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FAMILY ADAPTATION TO CHRONIC CHILDHOOD ILLNESS
BY

Linda Jan Spence

A DISSERTATION

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

DOCTOR OF PHILOSOPHY

Department of Psychology
1992

ABSTRACT
FAMILY ADAPTATION T0 CHRONIC CHILDHOOD ILLNESS
By

Linda Jan Spence

The process of family adaptation to chronic Childhood illness was
investigated after the diagnostic period. Participants were 28 families
of school age children with asthma, congenital heart disease, cystic
fibrosis, or insulin dependent diabetes mellitus and 17 matched
comparison families with healthy children. Using an adaptation Of the
FAAR Model to conceptualize demands, resources, perception of demands,
coping, and family functioning, data was collected from the parents,
target children, and Siblings. Families with chronically ill children
reported a greater number of positive life events, total life events,
and uplifts, with negative life events approaching significance.
Demands were perceived by the chronic illness group as being more
intense. The families with chronically ill children reported a greater
number and broader range Of coping responses than the comparison
families and scored significantly higher on family cohesion and
religious emphasis. The conceptual model predicted a significant amount
of the variance in perception of demands, coping, and the nine
dimensions of family functioning. Of particular interest was the
stronger predictive value Of uplifts intensity for coping and adaptive
dimensions of family functioning relative to the intensity of life
events and hassles. These findings suggest that families with
chronically ill Children have strengths in coping skills and family
functioning that facilitate their adaptation to the high number and

intensity of demands they face. Uplifts, which are infrequently
studied, appear to play an important role in this process. Greater
knowledge of effective family adaptation to chronic childhood illness
would contribute to the identification of precursors of maladaptation

and preventive intervention strategies.

THIS DISSERTATION IS DEDICATED TO
MARSHA F. HORBY
WHO GAVE ME THE COURAGE TO PURSUE MY DOCTORATE
AND
THE STRENGTH TO PERSEVERE

AND

CYRIL M. HORBY

HHO HILL ALHAYS BE AN INSPIRATION

TO MY COMMITMENT TO
FAMILIES AND CHRONICALLY ILL CHILDREN

iv

ACKNOWLEDGEMENTS

I wish to thank the members of my committee, Drs. Hiram Fitzgerald,
Martha Karson, John McKinney, and Ellen Strommen, for their
encouragement, guidance, and support not only during my dissertation but
throughout my doctoral program. A heartfelt thank you to Hi Fitzgerald,
my dissertation chairperson and major advisor, for his prompt reading of
every draft, his insightful comments, and most Of all his unfailing
optimism that my dissertation would get completed. I also wish to thank
Dr. Neal Schmitt for the assistance he gave as my psychometric
consultant. His psychometric versatility and ability to discuss it in
plain English is a true gift.

A special thank you is given to all of the families who gave of
their time to participate in this study and the pediatric
subspecialists, Drs. Richard Honicky, David Hatisoff, Albert Sparrow,
and Bruce Hilson, for their cooperation and assistance in the
recruitment of families.

A sincere thank you goes to my colleagues and friends, Carla Barnes
and Patty Peek, whose help and support was invaluable to the completion
of my dissertation.

And finally I wish to express my Sincere gratitude to Jack Perrone
and my longtime friends from Point Clark, Ontario, for their empathy and
support throughout the trials and tribulations of graduate study.

TABLE OF CONTENTS

List Of Tables .......................... viii
List of Figures ........................... ix
Introduction ............................ 1
Common Characteristic of Chronic Childhood Illness ......... 2
Statement of the Problem ...................... 4
Chapter 1 Review of Literature ................... 5
Conceptual Model .......................... 7
Demands ........................... y. . . . 7
Resources .............................. 9
Perception of Demands ........................ 9
Coping ............................... 10
Adaptation and Family Functioning .................. 10
Review of Literature ........................ ll
Demands ............................... 11
Summary ............................... 14
Resources .............................. 15
Family Resources .......................... 15
Resources of the Mother ....................... 19
Resources of the Father ....................... 23
Resources of the Chronically Ill Child ............... 25
Resources of Siblings ........................ 37
Perception of Demands ........................ 41
Summary ............................... 44
Coping ............................... 45
Initial Reactions . . . .1 ...................... 46
On-Going Coping ........ - ................... 51
Summary ............................... 54
Adaptation and Family Functioning . .. ................ 55
Summary ............................... 65
Conclusion ............................. 65
Chapter 2 Methodology ........................ 68
Sample ., .............................. 68
Procedures ............................. 70
Instruments ............................. 70
Demands ............................... 70
Perception Of Demands ........................ 79
Resources .............................. 79
Coping ............................... 84
Family Functioning ......................... 84
Data Analysis ............................ 85
Correlational Analysis ....................... 89

vi

Table of Contents (cont'd)

Analysis of Variance ........................ 90
Multiple Regression Analysis .................... 90
Hypotheses ............................. 91
Chapter 3 Results .......................... 97
Correlational Analysis ....................... 97
Demands ............................... 97
Resources ............................. 101
Perception of Demands ....................... 104
Coping .............................. 106
Family Functioning ........................ 108
Analysis of Variance ....................... 109
Demands .............................. 111
Resources ............................. 114
Perception Of Demands ....................... 127
Coping .............................. 136
Family Functioning ........................ 140
Summary .............................. 147
Multiple Regression ........................ 148
Perception Of Demands ....................... 149
Coping- .............................. 155
Family Functioning ........................ 155
Summary .............................. 160
Chapter 4 Discussion . . ..................... 163
Demands .............................. 163
Resources ............................. 168
Perception of Demands ....................... 175
Coping .............................. 182
Family Functioning ........................ 185
Limitations of the Study ..................... 188
Summary .............................. 190
List Of References ........................ 193

vii

Table
Table
Table
Table
Table
Table
Table

Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table
Table

moo NGU‘IAwN—I

LIST OF TABLES

Family Member Characteristics ............... 71
Family Characteristics .................. 73
Family Functioning Questionnaire-Original Subscales . . . . 88
Family Functioning Questionnaire-New Subscales ...... 88
Summary of Correlational Hypotheses for Demands ...... 92
Summary of Correlational Hypotheses for Resources ..... 93
Summary of Correlational Hypotheses for Perception

Of Demands ........................ 94
Summary of Correlational Hypotheses for Coping ...... 94
Summary Of Correlational Hypotheses for Family Functioning 95
Correlation Matrix for Demands . . . ........... 98
Correlation Matrix for Resources ............ 102
Correlation Matrix for Perception of Demands ...... 105
Correlation Matrix for Coping .............. 107
Correlation Matrix for Family Functioning ........ 110
Demands-Analysis of Variance by Group .......... 112
Positive Life Events-Analysis of Variance ........ 113
Total Life Events-Analysis of Variance ......... 115
Uplifts Frequency-Analysis Of Variance ......... 116
Family Resources-Analysis of Variance .......... 117
Perceived Scholastic Competence-Analysis Of Variance 119
Perceived Social Acceptability-Analysis of Variance . . . 120
Perceived Athletic Competence-Analysis of Variance 121
Perceived Physical Appearance-Analysis Of Variance 123
Perceived Conduct-Morality-Analysis of Variance ..... 124
Global Self Horth-Analysis of Variance ......... 125
External Locus of Control-Analysis of Variance ..... 126
Perception of Demands-Analysis Of Variance by Group . . . 128
Negative Life Events Intensity-Analysis of Variance . . . 129
Positive Life Events Intensity-Analysis of Variance . . . 132
Total Life Events Intensity—Analysis of Variance 134
Uplifts Intensity-Analysis Of Variance ......... 137
Coping-Analysis of Variance by Group .......... 139
Total Coping-Analysis of Variance ............ 141
Seeking Spiritual Support-Analysis of Variance ..... 142
Acquiring Social Support-Analysis Of Variance ...... 143
Family Functioning-Analysis of Variance by Group 144
Family Cohesion-Analysis of Variance .......... 145
Family Religious Emphasis—Analysis Of Variance ..... 146
Summary of Multiple Regression ............. 150

viii

LIST OF FIGURES

Figure 1 Family Adaptation ..................... 8

ix

INTRODUCTION

Biomedical advances in recent decades have extended the lifespan
and decreased the mortality of chronically ill children. Although
actual data are not available, estimates indicate that 10%-20% of the
Children in the United States have a chronic illness (Gortmaker 8
Sappenfield, 1984; Harkey, 1983; Hobbs, Perrin, Ireys, Moynihan, and
Shayne, 1984; Perrin 8 MacLean, 1988). Moreover, the incidence of
chronic illness in childhood appears to be increasing (Newacheck,
Budetti, 8 Halfon, 1986; Pless 8 Perrin, 1985). Of this group
approximately 1,000,000 children (1%—2% of the child population) have
severe physical involvement. Another 9,000,000 children have less
severe involvement (Harkey, 1983; Hobbs et al., 1984; Perrin 8 MacLean,
1988). Using two parents and one Sibling as an average one could
estimate that 3,000,000 family members or more are living and dealing
daily with severe chronic childhood illness and another 27,000,000 are
dealing with children who have mild to moderate limitations. The
effects of chronic illness on the family include: the need for daily
care; the high cost of treatment; the Often unpredictable future course
of the illness; and potential disruption of family life, family
development, and the development of individual family members.

Chronically ill children and their families merit public attention
for several reasons (Pless 8 Perrin, 1985). They are the recipients of

a sizeable public investment of total dollars and professional time for

1

2
child health care and medical services. Chronically ill children
constitute 50% Of pediatric practice (Magrab 8 Calcagno, 1978). These
children and their families present special needs that are not likely to
be met through any existing or proposed programs for general child
health care. Technological and health care advances have resulted in
prolongation of life in children who would have died in years past.
Currently about 80% Of children with severe long term illness survive to
young adulthood (Perrin 8 MacLean, 1988). As the number of these
survivors jncreases it might be found that they have a relatively
greater frequency of physical and developmental handicaps.
Common Characteristics of Chronic Childhood Illness

Common characteristics Of chronic childhood illness include: long
duration, need for specialized health care serviCes, on-going management
in the home and health care settings, frequently shortened life
expectancy, and no known cure or uncertain prognosis (Stein, 1983). For
research and service purposes a strong case can be made for viewing all
chronic conditions as one group having many problems in common
regardless of their individual characteristics (Pless 8 Perrin, 1985).
Utilizing the combined data from an institutional sample (N-134) and a
national probability sample (N-329) of chronically ill children, Stein
and Jessop (1989) found greater variability within diagnostic groups
than between diagnostic groups on multiple psychological, social and
developmental measures. Needs and problems cannot be predicted from the
type and/or severity of the disability alone. From a psychosocial
perspective, chronicity itself is thought to have a powerful effect on
child develOpment and family functioning. The empirical literature

supports the belief that the presence Of'a disorder which makes the

3
child ‘different' from peers and persists for a Significant period of
time creates a potential risk for normal psychosocial development.
Studies Of self-reports of chronically ill children and their parents
indicate that there are a limited number Of difficulties experienced
frequently by many if not most families that have a child with a chronic
disorder. These difficulties vary little from disorder to disorder and
from family to family. The nature of the family rather than the nature
of the disorder is likely to determine the frequency with which certain
problems are experienced. Early research linked specific personality
profiles with specific illnesses in a cause-effect paradigm. Recent
research suggests that where there are apparent patterns of psychosocial
maladaptation, factors related to the family and the social
circumstances of the child are the important determinants of who has
problems and who does not. There is little evidence that the type of
difficulties experienced by the child or family is related to the
specific medical condition. The impact of chronic childhood illness on
a family is extremely variable but the types Of family problems
documented are similar across conditions (Pless 8 Perrin, 1985; Stein 8
Jessop, 1982),f/1t has been documented consistently that the
psychosocial impact of chronic illness on the child and family is
determined largely by factors not intrinsic to any particular diagnostic
category. Determinants of ultimate function are to a large degree
demographic, psychosocial, and developmental and include such factors as
age, developmental level, family characteristics, personality

characteristics, and community resources (Korsch, 1985).

4
Statement of the Problem

The purpose of this study was to examine adaptation of families
with chronically ill children after the initial diagnostic period.
Adaptation aS reflected in the quality of family functioning was
examined in the context of a conceptual model of family adaptation
(Figure 1, page 76). The adaptation process is viewed as a process that
families are continuously involved in as they develop across time. The
quality of family functioning is influenced by the demands, resources, ,1
perception of the demands, and coping Skills of the family. In this
study family functioning and the influencing factors will be examined in
families with chronically ill children and comparison families with
healthy children. Asthma, congenital heart disease, cystic fibrosis,
and diabetes mellitus were selected as representative chronic childhood
illnesses based on their frequency. These are also frequently
researched diagnoses which will facilitate comparison of the findings of
this study with previous research. The focus Of this study will be the
overall functioning Of the family rather than the outcome of coping with
a Specific event or crisis such as diagnosis or death. The majority of
the research on chronic childhood illness has focused on individual
family members, usually the chronically ill child or the child's mother,
psychopathology/maladaptation, and the time periods surrounding
diagnosis and death. There have been a limited number of studies Of
families with chronically ill children. Typically the data from these
studies have been collected from one family member, usually the mother.
Studies of individual family members indicate that mothers, fathers,
siblings, and the chronically ill child respond differentially to the

illness and its related effects. Consequently it would seem that each

5
family member contributes to the family unit's experience. This study
will use data from parents, target children, and siblings to investigate
family adaptation to chronic childhood illness after the diagnostic
period and prior to the terminal phase of illness (in illnesses where

that may occur).

CHAPTER 1 REVIEW OF LITERATURE

Family adaptation is an on-going process that involves not only the
inter-related family members but also factors internal and external to
the family. It is not static nor is it a simple cause-effect
phenomenon. A conceptual model provides a theoretical and
organizational framework for the examination Of family adaptation. The
conceptual model for this study will be described in detail later. It
involves five constructs: demands on the family, family resources, the
family's perception of the demands, family coping responses, and styles
Of family functioning. This model will be used to examine the demands
faced by families with chronically ill children and how these families
perceive or define the demands in terms Of intensity. Family resources
allows for the exploration of family and individual Characteristics that
may influence the family's coping responses and style of family
functioning. Family coping responses and styles Of family functioning
provide a means Of exploring the relationship of these two parameters
with each other as well as how these constructs are influenced by the
demands, perception of demands, and resources of the family.

The review of literature will begin with a description of the
conceptual model. This will be followed by examination of the chronic
childhood illneSs literature related to each Of the five model
constructs. Nithin those five sections the research will be examined
according to the focus of the study beginning with research related tO
the total family followed by studies focusing on the mother, father,

chronically ill child, and siblings respectively when available.

7
CONCEPTUAL MODEL

The conceptual model of family adaptation for this study (Figure 1)
was based on the model developed by McCubbin and his colleagues
(Patterson 8 McCubbin, 1983a; McCubbin 8 Patterson, I983b; McCubbin 8
Thompson, 1987) from Hill's (1958) classic work on family vulnerability
to crisis. The model includes the interaction Of demands and resources
leading to the family's perception of the demands. The family as a unit
and the individual family members respond cognitively and behaviorally
to their perception Of the demands in order to restore stability. These
coping responses lead to varying degrees Of change in family
functioning. In the McCubbin model (McCubbin 8 Patterson,1983b,
McCubbin 8-Thompson, 1987) when the family is able to restore stability
‘without changing the structure of its patterns of interaction it is
considered adjustment. Hhen changes in patterns of interaction and/or
structure are needed to reStore stability it is considered adaptation.
Chronic childhood illness requires adaptation on the part of the family.

Demands

Each Of the components in the model (Figure 1) directly or
indirectly influences the family's functioning. The overall model
conceptualizes family adaptation. Demands are stressors that place
pressure on the family to restore stability. They include the initial
stressor (chronic illness), hardships from the initial stressor which
have persisted or increased over time, prior strains, additional life
changes and events including normative transitions, and stresses that
have emerged from specific coping behaviors used by the family (McCubbin
8 Patterson, 1983b; McCubbin 8 Thompson, 1987). In families with a

chronically ill child, hardships from the initial stressor are Often

 

 

 

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increased by the financial, temporal, and emotional demands on the
family, and exacerbation Of the illness. Marital dysfunction or
conflicts with extended family members are stressors that may precede
the illness. Coping behaviors such as taking a second job and moving
closer to medical care can also result in demands on the family. The
degree of pressure resulting from the demands will be influenced by the
family's resources.
Resources

Resources are the capabilities of individual family members, the
family system, and the community for meeting the demands. These
capabilities include psychological, social, and interpersonal
characteristics as well as material resources. Perceived self
competence, locus Of control, cognitive capacity, and psychological
well-being Of family members are individual characteristics that can
serve as resources for the family. Hithin the family system, the
quality of relationships, communication, and organization can be
valuable resources. Material resources such as time and money also
influence the family's capability to meet demands. Instrumental and
psychological support from neighbors and agencies within the community
are further resources for a family.

Perception of Demands

Perception Of demands is the family's subjective definition or
perception of the total Situation. It will be influenced by the actual
demands and the family's resources. The perception of the demands will
Change as a family copes with and adapts to on-going and new

experiences.

10
Coping

In this model coping is defined as the cognitive and/or behavioral
responses of the family unit and individual family members. The coping
responses are made in an effort to eliminate and/or avoid the stressors
and strains, to manage the hardships Of the situation, and to acquire
and develop social, psychological, and material resources to meet the
demands. Efforts to avoid or eliminate the stressors are Often an
initial response. However, avoidance/elimination is ineffective with
many stressors such as family conflict or developmental transitions.
Families may then attempt to utilize their current resources to manage
the demands. The most challenging of the coping responses is the
development of new or strengthened social, psychological, and material
resources. Not all families have the capacity for all three types Of
coping responses. Different types of coping responses will have
different effects on family functioning.

Adaptation and Family Functioning

Adaptation is a continuous process in which demands, resources, and
the perception of demands interact, leading to the family's coping
responses which influence the characteristics of family functioning. At
a given point in time family adaptation is reflected in the
characteristics of family functioning in areas such as family cohesion
and organization, sense Of control over environmental influences, and
the promotion of individual and family development. Demands and
resources interact leading to the family's perception of demands and the
family's coping responses which influence the level of family adaptation

through family functioning.

11
REVIEW OF LITERATURE
Demands

Demands consist of: a) the initial stressor (chronic illness) and
its hardships that have increased or persisted over time; h) prior
strains; c) additional life changes; and d) the stresses that have
emerged from specific coping behaviors used by the family (McCubbin,
McCubbin, Patterson, Cauble, 8 Nilson, 1983a). The diagnosis Of a long
term and sometimes life-threatening illness is a threat to the child's
well-being as well as to the parents' hopes, competence, and security
(Lavigne 8 Burns, 1981). In families of children with cystic fibrosis,
strained family relationships were reflected in a number Of ways
(McCubbin, et al., I983a). Overprotection of the ill child led to
strained family relationships and jeopardized the ill child's
development. In addition to overprotection, scapegoating, and blaming,
overt or covert rejection Of the ill child was also found. In some
families coalitions developed between the primary caregiver and the ill
child resulting in other family members feeling left out. The parents
reported guilt and anger about genetic responsibility and experienced
worry or resentment regarding possible extended caregiving
responsibilities. Comparison of the ill child with siblings and
discrepancies regarding uneven physical, social, and intellectual
development added further to the family strain. Strained family
relationships were also reflected in Sibling competition for parent time
and attention as well as an overall increase in intrafamily tension and
conflict.

Hardships may be created by modifications in the family activities

and goals that result from reduced flexibility in the use of leisure

12
time and vacation, decreased career Opportunities for both parents, and
worry and uncertainty about having more children. Hardships reported by
families Of children with cystic fibrosis included: increased tasks,
time commitment, financial needs, limitations in parental occupation,
and alteration in the home environment to accommodate special equipment
when needed. These hardships resulted in further demands on the family
(McCubbin, et al., 1983a, Meyerowitz 8 Kaplan, 1967). The families in
the study by Meyerwitz and Kaplan (1967) reported that the mothers were
not able to work outside of the home due to the complicated routines and
difficulty finding adequate child care. The fathers were Often unable
to take advantage of occupational Opportunities due to limited family
mobility. The families in the study by McCubbin (1983a) reported
experiencing social isolation due to friends' and/or relatives'
reactions to and expectations of the chronically ill child, family
embarrassment, limited mobility of the ill child, unavailability Of
adequate child care, and fear Of accidents or exposure to infection.
Social isolation may result in further modification of the families'
activities and goals. Families of children with congenital heart
disease reported Similar demands. These families described upset family
balance, modification Of social life, extra expense, and somatic and
behavior problems in siblings (Apley, Barbour, Nestmacott, 1967).
Residual family tension is created by unresolved prior stressors or
intrinsic strains in the on-going roles Of family members. These
strains are Often exacerbated by stress and tend to be insidious, Often
making the onset and resolution unclear to the family (McCubbin 8
Patterson, 1983b).. Prior marital problems were found to be exacerbated

by the diagnosis Of a chronic childhood illness. Closed communication

13
in families of chronically ill children led to increased family stress
and resentment (Kaplan, Grobstein, 8 Smith, 1976). The pile-up of
demands particularly in areas of intrafamily development and
relationships, family management and decisions, and family finances can
effect the health Of the chronically ill child and the family (Patterson
and McCubbin, 1983b).

Frydman (1981) found a direct effect for life stress on the
psychological symptomatology in families Of chronically ill children.
This finding is supported by Bedell and his colleagues (Bedell,
Giordani, Amour, Tavormina, 8 Boll, 1977) who found that chronically ill
children with low life stress scores had significantly higher self-
concept scores and rated themselves as better behaved, more intelligent,
more physically attractive, socially popular, happier, and satisfied
with themselves than the high life stress group. The life stress scores
in the low stress group were comparable to the average for healthy
children while the scores for the high stress group were Significantly
higher. A significant relationship also has been reported between
family life stress scores and the physical health Of children with
cystic fibrosis (VanOs, Clark, Turner, 8 Herbst, 1985).

Demands on the family are further added to by the consequences Of
the family's efforts to cope, ambiguity about roles and structure, and
social ambiguity when social guidelines for coping are not clear.
Parents reported increased demands related to their efforts to cope with
medical concerns such as Obtaining competent care; understanding,
clarification, and verification of medical information; ability to
follow-up with prescribed home treatment; the child's compliance;

helping the child endure or minimizing the child's pain; and worry and

14
uncertainty about the prognosis (McCubbin et al., 1983a). Unfulfilled
parental expectations Of the health care system may also contribute to
the pile-up of demands. Hhen presented with ten psychosocial issues 76%
of parents with chronically ill children expected these issues to be
discussed in physician interaction. Eight of the ten issues were
discussed in less than 50% Of the interactions. Six of the ten issues
were discussed in less than 20% of the interactions. Unfulfilled
expectations were associated with lower satisfaction with medical care
(Lau, Hilliams, Nilliams, Hare, 8 Brook, 1982). These psychosocial
issues would then need to be addressed either within the family or
through other social groups in the community.
Summary

All families are faced with demands that have an impact on the
family unit and the individual family members. The research related to
demands in families with chronically ill children has primarily been
descriptive and without comparison groups. The care of a Chronically
ill child was consistently found to place additional demands on the
physical and emotional energy of the family as well as their temporal
and material resources. Families Of chronically ill children reported
complex caregiving responsibilities, difficulty finding child care, and
limited family mobility. The limited family mobility resulted in
decreased career Opportunities, alterations in the family's leisure and
recreational activities and in some families social isolation. The
families reported that negative attitudes of extended family and friends
contributed further to the experience Of social isolation.

Generic demands such as intrafamilial and extrafamilial conflict,

normative transitions, and the consequences Of Specific coping efforts

15
add to the demands on all families. Families with chronically ill
children faced both generic demands and demands resulting from the
management of the their child's illness. Intrafamilial tension and
conflict was increased in families where overprotection of the ill
child, scapegoating, and the formation of family coalitions were found.
Familial tension was also contributed to by medical concerns such as
acquiring knowledge Of the illness and its treatment, Obtaining adequate
medical care, and unfulfilled expectations Of the health care system.
Resources

Resources refer to the family's ability to meet the demands and
needs Of the family unit and its individual members. Resources include
psychological, social, material, and interpersonal characteristics Of
the individual members, the family system, and the community. family
system_re§ggrge§ include cohesion, adaptability, Open communication,
conflict resolution Skills, and Open expression of affect (McCubbin 8
Patterson, 1983b). 3esggrges_gf_1ngiyidga1_famflly_membe:§ include self-
esteem, effective communication, mutual assistance and support,
problem~solving ability, physical and emotional health, and sense of
mastery Over events. Because resources include characteristics of
individual family members this has been the most widely studied
component Of the model. This section of the literature review will
address family resources followed by resources of the mother, father,
chronically ill child, and siblings respectively.

W

Resources can decrease family conflict, aid in the prevention of

crisis, and facilitate family adaptation. Psychosocial characteristics

of the family may serve as resources. In one study family cohesion and

16
expressiveness was positively related tO the social competence of
'chronically ill and handiCapped children while child adjustment as
measured by behavior problems was positively related to family conflict
and negatively related to family cohesion and organization (Nallander,
Varni, Babani, Banes, Nilcox, 1989). A study of communication style
found that families Of hemophiliacs who used Open communication prior to
the diagnosis of a child's chronic illness tended to use and retain
clear, Open, and functional communication during adaptation to the
chronic illness. In contrast blurred and closed communication tended to
be exacerbated when a child was diagnosed with a chronic illness. The
families with closed communication tended to form internal alliances and
displace conflict inside of the family resulting in impoverishment of
their social, affective, and intellectual lives. Initial dysfunctional
communication was associated with severe conflicts and major opposition
(Kaplan, Grobstein, 8 Smith, 1976; Pacquay-Heinstock, Appelboom-Fondu, 8
Dopchie, 1979). Residual family tension, created by unresolved prior
stressors or intrinsic strains in the on-going family roles is often
exacerbated by stress and tends to be insidious making the onset and
resolution unclear to the family (McCubbin 8 Patterson, 1983b).

A common misperception is that there is a higher rate of divorce in
families with chronically ill children. Research supports a higher rate
Of marital distress but not a higher divorce rate in these families
(Kaplan et al., 1976; Lansky, Cairns, Hassanein, Nehr, 8 Lowman, 1978;
Maddison 8 Raphael, 1971; Sabbeth 8 Leventhal, 1984; Salk, Hilgartner, 8
Granich, 1972; Silbert, Newburger, 8 Fyler, 1982). NO significant
difference in divorce rates was found between families with cardiac

children, control families, and the national divorce rate. The divorce

17
rate in both groups was related tO younger maternal age and lower SES
(Silbert, et al, 1982). Marital and family conflict may result from
parental overcommitment and overcaring for the ill child (Maddison 8
Raphael, 1971). Marital distress has also been found to be related to
diagnosis and severity Of illness but not the prolonged survival or
death of the child (Steinhausen, Schindler, 8 Stephan, 1983a). Despite
the marital distress reported in many studies, fifteen of sixteen
couples with hemophiliac sons reported that having a chronically ill
child brought them closer together or did not change their marital
relationships (Markova, MacDonald, 8 Forbes, 1980). Even in the
presence of marital distress having two parents in the home may serve as
a resource for the families of chronically ill children.

Social support has been investigated as a resource in family
adaptation. One study Of social support in families with chronically
ill children found that crisis support, neighborhood interaction, and
coping style correlated significantly with anxiety and psychiatric
symptoms in the parents. In general, support mediated the incidence of
psychiatric symptoms in the presence Of high life stress but had little
effect with low life stress (Frydman, 1981). In another study mothers
who perceived more social support were found to provide more stimulation
for their infants who had been in the NICU (Pascoe 8 Earp, 1984). The
age of the parents and child may influence social support. One study
found that although younger parents Of leukemics were more able to call
on relatives for assistance, when the child was younger there was a
greater decrease in social activity (Meyerowitz 8 Kaplan, 1967).

In families of diabetic children the capacity of family members to

enjoy each other, family stability, intact generational boundaries, home

18

adjustment, IQ, and SES were associated with good diabetic control,
increased self-esteem and independence. Poor diabetic control was
associated with adverse family psychosocial factors such as low parental
self-esteem, indifferent parental attitude, poor coping abilities of the
family, and poor quality Of family functioning (Gath, Smith, 8 Baum,
1980; Klusa, Habbick, Abernathy, 1983; Sullivan, 1979; Swift, Seidman,
Stein, 1967). The diabetic families in the study by Swift and his
colleagues (1967) shOwed significantly more extreme emotional tone in
the home, maternal overprotection-neglect, and parental dominance-
submission than control families. I

In families of children with cystic fibrosis'sharing the burdens of
the illness within and outside Of the family was positively associated
with family functioning. There was no significant relationship between
sociodemographic variables, financial stress, and family functioning
(Venters, 1981). ’Family functioning was found to be a better predictor
of the ill child‘s adjustment than the presence Of illness. Nhen family
functioning was controlled the behavior problems reported by mothers of
children with cystic fibrosis and asthma were no longer significant
(Lewis 8 Khaw, 1982). Parents of children with cystic fibrosis reported
closeness to the medical center, adequacy Of the physical environment,
resources to meet the expenses and mastery of the therapeutic techniques
as important resources (McCOllum 8 Gibson, 1970). Family adjustment was
Significantly related to asthmatic children's adjustment in a 10—12 year
follow-up (McLean 8 Ching, 1973).
Smear!

