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This is to certify that the
dissertation entitled
Families with Chronically ll 1 and Handi capped Chi ldren

and Nonaffected Children: Self-Esteem, Stressful Life

Events, Family Role Expectations and Family Relation-
ships

presented by

Linda Diane Lee Bond

has been accepted towards fulfillment
of the requirements for

Ph.D. degreein Family and Child Ecology

Major professor

Date 9/3/85

MS U is an Affirmatiw Action/Equal Opportunity Institution 0-12771

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FAMILIES WITH CHRONICALLY ILL AND HANDICAPPED CHILDREN
AND NONAFFECTED CHILDREN: SELF-ESTEEM, STRESSFUL LIFE

EVENTS, FAMILY ROLE EXPECTATIONS AND FAMILY RELATIONSHIPS

By

Linda Diane Lee Bond

A DISSERTATION

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

DOCTOR OF PHILOSOPHY
Department of Family and Child Ecology
1985

Copyright by
Linda Diane Lee Bond

1985

ABSTRACT

FAMILIES WITH CHRONICALLY ILL AND HANDICAPPED CHILDREN AND
NONAFFECTED CHILDREN: SELF-ESTEEM, STRESSFUL LIFE
EVENTS, FAMILY ROLE EXPECTATIONS AND FAMILY RELATIONSHIPS
By

Linda Diane Lee Bond

Data are available to suggest that the proportion of
children with some limitation in their activities has
dramatically increased over the past few years (Newacheck,
Budetti & McManus, 1984). The presencer of a disabled child
in a family is a potential stressor, causing families to
adapt if they are to meet the needs of all family members.
The degree of adaptation called for depends upon the type
and severity of the condition and is not the same for all
families (Earhart, 1984).

Thg_gggggp£ual framework selected for this study was.

 

 

 

 

 

family ecosystems. Intrafamily concepts were the primary

’f—P

2
focus of this study and included: 'self-esteem, stressful

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life events,dfami1y role expectations andeamily
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relationships.

 

Data for this study were drawn from a larger study, the
Michigan Early Adolescent Survey. One hundred and
ninety-seven families of the original 304 families met the
criteria for inclusion in this study. The central focus of
this study was the family and necessitated data from

fathers, mothers and adolescents. Families were divided by

Linda Diane Lee Bond

the presence of a chronically ill or handicapped child.
Statistical analysis included t tests and repeated measures
analysis of variance.

Fiyemmajor hypotheses were tested in this study.

 

 

Self-esteem was lower among the members in handicapped
families. The most significant differences were among
adolescents. Low numbers of stressful life events were
reported for both groups of families. The majority of
family members were traditional in their family role
expectations. The presence of a handicapped child did not
significantly influence these role attitudes. Family
relationships were positive in all the study families with
no significant differences between the two groups. The
findings of this study suggest that on the variables
measured, families with chronically ill and handicapped
children are very similar to families with nonaffected

children except in self-esteem.

Dedicated to the memory of our daughter
Kelly Lynn Bond
She taught our family about courage through her death

and about the pain of living with a dreaded disease.

iii

ACKNOWLEDGEMENTS

The course Of study leading to this final effort, the
dissertation, has been facilitated by many persons. Eileen
Earhart has seen me through my entire course of doctoral
study as a teacher, academic advisor and most importantly as
the chairperson of my dissertation committee. Her expertise
in families with handicapped members was invaluable as I
explored the literature to formulate my research questions
and then proceeded to study these families. The collegial
support of the research team from the Michigan Early
Adolescent Survey made this all an enjoyable undertaking.
Dr. Joanne Keith, Dr. Christine Nelson and Anita Covert
provided a collaborative environment which served as a
milieu for our growth as researchers and scholars.

One of the most rewarding experiences of my doctoral
study was the opportunity to have studied with the late Dr.
Beatrice Paolucci. Her scholarly abilities coupled with her
humane and unpretentious qualities will continue to serve as
ideals for me to emulate. Other members of my dissertation
committee are acknowledged for each has offered unique

contributions: Dr. Richard Featherstone (College of

iv

Education); Dr. Barbara Given, R.N. (College of Nursing);
and Dr. Dennis Keefe (College of Human Ecology).

The list of acknowledgements would not be complete with
out thanking Judy Pfaff for her computer expertise; Dianne
Longo for being a collaborator, but mostly for being a
friend; Beatrice Kalisch for her supportive friendship; and
my many students who continually challenge me and who keep
the excitment of nursing alive. Most of all thanks go to my
family, my husband Ron, our son Bradley and to Carl, these
years of study have been both a boon and a burden to them.
Finally, thanks are given to my parents, Audrey and Leonard
Lee who raised me in an environment where learning was

valued.

TABLE OF CONTENTS

LIST OF TABLES

I.

II.

III.

INTRODUCTION TO THE STUDY

Purpose of the study
Research Questions
Theory
Components of the Family Ecosystem
Assumptions
Definitions
Hypotheses
Limitations
Importance

THE REVIEW OF THE RELATED LITERATURE

Families with Chronically I11 and
Handicapped Children
Impact upon parents
Impact upon siblings
Stress and Coping
Family Relationships
Family Roles
Self-Esteem

METHODOLOGY
Human Subjects Protection
Sampling Procedures
An Overview
County Selection
School District Selection
Student Selection
Weighting the Sample
Michigan Early Adolescent Study Families
Early adolescents
Parents
Families
Instruments
Self-Esteem Inventory
Family Events Index
Family Role Scale
Family Relationships

vi

Page

viii

Families with Chronically Ill and

Handicapped Children 65
Data Analysis 66
IV. THE RESULTS 70
Characteristics of the Study Families 70
Differences in Self-Esteem 75
Differences in Stressful Life Events 83
Differences in Family Role Expectations 84
Differences in Family Relationships 88
Summary 91
V. SUMMARY, CONCLUSIONS AND RECOMMENDATIONS 94
Discussion of Findings 98
Family Ecosystems Theory 98
Self-Esteem 98
Stressful Life Events 100
Family Roles 102
Family Relationships 104
Conclusions 106
Recommendations lO7
APPENDICES
Appendix A 112
Appendix B 116
Appendix C 117
Appendix D 118
Appendix E 120
Appendix F 121
REFERENCES 125

vii

Table

10

11

LIST OF TABLES

Michigan Early Adolescent Survey:
Participating Counties (1983)

Characteristics of MEAS Families as Reported
by Fathers, Mothers and Adolescents (1983)

Demographic Characteristics of Study
Families

Repeated Measures Analysis of Variance

of Self-Esteem According to Fathers,
Mothers and Adolescents in Nonhandicapped
and Handicapped Families

t Tests for Self-Esteem for Fathers,
Mothers and Adolescents in Nonhandicapped
and Handicapped Families

Repeated Measures Analysis of Variance
for Self-Esteem for Fathers and Mothers
for Nonhandicapped and Handicapped
Families

Repeated Measures Analysis of Variance
for Self-Esteem of Mothers and Adolescents
for Nonhandicapped and Handicapped Families

Repeated Measures Analysis of Variance
for Self-Esteem of Fathers and Adolescents
for Nonhanciapped and Handicapped Families

Repeated Measures Analysis of Variance
for Stressful Life Events of Fathers,
Mothers and Adolescents for Nonhandicap
Handicapped Families

Repeated Measures Analysis of Variance

for Family Role Expectations of Fathers,
Mothers and Adolescents for Nonhandicapped
and Handicapped Families

t Tests of Family Relationships for

viii

Page

48

54

72

77

79

81

81

82

85

87

12

13

Adolescents in Nonhandicapped and
Handicapped Families 90

Repeated Measures Analysis of Variance of
Adolescent Relationships for Fathers

and Mothers in Nonhandicapped and

Handicapped Families 90

Summary of Hypotheses 93

Repeated Measures Analysis of Variance:
Self-Esteem According to Fathers, Mothers
and Adolescents 122

t Tests for Stressful Family Events of
Fathers, Mothers and Adolescents in
Nonhandicapped and Handicapped Families 122

Repeated Measures Analysis of Variance:

