Fathering
In an article in The New York Times (August 11, 1998), Elizabeth McGuire

writes about the search by women in their twenties for men who are willing to balance

25

careers and family involvement. She states that there is a long way to go within
corporate America to structure workplaces that are family friendly. She continues that
“instead of the traditional corporate ladder, which emphasizes stamina, we must seek a
model of career progress that resembles mountain climbing, which requires ﬂexibility,
lateral moves and lengthy rest at base camp” (p. A20).

In a 1996 Gallup Poll conducted by the National Center for Fathering, 61.1% of
the fathers interviewed reported that they would be more productive at work if their
employers implemented more family-ﬁiendly policies. The poll also showed that 90.3%
of the men and women interviewed agreed that “fathers make unique contributions to
their children’s lives.” However, they needed to increase their knowledge and skills.

Snarey (1993) studied fathers and found that they have a clear inﬂuence on their
children’s development. This was evident in the areas of intellectual competence, social-
emotional competence, and nontraditional continuities. Coltrane (1996) states that the
division of housework in a family reﬂects family values and that responsibility for
childcare and housework go hand in hand. Social, friendship, occupational, and kin
networks all inﬂuence the division of paid and family labor.

Nelms (1997) stated that fathers encourage exploration, provide safe places to
make mistakes, and expect good work in school. All of these factors “foster better
problem-solving abilities and cognitive development” (p. 154). Fathers are also
important as role models for both their sons and daughters and help form their children’s
gender identities.

Belsky, Gilstrap, and Rovine (1984) found that while through the ﬁrst nine

months of life mothers and fathers treat their male and female offspring alike, there was a

26

much greater difference in the behaviors of fathers in respect to the child’s birth order,
than the behaviors of mothers. “Although fathers are as capable as mothers of being
highly involved with and sensitive to their infants. . .under naturalistic, everyday
conditions, the behavior of mothers and fathers is strikingly different” (p. 701). Fathers
are much less involved. In Volling and Belsky’s work (1992) they cited MacDonald and
Parke’s ﬁnding that “whereas mothers’ verbal stimulation is correlated with sons’ peer
popularity, ﬁthers’ physically playful, affectionate, and socially engaging interaction is
predictive of boys’ popularity with peers” (p. 1210). They also stated that facilitative and
affectionate fathering behaviors appear to promote a prosocial and friendly relationship
among siblings.
Age of Child

Easterbrooks and Goldberg (1984) studied the associations between
characteristics of fathering and toddler development. In looking at 75 toddlers and their
parents they found that high father involvement related to optimal toddler development.
Father involvement contributed uniquely to child development and also was seen in
mother child interactions as well. They found that the father’s involvement was
associated with children’s problem-solving behavior more strongly than attachment and
that the amount of time they spent with the child was more inﬂuential in the child’s
development than taking on caregiving responsibilities. For fathers, behavioral
sensitivity, and a relaxed manner were most consistently related to optimal toddler
development. They conﬁrmed in the child-father relationship that children who were
securely attached to their fathers also exhibited more positive affect and orientation in

problem solving. There was a trend for “. . .fathers to spend more time with their toddler

27

sons than daughters. Both qualitative and quantitative aspects of fathering were more
strongly related to toddler development for boys than for girls” (p. 751).
Sex of Child

Biddulph (1998) also declares differences between raising boys and raising girls.
He states that boys need a great deal of affection during the years from birth to six.
However, from six to 14 they become very interested in “maleness,” and the father
becomes the dominant parent. Most boys love to be physically active, hug and play
wrestle with their fathers. They enjoy stories about his life. They like to meet his ﬁiends
and see what he does for a living. They love to have him teach them things. By copying
their fathers, boys learn how to show their emotions and attitudes in a healthy way.
Rough and tumble games teach boys “self control by stopping and setting some rules
when the game gets too rough” (p. 95). Fathers also need to teach their sons to respect
their mothers and to respect themselves.

In Cherishing our Daghters (Bassoff, 1998) the author discusses the impact of
fathers on their daughters’ development. She states “It is {four her mother that a girl
learns tobe awoman; it is ﬁ'omher fatherthat she learns whatto expect ﬁ'ommeninthe
way of love and respect” (p. 30). The differences in mothers’ and fathers’ care are most
evident in physical contact, play, discipline, and communication. From her father she
also learns “focus, determination, direction, assertiveness, ambition, and
adventurousness” (p. 31). This combination of characteristics moves a girl toward a
mature, balanced, and ﬂexible personality. Fathers, however, frequently see themselves
as outsiders. The son will develop in ways that are familiar, whereas the daughter is

growing in unfamiliar ways. This can cause feelings of insecurity in the father. The role

28

of the father today is trailblazer and protector. During her teenage years, he is also the
affrrmer of his daughter’s femininity in a non-sexual way by taking her seriously as a
person (Bassoﬁ).

When daughters become adolescents, their relationships with their fathers change.
According to Adams (1999), fathers often feel alienated from their teenage daughters.
She states that fathers need to offer acceptance and encouragement to their daughters.
She encourages fathers to connect with their daughters on a “one-on-one” basis, timing in
to not only what their daughters are saying but to the emotions behind the words.
Families of Children with Chronic Conditions

Few children are not vulnerable to risk of psychological injury at one time or
another. According to research most children can cope with one or two risk factors. But
the accumulation of risk factors jeopardizes development; especially when there are no
compensatory forces at work. By preventing the further accumulation of risk we can
endeavor to prevent the precipitation of developmental damage (Garbarino and
Abramowitz, 1992).

Often times, a family of a child with a chronic condition faces situations that have
no ready—made solutions. This can be so disruptive to family routines that the family may
be at a loss as to where to begin and, dependent on the parents’ sense of competence, they
may feel incapable of improving the situation (Patterson and McChrbbin, 1983).

Parents of Children with Juvenile Rheumatoid Arthritis

Winkel (1988) studied 118 parents of children with juvenile rheumatoid arthritis

(JRA) to determine their needs. Out of these parents, 37% indicated a desire to join a

support group. Travel time, distance, the child’s state of remission, and ﬁnances were

29

considerations in making the decision. Younger parents and mothers of children with
JRA were more likely to express a desire to participate in a support group. No literature
was found that addressed the issues of fathers relative to other family members or the
child with JRA exclusively.
Mothers of Children with Chronic Conditions

While the family unit is typically acknowledged, much of the early literature on
parents’ responses to their children’s illnesses has studied mothers. McCollum and
Gibson (1970) studied 56 families of children with cystic ﬁbrosis. Mothers reported
many negative feelings toward themselves and their infants before diagnosis related to
feeding problems and failure of the infant to thrive. Among other negative feelings post
diagnosis, intense grief, guilt, resentment, anger, anxiety and helplessness were also
reported. Chodoff, Friedman, and Hamburg (1964) reported that mothers of children
with malignant disease searched for meaning, blamed themselves or others for the child’s
illness, or found religious signiﬁcance in the event. Binger, Ablin, Feuerstein, Kushner,
Zoger, and Melkelson (1969) reported mothers feeling physical distress, depression,
inability to function, anger, hostility, and self blame gradually subsiding to acceptance
and resolution in meeting the special needs of the child with cancer.
Sibling of Children with Cancer

Numerous studies have been done on the effects of childhood cancer on the
siblings of the ill child. High levels of family cohesion and adaptability were associated
with better adaptation for siblings (Cohen, Friedrich, Jaworski, Copeland, and
Pendergrass, 1994). Eight major sources of anxiety and isolation were identiﬁed by

Bendor (1990) related to the siblings of children with cancer. McKeon (1987) looked at

30

the tension between the conﬂict and harmony that exists between siblings. She stated
that parental inﬂuence provided the support and inﬂuence that facilitated sibling
interaction. Variables inﬂuencing the dynamics of the relationship included sibling
contextual variables, parental contextual variables, family contextual variables, and
sociocultural variables. Bush (1987) studied the factors that contribute to good versus
poor adaptation in healthy siblings of pediatric cancer patients. Signiﬁcant relationships
were found between anxiety and perceived siblings’ similarity, family cohesion, and
family expression. A study of the speciﬁc factors in the individual personality, family
environment, and external family support system, which may inﬂuence the healthy
sibling’s adaptation in relationship to the child with cancer, revealed some important
trends. These included the sibling’s perceptions of self worth, family cohesion, family
communication and the parents’ perception of the sibling’s activity level as possible
indicators of positive or negative adaptive sibling responses (Asada, 1987).
Fathering Children with Chronic Conditions

In a study of fathers of children born with congenital anomalies, Baumann and
Braddick (1999) found that fathering, for the participants in the study, was “a desire to
grasp the situation, mingled with disturbing feelings, while facing one’s own limits” (p.
373). The fathers reported that their major feelings were worry and a sense of
responsibility. They perceived their importance to their wives and children increased; as
the need for income and medical beneﬁts increased they became more internally and
family focused. The fathers felt their children were vulnerable and that they needed to be
more circumspect about their situation. In some instances, having a child with special

needs had strengthened their marriages. The fathers also reported that they were more

31

present oriented than they had previously been. “They wondered what challenge each
day would bring or if their child would survive” (p. 276). Many of the fathers in the
study reported the importance of receiving information from health professionals and
self-help groups.

In Sabbeth’s (1984) study of parents with chronically ill children, fathers had
special difficulty in dealing with the lack of control imposed by the illness resulting in
feelings of helplessness. She found that men, accustomed to actively working to achieve,
tended to hide their feelings and vulnerabilities. This contributed to a sense of isolation.
McCubbin, McCubbin, Patterson, Cauble, Wilson, and Warwick’s (1983) study of
families of children with cystic ﬁbrosis, cerebral palsy, and myelomeningocele compared
mothers’ and fathers’ responses. This study showed those fathers’ use of coping patterns
was different and complimentary to the mothers’ in supporting the system-maintenance
dimensions of family life. These ﬁndings support that fathers have unique needs within
the family system that may not be addressed by current support systems. Moyer (1989)
interviewed 160 parents of children with diabetes. Although the parents felt they were
dealing with the care of the child related to the disease process, rmny had “immediate
and ongoing needs for information, support, and help with several aspects of their child’s
care and development regardless of the age of the child or the duration of the condition”
(p. 543).

Fathering Children with Cystic Fibrosis

In another study, McCubbin (1984) indicated positive correlations between family

income and “the father’s effort to maintain family integration, cooperation, and an

optimistic deﬁnition of the situation” and between family income and the age of the child

32

 

related to “the father’s attempts to understand the health care situation through
communication with other parents and consultation with the health care team” (p. 413).
Venters (1981) reported a need to reorganize home routines around the needs of the child
with cystic ﬁbrosis. These families also incurred unexpected expenses for nwdical care
and equipment that was needed in the home to care for the child. She found that both
“endowing the illness with meaning” and “sharing the burdens of the illness” were
signiﬁcantly related to long term positive family adaptation (p. 292). I found no other
literature speciﬁc to fathers of children with cystic ﬁbrosis.
Fathering Children with Cancer

Only three studies were found that speciﬁcally addressed the needs and concerns
of fathers of children with cancer. The author (1991) found that there were signiﬁcant
differences in the satisfaction with employment status for mothers and fathers while
satisfaction with the spousal relationship was signiﬁcantly related to mothers’ responses
but not to fathers’. Cayse (1994) studied 23 fathers of children with cancer and found
their most common concern was their “child’s ﬁrture”. The most common and most
helpful coping strategy for these fathers was “praying”. Sterken’s study (1996) of fathers
of children with cancer identiﬁed several issues. These include feelings of exclusion by
the medical team as active participants in the child’s care, lack of ﬁrst hand information
on the child’s treatment, and follow-up care. They also expressed the need for
restructuring of socialized masculine ideals, roles, and thought patterns, the need to
regularly voice their concerns, and the need to feel that their opinions and questions were

valued.

33

Coping of Families of Children with Chronic Conditions

The National Commission on Children reported that important characteristics of
many strong families include “the ability to adapt to and cope with stressful and
potentially damaging events, as well as predictable life cycle changes” (as cited in
Garbarino, 1992, p. 80). Part of this adaptability comes from the family’s social network
including friends, extended family, neighbors, and community organizations.