Family adjustment and relationships are not necessarily poor in

families with chronically ill children. The quality of family

l9
adjustment is related to the family's psychosocial, material, and
interpersonal resources. AS with demands the research on resources in
families of chronically ill children has been descriptive and with few
comparison groups. Although these studies do not provide a basis for
the comparison Of families with chronically ill children and families Of
healthy children, they do provide many consistent findings related to
the adaptation Of families with chronically ill children. Specific
factors that have been found to serve as resources are family cohesion,
family organization, and open, effective family communication. Adverse
family psychosocial factors such as closed or dysfunctional
communication, low parental self-esteem, poor family coping skills, and
ineffective family functioning have been found to negatively effect
family adaptation, child adjustment, and illness management. Although
marital and family conflict may result from the overinvolvement of one
or both parents in the care of the ill child, research has consistently
found no increase in the divorce rate of parents with chronically ill
children. Having two parents, even in the presence of marital distress,
may serve as a resource in these families. One study found that
particularly in the presence of high life stress, social support
facilitated positive parental adaptation. Thus the quality of the
marital relationship and social support can serve as resources for the
family.
3W
Much of the research on chronic childhood illness focuses on the
ill child's mother. Although maternal psychosocial functioning can
serve as a positive family resource, most research to date has focused

on deficits in maternal functioning. In two early studies, the mothers

20
Of chronically ill children were found to have significantly lower
general self-esteem and Significantly higher social introversion than
mothers of healthy children but not mothers Of mentally retarded
children (Cummings, Bayley, 8 Rie, 1966; Gayton, Friedman, Tavormina, 8
Tucker, 1977). Their general self-esteem in the first study fell
between that of mothers with healthy children and mothers with mentally
retarded children. Although the mothers Of chronically ill children
were found to have lower self esteem than the mothers Of healthy
children in this study, both Of these groups of mothers had lower levels
of expressed depressive affect than the mothers of mentally retarded and
neurotic children. The mothers Of the chronically ill children did
report less enjoyment Of the ill child than mothers Of healthy children.
This diminished enjoyment did not generalize to their other children,
their husbands, or their neighbors (Cummings et al., 1966). In contrast
thesecond study found a greater frequency of emotional disturbance and
higher scores on depression for mothers Of chronically ill children
compared to fathers and parents of healthy children (Gayton et al.,
1977). A more recent comparison of mothers of healthy children and
mothers of children with cystic fibrOsis, diabetes, or moderate mental
retardation found no significant difference in the level of depression
reported by mothers Of healthy children and those with chronically ill
children. Maternal employment outside of the home was a significant
predictor of maternal depression but not the child's condition (Nalker,
Ortez-Valdes, 8 Newbrough, 1989). In a second study by Nalker, mothers
of school age children with cystic fibrosis rated themselves as
significantly more competent at parenting and discipline than mothers Of

healthy children (Halker, Ford, 8 Donald, 1987).

21

Depression and parenting have also been examined in mothers of
diabetic children. A longitudinal study Of children with diabetes from
the time of diagnosis found that the mother's distress shortly after the
diagnosis was the best predictor Of later maternal symptomatology.
Maternal depressive symptoms decreased over the first year then
increased over time but remained below the levels generally considered
to be clinically significant. Maternal symptoms were not significantly
related to the child's compliance with the medical regimen, metabolic
control, or rehospitalization (Kovacs, Iyengar, Goldston, ObrOSky,
Stewart, 8 Marsh, 1990). In terms of parenting, mothers Of diabetics in
one study showed extreme scores on protection-neglect (Swift et al.,
1967). For the diabetic children but not their healthy siblings the
mother's behavior had a positive relationship with the child's self—
esteem and satisfaction with his/her own behavior. The mother's
behavior had a negative relationship with the diabetic Child's academic
achievement (Crain, Sussman, 8 Neil, 1966).

In an early study of families of children with congenital heart
disease maternal immaturity was related to a number of factors that
could create difficulties for the families. For the mothers themselves
immaturity was related to below average intelligence, anxiety proneness,
and over-reacting to situations and events. On the family level
maternal immaturity was related to paternal immaturity, lack of outside
interests, decreased social life, and not leaving the child with
neighbors (Apley et al., 1967).
511mm

Mothers have an important role in the development of their

Children. The effects Of this role may be even greater with a

inc
fou
chr

of

em
in
chr
bei
cor
die
fear
The
Chi
cor
m:
of
Ch;
thi
am
Thu

Tel

22
chronically ill child. Studies focusing on the maladaptation of mothers
with chronically ill children found that these mothers experienced
depressive affect, social introversion, conflicts regarding protection
of the ill Child, and in some Cases diminished self-esteem. The
findings related to maternal depression and depressive affect have been
inconsistent. Two studies (Cummings et al., 1966; Gayton et al., 1977)
found greater levels of depressive symptomatology in mothers Of
chronically ill children than mothers of healthy children, however, one
of these studies (Cummings et al., 1966) found the same mothers to have
lower levels Of depressive affect than mothers of mentally retarded or
emotionally impaired children. A third study (Walker et al., 1989)
found no significant differences in depression between mothers of
chronically ill and healthy children. In this study, employment was a
better predictor Of the level Of maternal depression than the child's
condition. A longitudinal study found that depression in mothers of
diabetic children decreased over the first year then increased but
remained below clinically significant levels (Kovacs et al., 1990).
The mother's maturity also appears to play a role in the impact of
chronic illness on the family and family functioning. The research with
comparison groups suggest that the maladaptive maternal Characteristics
may not be as great in mothers Of chronically ill children as in mothers
of mentally retarded children. Only one study included positive
characteristics of mothers with chronically ill children. In this study
these mothers rated themselves significantly higher on both parenting
and discipline than mothers of healthy children (Halker et al., 1987).
'The timing of the above studies in relation to the diagnosis was

reported in only one of the studies and may have influenced the

23
findings. The importance of time since diagnosis is discussed further
with the literature on coping. The role assumed by the father may also
serve to attenuate some of the stressful effects Of caring for a
chronically ill child experienced by the mothers but was not included in
any of these studies.
5 r s e th

Fathers of chronically ill children have been studied far less
frequently than mothers. As was the case with mothers the focus of the
research has been maladaptation and/or psychopathology. Studies of the
personality characteristics and emotional adjustment Of fathers Of
chronically ill children has resulted in varied findings. In one study
32% of the fathers Of children with cystic fibrosis Obtained scores
suggestive of emotional disturbance on personality tests. These fathers
scored significantly higher than controls on the hysteria, lie,
hypochondriasis, and psychopathic deviance scales Of the HMPI (Gayton et
al., 1977). On a different set Of personality tests fathers Of
diabetics had extreme scores on dominance-submission (Swift et al.,
1967). In a study Of fathers with healthy, chronically ill, or retarded
children, having a chronically ill child was found to have a significant
negative effect on fathers but not as great an effect as mental
retardation. Fathers Of chronically ill children showed significantly
more depression, a lower sense of paternal competence, and a lower level
of gratification in their relationship with the ill child, other
children, and neighbors than fathers of healthy children but not fathers
of mentally retarded children. This stress was greater with younger

children (Cummings, 1976).

24

A relationship between intellectual understanding of the illness
and parental adjustment has been found in some studies of families with
chronically ill children. In families Of children with cancer parental
(mothers and fathers) adjustment was significantly related to education,
intellectual understanding of the disease, occupation, parent-parent
relationships, and parent-child relationships. Intellectual
understanding Of the disease was related to the emotional adjustment Of
both parents, the parent-child relationships, the parent-parent
relationship, and adjustment to hospital routines (Murstein, 1960). A
second study however found that knowledge Of the illness had
differential effects on mothers and fathers. Knowledge of the illness
was negatively related to maternal depression and depression in
hemophiliacs under 15 years of age but there was no relationship between
knowledge and psychological distress for fathers or for hemophiliacs
over 15 years of age (Klein 8 Nimorwicz, 1982). Fathers in these
families participated more in child care and saw their role as head of
household more in terms of care and protection than masculinity (Markova
et al., 1980). Family relationships (parent-parent and parent-child)
appear to play an important role in both parental adjustment and
intellectual understanding of the illness.
53mm

The studies of fathers are limited in number and limited in their
focus on psychopathology. Chronic childhood illness can clearly have a
negative impact on fathers. In comparison with the published norms on
personality tests, fathers Of chronically ill children in two studies
were found to have scores suggestive Of emotional disturbance (Gayton et

al., 1977; Swift et al., 1967). A comparison Of fathers with healthy,

25
chronically ill, and mentally retarded children found that the fathers
of chronically ill children reported higher levels of depression and
lower levels of paternal competence and gratification from interactions
within and outside Of the family than fathers Of healthy children but
not fathers of mentally retarded children (Cummings, 1976). Findings
regarding the relationship Of intellectual understanding of the illness
and parental adjustment conflict. One study found a positive
relationship between intellectual understanding of the illness and the
adjustment of both mothers and fathers (Murstein, 1960). A second study
found this relationship to be present only for mothers (Markova et al.,
1980). Examining the findings of these two studies together suggests
that the parent-parent relationship and the role the father assumes in
the family may be more important factors in parental adjustment. The
resources that the father may bring to the family situation and the
possible personal growth that may result from this experience have not
been addressed by the studies to date.
our r 1 hi

Chronically ill children have been studied more extensively than
their parents or siblings. The methodology of these studies varies but
many are based on maternal report. Fewer studies have_used the child's
self report. Consistent with the research on other family members,.
studies of chronically ill children have focused on identifying
maladaptation and psychopathology. None of the research to date has
examined the strengths of the chronically ill child. For example,
positive self-esteem and adequate psychosocial functioning Of the
chronically ill child could serve as a resource for the family. Because

Of the extent of the literature on chronically ill children, this

26

section will be divided into general adjustment, self-concept, and locus
Of control. For organizational purposes the literature within each area
will be reviewed by diagnostic category.
W

In chronically ill school age children functional status may
influence psychological adjustment. In one study, there was no
Significant relationship between psychosocial adjustment and days in
bed, days hospitalized, or number of hospital days. Number of days
absent from school was Significantly correlated with poor adjustment.
Family composition altered the correlation between each morbidity
measure and psychological adjustment. These relationships are the
weakest with both parents in the home and strongest when the mother is
living with an adult other than the father (Stein 8 Jessop, 1984). In a
five year follow-up study, children with cystic fibrosis followed the
trend toward better adjustment seen among the general population. In
contrast, children with conditions involving the brain, the majority of
whom were classified as severely psychologically impaired, remained at
the same level of adjustment 5 years later (Breslau 8 Marshall, 1985).

The findings from one study Of chronically ill adolescents have
particular relevance to the long term adjustment of chronically ill
school age children. Although most chronically ill adolescents dated
and attended school full time, some did report dating less frequently
and being less likely to be in school full time. Multidimensional
scaling suggests that in moderate to severe illness there is less
adequate social functioning and slower progress into the adult role.
Age, age of onset, age may marry, dating Often, age may become a parent,

close to another, and opposite sex friends do not strongly relate to

27

health status. The majority of the youths appeared psychosocially well.
The mere presence Of a chronic illness eight years earlier did not alone
seem to place the child at risk for subsequent psychosocial problems
(Orr, Heller, Satterwhite, 8 Pless, 1984).

sttjc_f1hrg§1§. The functioning of children with cystic fibrosis
has been examined in a number Of studies. One study found that parental
adjustment ratings Of their children with cystic fibrosis indicated
normal adjustment. These children did show higher but normal scores on
infantile aggression, hyperactivity, inhibition, social withdrawal,
sensitivity, fear, and irritability than their siblings and-healthy
controls. The authors point out that these differences may reflect
parent perception Of the ill child and heightened sensitivity to the ill.
child's state and behavior (Drotar, Doershuk, Stern, Boat, Boyer, 8
Matthews, 1981). Children and adolescents with cystic fibrosis have
shown many adaptational strengths. In a group of preadolescents and
adolescents with cystic fibrosis 85% were in the appropriate school
grade, 69% participated in physical education class, and 81% had future
plans for college and/or a career. Self report indicated good
adjustment in terms of self—concept and lack Of defensive distortions Of
self-image. They perceived adequate social support from family and
friends, with more support from family than friends. High levels of
perceived social support were related to high levels of total self-
esteem (Smith, Gad, 8 O'Grady, 1983). Adolescents with cystic fibrosis
appeared able to maintain good self-concept, to be socially competent,
and perceived they had control Of their health. Females with cystic
fibrosis relied heavily on denial and were behaviorally more compliant.

Males used less denial, showed more behavior problems and immature

28
behavior, and appeared to integrate having a physical disorder into
their self concept more than females. The males did not function as
well socially as male peers or females with cystic fibrosis. Physical
self-concept scores were significantly related to pulmonary function
tests. Locus of control was significantly related to overall
psychosocial functioning (Simmons, Corey, Cowen, Keenan, Robertson, 8
Levison, 1985). Breslau (1983) found no Significant difference in
psychiatric symptoms between children with cystic fibrosis and healthy
controls. In contrast, neurologically and orthopedically handicapped
children showed a significantly increased incidence of psychiatric
symptoms. This suggests that handicapped children may respond
differently to their Situation than chronically ill children. This
would be an important difference since chronically ill and handicapped
children are Often grouped together in theoretical literature, research,
service provision, and education of health care professionals.

Asthma. Examination Of asthmatic children showed that anxiety was
the greatest in an inpatient subsample. In the inpatient subsample
increased debilitation was related tO increased despair over social
debilitation, bad quality Of life, dread of illness, and little
orientation to compliance. All patients showed significant and
comparable reductions in debilitation after hospitalization
(Staudenmayer, 1982). In a second study mothers of asthmatic sons more
frequently described their sons as depressed than mothers of healthy
controls. This view correlated with the asthmatic son's anxiety and
depression. The mothers also showed more depression and anxiety.
Asthmatic boys themselves scored significantly lower than controls on

commitment to parents, overprotection by mother, and overindulgence by

29
mother. There were no differences for mothers with asthmatic daughters
or fathers with asthmatic children of either sex (Meijer, 1976). A
study focusing on the effects of the family on the asthmatic child found
a significant relationship between family adjustment and child
adjustment but neither family adjustment nor family Situation were
related to the severity Of the asthma at two year and ten year follow-up
visits (McLean 8 Ching, 1973). One study compared asthmatic children
and children with cystic fibrosis using parental interview. For
asthmatics it was found that the most important predictor Of
psychopathology was disturbance in family functioning followed by other
family variables, recent life events, and prior undesirable life events.
For children with cystic fibrosis in this study the severity Of illness
was the most important predictor of psychopathology followed by
disturbed parental behavior, paternal emotional disorder, and past
psychiatric history of the child (Steinhausen et al., 1983b). In other
studies of cystic fibrosis and asthma no significant correlations were
found between severity of illness and psychosocial variables (Kashani,
Konig, Shepperd, Nilfley, 8 Morris, 1988; Simmons, Corey, Cowen, Keenan,
Robertson, and Levison, 1987). In both cystic fibrosis and asthma
these studies found that family variables are better predictors Of poor
A adjustment than the presence of the disease.

Qiabe1e§_me111tgs. Studies of children with diabetes have found
both strengths and limitations. On Family Kinetic Drawings diabetic
children showed increased isolation compared to controls. Isolation was
associated with aggression for the diabetic children but not the
controls. Neither general body distortion nor denial of body parts

appeared significantly more Often in the drawings of the diabetic

hi

iii

CC

Fc

30
children (Sayed 8 Leaverton, 1974). Comparison of diabetic and acutely
ill control preadolescents and early adolescents on psychosocial
dilemmas about parent-child issues revealed that the diabetics had
higher focusing, problem-solving, and active understanding scores and
markedly higher overall enabling scores than the acutely ill controls.
Diabetics did express more devaluing and higher levels Of affective
constraining than the controls (Hauser, Jacobson, Hertlieb, NeiSS-Perry,
Follansbee, Holfsdorf, Herskowitz, Houlihan, 8 Rajaparik, 1986). A
group of well controlled diabetics was found to have fewer youths with
interpersonal and noninterpersonal conflicts than a group Of poorly
controlled diabetics or healthy controls, although anxiety and
depression were significantly more frequent by parent reports in the
poorly controlled group. The poorly controlled group was not
Significantly different from the healthy controls. 0f the three groups,
the well controlled group seemed to be in the best mental health
(Simonds, 1977).

Cancer. Research related to children with cancer has focused more
often on the diagnosis or death Of the child than the child's
functioning during the illness. The stage of the illness (diagnosis,
remission, exacerbation, end stage) is Often not controlled in the
'research. Parental reports On children with cancer in various stages
indicated problems related to cognitive development, high anxiety scores
that decreased with age, delinquency scores that increased with age, and
depression scores that were Significantly above normal. Twenty-Six
percent Of the children exhibited profiles indicating problems of
sufficient magnitude for professional intervention (Armstrong, Hirt,

Nesbit, 8 Martinson, 1982). These findings may have been influenced by

31

the stage of the illness which was not described. In a second study
using a drawing task few differences were found between children with
cancer and healthy controls. Age, sex, and group interacted indicating
that all males and healthy females viewed themselves as healthier at
intermediate rather than younger or Older ages, whereas sick females
viewed themselves as healthier at younger and older ages (Burns 8 Zweig,
1980). One study examined children successfully treated for cancer.
These children were not significantly different from healthy children in
perceived self-competence, although a higher percentage of the post-
treatment children reported spending more time alone and having more
friends of ages different than their own (Spirito, Stark, Cobiella,
Dregan, Androkites, 8 Hewett, 1990). The timing (near diagnosis or
death) and focus of these studies make it difficult to identify the
resources that may be present in children with cancer.
W

Aatama. Over the years various maladaptive personality
Characteristics have been attributed to asthmatic children in the
theoretical literature. The research findings however have been
inconsistent. Based on self-report measures one study found that
asthmatics did not differ Significantly on total self concept from the
instrument norms and there were no Significant differences due to
severity of illness. Severe aSthmatics saw themselves as generally less
anxious than an emotionally disturbed group and exhibited a Slight
tendency to see themselves as happier (Heilveil 8 Schimmel, 1982).
Semistructured interviews with asthmatics did not reveal the
hypothesized lack Of emotional expression. The main pattern of reaction

was of directly and indirectly expressed anger and statements of

32
helplessness. There were many expressions of competence and good
feelings. Both Of these patterns were significant. PreadOlescent
asthmatics showed more depression and fewer good feelings than younger
asthmatic children (Viney 8 Nestbrook, 1985). Using both a structured
interview and a self report self concept measure no significant
differences were found between asthmatic and healthy children on
psychiatric symptoms (Kashani et al., 1988).

I A study comparing asthmatic, cystic fibrosis, emotionally
disturbed, and healthy children did find some differences between these
groups of children. Asthmatics and emotionally disturbed children had
significantly lower self-concept scores than healthy controls. The
cystic fibrosis children were between these 2 groups and the healthy
controls. Adequacy and worth as a family member, self-satisfaction, and
acceptance were significantly lower in asthmatics. Physical self scoreS'
were Significantly lower in asthmatics and children with cystic fibrosis
(Margalit, 1982). Another study compared asthmatic, diabetic,_and
healthy children. The ill children scored Significantly higher on’
empathy, emotional responsiveness, and depression. The asthmatic
Children had significantly lower scores on self esteem than the diabetic
and healthy children who had similar scores. The asthmatic children
also had Significantly lower aggression scores than the diabetic
children with the healthy children falling in between (Nelms, 1989).

gyatjg_fihga§1§. In two studies of the psychological testing of
Children with cystic fibrosis and their healthy siblings, no significant
differences were found in self-concept or personality functioning
(Gayton et al., 1977; Simmons et al., 1987). In the study by Simmons
and his colleagues (1987), the cystic fibrosis children and their

33
healthy siblings had Significantly higher self concept scores than the
published norms; however, parents rated their sons with cystic fibrosis
as having significantly more behavior problems than the published norms.
Positive self-concept, personality functioning, and adjustment in
children with cystic fibrosis would serve as resources for the child and
family.

D1abete§_mellitg§. Most Of the controlled studies seem to support
the concept that there are no psychiatric differences between diabetics
and nondiabetics. Good psychosocial functioning has been reported in
diabetics over time. One study found that although self-esteem and body
image were found to be somewhat poorer in school age and adolescence
this seemed to resolve in adulthood (Klusa et al., 1983). Two studies
however found that diabetic children scored significantly higher than
the published norms on the Piers-Harris Self Concept Scale (Evans 8
Hughes, 1987; Saucier, 1984). A three year longitudinal study of
diabetic children beginning at diagnosis found no differences in mental
state, social problems, or intelligence between the diabetic children
and the healthy controls. Diabetics Showed a tendency toward
aggression, higher degrees Of mental activity, emotional lability, and
decreased social contact. They initially Showed a higher degree of
anxiety concerning their own health which decreased over time. The
authors felt the few abnormal patterns were due to the traumatic
experience Of onset (Ahnsjo, Humble, LarssOn, Sattergren-Carlsson, 8
Sterky, 1981). In spite of their normal intelligence diabetic children
did seem to have a distorted perception or incomplete knowledge of their
disease in one study. Low self-esteem when it did occur in this study

was thought to serve as a catalyst for adjustment difficulties

34

(Greydanus 8 Hofmann, 1979). Although poor diabetic control has been
associated with lower self-concept and abnormal psychiatric
classification an increase in the latter has not always been found (Gath
et al., 1980; Swift et al., 1967). Diabetics were found to score more
extremely in both directions on independence-dependence, higher on
latent and manifest anxiety, constriction of sexual identity, extreme
hostility, and lower on self-perception in one study (Swift et al.,
1967). The positive self-esteem and psychosocial functioning found in
the majority of studies of diabetic children are individual resources
that contribute to the family's capability.
W

Research related to locus of control in chronically ill children is
more limited than that on adjustment and self—concept. Although the
findings related to locus of control in chronically ill Children have
been inconsistent, locus Of control appears to have an important
relationship with adjustment in chronic childhood illness. In severe
asthmatics it was found that external locus Of control decreased with
age in better adjusted patients. Children with extreme scores at either
end Of the locus of control scale tended to have emotional and
management problems (Matus, Kinsman, 8 Jones, 1978). Significantly
lower externality scores were found in two studies of school age and
early adolescent children with a variety of chronic illnesses (Simmons
et al., 1987; Steinhausen, 1982). In contrast significantly higher
externality scores have been found in a number of studies of adolescents
with a variety of chronic illnesses compared to healthy controls. The
scores of adolescents with diabetes and cystic fibrosis however were

comparable to the controls. An inverse relationship was found between

care
of cc
fund
with.
self
anxi
ma
non:

Pres

35

self-esteem, social support, and both external locus of control and
anxiety (Kellerman, Zeltzer, Ellenberg, Dash, 8 Rigler, 1980; Evans 8
Hughes, 1987; Smith et al., 1983). In a separate study self-report and
the report of teachers and parents indicated that adolescents with
cystic fibrosis were able to maintain a good self-concept, be socially
competent, and perceived that they had control of their health. Locus
Of control correlated significantly with overall psychosocial
functioning (Simmons et al., 1985). It is possible that the adolescents
with diabetes and cystic fibrosis are assuming more responsibility for
self-care. This may lead to greater internality, self-esteem, and less
anxiety. Locus of control may be influenced more by style Of medical
management (authoritarian versus patient and family aS partners) and
nondisease variables (e.g. developmental level, self-esteem) than the
presence Of a chronic illness. The perception that one has control and
can influence realistic aspects Of his/her life would serve as a
resource. ‘
531mm

Studies of children with a variety of chronic illnesses, physically
handicapped children, and healthy children have supported the normalcy
of the chronically ill child's psychosocial functioning across multiple
measures (Kellerman et al., 1980; Steinhausen, 1981; Tavormina, Kastner,
Slater, 8 Hatt, 1976). These studies do suggest that there may be an
increased risk for maladaptation in chronically ill children but not an
increased incidence. In contrast the physically handicapped children
showed impaired ability to become emotionally integrated into their
environment and a tendency to withdraw (Breslau, I985; Steinhausen,

1981). The chronically ill children's strengths and coping abilities

36
noticeably outweighed their weaknesses. Their self-concept was
Significantly higher than or comparable to the standardized norms in the
majority of studies and there were no consistent significant differences
from the norms on personality testing or locus Of control for
chronically ill children (Tavormina et al., 1976). Although the locus
Of control findings with chronically ill adolescents are inconsistent,
no evidence of psychopathology was found by self report in adolescents
with a variety Of chronic illnesses. The adolescents did report that
the illness disrupted relationships with parents and siblings (Zeltzer,
Kellerman, Ellenberg, Dash, 8 Rigler, 1980).

Parental ratings provide stronger although insufficient support for
the presence of psychopathology in chronically ill children. Parental
ratings in the majority Of studies were completed by mothers. By
maternal rating chronically ill and handicapped children were found to
have significantly more behavior problems and lower social competence
than healthy children (Hallander et al., 1989). Research suggests that
clinical depression affects mothers' perceptions or tolerance of their
child's behavior making it more likely for them to label their children
as disordered or to refer them for treatment (Breslau, Davis, 8
Prabucki, 1988). Higher levels of maternal depression have been
reported in some studies of families with chronically ill children.
Although maternal depression has been associated with mothers' reporting
increased behavioral problems in children with chronic illnesses, one
study found that this relationship was attenuated by maternal employment
(Nalker et al., 1989). Since the time constraints of having a
chronically ill child may limit the mother's opportunity to work, the

relationship between maternal depression, employment, and the mother's

37
reporting increased behavior problems in chronically ill children may
explain in part the discrepancy in findings between studies using
parental report versus teacher report and child self report to examine
the psychosocial functioning Of chronically ill children.

Actual assessment Of the chronically ill children and children's
self reports support only potential risk. Using the Diagnostic
Interview for Children and Adolescents, Kashani and his colleagues_
(1989) found no significant differences in psychiatric symptoms between
children and adolescents with cystic fibrosis and matched healthy
controls. In contrast, using the parent version Of the same interview
schedule with the same sample, parents reported significantly more
symptoms in cystic fibrosis children than the healthy controls (Kashani,
Barbero, Hilfley, Morris, 8 Shepperd, 1988). Self-concept, age-
appropriate locus of control, and coping abilities are resources that
Chronically ill children bring to their families.

e r s

Siblings of chronically ill children have received limited
attention in the literature. Siblings have been used more Often as a
comparison group for the chronically ill child than as the focus of the
research. Much of the research on siblings has utilized maternal report
alone. These studies tend to reveal a more negative perspective on
sibling functioning than those using Sibling self-report and other
sources (Lobato, Faust, 8 Spirito, 1988).

Sibling relationships are characterized by intensity, complexity,
and ambiguity. They span a longer period of time than most other
relationships and include an involvement where children spend hours,

days, and years together. Thus Siblings may have a powerful influence

38
on shaping each other's identity. Siblings serve many roles for each
other including mentor, supporter, comforter, protector, and socializer.
The sibling subsystem as a whole is affected by an ill or handicapped
child. There is evidence that particular children within that system
are especially vulnerable to difficulties. Siblings who are in the
midst Of developmental transitions, have few or ineffective coping 1
Skills, and/or have poor relationships with their parents leading to
inadequate nurturance are at increased risk for psychosocial sequelae.
"Protecting” siblings from information and excluding them from full
participation in family problems increased feelings Of loneliness and
anxiety (McKeever, 1983; Siemon, 1984).

Illness alters the quality Of sibling interaction by complicating
natural combat and conflict among Siblings leading healthy siblings to
question their right to be angry. In addition parents must make
difficult decisions about the distribution Of emotional and material
resources which Often place the good of all family members against the
needs Of one member. Siblings may feel or be short changed in these
decisions leading to a perceived or actual lack of needs being met.
Siblings in the role of explaining, defending, or mediating are torn
between their own needs for friends and protection Of their ill sibling.
Older sisters and siblings Closest in age to the ill child seem to be at
greatest risk for role strains and shifts. An important risk is that
siblings will make reactive decisions about themselves based on
overidentification with the ill child and consequently sacrifice their
own needs and abilities. This may lead to bitterness, resentment, and
‘feelings of lack of control in later years. Having a chronically ill

siblings may also have positive effects including maturity,

39
responsibility, altruism, compassion, and appreciation of their own good
health. Hithin the family these siblings may demonstrate greater
sensitivity to and tolerance of another's point of view, empathy for
their parents, appreciation Of the family's bonds, and more family pride
and loyalty (McKeever, 1983; Siemon, 1984).

Much of the research On siblings of chronically ill children has
focused on maladjustment. Overall there does not seem to be a direct
relationship between a child's illness and sibling psychopathology.
Adverse psychological outcomes that have been reported such as anxiety,
poor peer relationships, somatization, and depression have been more
strongly related to general family factors than illness related
variables. Many Siblings appear to benefit psychologically and socially
from having a chronically ill sibling (Lobato et al., 1988). In one
study siblings of epileptic children were found to be Significantly more
self-directed and had higher self-esteem than the epileptics (Long 8
Moore, 1979). In another study, interviews with siblings of children
with cancer found both positive and negative effects Of having a
chronically ill sibling (Iles, 1979). The Siblings of cancer patients
described losses in terms of disruption of family and peer
relationships, physical changes in the ill sibling, disturbance in
routine family life, and alterations in the environment. The sibling
interviews also revealed gains in empathy for parental needs, cognitive
understanding, respect for the ill Sibling, and self-esteem. The
inajority of these siblings found a peer that they cOuld share the
eXperience with (Iles, 1979).