Family Role Expecataions According to

Fathers, Mothers and Adolescents in
Nonhandicapped and Handicapped Families 123

t Tests for Family Role Expectations of
Fathers, Mothers and Adolescents in
Nonhandicapped and Handicapped Families 123

Repeated Measures Analysis of Variance of

Family Role Expectations According to

Fathers and Mothers for Nonhandicapped and
Handicapped Families 124

Repeated Measures Analysis of Variance of

Family Role Expectations According to

Mothers and Adolescents for Nonhandicapped

and Handicapped Families 124

Repeated Measures Analysis of Variance of

Family Role Expectations According to

Fathers and Adolescents for Nonhandicapped

and Handicapped Families 125

t Tests for Adolescent Relationships Scores

of Fathers and Mothers in Nonhandicapped and
Handicapped Families 125

ix

Chapter I

INTRODUCTION TO THE STUDY

The incidence of children with chronic illness or
handicapping conditions has been estimated to be as high as
30 to 40 percent of all children if the conditions are
broadly defined to include hearing and speech problems along
with learning problems and behavior disorders (Mattsson,
1972). The presence of an affected child within a family
has the potential to be a constant stress, although the
nature and severity of the condition will influence, in
part, the impact on the family. The meaning derived from
the presence of a chronically ill or handicapped child will
be different for each family, and adaptation to the
situation will depend upon the family's ability to withstand
the crisis of the event and their ability to adapt to meet
the needs of all family members (Earhart, 1984).

Advances in medical science over the past few decades
have reduced infant mortality through better and more
sophisticated methods of prenatal, perinatal and neonatal
care; reduced the incidence of childhood deaths due to
contagious diseases; and instituted improved methods of
treatment to successfully prolong life of persons affected

with chronic diseases such as diabetes. In 1930, the infant

mortality rate was 65 per 1,000 live births, but by 1979
that rate had dramatically decreased to 13 per 1,000 live
births. Similarly, the death rate for young children was
564 per 100,000 in 1930 while in 1978 that figure was
reduced to 69. Accidents are now the leading cause of death
among young children (Kovar, 1982). One outcome of
aggressive medical interventions that may not have been
anticipated, has been to salvage children who might
otherwise have died. In some situations, the successes of
medical science are not necessarily without some costs to
families as well as society as a whole. The number of
children who now survive has increased, but ironically, so
has the number of children who have some type of long term
sequelae that can potentially have a negative impact upon
their lives as well as the lives of their families.
Newacheck, Budetti, and McManus (1984) noted:
Data from the National Health Interview Survey ...
suggest that the proportion of children with some
limitation of activity has doubled over the last two
decades. The degree of limitation of activity varies
from those who are unable to attend school, to those
who must attend special schools, to those who attend
regular schools, but are limited in their ability to
participate in sports and other recreational activities
(p. 232).
In the recent past families were Often advised by

well-meaning health care providers to institutionalize

children born with handicapping conditions.
Instituitionalization of children with mental and/or
physical defects, once an option, has now virtually ceased
to exist for most families. The movement away from
widespread use of custodial care institutions is relatively
recent. The numbers of institutions to warehouse the
defective and disabled members of society have been
significantly lowered. In 1960 Michigan, for example, had
13,000 residents in state developmental centers, whereas in
1984, only 2,600 remain ("M.R. state," 1984).
Deinstitutionalization has led to mainstreaming handicapped
individuals back into our communities, a practice not always
well accepted. Families are now encouraged to accept
responsibility for their children by caring for them in
their own homes. This caretaking can potentially be both a
positive and a negative force depending upon the family's
resources and the nature of the illness or disability.

Regardless of the severity of the chronic illness or

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the magnitude of the handicapping condition, a major

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influence on how each individual family is affected is in

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the way the family members 1nterpret or define their own

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situation. The onset or occurrence of a potentially
disabling condition in a child is the time at which crisis
is likely to occur, while the day to day management may
account for the long term stress to which the family must

adapt.

Family stress study has been greatly influenced by the

writings of Hill (1958). Hill described the occurrence of a
stress as follows, "The family's definition of the event
reflects partly the value system held by the family, partly
its previous experience in meeting crisis, and partly the
mechanisms employed in previous definition of events" (1958,
p. 145).

Research studies on families affected with chronically
ill or handicapped children provide considerable
information, but inconsistent findings. The negative
outcomes for these families have been reported as: higher
than normal stress levels for mothers (Bradshaw & Lawton,
1978; Burden, 1980; Dorner, 1975; Tew & Laurence, 1973);
lowered self-esteem for mothers (Cummings, Bailey & Rie,
1966) and fathers (Cummings, 1967); higher than average
divorce rates (Tew, Laurence, Payne & Rawnsley, 1977); and
maladjustment of the siblings (Cairns, Clark, Smith &
Lansky, 1979; Crain, Sussman & Weil, 1966; Gath, 1972, 1973;
Tew & Laurence, 1973). Conversely, studies exist where more
optimistic results have been reported: adequate family
coping (Korn, Chess & Fernandez, 1978); satisfactory marital
relationships with divorce rates no higher than national
norms (Buchanan, LaBarbera, Roelofs & Olson, 1979; Dorner,
1975; Freeston, 1971; Starr, 1981); relatively well
adjusted siblings (Cleveland & Miller, 1977; Gayton,
Friedman, Tavormina & Tucker, 1977; Pinyerd, 1983); and
successful parenting (Gallagher, Cross & Scharfman, 1980).

Evidence presented in the research regarding the

presence of a chronically ill or handicapped child in the
family is far from conclusive. Most of the studies have
been carried out using small numbers of subjects drawn from
clinical populations. Relatively few studies used control
groups for comparisons. In a number of the studies mothers
were used as the sole subjects. She was the spokesperson for
the entire family, but study results have usually been
reported as family data. Larson (1974)5988?$F39“?89E1Fhe
most apparent weaknessin family research is the reliance

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on the response of one family member. Safilios-Rothschild

-». ““1

-_ -H — .1

(1969) concurEd with this observation and described family
research in sociology as "wives' family" sociology.

When more than one family member is included in a
research study, differences begin to emerge. Ferreira
(1964) studied family triads on perceptivity and found
children to be more perceptive than their parents; parents
were more perceptive of same sex children; and the adult
partners in the family were about equal in perceptivity. In
contrast, Reiss and Oliveri (1983) stated, "we have noted
informally in the problem-solving task, and in clinical
work, that under tension families of adolescents often
split, with father moving closer to an adolescent daughter
and mother to an adolescent son" (p. 305).

Larson (1974) noted that it is advantageous to
igglgdfflallflfgmilyumembexswin a study if possible, as family
system perceptions are not congruous. Further, Larson

contended that children should be included in any study of

the family as they see family processes quite differently
than other family members. Klein (1983) emphatically
supported the use of the entire family as the primary unit
of analysis in family studies if the results are to be valid
and meaningful.

Evidence is emerging in the family research literature
to suggest that the use of multiple family members in any
study of the family will provide a more valid view of the

family. In this study, three family members, the father,

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the mother and one early adolescent child _were included to

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provide a broad perspective of their family situation. Each
subject, responding to similar items, supplied data to
provide a comprehensive picture of the family as a group in

the selected areas of self-esteem, stressful life events,

family role expectations, and family relationships.
Purpose of the Study

The purpose of this study was to determine if
differences exist between families with healthy, nonaffected
children and families with chronically ill and handicapped
children in the areas of self-esteem, stressful life—events
family role expectations, and family relationships. In view

of the diversity of existing research, individual responses

 

on the selected variables provided the basis to determine if?

thegghwergfidifferences between the two family types on the

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1dent1f1ed var1ables.

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Research Questions

1. Do individual family members (i.e. fathers, mothers and
adolescents) and families as a whole with chronically
ill or handicapped children differ in self-esteem from
individual family members and familes with nonaffected
children?

2. Do families with chronically ill or handicapped children
experience a different number of stressful life events
than families with nonaffected children?

3. Do individual family members and families as a whole
with chronically ill and handicapped children have
different family role expectations from individual
family members and families as a whole with nonaffected
children?