Help can come from professionals or lay people (Garbarino, 1983). Garbarino
goes on to state that

rather than looking to the individual, those working within this ﬁ‘amework look to

the collective - to the social network, to the extended family, to the group.

Proponents of this approach see that social resources can compensate for

individual inadequacies and provide buoyancy so that individuals need not sink

even if they do not know how to swim. What is more, those who emphasize
social resources argue that no one can rmster the heaviest seas of life alone and
that even those with normally adequate levels of personal resources may need to

be thrown a lifeline or even a life raft in time of extraordinary stress (p. 20).

The result is a joint product containing both personal and social resources. This help
consists of the resources the individual brings to the situation and the resources available
in the social environment. The goal of professionals is to promote successful coping and
assist individuals in converting these stresses into growth-inducing challenges
(Garbarino).

Coping competencies are a mixture of learning (experience) and innate capacity
(temperament) and must be translated into speciﬁc behaviors appropriate to each
situation. Individuals bring their effective or ineffective coping behaviors with them to

each new situation, and these experiences have a cumulative effect. These cumulative

experiences are important in differentiating among individuals and between groups, and

34

they are important in determining the level of social resources available from a group to
its members (Garbarino, 1983).

“This brief summary of ﬁndings regarding parental coping emphasizes
that parents employ active efforts to manage the stress and hardships associated with
having a chronically ill child, while at the same time coping with other normative life
changes and sources of stress in the family” (Patterson and McCubbin, 1983, p. 34).

Both negative and positive consequences are possrble for overall family functioning.
Through effective adaptation, physical, emotional, and social growth and development of
all family members, including the chronically ill child, can occur. Because of the physical
and emotional demands placed on parents of children with chronic conditions, it is
important for parents to balance this childcare with care for themselves as individuals and
for the family as a whole. The father’s role and his coping efforts in maintaining family
organization, reducing conﬂict, and promoting the child’s health are important. Patterson
and McCubbin further state “Being aware that certain predictable patterns emerge over
time within families with a chronically ill child is the ﬁrst step in lessening the stressful

consequences” (Patterson and McCubbin, p. 34).

35

CHAPTER III
METHOD

Their physical and psychological status and the surrounding environment affect
development in children. Development can be delayed, altered, or unchanged by a
chronic condition or its treatment. Parents are critical components in a child’s
development. Culture, social status, and family resilience must also be considered.

Many studies have been published utilizing mothers of children with chronic
conditions as subjects when examining parenting needs. There are very few studies
available that examine fathers’ needs related to parenting children with chronic
- conditions. Since the interactions between members of the entire family are important, it
is of interest to investigate the needs of fathers parenting children with chronic conditions
and to compare them to the needs of fathers parenting well children.

Fathers of 48 children with chronic conditions; cancer, cystic ﬁbrosis, and
juvenile rheumatoid arthritis, were compared with 51 fathers of children without chronic
conditions in respect to their 1) concerns about themselves, their spouses or partners,
their children; 2) beliefs and feelings regarding caring for their children, and
3) coping strategies and their helpfulness. An exploratory, cross sectional, non-
experimental research design was used. Fathers responded to questionnaires in their
homes.

,I \E.” The sample was taken from parent lists of children seen in the immunology,

/. -—... m.“
r - a“--- x-

oncology, and pulmonary clinics and by private pediatricians in the—general medical

36

clinic at Children’s Hospital of Michigan. There were 48 fathers parenting children with
chronic conditions and 51 fathers parenting well children. This number was chosen to
provide an analytical power of .8 and medium effect size.
Sampling Procedures

The names of these fathers were taken ﬁom lists provided by the social workers in
the Hematology/Oncology Clinic who indicated which families had fathers living in the
homes of the oncology patients they were covering. This included all the families
meeting the criteria and currently seen in the clinic. Forty-four fathers were identiﬁed

MM a“.--
and of these, 17 responded and 16 were included‘in the sample (see Table 1).

1...“...
. "qu
a»...

r

Table 1. Group Frequencies

 

 

Group Frequency
Chronic Conditions
Cystic Fibrosis 16 (33.3%)
Cancer 18 (37.5%)
Juvenile Rheumatoid Arthritis 14 (29.2%)
Total 48
Well 51

 

 

The fathers of children with cystic ﬁbrosis also comprised the convenience
sample chosen ﬁ'om the pediatric population of the Pulmonary Clinic. The fathers were
' identiﬁed by chart audit and 36 were sent letters of information and questionnaires. Of
these, 20 questionnaires were completed and returned and 18 were appropriate for use in
the study.
The fathers of the children with juvenile rheumatoid arthritis were chosen from
the Immunology Clinic population of the same urban medical center. Thirty packets

containing informational letters and questionnaires were given to the senior attending

37

physician responsible for the clinic. She then distributed them to the families she
determined met the study criteria. Of these thirty, 14 responded and were included in the
study.

A convenience sample of the fathers of the well children was selected from the
General Pediatric Clinic’s private practice population of the same urban medical center
by chart audit. Forty packets were sent out to fathers with a return of six completed
questionnaires. Because of the low response rate in this group, fathers in the community
were also solicited by the researcher and packets distributed. Of the total number of 102
fathers of well children receiving packets, 52 completed questionnaires were returned and
51 were included in the study.

The fathers of children with chronic conditions ranged in age from 20 to 69 and
the fathers of well children ranged in age ﬁ'om 20 to 59 (see Table 2). The mean ages in
both groups were 30 to 39 years. The family incomes in the chronic condition group
ranged from $14,000 to greater than $50,000 with a mean of $40,000 to $49,000 and a
standard deviation of 1.13. In the well group the range was ﬁ'om $30,000 to greater than
$50,000 with a mean of $40,000 to $49,000 and a standard deviation of .48.

The educational range for the fathers in the fathers of children with chronic
conditions group was from less than seventh grade to graduate school with a mean of
2.73 years of college. In the fathers of well children group the fathers’ education ranged

from tenth grade to graduate level with a mean of 3.02 years of college. O

38

Table 2. Sample Demographics

 

 

 

 

 

 

 

 

 

 

 

Demographic Families of Children with Families of Well Children
Chronic Conditions
Income M $40,000 - $49,000 $40,000 - $49,000
SD 1.13 .48
Rggg $14,000 - $50,000 $30,000 - $50,000
Fathers Mothers Fathers Mothers
Age: 20 - 29 years 2 (4.2%) 2 (4.2%) 3 (5.9%) 8 (15.7%)
30 - 39 years 15 (31.2%) 20 (41.7%) 22 (43.1%) 21 (41.2%)
40 — 49 years 23 (47.9%) 22 (45.8%) 18 (35.3%) 20 (39.2%)
50 - 59 years 6 (12.5%) 3 (6.3%) 8 (15.7%) 2 (3.9%)
60 - 69 years 2 L4.2%) 1 (2.1%)
Family Income:
814,000-519,999 1 (2.1%)
820,000-529,999 3 (6.2%)
530,000-839,999 9 (18.8%) 2 (3.9%)
840,000-349,999 6 (12.5%) 5 (9.8%)
$50,000 or more 24 (50.0%) 43 (343%)
Education:
7" Grade or < 1 (2.1%) 1 (2.1%)
10“ or 11" Grade 2 (4.2%) 1 (2.0%)
12" Grade 1 (2.1%) 13 (27.1%) 8 (15.7%) 4 (8.0%)
College 28 (58.3%) 25 (52.1%) 31 (60.8%) 32 (64%)
Graduate School 12 (25.0%) 7 (14.6%) 13 (ZS-5%) 14 (28.0%)
Ethnic Background
Asian 1 (2.1%) 1 (2.0%) 2 (4.0%)
Black 4 (8.5%) 4 (8.5%) 6 (12.0%) 6 (12.1%)
White 41 (87.2%) 40 (85.1%) 42 (84.0%) 39 (78%)
Hispanic 1 (10%)
Native American 1 (2.1%) 1 (10%)
Other 1 (2.1%) 2 (4.2%) 1 (2.0%) 1(2.0%)

 

39

Information was also gathered concerning the fathers’ spouses. The majority of
wives were between the ages of 30 and 49 years. The age span for the wives of fathers of
children with chronic conditions ranged from 20 to 69 years while the age range for
wives of fathers of well children was slightly lower, 20 to 59 years. Three (6.3%) of the
wives of fathers of children with chronic conditions had less than a high
school education, while the majority, (52.1%) had a year or more of college education (M
2.37, SD 1.16) and seven (14.6 %) attended graduate school.

Fathers reported the health status of themselves and their spouses, as well as that
of their children (see Table 3). Two fathers in each group rated their own health as poor
to fair and ﬁve (10.4%) fathers of children with chronic conditions rated their wives’
health as poor to fair also. The majority of fathers in both groups rated their health and
their wives’ health as good to very good. Excellent health was reported by 6 (12.5%)
fathers of children with chronic conditions and by 10 (19.6%) fathers of well children.
They also reported their wives’ health as excellent (10.4% and 27.5%).

In the fathers of well children group, 32 (64%) of the wives had at least one year
of college (M 3.02, SD 1.26) and twice the number of wives (14, 28%) had attended
graduate school as in the fathers of children with chronic conditions group. The ethnicity
of the two groups was very similar for both parents.

Although only two percent of the children in the chronic conditions group were
considered to be in excellent health, 19 (41.3%) were thought to be in very good health,
and another 17 (37%) in good health. Only eight (17.4%) were labeled as having poor
health in this group. In the well group, 24 children (48%) were considered to be in

excellent health, while 22 (44%) were thought to be in very good health, and 4 (8%) in

40

 

Table 3. Family Health

 

 

 

Health Status Past Three Fathers of Children with Fathers of Well Children
Months Chronic Conditions
Fathers: Poor/Fair 2 (4.2%) 2 (3.9%)
Good 21 (43.8%) 16 (31.4%)
Very Good 19 (39.6%) 23 (45.1%)
Excellent 6 (12.5%) 10 (19.6%)
Mothers: Poor/Fair 5 (10.4%)

 

 

 

 

Good 25 (52.1%) 16 (31.4%)
Very Good 13 (27.1%) 21 (41.2%)
Excellent 5 (10.4%) 14 (27.5%)
Children: Poor/Fair 8 (17.4%)
Good 17 (37.0%) 4 (8.0%)
Very Good 19 (41 .3%) 22 (44.0%)
Excellent 2 (4.3%) 24 (48.0%)
Child Care
Someone to take care:
For a day 37 (78.7%) 43 (84.3%)
For a week 21 (44.7%) 40 (78.4%)

 

good health. None of the children in the well group were labeled as having poor health.

Instrumentation

The Hymovich Family Perception Inventory (FPI) was employed for data

collection for this study. The Hymovich instrument contains nine scales, eight that can

be used independently or together as applicable (see Appendix A). For the purposes of

this study all nine scales were used. There was a total of 165 items on the questionnaire

and an additional 36 questions concerning subject, child, and spouse demographics.

Likert scales were used in each scale to rate the fathers’ answers. The average reading

level of all scales in the FPI is grade 6.4. The highest reading level is grade 7.1 for the

scale on beliefs and feelings; the lowest reading level is grade 5.8 for the coping scale.

41

I

Testing of its content validity, reliability, and comprehensibility has been ongoing
since development of the original instrument, The Chronicity Impact and Coping
Instrument: Parent Questionnaire (CICI: PQ). The current instrument, the FPI, is a
revision of this original questionnaire. The most recent internal consistency ﬁgures of the
FPI are generally high with the majority of the alpha reliabilities ranging from .95 to .73.
However, the belief scale reliability alpha, which is .59, is low and Dr. Hymovich states
that “this scale has always been low and should be used with caution” (see Appendix B).