There has been more research on siblings of handicapped children

tJian siblings of chronically ill children. Siblings of handicapped and

40
(:hronically ill children grouped together have been reported to be
liigher on fighting and delinquency than siblings Of healthy children.
liowever, there was no significant difference between the two groups in
'the number of siblings with serious psychological impairments. A
Agreater impact has been reported on the psychological functioning and
physical health Of older female and younger male siblings (Breslau,
1982; Breslau, Neitzman, 8 Messenger, 1981; Vadasy, Fewell, Meyer, 8
Schnell, 1984). However, these findings have since been found to be
more true Of Siblings of handicapped than chronically ill children
(Breslau, 1982). In an early study, siblings of chronically ill
children who asked disease related questions and were active in extra-
family activities led to increased parental distress (Meyerowitz 8
Kaplan, 1967). If the family attenuated relationships with the broader
community the siblings were aware of this and avoided further loss of
family contact by keeping thoughts, feelings, and questions regarding
the illness to themselves (McKeever, 1983). AS normalization of the
family and chronically ill child's life and Open communication have
increased in emphasis in the medical management of chronic childhood
illness, the parental distress related to these sibling behaviors may
have decreased.

Maternal ratings give a different impression Of these siblings.
Siblings of children with a variety of chronic illnesses were rated by
‘their mothers as being significantly higher on social withdrawal and
irritability than healthy controls (Lavigne 8 Ryan, 1979). In one
study, semistructured interviews and self report questionnaires revealed
no significant differences in self esteem and self appraisal between

siblings of chronically ill children and those of healthy children but

VDAAIX

appr
soci
on c

ill

Der

dei

41

[Darents Of the chronically ill Children perceived the Siblings as having
significantly more behavior problems of a personality nature such as
:shyness and withdrawal than siblings of healthy children (Tritt 8 Esses,
1988). In a study using maternal and teacher ratings, siblings of ‘
children with nephrotic syndrome were rated to be in poorer emotional
and physical health by parents and to have poorer academic achievement
by teachers than healthy controls (Vance, Fazan, Satterwhite, 8 Pless,
1980).
Samar!

Siblings serve an important function for each other in self-
, appraisal, support if parents are disorganized, forming alliances, and
socialization. There is considerably more theoretical literature based
on clinical observation than actual research on siblings of chronically
ill children. Although behavior problems and social withdrawal have
been found using maternal ratings, the majority of studies support good
psychosocial functioning and self concept that is comparable to or
higher than siblings Of healthy children. The majority Of siblings Of
chronically ill children appear able to adjust to the changes that occur
within their families and in some studies have reported positive effects
of this experience. Although at risk for psychosocial problems, most
siblings of chronically ill children do not appear to develop them
(Lavigne 8 Burns, 1981). The adequacy of siblings' self-esteem and
psychosocial functioning will contribute to family resources.

Perception of Demands

The perception Of demands is the family's subjective definition or

perception of the total situation. It includes the subjective

definition of the seriousness of the demands. It also reflects the

uncon‘
progm
and s!
Lavig
as th

(HcCu

42
family's values and prior experience with change and crisis. The
family's subjective definition will usually focus on concrete demands
such as time, money, and fatigue. These definitions are influenced by
‘the affective responses of the family as a unit and individual members.
‘The family's perception can range from seeing the situation as
uncontrollable to seeing the demands as a challenge to be met. The
prognosis, availability of treatment, complex time-consuming management,
and severity of the diseaSe affect the definition (Klusa et al., 1983;
Lavigne 8 Burns, 1981). The family's perception will change over time
as the family copes with and adapts to on-going and new experiences
(McCubbin 8 Patterson, 1983b).

The accuracy Of the parent's perception Of the illness has been
related to a number of factors. Examination of parental perception of
illness severity in children with cystic fibrosis and leukemia revealed
three groups: overestimators, underestimators, and accurate perceivers.
Overestimation of disease severity was associated with increased
psychiatric symptoms, accurate perception with decreased symptoms, and
underestimation was intermediate. Parental distortion of illness
severity was related to the sex of the child, younger children, Older
parents, and lower occupational status (Frydman, 1980). In families of
children with cystic fibrosis, mother's ratings of illness severity
whether accurate or not correlated significantly with limits on family
«Opportunity, financial strain, personal burden, lifespan worries, and
'terminal illness concerns. In terms of total family stress, there was
I10 significant difference in perception of total stress between the
nnothers of children with cystic fibrosis and mothers of healthy control

children (Walker et al., 1987).

Over
Name C
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of socia'
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of the 1
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43

Overreactions Of mothers with children with congenital heart
disease correlated significantly with maternal immaturity, upset family
balance, maternal proneness to anxiety, extra expense, and modification
Of social life (Apley et al., 1967). Maternal perception of congenital
heart disease was a crucial factor in the effect Of illness on family
life. Overestimation and underestimation both related to overprotection
Of the ill child with overestimation having a stronger relationship and
leading to greater disruption in family life. Distortion of severity
was negatively related to the father's occupational status. There was
no relationship between maternal distortion Of illness severity and
maternal age, child age, or number of children. There was no difference
in effects Of distortion by levels Of symptomatic versus asymptomatic
children (Offord 8 Aponte, 1967). Significant misunderstanding of
prognosis has been found between mothers, fathers, and physicians of
children with leukemia. Both parents accurately predicted the child's
perception of the prognosis. Fathers accurately predicted the mother's
perceptions. Mothers however underestimated the father's perceptions Of
the prognosis, thus the fathers saw the prognosis as poorer than the
mothers realized. The physicians significantly underestimated both
parent's perceptions but not the children's perceptions. Children were
more Optimistic than mothers and physicians but not fathers.
Misperceptions and misunderstandings were related to increased stress
(Mulhern, Criso, 8 Camitta, 1981).

Parents Of epileptic children expected more emotional problems,
unpredictable behavior, and emotional reactivity in epileptic children.
Siblings were expected to have better school performance, more sports,

more power of concentration, and a wider choice Of occupations.

imac
stud
seve
Dare
havi
mate
unde

SEW

hav

5311

the
boi
in
as

De

44
Parental attitudes toward epilepsy were positively related to parental
adjustment (Long 8 Moore, 1979). Parental perception of seizure control
was positively related to actual seizure control and parental adjustment
(Austin, MacBride, 8 Davis, 1984)
Summary

Parental perceptions of the illness and demands have an important
impact on the family. Maternal perceptions Of the demands have been
studied the most extensively. Maternal overestimation of illness
severity had the greatest effect and was associated with increased
parental maladjustment and psychological symptoms as well as the illness
having a greater negative impact on family functioning. Accurate
maternal perception was related to decreased parental symptoms and
underestimation was in between. The mother's perception Of illness_
severity whether accurate or not related significantly to the impact of
the illness on the family. Parental perceptions of illness severity
have not shown a consistent relationship with the actual severity of
symptoms. Two studies identified a relationship between parental
distortion Of illness and demographic variables, however, lower SES was
the only demographic variable that was related to illness distortion in
both studies (Frydman, 1980; Offord 8 Aponte, 1967). Parental
perceptions of illness can influence their expectations of the ill child
as well as the healthy siblings (Austin et al., 1979). Differences in
perceptions among family members have been related to increased family
stress (Mulhern et al., 1981). Over time families develop new
definitions of their situation. New definitions usually involve
defining the illness and its severity as well as relinquishing and/or

modifying fantasies and goals for the child's future development

(lad:

chil

ind“
Sin
devl
deer.
den

1'98

m;

3m

45
(Maddison 8 Raphael, 1971). The perceptions Of the ill child and
his/her Siblings and the effect of the children‘s perceptions on parent,
child, and family adjustment have not been examined.
Coping

Hhen existing resources including family structure are not adequate
the family comes to a new shared definition of the total situation.
They search for and agree upon solutions the implementation of which
(coping) leads to restructuring (McCubbin 8 Patterson, 1983b). Coping
is the cognitive and/or behavioral response of the family unit and 1
individual family members in an effort to eliminate and/or avoid
stressors, manage the hardships Of the Situation, and to acquire and
develop social, psychological, and material resources to meet the
demands. The interaction Of demands, resources, and perception of
demands influence the family's demand-capability balance. The family
responds behaviorally and/or cognitively to restore equilibrium. The
problem-solving and coping strategies of the family are aimed at making
changes in the system to meet new demands and restore balance and
organization to the family system. Three initial coping strategies have
been identified. One strategy, ayniganna, is the family's effort to
deny or ignore the stressor. A second, elimination, is the family's
active effort to get rid Of the stressor. A third general strategy,
antimiiatinn, is the family's efforts to accept the demands into the
existing family structure and pattern of behavior. These initial coping
strategies are not always sufficient for achieving equilibrium. Hhen
these strategies are not sufficient three additional coping strategies
may be needed: synengizing which involves the family pulling together
and increasing their coordination as a unit, intenfaning with the

[35

pr
ea
C0

EX

at

C0

fe
re
re

be

f0

:1

De

1 I

46
community to achieve a new fit, and gnmnnnmiaing through realistic
appraisal and willingness to accept a less than perfect solution
(McCubbin 8 Patterson, 1983b).

Vulnerability to stressors is a continuum affected by both
constitutional and acquired factors. For children the behavioral
processes needed for coping and adaptation include seeking information,
maintaining autonomy, and utilizing intrapsychic processes. Coping
consists Of both active efforts and defense mechanisms. Children may
exhibit inactive coping with silent, nonparticipating behavior, pre-
coping with orienting behavior or active coping. Children may use
active coping by attempting to control, resisting, cooperating, and/or
complying with demands (Rose, 1984).

The majority Of the research on coping in families Of chronically
ill children has focused on the time surrounding the diagnosis with
fewer studies examining coping beyond this period. In contrast to the
research on demands, resources, and the perception Of demands, the
research on coping has most often looked at families using data from
both parents rather than isolated family members such as the mother or
the chronically ill child. In addition the majority Of the research has
focused on parental coping not that of the Chronically ill child or the
siblings. Because the primary difference in the research is the time
period examined rather than the subjects, this section of the review Of
literature will be divided into initial reactions and on-going coping.

InltjaLBsactiens '

In a classical theoretical article Solnit and Stark (1961) proposed

a mourning process following the birth of a defective child. This

theory and process of mourning has been supported by a number of authors

47
following the diagnosis of chronic illness in a child (Lavigne 8 Burns,
1981; Maddison 8 Raphael, 1971; Magni Messina, DeLeO, Mosconi, 8 Carli,
1983; McCollum 8 Gibson, 1970; Pacquay-Heinstock et al., 1979; Salk et
al., 1972). The initial reactions to the diagnosis of a chronic
childhood illness have been extensively studied. An initial grief
response to the diagnosis of the chronic illness including shock,
disbelief, and anger has been reported in congenital heart disease,
hemophilia, leukemia, and cystic fibrosis (Apley et al., 1967; Grossman,
1975; Lavigne 8 Burns, 1981; Salk et al., 1972). Initial anger,
decreased self-esteem, and parental resentment were reported by parents
of hemophiliacs (Hattson 8 Gross, 1966a). Mothers Of children with
hemophilia initially felt intensely guilty about being carriers,
depressed, tearful, anxious, and resentful or fearful about having been
punished. The reactions of the fathers varied. The family dynamics
reflected the mothers guilt, the father's ambivalence, and the child's
conflict about movement (Browne, Mally, 8 Kane, 1960). Family guilt
about a child's chronic illness may eventually lead to excessive anxiety
about their healthy children and issues about reproduction (Maddison 8
Raphael, I971; McCollum 8 Gibson, 1970). In a study of families Of
children with cystic fibrosis, differences in perceptions Of the amount
Of stress influenced parental response to the diagnosis of cystic
fibrosis. The cystic fibrosis families initially reported moderate to
severe negative emotional responses as well as negative definitions and
interpretations of the illness (Meyerowitz 8 Kaplan, 1967; Venters,
1981). Parents' anticipation of the severity of the illness at the time
Of diagnosis was significantly related to family functioning. Over time

parents Of children with cystic fibrosis reported giving the illness a

48
more positive interpretation. This interpretation was positively
associated with family functioning (Venters, 1981). In an early study
when leukemia was more frequently fatal, reactions to the diagnosis of
leukemia ranged from loss of control to outward calm and resignation.
Most of the parents suspected that something serious was wrong. The
first days or weeks after the diagnosis the parents experienced physical-
distress, depression, inability to function, anger, hostility, self
blame, and anticipatory grief. From the initial diagnosis through
illness and subsequent death parents manifested all aspects of
anticipatory and subsequent grief reactions including:
intellectualization, irritability, depression, somatization, denial, and
frenzy. Fathers found ways to absent themselves from their troubled
families. Persistent denial was encountered in relatives especially
grandparents but not parents (Binger, Ablin, Feuerstein, Kushner, Zoger,
8 Mikkelson, 1969).

On-going interviews revealed a natural history of parental response
to the diagnosis Of cancer. These responses were Shock, intellectual
acceptance/emotional nonacceptance, denial, and anticipatory mourning.
The anticipatory mourning included somatic signs and preoccupation with
thoughts of the Child. Pathological grief reactions were not prominent
and there were no major depressive reactions. Parents utilized
intellectualization with marked affective isolation. Denial varied
greatly in intensity. The greater the intensity the more removed the
degree of relationship with the child. Parents also exhibited increased
motor activity. Parents actively searched for meaning, mastery, and
competence in the situation (Chodoff, Friedman, 8 Hamburg, 1964). In

families of children with other chronic illnesses denial, anxiety, and

49
mastery attempts led to misinterpretation of explanations, multiple
repetitive questions, searching for information, and intellectualization
(Lavigne 8 Burns, 1981; Maddison 8 Raphael, 1971).

Other studies have found comparable but more intense initial
responses with evidence Of ineffective coping efforts (Chodoff et al.,
1964; Magni et al., 1983). Initially parents may try to eliminate the
stressor through isolation, detachment, decreased affect, avoidance, and
repression (Mattson 8 Gross, 1966a; Mattson 8 Gross, 1966b; McCollum 8
Gibson, 1970). Compulsive caring for the child and performance of
domestic tasks, sleep disturbances, and increased motor activity were
reported in parents Of children with a variety of chronic illnesses
(Lavigne 8 Burns, 1981; Maddison 8 Raphael, 1971; Magni et al., 1983).
Overprotection and overdependence of the child led to overcommitment of
the mother with her adopting a martyr role. These dynamics were related
to decreased family integration in two studies (Friedrich 8 Friedrich,
1981; Meijer, 1976) and to anxiety and depression in the child in one of
the studies (Meijer, 1976).

The effects Of initial family coping with childhood leukemia have
been described in longitudinal studies. In an early longitudinal study
(Kaplan, Smith, Grobstein, 8 Fischman, 1973) 87% Of the families failed
to cope adequately with the consequences of childhood leukemia resulting
in a variety of individual and interpersonal problems that were
superimposed on the stressors created by the disease itself. The most
common maladaptive responses included: denial of the reality of the
diagnosis leading to rejection Of the facts, clinging to the possibility
of misdiagnosis, denying obvious symptoms, taking elaborate precautions

to keep the child unaware of the diagnosis, and fear that the child

50
knowing would lead to a disaster. Parents who refused to accept the
diagnosis occasionally displayed overt and massive hostility toward
members of the health team. In families that achieved adequate coping
parents understood that leukemia was a serious, ultimately fatal illness
(in the early 1970's) involving remissions and exacerbations but moving
progressively toward a terminal state. The family's ability to manage
the illness depended on successful coping by both parents in the tasks
that followed diagnosis. Successful early resolution of the tasks
following diagnosis was considered a most critical coping assignment
because achievement of further coping tasks depended on the
effectiveness of this initial effort (Kaplan et al., 1976; Kaplan et
al., 1973). In more recent longitudinal study of family response to
childhood leukemia, mother's and father's self-reported adjustment to
diagnosis were Significantly correlated. Parents saw little change in
their own adjustment from one year before the diagnosis. Staff ratings
of family coping were generally at the high end of the coping scale.
There was good agreement between nurses, physicians, and mental health
professionals. Typical initial reactions included: anxiety, sadness,
searching for information, focus on intellectual details, and cognitive
but not emotional acceptance (Kupst 8 Schulman, 1980).

It was important for both parents to inform the family about the
true nature of the illness. Communicating the nature of the illness
within the family led to a period Of grief that involved many if not all
members. The diagnosis ushered in a phase Of shared family mourning and
mutual consolidation that included the ill child. It was important for
each family member to have the opportunity to experience grief for the

current and anticipated losses. The family as a group can offer its

51
members the potential Of mutual support and access to its collective
coping experience (Kaplan et al., 1976; Kaplan et al., 1973). Many
losses are associated with a child's serious illness SO the mourning may
extend over a long period and be an intermittent process in which all
family members participate.
The mourning process may also occur in the chronically ill child.
Two initial modes Of coping were found in children with newly diagnosed
insulin dependent diabetes. A subdued reaction with mild sadness,
anxiety, feelings Of friendlessness, irritability, and social withdrawal
was found in 64% of the children. Depressive symptoms that met the DSM '
III criteria for psychiatric disorder were identified in 36% of the
children. An increased incidence of psychiatric reactions was found in
families with lower SES and marital distress. The children's coping was
not directly related to the parents' initial response. Children's
coping took 7-9 months no matter how severe the initial reaction
(Kovacs, Feinberg, Paulauskas, Finkelstein, Pollock, 8 Crouse-Novak,
1985).
mm
In one study Of families Of children with cystic fibrosis, three
patterns of coping were identified in families of children with cystic
fibrosis (McCubbin et al., 1983b). These patterns were: a) maintaining
family integration, cooperation, and an Optimistic definition Of the
situation; b) maintaining social support, self-esteem, and psychological
stability; and c) understanding the medical situation through
communication with other parents and consultation with the medical
staff. Hhen used by the mother all three coping patterns were

associated with the interpersonal relationship dimensions of family

52
life. Mother's coping efforts directed at family integration,
COOperation, optimism, and medical communication and consultation were
associated with family cohesion. Her efforts at maintaining social
support, self-esteem, and emotional stability were associated with
family expressiveness. Two coping patterns used by the father were
associated primarily with the system maintenance dimensions of family
life. Father's coping efforts directed at integration, cooperation, and
optimism were associated with family organization and family
interpersonal relationships. These efforts were positively related to
family cohesion and inversely related to family conflict. His efforts
at medical communication and consultation were associated with both
family organization and family control. Father's and mother's coping
efforts had differential effects on the family. The coping efforts of
both parents had a positive effect on the chronically ill child's
height/weight index and pulmonary function tests. Of the
sociodemographic variables only income and age Of the child with cystic
fibrosis were related to the mother's and father's coping patterns
(McCubbin et al., 1983b). In a second study similar coping patterns and
relationships to family functioning were found in families of children
with cerebral palsy, myelomeningocele, and additional families of
children with cystic fibrosis (Patterson 8 McCubbin, 1983a). Encounters
with other families through clinic and inpatient experiences were used
overtly and covertly for information appraisal, affective appraisal, and
support (McCubbin et al., 1983a). In another study eighty-nine percent
of the families of children with cystic fibrosis reported some degree of
reorganization and decreased negative emotion after one year (Venters,

1981).

53

One study examined specific coping behaviors of parents of Children
with cystic fibrosis. The coping strategies reported most Often were
asking a physician (92%) or a nurse (88%) for information; questioning
other parents of children with cystic fibrosis (63%); Speaking to clergy
(61%); seeking information from others (48%); and questioning friends
and relatives (55%). Nhen they had more concerns than usual parents
reported praying (47%); talking with someone (38%); busying themselves
with other things (27%); crying (26%); asking for help (21%); smoking
(14%); blaming oneself (13%); yelling, screaming, slamming doors (12%);
getting away (24%); exercising (15%); ignoring (12%); alcohol (16%);
medicine (13%); and blaming others (12%). Only 19% of the parents
belonged to an association related to cystic fibrosis. Of those who did
48% went occasionally; 17% never went, and 35% went frequently. One
third of the parents who attended found the meetings helpful while 17%
did not find the meetings helpful (Hymovich 8 Baker, 1985).

Ineffective coping efforts have been reported in families of
children with cystic fibrosis. Adolescents with cystic fibrosis
reported inadequate communication between mothers and fathers. They
described their mothers as overprotective and fathers as withdrawn. It
seemed the closer the mothers were to the CF adolescent the more distant
the fathers. Adolescents with mothers who worked outside of the home
were better adjusted (Boyle, diSant Agnese, Sack, Millican, 8 Kulczycki,
1976). Families of children with cystic fibrosis reported difficulty
maintaining a relationship with a potentially dying child. Anticipatory
grief fluctuated with denial of prognosis. Parents expressed difficulty
meeting the physical and emotional needs of the ill child while meeting
the needs of other family members (McCollum 8 GibsOn, 1970).

54

Sharing burdens within and outside of the family was significantly
related to family functioning (Venters, 1981). Role changes for
siblings however can increase the demands for independence and lead to
feelings of anxiety and abandonment (Lavigne 8 Burns, 1981). When
parents perceived the attitudes of friends, relatives, and/or the
community as negative they responded by withdrawing from these
relationships (Maddison 8 Raphael, 1971; McKeever, 1983). In parents of
children with leukemia and cystic fibrosis, crisis support, neighborhood
interaction, and community participation had a direct effect on parental
psychiatric symptoms (Frydman, 1981). Thus withdrawing from
extrafamilial relationships as a coping response could have negative
consequences for the family.

Summary

The research on coping supports an initial grief process in
response to the diagnosis of a child's chronic illness. This grief
process may explain the inconsistent findings related to depression in
parents of chronically ill children as well as some Of the other
findings of emotional disturbance. Studies done during this initial
grief process would be more likely to find an increased incidence Of
depressive symptomatology and other behavior indicative of emotional
maladjustment in a nongrieving population. After this initial period
the majority of families appeared to develop effective coping strategies
that facilitate on-going adaptation and development. The literature
does suggest however that the effectiveness of the ongoing family
adaptation is related to the family's effectiveness in dealing with the
initial stressors. The use Of Open communication within and outside of

the family, acquisition and maintenance of social support, and

55
management of the medical situation were important coping skills for
these families. The use of these coping behaviors by mothers and
fathers appears to have differential effects with the mother's efforts
having a greater effect on the interpersonal dimensions of family
functioning and the father's efforts having a greater effect on the
system maintenance dimensions. Clarity of roles and Open communication
within the family facilitated effective coping. Outside Of the family,
crisis support, neighborhood interaction, and community participation
facilitated effective coping. Over time families often reorganized
their values and goals in life developing a philosophy of life that
placed more emphasis on human values (e.g. love and sharing) than future
goals (e.g. academic achievement, athletic prowess, occupational
opportunity). They could thus develop a sense of worthwhileness of the
child's life despite the disease imposed limitations (Lavigne 8 Burns,
1981). Defining the illness situation within an existing philosophy
(e.g. biological, religious) was positively associated with family
functioning (Venters, 1981).
' Adaptation and Family Functioning

Adaptation is a continuous process that reflects family functioning
in the areas Of family cohesion and organization, sense of control over
environmental influences, and promotion of individual member and family
development. Family adaptation to stress involves at least two major
components. First, the family must have or develop such internal
resources as integration and adaptability in order to withstand social
and psychological stresses. Second, the family must have or develop a
range of coping behaviors directed at strengthening its internal

organization and functioning, at procuring community and social

56
supports, and in some cases at diverting, reducing, or eliminating the
sources of stress. The development of interpersonal relationships
outside the family system appears to be an important coping pattern and
contributes to self-development and self—esteem. In severely stressful
situations family members must devote effort to maintaining integration
and stability. Spiritual support contributes to maintaining the family
unit, individual Self-esteem, and serves as a reference point for social
norms and expectations which may guide families in stressful situations
(McCubbin, 1979). The clarity Of community norms and expectations
regarding family behavior under stress also influences the vulnerability
of families under stress. The degree of family adherence to community
norms and the strength of the family's interpersonal relationships is
inversely related to vulnerability under stress.

Family functioning has not been examined comprehensively in
families with chronically ill children. It has been assessed either as
a generic-concept that is rated for general quality or a Specific aspect
Of family functioning has been singled out in the study of other
variables. Examination of these studies together however does provide
insight into the relevance of family functioning in the on-going
adaptation of families to chronic childhood illness as well as the
effects of some of the specific aspects of family functioning. Poor
quality of family life as measured by an index of family functioning was
found to place the chronically ill child at the highest risk for
psychological maladaptation (Pless et al., 1972). In addition, if the
chronically ill child is Older and his personality and role in the
family have developed, an even greater sense Of loss may be experienced

by all family members (Steinhauer, Mushin, 8 Rae-Grant, 1974). The

57
increased emotional, time, and financial demands resulting from the
illness can lead to decreased family cohesion with relative neglect Of
siblings as well as sibling rivalry and guilt if the child dies. The
husband also may receive relatively less emotional and practical
attention if the mother is the primary caregiver (Maddison 8 Raphael,
1971). The greatest psychological or social problems are likely to
develop when serious chronic illness occurs within an already disturbed
family situation (Steinhauer et al., 1974).

In a 2 year follow up of families with a leukemic child current
family adjustment was within normal range. Multiple, pre—existing
marital, family, and/ or emotional problems were a common factor in the
9 of 60 families who had below normal family coping scores at 6 months
and 2 years. Sixty-five percent of the families were considered to have
good marital and family relations. The predominant emotional reactions
were anxiety and apprehension, sadness with a depressive affect,
cheerful affect, and anger. The most difficult times as reported by the
parents were diagnosis, medical procedures, feelings of helplessness,
dealing with the reactions of other people, and watching changes in the
child's physical appearance (Kupst, Schulman, Maurer, Honig, Morgan, 8
Fochtment, 1984). Follow-up of the same families 6-8 years post-
diagnosis revealed that the families' coping continued to be high and
appeared to increase. The adequacy of coping at diagnosis was
significantly related to coping Six years later. Families who coped
well tended to have better family support, higher quality Of marital
relationships, fewer concurrent stressors, and more Open communication
(Kupst 8 Schulman, 1988). In a second longitudinal study,

classification of early coping reactions in families of children with

58
leukemia were also found tO be predictive of later adaptational level
(Kaplan et al., 1976). Powazek and his colleagues (1980) studied
families of Children with leukemia longitudinally. One year after
diagnosis 33% of the mothers were highly anxious, 17% showed high
depression scores, 11% high psychoticism scores, and 44% high neurotic
maladjustment scores. These levels were lower than at the time of
diagnosis. Six months after diagnosis less than 11% of the children
were highly anxious. Forty-six per cent Of the patients discussed the
fear or possibility Of death. Fifty-five per cent of these children
talked to their mother; 18% to their fathers; and 27% with other
relatives or friends. After one year families were well educated
regarding leukemia and its treatment, used the word ‘cancer' or
‘leukemia', and told family and friends about the disease. The illness
was not kept secret or denied. All families knew that leukemia was
serious, chronic, and sometimes fatal. Serious psychiatric disturbance
was not apparent in the first year although there were increased scores
on anxiety, depression, and occasionally disturbed thinking. Mothers
reported that family disruption declined in 6 months and the majority of
the patients returned to prior level of functioning (e.g. school).
Approximately 20% of the parents reported increased use of alcohol and
tranquilizers. Adaptation seemed particularly difficult for fathers and
siblings. Hhile 75% of the mothers discussed the disease at home only
54% Of the fathers and 26% of the siblings did so. Lack of discussion
by fathers and siblings may reflect a lack Of open, effective family
communication. For fathers and siblings this could result from less
participation in the treatment process. Siblings Showed evidence of a

variety of behavior problems including: fear of going to school, fear

59
of being left alone, achievement and behavior problems in class,
increased anger and jealousy toward the ill sibling, and somatic
complaints. The siblings understanding of the disease process was
noticeably deficient (Powazek et al., 1980).

Changes in boundaries, roles, values, and patterns of interaction
affect family functioning. Families who used Open communication prior
to the diagnosis tended to maintain an Open communication style within
the family and in relationships outside of the family. In contrast a
blurred, closed communication style tended to be exacerbated by stress
with members withdrawing into themselves or subgroups. This resulted in
a fixed, anxious atmosphere characterized by confusion and diffuse
depression. The family system was fixed in a closed way of functioning
characterized by withdrawal from the outside world and consequent
affective and intellectual impoverishment (Pacquay-Neinstock et al.,
1979). Open family boundaries and communication style would enhance the
availability of support to the family and its members whereas closed
family boundaries and communication style would decrease the amount Of
available support. In families with diabetic children, intact
boundaries between 2 generations, family stability, and the capacity of
family members to enjoy each others company was positively related to
diabetic control (Klusa et al., 1983). The findings of these studies
support the importance of clear, open communication and boundaries in
family adaptation.

Family communication style has been examined in families Of
children with a variety of chronic illnesses. Using a family problem
solving task, families of epileptics Showed increased conformity to

group Opinion, greater acknowledgement of interruptions, less conflict,

60

and more rapid decision-making than matched controls. The mothers in
these families were more dominant than the fathers and the family
structure was a more rigid dominance hierarchy than the control
families. The strength Of their problem-solving skills may have been in
the clarity of the roles, boundaries, and patterns of interaction
(Ritchie, 1981). In one study families Of asthmatic children scored
significantly lower on family expressiveness than matched healthy
control families. This may reflect the extent to which feelings are
openly and directly expressed and could negatively affect the level of
adaptation (Hilliard, Fritz, 8 Lewiston, 1982). In a second study of
families of asthmatics in a standard communication Situation one third
of the asthmatic's parents communicated ineffectively, could not take
each others perspective, seemed to listen but did not, and were
egocentric. In comparison with parents of children with congenital
heart disease the couples with asthmatic children seemed to have a high
tolerance for vague, unclear communication with the pretense that they
understood. They demonstrated high anxiety for open conflict and did
everything possible to avoid conflict (Nikran, Faleide, 8 Blakar, 1978).
These findings are consistent with the subset of families with asthmatic
and diabetic children that Minuchin and his colleagues (1975) identified
as ‘psychosomatogenic.' This subset of families develops a manner of
functioning after the disease onset that maintains the symptomatology.
Psychosomatogenic families are characterized by enmeshment, rigidity,
overprotection, and poor conflict resolution.