4. Do individual family members in families with
chronically ill or handicapped children differ in their
intrafamily relationships from individual family members

in families with nonaffected children?

Theory

The family ecosystems perspective served as the
conceptual framework for this study. This approach has been
recognized as a valid way to conceptualize the family
(Andrews, Bubolz & Paolucci. 1980; Holman & Burr, 1980).

A property of the family ecological perspective, that lends
particularly well to this study, is the recognition that the

family is the unit of central importance. Within the

context of the family ecosystem, the family is a unity of
interdependent individual members.
The family ecological_approach is derived from a

systems perspect1ve and ismrggtqd la £99108Y- Buckley

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(1967) was instrumental in transferring the concepts used to
explain systems functioning in the natural sciences to
sociology by applying them to humans. This way of viewing
the functioning of individuals and groups is now widely
accepted. The term ecosystem has been attributed to Tansley
(1935) and encompasses the biological and physical
environments in which humans reside and are dependent upon
to sustain life. The family ecosystems approach merges
these orientations into a holistic perspective that
encompasses the biological, the physical and psychosocial
aspects of the family and its various environments.
The concept of the family as an ecosystem reflects the
belief that family life and its immediate
environment... form a complex, dynamic living system
... By viewing the family as an ecosystem, one can
begin to understand how family life may be... the
product of environmental forces... (Melson, 1980, p.
1).
Components of the Family Ecosystem
Paolucci, Hall and Axinn (1977) characterized the
family ecosystem as being composed of organisms and

W

environments, which are interdependent. The organism
W " \m-' “M‘-

‘M “WW1”

 

 

or the family unit has also been referred to as the

environed unit (Andrews et al., 1980) and the family system
(Broderick & Smith, 1979; Bubolz & Whiren, 1984; Kantor &
Lehr, 1975; Melson, 1980). The family is composed of
individuals in certain structural positions, in dynamic
interaction with each other, and because of this unique
relationship of the members within the system, the total
family unit is influenced by changes that affect their
members.

The egvirgnment has been conceptualized as being

...

divided into three components (Hook & Paolucci, 1970).
First is the gatural environment which supplies all the
resources to maintain life such as air, water and food.
Second is the human constructed environment which includes
modifications made by humans of the natural environment's
physical and biological components and other social and
cultural constructions (Bubolz, Eichler, & Sontag, 1979).
The human~eonstructedmenvironmentflincludes not only
tangible components such as houses and modern machinery, but
also encompasses "such constructions as language, values,
norms, social patterns, systems, and institutions, which
provide the basis for communication, order and coordination

of human activities" (Andrews et al., 1980, p. 33). Third

is the human behavioral environment. In this context, the
_*\,/»*-— “A

Wfilfi.”

.1.___._

family is considered the environment for the individual.
The human behavioral environment is essential for meeting
biological and physical needs for love, relationships,

communication, knowledge, and self—fulfillment (Bubolz et

10

al., 1979).

The family is a unit of interacting individual members
which can be conceptualized as an environment as well as an
organism. The intrafamily environment is the milieu in
which the member's grow and develop as well as function.
The intrafamily environment provides the arena in which
youngsters first learn about themselves in relationship to
other family members and about the reciprocal nature of
those relationships. Within this family environment members
hold positions and enact the roles ascribed to particular
positions (Dudley & Keefe, 1978). Behaviors learned in the
family then form the basis for later interactions and
associations outside the family. The individual's
satisfaction, mood, self—esteem and personal growth are
directly related to their perception of that environment
(Insel & Moos, 1974). The family provides an environment
where individuals inside the system have a higher level of
interaction among themselves than with individuals outside
the system (Broderick & Smith, 1979). Therefore, the
reciprocity of these interactions influences how the
individual develops autonomy, self-confidence and
self-esteem (Insel & Moos, 1974). If high levels of stress
are present in the family environment, there is the
potential that individual development will be impaired and
the system's function endangered.

The last component of the overall framework is the

interaction between the family and the environment.

ll

Interactions occur when any component of the system itself
influences or acts upon the other which in turn can
stimulate some type of a reciprocal reaction. This implies
an exchange or transformation of energy which may enter or
leave the family system as information or matter. Families,
over time, develop patterns or rules that determine how
energy will be used under normal circumstances (Kantor &
Lehr, 1975; Paolucci et al., 1977). In times of
uncertainity or stress, the changing environment demands
higher levels of energy to enable the family system to adapt
and cope with change (Andrews et al., 1980). If the family
lacks the flexibility or resources to cope with the
perceived input into the system, stress results. Measured
amounts of stress have a positive effect and are growth
producing, while large amounts of stress have the potential
to place a strain upon families and their internal
relationships (Bubolz & Whiren, 1984). The intensity of the
stress can be overwhelming, so rather than having a positive
effect, the potential for disruption and total

disintegration of the system arises (Andrews et al., 1980).
Assumptions

1. All families in this study represent semi-open systems
whose boundaries allow variable levels of interaction
with the environments outside the family demonstrated by
their agreement to participate in the study.

2. The family is one of the environments for the

12

preadolescent individual and other members.
3. Changes affecting one family member affect all family

members.
Definitions

Family: a bonded unit of interacting and
interdependent persons who have some common goals and
resources, and for part of their life cycle, at least share
living space...families with different configurations of
age, sex, marital status and role patterns can be delineated
(Andrews et al., 1980, p. 32).

Self—Esteem: a personal judgment of worthiness that
is expressed in the attitudes the individual holds toward
himself (Coopersmith, 1967, p. 5).

Family Ecosystem: a semi-closed, mutually
interacting system of individuals characterized by long
term, initimate relationships (usually blood, marriage, or
adoption) and the complex set of environments that surround
and sustain them (Melson, 1980, p. 262; Paolucci et al.,
1977, p. 15).

Family Role Expectation: agreement by family members
regarding acceptable behaviors for enacting roles, usually
arising out of general societal consensus and tempered by
proscriptions from reference groups such as extended
family and religious organizations (Nye & Berardo, 1973,

p. 10).

Handicap: figuratively, any disadvantage that

13

renders success more difficult (Webster, 1961). Any mental,

physical or behavioral deficit that poses a barrier to the

individual.

Chronic Illness: a sickness or disease of long

 

duration (0501, 1973).

Hypotheses

Five major hypotheses were proposed for this study.

H1

H2

H3

H4

H5

There is no difference in self-esteem between
individual family members and families as a

whole with chronically ill and handicapped
children and individual family members and

families as a whole with nonaffected children.
There is no difference in stressful life events
between families with chronically ill and
handicapped children and families with nonaffected
children.

There is no difference in family role expectations
between individual family members and families as a
whole with chronically ill and handicapped children
and individual family members and families as a
whole with nonaffected children.

There is no difference in family relationships in
adolescents in families with chronically ill and
handicapped children and in families with
nonaffected children.

There is no difference in family relationships

14

between fathers and mothers in families with
chronically ill and handicapped children and in

families with nonaffected children.

Limitations

The classification of the families of the chronically
ill and handicapped into one category without regard for the
intensity of the condition is a major limitation of this
study. A family with a child who has severe physical and
mental impairments and a family with a child with episodic
asthma attacks may not have the same level of concern for
either the child's general welfare or the family's future.
Further, great differences may exist in the amount of energy
required to maintain the child both in terms of physical
care and the resources needed to maintain a state of optimal
health to promote growth and development. No attempt was
made in this study to directly measure the differences
between families with children with the various chronic
illnesses or handicapping conditions, if indeed there are
differences.

The study did provide a screening method to identify
families with a chronically ill or handicapped child.
Families were asked to respond positively if they had a
child with any one of a number of diseases and/or
handicapping conditions. The list was not intended to be
all inclusive. No question regarding the severity of the

conditions was posed, nor were parents asked directly to

15

judge the impact of the diagnosis upon the family.

Importance

The questions of how family units adapt to a
chronically ill or handicapped child along with the effects
on individual family members have not been adequately
addressed in the literature. There is some evidence to
suggest that these families do adapt and that they are able
to function in a healthy manner (Longo & Bond, 1984). Few
studies have been reported which compare the target group to
a control group to reach their conclusions.