The original questionnaire consisted of 500 closed-ended questions developed
from analyses of interviews of families with osteogenesis irnperfecta, cystic ﬁbrosis, and
juvenile diabetes mellitus. The pilot study was then run with a sample consisting of 29
parents attending a variety of clinics in a university hospital (Hymovich, 1981). The
second pilot study with a sample of 33 parents with demographics similar to the ﬁrst
group utilized the revised CICI: PQ. The reliability coefﬁcients ranged from .76 to .92.
The third pilot study utilized the new version of the CICI: PQ. This was a sample of 44
parents, visiting the university clinics previously utilized. The reliabilities for this study
ranged from .79 to.94 with an overall reliability of .95 (Hymovich, 1984). Three
revisions were made to reduce redundancy and eliminate questions speciﬁc to certain
conditions and age groups.

The content validity was established through review by a clinical psychologist,
three master’s prepared registered nurses working with families of children with chronic
conditions and one doctorally prepared nurse faculty member working with chronically
ill adults. Internal consistency, using Hoyt’s coefficient demonstrated reliabilities in the

mid nineties. (Hymovich, 1983). A British study by Moyer (1989) utilized the revised

42

CICI: PQ in which 160 parents of 10- to 18-year olds with diabetes were interviewed.
She reported only the reliability of the parents’ concerns scale, which was coefficient
alpha .87. The author (1991) utilized the third revision of the CICI: PQ, renamed the
Parent Perception Inventory (PPI), in a study of 22 parents of children with cancer. The
reliability of the scales ranged from an alpha of .94 for the feelings scale to .62 for the
beliefs scale. Utilizing all but the siblings and spouse concerns and coping scales, Cayse
(1994) found the internal consistency reliability of the PPI to range from .33 to .92 and
the test-retest reliability coefficient to range form .74 to .92. “The internal consistency
reliability for each section used was ‘concerns,’ .88; ‘coping,’ .62; and ‘helpfulness of
coping,’ .80. For this study, the internal consistency estimate for each section was
‘concerns,’ .91; ‘coping,’ .82; and ‘helpﬁrlness of coping,’ .64” (p. 104).

Fathers’ concerns regarding themselves in relation to other family members were
measured by asking them to indicate on a ﬁve point Likert scale how much concern they
have had in the last three months in certain deﬁned areas. Questions were coded so that
higher feelings of concern are reﬂected in a higher score. See Appendix A, Table 21 for
sample questions.

Family care needs as perceived by the fathers were measured by a ﬁve point
Likert scale that includes health, growth and development, and physical needs. Fathers’
beliefs regarding factors inﬂuencing their way of living were measured by asking the
fathers to indicate on a ﬁve point Likert scale their beliefs about things that inﬂuence
their way of living in certain areas. Fathers’ feelings regarding their families were

measured by asking the fathers to indicate on a four point Likert scale certain deﬁned

43

feelings that they have experienced in the past three months. Questions were coded so
more positive beliefs and feelings are reﬂected in higher scores.

Fathers’ coping strategies were measured by asking them to indicate on a four
point Likert scale the coping strategies they have used in the past three months. On a
companion four point Likert scale fathers were asked to indicate how helpful these
coping strategies are for them. Questions were coded so that more positive and more
helpﬁrl coping strategies are reﬂected in higher scores.

Fathers’ concerns regarding their child(ren) were measured by asking them to
indicate on a six point Likert scale how their child(ren) has/have been coping in certain
deﬁned areas in the past three months. Their perceptions regarding their spouses’
concerns were measured by asking them to indicate on a four point Likert scale how
much concern they think their spouses have had in certain deﬁned areas in the last three
months.

Fathers’ perceptions of their spouses’ coping related to family needs were
measured by asking the fathers to indicate on a four point Likert scale their perceptions of
their spouses’ coping related to family needs. Questions were coded so that more positive
coping strategies and greater concerns are reﬂected in higher scores.

To promote optimal development in the child and maintain family development,
the parents must ﬁrst come to terms with the chronic condition. When they are able to
focus on the child rather than the disease, the parents are able to parent more effectively
(Mearig, 1985). Parents must deal not only with the child’s psychological and physical
reaction to the disease and treatment, but with their own emotions and reactions as well.

By using Hymovich’s Family Perception Inventory it is possible to study the various

 

factors involved in this process and to describe them in detail. The current version of Dr.
Hymovich’s instrument allows exploration of parenting concerns, needs, beliefs, feelings,
and coping for all fathers, those with well children and those with children with chronic
conditions and for comparison of those needs. There is little information on the parenting
needs of fathers of children with chronic conditions and it would be helpful to have a
clearer idea of what those needs are and if they differ ﬁom those of fathers of well 1
children. The FPI facilitates collection of this data for analysis.
Conceptual And Omrational Definitions

Within the context of this study the following deﬁnitions will apply:

Control Variable.

Fathers is conceptually deﬁned as the adult male in the home with the child who
provides nurturance and paternal care.

Fathers is operationally deﬁned as any adult male living in the home with the
child who has taken on the fathering role.

Indeppndent Variables.

Child is conceptually deﬁned as a person between the ages of newborn to 18 years
who lives at home with his/her parents.

Child with a Chronic Condition is operationally deﬁned as a person
between the ages of newborn and 18 years who has been diagnosed with cancer,
cystic ﬁbrosis, or juvenile rheumatoid arthritis for at least 3 months.

Well Child is operationally deﬁned as a person within the ages of newborn
and 18 years who has not been diagnosed with an illness of more than six months

dru'ation with permanent physical or mental limitations.

45

 

Depgndent Variables.
Family Care Behaviors is conceptually deﬁned as those behaviors that strive to

accomplish desired goals within the family environment, as reﬂected in the balance
between the various members’ goals and activities, and those of the group and those
behaviors necessary for successful coping within the family structure.

Family Care Behaviors is operationally deﬁned as those behaviors identiﬁed in
the Family Care Needs, Father Coping, and Spouse Coping scales of the Hymovich
Family Perception Inventory (FPI).

Family care needs are conceptually deﬁned as information necessary for a person
to successﬁrlly provide family care. When a change in one family member occurs it
stimulates change in the family as a whole and in each individual in the family.

Family care needs is operationally deﬁned as the lack of information wanted or
deenred necessary related to one’s family care as measured by the FPI, including
“physical care,” “diet,” and “development” of one’s children.

Coping is conceptually deﬁned as those behaviors and attitudes one adopts to
meet the challenges of predictable and unpredictable family events. It is the ability to
ﬁrnction in a manner that strives to accomplish desired goals and activities within the
environment. The optimal health of the family is reﬂected in the balance between the
various members’ goals and activities, and those of the group.

Coping is operationally deﬁned as those things a person does in order to make
circumstances better or try to make one feel better as measured by the FPI, including
“talking with someone about my feelings,” “crying,” and “busying myself”.

Increased Energy Needs are conceptually deﬁned as the physical energy increase

that occurs when one is dealing with increased physical, emotional, and mental tasks.

46

 

Increased Energy Needs are operationally deﬁned as those needs identiﬁed in the
Father’s and Spouse’s Concerns Scales and the Children Scale of Hymovich’s Family
Perception Inventory (FPI).

Concerns are conceptually deﬁned as those thoughts emanating from a perceived
present or potential family dysfunction. They are the worry about a family member’s
cru'rent situation and its impact upon the individual and family system.

Concerns are operationally deﬁned as those things that engage a person’s
attention, interest, or care, or that affect a person’s welfare or happiness; a worry as
measured by the FPI, such as “extra demands on my time,” “feeling worn out,” or
“getting to do activities together as a family”.

Bonding/Adoption of the Fathering Role is conceptually deﬁned as the behaviors
and perceptions the father has toward his children and their behavior, including his
feelings and beliefs related to family functioning and the fathering role.

Bonding/Adoption of the Fathering Role is operationally deﬁned as the attitudes,
feelings and beliefs the father holds regarding his family as measured by the Children,
Feelings, and Beliefs Scales of Hymovich’s Family Perception Inventory (FPI).

Feelings are conceptually deﬁned as the emotions within an individual family
member and elicited within a family system that are separate ﬁom and independent of
rational thought.

Feelings are operationally deﬁned as emotions or emotional perceptions or
attitudes as measured by the FPI, such as “anger,” “conﬁdence,” or “anxiety”.

Belieﬁs are conceptually deﬁned as opinions or convictions, conﬁdence in the

truth or existence of something not immediately susceptible to rigorous proof.

47

Beliefs are operationally deﬁned as truths about things that inﬂuence the way a
person lives as measured by the FPI, for example, “sometimes getting away fi'om
something makes it easier to handle”.

Feelings of Increased Social Support'Needs is conceptually deﬁned as those
needs for emotional support, tangible assistance, cognitive information, and directive
guidance that a father experiences within the family and childrearing context.

Feelings of Increased Social Support Needs is operationally deﬁned as those
needs measured by the Family Resources Scale of Hymovich’s Family Perception
Inventory.

Family Resources is conceptually deﬁned as those supports available to the father
in relationship to his fathering needs.

Family Resources is operationally deﬁned as those measured by the Family
Resources Scale on Hymovich’s Family Perception Inventory (FPI), such as “clergy,”

“doctor,” and “relative or spouse.”

48

 

Legend
H - Two Way Relationship

= Portion of Roy Model
delineated in
Combined Fathering
Model

Control

 

Fathers

 

 

Independent
Variables

 

 

A Child with Chronic

Condition

0 Cancer

0 Cystic Fibrosis
0 Juvenile

Rheumatoid
Arthritis

 

 

 

 

 

' Well Child(ren)

 

 

 

 

 

Dependent
Variables

Family Care
Behaviors
0 Family Care Needs
0 Father Coping
0 Spouse Coping
Increased Energy

”' Needs

0 Father’s Concerns
o Spouse Concerns
Bonding/Adoption of
Fathering Role
0 Feelings
e Beliefs
Feelings of Increased
Social Support Needs
’ Family Resources

Figure 4: Operational Map

49

 

Data Collection Procedures

Permission to carry out the research was received ﬁom the Michigan State
University Committee on Research Involving Human Subjects and the Wayne State
University Human Investigation Committee. Liaison was established with the Nursing
Researcher at Children’s Hospital of Michigan and letters of permission were obtained
ﬁ'om primary physicians in each of the clinics selected for data collection. These
included the Hematology/Oncology Clinic, the Pulmonary Clinic, the Immunology
Clinic, and the General Medical Clinic (see Appendix C).

The fathers of the oncology and cystic ﬁbrosis patients, and the well children
ﬁ'om the pediatric clinic were contacted by mail at their home addresses. Letters of
explanation (see Appendix D) and questionnaires were sent in the fall of 1999. The
fathers of the juvenile rheumatoid arthritis patients also received letters and
questionnaires through their attending physician at this time. The fathers were instructed
that the questionnaires would take about 30 minutes to complete and that it would be
helpful if they could ﬁll them out and return them within the next week. The subjects
were also informed in the letters that the needs of fathers and the ways they view their
needs are frequently different ﬁom others and that there were no wrong answers. The
fathers were requested not to put their names anywhere on the questionnaires so that
conﬁdentiality could be maintained.

The questionnaires were assigned numbers according to the condition of the
respondents’ children, whether they were well, or had cancer, cystic ﬁbrosis, or
rheumatoid arthritis. Subjects were requested to return the questionnaires in the self-

addressed, stamped envelopes provided after they had completed them. F ollow-up

50

 

telephone calls were made to inquire about the status of the questionnaires. If the subject
was still willing to participate, a new questionnaire was sent. A total of two follow-up
calls at two-week intervals was made.

Thirty informational letters and questionnaires were given to the senior attending
physician responsible for the Immunology Clinic. She then distributed them to the
families she determined met the study criteria. Of these thirty, 14 responded and were
included in the study.

Data were collected until 99 subjects meeting the criteria had responded, 48 ﬁom
the fathers of chronic conditions group and 51 ﬁ'om the fathers of well children group.
Data collection took approximately seven months.