Family factors involved in the adaptation to cystic fibrosis have
been described. Mother's rating of illness severity was positively

related to limits on family Opportunity. The greater the severity of

61

the illness rating the greater the sense of reward mothers derived from
caretaking tasks (Nalker et al., 1987). These findings suggest that the
mother's overestimation Of illness severity may lead to over involvement
in child care with a consequent decrease in family cohesion and .
communication. Gayton and his colleagues (1977) found no significant
differences in family adjustment and family satisfaction between
families of children with cystic fibrosis and healthy controls. The
family's perception of severity again seemed to be a crucial factor.
Over time parents of children with cystic fibrosis reported giving the
illness a more positive interpretation. This re—interpretation was
associated with positive family functioning and adaptation. The ability
to share the burdens within and outside of the family which is related
to clear, flexible boundaries was also positively related to family
functioning (Venters, 1981). t

A 13 year longitudinal study examined family and individual factors
that influenced the outcome for children with end stage renal disease.
Vulnerability to poor outcome was strongly increased with the following
factors: poor family support, complex medical course, low income and
other practical problems, and the experience of renal failure and
treatment for end stage renal disease occurring in adolescence. In the
patients, vulnerable personality before the illness including poor self-
esteem and high anxiety related to poor outcome. Poor family
functioning with family disorganization was also strongly related to
poor outcome (Korsch, 1985). Thus a large number Of the factors
influencing poor outcome in end stage renal disease were related to the

family functioning.

62

Studies Of children with diabetes revealed that their adaptation
was related to a number Of family functioning factors. The perceived
self competence Of diabetics was significantly related to the family
dimensions of organization, independence, and activities. Family
orientation toward personal growth and family system maintenance
predicted multiple types of diabetic adjustment and total diabetic
adjustment (Hauser, Jacobson, Hertlieb, Brink, 8 Nentworth, 1985).
Based on parental report a significantly greater proportion (75%) of
families of adolescent diabetics fell in the structured or rigid range
of adaptability. This style of adaptability was Significantly related
to poor metabolic control of diabetes of Short duration. The
relationship between family adaptability and metabolic control was
attenuated as the duration of the diabetes increased (Hanson, Henggler,
Harris, Burghen, 8 Moore, 1989). Although families of diabetics do not
appear to differ from families Of healthy children on family cohesion,
cohesion has shown a significant relationship to metabolic control
(Evans 8 Hughes, 1987; Hanson et al., 1989).

A variety of family dynamics and styles of family functioning were
found in studies of families of hemophiliacs. In one study the
families' functioning reflected the mother's guilt, the father's
ambivalence, and the child's conflict about movement. These mothers
constantly questioned their ability to rear children and carried out the
suggestions of the doctor literally and to extremes. For the mothers,
activity was seen as equivalent to injury and school was thus seen as a
threat. Although most of the children were overtly docile and passive,
they did rebel in subtle ways against restrictions. Anticipation of

increased activity or independence was the theme most commonly

63
associated with spontaneous bleeding episodes. The reactions of the
fathers in this study varied (Browne, et al., 1960). These findings
suggest that the interaction of the mother's feelings with the child's
behavior and symptoms has an important influence on family functioning.
While a second study Of families of hemophiliacs found that some
families reported withdrawal of the husband and_decreased attention for
the other children (Salk et al., 1972), a third study found that fathers
of hemophiliacs participated more in childrearing than fathers of
healthy controls and saw their role more in terms of care and protection
than masculinity. Fifteen of the sixteen couples reported that having a
Chronically ill child brought them closer together (Markova et al.,
1980). The inconsistency of these findings support the impression that
the presence of a chronic illness alone does not predict a Specific
pattern Of family functioning and the pattern of family functioning is
not disease specific.

Cross-disease studies have examined a number of characteristics of
chroniCally ill children and their families that relate to family
functioning. One study Of chronically ill adolescents provides some
insight into the longer term implications of family functioning for
chronically ill children. It was found that chronically ill adolescents
frequently did not have their drivers license. In some cases this was
due to their illness but in others it was due to parental refusal.

There were no significant differences between the ill and well
adolescents on psychosocial items including: intactness Of family,
satisfaction with parents and self, types and number of outside
interests, number and type Of school activities, number and reported

' closeness Of friends, days missed from school, or ability to talk to

64
adults. Fewer of the chronically ill adolescents perceived home life to
be good. They reported doing things less frequently with their families
and Shared problems more Often with their siblings than the healthy
adolescents did (Orr et al., 1984).

In 1962 Olshansky proposed that parents who have a mentally
defective child experience chronic sorrow that varies in intensity
across time. This theory appears applicable to many long term health
problems in children including chronic illness. A later review Of this
theory supported chronic sorrow and suggested that final acceptance may
not be realistic (Kornblum 8 Anderson, 1977). Many parents Of leukemic
children report periodic onset of depressive symptoms associated with
the child's hospitalization or appointments. During remissions most
parents attempted to lead as normal a life as possible. They
acknowledged the urge to overindulge the child. Changes in work habits
and social lives indicated the parents were not entirely successful.

The occurrence and effects Of cyclical upheaval cannot be assessed by
one time cross-sectional studies (Eiser, 1979). In one study parents of
chronically ill children reported increased demands on time and energy
and pressure to take ‘proper' care of the ill child. They expressed an
increased need for approval as a ‘good' parent. The parents scored
lower on parental confidence and extroversion and higher on social
desirability and neuroticism than the standardized norms (Pacquay-
Heinstock et al., 1979). Over time families reorganized their values
and goals in life and were thus able to develop a sense Of
worthwhileness of the Child's life despite the disease imposed
limitations (Lavigne 8 Burns, 1981).

65
Summary

Adaptive behavior is more likely in families that are intact and
well integrated, families with Open channels of communication, families
with clear but flexible roles, boundaries, authority and status
structures, and families that have successfully met past disasters. In
some studies, coping responses such as overinvolvement in the care of
the ill Child resulted in decreased family communication and
communication. Lack of family organization as well as ineffective
communication may impair the family's ability to share both the
instrumental and psychosocial demands Of having a chronically ill child.
The strength of the family's interpersonal relationships both within and
outside Of the family is positively related to a family's regenerative
powers (McCubbin, 1979).

Conclusion

The impact of chronic childhood illness on the family is extremely
variable. A variety of methodological issues make it difficult to reach
definitive conclusions about family adaptation. The majority Of the
studies have focused on maladaptation of the family or specific family
members. Furthermore, conclusions regarding the family were Often based
on data from one parent usually the mother. In an increasing number of
the more recent studies data from both parents was utilized. Data from
the chronically ill child were included only in those studies where the
affect of family variables on the chronically ill child's psychosocial
adjustment or disease management was the focus of the study. Data from
siblings were rarely included. Studies of coping and adjustment in
families with chronically ill children have focused primarily on the

initial response to the diagnosis and specific family characteristics at

66
one point in time (e.g family expressiveness). The research to date
does provide insight into some of the issues which influence family
adaptation. Although the medical treatment for different diseases is
quite different, the other needs and problems Of the chronically ill
children and their families have more features in common than features
that distinguish them. Families and children have both generic and
specific needs. The research supports that family adaptation is neither
disease specific nor specific to the presence Of a chronically ill child
alone.

In both families with healthy children and families with
chronically ill children family adaptation appears to be a generic
process that is'a function Of the relationships among demands,
resources, perception Of demands, coping skills and attributes of family
functioning such as structure and communication. The model (Figure 1)
for this study is proposed as a means for conceptualizing the family
adaptational process and investigating factors which may influence the 1
process and the relationships among the factors. The present study
focuses on describing the adaptational process rather than the
identification of psychopathology and maladaptation. Since family
responses during the initial diagnostic period have been described in
previous research, this study will examine family adaptation after the
diagnostic period. In order to obtain a more comprehensive view of the
family, data from the parents, the chronically ill children, and
siblings will be used. In this study families of chronically ill
children and comparison families with healthy children will be used to

test the model. Differences between the chronic illness families and

the

8X3

67
the comparison families on each Of the model components will also be

examined.

CHAPTER 2 METHODOLOGY
Sample

The sample consisted Of 45 families. There were 28 families with a
school age (8-12 years) child who had been diagnosed with a chronic
illness for at least one year and 17 comparison families with healthy
children. There were 8 families of children with asthma, 6 with
congenital heart disease, 8 with cystic fibrosis, and 6 with insulin
dependent diabetes mellitus. In the comparison families the children
had no known physical abnormalities or developmental deficits. Families
with chronically ill children were recruited through the pediatric
subspecialty clinics in the Department Of Pediatrics and Human
Development at Michigan State University. Recruitment was limited to
these clinics in an effort to control the philosophical approach to the
medical management of Chronic childhood illness. These clinics
encourage patient and family participation in management which may not
be true in other settings and could influence the family's adaptation.
Due to the limited number of chronically ill children in some of the
diagnostic categories all families coming to the respective pediatric
subspecialty clinic who met the criteria were asked to participate
successively. The comparison families were recruited through
university, neighborhood, and community agency announcement.

Family was defined as the parent(s) (biological, adoptive, or step—
parents), the target child, and siblings (biological, half, or step-
Siblings) eight years Of age or older, who were living currently in the
home. The minimum age of eight years was selected in an effort to avoid

the cognitive transitional period that generally occurs between 5—7

68

69
years and thus facilitate the children's ability to understand and
respond to the instruments. Four families were randomly selected from
each of the four chronic illness categories for purposes of matching.
The comparison families were matched to one of the selected chronic
illness families on: age, sex, and birth order of the target child;
number Of parents in the home; approximate family size, and income.
Birth order of the target child was matched On Oldest, middle, or
youngest. Family size was matched for 1-2 children, 3-5 children, 6 or
more children. Income was matched for <$20,000, $20,000-34,999,
$35,GOO-49,999,550,000-74,999, and >575,000. Thirteen of the comparison
families were able to be matched to the randomly selected chronic
illness families. The other four comparison families were matched to
four non—randomly selected chronic illness families that were evenly
distributed across the diagnostic categories. The final sample
consisted of 160 subjects. In the 28 target families there were 47
parents (28.mothers, 19 fathers), 28 target children, and 27 siblings
(17 children, 10 adolescents). In the 17 comparison families there were
28 parents (17 mothers, 11 fathers), 17 target children, and 13 Siblings
(4 children, 9 adolescents).

Chi square analysis revealed no significant differences between the
chronic illness and comparison families on the target child -
Characteristics (age, sex, and birth order), family characteristics
(number of parents, number of children, and income) or the parent
characteristics Of father's education, occupation, or full/part time
work. Mothers in the comparison families had Significantly more
education, were Significantly more likely to work outside of the home

and in graduate professional positions than mothers in the chronic

70
illness families. Significantly more mothers in the comparison group
worked full time. Specific information describing the sample
characteristics is provided in Table 1 (Family Member Characteristics)
and Table 2 (Family Characteristics).
Procedures

All procedures were the same for the chronically ill families and
the comparison families. Families meeting the criteria received a
letter explaining the study and inviting their participation. The
letter contained a return postcard indicating willingness to
participate, most convenient times for participation, and family
composition. Families who returned the postcards received a follow-up
phone call from the investigator to answer any questions and schedule an
appointment for a home visit with the entire family. At the home visit
the study was explained to the entire family, questions answered, and
informed consent Obtained. Sociodemographic and illness demographic
(for families with chronically ill children) information were obtained
from the parents by interview. Each family member was then asked to
complete the appropriate instruments. The investigator answered
questions and assisted the younger children with completion Of the
instruments.

Instruments

The instruments used to assess the model constructs follow. Some
of the instruments were revised in order to be age-appropriate. These
revisions are described later. 6

Demand;
Demanga were assessed by the Life Events Questionnaire (LEO), the

Hassles Scale, and the Uplifts Scale (Kanner, Coyne, Schaefer, and

71

 

Table 1
F l h
ILLLOJer'a latest mm
Target Child Mean Mean
Age 9.93 yrs. 10.45 yrs
Sex 8 It I! 8
female 13 46 8 47
male 15 54 9 53
Birth Order Mean Mean
Oldest Middle
Youngest 8 29 7 41
Middle 4 14 2 12
Oldest 11 39 4 23.5
Mother Mean Mean
Education some college college
less than high school I 4 0 0
high school 6 22 O 0
business, trade,
jr. college 5 18 2 13
some college 10 37 l 6
college 4 15 9 56
postgraduate 1 4 4 25
Occupation Median Median
trade, clerical graduate
technical professional
no work outside home 9 33 2 12
unskilled labor 2 7 0 0
trade, clerical,
technical 7 26 4 23
sales 3 11 0 0
management 1 4 0 0
graduate professional 5 19 11 65
Amount of work Mean Mean
full—time full-time
none outside Of home 9 33 2 12
full-time 8 30 12 70
part-time 10 37 3 18
Father Mean Mean
Education some college college
less than high school 1 4 0 0
high school 5 22 0 0
trade, business,
jr. college 4 17.4 2 18

72
Table 1 (cont.)

Mable lame: COTOOLLH on
_ 8 _ 25
some college 5 22 l 9
college 4 17.4 3 27
postgraduate 4 17.4 5 46
Occupation Median Median
no work outside home 1 4 0 0
unskilled labor 3 13 0 0
trade, clerical,
technical 7 30 6 50
sales 5 22 0 0
management 2 9 l 8.3
graduate professional 5 22 4 33.3
postgraduate prof. O 0 1 8.3
Amount of Mark Mean Mean
full-time full-time
no work outside home I 4.3 0 0
full-time 21 91.3 12 . 100
part-time 1 4.3 0 O

 

Table 2
family tharagterigtigg

73

 

1811121:

Number of Families

Number Of Parents
one parent
two parents
one parent plus
sign. other
mothers
fathers

Number of Children
one child
two children
three children
four children
five children
Six children

Income

under $12,000
512,000-24,999
535,000-34,999
$35,000-44,999
$45,000-54,999
$55,000-64,999
S65,000-74,999
over $75,000

Hmwwam

Nwawwmmm

p—a
O
NV

S35,000-44,999

17

12

17
11

OOH-hm-h

NMHHHw-ho

29
71

100

23.5
47
23.5

6

O

0

$45,000-54,999

 

74
Lazarus, 1981). The Life Events Questionnaires were based on the Life
Experiences Survey (LES)(Sarason, Johnson, 8 Siegel, 1978) with some
questions added from the Children's Life Event Record (Coddington,
1972). The Life Experiences Survey (Sarason et al., 1978) was designed
to eliminate some of the consistent criticisms of previous life stress
measures by including a list of events experienced with some degree of
frequency, allowing the respondents to rate the desirability or
undesirability of the event, and allowing the respondents themselves to
rate the personal impact Of each event experienced. In his
comprehensive review of methodological issues in life events research,
Zimmerman (1983) found that group-derived weights generally do not
improve the stress-illness relationship. There was substantial evidence
of interindividual and intergroup variability in the perception of an
event's impact. Assessment of this variability in perception is of
particular importance in the current study in order to examine the
-family's nengentinn_nt_tne_gemand§. There are also indications that
individually derived weights are more highly correlated with psychiatric
symptoms than consensus weights (Zimmerman, 1983). Zimmerman (1983, p.
360) concluded that ”a largely unrecognized value of subjective weights
may be in their ability to identify individuals at high-risk for
becoming ill after an event has occurred." Thus the design of the LES
was a major reason for its selection for this study.

The reliability and validity of the LES are comparable with other
life events questionnaires (Sarason et al., 1978; Zimmerman, 1983). The
psychometric properties of the LES have been examined for the direction
(positive or negative) and intensity of the impact but not the frequency

of events. Although together the life events items provide a

75
quantitative measure Of major stressors, the individual life events are
not necessarily stably or highly inter-related. For example, the ‘death
of a family member' and a family member ‘being in jail' may not be
highly or consistently correlated. This instability of inter-item
correlations makes internal consistency a less meaningful measure of
reliability with life events measures than test-retest reliability which
examines the consistency of events reported over time. Test-retest
reliabilities of the LES at 5- and 6- week intervals were .19 and .53
for the positive change scores; .56 and .88 for the negative change
scores; and .63 and .64 for the total change scores (Sarason et al.,
1978). The validity of the LES has been demonstrated with a number of
outcome measures. Total and negative change scores have shown
significant correlations with state and trait anxiety, lower grade point
average, self—rated depression, and measures Of personal adjustment
(Kale 8 Stenmark, 1983; Sarason et al., 1978).

Instruments assessing life events have been designed for adults in
studies of the epidemiology Of the stress-illness relationship. The
Children's Life Event Record (Coddington, 1972) was the first such
instrument developed to assess life events in children. Although
research that includes the assessment of life events in children is not
frequent, the Children's Life Event Record has been the instrument used
most Often. It was designed for parents to complete. The items were
developed from a survey of professionals working with children. To
examine life events in the family for the present study it was felt that
the LES approach Of having the children themselves identify which events
had occurred and rate their impact was important to retain. In order to

be age appropriate the LES needed to be supplemented with life events

76

that are specifically relevant to the children and adolescents in the
family. The items on the Children's Life Event Record were compared
with those on the LES and the events not previously covered by the LES
were added. Children as young as nine years of age have demonstrated
the ability to make distinguishing judgments of perceived stressfulness
of life events on 5 and 7 point Likert scales. These judgments often
differed from those Of professionals and adult respondents (Brown 8
Cohen, 1988; Yamamoto, 1979). The children's subjective ratings of
perceived stressfulness that have occurred in their family are
considered to be of particular value when examining the family's
nententinn_n£_tne_demang§ in the present study.

Three forms Of the Life Events QuestiOnnaire were used in this
study: child (8yrs.-12yrs.), adolescent (13yrS.-I9yrs.), and adult.
The first 46 questions are the same on all three forms. Questions 47-50
are identical on the adolescent and adult forms. These questions relate
to sexual difficulties, abortion, and outstanding personal achievement.
The adult form has 3 additional questions (51-53) which are related to
major financial issues. The Life Events Questionnaires ask which events
happened in the family in the past 6 months, to whom it happened, and
what that event was like for the respondent. The respondent rates the
impact of the event on a 5 point scale from Very Negative to Very
Positive (Very Bad to Very Good on children's form). The wording and
print size on the children's form were adapted for easier reading. For
the purposes of this study the 46 items that are present on all three
forms of the Life Events Questionnaire were used for the analysis.

‘The fla§§1e5_and_unlitt§_§gaie§ (Kanner et al., 1981) are designed

to assess positive and negative experiences that characterize everyday

77
transactions with the environment. Age-appropriate adaptations were
made in the format and wording Of the adult scales to develop the child
and adolescent forms used in this study. The respondent is asked to
indicate which hassles and uplifts he/she experienced and rate each
experience on a 3 point scale from somewhat hassled to very hassled
(Hassles Scale) or somewhat pleasurable to very pleasurable (Uplifts
Scale). There are 118 potential Hassles and 134 potential Uplifts on
the adult form. The children's form contains 96 Hassles and 119 Uplifts
derived from the adult form. The adolescent version contains 111
Hassles and 129 Uplifts drawn from the adult forms. Thus there were 96
Hassles and 119 Uplifts responded to be all family members. For
purposes of this study the Hassles and Uplifts responded to by all
family members were used in the analysis.

The psychometric properties of the Hassles and Uplifts Scales were
determined with adult samples from early through middle adulthood
(Kanner et al., 1981). AS was true for the life events measure,
individual items on the Hassles and Uplifts Scales may not be
consistently or highly inter-related making examination Of internal
consistency less meaningful than test-retest reliability. Test-retest
correlations of each monthly administration with every other
administration over a ten month period were calculated. For the Hassles
Scale the average correlations were .79 for frequency and .48 for
intensity. For the Uplifts Scale the average correlations were .72 for
frequency and .60 for intensity (Kanner et al., 1981). The Hassles and
Uplifts Scales were positively related to each other. The correlation
of their frequency scores was .51 and of their intensity scores .28.

This relationship may reflect either a common response style or a

78
tendency for people who experience many hassles to also experience many
uplifts (Kanner et al., 1981).

The validity of the Hassles and Uplifts Scales has been examined.
Frequency Of hassles was related (r-.34) to negative affect and
psychological symptoms. Intensity of hassles was not significantly
related to affect or psychological symptoms. Frequency and intensity of
uplifts were related to positive affect. The correlations were .33 and
.25 respectively. Hhen these data were examined by gender, uplifts
frequency and negative affect tended to be negatively correlated for men
but positively correlated for women. This suggests that for women
Uplifts may contribute to the level of stress. The positive
relationship between uplifts and measures of stress for women was found
throughout the analysis (Kanner et al., 1981).

Hassles and Uplifts intensity scores were not Significantly related
to life events. There was a significant positive relationship between
life events that occurred during the 10 month study and frequency of
hassles for women. This relationship was not significant for men. Hhen
significant relationships did occur life events were positively related
to hassles and negatively related to uplifts for men. For women life
events were positively related to both hassles and uplifts. In
regression analyses hassles were a more powerful predictor of
psycholOgical symptoms than life events. Hassles continued to
contribute significantly to the variance in psychological symptoms when
the variance due to life events was partialled out. HasSles were also a
better predictor of psychological symptoms than uplifts for the total

sample as well as for men and women separately. These results suggest

79
that hassles contribute to psychological symptoms independent of major
life events (Kanner et al., 1981).
W

£eneentinn_et_eemand§ was measured by using the intensity responses
of the family members to each of the events identified on the Life
Events Questionnaire and on the Hassles and Uplifts Scales. The
psychometric properties related to intensity have been discussed with
the respective scales.

W

Beannnee; were assessed by administering Harter's §e1£_£eneentinn
Ennfilee for Children, Adolescents, and Adults (1982b, 1985, 1986a,
1986b, and 1988), the Mnitidimenaienai_Leen§_nf_§entnni_§eaie (Levenson,
1981) for parents, the Nowicki-Strickland Leene_nf_gnntnel_§ea1e (1973)

for children and adolescents, and the Eami1y_inyenteny_et_fle§nnnee§_ten
Management (FIRM) for parents (McCubbin and Thompson, 1987). The fielt

Eereentinn_£nnfi1e§ for Children, Adolescents, and Adults were developed
by Susan Harter (1982a, I982b, 1985, 1986a, 1986b, 1988). All three
profiles use a structured alternative format which allows for four
potential choices. The Se1t_Eeneentinn_£nnfile_tnn_§nildnen contains 36
items and six subscales. The subscales are Scholastic Competence,
Social Acceptance, Athletic Competence, Physical Appearance, Behavioral
Conduct, and Global Self North. For children from third through eighth
grades the internal consistencies of the subscales were Scholastic
Competence .80-.85, Social Acceptance .75-.80, Athletic Competence .80-
.86, Physical Appearance .76-.82, Behavioral Conduct .71-.77, and Global
Self North .78-.84. Factor analysis revealed that each of the five
Specific subscales (Global Self North excluded) defined their own

80

factor. The range of average cross-loadings was .04-.08 with no cross-
loading greater than .18 (Harter, 1985). Correlations of the Scholastic
Competence Subscale with teacher ratings of scholastic competence ranged
from .28-.73 and with achievement test scores .27-.54. The lowest
correlations were in the third grade. The Social Acceptance Subscale
correlated .59 with sociometric peer ratings. The correlation between
Athletic Competence and gym teachers' ratings was .62 (Harter, I982b).

The 5eif_Eeneentinn_£netiie_ten_neeie§eent§ contains 45 items and
nine subscales (1986b, 1988). This is the most recent Of Harter's Self-
Perception Profiles. The subscales are Scholastic Competence, Social
Acceptance, Athletic Competence, Physical Appearance, Job Competence,
Romantic Appeal, Behavioral Conduct, Close Friendship, and Global
Self-North. The internal consistency of the subscales for four samples
of seventh through twelfth graders was .77-.91 for Scholastic
Competence, .77-.90 for Social Acceptance, .86-.92 for Athletic
Competence, .84-.89 for Physical Appearance, .55-.93 for Job Competence,
.75-.85 for Romantic Appeal, .79-.85 for Close Friendship, .58-.78 for
Behavioral Conduct, and .80-.89 for Global Self North.

Factor analysis revealed that each of the eight specific subscales
define their own factors. The range of average cross factor loadings
was .08-.12 with no cross loadings greater than .30. Intercorrelations
among domain specific subscales demonstrated several patterns.
Scholastic Competence was moderately related to Behavioral Conduct (.41-
.45). Social Acceptance, Close Friendship, Romantic Appeal, and
Physical Appearance appeared to form a moderately related cluster (.34-
.58). Across all samples Physical Appearance was consistently and

highly related to Self North (.66-.73). Scholastic Competence, Romantic

81
Appeal, and Behavioral Conduct were moderately related to Self North
(.39-.59).

The Adult Self Pereentien Enefjle contains 50 items and 12
subscales (Harter, 1986a). The subscales are Sociability, Job
Competence, Nurturance, Athletic Abilities, Physical Appearance,
Adequate Provider, Morality, Household Management, Intimate
Relationships, Intelligence, Sense of Humor, and Global Self-North. The
internal consistency of the subscales was .87-.92 for Global Self North,
.65-.75 for Job Competence, .75-.90 for Intelligence, .84—.91 for
Athletic Abilities, .81-.87 for Physical Appearance, .63-.86 for Sense
Of Humor, .74-.82 for Sociability, .72—.88 for Intimate Relationships,
.63-.88 for Morality, .67-.87 for Nurturance, .82-.90 for Household
Management, and .83-.90 for Adequate Provider. Factor analysis of the
eleven specific subscales (General Self-North excluded) revealed a clear
ten factor solution. The only subscale not to define its own factor was
Job Competence which had weak cross-loadings on Nurturance. It was felt
that this may have been due to half of the sample being
mothers/homemakers whose primary job responsibility was childrearing.
The average loadings for the ten factors ranged from .65-.89. The
average cross-loadings ranged from .05-.09. The §e1t_£eneentinn
Enntilee (Harter 1985, 1986a, 1986b, 1988) were selected for this study
because of their sound psychometric properties and the logical upward
extension from school age to adulthood which allows administration of
comparable instruments to all family members.

The Mnitidimeneiena1_Leen§_ef_§entnnl_§ea1e developed by Levenson
(1981) was used with the parents. This scale contains 24 items with

three subscales: Internal, Powerful Others, and Chance. Internal

82
consistency with college student and adult samples was .51-.64 for the
Internal Subscale; .72-.77 for the Powerful Others Subscale; and .73-.78
for the Chance Subscale. Test—retest reliabilities for a one week
period were in the .60-.79 range and for a seven week period ranged from
.62 to .73. Factor analysis revealed that the first factor was composed
entirely Of Powerful Other Subscale items. The second factor was
composed entirely of Internal Subscale items. The third factor was
composed entirely of Chance Subscale items. Control by powerful others
correlated .54 with the Chance Subscale and both were negligibly
correlated (r-.O4 8 .03) with the Internal Subscale. Correlations with
Rotter's I-E Scale were .25 and .56 with the Powerful Others and Chance
Subscales respectively and -.41 with the Internal Subscale.
Correlations with social desirability were negligible. The original Six
point Likert scale used by Levenson was modified to a four point Likert
scale for purposes Of the current study to keep the across instrument
response formats as consistent as possible. This sCale was selected
primarily because the response format provides a continuum rather than
dichotomous response allowing greater flexibility in data analysis.

The Nowicki-Strickland Leene_ef;§nntnel_§ea1e (1973) was used with
children and adolescents. This Scale contains 40 items. The original
yes-no response format was modified to a 4 point Likert scale from very
untrue to very true to maintain response format consistency and
flexibility in data analysis. Estimates Of the internal consistency of
the unmodified scale using the split-half method corrected by the
spearman-Brown formula ranged from .63 to.81 in third through twelfth
grade students. Test-retest reliabilities six weeks apart were .63 for

third grade students, .66 for seventh grade, and .71 for tenth grade.

83
The locus Of control scores were not significantly correlated with
social desirability scores. Internal scores were positively related to
self esteem. External locus of control scores were negatively related
to achievement scores.l This relationship was stronger for males.
Scores on the Nowicki-Strickland scale were Significantly related to two
other measures Of children's locus of control the Intellectual
Achievement Responsibility scale and the Bialer-Cromwell score.

The respective locus of control scale, one developed for adults and
the other for children and adolescents, identifies the respondent's
perception Of internal and external control over individual and family
situations.

3W (FIRM) was designed by
McCubbin and Comeau (McCubbin 8 Thompson, 1987) to assess the family's
repertoire Of neeenneee. It contains 69 self—report items which ask the
respondents to rate how well the items describe their family on a 0-3
scale. The internal reliability was .89. There are four subscales:
Esteem and Communication, Mastery and Health, Extended Family Support,
and Financial Nell-Being. The internal consistency for the subscales
was .85 for Esteem and Communication, .85 for Mastery and Health, .62
for Extended Family Support, and .85 for Financial Nell-Being. FIRM was
moderately and Significantly related to all four subscales of the Family
Environment Scale (FES). Using the Conflict Scale from the FES tO
divide two samples (families Of Children with myelomeningocele and
families of children with cerebral palsy) in half, the high conflict
families had a Significantly lower level of resources using the scores
on the FIRM. This instrument was only administered to the parents as

much of the content was assessed to be age-inappropriate and/or probably

84
unknown to children and adolescents. Parents completed FIRM to assess
the repertoire of resources available to the family. Due to a
substantial number of significant subscale intercorrelations and low

factor loadings only the total scale was used in this study.