In this study a nonclinical population, scientifically
selected from the entire pool of early adolescents attending
public and private school within the state of Michigan was
used. This methodology is based upon the assumption that
these families are representative of the state population
and also that the incidence of chronically ill and/or
handicapped children within the families is no different
than the general population.

No single diagnostic category was isolated as
criterion for entry into the study. Rather than focusing
upon the etiology of the disability, the purpose of this

“-—-—~.'—‘..- m— —,.,.,_. ...fi .....-

study was to compare families on a number of variables,
regardless of the disability or handicap, in an attempt to
better understand how the family unit is affected.

Early adolescents and their parents were included as

subjects in the study, thereby, providing information on the

16

variables from three perspectives. Few studies have been
reported using this method of data gathering, but rather
have generalized to the entire family based on the report of
a single member, usually the mother. The concept of family
data is gaining support. Schumm, Barnes, Bollman, Jurich,
and Milliken (in press) suggested that family variables will
be positively intercorrelated with each other as a
consequence of an underlying "family" factor. figgmparingmand

‘._.»

contrastiggmfihfiwindividualmfamilyumemhenal“responsesiL

/-

will be an important contribution,§9.thewfieldwof»familyh

\ m

research,and will add to our understanding of how families

 

‘1...— .,
~n't-w‘m “

cope with having a chronically ill or handicapped child.

Chapter II

THE REVIEW

OF THE RELATED LITERATURE

The review of the literature is organized into five
sections. In section one, selected literature related
to families with chronically ill and handicapped children
is reviewed. In section two, family stress and coping with
a particular emphasis on life events are addressed. In
section three, relationships in families with early
adolescent children are discussed. In section four, family
role expectations are reviewed, while in section five
self-esteem, particularly the developmental aspects, is
reviewed. The literature reviewed in this chapter was

selected for its relevance to this particular study.
Families with Chronically Ill and Handicapped Children

The presence of a child with a chronic illnesswgrwam

-q,__._..r-<. W

 

 

 

handicapmhashlong been recognizedflas_g stressor in the

‘2-J

 

cwhfi—y-._-_..‘. 11"...” _,.

family. The literature on these families has been confined
to two themes. First are the those writings reflective of
the notions of loss and sorrow suggested by Olshansky (1962)

and Solnit and Stark (1961). That is, families will not be

17

l8

able to adjust and will become dysfunctional, succumbing to
the pressure of having a disabled child. Second are the
studies and reports of a more optomistic orientation that
presume adaptation and coping are possible (Bristol, 1984;
Longo & Bond, 1984). These writings acknowledge that the
affected child is a stressor, but report ways in which
families are able to adapt. Gallagher, Cross and Scharfman
(1980) suggested that Ehg‘keywtonsucggfigfiglMERPiEHW9§XmR§
the family's ability to put this event into perspective by
not having it dominate every aspect of the family's life.
Venters (1981) proposed that~Eimefimay be an importantm"

M“ __
M" M~-“’-¢""“l‘ 'Ix-R" Inc—3‘ Jun-4M1“ " "'7' “Fr"

fagtggmin adaptatign, in that families are able to adjust
and mediate the stress of the illness by adjustment in
intrafamily processes and relationships.

Impact upon parents. Parents are faced with the loss
of their idealized child at the time of diagnosis (Gallagher
et al., 1980). Wikler (1981) suggested that for families
with mentally retarded children the stresses are exacerbated
by unexpected discrepancies between what might have been and
what is. Mattsson (1972) noted that with children affected
by chronic illness, concerns were related to the medical
care of the disease and possibly the life expectancy of the
child, but also to the expense of medical care, interference
with schooling and leisure activities, and in the long term
affects on expected normal adult activities such as career

and marriage.

Most writers agree that a chronically ill or

l9

handicapped child does pose a threat to the integrity and
functioning of the family system. Nevin (1979) suggested
that tDwisuem.-..x_9.122 $9.11.,shirtwbsgiesa...E.he8.9131513? U
EhgwnandiLiQnmfigiwamauntioim .fifimincutredAM, Disagreement
exists in identifying what family effects can be
precipitated by the presence of a disabled child. Several
investigators have presented evidence to support the notion
of successful coping. The presence of a_§;rgggw§ggial
support netwprk was identified by Schilling, Gilchrist and
Schenke (1984) as amggggialeggtgrwimncnpigg. They
identified support groups as important primarily because
members have a common bond through their affected children
and a mutual need to share via the group process.
Gallagher, Cross and Scharfman (1981) supported the benefit
of both personal and professional networks in coping as do
others (Buchanan et al., 1979; Kazak & Marvin, 1984).

Not all studies reviewed agreed upon the value of
support networks outside the family. Bradshaw and Lawton
(1978), for example, disagreed with these findings. They
suggested that outside support in the form of personal
support or goods did not significantly alter the stress
levels of mothers of severely handicapped children.

Intrafamily processes have also been identified as
factors in coping. _Rgl§‘jlexiblity_with both spouses
involved in child care and family maintenance is one

component (Gallagher, Beckman-Bell & Cross, 1983; Gallagher,

Scharfman & Bristol, 1982). Role adjustment was the term

“._ r” ..v

 

“‘-_—"— _.,._-.

20

applied to families noted to adhere more rigorously to
traditional roles, that is the mother in the home in the
caretaker role while the father has little responsibility
for the care of the child, but spends his time to provide
financially for the family (Kazak & Marvin, 1984). The
maintenance of traditional patterns of family role behaviors
may provide an element of stability in a situation devoid

of traditional markers, thereby supplying a resource for
coping. Faber (1959) acknowledged the dynamic nature of
family roles as a positive coping measure. He further noted
that in cases of mentally retarded children, the
developmental progression of the parental role would be
arrested at a stage that fit the mental age of the dependent
child. Lack of progress through the stages of family
development can be an added stressor when the family
compares their situation with their reference group. The
discontinunity between individual development and family
development increases with the passing of time.

Marital satisfaction has been identified as an
important element in a family's ability to cope with a
disabled child (Friedrich, 1979; Gallagher et al., 1981).
Martin (1975) studied marital breakdown using three groups:
families with a spina bifida child; families with a
diabetic child; and families using an ambulatory pediatric
clinic. The findings suggested that families of spina
bifida children had divorce rates comparable to the general

population and that marriages which did end were unstable

21

prior to the birth of the spina bifida child. Martin
further noted that marriages which remained intact were
reported as better than average for the study. The work of
Kazak and Marvin (1984) also supported the notion that
families of handicapped children do have intact and highly
satisfactory marriages.

Impact upon siblings. Evidence presented in the

 

studies focusing on siblings is mixed. Few studies have
used the siblings themselves as subjects, but rather have
relied on information supplied by parents and teachers.
Control groups have been used in only a few studies. Gath
(1972; 1973) noted no significant differences between the
behavior of siblings of children with Down's Syndrome and
the siblings of cleft lip children when those two groups
were compared to the siblings of normal children.
Conversely, Tew and Laurence (1973) purported the frequency
of maladjustment scores in siblings of spina bifida children
to be four times that of the control group (N=35, 9;
p=<0.001). Crain, Sussman and Weil (1966) in a study of
diabetic children and the siblings of diabetic children,
concluded that the mother-child relationship was closer with
the affected child, possibly because she was playing out her
perception of the "good mother" role. The energy expended
in that relationship resulted in less attention to the well
siblings which in effect handicapped them due to a lack of
maternal attention. LaVigne and Ryan (1979) focused upon

subjects from three clinics and one normal healthy group via

22

a behavioral questionnaire completed by the parents. Their
results suggested that siblings of chronically ill children
are more at risk for behavioral problems which may be due,
in part, to a decrease in parental attention.

Two descriptive studies related information elicited
directly from the siblings of chronically ill children and
have provided some additional insights into sibling's
perceptions of their situations. Iles (1979) studied
siblings of cancer patients, in various stages of the
disease, and summed up her findings in terms of gains and
losses. Gains were identified as increased understanding of
the parents' dilemma and of the disease process. Loses

\M—m ..

included disturbed interpersonal relationships both with the“

‘ M ’._- fl“... ....Wmflwv-‘y-H‘xfi-l- _.