Data Anaksis

Descriptive statistics were used to provide information on the ages, incomes,
ethnic backgrounds, and educational levels of the subjects and their spouses. The fathers’
perceptions of their family members’ health was also obtained including the time fathers
spent caring for family health care needs and if resources were available to them for child
care. Means, standard deviations, frequencies, and percentages were calculated for each
scale and scale item related to fathers’ concerns, perceptions of family care needs and
spouses’ needs, his childrearing beliefs and feelings, and his coping behaviors.
Comparative analyses of the responses of the fathers with children with chronic
conditions and fathers of well children were conducted using one tailed t tests. This
method was used because of the anticipated directionality of the results. Although,
strictly speaking, this method is used with a random sample, it was used here with a

convenience sample because of the size of the available population. Data was analyzed

51

using the SPSS Base 10.0 data analysis program. There were 48 fathers of children with
cluonic conditions and 51 fathers of well children included in the study.
According to Cohen (1988) “The power of a statistical test depends upon three
parameters: the signiﬁcance criterion, the reliability of the sample results, and the ‘effect
size’, that is, the degree to which the phenomenon exists” (p. 5). This sample size allows
a power of .8 with an alpha of .05, a beta of .2 and a medium effect size (Cohen).
Limitations of Research

The generalizability of these research ﬁndings is limited to the Midwestern
United States because the heterogeneity of the sample is limited. The majority of
participants were white. The sample is racially skewed related to the choice of chronic
conditions that include cystic ﬁbrosis, a disease occurring in only populations of
Eruopean descent. This, of course, limits the generalizability of the results. The majority
of participants were individuals with higher levels of education. Again, the heterogeneity

of the sample was limited and the ability to generalize the results is limited.

52

CHAPTER IV

RESULTS

This study sought to address 6 research questions. Data related to the ﬁrst two
questions under each research question was analyzed by use of descriptive statistics
including ﬁ'equencies and percentages. These tests were used to describe the frequency
of the responses for the collective 99 fathers as well as separately for the 48 fathers of
children with chronic conditions and the 51 fathers of well children. This was also done
for the ﬁrst four questions under research question six. For the remaining question(s) in
each research question section, which sought to compare the two groups, one tail t tests
were used because of the directionality of the hypotheses. The following are ﬁndings
related to each of these questions.

Research Question 1

1.1 What concerns does the father of a child with a chronic condition identify
regarding his role in the family?

Over 90% of the fathers of children with chronic conditions were concerned about

“talking with or understanding my family”, “making my family comfortable or happy”,

“doing family activities together”, and “my children’s health.” Fathers of children with

chronic conditions were more likely to be concerned in the areas of “talking with or

understanding my family”, “sexual relationship with my spouse”, “making my family

comfortable or lmppy”, “wondering what my family’s future is likely to be”, “having

enough money to meet my family’s needs”, and “my children’s health” More than 50%

53

Table 4: Concerns Scale Items
Affirmative Responses

Including “Little bit”, “Quite a bit”, & “Great deal”

 

 

°/a of % of Fathers of % of Fathers
Total Children with of Well
Concerns (n = 99) Chronic Children
Conditions (11 = 51)
(n = 48)

Extra demands on time 89.9 87.5 92.1
Feeling worn out 81.9 73.0 90.2
Enough ﬁrn & relaxation 88.8 85.4 92.0
Enough time alone with family 80.8 83.4 78.4
Talking with/understanding family 81.9 91.6 72.5
Sexual relationship with spouse 81.6 87.2 76.5
Making family comfortable/happy 93.0 93.8 92.1
Enough attention from family 74.5 78.7 70.6
Getting out with spouse alone 86.9 83.4 90.1
Getting out by myself 68.7 66.7 70.5
Doing family activities together 90.8 95.8 86.3
Enough support from family 60.2 63.8 56.8
Whether taking care of family best 77.7 79.1 76.5
Traveling too far for health care 30.3 45.9 15.7
Enough health insurance for family 42.4 60.5 25.4
Right agencies in community 38.4 56.2 21.6
Wondering about family’s future 78.8 83.4 74.5
Responsibility of caring for family 78.7 81.3 76.4
Enough money to meet family needs 76.8 79.2 74.6
Enough money for extra pleasures 77.8 77.2 78.5
Someone to talk to about worries 62.7 60.5 64.6
Someone to stay with family member 41.9 50.1 34.0
How family members feel about

themselves 75.8 77.1 74.5
Getting enough sleep 77.8 83.4 72.5
Talking to children about their health 65.4 70.2 60.8
Talking to neighbors/ﬁiends about

family 29.6 35.5 24.0
Cost of family’s health care 47.5 66.7 29.4
Recognizing important changes in

health ofany family member 65.7 81.3 51.1
Enough family health information 51.5 64.6 39.2
Family members helping with chores 72.7 70.8 74.5
My spouse’s health 82.8 81.2 84.3
My health 74.7 68.8 80.3
My children’s health 90.9 97.9 84.4

 

54

of the respondents indicated “quite a bit” or a “great deal” of concern in each of these
areas (see Table 4).

The Children Scale was also used to examine fathers’ concerns (See Table 5).
Fathers, as a whole, reported moderate concern about parenting issues, with over 50% in
agreement with “don’t have much time to do things with child(ren)”, it is “hard to punish
my children”, “hard to manage jealousy/ﬁghting”, “hard to set limits”, “hard to get
child(ren) to help with chores”, and “wondering how children think about themselves”.

In addition to the above, over 50% of fathers of children with chronic conditions
reported that it is “hard to talk to children about health”, “hard to know how much to tell
about health”, and “hard to ﬁnd someone to stay with children.”

Table 5: Children Scale Items
Afﬁrmative Responses

 

% of % of Fathers of % of Fathers

 

Concerns about Children Total Children with of Well
(11 = 99) Chronic Children
Conditions (11 = 51)
(n = 48)
Hard to punish my child(ren) 79.8 79.2 80.4
Hard to talk to children about health 38.4 52.1 25.6
Hard to manage jealousy/ﬁghting 53.5 56.3 50.9
Hard to know how much to tell about
health 50.0 56.3 44.0
Try not to talk about health to
child(ren) 19.5 25.1 14.0
Don’t have much time to do things
with child(ren) 61.7 66.7 56.9
Hard to set limits for child(ren) 60.6 62.5 58.9
Family talks about problems easily 83.9 87.5 80.4
Hard to get child(ren) to help with
chores 73.5 79.2 68.0
Hard to ﬁnd someone to stay with
child(ren) 41 .4 56.2 27.5
Wonder how children think of selves 77.8 77.1 78.5
Hard to get out without children 64.3 64.6 64.0

 

55

1.2 What concerns does the father of a well child identify regarding his role in the
family? _.

Over 90% of the fathers in the fathers of well children group identiﬁed “extra
demands on time”, “Feeling worn out”, “enough fun and relaxation”, “making my family
comfortable or happy”, and “getting out alone with my spouse” as concerns. The only
area of“ uite a bit” or a “great deal” of concern to more than 50% of the fathers of well
children was “making my farrrily comfortable or happy.”

There were no areas on the Children Scale in which 50% of the fathers of well
children reported concerns not reported by fathers of children with chronic conditions.
1.3 Do fathers of well children differ from fathers of children with chronic

conditions in their role concerns?

The Ethers of children with chronic conditions group and the fathers of well
children group reported signiﬁcantly different mean scores in the areas of “having to
travel too far for health care,” “having enough insurance to meet Emily health expenses,”
“having the right agencies in the community to provide the care my family needs”,
“wondering whether I will recognize important changes in the health of any of my Emily
members”, “the cost of my family’s health care”, and “my children’s health” (p <.001);
“getting enough information about my family’s health”, (p <.01); “talking with or
understanding my family,” “ﬁnding someone to stay with any of my family members”,
“talking to my children about their health”, “talking with neighbors or friends about my
family”, (p <.05); (see Table 6).

There were no signiﬁcant differences in the childrearing concerns of the two

groups of fathers or in the individual items on the Children Scale. Trends were noted in

56

Table 6: Concerns Scale Items

Differences in Means

 

 

 

Affirmative Responses Total Fathers of Fathers of
(n = 99) Children with Well
Concerns Chronic Children
Conditions (11 = 51)
(II = 48)

T p l_1_l SD l_l_! SD
Talking with/understanding family 2.116 <.05 2.46 .97 2.00 1.18
Enough attention ﬁ'om family 1.840 <.1 2.21 1.20 1.78 1.10
Traveling too far for health care 4.109 <.001 1.33 1.45 .37 .75
Enough health insurance for family 4.180 <.001 1.75 1.45 .65 1.15
Right agencies in community 3.775 <.001 1.54 1.46 .57 1.06
Wondering about Emily’s future 1.801 <.1 2.02 1.21 1.88 .99
Someone to stay with Emily member 2.083 <.05 1.33 1.29 .82 1.14
Getting enough sleep 1.673 <.1 2.27 1.21 1.88 .99
Talking to children about their health 2.440 <.05 1.98 1.33 1.37 1.11
Talking to neighbors/friends about 2.176 <.05 1.06 1.21 .60 .86
family
Cost of family’s health care 5.035 <.001 2.10 1.49 .75
Recognizing important changes in 3.794 <.001 2.21 1.20 1.31
health of any Emily member
Enough Emily health information 3.340 <.01 1.81 1.25 1.00 1.17
My children’s health 4.919 <.001 3.29 .80 2.31 1.16

 

the areas of “having enough attention ﬁ'om my family”, “wondering what my family’s

future is likely to be”, and “getting enough sleep for myself“, (p <.1).

Research Question 2

2.1 What concerns does the father of a child with a chronic condition identify for his

spouse?

The majority of Ethers, overall, reported that they thought their wives had some

concerns, with 74% reporting at least a little concern. About 90% of the fathers of

children with chronic conditions reported that their spouses had at least a “little bit” of

57

Table 7: Spouse Concerns Scale Items
Afﬁrmative Responses

 

 

% of % of Fathers of % of Fathers
Spouse Concerns Total Children with of Well
(11 = 99) Chronic Children
Conditions (11 = 51)
(n = 48)

Extra demands on time 92.8 89.3 96.1
Feeling worn out 97.0 97.9 96.1
Enough fun & relaxation 81.6 76.7 86.3
Enough time alone with you 87.8 85.1 90.2
Talking with/understanding you 82.7 83.0 82.4
Sexual relationship with you 69.4 72.3 66.7
Making Emily comfortable/happy 88.8 85.1 92.1
Enough attention from you 82.6 78.7 86.3
Getting out with you alone 78.6 76.6 80.5
Getting out alone 72.4 72.3 72.6
Doing Emily activities together 85.7 87.3 84.2
Whether taking care of Emily best 78.6 78.7 78.5
Traveling too far for health care 35.4 54.2 17.7
Enough health insurance for Emily 44.4 60.5 29.4
Right agencies in community 33.4 45.8 21.6
Wondering about Emily’s ﬁrture 81.8 83.3 80.4
Responsibility of caring for family 86.0 89.6 82.4
Enough money to meet Emily needs 78.8 79.3 78.4
Enough money for extra pleasures 73.7 72.9 74.5
Someone to talk to about worries 69.7 72.9 66.6
Cost of Emily’s health care 52.6 68.8 37.3
Her own health 70.7 70.9 70.6
Your health 67.3 71.8 63.2
Children’s health 89.0 95.9 82.3
How Emily members feel about

selves 67.7 70.9 64.7

 

58

concern about “extra demands on time”, “feeling worn out”, “the responsibility of caring
for the Emily”, and “children’s health” Over 50% reported their wives having “quite a
bit” to a “great deal” of concern about “feeling worn out”, “making the family

comfortable or happy”, and their “children’s health” (see Table 7).

2.2 What concerns does the father of a well child identify for his spouse?

Ninety percent of the Ethers of well children identiﬁed “extra demands on time”,
“feeling worn out”, “enough time alone with you”, and “making Emily comfortable or
happy” as concerns for their wives. Over 50% reported their wives had “quite a bit” to a

“great deal” of concern about “extra demands on time”, “feeling worn out”, “having

enough fun and relaxation”, “making the family comfortable or happy”, and “whether

taking care of Emily in best way.”

2.3 Do fathers of well children differ from fathers of children with chronic
conditions in the concerns they identify for their spouses?