9.99109
Canine was assessed with the MW
Evaluation Sealee (F-COPES) (McCubbin 8 Thompson, 1987). F—COPES was

designed to identify problem-solving and behavioral strategies used by
families in difficult or problematic situations. It consists of 30
items which ask the respondent to rate on a five point scale from very
untrue to very true how well each statement describes their own family.
The internal consistency Of the scale was .86. Test-retest reliability
over a four week period was .81. Factor analyses revealed five factors:
acquiring social support, reframing the family problem, seeking
spiritual support, mobilizing the family to acquire and accept help, and
passive appraisal. The internal consistency for each of the factors was
.83, .82, .80, .71, and .63 respectively. For purposes of the current
study the wording was adapted for the children's form Of F-COPES.
Adolescents and parents responded to the original form. Thus F-COPES
was administered to all family members.

Fa F io

Eamflxflncmning was measured by the BMW
Wine (Bloom. 1985). The mm: was

developed from four well-known self report family measures: the Family
Environment Scale (Moos 8 Moos, 1981), the Family Concept Q Sort (van
der Veen, 1965), the Family Adaptability and Cohesion Scales (Olson,
Sprenkle, 8 Russell, 1979), and the Family Assessment Measure (Skinner,

85
Steinhauer, 8 Santa—Barbara, 1983). The Family Functioning
Questionnaire was developed to identify a limited set of reliable
concepts describing family functioning. The respondent is asked to rate
on a four point scale how true each statement is of his/her family. The
Questionnaire consists of 75 items and 15 dimensions of family
functioning. The dimensions and their respective internal consistencies
as measure by coefficient alpha were cohesion .78, expressiveness .77,
conflict .76, intellectual-cultural orientation .71, active-recreational
orientation .57, religious emphasis .88, organization .74, family
sociability .71, external locus of control .67, family idealization .85,
disengagement .66, democratic family style .65, laissez-faire family
style .71, authoritarian family style .40, and enmeshment .78. Scale
score intercorrelations ranged from .03 to .73 with a mean Of .28.
Factor analyses revealed 13 factors which accounted for 88.4% Of the
variance. Second order factor analysis of the 15 scale scores revealed
heavy loadings of Cohesion, Expressiveness, and Family Idealization in
one more general factor. For purposes of the current study the wording
for the children and adolescent forms was adapted to make the questions
more easily understood in these age groups. All family members
completed the questionnaire.
Data Analysis
After the testing was completed, total and subscale scores as
appropriate were calculated on each instrument for each subject. The
mean, variance, and distribution Of the scores for each measure were
examined. Histograms of the raw scores derived for the Life Events

Questionnaire and Hassles Scale revealed a positive skewness with

outliers. In order to retain all of the cases and avoid the outliers

86
carrying undue weight in the data analysis logarithmic transformations
were performed on these scores (Niner, 1971). NO excessive skewness was
found in the histograms of the other measures.

Internal consistency, using Cronbach's alpha, was calculated for
each of the total and subscale scores. The results were examined and
compared with the reported values. The Life Events Questionnaire,
Hassles and Uplifts Scales, F-COPES, and the Family Functioning
Questionnaire were administered to all family members. Internal
consistency for these measures was calculated using the scores of
children, adolescents, and adults together. This was done to determine
if it was appropriate to utilize these scores together in data analysis.
An alpha greater than .60 was selected a priori as the criterion to
determine if family member scores (child, adolescent, adult) would be
used together in analyses where the family was the subject/unit of
study. A lower alpha was chosen due to the developmental differences in_
the respondents and the conceptual importance of using data from all
family members (Cronbach, Gleser, Nanda, 8 Rajaratnam, 1972). This
level Of internal consistency was reached on all relevant measures.

Based on the internal consistency analysis, two Of the subscales
from F-COPES and the majority of subscales from the Family Functioning
Questionnaire needed further examination. This was true when alpha was
computed with child, adolescent, and adult scores separately and
together. The two subscales from FCOPES that were evaluated further
were: Mobilization Of the Family to Acquire and Accept Help and the
Passive Appraisal subscales. Although the alpha for the Mobilization
subscale was .65, the subscale correlated highly with the Acquiring

Social Support subscale. Correlational and factor analysis Of the items

87
did not support two separate subscales. The Mobilization subscale was
combined with the Acquiring Social Support subscale. A

Cronbach's alpha for the Passive Appraisal subscale was .29. Three
Of the four items on this subscale had correlations below .30 with all
of the other items on the total instrument. The fourth item had one
correlations of .37 with an item on another subscale. This subscale was
dropped from further analysis. These revisions resulted in four scores
being used for coping in the data analysis: FCOPES total score,
Acquiring Social Support, Reframing, and Seeking Spiritual Support.

The internal consistency of the original subscales from the Family
Functioning Questionnaire are presented in Table 3. They ranged from
.24 to .77 with nine of the original fifteen subscales having alphas
below .60. Correlational and factor analyses were used to further
examine the items and subscales. These analyses resulted in nine
subscales. Three of the original subscales, Religious Emphasis, Family
Organization, and Family Idealization, were retained. The Cohesion,
Conflict, Sociability, and Disengagement subscales were revised based on
inter-item correlations, item—total correlations, and factor loadings.
Two new subscales were constructed: Open Communication and Chaotic
Family Style. The Open Communication subscale primarily contains items
from the original Expressiveness subscale and the Democratic Family
Style subscale with additional items that had high factor loading and
item-subscale correlations. The Chaotic Family Style subscale contains
items from the External Locus of Control Subscale, Laissez-Faire Family
Style subscale, and additional items identified from the correlational
and factor analyses. The internal consistencies Of the new subscales

are presented in Table 4.

88

 

 

 

Table 3
O in s i n ' -- c les
Subscale Cronbach's Alpha
Cohesion .71
Expressiveness .74
Intellectual-Cultural Orientation .54
Active-Recreational Orientation .49
Religious Emphasis .77
Organization .61
Family Sociability ' .57
External Locus of Control .57
Family Idealization .73
Disengagement .25
Democratic Family Style .49
Laissez-Faire Family Style .51
Authorization Family Style .24
Enmeshment .45
Table 4
n n -N
Subscale Cronbach's Alpha
Cohesion . .75
Open Communication .76
Conflict .70
Religious Emphasis ~ . .77
, Organization .61
Family Sociability .67
Family Idealization .73
Disengagement .64

Chaotic Family Style .62

 

89

Following the examination of the psychometric properties Of the
measures, all Of the scores were standardized. Standardization of
scores was performed to provide consistent units of measure across
instruments and across subject groups (child, adolescent, adult) in the
data analysis. Varying units Of measure across 36 variables and 160
subjects from three age groups could result in spurious findings.

rr l n 1

Correlations were calculated to examine the relationships among the
instruments measuring the model variables. Demanee included frequency
scores for positive, negative, and total life events, hassles, and
uplifts. £eneentien_et_eemanee included intensity scores for positive,
anegative, and total life events, hassles, and uplifts. Beennneee
included the MFIRM total score external locus Of control scores and the
scores from the six subscales of the Self Perception Profiles that are
consistent across age groups. These subscales are General Self North,
Scholastic Competence, Social Acceptance, Athletic Competence, Physical
Appearance, and Conduct/Morality. taming included the total score and
three subscale scores from F-COPES. Family funetinnjng was represented
by the nine subscale scores from the Family Functioning Questionnaire.
Correlations between scale and subscale scores within each of the model
constructs were examined to facilitate data reduction for analysis of
variance and multiple regression. Correlations between scale and
subscale scores across each of the model constructs were examined for
relationships between the model constructs. The Bonferroni procedure
was used to control the risk of findings spurious results due to the
multiple comparisons (Keppel, 1982). This resulted in a criterion of p
5 .001.

90
Analy§j§ nf yarjanee

Analysis of variance was performed to assess for Significant
between group differences. One group was composed Of the families with
Chronically ill children and the other group was composed of the
comparison families with healthy children. Differences were assessed on
each of the variables since the correlational analysis did not support
data reduction. Power for the analysis of variance with a medium effect
size (.30), 36 variables, and 160 subjects was .94 (Cohen, 1988). The
Tukey (HSD) procedure was used to maintain the family-wise Significance
rate at p g .05 (Niner, 1971).

Re i

Hierarchical multiple regression analyses were used to look at the
significance Of each of the model constructs and their relative position
in the model in order to evaluate the role Of each of the constructs for
future statistical tests of the model. These analyses were used to
examine the contribution of the model constructs in predicting
perception Of demands, coping, and family functioning respectively. The
first analysis examined the independent and interactive contributions of
demands and resources in predicting perceptions of demands. Then the
contributions of perception Of demands, demands, resources, and the
interaction of demands and resources in predicting family coping
(FCOPES) was examined. Lastly a series of multiple regression were run
to examine the contributions of demands, perception of demands,
resources, and coping to the variance in each Of the dimensions of
family functioning. The variables within each model construct were
entered as a set in the order predicted by the model. To control the

level Of‘significance individual variables were only examined if the

91

increment in R2 for the construct was significant (Cohen 8 Cohen, 1983).

Power with a medium effect size for the multiple regression analysis of

perception Of demands was .99, for FCOPES the power was .98, and for the

family functioning dimension .96 (Cohen, 1988).

HYPOTHESES
The following relationships among the variables in the family
adaptation model were hypothesized:

gnnnelatinnal Analyse;

A summary of the correlational hypotheses for each of the model

constructs is presented in Tables 5 through 9.

Analysje nf yarjanee
The following hypotheses will be used to compare the Chronic

illness and comparison families:'

1. The chronic illness families will have significantly higher scores
on life events and hassles (demands) than the comparison families.

2. The chronic illness families will score significantly higher on
family resources (FIRM) than the comparison families.

3. The chronic illness families will score significantly higher than
the comparison families on the total intensity Of negative life
events and total intenSity Of hassles.

4. The mean intensity of negative life events and hassles will be
significantly lower in the chronic illness families than in the

-comparison families.

5. The chronic illness families will score significantly higher on
coping (FCOPES) than the comparison families.

6. Consistent with the conceptual model and previous studies that

concluded the incidence of maladaptive individual and family

 

Resources

ELOC
PSC
PSA
PAC
PPA
PCM
GSN
FIRM

Perception
of Demands

NLEI
PLEI
TLEI
HI
U1

Coping

FCTOT
FCREF
FCSS

FCASS

Family
Functioning

FFCOH
FFOC
FFCON
FFSOC
FFID
FFREL
FFDIS
FFORG
FFCHA

z
lllllll+f"
I"!

+I+Ill+ll

'U
m

+ + + + + + + +-r-

'0
H1

n+|+++i++r

_'
IIIIIII+F
m

+l+lll+ll

I
IIIIIII+W1

u + + u + *1

+l+lll+ll

UF

+ + + + + + + +‘w1

U

'1'!

+ I + + I

+ + + + 11

n+i+++i++m

 

Table 6

r ion

93

 

Resources

Perception
of Demands

NLEI
PLEI
TLEI
H1
01

Coping

FCTOT
FCREF
FCSS

FCASS

Family
Functioning

FFCOH
FFOC

FFCON
FFSOC
FFID

FFREL
FFDIS
FFORG
FFCHA

Resources

ELOC PSC PSA PAC PPA PCM GSN FIRM

illilll+

+++++++
++++++
+++++
++++

++

+

ELOC PSC
+ -

PSA PAC PPA PCM GSH FIRM

I++i
+ll+

+Ii+i
+ll+l
+il+l
+ll+l
+ll+l
+i|+|

ELOC PSC PSA PAC PPA PCM GSN FIRM

llll
++++
++++
++++
++++
++++
++++
++++

ELOC PSC

n
v
>
v
3
D
S

i+l+++l++>
u+i+++u++v
i+n+++i++n
i+i+++|++m

m

H
i+u+++i++§

l+l+++l++

+J+iin+u

 

Table 7

94

Summary Of Correlational Hypotheseg Perception Of Demangg

 

 

Perception
of Demands
NLEI

Family
Functioning
FFCOH

FFOC

FFCON

NLEI

+

z
llllf—l++

l'fl

H

NLEI

+l+lll+l

Perception of Demands

PLEI

1
++++r+i++
H

PLEI

l+l+++l++

TLEI HI

—1
Illll_+++

m

D—I

I
title-01+

TLEI HI

+I+III+I
+l+lll+ll

UI

+ + + + ~a+

I+I+++l++H

 

Table 8

 

Samara! of CorrelaflmLflxmtheseLtemung

 

Coping
FCTOT

FCREF

FCSSS

FCASS
Family
Functioning
FFCOH

FFOC

FFCON

FCTOT

+ + + +

F TOT

C
+
+
+
+
+
+

Coping
FCREF

+
+
+

FCREF

+

l+l+++l+

FCSS FCASS

+ +

+

F

C
+
+
+
+
+
+

l + I + + + I + +

SS FCASS

 

95

 

<zumm

omega

4.
+ + +
I
+ + +
+ + +
c:
H
LI...
LL

+
+ i
I

2
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Ll.
LL

+ woke

+ zoom;
mmomu sumo; aged comma zoom; come zoom;

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geapaflce a.» _ a: c m
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96

functioning was not increased based solely on the presence of
chronic childhood illness, no differences have been hypothesized
between the chronic illness and comparison families in the present
study on perceived self competence, locus Of control, or family
functioning.
i l Re r ssion

The demands followed by resources and then the interaction Of
resources and demands will predict a significant amount of the
variance in perception Of demands.

Perception of demands followed by demands, resources, and then the
interaction Of resources and demands, will predict a Significant
amount of the variance in FCOPES.

FCOPES followed by perception of demands, demands, resources and
then the interaction of resources and demands will predict a
significant amount Of the variance on each Of the nine dimensions

of family functioning.

CHAPTER 3 RESULTS

The results are organized by the three major types of analyses.
The correlational analysis is presented first, followed by the analysis
of variance and the multiple regression analyses respectively. Nithin
each Of the major analysis sections the results are presented by model
construct beginning with the within construct results followed by the
between construct results.

Correlational Analysis

Correlational analysis was used to provide an initial examination
of the relationships among the variables. Because of the number of
comparisons the Bonferroni procedure was used resulting in a criterion
of p 5 .001 (Niner, 1971). In addition to examination of the
relationships among the variables, the within construct correlations
were examined to determine if data reduction was appropriate. Nith the
exception of subscale-total scale correlations, the correlations were
small to moderate. Thus all variables were retained for further
analysis.

Osmosis

The variables included in demands were the frequency of Negative
Life Events (NLE), Positive Life Events (PLE), Total Life Events (TLE),
Hassles (HF), and Uplifts (UF). Total Life Events is the sum of the
Negative and Positive Life Events used to represent the overall number
of major events experienced by the family. The correlation matrix for
the variables in demands is presented in Table 10.
MW

Negative life events, positive life events, total life events, and

hassles were positively interrelated. This supports the hypothesized

97

Table 10

 

LOWE;
Demands

Demands

NLE PLE TLE HF UF
NLE 1.00
PLE .37** 1.00
TLE .79** .74** 1.00
HF .39** .20 .30** 1.00
OF .07 .15 .14 .44** 1.00
Resources

NLE PLE TLE HF UF
ELOC .16 .02 .12 .16 .06
PSC -.06 -.01 -.08 - 12 .09
PSA -.07 .01 -.05 - 16 .12
PAC — 11 .04 -.04 - 10 .02
PPA — 18 -.02 - 15 - 33** .03
PCM -.21 -.05 - 16 - 16 .03
GSN - 24 -.03 - 18 - 32** .08
FIRM -.32 -.17 — 26 - 26 .21
Perception
of Demands

NLE PLE TLE HF UF
NLEI .99** .38** .80** .38** .11
PLEI .36** .99** .73** .21 .18
TLEI .81** .78 .94** .35** .17
H1 .43** .10 .27** .79** .20
01 .08 .16 .14 .24 .78**
Coping

NLE PLE TLE HF UF
FCTOT .00 -.08 -.11 .06 .25**
FCREF - 08 ~ -.16 -.21 -.07 .01
FCSS - 07 .05 -.04 .06 .19
FCASS .09 -.02 .01 .13 .31**
Family
Functioning

NLE PLE TLE HF UF
FFCOH -.25** .00 -.16 -.09 .22
FFOC -.01 .00 -.08 .05 .29**
FFCON .29** .11 .28** .17 .20
FFSOC 13 -.09 .11 -.02 .23
FFID - 12 -.03 -.07 .00 .27**
FFREL .12 .03 .10 .02 .18
FFDIS .19 .06 .16 .12 .14
FFORG -.09 -.01 -.11 -.09 .09
FFCHA .11 .17 .22 .20 .21

 

** p g .001

99

relationships between negative life events, total life events, and
hassles. The relationship Of positive life events with these variables
was hypothesized to be negative. The results are in the Opposite
direction. The only significant relationship found for uplifts was with
hassles. This relationship was positive and in the Opposite direction
Of the hypothesis. Thus both variables that reflect positive
experiences related positively with the variables measuring negative
experiences.
Between gonstrgct

Resources were represented by family resources (FIRM), external
locus of control (ELOC), and Six dimensions of perceived self
competence: scholastic competence (PSC), social acceptability (PSA),
athletic competence (PAC), physical appearance (PPA), conduct-morality
(PCM), and global self worth (GSN). The relationships between demands
and the variables measuring resources were scattered and did not support
the hypotheses. There were only two Significant relationships and those'
involved Hassles. Hassles were negatively related to global self worth
as well as to perceived physical appearance. Negative life events,
positive life events, total life events, and uplifts were not
significantly related to any of the resource variables.

The variables in perception Of demands reflected the total
intensity Of negative life events(NLEI), positive life events (PLEI),
total life events (TLEI), hassles (HI), and uplifts (U1). The
hypotheses for negative life events, total life events, and hassles were
supported, while the hypotheses for positive life events and uplifts
received limited support. Each Of the demands variables showed a high

correlation with its respective variable in perception Of demands. All

100

three life event measures significantly related to the positive and
negative life event intensity variables. Only negative life events,
total life events, and hassles were related to total life event and
hassles intensity. Positive life events were not significantly related
to the intensity of hassles or uplifts. Again the relationships of the
positive experience variables were in the Opposite direction Of the
hypotheses and uplifts was not significantly related to any Of the life
event intensity variables.

Coping was measured by a total score (FCTOT) and three specific
types Of coping responses, reframing (FCREF), seeking spiritual support
(FCSS), and acquiring social support (FCASS). The relationship between
demands and coping were limited in number and did not support the
hypotheses. There were three significant relationships and those
involved Uplifts. Uplifts was positively related to the total coping
score and acquiring social support. None of the other demand variables
were significantly related tO coping.

Nine dimensions of family functioning were examined: cohesion
(FFCOH), Open communication (FFOC), conflict (FFCON), sociability
(FFSOC), idealization (FFID), religious emphasis (FFREL), disengagement
(FFDIS), organization (FFORG), and chaotic style (FFCHA). The
hypotheses received limited support with four significant relationships.
Negative life events were positively related to family conflict and
negatively related to family cohesion. Total life events were also
positively related to family conflict. Uplifts was positively related
to Open communication and idealization. Positive life events and

hassles were not significantly related to the characteristics of family

101
functioning. Of the demands variables, uplifts Showed the highest
overall correlations with family functioning.
Mace;

Resources included external locus of control (ELOC), family
resources (FIRM), and six dimensions Of perceived self competence. The
dimensions Of perceived self competence were scholastic competence
(PSC), social acceptability (PSA), athletic competence (PAC), physical
appearance (PPA), conduct-morality (PCM), and global self worth (GSN).
The correlation matrix for resources is presented in Table 11.

° h tr

The six dimensions Of perceived self competence were all positively
related as hypothesized. Only the relationships between athletic
competence and.conduct-morality and social acceptability respectively
failed to reach Significance. External locus Of control was negatively
related to all six dimensions Of perceived self competence and to family
resources as hypothesized however the relationships with social
acceptability and physical appearance did not reach significance.

Family resources were positively related to perceived self competence as
hypothesized but only the relationships to physical appearance and
global self worth reached significance. External locus of control was
negatively related to family resources, perceived scholastic competence,
athletic competence, conduct-morality, and global self worth as
hypothesized. The relationships Of external locus of control with
perceived social acceptability and perceived physical appearance were

negative but not significant.

102

 

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103
W

The variables within resources showed a number of significant
relationships with perception Of demands, coping, and family
functioning. The hypothesized relationships between resources and
perception of demands were not supported. There were three Significant
relationships. Family resources, global self worth, and perceived
physical appearance were negatively related to hassles intensity.

The hypothesized relationships between resources and coping were
partially supported. Family resources were positively related to the
total coping responses. Family resources and two dimensions of
perceived self competence, conduct-morality and global self worth, were
significantly related to the use of reframing as a coping response.
External locus of control, perceived scholastic competence, social
acceptability, athletic competence and physical appearance were not
significantly related to any Of the measure of coping.

The hypothesized relationships between resources and family
functioning were supported on the whole for global self worth and family
resources but received limited support for external locus of control and
the other five dimensions of perceived self competence. Three of the
family functioning characteristics: conflict, disengagement and chaotic
style, represent maladaptive patterns Of functioning. Family resources
and global self worth were negatively related tO all three of these
dimensions. There were scattered relationships between other resource
variable and maladaptive family functioning. External locus of control
was positively related and perceived conduct-morality negatively related
to chaotic family style. Perceived physical appearance, conduct-

morality, and scholastic competence were all negatively related to

104
family disengagement. Perceived scholastic competence and social
acceptability were negatively related to family conflict.

The other six dimensions Of family functioning represent adaptive
family functioning. Of the dimensions of perceived self competence,
global self worth Showed the largest number of relationships with
positive characteristics Of family functioning. Global self worth was
positively related to family sociability, cohesion, Open communication,
and idealization. Perceived physical appearance was positively related
to family cohesion. Perceived scholastic competence was related to
family organization. Family resources were positively related to family
organization, sociability, cohesion, open communication, and
idealization. External locus of control, perceived social
acceptability, athletic competence, and conduct-morality Showed no
significant relationships with the adaptive dimensions Of family
functioning.

Lament—WW

Perception Of demands included the intensity Of negative life
events (NLEI), positive life events (PLEI), total life events (TLEI),
hassles (HI), and uplifts (U1). The correlation matrix for perception
of demands is presented in Table 12.

W

The intensity Of the three types of life events and hassles were-
positively interrelated as hypothesized. The intensity Of uplifts was
related positively to the other intensity variables but none of these
relationships was Significant. The intensity of negative life events
and total life events showed the strongest relationships with all Of the

intensity variables. The intensity Of positive life events was

105
Table 12

WW

 

Perception Perception Of Demands
Of Demands

NLEI PLEI TLEI HI UI
NLEI 1.00
PLEI .37** 1.00
TLEI .83** .78** 1.00
HI ' .44** .10 .32** .00
UI .13 .18 .18 .16 .00
Coping

NLEI PLEI TLEI HI U1
FCTOT .00 -.08 —.04 -.01 .33**
FCREF -.10 -.17 -.14 .06 .12
FCSSS -.07 .05 -.01 .01 .25**
FCASS .11 -.02 .05 .03 .37**
Family
Functioning

NLEI PLEI TLEI HI UI
FFCOH -.19 .00 -.13 .16 .30**
FFOC .01 .01 .01 .07 34**
FFCON .28** .08 .23 .28** 15
FFSOC -.10 -.07 .13 .04 .29**
FFID -.08 -.02 -.08 .02 .31**
FFREL -.10 .03 -.05 -.01 .18
FFDIS .18 .06 .13 .18 .22
FFORG -.10 -.02 -.06 .15 .25**
FFCHA .17 .17 .20 .20 .18

 

**p 5 .001

106
Significantly related tO only the intensities Of negative and total life
events.
w e on r t

The relationships of perception of demands with coping and family
functioning are generally consistent with the relationships found with
their respective demands variables. In contrast to what the model would
predict, the intensities of major life events and hassles were not
significantly related to the coping measures. Thus the majority of
hypothesized relationships were not supported. Uplifts intensity was
positively related to total coping and the specific coping responses Of
seeking spiritual support and acquiring social support as hypothesized..

Overall the hypotheses related to uplifts intensity and family
functioning were supported while the hypothesized relationships between
the other intensity variables and family functioning received scattered
support. Uplifts intensity also showed the largest number Of
Significant relationships with family functioning. It was positively
related to cohesion, Open communication, sociability, idealization, and
lorganization. The intensity Of major life events and hassles did show
one significant relationship with family functioning. The intensities
of negative life events and hassles were positively related to family
conflict.

£910.09

The variables included in coping were total coping responses
(FCTOT), and three specific types of coping responses reframing (FCREF),
seeking spiritual support (FCSS), and acquiring social support (FCASS).

The correlation matrix for coping is presented in Table 13.

Table 13

 

WW5:
Coping

Coping

FCTOT FCREF FCSS FCASS
FCTOT 1.00
FCREF .70** 1.00
FCSSS .51** .04 1.00
FCASS .88** .40** .40** 1.00
Family
Functioning

FCTOT FCREF FCSS FCASS
FFCOH .21 .13 .19 .17
FFOC .43** .36** .17 .40**
FFCON -.20 -.08 -.18 -.17
FFSOC .33** .24 .14 .30**
FFID .27** .20 .16 .25**
FFREL .35** .01 .74** .24**
FFDIS -.33** —.48** -.02 -.18
FFORG .26 .17 .22 .21
FFCHA -.12 -.30** .17 .02

 

** p 5 .001

108

n n r

The four variables in coping were all positively interrelated as
predicted but all of the relationships did not reach significance.
Total coping responses were significantly related to all three specific
types of coping responses. Acquiring social support and seeking
spiritual support were Significantly related and acquiring social
support was also significantly related to reframing. Reframing and
seeking spiritual support were not significantly related.

w n n u

The hypothesized relationships between coping and family
functioning were partially supported. The total coping responses were
positively related to four Of the six adaptive characteristics of family
functioning: open communication, sociability, idealization, and
religious emphasis. Total coping responses were negatively related to
disengagement but not significantly related to a chaotic family style or
family conflict. Reframing was positively related to open communication
and negatively related to disengagement and a chaotic family style.
Acquiring social support was positively related to Open communication,
sociability, idealization, and religious emphasis. There were no
significant relationships between acquiring'social support and family
TCOhesion, organization, conflict, disengagement, or a Chaotic family
style. Seeking spiritual support was significantly correlated with only
one Of the family functioning Characteristics, religious emphasis.

W

fljtnin anstnuet

Family functioning included nine characteristics of family

functioning: family cohesion (FFCOH), open communication (FFOC),

109
conflict (FFCON), sociability (FFSOC), idealization (FFID), religious
emphasis (FFREL), disengagement (FFDIS), organization (FFORG), and a
chaotic style (FFCHA). The within construct correlations are presented
in Table 14. The between construct correlations have been presented in
earlier tables. The relationships among the nine family functioning
characteristics were in the predicted direction but not all reached
significance. Family cohesion, Open Communication, sociability,
idealization, and organization were positively intercorrelated and
negatively related to family conflict and disengagement. There were no
Significant relationships between religious emphasis and any of the
other family functioning dimensions. Chaotic family style was
.positively related to family conflict and disengagement and negatively
related to organization. Overall family cohesion, open communication,‘
and conflict Showed the largest number Of significant relationships with
the other dimensions of family functioning. The relationships between
family functioning and the variables in the other model constructs have
been presented in previous sections.
Analysis of Variance
Analysis of variance was used to compare the families of
chronically ill children with families with healthy children on the
variables within each of the model constructs. For the family variables
analysis by group was performed first. Nhen there was a Significant
difference by group further analysis was done using the Tukey (hsd)
procedure to maintain the level of significance at p 5.05 (Niner, 1971)
for all pairwise comparisons. Further analysis was performed by age
group, sex, and family role. Age group was examined using adult

(parents), adolescents (all of whom were siblings), and children (target

110

 

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mcvcopuuc=0
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90.33433... 53:3 egg

00 mpnah

111
children and school age Siblings). Thus age group provided three
general subgroups. More Specific analysis was performed using family
role. In terms of family role parents had been analyzed by group and
sex with the adult age group. Offspring were examined by target
- children and siblings (both school age and adolescent) to determine if
it was age group or family role that resulted in differences. The
individual variables, the six dimensions of perceived self concept and
external locus Of control, in the resources construct were analyzed by
age group, sex, and family role again using the Tukey Test to control
the level of significance.
Dammit

The results Of the analyses of variance by group for negative life
events, positive life events, total life events, hassles frequency, and
uplifts frequency are presented in Table 15. Three of the five
variables in demands showed a main effect for group. The findings for
positive life events, total life events and uplifts support the
hypothesis related to greater demands in the chronic illness families.
The families with chronically ill children reported a significantly
greater number Of positive life events, total life events, and uplifts.
NO differences by group were hypothesized for uplifts. There were no
significant differences on negative life events or hassles although
negative life events approached significance. The lack of a significant
difference on negative life events fails to support the hypothesis.
'Thus the hypothesis related to demands was only partially supported.

‘Further analysis was performed to identify more specifically the
sources Of variance. The analysis of positive life events by age group,

asex, and family role is presented in Table 16. Children, both target

112

 

Table 15

MW

Source of Mean Degrees of

Variance Squares Freedom F 5
NLE

Group 3600480.]0 l 3.66 .06
Residual 983474.31 158

Total 999933.47 159

ELE

Group 8538070.62 1 8.97 .003*
Residual 952154.77 158

Total 999864.94 159

M

Group 3971434.84 I 4.05 .05*
Residual 981404.62 158

Total 1000209.84 159

HF.