--“-.~v ----- —

Parents and Pb? illSiblins as well as fggliaas 0f

...-\_r~_fl_ ’._—

 

frustration, isolation and rejection. Pinyerd (1983)

——\_‘
M-u—d

 

‘._,

suggested that families can develop coping mechanisms to
deal with the disease condition, but that a danger existed
as many parents were not aware of the concerns of their well
children, thereby inadvertently neglecting them.

Evidence does exist to suggest that a chronically ill

or handicapped child does impose stress upon a family

 

 

system. Mothers may be the most vulnerable family members

aura-.... WMn—Wr.“

 

 

mun"...

(Kazak & Marvin, 1984) and feel overwhelmed by the demands
of the child when coupled with other family
responsibilities. Fathers want to be included in the
child's care, but due to circumstances within the family may

be distanced from the day to day routines (Gallagher et al.,

23

1981). The affected child, if an adolescent, may need to
have an active role in management of his/her own care to
assimilate the impact of the condition (Crummette, 1983).
Siblings are at risk for behavioral problems. The stress
associated with having a disabled sibling may be
proportional to the severity of the handicap. Also, parents
may be oblivious to the needs and concerns of their well
children. In the birth order, the older female and the
younger male siblings are the most frequent targets for
unrealistic parental expectations, perhaps to fulfill the
parent's perceptions of what might have been the role of the
disabled child (Breslau, Weitzman & Messenger, 1981;
Cleveland & Miller, 1977).

Much of the research on families of chronically ill and
handicapped children is methodologically weak. Samples are
often small and seldom are comparisons made with control
groups. The majority of studies have been on subjects
drawn from clinical settings, possibly because dysfunctional
families attract the attention of health care providers
(Kazak & Marvin, 1984). Fathers and children have been
almost totally excluded from the studies, with most studies
relying upon the report of the mother as informant for the
entire family, however, results were often reported as

family data.

Stress and Coping

Burr (1982) described family stress as "an event that

24

produces change in the family social system... anything that
changes some aspect of the system such as boundaries,
structure, goals, processes, roles or values..." (p. 7).

The popular connotation is that stress is bad, a negative
experience (Antonovsky, 1979). Some types of stress are
negative and threaten the well-being of the family, while
other types of stress are growth producing. Writers have
dichotomized stress into two categories, normative and
nonnormative. For example:

' family social

Under the general rubric of "stress,'
scientists have made a concerted effort to document the
normative stressor events... including predictable
developmental changes over the life span in individual
members of the family unit and in the family unit as a
whole... and nonnormative stressor events... including
unanticipated situational family experiences, which
usually place the family in a state of instability and
which call for some creative effort to cope with the

situation. (McCubbin, Cauble and Patterson, 1982,

p. XII)

The family system is constantly adjusting to the impact
of some type of stressful situation. Low levels of stress
can serve as a stimulus for growth and to strengthen the
relationships within the family unit. Normative life-events
or stressors should lead to growth through adjustments
within the system (Boss, 1980). Olsen characterized

"normative stressors as the demands faced over the life

25

cycle...described in terms of family transitions, family
passages, family developmental tasks and family life events"
(Olsen, McCubbin, Barnes, Larsen, Muxen, and Wilson, 1983,
p. 120).

While in the midst of mutiple normative stressors,
Antonovsky (1979) suggested that groups or families are only
vulnerable to breakdown or disintegration if they are
experiencing an overload, that is, internal conflicts and
disorganization simultaneously coupled with large amounts of
external stress. Families do attempt to maintain the system
in a balanced state or homeostasis. This is usually
possible providing the magnitude and multiplicity of the
stressors are not too great.

Family stress is identified as a tension state that
arises from either actual or perceived demands that call for
a degree of adjustment or adaptation (Antonovsky, 1979;
Melson, 1980; Olsen et al., 1983). Ihg_source of tension 3:,—

W

strain i§w£b§m§££33§9£;fi.ASide from those changes normally
occurring in families across the life cycle, a variety of
unexpected events also occur. The impact of nonnormative
events is not the same for all families and is likely to be
tempered by a variety of factors. The internal state of the
organism or the family has already been presented as one
factor.

A second factor concerns the "subjective definition" of

a situation (Boss, 1980) or how the family defines the

seriousness of an event (Olsen et al., 1983). Researchers,

26

concerned with the impact of life events, have attempted to
quantify these events to aid in understanding the impact
upon individuals and families. Holmes and Rahe (1967)
developed the Social Readjustment Scale (SRS), one example
of a way to measure the impact of nonnormative events.

Study participants were asked to rate the seriousness of a
number of life events. The high consensus among their study
subjects suggested those items have similar meaning to all
regardless of demographic, cultural, religious or other
differences. One particular correlation for the Holmes and
Rahe scale has been cited, that is, the relationship between
magnitude of the score and the occurrence of physical
illness. Minour and Holmes (1967) suggested that from their
studies the "SRS achieved etiological significance as a
necessary, but not sufficient cause of illness and
accounted, in part, for time of onset of disease" (p. 219).
Despite a challenge by Brown (1974) to the validity of
retrospective recall about life events and therefore the
usefulness of instruments in prediction of illness, scales
such as Holmes and Rahe's continue to appear both in the
scientific and the popular literature.

A third factor cited as influencing the impact of
stress on a family has been characterized as "pile-up:
(McCubbin & Patterson, 1982). Pile-up is a term for the
additive effect, that is, the addition of a new event
coupled with an already stressful situation which has

the potential to disrupt the system. For example, families

27

who continuously deal with high levels of stress such as
having a chronically ill family member may not be able to
withstand the effects of unemployment. The cumulative
effect of continuous stress punctuated by additional life
events contribute to the phenomenon of pile-up. "Life
events normative and nonnormative, that are experienced by
the family as a whole or by any member are all added
together to determine the magnitude of a family's life
change" (Olsen et al., 1983, p. 20).

Coping strategies, or what people do to feel better in
times of stress, are frequently called into play (Pearlin &
Schooler, 1978). Antonovsky (1979) identified these
responses as generalized resistance resources (GRR) and
described them as characteristics of the group that can
facilitate effective tension management either by avoiding
the stressors completely or if encountered, dealing with the
stressor in a direct manner. Coping resources are not
limited to a single domain, but rather encompass such areas
as cognition, emotions, biological resources, and material

resources SUCh as money.

Olsen and associates (1983) divided coping strategies

 

 

 

into two categories, internal and external. Internal
sources for the individual include psychological and
cognitive processes to develop explanations for stressors.
At a family unit level, internal system adjustment is

evidenced if family members are able to be flexible in their

roles and willing to assume the role of another, either

28

temporarily (Boss, 1980) or in the case of prolonged stress,
family members may need to assume new roles on a more
permanent basis to maintain stability and unity (McCubbin &
Patterson, 1982). Strict adherence to traditional gender
roles has been associated with negative coping, thereby
supporting the notion of role flexibility as a positive
coping resource (Patterson & McCubbin, 1984). Additional
internal resources identified with coping are high levels of
self-reliance and self—esteem for the individual family
members along with maintaining family integration (McCubbin
& Patterson, 1982).

External coping resources for a family include social
support of a wide variety. Andrews, Bubolz and Paolucci
(1980) described the importance of links between the family
and support systems. Those were subdivided into three
categories: formal support systems such as social service,
health care agencies or those organizations which provide
the family with goods and services; nonformal support
systems such as clubs and support groups; and the informal
support system comprised of relatives and friends. In
addition to a strong social support network, families must
have insights to recognize their need of assistance from the
formal system and then be prepared to accept the help
offered (Antonovsky, 1979; Olsen et al., 1983). Reiss and
Olveri (1980) studied ways to assess a family's coping
ability. They submitted that families use two types of

coping resources: (1) strategies composed of everyday or

29

usual routines to provide stability through a recognized
pattern of behaviors and (2) extraordinary strategies
including novelty responses such as guessing to cope with
unusual events.