Table 8: Spouse Concerns Scale Items
Differences in Means

 

Total Fathers of Fathers of
Spouse Concerns (n = 99) Children Well
with Chronic Children
Conditions (11 = 51)

 

 

(n = 48)
T p 11_! SD 1_1_l SD
Traveling too far for health care 4.49 <.001 1.42 1.25 .45 .83
Enough health insurance for Emily 3.54 5.01 1.52 1.20 .71 1.08
Right agencies in community 3.53 3.01 1.23 1.08 .53 .88
Cost of Emily’s health care 3.91 <.001 1.92 1.29 .96 1.13
Her own health 1.67 <.1 2.10 1.15 1.75 .98

 

59

Examination of the individual items, as seen in Table 8, revealed signiﬁcantly
different levels of perceived spouse concerns by the Ethers of children with chronic
conditions and the Ethers of well children. Fathers of children with chronic conditions
perceived their spouses to have greater concerns regarding “having to travel too far for
health care”, “cost of Emily’s health care” (p <.001); “having enough insurance to meet
health care”, and “having the right agencies in the community to provide the care my
family needs”, (5 >01 ).

There is a trend toward signiﬁcance between the means of the Ethers of children
with chronic conditions respondents perceived concern of their wives over their “own
health” (p <. 1) in comparison to the Ethers of well children.

Research Question 3
3.1 What family care needs does the father of a child with a chronic condition
identify?

Overall, fathers indicated a low level of need about Emily care issues with 28.4%
indicating “needed a little bit” and an additional 6% indicating “needed a lot”. Thirty-
one percent of Ethers of children with chronic conditions reported a little bit of need with
another six percent indicating a lot. Table 9 reports the individual items on the Emily
care needs scale. The items of greatest need were “dental needs” with 52.5% of the
Ethers responding afﬁrmatively.

Fifty percent of the Ethers of children with chronic conditions cited “dental
needs.” Greater than 50% reported “health”, as another Emily care need.

3.2 What family care needs does the father of well a child identify?

Fifty-ﬁve percent of the Ethers in the Ethers of well children group also reported
“dental needs” as a Emily need. Twenty seven percent of fathers of well children
responded that they had a little bit of need and six percent, a lot of need.

Table 9: Family Care Needs Scale Items
Afﬁrmative Responses

 

% of % of Fathers of % of Fathers

 

Family Care Needs Total Children with of Well

(11 = 99) Chronic Children

Conditions (11 = 51)

(II = 48)

Physical care 36.4 39.6 33.4
Diet or nutrition 39.4 43.8 35.3
Sleep habits 25.2 29.2 21.6
Care of minor illnesses 42.9 40.5 45.1
Dental needs 52.5 50.0 54.9
Play or recreation activities 31.3 33.4 29.4
Managing behavior 39.4 33.3 45.1
School or learning experiences 44.9 45.9 44.0
Physical development 26.5 31.3 22.0
Social development 29.3 33.4 25.5
Emotional development 33 .6 31.2 36.0
Intellectual development 36.4 33.4 39.2
Health 41.4 52.1 31.4
Knowing when to see the doctor 36.7 41.7 32.0
Money 36.3 37.5 35.3
Food 16.5 19.6 13.7
Housing 17.1 20.8 13.7

 

3.3 Do fathers of well children differ from fathers of children with chronic
conditions in their identification of family care needs?
Means of 1.7603 and 1.6989 were compared using an independent samples t test
to determine if there were signiﬁcant differences at the .05 level. Overall there was no
signiﬁcant difference in the means of the two groups. In examining the individual items

on the scale, no signiﬁcant differences were found.

61

Research Question 4
4.1 What beliefs regarding child raising does the father of a child with a chronic

condition identify?
In looking at the individual items, shown in Table 10, 41% of the Ethers’ of
children with chronic conditions responses fell within the “agree” category with ten
percent falling within the “strongly agree” area.

Table 10: Beliefs Scale Items
Affirmative Responses

 

% of % of Fathers of ’/a of Fathers

 

Beliefs Total Children with of Well
(11 = 99) Chronic Children
Conditions (11 = 51)
(II = 48)

Family usually has control over
things that happen 76.8 66.7 86.3
Parents need to take care of own
needs ﬁrst 24.2 22.9 25.5
Parents need to get out to relieve _
strain of child care 87.9 85.4 90.2
Usually better to talk about one’s
feelings with others 74.5 81.3 68.0
Trying to forget makes things easier 61.7 58.4 64.7
One day at a time is usually better
than long term planning 38.8 47.9 30.0
Getting away makes things easier 31.3 33.4 29.5
People should try to handle problems
themselves 25.2 20.9 29.4
Not much Emily can do about health

85.8 83.4 88.2
Sometimes family is a nuisance 4.0 4.2 3.9
Parents need someone to talk to about
raising children 72.7 62.5 82.4

 

4.2 What beliefs regarding child raising does the father of a well child identify?

Of the fathers of well children, 43% responded in the “agree” category, and 11%

strongly agreed.

62

 

4.2 Do fathers of well children differ from fathers of children with chronic
conditions in their beliefs?

Means of 3.0758 and 3.0483 were compared using a one tailed t test to determine
if there were signiﬁcant differences at the .05 level. There was one signiﬁcant difference
in the means of the two groups; “my family usually has control over things that happen to
it” (p <.02). There were some other interesting differences between the two groups of
fathers. Trends were apparent in the means of the affirmative responses of the Ethers of
children with chronic conditions and the Ethers of well children to “it is usually better to
talk about one’s feelings with others”, (p <.094); and “taking one day at a time is usually
better than long term plans” (p = .057).

Table 11: Beliefs Scale Items
Differences in Means

 

Total Fathers of Fathers of
Beliefs (n = 99) Children with Well
Chronic Children
Conditions (11 = 51)
(n = 48) t

r P M so .1! so

 

 

Family usually has control over 2.379 <.020 2.46 .92 2.06 .73

things that happen

Usually better to talk about one’s -l.692 <.094 2.00 .83 2.32 1.04
feelings with others

One day at a time is usually better -1.928 <.057 2.85 1.17 3.28 1.01
than lorg term planning

 

Research Question 5
5.1 What feelings regarding child raising does the father of a child with a chronic

condition identify?
Overall, on the feelings scale, Ethers reported their feelings, positive and

negative. In looking at the groups separately, there was no signiﬁcant difference in their

63

mean scores, fathers of children with chronic conditions and fathers of well children.
This was also true of the individual items as seen in Table 12. Eighty percent or more of
the Ethers reported that they “often” to “very often” felt “conﬁdent”, “good”, “guilty”,
“happy”, “helpless”, “hopeﬁrl”, “in control”, “resentful”, “sad”, and “satisfied.” They
denied feeling “defeated” and “depressed.”

Over 50% of the Ethers in the fathers of children with chronic conditions group
reported “often” to “very often” feeling “conﬁdent”, “content”, “good”, “happy”,
“hopeful”, “in control”, “pleased”, and “satisﬁed”.

5.2 What feelings regarding child raising does the father of a well child identify?

Over 50% of the Ethers of well children reported “often” to “very often” feeling
“conﬁdent”, “content”, “good”, “happy”, “hopeful”, “in control”, “lucky”, ‘pleased”, and

“satisfied.”

Table 12: Feelings Scale Items
Afﬁrmative Responses

 

 

% of “/1. of Fathers of “/a of Fathers
Feelings Total Children with of Well
(11 == 99) Chronic Children
Conditions (11 == 51)
(n = 48)
Angry 39.4 41.7 37.2
Anxious 44.5 43.7 45. 1
Conﬁdent 80.9 83.3 78.4
Content 67.7 60.9 74.0
Defeated 7.1 10.4 4.0
Depressed 12.1 14.6 9.8
Disappointed 26.3 29.2 23.5
Frustrated 44.4 45.9 43.2
Good 87.9 85.5 90.2
Guilty 90.9 93.8 88.3
Happy 88.9 83.3 94.1
Helpless 86.9 87.6 86.2
Hopeful 88.9 89.6 88.2
In Control 82.9 79.2 86.3
Lucky 48.5 41.6 54.9
Overwhelmed 55.1 57.4 52.9
Pleased 76.8 66.7 86.3
Resentful 91.9 95.9 88.2
Sad 85.8 87.5 84.3
Satisﬁed 81.8 79.2 84.3
Uneasy 69.7 72.9 66.6

 

65

 

5.3 Do fathers of well children differ from fathers of children with chronic
conditions in their feelings?
Means of 1.7553 and 1.7663 were compared using a one tailed t test to determine
if there were signiﬁcant differences at the .05 level. Overall, there was no signiﬁcant
difference in the feelings of the respondents of the two groups. Of interest, however, is

the difference in the means of the Ethers’ responses to feeling “lucky” (p < .075) (see

 

 

 

Table 13).
Table 13: Feelings Scale Items
Differences in Means
Total Fathers of Fathers of
Feelings (n = 99) Children with Well
Chronic Children
Conditions (11 = 51)
(n = 48)
T P M SD 91 SD
Lucky -1.801 <.075 1.15 1.01 1.47 .76

 

Research Question 6

6.1 What coping strategies does the father of a child with a chronic condition use?
Fathers, in general, reported use of many of the coping behaviors and the vast
majority (81%) found most of them helpful. Table 14 indicates the responses to the
individual items in the coping scale. Among the coping behaviors used most frequently,
over 80% of respondents reported “looking at options”, “asking questions”, “trying to
ﬁgure out what to do”, “trying to relax”, “Weighing choices”, “getting information”, and
“trying to change things.” Over 50% of the Ethers of children with chronic conditions

indicated positive behaviors.

(g... e isms—"rin-m-ﬁl

Table 14: Coping Scale Items

Affirmative Responses

 

 

 

% of Total % of Fathers of °/a of Fathers of
Coping (n = 99) Children with Well Children
Chronic (n = 51)
Conditions
(I = 48)
How How How How How How
often helpful often helpful often helpful

Cry 14 88 22 82 8 100
Busy myself 63 91 63 92 63 90
Talk with someone 64 99 59 97 69 100
Ignore/try to forget 34 57 22 48 45 64
Look at options 94 100 93 100 94 100
Get away for awhile 36 90 28 94 43 87
Hide feelings 57 59 59 58 55 59
Change expectations 53 88 46 85 60 91
Blame someone 25 33 15 44 34 26
Yell/scream/slam

doors 39 46 44 44 34 49
Exercise 61 99 56 100 66 98
Ask for help 54 99 56 97 51 100
Take alcohol/drugs 18 60 13 50 22 67
Pray 70 97 77 94 63 100
Blame myself 37 46 32 41 42 50
Ask questions 82 100 81 100 82 100
Get advise 68 99 68 100 69 98
Try to ﬁgure out 95 99 94 100 96 98
Sleep 52 87 53 86 50 88
Find help 56 97 60 97 53 97
Smoke 12 59 13 50 12 67
Laugh/joke about it 79 93 73 97 84 90
Bat 40 53 50 58 31 46
Try to relax 80 96 80 95 80 98
Read about problem 61 95 62 97 59 93
Wish problem away 52 26 56 21 47 30
Weigh choices 90 100 85 100 94 100
Get information 80 100 87 100 73 100
Try to change things 84 95 81 95 86 96

 

67

Another area that was examined was what informational resources they used
related to Emily problems or needs. Over 50% of the Ethers of children with chronic
conditions reported using doctors, ﬁiends, nurses, relatives or spouses, and
newspapers/magazines as sources of information (see Table 15).