Group 2461952.]6 1 2.49 .12
Residual 990758.29 158

Total 1000011.08 159

ILE

Group 6417927.15 1 6.69 .01*
Residual 959749.88 158

Total 994078.04 159

 

* p$.05

113

 

Table 16

v i v n -An 1 ar
Source of Mean Degrees of
Variance Squares Freedom F P 5
mm
Group 1123345.33 I 1.04 .31
Sex 1165924.36 1 1.08 .30
Group X Sex 247614.72 l .23 .63
Explained 837137.58 3 77 .51
Residual 1077578.54 71
Total 1067830.94 74
899.19.03.01;
Group 1003681.05 1 1.06 .32
Sex 909.07 1 .00 .98
Group X Sex 512435.97 1 .54 .47
Explained 505446.28 3 .54 67
Residual 943122.64 15
Total 870176.58 18
children
Group 68829525.77 1 8.63 .01*
Sex 43962.97 1 .05 .82
Group X Sex 403352.28 1 ' 51 .48
Explained 2485535.91 3 3 12 .03
Residual 797464.40 62
Total 875375.40 65
13.991.901.100
Group 4061436.73 l 5.94 .02*
Sex 1105014.95 1 1.62 .21
Group X Sex 342637.39 1 .50 .48
Explained I827776.93 3 2.67 .06
Residual 683671.64 41
Total 761678.82 44
Group 4363327.22 1 4.61 04*
Sex 1336749.28 1 1.41 24
Group X Sex 541721.03 I .57 45
Explained 2316498.22 3 2 45 08
Residual 946390.64 36
Total 1051783.53 39

 

* Significant using the Tukey Procedure

114

children and their siblings, in the Chronic illness families reported
significantly more positive life events than children in the comparison
families. There were no significant differences for parents (adults) or
adolescents. The analysis for total life events by age group, sex, and
family role is presented in Table 17. Again the Children in the chronic
illness families reported more total life events. There was a
significant group by sex interaction for chronically ill children with
chronically ill girls reporting significantly more total life events
than healthy target girls. There were no Significant differences for
parents, adolescents, or siblings. The results of the analysis Of
uplifts by age group, sex, and family role are presented in Table 18.
For parents there was a main effect for sex with mothers in both groups
reporting significantly more uplifts than fathers. The children in the
chronic illness families reported significantly more uplifts than
children in the comparison families, this difference was particularly
true for target children. There were no significant differences for
Siblings or adolescents.

Resogree;

Resources included one family variable, family resources (FIRM),
and seven individual resources, external locus Of control and six
dimensions of perceived self competence. The results for the analysis
Of variance on each Of the eight variables are presented in Tables 19
through 26. The hypothesis that the chronic illness families would have
a higher level Of family resources was not supported. There was no
significant difference between family resources in the chronic illness
versus the comparison families (Table 19). On the seven individual

resource variables no differences by group had been hypothesized. The

115
Table 17

WW

 

Source of Mean Degrees of

Variance Squares Freedom F P 5
802035281an

Group 592726.00 1 .51 .48
Sex 3969271.17 1 3.39 .07
Group X Sex 565830.95 1 .48 49
Explained 1697959.52 3 1.45 24
Residual ' 1172499.39 71

Total 1193801.83 74

mm

Group 18619.64 1 .01 .91
Sex 166583.67 1 12 .73
Group X Sex 924844.90 1 67 .43
Explained 368468.85 3 27 .85
Residual , 1386164.39 15

Total 1216548.47 18

Miner:

Group 3834035.22 1 7.34 .01*
Sex 578227.53 1 1.11 .30
Group X Sex 1780967.24 1 3.41 .07
Explained 2149976.59 3 4.12 .01
Residual 522332.59 62

Total - 597454.62 65

W

Group 2101351.08 1 3.45 .07
Sex 61440.26 1 .10 .75
Group X Sex 2910334.46 1 4.78 .04*
Explained 1692536.23 3 2.77 05
Residual 608967.49 41

Total 682847.18 44

SJbJJngs

Group 1621209.01 1 1.80 .19
Sex 526860.60 l .59 .45
Group X Sex 350012.92 1 39 .54
Explained , 922790.07 3 1 02 39
Residual 901348.30 36

Total 902997.67 39

 

* Significant using the Tukey Procedure

Table 18

116

unliItS_Enennensx:Analxsis.n£_1an1ance_

 

Source of
Variance

Group

Sex

Group X Sex
Explained
Residual
Total

Adolescents

Group

Sex

Group X Sex
Explained
Residual
Total

Children

Group

Sex

Group X Sex
Explained
Residual
Total

Iarget children

Group

Sex

Group X Sex
Explained
Residual
Total

Group

Sex

Group X Sex
Explained
Residual
Total

Mean
Squares

146489.
3780840.
1488283.
1799785.

739468.

782454.

2180639.

297361.
2587449.
1714333.
1924266.
1889277.

4506703.
404017.
94690.
1608602.
462935.
515812.

5912693.

501360:

4396728.
1230945.
1557522.
2227223.
1362020.
1428574.

Degrees of

Freedom

NV
#HWD—Ia-Ia—a

0a...
mum—aw:-

00
U'Iva-u-eh-e

ht—IMHHH

0%

0C»
000i-u—u—n

NNU‘

15.

IA

.66
.03*

:07

 

* Significant using the Tukey Procedure

117

Table 19
family Reeourees—Analygis gf Variance

 

Source of‘ Mean Degrees of
Variance Squares Freedom
BanentsLAdnlis

Group ‘ 2135938.28 1

Sex 3743.07 1
Group X Sex 2142185.37 1
Explained 1426708.33 3
Residual 985108.24 71
Total 1003010.95 74

2.17
2:18
1.45

 

* Significant using the Tukey Procedure

118

analyses of variance revealed two main effects for group and seven group
by sex interactions. The group differences were on perceived conduct-
morality and perceived athletic competence in children. Thus with the
exception Of perceived conduct-morality and perceived athletic
competence, no Significant between group differences were found on
perceived self competence and external locus of control was supported.
Although a null hypothesis cannot be proved, the lack of Significant
differences is important to the conceptual basis of the present study.

Individual variables were analyzed by group, age group, sex, and
family role differences. There were no significant differences between
the groups on perceived scholastic competence (Table 20). There was a
significant group by sex interaction for parents on perceived social
acceptability (Table 21). Fathers and mothers from the chronic illness
families and mothers from the comparison families rated themselves
significantly higher than comparison fathers on perceived social
acceptability. There were no significant differences for children,
adolescents, target children, or siblings. For perceived athletic
competence there was a significant group by sex interaction for parents
(Table 22). Fathers in the chronic illness group rated themselves
higher than fathers in the comparison group while mothers in the
comparison group rated themselves higher on perceived athletic
competence than mothers in the chronic illness group. There was also a
main effect for group for children on perceived athletic competence with
Children in the comparison families rating themselves higher than
children in the chronic illness families. There were no Significant
differences for adolescents, target children, or siblings. There was a

significant group by sex interaction for parents on perceived physical

Table 20

119

Eerse1xed_SChdlaStiC_Cdnnetense:Analxsis.n£_lanianse_

 

Source of
Variance

Earsntslhdults

Group

Sex

Group X Sex
Explained
Residual
Total

Addlescents
Group

Sex

Group X Sex
Explained
Residual
Total

Children

Group

Sex

Group X Sex
Explained
.Residual
Total

Ia:9:t.Children

Group

Sex

Group X Sex
Explained
Residual
Total

Siblings

Group

Sex

Group X Sex
Explained
Residual
Total

Mean
Squares

1023271.
172909.
1039635.
742166.
1011168.
1000263.

705292.

1142794:
999796.

793950.

958070:

12273.
2306842.
2079287.
1465476.

950440.
985556.

2817334.
184476.
2973377.
1946436.
832474.
918163.

Degrees of
Freedom F P 5
1 1.01 .32
1 .17 .68
l 1.03 .31
3 .73 54
71
74
l 62 .44
1 15 .70
1 01 .94
3 25 .86
15
18
1 .82 37
1 1.49 23
1 .00 97
3 .72 55
62
65
1 .01 91
1 2.43 13
1 2.19 15
3 1.54 22
41
44
1 3.84 .07
1 .22 .64
1 3.57 .07
3 2.34 09
36
39

 

* Significant using the Tukey Procedure

120

 

Table 21

iv ' i - l ' n
Source of Mean Degrees of
Variance Squares Freedom F P 5

1

Group 557406.07 1 .64 .43
Sex 802647.95 1 .93 .34
Group X Sex 10092363.83 1 .65 .001*
Explained 3812511.]4 3 .40 .01
Residual 866013.59 71
Total 985466.19 74
Adnlsssenis
Group 856.64 I .00 .98
Sex 1085538.46 1 .96 .34
Group X Sex 628.21 1 .00 .98
Explained 363989.77 3 .32 .81
Residual 1127272.22 15
Total -1000058.48 18
Childmn
Group 2850808.23 1 .83 .10
Sex 178047.59 1 .18 .68
Group X Sex 289111.28 1 .29 .59
Explained 1075245.05 3 .07 .37
Residual 1007738.66 62
Total 1010854.34 65
Group 648459.68 1 .69 .41
Sex 6984.41 1 .01 .93
Group X Sex 580894.41 1 .62 .44
Explained 412395.84 3 .44 .73
Residual 933895.11 41
Total 898338.35 44
51.911an
Group 1597561.07 1 .41 .24
Sex 1603237.85 1 .42 .24
Group X Sex 58875.31 1 .05 .82
Explained 967512.39 '3 .85 .47
Residual 1132407.35 6
Total 1119723.12 9

 

* Significant using the Tukey Procedure

Table 22

WM

121

 

Source of
Variance

Group

Sex

Group X Sex
Explained
Residual
Total

Addiescenis
Group

Sex

Group X Sex
Explained
Residual
Total

Children
Group

Sex

Group X Sex
Explained
Residual
Total

landeLCthdLen

Group

Sex

Group X Sex
Explained
Residual
Total

Group

Sex -
Group X Sex
Explained
Residual
Total

Squares

335811.
14589080.
4121085.
6332681.
774468.
999801.

274389.
689516.
2235766.
1080267.
984292.
1000287.

4572844.
2754374.

44082.
2288553.
1026522.
1084770.

2402784.
2811280.

33654.
1738691.
1022316.
1071160.

354783.
669623.
1435843.
784092.
1084208.
1061122.

Degrees of

Freedom

NV
hHwa—Ii—It—I

mat Ho—I
hHwHHO—I MNwI—IHH mourn-nu...

click

00
000mb“...

HN

1A

.51
.00*
.02*
.OO

 

* Significant using the Tukey Procedure

122
appearance (Table 23). Fathers in the chronic illness group rated
themselves significantly higher than fathers in the comparison group and
mothers in the chronic illness group on perceived physical appearance.
There were no significant differences for children, adolescents, target
children, or siblings. On perceived conduct-morality (Table 24) for
children there was a main effect for group with the comparison group
perceiving their behavior to be more positive. For siblings there was a
group bysex interaction such that male siblings of chronically ill
Children rated themselves significantly lower on perceived conduct
morality than male Siblings in the comparison families. There were no
significant differences for parents, adolesCents, or target children.
There was also a significant group by sex interaction for siblings on
global self worth (Table 25). Female Siblings Of chronically ill
children rated themselves significantly higher on global self worth than
female siblings in the comparison families. Male siblings of
chronically ill children rated themselves significantly lower on global
self worth than male siblings in the comparison families. There were no
significant differences for parents, adolescents, children, or target
children. On external locus Of control there was a significant group by
sex interaction for adolescents (Table 26). Female adolescents in
chronic illness families were significantly less external than
adolescent females in the comparison families. Male adolescents in the
chronic illness families were significantly higher on externality than
male adolescents in the comparison families. Consistent with all Of the
adolescents being siblings, the group by Sex interaction for siblings
approached significance. Hale siblings Of chronically ill Children were

also significantly more external than male siblings in the comparison

123
Table 23

.Wmmwmm

 

Source of Mean Degrees of

Variance Squares Freedom F P 5
Willis

Group 39835.74 1 .04 .84
Sex 4178922.03 1 4.50 .04*
Group X Sex 3819352.91 1 4.11 .05*
Explained 2676486.88 3 2.88 .04
Residual 928921.10 71

Total 999768.36 74

Adolescents

Group 80186.64 1 .08 .79
Sex 1269593.82 1 1.22 .29
Group X Sex 12895.40 1 - .01 .91
Explained 464716.12 3 .45 .72
Residual 1043475.76 15

Total 947015.82 18

mm

Group 2177157.87 1 2.06 .16
Sex 1070752.06 1 1.02 .32
Group X Sex 290773.82 1 .28 .60
Explained 1107239.54 3 1.05 .38
Residual 1055249.51 62

Total 1057649.05 65

mum

Group 1292219.05 1 1.53 .22
Sex ‘ 1489851.84 1 1.76 .19
Group X Sex 1366692.45 1 1.61 .21
Explained 1377290.03 3 1.63 .20
Residual 845886.50 41

Total 882118.56 44

Siblings

Group 116987.43 1 .10 .76
Sex 438350.70 1 .37 .55
Group X Sex 2903155.03 1 2.44 .13
Explained 1136533.40 3 .95 .43
Residual 1192501.05 36

Total 1188195.85 39

 

* Significant using the Tukey Procedure

Table 24
v

Source of
Variance

A
Group
Sex
Group X Sex
Explained

Residual
Total

Adolescents

Group

Sex

Group X Sex
Explained
Residual
Total

Children

Group

Sex

Group X Sex
Explained
Residual
Total

Group

Sex

Group X Sex
Explained
Residual
Total

Siblings

Group

Sex

Group X Sex
Explained
Residual
Total

Mean
Squares

2234784.
2484366.
101719.
1624836.
973466.
999873.

1284454.
1368341.
2975732.
1838160.

832701.
1000277.

4723589.

1045390:

1736039.

393145:

193674.
237426.
4978836.
1823857.
1144081.
1196371.

124

Degrees of
Freedom

NN

a—IN

Nwt-IH

.68

.04*
.21

 

* Significant using the Tukey Procedure

125

 

Table 25

l N - l f nc
Source of Mean Degrees of
Variance Squares Freedom F P 5
EarchsZAshflis
Group 1386451.]1 1 .40 .24
Sex 628473.64 1 .64 .43
Group X Sex 1778616.47 1 .80 .18
Explained 1257594.65 3 .27 .29
Residual 989022.59 71
Total 999910.64 74
Adolescents
Group 310994.59 1 .30 .59
Sex 19060.84 1 .02 .89
Group X Sex 2245145.20 1 .18 .16
Explained 860934.62 3 .84 .49
Residual 1027936.21 15
Total 1000102.61 18
Children
Group 1190955.64 1 .10 .30
Sex 433503.40 1 .40 .53
Group X Sex 321047.68 1 .30 .59
Explained 614657.88 3 .57 .64
Residual 1084070.51 62
Total 1062405.31 65
Group 1330137.95 1 .45 .24
Sex 658754.57 1 .72 .40
Group X Sex 690436.47 1 .75 .39
Explained 889312.12 3 .97 .42
Residual 915234.78 41
Total 913467.33 44
Siblims .
Group 156136.99 1 .14 .71
Sex 11927.73 1 .01 .92
Group X Sex 5201099.33 1 .60 .04*
Explained 1786947.98 3 .58 .21
Residual 1130008.01 36
Total 1180541.86 39

 

* Significant using the Tukey Procedure

126

Table 26
ExtornalJocoLoLContLolinalxsiLoLlanoncc
Source of Mean Degrees of
Variance Squares Freedom F P 5
BarentsZAdolis
Group 2034232.13 1 1.94 17
Sex 4040.56 1 .004 95
Group X Sex 1302385.48 1 1.24 27
Explained 1112958.51 3 1 O6 37
Residual 1047082.43 71
Total 1049753.08 74
Adolescents
Group 135969.86 1 .29 .60
Sex 570554.92 1 1.20 .29
Group X Sex 4119473.37 1 8.67 .01*
Explained 1617505.64 3 3.40 .05
Residual 475197.03 15
Total 665581.80 18
Children
Group 27597.07 1 .02 .89
Sex 42025.46 1 .03 .86
Group X Sex 157165.49 I .12 .73
Explained 77491.02 3 06 .98 -
Residual 1330751.77 62
Total 1272908.97 65
largsLChlldren
Group 32112.58 1 .03 .87
Sex 146754.49 1 .12 .73
Group X Sex 9.74 I 00 .99
Explained 59347.52 3 05 .99
Residual 1225723.52 41
Total 1146197.88 44
Siblings
Group 184627.81 1 .18 .68
Sex 944028.68 1 .91 .35
Group X Sex 4061675.72 1 3.91 .06
Explained 1771655.01 3 1.71 .18
Residual 1038116.41 36

39

Total 1094542.46

 

* Significant using the Tukey Procedure

127
families. The differences for female siblings were not significant.
There were no significant differences for parents, children, or target
children.
Perception of Qemandg

The variables included in perception of demands included the total
and mean intensity Of negative life events (NLEI, MNLEI), positive life
events (PLEI, MPLEI), total life events (TLEI, MTLEI), hassles (HI,
MHI), and uplifts (U1, HUI). The total scores prOvide a measure of the
subject's perception Of the total intensity Of demands being experienced
by the family. The mean score provides a measure Of the subjects
perception of the intensity Of a particular type of demands. The
analysis Of variance by group for these variables is presented in Table
27. The hypotheses of higher total intensity Of hassles, and lower mean
intensity on negative life events and hassles for the chronic illness
group were not supported. On all of the variables except hassles there
were significant main effects for group with the chronic illness
families rating both the total and mean intensity Of demands
significantly higher than the comparison families. The chronic illness
families scored significantly higher on total and mean uplifts intensity
which had not been hypothesized.

Further analysis was performed for the intensity scores on negative“
life events, positive life events, total life events, and uplifts. On
negative life events (Table 28) for parents there was a Significant main
effect for sex on total intensity with mothers in both groups rating the
intensity higher. There was no significant difference for mean
intensity Of negative life events for parents. Children in the chronic

illness group rated the total intensity Of negative life events as

128

 

Table 27
- l G
Source of Mean Degrees of
Variance Squares Freedom F P 5
NLEI
Group 4805721.87 1 .92 .03*
Residual 975926.59 158
Total ‘ 1000013.36 159
HALEI
Group 20363127.91 1 .87 .03*
Residual 4182589.24 157
Total 4284997.71 158
ELEI
Group 9188246.07 1 .69 .002*
Residual 947980.82 158
Total 999806.38 159
BELEI
Group 15360534.99 1 .84 .05*
Residual 3999423.90 157
Total 4071329.66 158
11.5].
Group 7279183.58 1 .58 .01*
Residual 960135.18 158
Total 999877.62 159
HILEI
Group 10365775.80 1 .82 .01*
Residual 1519992.]4 157
Total 1575978.11 158
111 .
Group 994274.61 1 .99 .32
Residual 999980.69 158
Total 999944.81 159
Bill
Group 182570.67 1 .18 .67
Residual 1010232.94 157
Total 1004994.57 158
Ill ' .
Group 8565061.99 1 .98 .003*
Residual 953986.46 158
Total 1001854.86 159
0111
Group 5337260.85 1 .51 .02*
Residual 968592.17
Total 996241.98

 

.05

me
'0
IA

129

 

Table 28

v ve t — i
Source of Mean Degrees of
Variance Squares Freedom F P 5
EorenisZAdulls
Total Intensity
Group 365050.67 1 .35 .56
Sex 5091286.39. 1 4.84 .03*
GrOup X Sex 1930429.44 1' 1.83 .18
Explained 2452256.46 3 2.33 .08
Residual 1052370.21 71
Total 1109122.36 74
Mean Intensity
Group 4150783.08 1 1.07 .31
Sex 10402105.38 1 2.68 .11
Group X Sex 2409929.3l 1 .62 .43
Explained 5513156.25 3 1 42 .25
Residual 3889224.30 71
Total 3955961.23 73
Adolcsconis
Total Intensity
Group 313143.48 1 23 .64
Sex 64428.02 1 05 .83
Group X Sex 63297.05 1 05 .83
Explained ° 151475.71 3 11 .95
Residual 1339583.79 15
Total 1141565.78 18
Mean Intensity
Group 8044495.73 1 1.20 .29
Sex 5491662.22 1 .82 .38
Group X Sex 2305472.87 1 .34 .57
Explained 5489242.93 3 .82 51
Residual 6722117.84 15
Total 6516638.69 18
Children
Total Intensity
Group 3955864.97 1 6.33 01*
Sex 167901.92 1 .27 61
Group X Sex 1258894.48 1 2.02 16
Explained 1844446.34 3 2.95 04
Residual 624832.03 62
Total 681121.92 65

130
Table 28 (cont'd)

Mean Degrees of
Squares Freedom
Children
Mean Intensity
Group 3635812.]1 1
Sex 1594114.]? 1
Group X Sex 12972571.85 1
Explained 6202073.53 3
Residual 2713893.38 62
Total 2874886.31 65
TomcLChlldren
Total Intensity
Group 2138545.97 1
Sex 310796.29 1
Group X Sex 575155.58 1
Explained 1011525.66 3
Residual 749220.71 41
Total 767105.13 44
Mean Intensity
Group 3617219.14 1
Sex 4190102.99 1
Group X Sex 11450191.12 1
Explained 6435166.16 3
Residual 3695322.93 41
Total 3882130.43 44
§iblings
Total Intensity
Group 4705332.75 1
Sex 155619.79 1
Group X Sex 17815.49 1
Explained 1579428.38 3
Residual 1053247.38 36
Total 1093722.84 39
Mean Intensity
Group 21518005.21 1
Sex 274478.95 1
Group X Sex 767285.73 1
Explained 7429596.37 3
Residual 4672963.93 36
Total 4885012.57 39

IA

N-F

Huh-i

 

* Significant using the Tukey Procedure

131

significantly higher than the children in the comparison group. For
mean intensity of negative life events there was no main effect but a
group by sex interaction with girls in the chronic illness families
perceiving negative life events in general as more being more intense
than girls in the comparison families. There was a main effect for
Siblings on both total and mean negative life events intensity with
Siblings in the chronic illness families scoring higher. There were no
significant differences for total or mean intensity of negative life
events for adolescents.

Further analysis Of the intensity Of positive life events (Table
29) revealed no significant differences for parents, adolescents, or
siblings on either mean or total scores. On total intensity but not
mean intensity of positive life events there was a Significant main
effect with children in the chronic illness group rating their total
positive life events intensity higher than children in the chronic
illness group. In contrast to negative life events, the group by sex
interaction for target children on positive life events Showed that
chronically ill boys rated the mean intensity Of positive life events
significantly higher than the target boys in the comparison families.
For positive life events this interaction was present for the target
children only, while for negative life events the group by sex
interaction was present for all children. There were no Significant
differences on total or mean intensity of positive life events for
parents, siblings, or adolescents.

The analysis of total life event intensity is presented in Table
30. On total life event intensity but not the mean intensity of total

life events there was a significant main effect for children with

132

 

Table 29

i v nt 1
Source of Mean Degrees of
Variance Squares Freedom F 5
BarentsLAdnlts
Total Intensity
Group 1768762.52 1 1.63 .21
Sex 1166889.27 1 1.07 .30
Group X Sex 243509.64 1 .22 .64
Explained 1049064.65 3 .96 .42
Residual 1088348.99 71
Total 1086756.38 74
Mean Intensity
Group 10657613.29 l 2.43 .12
Sex 2695882.57 1 .61 .44
Group X Sex 6978.38 1 .00 .97
Explained 4338928.55 3 .99 .40
Residual 4387321.92 .71
Total 4385333.]5 73
Adolescents
Total Intensity
Group 590923.47 1 .65 .43
Sex 9276.19 1 .01 .92
Group X Sex 800192.68 1 .88 .36
Explained 464979.46 3 .51 .68
Residual 906234.34 15
Total 832699.36 18
Mean Intensity ,
Group 1495687.50 1 .44 , .52
Sex 904922.34 1 .27 .61
Group X Sex 4969066.4O 1 1.46 .25
Explained 2493109.55 3 .73 .55
Residual 3405290.79 15
Total 3253260.59 18
Children
Total Intensity *
Group 6664653.]9 1 9.16 .004*
Sex 45427.54 1 .06 .80
Group X Sex 97527.43 1 .13 .72
Explained 2310902.49 3 3.18 .03
Residual 727171.94 62
Total ' 800267.20 65

133
Table 29 (cont'd)

Mean Degrees of
Squares Freedom
r
Mean Intensity
Group 7663702.80 1
Sex 61842.72 1
Group X Sex 9413220.87 1
Explained 5763766.32 3
Residual 2528672.98 62
Total 2677984.98 65
larchCthdren
Total Intensity
Group 4862309.29 1
Sex 834438.86 1
Group X Sex 75071.07 1
Explained 1915785.79 3
Residual 585984.27 41
Total 676652.56 44
Mean Intensity
Group 17100982.49 1
Sex 529158.28 1
Group X Sex 7387737.90 1
Explained 8327229.61 ' 3
Residual 1505490.35 41
Total 1970608.94 44
Siblings
Total Intensity
Group 3043442.85 1
Sex 911887.97 1
Group X Sex 659899.04 1
Explained 1701256.99 3
Residual 954564.75 36
Total 1012002.61 39
Mean Intensity
Group 996582.57 1
Sex 19654.49 1
Group X Sex 1037829.10 l
Explained 678211.59 3
Residual 3994368.94 36
Total 3739279.92 39

3.03

3.72
2.28

8.29

.249
.005
.260
.170

.002*

203*
.003

 

* Significant using the Tukey Procedure

134

 

Table 30
l ' v nt ' -A l i

Source of Mean Degrees of
Variance Squares Freedom F

r A
Total Intensity
Group 1004095.70 1 .84
Sex 5502810.18 1 4.61
Group X Sex 907254.03 1 .76
Explained 2454023.74 3 2.05
Residual 1194798.98 71
Total 1245848.63 74
Mean Intensity
Group ‘ 3050102.19 1 1.67
Sex 5967698.70 1 3.26
Group X Sex 1665236.79 1 .91
Explained 3469227.27 3 1.90
Residual 1829441.80 71
Total 1896830.24 73
Adolescents
Total Intensity
Group 242087.51 l .19
Sex 2995.41 1 .00
Group X Sex 242440.71 1 .19
Explained 161864.71 3 .12
Residual 1305239.49 15
Total 1114677.03 18
Mean Intensity
Group 1899752.20 1 .75
Sex 1037344.06 1 .41
Group X Sex 182881.02 1 .07
Explained 999824.59 3 .40
Residual 2534125.96 15
Total 2278409.06 18
children '
Total Intensity
Group 5923714.60 1 12.52
Sex 148561.45 1 .31
Group X Sex 951864.96 1 2.01
Explained 2401823.94 3 5.07
Residual 473324.37 62
Total 562332.04 65

Table 30 (cont'd)

r
Mean Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

langet Children
Total Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

Mean Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

siblings

Total Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

Mean Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

Mean
Squares

4882185.
1306602.
379313.
2071351.
872213.
927558.

3848443.
449.
509221.
1452922.
531992.
594783.

2982579.
321428.
5444824.
2912320.
837735.
979184.

3912720.
1918.
463772.
1487753.
943621.
985477.

7245096.
4183884.

914799.
3707282.
1508748.
1677866.

135

Degrees of

Freedom

0‘03
UINwi—Io—H—I

454.
mmeHH «h;- brawn-awh-
hHwi—u—u—a

004.0

00
0000-01—-

“0"

Nab

.23
.00
.96
.73

 

* Significant using the Tukey Procedure

136

children in the chronic illness group rating the total intensity of all
of their life events as higher. Although the mean intensity was not
higher for children as a group it was higher for Siblings with the
siblings Of chronically ill children perceiving the mean intensity Of
life events either positive or negative as more extreme than the
Siblings in the comparison group. Nhile chronically ill children viewed
the impact Of their total life events as more intense than the target
children in the comparison families, the mean intensity showed a group
by sex interaction with chronically ill boys perceiving any given life
event as more intense. There were no Significant differences on total
or mean intensity of total life events for parents or adolescents.

Further analysis of uplifts is presented in Table 31. For both
total and mean intensity Of uplifts there was a main effect for sex but
not group for parents. Mothers perceived their overall uplifts and
rated a given uplift higher than fathers. Both total and mean intensity
of uplifts were also rated higher by the chronically ill children than
the target children in the comparison families. There were no
significant differences for adolescents, children as a group, or
siblings.

CoLine

Coping included four variables, total coping (FCTOT), and three
specific types Of coping responses: seeking spiritual support (FCSS),
acquiring social support (FCASS), and reframing (FCREF). The analysis
of variance for these four variables by group is presented in Table 32.
The findings supported the hypothesis that the chronic illness families
would score higher on coping than the comparison families. There were

significant main effects for group on total coping, seeking spiritual

137

 

Table 31

n i c
Source of Mean Degrees of
Variance Squares Freedom P 5
rareMsZAdolts
Total Intensity
Group 823861.38 1 1.58 .21
Sex 6866521.01 1 13.16 .001*
Group X Sex 1044928.17 1 2.00 .16
Explained 2894248.28 3 5.55 .002
Residual 521751.58 71
Total 617933.88 74
Mean Intensity
Group 1698793.91 1 2.92 .09
Sex 6312784.49 1 10.85 .002*
Group X Sex 845858.79 1 1.45 .23
Explained 2882433.10 3 4.96 .004
Residual 581671.95 71
Total 676223.78 73
Adolescents
Total Intensity
Group 4421915.31 1 3.27 .09
Sex 15510.51 1 .01 .92
Group X Sex 1214586.69 l .90 .36
Explained 1879135.13 3 1.39 .29
Residual 1354426.25 15
Total 1441877.73 18
Mean Intensity
Group 3688853.54 1 2.76 .12
Sex 305818.80 1 .23 .64
Group X Sex 4459.26 1 .00 .96
Explained 1303848.77 3 .98 .43
Residual 1337639.09 15
Total 1332007.37 18
Children
Total Intensity
Group 3882091.85 1 3.58 .06
Sex 170940.64 1 .16 .69
Group X Sex 654568.62 1 .60 .44
Explained 1535217.54 3 1.42 .25
Residual 1084659.39 62
Total 1105454.38 65

Table 31 (cont'd)

Children
Mean Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

r ldr
Total Intensity
Group
Sex
Group X Sex
Explained
Residual
Total

Mean Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

Sitfllnos
Total Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

Mean Intensity
Group

Sex

Group X Sex
Explained
Residual

Total

Mean
Squares

1169352.
83739.
1780722.
997614.
1244916.
1233502.