Pearlin and Schooler (1978) suggested that not all
coping strategies will be successful. They cited several
reasons for altered coping including: failure to recognize
the source of stress; lack of skills or knowledge to
overcome the problem; and situations that are impervious to
all coping efforts and will remain despite whatever tactics
are employed. In such cases, it was suggested that a
process of internal cognitive activity be employed to
explain away the stress.

Coping is a complex process that is employed by the
family to maintain the system in a state of equilibrium.
Families have a limited tolerance for stress and strain, so
must call coping strategies into action at frequent
intervals. Families with high levels of internal and
external coping resources are most resilient. Those
families can overcome stress in a way that causes them to
grow and become a stronger unit. Conversely, families with
low levels of coping resources are vulnerable to the strain

which can lead to disorganization and possible demise.

Family Relationships

The intrafamily system is a complex of interrelating

individuals who have dual responsibility; (1) to maintain

30

the family system and its integrity and (2) to themselves
for their own development and self-interests (Kantor & Lehr,
1975). Families with children have varying levels of
complexity depending in part on the number of children and
their ages. The developmental tasks of children as
identified by Erikson (1964) and others involve increasing
self-reliance and relationships with persons outside the
family. Large families can have members in different life
stages, each with its unique set of tasks and each adding a
degree of complexity to the intrafamily system (Aldous,
1978).

The family is comprised of three subsystems: ~Ehg“
parental system, thgfisibling~system, and the_parent-child
system (Schvaneveldt & Ihinger, 1979). The relationships
within each of these subsystems influence the relationship
of the others. Parents in this society feel a sense of
responsibility for the care, nurturing and socialization of
their children. Children in turn, are dependent upon their
parents for physical and emotional support. As children
reach the stage of adolescence, the family influence on the
child seems to wane while peers become an important part
of the youth's life (Hamburg, 1974).

The parental relationship has a strong influence over
the other intrafamily relationships. Parents are expected
to be role models for their children; to set the tone for
how others in the family should relate to each other and

to persons outside the family system. The family

31

environment usually considered best for optimal development
of all members involves the intact nuclear family where a
positive parental relationship has a history that precedes
the addition of the first child. Parish, Dostal and Parish
(1981) studied children's evaluation of self relationship to
their families. Their subjects were 284 children in the
fifth through the eighth grades from families that were
classified as happy or unhappy and intact or divorrced.
Their results suggested that females from happy, intact
families have the highest self-concept contrasted with the
lowest self concept attributed to boys from unhappy,
divorced families.

TEE_§EB£££§~§EBEXEEEB_15 established with the addition
of the second child. The interrelationship of the siblings
is complex and depends upon the number and ages of the
children. Schvaneveldt and Ihinger (1979) reviewed the
sibling literature. One criticism offered by these authors
was the inconsistency in terminology describing the sibling
subsystem such as birth order, that is who are singletons
versus other familial positions of children: oldest, middle
or youngest. Regardless of author discrepancies, these
writers noted that the presence of children influences
family relationships and that the larger the family, the
more complex the intrafamily relationships. Siblings in
large families tend to be creative in their roles to gain a
unique identity within the family. Since only one child can

be the youngest or oldest sibling, other roles emerge such

32

as the most studious, the best athlete or the most obnoxious
(Bossard & Boll, 1960 quoted in Schvaneveldt & Ihinger,
1979).

Siblings relate to each other in ways that may seem
mysterious. Despite what appears as attention—seeking
behaviors, that is fighting and verbal barrage, there exists
a bond between the siblings. Siblings develop relationships
and establish boundaries that may be known only by them, but
nevertheless, exist. Siblings separated by large age gaps
will be less likely to form a close bond.

The parent-child subsystem may not receive enough
attention by investigators during the adolescent phase of
development. K108 and Paddock (1978) were critical of
Erikson's omission of the parental relationship during the
adolescent and young adult phases of development. They
noted that normal adolescents from middle-class families
considered their bonds to their parents very important.
Youth rely upon their parents for advice and counsel
regardless of their increasing interactions outside the
family system. Belsky, Lerner and Spanier (1984) supported
the notion of continued interdependence between adolescents
and their parents. They suggested that adolescents and
parents do not have major differences in either attitudes or
values.

A study of family relationships by Jessop (1981)
purported that adolescents and parents tend to be homogenous

in their degree of concordance about family life. In that

33

study, each participant tended to idealize or enlarge upon
their individual contribution to the family relationship by
answering in the direction they perceived most acceptable to
onlookers.

Several researchers have suggested that the well-being
of adolescents is positively related to the perceived
quality of the parental relationship. The notions of
attachment postulated by Bowlby (1969) and others, were
applied to the adolescent-parent relationship by Greenberg,
Siegel and Leitch (1983) as they examined the differential
effects of perceived parent and peer relationships on the
self-concept of the adolescent. That study supported the
continued importance of a strong parental bond. Adolescents
with poor adjustment resulting from weak attachment were
more vulnerable to life change, that is the effects of high
stress were modulated by a positively perceived

parent-adolescent relationship.
Family Roles

...a role is doing what one is expected to do. Role
information includes who is to do what, when, and how
often, as well as what kinds of attitudes each is to
maintain toward the other and the environment. In the
family, information of this kind helps define the
obligations and rights of each family member and of the

family as a unit. (Paolucci et al., 1977, p. 76)

Family roles are fairly universal in type or variety,

34

but how family roles are enacted is particular to individual
family units. Familial roles may appear to be constant, but
Nye and Berardo (1973) contended this was not true and that
these roles are in a constant state of flux, both within the
family as well as within society in general. Normal life
events influence role behavior. Campbell (1970) studied
family role changes as children were added to a family.
Those findings supported the notion that additional children
contribute added dimensions to the parental role. Mother's
work loads increased proportionately to the number of
children. Campbell further suggested that fathers in his
study stayed relatively uninvolved with the family until
there were several children, at which time fathers became
more involved with childrearing decisions and at the same
time, mothers became more active in family decision—making.
Family roles can be enacted in three ways: (1)
traditional or segregation of men's and women's work with
shared child rearing, (2) egalitarian or androgenous family
roles where all tasks are shared without regard for
sex-stereotyping, and (3) interchangability of roles or
tasks ascribed to a role (Nye & Berardo, 1973). Despite
changing roles, particularly for women, elements of
traditional beliefs still permeate women's thinking.
Ambivalence may be one reason for the low numbers of women
in the upper managerial levels of the work force.
Peterson-Hardt and Burlin (1979) studied occupational roles

and familial roles to gain some understanding of the paucity

35

of female executives. Women in that study were described as
not as motivated to succeed in business as men, but also
that women had less time and energy to devote to a career
because of unequal family role demands. This supports a
popular notion, that even in more egalitarian households,
women may still assume major responsibility for the family.
The homemaker role has recently gained recognition.
Prior to the recent technological explosion, women's
familial roles were labor intensive, demanding a great deal
of time and energy to fulfill. The current availability of
labor saving devices and the role of the education system in
socialization of children are but two reasons that make it
easier for women to expand their number of roles to include
some roles traditionally ascribed to males including
employment outside the home (Rollings & Nye, 1979). At the
same time, men are seen as more active participants within
the family. Changes in women's roles will necessitate
changes in the roles of all other family members (Campbell,
1970; Paolucci et al., 1977), that is more flexible role
relationships and shared power which lead to an optimal
environment for personal growth and integrity of the system
(Pratt, 1976).
Women continue to experience conflict regarding work
roles outside the home. Despite the large number of
‘vomen in the work force, a perception of censure still
I>lagues many women. The notion that it is all right to work

51 "little" to help get the extras is fairly acceptable,

36

providing, of course, there are no small children (Dowdal,
1974). Attitudes towards work and family roles are part of
a woman's basic identity and are strongly influenced by
factors such as religion, social class, and national origin.
Education, socioeconomic and occupational status are factors
that temper, to some extent, attitudes towards work (Dowdal,
1974; Nye & Berardo, 1973; Peterson-Hardt & Burlin, 1979).
That is, people with more education, holding white collar
jobs who are in the middle socioeconomic class are more
accepting of careers and out of home employment for women.