Table 15: Information Resources Scale Items
Affirmative Responses

 

% of % of Fathers of % of Fathers

 

Information Resources Total Children with of Well
(11 = 99) Chronic Children
Conditions (11 = 51)
(n = 48)

Clergy 36.4 45.8 27.5
Doctor 81.8 87.5 76.5
Friend 80.8 79.2 82.4
Nurse 37.4 54.2 21.6
Teacher 32.3 31.3 33.3
Relatives or spouse 80.8 79.2 82.4
Pharmacist 18.2 25.0 1 1.8
Other parent 38.4 27.1 49.0
Social worker 16.2 29.2 3.9
Nutritionist 13.1 22.9 3.9
Therapist 19.2 25.0 13.7
Library 22.2 22.9 21.6
Newspaper/magazines 44.4 52.1 37.3
Support group 10.1 18.8 2.0
Community agency 6.1 8.3 3.9
Internet 10.1 12.5 7.8

 

6.2 How helpful does the father of a child with a chronic condition report these
coping strategies to be?
All of these behaviors were reported by high proportions of the respondents as
helpful as well as “crying”, “busying myself with other things”, “talking with someone
about feelings ”, “getting away for a while”, “changing my expectations”, “exercise”,

“asking for help”, “praying”, “getting advise of others”, “sleeping”, “ﬁnding help”,

68

 

“trying to laugh or joke about it”, and “reading about the problem” although used by
fewer respondents. In examining the fathers’ of children with chronic conditions, over
50% indicated they found the positive behaviors they used helpful.

6.3 What coping strategies does the father of a well child use?

Greater than 50% of the fathers of well children reported using “busying myself’,
“talking to someone”, “looking at options”, “hiding feelings”, “changing expectations”,
“exercise”, “asking for help”, “prayer”, “asking questions”, “getting advise”, “trying to
ﬁgure out what to do”, “ﬁnding help”, “laughing or joking about it”, “trying to relax”,
“reading about the problem”, “weighing choices”, “getting information”, and “trying to
change things.”

Over 50% of fathers of well children utilized doctors, friends, and relatives or
spouses when in need of information. Another 49% relied on other parents as resources.
6.4 How helpful does the father of a well child report these coping strategies to be?

Fifty-nine to one hundred percent of the Ethers in the Ethers of well children group
found these coping strategies helpful
6.5 Do fathers of well children diﬂ’er from fathers of children with chronic
conditions in the use of various coping strategies?

Fathers of children with chronic conditions were signiﬁcantly more likely to use
“crying” (p =.007), than Ethers of well children, while fathers of well children were
more likely to “ignore or try to forget” (p =.023) and “blame someone” (p =.004) than
fathers of children with chronic conditions. Trends toward increased use of ‘praying”

(p =.083) was evident in the fathers of children with chronic conditions group over the

fathers of well children group. However, “trying to ﬁgure out what to do” (p =.07) and

69

 

“changing my expectations” (p =.059) was utilized more by the fathers of well children *

than the Ethers of children with chronic conditions (see Table 16)..

Table 16: Coping Scale Items
Diﬂ'erences in Means

 

 

 

 

Total Fathers of Fathers of Well
Coping (n = 99) Children with Children
Chronic (n = 51)
Conditions
(11 = 48)
T p M SD li_! SD
Cry 2.788 .007 .76 .79 .35 .63
Ignore/try to forget -2.319 .023 .85 .82 1.25 .91
Change expectations -1.916 .059 1.52 .76 1.20 .88
Blame someone -2.995 .004 .61 .80 1.16 1.00
Pray 1.752 .083 1.96 1.02 1.56 1.14
Try to ﬁgure out -1.832 .070 2.44 .74 2.68 .55

 

Means of .39 and .30 were compared using a one tailed t test to determine if there

were signiﬁcant differences at the .05 level. There was a signiﬁcant difference in means

overall with the mean of Ethers of children with chronic conditions greater than the mean

of Ethers of well children. In examining the individual sources, the Ethers in the Ethers

Table 17: Information Resources

Differences in Means

 

 

 

Total Fathers of Fathers of Well
Information (11 = 99) Children with Children
Resources Chronic (n = 51)

Conditions
(11 = 48)
t P M SD #1! SD

Nru'se 3.502 <.002 .54 .50 .22 .42
Support group 2.788 <.010 .19 .39 1.96E-02 .14
Other parent -2.287 <.050 .27 .45 .49 .50
Social worker 3.5 18 <.002 .29 .46 3 .92E-02 .20
Nutritionist 2.828 <.010 .23 .42 3.92E-02 .20

 

70

 

of children with chronic conditions included the nurse (p <.002), social worker (p <.002);

nutritionist and support group (p <01); and other parent (p <.05) (see Table 17).
6.6 Do fathers of well children differ from fathers of children with chronic
conditions in the helpfulness of various coping strategies?

Fathers of children with chronic conditions were more likely to ﬁnd “trying to
laugh or joke about it” (p =.O9) more helpful than Ethers of well children. However,
fathers of well children found “crying” (p =.058) more helpful . A third or less of the
respondents found “blaming someone” and “wishing problem would go away” helpful.

Table 18: Coping Helpfulness Scale Items
Differences in Means

 

 

 

Total Fathers of Fathers of Well
Coping (n = 99) Children with Children
Chronic (n = 51)
Conditions
(I! = 48)
T P _11_! SD M SD
Cry -1.997 .058 1.1 1 .74 1.62 .77
Laugh/joke about it 1.715 .090 1.69 .77 1.40 .84

 

Because the Ethers’ coping behaviors impact the coping abilities of the entire
family, the subjects were also asked to answer questions about how their Emilies were
managing problems, feelings, and stress (see Table 19). In the Ethers of children with
chronic conditions group, 20 (41.7%) of the Ethers felt that the Emily was not handling
problems well, with another 22 (45.8%) feeling that the family was managing problems
fairly well. No Ethers in this group rated problem management in the “very well”

category. In the Ethers of well children group, the majority of Ethers rated their Emily

71

L' In r's

Table 19. Family Coping

 

 

 

 

 

 

 

 

 

Family Management of Problems % of Fathers of Children % of Fathers of
with Chronic Conditions Well Children
Not Well 41.7 5.9
Fairly Well 45.8 27.5
Well 12.5 45.1
Very Well 21.6
Ability to Change Things when there are Problems
Not very often 43.8 16.0
Almost always 52.1 74.0
Always 4.2 , 10.0
Family Management of Feelings and Concerns
Not Well 2.1 5.9
Fairly Well 50.0 37.3
Well 41.7 41.2
Very Well 6.3 15.7
Satisfaction with Family Management of Stresses
Dissatisfied 18.8 19.6
Satisfied 79.2 74.5
Very Satisﬁed 2.1 5.9

 

 

 

72

 

problem management as “Eirly well” (14, 27.5%) to “well” (23, 45.1%) with an
additional 11 (21.6%) stating that management was indeed, very good.

Twenty-one Ethers of children with chronic conditions (43.8%) expressed that
they were able to change things infrequently when there were problems. However,
another 25 (52.1%) stated that they almost always were able to change things when
problems arose. Thirty-seven (74%) Ethers of well children rated their ability to change
things when there were problems at “almost always”.

Of the Ethers of children with chronic conditions, 91.7% (44) rated their families’
management of feelings and concerns as “Eth well” (24, 50%) to “well” (20, 41.7%).
In the fathers of well children group the responses were very similar with 19 (37.3%)

“fairly well” and 21 (41.2%) “well”. The majority of Ethers of children with chronic
conditions (38, 79.2%) and Ethers of well children (38, 74.5%) were satisﬁed with their
families’ rmnagement of stress.

Means of 1.60 and 1.94 were compared using a one tailed t test to determine if
there were signiﬁcant differences at the .05 level. There was only one signiﬁcant
difference with the Ethers in the Ethers of children with chronic conditions feeling their
family could less often change things when there was a problem (p =.003), than Ethers in
the Ethers of well children group.

This study shows signiﬁcant ﬁndings in the areas of Ethers’ concerns of their
own and perceptions of their wives concerns. Other signiﬁcant ﬁndings included one
individual childrearing belief, “family usually has control over things that happen" and

individual coping strategies including the use of various informational resources.

73

Chapter V

DISCUSSION

This discussion will begin with a review of the analysis of the demographic data.
In addition, six research questions and seven hypotheses were brought forward and will
be discussed in relationship to the analytical ﬁndings. The ﬁndings will be further
discussed in conjunction with the theoretical framework used and the implications for
practice in the clinical area. Limitations, implications for ﬁrrther study, and conclusions
will be included.
Findings of Dempgraphic Data

The demographics for the two groups of fathers were similar. Both groups had
mean ages of 30 to 39 years and annual Emily incomes between $40, 000 and $49, 000
Ring—an income of the group of thefsﬁoﬂf children with chronic conditions Was closer
to $40,000 and signiﬁcantly less than the group of fathers of well children with an
income mean close to $49,000. Both groups of Ethers were college educated, although
many did not complete their degrees. The ethnic backgrounds of the groups were also
very similar with 80% white, and nearly 10% black. While the Ethers in both groups
rated their own health as good, the Ethers of children with chronic conditions reported
their wives’ health to be signiﬁcantly poorer than the health of the wives of the Ethers of
well children. As expected, this was also true of the reported health of the children.

There were signiﬁcant differences in the demographics of the wives. The mothers of the

well children had more formal education, worked outside the home, and had better health

74

..r sari-inns. -

They were very similar in age and ethnic origin. There was a signiﬁcant difference in
family resources including the availability of someone to care for a Emily member for a
week, and the ability of the family to change things when there were problems. Fathers
of well children reported greater Emily resources than those reported by fathers of
children with chronic conditions.
Findings of the Research Instrument

Reliability analysis revealed study alphas comparable to the author’s alphas on
most scales (see Table 21). The reliability was generally high with the exception of the
beliefs scale (author’s a = .59, study or = .35). Dr. Hymovich noted in a personal
communication (1999) that this scale should be used with caution because of its lower
reliability. There was a large discrepancy in the reliability of the feelings scale between
the author’s analysis and this study’s analysis (author’s a = .85, study a = .40). The
alpha increased to .84 (M = 31.40, S. D. = 6.80, n = 5, and n of variables = 25) with the
exclusion of the item “smoking”. The author’s guidelines for recoding of the beliefs and
feelings scales were followed with more positive responses indicating more positive
beliefs and feelings overall. Two additional scales were compiled from the existing
questions. These were the Health Needs Scale with an alpha of .87 and the Information
Resources Scale, alpha .69. These scales were compiled to look at possible differences in

the health concerns and acceptable resources between the two groups of Ethers.

75

Table 20. Means, Standard Deviations & Reliability

 

 

No. of Author’s Study Author’s Study Author’s Study
SCALE Study Mean*(n) Mean (11) S.D. S.D. Alpha" Alpha
Items
Concerns 33 59.62 (45) 63.12 (94) 24.88 22.61 .95 .93
Family 17 26.06 (47) 28.78 (92) 10.28 12.35 .89 .91
Needs
Beliefs 11 33.33 (48) 30.80 (97) 2.93 3.75 .59 .35
Feelings 21 31.82 (44) 36.26 (95) 4.88 4.78 .75 .61
(unrecoded)
Coping 29 50.07 (42) 43.44 (82) 9.36 9.86 80 .79
Coping- 29 36.60 (5) 13.33 (3) 10.16 2.89 .85 .40
Help
Children 12 28.96 (95) 12.21 11.65 .80 .83
Spouse 25 45.19 (47) 50.86 (94) 17.81 15.05 .93 .91
Concerns
Information 17 - 5.82 (99) - 2.54 - .69
Resources

 

Hymovich (personal communication, 1999)

76

-— _-Y'"_"-.m

Pu1_'po_se of Study
The purpose of this study was to identify and compare the concerns, beliefs,

feelings, coping strategies, concerns about children, perceptions of spouse concerns and
spouse coping behaviors of Ethers of children with chronic conditions and Ethers of well
children. The sample consisted of 99 fathers of children in the service area of a large
metropolitan medical center. The 48 Ethers of children with chronic conditions and the
51 Ethers of well children who participated each completed the Hymovich Family
Perception Inventory (FPI) anonymously.
Finding of Study Data

The primary ﬁnding of this study was that there were differences between fathers
of children with chronic conditions and fathers of well children on selected aspects of
perception measured by the FPI. The areas of signiﬁcant difference between the Ethers
were that of concerns regarding function within the Emily including informational
resources, perceived and spousal concerns. The majority of fathers (70%) reported they
had concerns. However, over 50% of the Ethers of children with chronic conditions
expressed concern about talking with or understanding their Emilies, sexual relations
with their wives, making their families happy or comfortable, wondering about their
families’ ﬁrtures, and concern for their children’s health. The one concern reported by
the majority of Ethers of well children was about making their Emilies comfortable or
happy.