9718901.
50377.
172823.
3317013.
' 1195993.
1340608.

6794632.
56225.
812797.
2552113.
1572906.
1639671.

2229623.
1607163.
310742.

1241972.
1201254.
1204386.

61017.
291441.
336250.
220108.
929369.
874811.

01

138

Degrees of

Freedom

00
MNWHa—u—a

#«h
«hHwo—H—oi—o

'hch
«hHwi—H—IH

00
0000b”-

00
Commune-eh-

Hy...

 

* Significant using the Tukey Procedure

Table 32

139

Coning;Analysis of Vanianee by Green

 

 

Source of

Variance

£9191

Group
Residual
Total

EA§§

Group
Residual
Total

3.5.5

Group
Residual
Total

EREE

Group
Residual
Total

Mean
Squares

4107791

8532497.
957292.
1004934.

22724945.
1014365.
1150910.

3226886.
1081430.

1094923

.69
1007757.
1027254.

31
38

31
97

64
12

10
31

.75

Degrees of

Freedom

158
159

158
159

158
159

158
159

4.08

8.91

22.40

2.98

.05*

.003*

.00*

.09

 

* p 5 .05

140
support, and acquiring social support with the chronic illness families
scoring higher on each of these measures. There was no Significant
difference on reframing.

Further analysis of total coping (Table 33) revealed no Significant
differences for subgroups. All subgroups for both age and family role
had a significant main effect for group on seeking spiritual support
(Table 34) with the members of the chronic illness families using this
coping response Significantly more than the members Of the comparison
families. Additional analysis Of acquiring social support (Table 35)
revealed a significant group by sex interaction with fathers in the
chronic illness group using this coping response Significantly more than
fathers in the comparison group.

Family functioning

Family functioning included nine dimenSions Of family functioning:
cohesion (FFCOH), open communication (FFOC), conflict (FFCON),
sociability (FFSOC), idealization (FFID), religious emphasis (FFREL),
disengagement (FFDIS), organization (FFORG), and chaotic style (FFCHA).
The analysis Of variance for the nine variables in family functioning is
presented in Table 36. No significant differences by group had been
hypothesized for family functioning. There were significant main
effects for two Of the dimensions. The chronic illness families scored
Significantly higher on cohesion and religious emphasis. These findings
on the whole support a lack of difference on family functioning based
solely on the presence Of a chronically ill child.

Further analysis of cohesion is presented in Table 37 and revealed
no Significant differences by subgroups. Further analysis Of religious

emphasis is presented in Table 38. There was a main effect for group

141

 

Table 33

-A
Source of Mean Degrees of
Variance Squares Freedom P 5
rareMsZAdolts
Group 1631068.99 1 2.53 .12
Sex 4201743.45 1 6.51 .01*
Group X Sex 1282891.85 1 1.99 .16
Explained 2352504.55 3 3.65 .02
Residual 645080.90 71
Total 714300.78 74
Adolescents
Group 716078.47 1 1.17 .30
Sex 1606505.41 l 2.61 .13
Group X Sex 12047.81 1 .02 .89
Explained .747574.06 3 1.22 .34
Residual 614499.79 15
Total 636678.83 18
Children
Group 1286767.11 1 1.01 .32
Sex 896101.55 1 .70 .41
Group X Sex 187280.01 1 .15 .70
Explained 849776.89 3 .66 .58
Residual 1279007.]0 62
Total 1259196.48 65
IaroeLChildren -
Group 2758716.59 1 2.31 .14
Sex 716074.73 1 .60 .44
Group X Sex 117251.17 1 .10 .76
Explained 1203130.27 3 1.01 .40
Residual 1196937.67 41
Total 1197359.89 44
51911an ‘
Group 981736.10 1 .90 .35
Sex 882145.89 1 .81 .37
Group X Sex 28007.45 1 .03 .87
Explained 561420.52 .3 .52 .67
Residual 1085928.50 36
Total 1045581.73 39

 

* Significant using the Tukey Procedure

142

 

Table 34
r -A

Source of Mean Degrees of
Variance Squares Freedom P 5
Panentszgults
Group 10110900.81 1 8.22 .01*
Sex 263705.29 1 .21 .65
Group X Sex 1215563.36 1 .98 .32
Explained 3851575.63 3 3.13 .03
Residual 1229909.80 71
Total 1336193.55 74
Adolescwts
Group 3063830.02 1 7.50 .02*
Sex 572868.28 1 1.40 .26
Group X Sex 53253.88 1 .13 .72
Explained 1192659.86 3 2.92 .07
Residual 408358.46 15
Total 539075.36 18
Children
Group 7277242.42 1 7.80 .01*
Sex 24703.71 1 .03 .87
Group X Sex 95621.77 1 .10 .75
Explained 2502217.80 3 2.68 .05
Residual 932663.16 62
Total 1005104.15 65

C
Group 9094394.87 1 9.73 .003*
Sex 1379787.64 1 1.48 .23
Group X Sex 208814.09 1 ' .22 .64
Explained 3575594.92 3 3.83 .02
Residual 934590.03 41
Total 1114658.55 44
Slhlinos
Group 5235252.55 1 7.28 .01*
Sex 3704054.38 1 5.15 .03*
Group X Sex 300990.85 1 .42 .52
Explained 2753242.98 3 3.83 .02
Residual 719452.61 36
Total 875898.02 39

 

* Significant using the Tukey Procedure

143

 

Table 35
- f ar n
Source of Mean Degrees of
Variance Squares Freedom F P 5
d
Group 2985154.79 1 4.57 .04*
Sex 4147920.82 1 6.35 .01*
Group X Sex 2513958.75 1 3.85 .05
Explained 3189575.95 3 4.88 .004
Residual 653345.73 71
Total 756165.88 74
Group 1975292.63 1 2.92 .11
Sex 1260943.62 1 1.87 .19
Group X Sex 12548.09 1 .02 .89
Explained 1037726.04 3 1.54 .25
Residual 676175.46 15
Total 736433.89 18
Group 2594638.06 1 2.13 .15
Sex 453628.17 1 .37 .54
Group X Sex 803942.52 1 .66 .42_
Explained 1346085.83 3 1.10 .36
Residual 1219748.60 62
Total 1225579.55 65
l
Group 4228682.77 l 3.24 .08
Sex 75872.42 1 .06 .81
Group X Sex 226358.98 1 .17 .68
Explained 1512671.54 3 1.16 .34
Residual 1304642.03 41
Total 1318825.86 44
iibllnos
Group 2965679.91 1 3.46 .07
Sex 575754.82 1 .67 .42
Group X Sex 51459.73 1 .06 .81
Explained 1105388.67 3 1.29 .29
Residual 857491.83 36
Total 876560.82 39

 

* Significant using the Tukey Procedure

144

 

Table 36
- 1
'Source of Mean Degrees of
Variance Squares Freedom F P 5
EECCH
Group 4742337.14 1 3.83 .05*
Residual 1238941.61 158
Total 1260975.55 159
EEOC
Group 1958335.71 1 1.65 .20
Residual 1189153.53 158
Total 1193991.15 159
EECCN
Group 11613.30 1 .01 .92
Residual 1158676.75 158
Total 1151462.52 159
EESCC
Group 349952.35 1 .31 .58
Residual 1145955.36 158
Total 1140949.05 159
EEID
Group 717267.21 1 .58 .45
Residual 1227674.06 158
Total 1224463.96 159
EEBEL
Group 11542905.46 1 10.62 .001*
Residual 1087230.41 158
Total 1152989.38 159
EEDJS
Group 695666.47 1 .61 .44
Residual 1138851.66 158
Total 1136064.33 159
EEQBC
Group 1273729.18 1 1.01 .32
Residual 1263691.88 158
Total 1263755.00 159
EECHA
Group 2351394.28 1 2.05 .15
Residual 1147059.25 158
Total 1154633.68 159

 

* p 5.05

145

 

Table 37

EaniluoheslonzAnersisilsrianco

Source of Mean Degrees of

Variance Squares Freedom F P 5

1

Group I825258.66 1 1.58 .21

Sex 328740.28 1 .29 .60

Group X Sex 264966.73 1 .23 .63

Explained 800600.53 3 .69 .56

Residual 1154770.43 71

Total 1140412.19 74

Group 499052.31 1 .38 .55
' Sex 1012606.41 1 .77 .39

Group X Sex 846551.43 1 .64 .44

Explained 765745.97 3 .58 .64

Residual 1315481.]4 15

Total 1223858.61 18

Children

Group 1394478.87 1 1.03 .31

Sex 43823.32 1 .03 .86

Group X Sex 1554188.03 1 1.15 .29

Explained 1013103.52 3 .75 .53

Residual 1353617.16 62

Total 1337901.14 65

IsrneLChlldren

Group 62401.10 1 .08 .78

Sex 451488.34 1 .56 .46

Group X Sex 64750.90 1 .09 .78

Explained 193571.94 3 .24 .87

Residual 813892.30 41'

Total 771597.73 44

5110.10:

Group 6802460.62 1 3.52 .07

Sex 3079945.86 1 1.60 .21

Group X Sex 84760.96 1 .04 .84

Explained 2985798.37 3 1.55 .22

Residual 1927464.14 36

Total 2008874.46 39

 

* Significant using the Tukey Procedure

146

 

Table 38

i O m ha - l i
Source of Mean Degrees of
Variance Squares Freedom
EsrenCsLAdans
Group 6665793.43 1
Sex 253221.19 1
Group X Sex 282192.48 1
Explained 2390946.03 3
Residual 994249.05 71
Total 1050871.90 74
Adolescents
Group 1793232.04 1
Sex 1437061.59 1
Group X Sex 334429.23 1
Explained 1142221.39 3
Residual 1437380.91 15
Total 1388187.66 18
Children
Group 2015736.11 1
Sex 198562.32 1
Group X Sex 2789095.77 1
Explained 1639554.25 3
Residual 1077166.06 62
Total 1103122.44 65
IaroeLChjldren
Group 1912923.21 1
Sex 437347.09 1
Group X Sex 47820.55 1
Explained 803128.00 3
Residual 936543.53 41
Total 927447.02 44
Slollms
Group 4646843.83 1
Sex 6588414.37 1
Group X Sex 4286800.85 1
Explained 4763341.43 3
Residual 1387366.29 36
Total 1647056.69 39

HR)

00.:-w

 

* Significant using the Tukey Procedure

147
with parents of chronically ill children scoring significantly higher on
this dimension than parents in the comparison families. For siblings
there was a significant main effect for sex but not group. Female
siblings viewed their families as having a greater religious emphasis
than male siblings did.
Summary

In summary the analysis of variance resulted in fourteen main
effects for group on thirty six variables. Families of chronically ill
children reported significantly more demands than the comparison
families. The chronic illness families reported more positive life
events, total life events, and uplifts. Negative life events approached
significance. There were no differences on hassles. The hypothesis of
a greater number of life events was supported. The hypothesis of
greater hassles was not supported, however the chronic illness families
did report a greater number of uplifts which had not been hypothesized.

0n resources there were two significant main effects for group out
of the nine variables. Children in the comparison group scored
significantly higher on perceived athletic competence and perceived
conduct morality. There were no significant main effects for the other
subgroups on the other four dimensions of perceived self competence or
external locus of control. No differences had been hypothesized between
the chronic illness and comparison families on perceived self competence
and external locus of control, and in general no differences were found.
There were no significant group differences on family resources. Thus
the hypothesis of higher resources in the chronic illness families was

not supported.

148

On perception of demands there were four main effects for group out
of five variables. The chronic illness families reported significantly
higher total and mean intensities on all demands except hassles. Thus
the hypotheses of higher total intensities and lower mean intensities
for negative life events and hassles in the chronic illness families
were not supported.

0n coping the analysis of variance resulted in three main effects
with the chronic illness families scoring significantly higher on total
coping responses and two of the three specific types of coping
responses. The chronic illness families scored higher on seeking
spiritual support and acquiring social support but not reframing. The
hypothesis of higher coping scores in the chronic illness group was for
the most part supported. .

Analysis of variance for family functioning resulted in two main
effects for group out of the nine dimensions of family functioning.
Families with chronically ill children scored significantly higher on
family cohesion and religious emphasis. 'Further analysis of cohesion by
subgroups revealed no additional significant differences. Further
analysis of religious emphasis resulted in a main effect for parents by
group with the parents in the chronic illness group scoring higher. For
siblings there was a main effect for sex with female siblings in both
groups scoring higher. No significant differences in family functioning
based solely on the presence of a chronically ill child had been
hypothesized and for the most part no differences were found.

Multiple Regression
Hierarchical multiple regression was used to provide an initial

statistical examination of the conceptual model. The amount of variance

149
accounted for by each of the model constructs was evaluated to determine
whether it should be retained and its position in the model for future
statistical tests of the model. The multiple regression analysis was
performed with perception of demands, coping, and each of the nine
dimensions of family functioning respectively as dependent variables.
For each equation a set of covariates including group (chronic illness
versus comparison), mother's work (MN), mother's education (ME), and
mother's occupation (M0) was entered first to control for the
significant differences found on these variables in earlier analyses.
The constructs were then entered in the order predicted by the model
with the interaction of demands and resources entered last. In the
analysis of family functioning and c0ping, perception of demands was
entered with the total intensity scores for the variables and then was
rerun with the mean intensity scores to determine which set was a better
predictor. For the family functioning dimensions the same procedure was
also carried out with coping, using the total coping score first and
then rerunning the analysis with the three subscale scores. A summary
of the multiple regression analyses is presented in Table 39.
er f m n

The findings support the hypothesis predicting a significant amount
of the variance in perception of demands. However, the model predicted
a main effect for resources, a prediction that was not supported. Nith
perception of demands as the dependent variable the model accounted for
79.1% of the variance. The covariates accounted for 9% of the variance
in perception of demands which was significant. Group was the only
variable in the set that contributed significantly. Demands accounted

for 68% of the variance. All of the variables within the set except

150

 

 

 

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155
total life events contributed significantly. Neither resources nor the
interaction of resources and demands Contributed significantly, however,
the interaction term did approach significance.
£221.09

In this analysis total coping was used as the dependent variable.
The role of perception of demands, resources, and the interaction term
in predicting coping is consistent with the model and the hypothesis.
The covariates and model constructs accounted for 37.3% of the variance
in coping. The covariates, perception of demands, resources, and the
interaction each contributed significantly to the prediction of coping.
The covariates accounted for 11% of the variance. Group was the only
significant variable in the covariate set. Perception of demands
accounted for 23% of the variance. Uplifts intensity was the only
significant variable in the perception of demands set. Nithin resources
which accounted for 8% of the variance, family resources and individual
perceived social acceptability were both significant. The interaction
demands and resources accounted for 3% of the variance. Although the
model predicted an effect size for demands that is more comparable with

that of resources, the findings do support the hypothesis.

EimflLflmsflmlns

cohesion
The findings related to cohesion support the hypothesis. The

covariates and each of the model constructs except the interaction term
contributed to the prediction of 38% of the variance in family cohesion.
The covariates accounted for 7% of the variance with group, mother's
education, and mother's occupation having significant effects. Group

and motheris education related negatively to family cohesion indicating

156

that being in the chronic illness group and lower maternal education
were associated with higher levels of family cohesion. Mother's
occupation related positively to cohesion. ~Total coping and perception
of demands accounted for 5% and 10% of the variance respectively with
uplifts intensity having a significant effect in the latter construct.
Demands accounted for 6% of the variance with negative life events
having a significant negative effect. Family resources and the global
self worth of family members made significant contributions to the 10%
of the variance accounted for by resources. Overall the findings are
consistent with the model content, although the model would predict that
coping would account for a greater amount of the variance than the
constructs that precede it.
mm

The findings are consistent with the model content and the relative
contribution of constructs. Constructs early in the model may not have
main effects if the constructs closer in proximity to the dependent
variable account for a large proportion of the variance. The model
accounted for 39.3% of the variance in open communication which supports
the hypothesis. The coping subscales accounted for 20% of the variance
with both reframing and acquiring social support making significant
contributions. Mean perception of demands was a better predictor of
open communication than the total intensity scores and accounted for 10%
of the variance. Mean hassles intensity had a significant negative
effect on open communication. The mean intensities of total life events
and uplifts made significant positive contributions. Covariates,
demands, resources, and the interaction term did not make significant

contributions to the prediction. Although the first three constructs in

157
the model did not make significant contributions individually, together
they accounted for 8.5% of the variance in open communication.
$2011.15!-

The model accounted for 36.2% of the variance in family conflict
which supports the hypothesis. Total coping, mean perception of
demands, and resources all contributed significantly. Coping had a
significant negative effect on family conflict and accounted for 4% of
the variance. As with open communication, mean perception of demands
was a better predictor of family conflict and accounted for 11% of the
variance. In contrast to the significant variables in open
communication, mean intensities of hassles and negative life events
showed significant positive effects on family conflict. Nithin demands
hassles had a significant positive effect and uplifts had a significant
negative effect. Demands accounted for 9% of the variance. Resources
accounted for 10% of the variance with only perceived scholastic
competence having a significant effect and it was negative. The
findings are consistent with the model content but the model would not
predict the earlier constructs (demands and resources) to have stronger
predictive value than the constructs closer in proximity to family
functioning. I
Sociability

The model accounted for 31% of the variance in family sociability.
Although this is lower than the previous family functioning dimensions
it was significant (p 5 .0004) and thus supports the hypothesis. Total
coping accounted for 14% of the variance and perception of demands 6% of
the variance. Hithin perception of demands uplifts intensity was the

only variable with a significant effect. Demands, resources, and the

158 .
interaction term did not make significant individual contributions but
together accounted for 10.2% of the variance. The findings are
consistent with the model in both content and relative contributions of
the constructs.

II 1' !'

Family idealization was the most poorly predicted of the family
functioning dimensions. The model accounted for 30% of the variance (p
5 .0009) which supports the hypothesis. Total coping and perception of
demands were both significant predictors accounting for 9% and 6% of the
variance respectively. Nithin perception of demands uplifts intensity
was the only significant variable. Although not significant
individually, demands, resources, and the interaction term together
accounted for 9.5% of the variance. The results support the model even
though the significant constructs do not account for a large percentage
of the variance in idealization.

Disengagement

Forty-four per cent of the variance in disengagement was accounted
for by the model. Thus the hypothesis was supported. The coping
subscales, mean perception of demands, and resources were significant
predictors of disengagement. The coping subscales accounted for 21% of
the variance and were better predictors than the total coping score with
reframing having a significant negative effect. Mean perception of
demands was also a better predictor than the total intensity scores
accounting for 7% of the variance. Mean hassles intensity made a
significant positive contribution while mean uplifts intensity made a
significant negative contribution. Resources accounted for 10% of the

variance. Nithin resources, global self worth was the only significant

159

variable and it was negatively related to disengagement. Demands and
the interaction term did not contribute significantly. The findings are
consistent with the model content and relative contribution of the
constructs although resources has a somewhat larger effect than would be
anticipated.
Wining;

Sixty percent of the variance in religious emphasis was accounted
for by the model which supports the hypothesis. The covariates made a
significant contribution with group being the only significant variable.
Although significant the covariates accounted for only 7% of the
variance while the coping subscales accounted for 48% of the variance.
This was clearly related to the large contribution of the subscale for
seeking spiritual support. These findings are consistent with the
analysis of variance finding that the chronic illness group uses the
coping strategy of seeking spiritual support significantly more than the
comparison group. None of the other constructs were significant. A
clear main effect for coping with lesser effects from the other
constructs is consistent with the model in content and relative
contribution of constructs.
91141112311211

The model accounted for 31.6% of the variance in family
organization which support the hypothesis. The coping subscales, mean
perception of demands, and resources were significant predictors. The
coping subscales accounted for 6% of the variance with seeking spiritual
support having a significant effect. Mean perception of demands
accounted for 14% of the variance. The mean intensity of total life

events and uplifts had significant positive effects. The mean intensity

160

of hassles had a significant negative effect. Resources accounted for
8% of the variance with perceived scholastic competence having a
significant positive effect and perceived athletic competence haying a
significant negative effect. The findings are consistent with the model
in content but the model would predict a greater contribution from
coping.
ghggtj; family Style

The model accounted for 51% of the variance in chaotic family style
which supports the hypothesis. The covariates, coping subscales,
perception of demands, and resources were significant predictors. The
covariates accounted for 11% of the variance with no single variable
being significant. The coping subscales accounted for 10% of the
varianCe with reframing making a significant negative contribution.
Perception of demands accounted for 8% of the variance. Hassles
intensity was the only significant variable. Resources accounted for
20% of the variance with external locus of control and perceived
athletic competence making significant positive contributions. The
findings are consistent with the model content and relative
contributions of coping and perception of demands however resources are
a stronger predictor than would be expected from the model.

gunman

It was hypothesized that the model constructs entered in the order
of the model would predict a significant amount of the variance in
perception of demands, coping, and each of the nine dimensions of family
functioning. The hypotheses were supported. The significance of the
constructs in predicting the dependent variables supports the content of

the model. The relative contribution of individual constructs in terms

161
of their position in the model was not consistently supported in the
prediction of each of the dependent variables. This may in part be due
to the significant correlations that were found between variables in
different constructs. Examination of the constructs across dependent
variables revealed that coping was significant in predicting all nine
dimensions of family functioning. Thus it was significant in all nine
of the equations into which it was entered. Perception of demands was a
significant predictor of coping and eight of the nine dimensions of
family functioning, making it significant in nine out of ten of the
equations into which it was entered. The findings for the variables
within perception of demands is also of importance. Life event
intensities were significant in only three of the ten equations while
hassles intensity was significant in five and uplifts intensity was
significant in seven. Demands were significant predictors of perception
of demands and two dimensions of family functioning. This is consistent
with the construct's early position in the model. Hith the exception of
the prediction of perception of demands where all of the demands
variables except total life events were significant, negative life
events, hassles, and uplifts were each significant in one but different
dimensions of family functioning. Resources were significant predictors
in six of the eleven equations into which they were entered including
coping and five dimensions of family functioning. This construct in
particular showed high correlations with family functioning which may
have resulted in its accounting for a larger proportion of the variance
in some of the dimensions of family functioning than would be predicted
by the model. 0f the variables within this construct perceived conduct-

morality and perceived physical appearance were the only two variables

162
that were not significant in any of the equations. The interaction of
demands and resources approached significance in the prediction of
perception of demands and was a significant predictor of coping.

Overall the model and its effectiveness in examining family
adaptation was supported. The findings support the retention of each of
the five model constructs for future research. However, the
significance of the interaction of demands and resources and the
position of resources in the model are weakly substantiated. The
interaction does not appear to play a crucial role in the predictions
and could be dropped from the equations with minimal effect. The
findings suggest that resources have a direct effect on coping and may
mediate the effect of perception of demands on coping. This would place

resources later in the model which is more consistent with the findings.

CHAPTER 4 DISCUSSION .

The discussion will be organized by the model constructs. Nithin
the constructs major findings from the three types of analysis will be
integrated and discussed as they relate to one another, other
constructs, previous research, and the implications for future research.
The discussion concludes with a summary.

09mm;

Much research has been done on the effect of major life events on
the psychological adjustment of adults. Research related to the impact
of life events on children has been sparse (Burt, Cohen, & Bjorck,
1988). The life events research in all age groups has focused almost
exclusively on the relationship between negative life events and
psychopathology with the inclusion of few positive events. Hhen a
sufficient number of positive events were included they were found to be
related to life satisfaction and unrelated to disorder (Zimmerman,
1983). The introduction of hassles and uplifts into the stress-coping
paradigm is more recent (Kanner et al., 1981). The pattern of research
with hassles and uplifts parallels that of the life events research.
Although there is less research on hassles and uplifts, what there is
focuses on adults and the relationship of hassles with negative
psychological outcomes. The inclusion of uplifts in the research is
rare (Kanner, Feldman, Heinberger, & Ford, 1987). In the current study
the three life event measures and haSsles were positively and
significantly related to one another. This is consistent with a unitary
construct of demands and the concept of 'pile up“ of demands (McCubbin
et al., 1983a). In addition they showed highly significant

relationships with the perception of demands variables and were the only

163

’ I64
significant predictors of overall perception of demands. Consistent
with previous research, negative life events and total life events were
significantly related to less adaptive characteristics of family
functioning, although these relationships were few. These variables had.
limited predictive value in relation to family functioning or coping.
In contrast to the interrelationships of the other four demands
variable, uplifts were significantly related only to hassles. Uplifts
were positively related to the life event measures but the relationships
were not significant. The possibly unique role of uplifts will be
discussed separately. Based on the previous research it had been
hypothesized in the current study that families with chronically ill
children would report significantly more life events and hassles. This
was partially supported. These families reported more positive life
events, uplifts, and total life events but not hassles. Negative life
events approached significance. Overall the chronic illness families
reported more positive than negative experiences. Although this
findings was not anticipated, it is consistent with the idea that
families redefine their total situation in a more positive manner over
time (Venters, 1981). If chronic illness families have developed
additional and more effective coping behaviors through their experiences
with the illness, they may not appraise some life events and hassles as
being a threat to their well being (Folkman, Lazarus, Gruen, &
DeLonogis, 1986). Specific events such as illness and hospitalization
might have a less negative effect on families who are knowledgeable
about the illness and hospitalization particularly if the chronically
ill child's condition improves considerably with hospitalization or if
the hospitalization is an expected and predictable part of the

165
management of the child's illness. This process of coping affecting
cognitive appraisal is supported by the negative relationship found
between total life events and coping.
The families with chronically ill children did experience significantly
more major life events than families with healthy children. Even though
the incidence of life events was higher there seems to be a relative
equilibrium between positive and negative life events with the
occurrence of positive events being somewhat more frequent. This
positively skewed balance may be a functibn of the adaptation process
that provides the family with the energy to go forward in spite of the
high level of demands.

Uplifts frequency showed a different pattern of relationships than
the other variables in demands. Uplifts were significantly related to
measures of coping and adaptive family functioning which suggests that
in comparison to life events and hassles, uplifts may have a unique role
in adaptation. In one of the few studies of uplifts in children, the
frequency of uplifts was found to have a significant relationship to
good adaptational outcome (Kanner et al., 1987). For the families in
the present study the frequency of uplifts was related to total coping
and acquiring social support as well as to the family functioning
dimensions of open communication and idealization. These relationships
suggest that positive experiences support positive family functioning.
This may occur through their relationships with coping responses as well
as adaptive family functioning leading to a higher frequency of uplifts.
The higher level of uplifts in the families with chronically ill
children could result from their more effective use of coping responses

such as enhancing their social support network which, in turn, would

0-

166
lead to enriched social interactions. Increased social interaction and
support could not only result in a direct increase in uplifts but may
also increase the family's awareness of the small positive things that
happen in their lives.

The higher level of family demands (primarily positive) reported by
children in the chronic illness families could result from the
interaction of family experience and developmental level. Children in
the chronic illness families reported more uplifts, positive life
events, and total life events. Chronic illness in the family may
increase the child's awareness of and experience with major life events
and smaller experiences that can be either hassles or uplifts and thus
affect their cognitive appraisal of these events relative to the
cognitive appraisal of children in families where no illness is present.
This awareness and experience could occur through direct communication
among family members, the family's philosophical style, and changes the
children experience in their lives such as when a sibling is
hospitalized. This interpretation is supported by earlier research
findings suggesting that families of chronically ill children in
addition to redefining their total situation also redefine their values
and goals developing a philosophy of life that places more emphasis on
human values such as love and sharing rather than future achievement
(Lavigne 8 Burns, 1981; Venters, 1981). Both the chronically ill
children and their school age siblings may define more events as
positive due to their experience with them, particularly if they have
experienced their family dealing effectively with major life events and
identifying smaller positive experiences. As the family redefines its

total situation and specific situations this redefinition may increase

167
the frequency of within family uplifts. Children in the chronic illness
families may have wider social contacts in terms of age groups,
professionals, and nonprofessionals as a result of both social support
and professional contacts related to the illness. These contacts may
increase uplifts for children in the chronic illness families compared
to children in families with healthy children.

The significant interaction between group and sex for target
children showing chronically ill girls reporting more total life events
than healthy target girls is more difficult to interpret. It may be a
result of their direct experience with life events related to their
illness as well as increased time with their parents due to treatments
and health care visits. A gender effect for frequency of life events
has not been reported in previous life events research with children
(Brown & Cowen, 1988). The gender effect could potentially result if
parents tended to overprotect and restrict chronically ill girls more
than chronically ill boys. This would be enhanced if the chronically
ill girls were more willing than the boys to comply with this role.
Developmentally the chronic illness itself as well as the future
implications of the chronic illness are abstract and often not well
understood by school age children due to their level of cognitive
functioning. This limited understanding would influence how children
view major life events related to the illness as well as other life
events with abstract components (Dunn, 1986). Thus when a chronically
'ill child becomes acutely ill, the ill child may view the positive one-
to-one attention from parents as positive. But the siblings may also
view increased time with parents while the ill child is sleeping or in

the hospital as positive. Thus cognitive functioning, family

168
experience, and the illness related social contacts may all influence a
child's awareness of demands and definition of them as positive or
negative.
W

Resources include both the family's resources and the resources of
individual members. Individual and family resources together were
significant predictors of both coping and adaptive family functioning.
Family resources include psychological, social, interpersonal, and
material resources. The positive relationship between family resources
and global self worth indicates that one's global self worth may
influence as well as be influenced by the family's resources. In
addition fewer family resources, particularly in combination with lower
global self worth, is associated with higher levels of externality of
control. This sense of lack of control in one's life could lead the
individual and family to use fewer coping responses and consequently not
develop an increased sense of competence or acquire increased family
resources (Folkman, 1984). Even though there were no significant
differences between families of chronically ill children and comparison
families on family resources, it is still important to note that despite
the high level of demands they did not have fewer resources than the
comparison families suggesting that the demands are not depleting the
resources of the chronic illness families. The negative relationship of
family resources with the intensity of hassles and the positive
relationship with coping and adaptive dimensions of family functioning
indicates that in the presence of greater family resources hassles are
viewed as less severe and coping strategies and adaptive family

functioning are increased. This relationship was further supported by

169
the significance of family resources and five of the individual
resources in predicting coping and adaptive family functioning which
supports the importance of resources in family adaptation.