The roles of adolescent children within the family

 

 

__,..__ “._ \

receive less attention in the literature than do adults

_,.—.- q, _
Mmgm —~..——-.._.._ 5L—‘Mmm.1_~.. M #7 who—cw
" ...-v

 

roles. Hill (1980) suggested that changes in early
adolescents are not only biologically based, but also, are
mediated by the same situational variables that affect
adults including family, peers, and social class.
Adolescents are usually given a more active role in
intrafamily processes such as decision—making. Increases in
physical size and cognitive ability give children more
credibility and leads quite naturally to a more active role
in family affairs. Intrafamily experiences continue to be
important for adolescents and help them to confirm their
sense of identity. Middle-class youth, particularly, tended
to comply with their parents' values and standards on the
various aspects of life both inside and outside the family
(Hamburg, 1974).

Research reported on family roles has often used data

37

from husbands and wives. Previous research suggested that
few differences exist between husbands and wives in their
perceptions of family role enactment (Grandbois & Willett,
1970). In those studies, much of the data has been reported
as aggregate data, that is all husbands and all wives in the
study. Grandbois and Willett challenged that method of
analysis and suggested that only by looking at individual
family units will subtle differences begin to emerge. An
earlier study by Maxwell, Connor and Walters (1961)
supported the methodology of gathering data from several
family members as a way to better understand role
performance. Their study indicated considerable similarity
between spouses on parental role performance, but noted that
adolescent responses provided an added dimension to the
scoring on relationships. Adolescents generally viewed
their relationship with their parents as more favorable than
did the parents, suggesting that parents may be more
affected by the changes occurring at adolescence than their
children. Larson (1974) concurred that children may see
relationships differently than parents. Spouses tend to be
similar in their appraisal of power in families, but
children viewed the father as more powerful than the mother.
To understand intrafamily processes and attitudes toward
role enactment, research studies must include children's

opinions to provide a comprehensive picture.

38

Self-Esteem

Self—esteem is the feelings of regard that an
individual holds towards himself. Rosenberg (1965)
suggested that self—esteem is a value judgment and consists
of both favorable as well as unfavorable orientation towards
the self. Self-esteem is manifest in the behaviors one
exhibits as s/he presents himself or interacts with others.
Children develop self-esteem along with the other facets of
their cognitive and affective selves. Wylie (1979) in a
critical review of the literature on self-esteem, devoted
considerable attention to self-esteem across the life span.
Self-esteem appears to be well-developed by early childhood
and then changes relatively little across the life of the
individual.

The numbers of studies, sizes of samples, and the

consistency among the more methodologically adequate

studies (employing commonly used self-report test)
suggest that these null trends represent a true lack of
association in the age range studied between any one of
these types of self regard scores and age. (Wylie,
1979; p. 26)
Savin-Williams and Demo (1983) challenged the practice of
using single administration measures of self-esteem. These
authors contended that longitudinal studies are necessary to
detect changes over time. Their study used a variety of
Eitandard self-report and observational measures to study

adolescents over a period of several years. These

39

investigators supported the notion that self-esteem is
consistent overtime, being more influenced by personality
characteristics than by environmental influences.

Despite evidence in support of the stability of
self-esteem over time, doubt may exist regarding the period
of adolescence. Adolescence has been referred to as a
crisis period, a period of high stress, a time of
disorganization in behaviors and attitudes, with these
notions being perpetuated in the popular literature (Offer,
Ostrov & Howard, 1981).

Adolescence was conceptualized as a time of turmoil
resulting in SUpport for several of the currently accepted
stereotypes (Simmons, Rosenberg & Rosenberg, 1973). Subjects
in that study had a lowered self-image, and more negative
feelings about themselves at ages 12-14 than at ages 8-11
years. It was further suggested, that while self-esteem
does not increase appreciably in late adolescence, youth
become more realistic in their expectations of self thus
mediating their scores. This evidence, while interesting,
is not strong enough to refute the works cited earlier in
support of a constant predictable development of self-esteem
across the life time of an individual (Savin—Williams et
al., 1983; Wylie, 1979).

Individual development of self-esteem is first
influenced by parents, then later by teachers and peers
((Doopersmith, 1981). Even though children's associations

Cilange as they become older, parents continue to wield a

40

strong influence over their child's development. A
supportive, caring environment is important to the
development of positive self-esteem. Adolescents value
their parents approval and alter their behavior to meet
their parents' expectations (Bledsoe & Wiggins, 1973;
Coopersmith, 1967).

Positive self-regard is related to life experiences
which involve family, peers and other associations
(Coopersmith, 1959). The environments in which an
individual develops are many. For children this begins
in the family. Considerable evidence exists to support
optimal development of self-esteem by the child and is
related to patterns of family communication (Matteson,
1974); positive parental perceptions (Bledsoe et al., 1973);
close parental relationships (Hollender, 1973); level of
parental regard (Wylie, 1979); and a positive view of
parenthood (Coopersmith, 1967). "The self-esteem behavior
that the individual displays is presumably based, to a great
extent, upon his prior positive and negative experiences "
(Coopersmith, 1959, p. 93).

Self-esteem scores were found to decrease in youth
moving from elementary to junior high school in one study.
The decline in scores remained even when other factors were
controlled, suggesting this was a stressful period for the
study subjects (Simmons et al., 1973). Factors that lead to
an unstable family environment such as divorce or

\Jnemployment are also associated with low self-esteem scores

41

(Coopersmith, 1967). Conversely, Wylie (1979) in
summarizing the relationship between the family and the
child's level of self-esteem suggested that while many
studies purport a relationship between self-esteem levels
and family variables, scant evidence exists to support this.
She emphatically contended that no evidence exists to
support variations in self-esteem related to birth order or
father absence.

Positive self—esteem in parents is likely to produce
positive self-esteem in their offspring. Parents who hold
themselves in positive regard are more receptive to allowing
children a more active role in family functioning. Matteson
(1974) suggested that adolescent perceptions of parental
communications with them is strongly associated with
adolescent self-esteem. The low self-esteem adolescents in
that study perceived parent-youth communication less
positively than their parent. Parents tend to be positive
in their perceptions about adolescents and in agreement over
their individual rating (Bledsoe et al., 1973). Adolescents
who have a close relationship with their father have higher
self-esteem (Hollender, 1973). Children with high
self-esteem have parents who provide them with experiences
where they can be successful, thereby further enchancing
their levels of self-esteem (Coopersmith, 1981). Evidence
has been presented that suggests congruence between parental
and children's levels of self-esteem. Studies reviewed make

scant reference to intrafamily concurrence on self-esteem,

42

but rather highlight specific dyad relationships. The
inference one might make is that high self—esteem by more
than one member of a family should mean high levels for all
family members.

Self-esteem is characterized as multidimensional and
too complex to test with a single measure (Savin—Williams &
Demo, 1983). Further, the particular facet of self—esteem
that is of interest should be identified and then an
appropriate instrument selected (Bedeian & Zmud, 1977).
Self-report is commonly used to measure the experienced
self. Instruments by Coopersmith (Coopersmith Self-Esteem
Inventory, SEI) and Rosenberg (Rosenberg Self-Esteem Scale,
RSE) are commonly used. Both instruments were constructed
to be used with children. Coopersmith's (1981) SEI has been
adapted to include a Short Form and an Adult Form.
Investigators who firmly believe in the multidimensionality
of self-esteem (Bedeian et al., 1977; Savin-Williams, et
al., 1983) challenge the use of single comprehensive
instruments. Despite this challenge, the single measure
instruments remain in use. The challenge by Savin-Williams
and Demo (1983) to use multiple measures is interesting
particularly because they found a strong correlation between
the experienced and the presented self along with stability
of scores over time. Studies reviewed here do not present
sufficient evidence to confirm or negate the use of multiple
instruments over the common practice of using a single

instrument to measure self-esteem.