Fathers of children with chronic conditions were signiﬁcantly more concerned
than Ethers of well children about health related matters. These included traveling too

far for health care, having enough health insurance, having the right agencies in the

77

community to provide needed family care, talking about health to their children and about
their Emilies with neighbors and ﬁiends, recognizing important changes in the health of
Emily members, getting enough information about their Emilies’ health, their children’s
health, and the cost of health care. In addition, these Ethers were signiﬁcantly more
concerned about talking with or understanding their Emilies and ﬁnding someone to stay
with Emily members. There were no areas of concern for Ethers of well children that
were reported as signiﬁcantly greater than those of the fathers of children with chronic
conditions. This supports hypothesis one, which states that Ethers of children with
chronic conditions will have signiﬁcantly greater concerns about their role than Ethers of
well children as measured on the FPI.

It is not unexpected that the areas of greater concern for Ethers of children with
chronic conditions involve Emily health, comfort, and happiness, since these are factors
that would impact everyday life much more ﬁ'equently and intensely than for Emilies
with well children. It also supports the literature, in the contention that the areas of
concern for parents are the same with both children who are well and those with chronic
conditions in items, but different in quantity.

Fifty-nine percent of the fathers, overall, had concerns regarding parenting their
children and 36.4% had perceived Emily care needs. There were no signiﬁcant
differences in the concerns that Ethers had about their children. However, there are some
interesting parallels related to the individual items and their reporting. Over 60% of all
the Ethers reported ﬁnding it hard to punish their children, hard to set limits, hard to get
their children to help with chores, and hard to get out of the house without their children.

They also had concern about not having much time to do things with their children and

78

wondered what their children think about themselves. There was a general consensus
among the Ethers that their Emilies talked easily about problems. Fathers of children
with chronic conditions additionally found it hard to ﬁnd someone to stay with the
children. While 60% of the fathers of well children were concerned with difficulty
punishing their children, wondering what the children think about themselves, and
ﬁnding it hard to get out of the house without the children.

In looking at these results, it becomes clear that the difference in concerns is
primarily related to health issues. Even though only the concerns and spouse concerns
scale means were signiﬁcantly different between the two groups of Ethers, it is of
interest to look at the individual items in the scales in relationship to the two groups. The
fathers of children with chronic conditions expressed concern about not having time to
spend with their children, having a hard time setting limits, having a hard time getting
children to help with chores, and having a hard time ﬁnding someone to stay with their
children. All of these items can relate to children both well and with chronic conditions.
However, having difficulty ﬁnding someone to stay with a Emily member was
signiﬁcantly greater for Ethers of children with chronic conditions than Ethers of well
children. This was also true demographically.

Over 60% of the Ethers of children with chronic conditions expressed concerns
about traveling too far for health care, the cost of health care, recognizing changes in
family members’ health, getting enough information about Emily’s health, their
children’s health, having enough health insurance, and having the right agencies in the
community. Because this was not a concern reported by the majority of Ethers of well

children, one is led to believe that these issues are related to the Chronicity of the child’s

79

 

 

condition. With the health related concerns removed the Ethers’ parenting needs were
comparable in both groups.

Perceived spouse concerns were reported by nearly three-quarters of the Ethers
(74%). Over 50% of the Ethers, overall, felt their wives were concerned “quite a bit”
about feeling worn out and making the Emily happy or comfortable. The Ethers of
children with chronic conditions also reported their perceptions that their children’s

health was also an area of “quite a bit” to a “great deal” of concern for their wives.

Fathers of well children reported their perceptions that their wives had concerns about the

extra demands on their time and whether they were taking care of the family in the best
way. The Ethers of children with chronic conditions perceived their wives to be
signiﬁcantly more concerned about traveling too far for health care, having enough
insurance, having the right agencies in the community to provide for family needs, and
the cost of health care than was perceived by the fathers of well children. All of these
concerns are health related and instrumental in nature. Fathers of children with chronic
conditions perceived signiﬁcantly greater spousal concerns than Ethers of well children
as measured on the FPI, which supports hypothesis two.

The majority of Ethers of children with chronic conditions perceived their wives
to have fewer concerns, than they themselves had. The mutual concerns were making
their Emily happy or comfortable and their children’s health. This was also true of the
signiﬁcantly greater concerns that Ethers of children with chronic conditions had.
Fathers in this group perceived that both they and their wives were concerned about
traveling too far for health care, having enough health insurance, having the right

agencies in the community to provide for the family’s needs, and the cost of health care.

80

 

The Ethers also perceived fewer signiﬁcant differences in the concerns of mothers of
children with chronic conditions and the mothers of well children. Whereas, Ethers of
well children perceived their wives to have more concerns than both themselves and the
mothers of children with chronic conditions, Ethers of children with chronic conditions
perceived themselves having more concerns than their wives.

Mothers of well children, the vast majority of whom were working outside the
home, might reasonably be concerned about the extra demands on their time that the
extracurricular activities of their children and the balancing of Emily and work
obligations creates. Also, mothers who work outside the home might worry about
whether this infringes on their ability to take care of their families in the best way.

Not only did all the Ethers have “quite a bit” to a “great deal” of concern about
making their Emilies happy, wondering about their Emilies’ futures, having enough
money, and their children’s health, but fathers of children with chronic conditions also
were concerned about talking with their families about health and their sexual
relationships with their wives. The majority of fathers of well children, on the other
hand, were only concerned quite a bit to a great deal about making their Emilies happy or
comfortable.

The Emily care needs of concern to the Ethers, overall and within each group,
were dental needs. In addition, Ethers of children with chronic conditions expressed
informational needs regarding their Emily’s health. These needs, however, were
expressed by less than 40% of the Ethers.

Childrearing beliefs were very similar in both groups with no signiﬁcant

difference in means, overall. Fifty-three percent of the Ethers agreed with the

81

 

childrearing beliefs put forth in the questionnaire. Fathers of children with chronic
conditions means were greater than Ethers of well children in the areas of “it is usually
better to talk about one’s feelings with others” and “taking one day at a time is usually
better than making long term plans.” Fathers of well children reported that their Emily
usually has control over things that happen to it to a greater extent than Ethers of children
with chronic conditions. The stress of diagnosis, treatment, and uncertain long-term
prognosis are evident in the need to talk about one’s feelings, along with the diminished
feelings of control over events. The need to take one day at a time also coincides with

/,

)he uncertainty of the child’s condition day to day. However, due to the poor reliability

// of the scale, these results must be viewed with caution.

 

 

 

jg It is interesting to note that over 70% of the Ethers, overall and in each group,

VLEMm—%ﬁ ~ W. ......._ -...-.. ._
reported that sometimes parents need to get out of the house to relieve the strain of child
care and that there is not much their Emilies could do about their health. With the
emphasis on preventative health care and healthy living habits, the latter is a surprising
ﬁnding. Because of the lack of signiﬁcant differences in the means of the two groups for
the overall scale and its poor reliability, hypothesis three, Ethers of children with chronic
conditions will have signiﬁcantly less positive beliefs than Ethers of well children
regarding child rearing as measured on the FPI, was not supported

Hypothesis four, Ethers of children with chronic conditions will have

signiﬁcamly less positive feelings than Ethers of well children as measured on the FPI,
was not supported. There was no signiﬁcant difference in the means of the overall scale

and only one meaningful difference in means on one item. Fathers of well children

reported a higher incidence of feeling “lucky” than fathers of children with chronic

82

‘——‘e°'-=r-.-'-.«—:

Rf

conditions. Over 80% of all the Ethers reported feeling conﬁdent, good, guilty, happy,
helpless, hopeful, in control, resentﬁrl, sad, and satisﬁed within the last three months.
Over 80% of fathers of children with chronic conditions shared these feelings with the
exception of feeling in control or satisﬁed. Fathers in the Ethers of well children group
agreed except they felt pleased but not conﬁdent in over 80% of the cases.

Fathers reported utilizing 58% of the coping behaviors in the coping scale during
the last three months. There was no signiﬁcant difference in the means for the two
groups. In looking at the individual items there was also very little difference in the
behaviors employed and their helpfulness. Therefore, hypotheses ﬁve and six were not
supported. These hypotheses stated that Ethers of children with chronic conditions will
use coping strategies signiﬁcantly more often than Ethers of well children as measured
on the FPI and that Ethers of children with chronic conditions will ﬁnd their coping
strategies signiﬁcantly less helpful when they have problems than Ethers with well
children as measured on the FPI.

\ Although there were no signiﬁcant differences in coping behaviors, there were
signiﬁcefnt/ differences in what somces the two groups used when accessing information.
Again, health issues impacted resoru‘ce uses. There were signiﬁcant differences in the
means of the two groups, the means of Ethers of children with chronic conditions greater
than the means of Ethers of well children. Over 50% of fathers of children with chronic
conditions utilized doctors, nurses, friends, relatives or spouses, and newspapers and
magazines to access desired information. Fathers of well children utilized doctors,

friends, relatives or spouses, and other parents. Although the means of Ethers of children

with chronic conditions were signiﬁcantly higher in the use of the nurse, social worker,

83

 

nutritionist, and support group, only the nurse was used by greater than 50% of the
fathers. Other parents were used signiﬁcantly more by Ethers of well children.
Conceptual Framework

The theoretical ﬁamework, the combined Bronfenbrenner/Roy model, works well
as the grounding point for this study. The microsystem, of which the Ether and child are
a dyad, is continuously changing and evolving. The child is born with certain parenting
needs that he/she exhibits through his/her behavior patterns. These needs change as the
child grows and develops, the father’s comfort level grows with his increasing knowledge
and ability to provide for the child’s needs. However, when a child has a chronic
condition there are environmental changes the Ethers experience. These changes are
health focused and they demand changes in the Ethers’ coping, physiologic, and
psychological responses to these stimuli. This results in changes in the proximal
processes within the family microsystem. Those concerns that are signiﬁcantly different
from Ethers with well children include changes in Emily care behaviors (ﬁnding
someone to stay with a Emily member, talking to the family about health, having the
right agencies in the community to meet the Emily’s needs, recognizing changes in
family members’ health, getting enough information about the Emily’s health, and the
children’s health), increased energy and ﬁnancial needs (traveling too far for health care,
having enough health insurance, the cost of health care), bonding (talking with or
understanding the Emily), and adopting the Ethering role (talking to neighbors and
friends about the Emily). These concerns, when acted upon will stimulate proximal
processes that are adaptive or ineffective. Information gathering sources for over 50% of

all the Ethers include doctors, friends, and relatives or their spouses. For over 50% of

84

Ethers of children with chronic conditions, this list of resources expands to include
nurses, newspapers and magazines. With the anticipatory guidance of health care
professionals, the input of their informal social support networks, and print media, molar
activities will increase the effective adaptation of these Ethers to their changing Ethering
role. With the anticipated increased feelings of control and pleasure in their role
accomplishments, Ethers may have increased feelings of self-esteem, competence, and
accomplishment, leading to ﬁxture positive Ethering behaviors and fostering resilience.
These results then might be extended to increasingly positive relationships in the
exosystem and the macrosystem

Review of the Literature

A bit higher in severity than was reported by Jackson (1996) as mild, moderate,
and severe conditions, children’s health was reported as poor to fair by 17% of the Ethers
of children with chronic conditions, good by 37%, and very good to excellent by 46%.
The cost of health care in terms of travel distances, child caregivers for more than a day,
having enough insurance, and out of pocket health care expenses are signiﬁcantly greater
concerns for parents of children with chronic conditions than those of well children. This
agrees with the ﬁndings of Shepard and Mahon (1996).

Lamb (1997) found a high incidence of marital discord in his study of Emilies
with children with chronic conditions that did not appear to be present in the current
study with about 90% of all the Ethers (both Ethers of children with chronic conditions
and fathers of well children) rating their Emilies as close and satisﬁed with their Emily

relationships. Nor were Shepard and Mahon’s (1996) ﬁndings supported in that Ethers

85

 

did not report a signiﬁcantly greater need for information about their children’s growth
and development, managing their behavior, diet, or care of minor illnesses.