Individual resources included perceived self competence and locus
of control. Higher levels of global self worth, perceived conduct-
morality, and perceived scholastic competence were associated with lower
levels of family conflict, disengagement, and chaotic family style.
These findings illustrate the importance of the relationship between
individual resources and family functioning for on-going family
adaptation. If an individual believes in his/her capability and the
family resources give the family a perception of competence, demands may
be defined more in terms of challenges that can be met rather than as
insurmountable obstacles. Family resources, individual resources, and
adaptive family functioning work reciprocally in promoting individual
development and facilitating family adaptation (McCubbin & Patterson,
1983b).

In the analyses of individual resources there were only two main
effects for group. On the whole these findings support a lack of
difference on perceived self competence and external locus of control
between the chronic illness and comparison groups and suggest that
chronic illness alone neither impairs nor facilitates perceived self
competence and external locus of control. This is consistent with
previous research on chronically ill children that found no differences
from healthy children when self report was used to examine self concept
and with sibling research that identified strengths in the siblings of
chronically ill children (Breslau, 1983; Gayton et al., 1977; Simmons et

al., 1987). The lack of research on nonpathological aspects of parents

170
does not allow for comparison of these findings, but in the present
study there were no significant differences in the individual resources
of parents based solely on the presence of a chronically ill child.

The findings do suggest that the presence of a chronically ill
child in a family does interact with the gender and developmental level
of members in effecting perceived self competence and locus of control.
This is evidenced by the seven group by sex interactions. Perceived
self competence accounted for the two main effects for group and five of
the group by sex interactions. External locus of control accounted for
the other two group by sex interactions.

Three of the interactions involved the parents. Fathers in the
comparison group rated themselves lower on perceived social
acceptability than both groups of mothers and the fathers from the
chronic illness group. The near equal means on this subscale for both
parents in the chronic illness family may reflect that when a chronic
illness is present both parents are involved more equally in individual
and family social interactions. This may be a result of the family
coping responses that involve social interaction and the extent of
social support outside of the family. This is consistent with the
importance of extra-familial sapport that has been described by a number

of authors (Frydman, 1981; Patterson a McCubbin, 1983a; Venters, 1981).
I In families with healthy children the mothers may play a larger role in
the family's social interactions.

0n perceived athletic competence there was a group by sex
interaction for parents. Fathers of chronically ill children rated
themselves higher on athletic competence than comparison fathers and

comparison mothers rated themselves higher than mothers of chronically

171

ill children. For fathers in the chronic illness group athletics may
serve as a means of coping through increasing interpersonal interaction
and self esteem. Physical activity may provide an outlet for the
frustration and stress of having a chronically ill child. The mothers
of chronically ill children may have moved more toward social
interaction and nurturing activities that can be incorporated with their
increased caregiving responsibilities. Participation in athletic
activities outside of the home could serve to detract from the time
available for caregiving for mothers of chronically ill children. In
addition mothers may find social activity to be a more effective means
of dealing with their frustration and stress than physical activity.

Perceived physical appearance resulted in the same findings for
fathers as athletic competence. Again the fathers of chronically ill
children rated themselves higher than fathers in comparison families and
mothers in the chronic illness families. Although depressive affect
might be used to explain the mother's lower scores that interpretation
would not be consistent with the lower scores of the comparison fathers.
Hhen paired with the athletic competence findings, it may be that
maintaining one's physical appearance and athletic skills or at least
perceiving them to be good supports the fathers identity which may be
negatively affected by having a chronically ill child. This explanation
would be consistent with Cummings (1976) findings related to negative
impact on fathers of having a chronically ill child.

For the school age children (both siblings and target children)
having a chronically ill child in the family did have significant
effects. On perceived athletic competence both target children and

siblings in the chronic illness group rated themselves lower than the

172
children in the comparison group. For children this may reflect lack of
experience due to limited time, finances, and parental support for
pursuing these activities (McCubbin et al., 1982a; Meyerowitz & Kaplan,
1967). It may be more difficult for the parents to find time to go out
and do sports with the children or to transport them to organized sports
activities. Both chronically ill children and their school age siblings
also reported lower perceived conduct-morality indicating they were less
satisfied with their behavior or viewed their behavior as less ‘good'
than children in the comparison families. The increased demands in
families with a chronically ill child may result in increased role and
behavioral expectations of the children. The parents may also not have
as much time for positive reinforcement and may be spending considerably
more time performing treatments and getting the child to health care
agencies. Increased role and behavioral expectations can lead to a
sense of mastery if the child's efforts are recognized. Conversely,
lack of parental feedback can diminish the child's sense of competence
(Harter, 1982a).

.In the present study no differences on perceived self competence
were found for the target children. A difference specific to the target
children, not including the siblings, might have been anticipated on
perceived physical appearance and athletic competence based on the
presence of illness but this does not appear to be the case. This could
indicate either a realistic appraisal of their physical appearance and
motor skills with acceptance of the differences or the use of denial.
The data from this study do not provide information to address this
issue. Specific domains of perceived self competence have not been

examined in previous research on chronically ill children but the

173
present findings are consistent with prior findings of no differences in
self concept between chronically ill and healthy children (Gayton et
al., 1977; Simmons et al., 1987).

Having a chronically ill child in the family does appear to
interact with the gender of siblings in relation to perceived self
competence. For both school age and adolescent siblings of chronically
ill children, the male siblings reported lower perceived conduct
morality than the male siblings in the comparison families. There was
also a significant group by sex interaction for siblings on global self
worth. Again the male siblings of chronically ill children scored
significantly lower than the males siblings of healthy children. In
contrast, the female siblings of chronically ill children scored
significantly higher on global self worth than the female siblings of
healthy target children. Global self worth would certainly be effected
by the siblings perception of their behavior. Female siblings may take
on more tasks at home and receive both more feedback and positive _
reinforcement than their male counterparts leading to a sense of mastery
(Harter, 1982a). Female siblings of chronically ill children may also
receive more positive reinforcement within the family for helping with
extra demands than female siblings in healthy families where there are
less demands. For the female siblings in the chronic illness group,
being more involved at home may increase their contact with their mother
in a positive way that is developmentally consistent. Male siblings may
be more interested in peer group and sports activities outside of the
family. There may be less support and guidance at home for the
developmental interests of the male siblings and decreased opportunities

for these siblings to be involved with peers in organized and informal

174
activities outside of the family. This could result in less positive
reinforcement and support for the male siblings leading to a diminished
perception of conduct-morality. Their fathers may have less time or be
less inclined to do something extra with them as found by Cummings
(1976). The development of sex role is a prominent process in the
school age years. In this age group the children tend to be traditional
and conservative in terms of sex role. They identify with and imitate
same sex models and the same sex parent. After starting school the
children also receive considerably more feedback from peers and adults
based on behavioral expectations for their sex (Bandura, Ross, & Ross,
1983; Maccoby & Jacklin, 1974). This aspect of development may be more
difficult for the male siblings of chronically ill children to
accomplish leading to a diminished sense of competence in terms of their
behavior as well as their global self worth.

Adolescent males and male siblings (including school age) in the
chronic illness families both showed greater externality in locus of
control than their counterparts in the comparison families. The lower
levels of global self worth and perceived conduct-morality may lessen
’the boys confidence in decision making and problem solving thus
diminishing the development of a sense of control. If developmentally
consistent activities have been blocked by family demands, decreased
parental time, and/or finances, this could increase the feelings of
external control. Adolescent females who were siblings of chronically '
ill children scored significantly lower on externality than adolescent
females in the comparison group. This relationship was not significant
for the chronic illness group when female siblings of all ages were

compared. If the older female siblings have indeed participated more in

175

family tasks related to the chronic illness over time, their
participation with the family in dealing with the increased demands may
increase their sense of internal control. The findings on individual
resources indicate that male siblings of chronically ill children may be
at increased risk for psychosocial difficulties while the female
siblings may benefit from the experience of having a chronically ill
sibling.

WW

Prior life events research and to a lesser extent the research
involving hassles and uplifts have focused on the relationship between
these experiences and pSychological dysfunction. The majority of the
researchers have concluded that standard or subjective weighing of these
events does not add to their predictive ability and in some cases
detracts from it (Zimmerman, 1983). Because of the focus on
psychological disorder and the lack of subjective weights there is
little research with which to compare perception of demands in the
current study. Although the number of negative life events, positive
life events, hassles, and uplifts significantly predicted the perception
of demands in the present study, the additional findings related to
perception of demands suggest that the inclusion of subjective weights
may be an important parameter in studying adaptation.

Negative life events, positive life events, hassles, and uplifts
predicted greater than two thirds of the variance in perception of
demands. This supports the concept of pile up of demands and a total
intensity of demands for families. The significant positive
intercorrelations of the intensity of life events and hassles further

support the unified construct of perception of demands in the model

176
reflecting the intensity of the overall situation. As was true in
demands, the intensity of uplifts showed a different pattern of
relationships than the other variables within perception of demands.

The inclusion of the intensity of uplifts is supported by its
theoretical relationships with hassles and life events. However, its
role in this construct seems to be more complex and obscure than the
other variables. The intensity of uplifts is the only variable in
perception of demands that has a significant relationship with coping.
Uplifts intensity is positively related to total coping, seeking
spiritual support, and acquiring social support. These findings suggest
that perceiving small events as opposed to major life events as being
very positive may facilitate the implementation of coping responses in
general and specific coping responses aimed at seeking spiritual support
and acquiring social support. High levels of uplifts intensity may be
associated with viewing the world external to the family as positive and
supportive. This would lead to a greater likelihood of seeking help
outside of the family when demands increase beyond the family's
capacity. This interpretation is supported by uplifts intensity being a
significant predictor of total coping. Uplifts intensity also shows
more relationships with family functioning than the other perception of
demands variables. Uplifts intensity contributed significantly to the
prediction of adaptive family function including positive contributions
to the prediction of cohesion, open communication, sociability, positive
attitudes about one's family, and organization and negative
contributions to the prediction of family conflict. The relationships
with family functioning may result through the relationship between

uplifts intensity and coping and/or a more direct relationship between

177
uplifts intensity and family functioning. These findings are consistent
with the findings of previous research on uplifts in children and
adolescents that_found uplifts to be associated with a number of
indicators of emotional well-being and social adjustment regardless of
gender (Kanner et al., 1987). The findings of research on the effect of
uplifts on adaptational outcomes in adults has been less clear. For men
uplifts have been unrelated to adaptational outcomes while for women
they have shown a positive relationship with negative outcomes (Kanner
et al., 1981). The findings in the present study are not consistent
with the previous findings with adults. Although psychological symptoms
were not measured there is no evidence of lower perceived self
competence in the mothers.

In contrast to uplifts intensity, high levels of intensity for
negative life events and hassles were associated with increased family
conflict. These findings are consistent with the uplifts findings of
the current study if they are interpreted to indicate that the intense
negative perception of life events and hassles is associated with
maladaptive, nonsupportive characteristics of family functioning. The
lack of significant relationships between intensity of life events,
hassles, and coping may reflect a static rather than a diminished level
of coping responses when faced with an increased number and intensity of
negative demands. Not increasing coping responses to deal with these
demands could then result in maladaptive family functioning
characteristics. For example, previous research with individuals has
found a positive relationship between negative demands and maladaptive

outcomes (Kanner et al., 1981; Kanner et al., 1983; Zimmerman, 1983).

178

Families with chronically ill children describe the total demands
they are experiencing as more intense as reflected in the total
intensity scores. The mean intensity scores indicate that these
families also perceive demands in general to be more intense. The
differences between the chronic illness families and the comparison
families rather than being tied to the intensity of negative experiences
as hypothesized involved all types of demands except hassles. Although
the intensity of both positive and negative life events was
significantly higher in the chronic illness families, the significance
of uplifts but not hassles suggests that positive experiences both major
and minor may have greater relevance to the chronic illness families'
perception of their total situation and their adaptation. This is an
area that has not been addressed in previous family or chronic illness
research but may relate to redefining their total situation in a more
positive manner and to changes in their cognitive appraisal through
experience (Venters, 1981; Folkman et al., 1986).

‘Examination of the analyses of each of the intensity variables
provides further insight into the effects of age, gender, and family
role on the perception of demands. Mothers in both groups perceived the
total intensity of negative life events as being more extreme than
fathers. This is consistent with previous life event research findings
that females view negative events as more upsetting than males (Kale &
Stenmark, 1983). Chronically ill children and their siblings rated the
total intensity of the negative life events they were experiencing as
significantly more intense than their counterparts in the comparison
group. The developmental level, particularly in relation to cognitive

functioning, of these children and siblings may limit their

179
understanding of major life events particularly as they relate to the
chronic illness (Dunn, 1986). Children also have more limited coping
responses related to their developmental level which may also make the
experience of negative life events more intense (Rose, 1984; Spirito et
al., 1988). The main effect for siblings on mean intensity of negative
life events indicates that all siblings (both school age and adolescent)
of chronically ill children perceive negative life events in general to
be significantly more severe. The group by sex interaction for children
indicates that this perception is particularly true for school age girls
whether siblings or chronically ill. This general perception of
negative life events as being extremely intense may reflect their
experience with these events in the past, their limited understanding of
them, and their coping abilities. The findings do raise the question of
whether the school age girls are at risk for a negative attribution
style and psychosocial problems (Kaslow, Rehm, & Siegel, 1984).

For positive life events, the higher total intensity for the
chronic illness families is related in part to the larger number of
positive life events reported by these families. However, the
significantly higher mean intensity of positive life events indicates
that the high total intensity is not solely a result of the number of
positive life events. The high mean intensity suggests that the
perceived intensity of positive events may provide equilibrium for the
family. Although it could be interpreted as overestimation by the
chronic illness families or use of denial by the comparison families the
most parsimonious and least pathological interpretation would be that
this intensity is a result of coping responses and maintaining

homeostasis. Chronically ill children and their school age but not

180
adolescent siblings in particular experience a high total intensity of
positive life events. As with the intensity of negative life events,
this may be related to developmental level and coping abilities.
Chronically ill boys in particular perceived positive life events in
general as more intense than their siblings or the children in the .
comparison families. Chronically ill children may have more experience
with a broader range of life events which may increase their awareness
of and responsiveness to these events. For the chronically ill boys in
particular, perceiving positive events as intensely positive may provide
an equilibrium in the valence of the demands that they experience. In
contrast, chronically ill girls and their school age female siblings
perceived negative life events as being significantly more intense than
the boys did. These gender differences could reflect the gender
differences that have been described in the attributional style of boys
and girls in general. This could place the girls at risk for
depression. The attributional style associated with depression includes
not only viewing events as negative but also a negative self concept but
there was no evidence of decreased self concept in the chronically ill
girls in this study or in their siblings (Dweck, Goetz, & Strauss, 1980;
Kaslow et al., 1984).

The findings for the total intensity of all life events are
consistent with summing the results for positive and negative life
events and indicate that the chronic illness families and their children
in particular are experiencing a high intensity of demands in their
families even though the positive and negative life events may be in
relative balance. Siblings in the chronic illness families perceived

life events in general as being more intense. This is consistent with

_ 181
the finding for siblings of higher intensity of negative life events and
_the trend for all children including siblings in the chronic illness
group to perceive higher mean intensity for positive life events. The
group by sex interaction with chronically ill boys rating total life
events significantly higher than target boys in the comparison families
suggests that the intensity with which chronically ill boys rated
positive events is greater than the intensity with which the girls rated
negative events resulting in the group by sex interaction for total life
events. If this is true then the girls may be at less risk than would
be predicted from examining the results of negative life event intensity
alone.

The significance of the intensity of uplifts but not hassles
suggests that for the chronic illness families the intensity of uplifts
may provide a positive skew to the balance between the intensity of
positive and negative experiences. In contrast to major life events,
for chronically ill children uplifts showed no group by sex interaction.
This suggests that the gender differences for major life events may
relate more to coping abilities and cognitive functioning than to a
generalized attribution style. Small positive events may not only be
more noticed but also more appreciated when families are dealing with a
large number of major life events that are experienced as being very
intense. Since the model of adaptation is continuous across time, the
prior use of all three types of coping responses could result in
increased uplifts and consequently an increase in the total intensity of
uplifts. 'Reframing of the total situation and major events over time
could lead to a cognitive set that includes more small positive

occurrences and defines more new occurrences as positive. Seeking

182
social and spiritual support could lead to positive personal and social
experiences that are experienced as particularly positive due to the
number of demands the family faces. The awareness of these small events
and the perception of them as intensely positive may be heightened as
the family goals are redefined in terms of humanitarian rather than
achievement oriented goals. The high level of total uplifts intensity
in the chronic illness families may lead over time to the general
tendency to rate uplifts as intensely positive as reflected in the
higher mean uplifts intensity in the chronic illness families. In
combination with the positive life event intensity findings, this is
suggestive of a positive attribution style which would be counter to the
many discussions of depression in families of chronically ill children.
1222103

In this study a significant amount of the variance in coping was
predicted by perception of demands, resources, and the interaction of
demands and resources but not demands themselves. This supports the
position of coping in the model as well as the use of the families'
subjective perception of the demands they are experiencing. Nithin the
construct of coping, the positive relationship between acquiring social
support and seeking spiritual support may be a result of both the social
interactional nature of these coping strategies as well as their
potential for assisting the family in reducing the demands and
tolerating the distress created by aspects of the illness that cannot be
controlled (Folkman, 1984). Acquiring social support clearly involves
interaction with other people. Hhile spiritual support typically
involves belief or faith in a higher being, it also involves interaction

with the clergy and one's religious institution. In contrast, reframing

183

was not related to the other two types of coping. This lack of
relationship may result from reframing being primarily related to
cognitive activity that does not necessarily involve social interaction.

Consistent with the model, total coping was poSitively related to
adaptive family functioning characteristics including open
communication, sociability, idealization, and religious emphasis, and
was negatively related to the maladaptive pattern of disengagement.
Chaotic family style showed the weakest relationships with total coping.
It may be the case that in chaotic families, unpredictability limits
family coping responses and demands are adapted to more in relation to
individual needs. Acquiring social support was positively related to
open communication, sociability, idealization, and religious emphasis.
Acquiring social support as a means of coping involves the use of both
communication and social skills and may indeed facilitate the family's
use of open communication and social interaction both within and outside
of the family. These findings also suggest that some of the family's
social support is sought within their religious framework. If the
acquisition of social support is a positive experience for the family,
family members may develop or increase their positive attitudes about
themselves as a unit. The strength of the relationship between coping
and family functioning is further supported by the finding that coping
was a significant predictor of all nine dimensions of family
functioning, a finding that once again illustrates that coping is
related to both adaptive and maladaptive dimensions of family
functioning. This supports the position of coping in the model relative

to family functioning.

184

Based on the above findings, the families with chronically ill
children would need to have significantly higher scores on coping to
deal with their perceived demands adaptively. The findings indicate
that this is true. The families with chronically ill children made use
of significantly more coping responses than the comparison families.
The significantly higher scores on total coping indicate both a greater
number and a broader range of coping responses. In view of the large
number of demands and the intensity of these demands, the greater number
and broader range of coping responses are important assets for effective
adaptation (Pearlin & Schooler, 1978). Reframing was the only specific
coping response that was not significantly higher in the chronic illness
families. Previous research has found that families with chronically
ill children usually redefine the illness and their total situatiOn
within the first year after the diagnosis. The diagnosis of the chronic
illness in all of the families that participated in the current study
had been made at least one year prior to the study. By definition
chronic illness is long term and the course and prognosis of the illness
are uncertain. Once families have redefined the illness and their total
situation, they may find that acquiring social support and seeking
spiritual support are more effective coping mechanisms. Redefining and.
acquiring more knowledge about the illness will not shorten its duration
nor affect the'course and prognosis. Although redefining and increasing
one's knowledge about the illness may decrease anxiety, the long term
nature of a chronic illness and the inherent uncertainties make it seem
'likely that the level of demands and demand intensity will remain high.
'Therefore the family needs to develop and use coping strategies that can

provide long term support. Social and spiritual support can be the

185
basis for such long term support strategies. The chronic illness
families did make greater use of acquiring social support than the
comparison families. In particular fathers in the chronic illness
families indicated a greater use of this coping response than fathers in
the comparison families. It may be that at the higher level of both
demands and demands intensity fathers need to be more actively involved
in acquiring social support for the family whereas with a lower level of
demands and demands intensity fathers may play less of a role in the
acquisition of social support. In particular families with chronically
ill children sought spiritual support in response to the demands. This
finding was significant for all subgroups by age and family role which
indicates that all family members clearly recognized this as a means of
coping and suggests that they may do this together as a family. The
high use of spiritual support in these families may be particularly
effective for dealing with the uncertainties of these illnesses.
Previous research on families with chronically ill children and other
families facing other long term stressors has found a greater use of
spiritual support in these families than families without a long term
stressor (McCubbin, 1979; Olson, McCubbin, Barnes, Larsen, Muxen, &
Hilson, 1983; Powers, Dill, Hauser, Noam, & Jacobson, 1985; Shapiro,
1983). When there is social ambiguity related to the stressful
situation religious faith may provide a reference point for social norms
and expectations (McCubbin, 1979; Olson et al., 1983).
Wm
All nine dimensions of family functioning were successfully
predicted by the model which supports its use as a conceptual framework

for studying family adaptation. Of the six adaptive dimensions of

186
family functioning religious emphasis showed a unique prediction
pattern, with the only significant predictor being the use of spiritual
support as a coping strategy. Religious emphasis also had fewer
significant interrelationships with the other dimensions of family
functioning than was found for the other dimensions. Religious emphasis
was positively related only to open communication and organization.
These findings suggest that this characteristic is associated with
adaptive family functioning but may be present more strongly in some
families than others. It may be the case that when present it supports
overall adaptive family functioning but that it is not a necessary
dimension for adaptive family functioning. This would be consistent
with earlier research findings of greater use of spiritual support in
families facing chronic stressors (Olson et al., 1983; Powers et al,
1985; Shapiro, 1983).

The other five adaptive dimensions of family functioning were
predicted by coping and perception of demands with resources having a
significant predictive value for cohesion and organization. In
contrast, the lack of resources had significant predictive value for all
three maladaptive dimensions of family functioning. The multiple
regression findings suggest that when resources are present they support
a greater number and wider range of coping strategies leading to
adaptive family functioning while the lack of resources appears to not
only have a negative effect on coping but also have a greater and more
direct effect on maladaptive family functioning. Another important
difference in the prediction of family functioning was found in
perception of demands. Uplifts intensity had significant predictive

value for the five adaptive dimensions excluding religious emphasis.

187
Hassles intensity had significant predictive value for all three
maladaptive dimensions. In contrast the predictive value of the
intensity of life events was scattered and sparse. This supports the
contention that day-to-day demands have an important impact on
adaptation (Kanner et al., 1987; Lazarus, 1980) and suggests that they
may be more relevant predictors of overall family adaptation than life
events.

The findings related to family functioning indicate that there are
few differences based solely on the presence of a chronically ill child.
0n nine dimensions of family functioning there were only two significant
differences by group. The chronic illness families scored higher on
family cohesion and religious emphasis. These findings would certainly
appear to be strengths in family functioning. High scores on family
cohesion in the measure used do not reflect enmeshment but positive
feelings about one another, being together, family interaction, and
doing things together without the rigid boundaries and interpersonal
intrusiveness present in an enmeshed family (Bloom, 1985). The
cohesiveness may reflect a talking and working together to deal with the
demands including such aspects as flexible family roles and expansion of
individuals roles when needed to meet the demands. Cohesion was
positively related to open communication, sociability, idealization, and
organization and negatively related to family conflict and disengagement
which illustrates its integral role in family adaptation. This would be
consistent with previous findings that effective parental coping led to
increased family cohesion and that family cohesion was an important
parameter in evaluating the effectiveness of the family's adaptation

particularly as it related to the maintenance of family stability and

188
integration (McCubbin et al., 1983a). It has also been found that
families who described high levels of stress as challenging rather than
overwhelming have higher scores on mutuality and more positive feelings
toward members of their families (Lowenthal & Chiriboga, 1975) which
further supports the adaptive quality of the high cohesion scores in the
chronic illness families of the present study. The higher levels of
religious emphasis are most likely a result of the high levels of
seeking spiritual support as a coping strategy for chronic stressors.
Spiritual support seems to contribute to maintaining the family unit,
individual self esteem, and aiding families in tolerating more chronic
conditions (McCubbin, 1979; Olson et al., 1983). Religion has also
shown a positive relationship with subjective well-being for individuals
(Diener, 1984). These findings support previous theoretical and
research conclusions that psychosocial problems in families with
chronically ill children are most likely to occur in families where
problems were present prior to the illness (Pless et al., 1972;
Steinhauer et al., 1974). Prior psychosocial problems would likely be
exacerbated by the demands of having a chronically ill child. For
families who are at high risk for psychosocial problems, the diagnosis
of a chronic illness and the subsequent demands may create enough
additional stress that psychosocial problems become apparent.
W

The findings of the current study are limited by a number of
factors. Although the measures for demands ask for retrospective
information, the data used in the current study is still cross—
sectional. In order to study family adaptation more effectively,

longitudinal data needs to be obtained. Nith longitudinal data,

189
demands, resources, perception of demands, and coping at one point in
time could be used to predict family functioning at a later point in
time. The relationship of family functioning at one point in time to
demands, resources, perception of demands, and coping at a later point
in time could be examined. This would provide a more accurate
investigation of the model and family adaptation as an on-going process.

The current study is also limited by the small number of families.
Originally, the study included the computation and examination of family
scores. However, this analysis was not performed since there was not a
large enough number of families to meaningfully examine the variables.
Additional data is still being collected so that an analysis of family
scores can be performed. It would also be ideal to have a larger number
of comparison families so that the matching can be accomplished without
any significant differences between the groups.

The style of medical management was purposely controlled in the
current study by recruiting the chronic illness group from the same
site. Style of medical management includes variables such as the amount
of information, input, and decision-making power given to the
chronically ill child and his family. This was felt to be an important
variable in relation to family adaptation and one that would confound
the current study. Investigation of the effect of style of medical
management on family adaptation to chronic childhood illness would be a
valuable contribution to both the research and intervention literature.
This type of study would need to be carried out with a large sample that
represents a broad geographic base.

The findings of the current study are further limited by the
reliability of the family functioning subscales.- This was evidenced by

190

the need to restructure the original subscales to obtain acceptable
levels of internal consistency. Although the reliabilities of the new
subscales were adequate, the internal consistency as measured.with
Cronbach's alpha was not strong. Future studies of family adaptation
may benefit from adopting a family functioning instrument that has been
used more extensively in this type of research and found to be sound.

Summer!

The overall findings of the analysis of variance support functional
adaptation in the families of chronically ill children. These families
report a higher level of demands and intensity of demands than families
with healthy children but the p0sitive and negative demands and their
respective intensities seem to have a relative equilibrium with a
slightly positive skew. The chronic illness families appear to be
dealing with these intense demands with their high level of coping
responses. Their coping responses are both greater in number and
broader in range than those used by the comparison families. In
particular, families with chronically ill children used coping responses
aimed at seeking spiritual support and acquiring social support. These
types of responses have the pdtential of providing long term support as
well as sharing the burden within and outside of the family. The
minimal differences on resources and family functioning between the two
groups of families suggests that the high number of intense demands is
not depleting the families' resources nor is it leading to dysfunctional
family functioning in the majority of families. The high level of
coping appears to be effective in maintaining positive family

functioning. Based on the findings, there is no evidence to suggest

191
that the presence of the chronic illness alone necessarily leads to
maladaptive family functioning.

Although research on effective adaptation is slowly beginning to
increase, it still accounts for a disproportionately small amount of the
literature relative to maladaptation. Research into family adaptation
is increasing even more slowly than that on individual adaptation. A
I comprehensive understanding of the adaptation process for both families
and individuals would provide a basis from which to examine the
deviations that lead to psychological disorders and dysfunctional
families. Longitudinal research would provide a more accurate picture
of adaptation over time including the impact of developmental
transitions and coping outcomes for the family and its individual
members. Although costly in terms of time and money, continued use
needs to be made of self report measures from all family members to
clarify father's and children's perception of and roles in this process.
Pathology focused research has made limited use of positive life events
and uplifts. The significant findings for uplifts in the current study
and the lack of knowledge about positive life events indicates that
positive experiences need to be included when investigating adaptation
as an on-going developmental process. In the current study the
controllability of demands was not measured. This may be of particular
importance in families with chronically ill children. The area of
controllability of demands has not been addressed in the family
adaptation research and could provide insight into whether families use
different coping strategies when faced with uncontrollable demands. A
clearer understanding of the complex relationships within the adaptation

process would provide guidance for preventive and promotive intervention

192
strategies for all health care providers. As the cost of health care in
the United States continues to rise, the focus upon as well as the need
and funding for prevention and health promotion will also continue to

rise.

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