There were signiﬁcant differences between the two groups of responses with
fathers reporting greater concern about feeling worn out, and having enough money,
which is in agreement with Shepard and Mahon (1996). Wondering about their Emily’s
future is in agreement with both Shepard and Mahon’s ﬁndings and Cayse’s (1994)
report.

The current study supported that fathers of children with chronic conditions work
toward understanding and managing the condition (concern for their children’s health,
getting enough information about their Emilies’ health, and recognizing important
changes in the health of family members), helping the child understand and deal with the
condition (talking about health to their children, having the right agencies in the
community), and working toward meeting the needs of other Emily members (talking
with or understanding their Emilies, ﬁnding someone to stay with Emily members) as
reported by Hymovich (1976).

The powerlessness reported by Enscar, et a1 (1997) was demonstrated in this
study by the signiﬁcantly lesser feelings of control by the Ethers of children with chronic
conditions than the Ethers of well children. This is also supportive of Sabbeth’s (1984)
ﬁndings that fathers had special difficulty dealing with a lack of control imposed by the
illness leading to feelings of helplessness.

All the segments of the Ethering role showed evidence of the impact of the
child’s chronic condition. These include the role as protector (feelings of events being

out of Emily control), communicator (having enough information about my family’s

86

E ’ a “’ 'M."'-H.! Q"

 

health, what to tell friends and neighbors about my Emily, talking with or understanding
my family), and breadwinner (having enough money for health care costs). This also
supports Sterken (1996) in his report of Ethers feeling a lack of ﬁrst hand information
regarding their child’s treatment and follow-up care and the need to regularly voice their
concerns and feel their opinions and questions are valued (better to talk about feelings,
ask questions, and get help).

These ﬁndings support Belsky’s (1984) contention that a Ether’s social system
enhances fathering behavior by providing emotional support, instrumental assistance, and
guidelines for social expectations. That these needs are greater in Ethers of children with
chronic conditions is supported to greater and lesser extents in the current study.
Implications for Clinical Practice

Although it may seem intuitive it is encouraging to see that the Ethers of children
with chronic conditions remain, at base, fathers, with differences related only to
adaptation necessitated by their child(ren)’s health. This probably indicates that
opportunities for signiﬁcant impact on their concerns and coping exists. Health care
providers, particularly nurses and doctors, have a window of opportunity to intervene and
facilitate positive adaptation at the time of diagnosis. Although this is a time of particular
stress for the Emily, it is also a time when Ethers are usually present. It is at this time,
early in the process, that information can be made available, both verbally and in writing,
to 1) put both parents in the knowledge loop,

2) identify and encourage use of all family members’ informal social support systems,
3) correct any misconceptions and answer questions accurately to prevent

misconceptions, and 4) provide whatever instrumental support is necessary. By

87

strengthening the role of the Ether, the mother-child dyad is strengthened and the entire
family unit proﬁts. When the groundwork is laid at the beginning of the professional
relationship with both parents, work toward positive adaptation is optimized.
\y Limitations
Although Ethers from a variety of ethnic and socioeconomic groups were invited
to participate in the study, the sample was not as heterogeneous as desired. No data were
collected that would differentiate Ethering of children by sex. Fathering of boys and
girls has been previously shown to be different. The parenting needs of Ethers of
children with chronic conditions who live separate from their children was not explored.
Related to the low reliability alphas on the two scales, beliefs and helpfulness of coping,
these data must be interpreted with caution. It is not possible to generalize from this
information to chronic conditions other than those utilized in this study nor does the
signiﬁcant information obtained in this study permit generalization to a wider population.
\ V“ Implications for Future Study
Because of the narrow socioeconomic range of these subjects, continued research
needs to be done to replicate the ﬁndings of this study. Exploration using different
chronic conditions and differentiating the sexes of the children would be of interest.
Also, although correlations were found between the Ethers’ concerns and coping and
their wives, a more extensive examination might be useful. Further study of
interventions in the clinical area would be helpful to optimize adaptation.
J ft onclusions
Children with chronic conditions survive for longer periods of time than has been

historically true, creating a need to promote optimal growth and development for them,

88

‘T ' ‘nlﬁ m

their Emily members and the Emily as a unit. A review of the literature suggests that
fathers of children with chronic conditions have parenting needs that may be different
from fathers of well children. Little attention has been directed toward these differences
and no comparative studies were found focusing on Emilies of children with chronic
conditions. The purpose of this study was to identify and compare the concerns, beliefs,
feelings, and coping strategies of fathers of children with chronic conditions and Ethers
of well children.

Ninety-nine Ethers participated in the study, 48 Ethers of children with chronic
conditions and 51 Ethers of well children. The Hymovich Family Perception Inventory
(FPI) was completed by each Ether anonymously in the privacy of his own home.

The results revealed signiﬁcant differences in the parenting concerns of Ethers of
children with chronic conditions and Ethers of well children. These concerns center
around their children’s health and include the need for knowledge. Fathers of children
with chronic conditions also reported signiﬁcant differences in the parenting concerns of
their wives but with strong correlations to their own concerns. There are indications that
there is a place for anticipatory guidance, dissemination of information, and
encouragement in the use of Ethers’ informal support systems to provide the kinds of

support needed by fathers of children with chronic conditions.

89

APPENDICES

90

APPENDIX A

Table 21: Sample Items from FPI

91

O

 

Table 21. Sample Items from FPI

 

 

 

 

 

 

 

Scale 1: No/Does Not Sure Little Bit Quite a Bit Great Deal
Concerns Not Apply

Feeling worn out 0 1 2 3 4
Scale 2: Does Not Did Not Not Sure Needed 3 Needed a
Needs Apply Need Little Bit Lot
Sleep Habits 0 1 2 3 4
Scale 3: Strongly Agree Not Sure Disagree Strongly
Beliefs Agree Disagree
Parents need someone to talk to

about raising their children 1 2 3 4 5
Scale 4:

Feelings Not at All Not Often Often Very Often
Angry 0 1 2 3

Scale 5: How Often

Coping Do Not Do This Very Rarely Sometimes Very Often
Hide Feelings 0 1 2 3

Scale 6: How Helpful

Helpfulness Never Help Sometimes Almost Always Always Helps
Hide Feelings 0 1 2 3

Scale 7: No/Does Not Little Quite Great Strongly
Children Not Apply Sure Bit a Bit Deal Disagree
It is hard to punish my child 0 1 2 3 4 5
Scale 8:

Spouse No/Does Not Sure Little Bit Quite a Bit Great Deal
Concerns Not Apply

 

Feeling worn out 0 1 2 3 4

92

APPENDIX B

Table 22: Means, Standard Deviations, & Reliability

93

Table 22. Means, Standard Deviations & Reliability

 

(Coefﬁcients of the PPI)

No. of Author’s Study Study Author’s Author’s Study
SCALE Study Mean* Mean S.D. Test- Alpha" Alpha

Items Retest*
Concerns 34 1.81 1.56 .51 .82 .88 .92
Childhelp 18 1.58 1.56 .45 .86 .92 .85
Beliefs 12 1.81 2.00 .31 .33 .62
Feelings 22 1.09 1.47 .56 .74 .88 .94
Coping 21 2.38 2.34 .36 .78 .62 .73
Coping- 21 1.84 l .96 .43 .84 .80 .90
Help
Spousecope 21 2.82 2.31 .41 .82 .66 .77
Spouse 26 2.26 2.60 .60 .92 .88 .91
Concerns
Siblinghelp 7 1.78 1.57 .59 .90 .88

 

*Hymovich (personal communication, 1989)

94

APPENDIX C

Permission Letters

95

RE: IRE I 90300 CATEGORY: 1-C
TITLE: THE NEEDS OF FATHERS PARENTING CHILDREN WITH CHRONIC COWITIONS

ANNUAL APPROVAL care: Nev re. 1990
asvrsrou REQUESTED: W 13. me
asvrsrou APPROVAL oars: September 17. ms

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Meters. the UCRIHS APPROVED THIS PROJECTS REVISION.

This letter approves the addlﬂon of Dr. Llehgenberg's name to the eeaent Iona.

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UCRIHSOpIoLmeu.edu.

 

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FROM: . Palm Wham. PhD m?

cm. Behaviord Insiimh'ond Review Bord (803)
DATE: AIM". 1999
RE: WNTWMdeFMPWWWMW'NO

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EXPIRATION DATE: August 16, 2000

 

 

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97

mwww

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m Children's Hospital

of Michigan

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June 28, 1999

I,Kantthambhanl,givemypermissionforJudIm K. Hovey,moontactseiectedfamllisofmy
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Kanta Bhambhanl, M.D. Date
Associate Professor of Pediatrics

Division «Hematology/Oncology

Chiidren'a Hoepibl at Michigan
301 Beaubien Bouevard Detroit. Midigan «201-2196 313.745.5515 Fax 313.745.5237

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Hovey, ifhetsmdyreoeiveisBapproval, insolicitingfathersto
participate inhersmdy,“‘1‘heNeeds ofFathers Parenting Children
with Chronic Conditions.”

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3901 Beach m Detroit. Mid-m 48201-2195
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DearMs.Hovey:

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onapprovai oftheHumanSubjeotsCommitteehereatWaym State Universityandappropriateprivaey
safeguards.

1 wish you every success with this project
Sincerely,

' ' ' \\\,\, ST (ELLA
Debbie S. Toder, MD.
Pediatric Pulmonologist
Director, Cystic Fibrosis Center
050:: (313) 745-5541

Fax: (313) 993.2948
mil: tinder @ medwayneerhr

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Children’s Hoepital oi Michigan
3001 BearrbienDetroit. Michigan 48201-2198 313.745.5541 Fax 313.993.2948

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APPENDIX D

Informational Letter

102

Informational Letter

Dear Mr. ,

 

Because you are a father, you are in the best position to provide information that
will help health professionals improve the care that we give to families, both with well
children and with children with chronic conditions. Therefore, as a father, I invite you to
be a part of this study although there will be no direct beneﬁt to you.

The investigator is a registered nurse currently enrolled in the PhD. Program in
Family and Child Ecology at Michigan State University. She is working on a research
study about families who have children with chronic conditions and about families with
children who do not have chronic conditions. Because the well being of one family
member affects every other family member, she is asking for information about your
concerns, your beliefs and feelings about caring for your child(ren), your coping, some
general information, your view of your spouse’s concerns and coping, and about your
children, both with and/or without chronic conditions. The study is entirely voluntary
and your decision to participate or not participate will in no way affect or interfere with
the care you receive or might receive in the future from your child’s health care
provider(s).

A questionnaire has been enclosed that will take about thirty minutes to complete.
Please ﬁll it out and return it within the next week ifpossible. There is also a stamped,
self-addressed envelope in which to return your completed questionnaire and a two-dollar
bill as a token of appreciation for your anticipated participation.

The needs of fathers and the ways they view their needs are ﬁequently different
from others. The answers of each father will not necessarily be the same. There are no
wrong answers.

When you look at the questionnaire, you will notice that there is no place for your
name. Please do not write your name anywhere on the questionnaire. This way the
answers you give me will be totally conﬁdential. The infornmtion you provide will be
combined with the answers of other fathers to give an overall picture. Individual
responses will not be singled out for use in any way. When you read the questionnaire,
you may choose to answer any or all of the questions. Return of the completed
questionnaire will indicate your voluntary consent to participate. If you do not wish to
participate after all, please return the blank form in the enclosed envelope.

The University Committee on Research Involving Human Subjects (UCRIHS)
chair: David E. Wright, can be reached at (517) 355-2180 if you have any questions
regarding your rights as a research subject. The investigator, Judith Hovey who can be
reached at (248) 370-4477 will answer any questions you have regarding the study. Dr.
Peter Lichtenberg, Chairman of the Wayne State University Behavioral Investigation
Committee can also be contacted if you have questions regarding your rights as a
research subject at (313) 577-5174. Thank you for your consideration.

Sincerely,

Judith K Hovey, Pth MSN, RN, CPNP

103

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104

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