Chapter III

METHODOLOGY

The purpose of this study was to examine the
differences between families with a chronically ill or
handicapped child and families with nonaffected children on

M

selected intrafamily variables; self-esteem, stressful life

 

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Data from these variables were obtained from the Michigan
Early Adolescent Survey (MEAS). MEAS was supported by
funding from the Michigan Agricultural Experiment Station
and the Michigan Cooperative Extension Service. The project
was carried out by the Department of Family and Child
Ecology and 4-H Youth Programs, Michigan State University,
East Lansing, Michigan.

MEAS was a cross—sectional survey of 304 early
adolescents and their parents. Respondents were assessed in
a structured interview conducted in the family's home.

Study data included written responses by parents to a survey
questionnaire; verbal responses from youth to survey
questions, which were recorded by trained interviewers; and

verbal responses by parents to a number of household

resident questions on a household questionnaire, also

43

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44

recorded by the trained interviewer. Interviewers were
instructed to conduct the questioning of the adolescent at
the same time as the adult family members completed the
written questionnaire, but in a location separate from the
adults for privacy and to insure confidentiality of the
adolescent responses.

Interviewers were residents of the participating
counties and were recruited into the study by local county
4-H officials. The interviewers, as volunteers, were
prepared for their role during ten hours of training.
Training was conducted by the primary research staff in
February, 1983. The MEAS study was explained in some detail
so each interviewer would understand the purposes of the
study and the tools that would be used in carrying out the
interview process. Training involved: information
dissemination on early adolescence and interviewing
techniques, role playing to become familiar with the
interviewer role, practice with interviewing adolescents in
a group setting, and critique of video taped interviews.

Potential study families were contacted with an”
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introductory letter to_ explainfltheusurleymand to request
EESEEWP§I§$EEP£LiQnJ Families were instructed that an
interviewer would contact them by telephone to confirm the
family's willingness to participate in the study and to
schedule an interview appointment. Most interviews were

completed by June, 1983, although a few interviews were

delayed until September, 1983, due to staffing time

45

shortages in local 4-H offices.

Human Subjects Protection

Once the study, the Michigan Early Adolescent Survey,
was designed, it was submitted for approval to the
Universtiy Committee on Research Involving Human Subjects.
Data collection was started when approval was granted that

confirmed protection of the rights of sample subjects.

Sampling Procedures

An Overview

Early adolescent subjects for this study were drawn
from the population of Michigan youth in grades five through
eight, who lived in family households and whose names
appeared on the official Department of Education head count
record of public and private schools for the 1982-1983
school year. Stratified multi-stage cluster sampling was
used to identify subjects for the study.

The sample was chosen using an equal probability
selection method. This method insured that state youth
meeting the selection criteria had an equal probability of
being drawn for inclusion in the study. This probability
sampling is necessary if the results of the study are to be
generalized to a larger population. Cornfield and Tukey
(1956) made a distinction between a statistical
generalization, dependent upon random sampling, and a

nonstatistical generalization, which relies upon a thorough

46

knowledge of the research subject. Hence, most researchers
report generalization based upon the statistical analysis,
but also call upon their knowledge of the subject to project
their findings to a population broader than just the study
sample. The sampling technique employed in this study
allows study results to be generalized to the Michigan
population of early adolescent youths and their families.

Michigan counties were stratified by the size of their
early adolescent population. Counties were randomly chosen;
two school districts, within each county, were chosen using
a table of random numbers; the same procedure was applied in
selecting schools within each school district. At the final
stage of sample selection, cluster sampling was employed in
each school. Each cluster contained 12 students which were
also chosen using a random numbers table. The sampling
procedure was designed to interview equal numbers of male
and female young adolescents equally divided between grades
five, six, seven and eight.
County Selection

Michigan counties were stratified to form homogenous
subgroups. Youth population size was the single criterion
chosen as the stratifier since a comprehensive measure of
family socioeconomic status was impossible to obtain. The
researchers did consider an additional stratifier of
household income of the counties. The counties within each
stratum were almost identical, differing only in the rank

ordering within the stratum. It was therefore decided to

47

use only population. The three substrata were: (1) highly
urban, (2) counties with large cities and rural areas, and
(3) highly rural counties. Eighteen counties were selected
to represent the identified strata.

The eighteen counties initially chosen represented
approximately one-fourth of the total number of Michigan's
counties. This number of counties was chosen for two
reasons: a sample large enough to be representative of the
state's population of early adolescents, but yet small
enough for data to be managable; and because it was
anticipated that there would be county 4-H staff to assist
in the study at the local level. Once the county
stratification process was completed, each county's
population of early adolescents, ages 10 to 14 years old,
was assigned random numbers according to its population. In
order to correctly represent the proportion of early
adolescents in each stratum, the cluster system was used.
Stratum 1 needed eight clusters; stratum 2 needed nine
clusters; and stratum 3 needed eight clusters. The list of
counties with their respective numbers of clusters is shown
in Table 1.

Problems became apparent as the initial county and
cluster selection was examined. The most urban counties,
Wayne and Oakland would be unable to complete the designated
number of interviews due to insufficient numbers of 4-H
staff to supervise the large number of volunteer

interviewers needed. Closely related to the issue of staff

48

Table 1

Michigan Early Adolescent Survey: Participating Counties (1983)

 

*
Initial Counties and Number of Clusters for Sample

 

Wayne (5) Eaton (1)
Oakland (3) Lenawee (l)
Macomb (l) Allegan (1)
Kent (1) Van Buren (l)
Saginaw (2) Tuscola (l)
Washtenaw (l) Chippewa (l)
Kalamazoo (l) Emmett (1)
St. Clair (l) Benzie (l)
Calhoun (1) Delta (1)

 

*
Final Counties and Number of Clusters for Sample

 

Wayne (2) Eaton (1)
Oakland (2) Lenawee (l)
Macomb (2) Allegan (1)
Kent (1) Van Buren (l)
Saginaw (2) Tuscola (l)
Ingham (l) Marquette (l)
Kalamazoo (l) Presque Isle (l)
Genessee (2) Jackson (1)
St. Clair (l) Benzie (l)
Calhoun (1) Delta (1)

 

1 cluster = 12 children
Total sample = 304

49

shortages, was the concern that an adequate number of
volunteers could not be recruited to accomplish the large
number of interviews. The researchers decided that
substitutions were in order to insure an adequate number of
subjects to be representative of the substrata. Three of
Wayne county's clusters were reassigned to Genessee and
Jackson counties. Wayne county's sample was to have been
drawn from the Detroit Public Schools, primarily a black,
inner—city group. In order to insure the inclusion of a
similar group of youths, Flint and Jackson public schools
were chosen because their respective student bodies, also
represented an inner city population with similar
demographic characteristics and therefore, would be very
similar to the originally identified sample. One cluster
from Oakland county was assigned to Macomb county, again
geographically and demographically most like the orginal
county.

A second problem occurred when some counties chose not
to participate in the study necessitating further
substitutions. To insure sampling representative of the
substrata, county substitutions were made as follows:
Ingham for Washtenaw, Presque Isle for Emmett, and Marquette
for Chippewa. The least satisfactory substitution was in
the upper pennisula as Marquette and Chippewa counties are
dissimilar demographically. Despite the bias that this
substitution brought into the sample, it was decided to

maintain the commitment to include an upper pennisula

50

county. The final county list with the associated number of
clusters is illustrated in Table 1.
School District Selection

Two school districts per county were selected using the
same selection procedure that had been used for county
selection. Random numbers were assigned all school
districts, public and private, based upon their population.
School districts were unable to provide information
regarding the exact number of 10 to 14 year olds in their
districts, therefore selection was based upon the total
number of students enrolled in the district. There is a
possibility of bias in the selection process at this point
if there were disproportionate numbers, larger or smaller,
of early adolescents compared to the total school
population.

School districts in fourteen of twenty counties
cooperated to provide student names. It was necessary to
make substitutions in the six remaining counties as the
school district inititally identified refused to participate
in the study. In four counties, permission was secured from
the next district chosen by random selection. Oakland
county needed to contact four school districts before
receiving permission to sample in two districts. Jackson
Public Schools refused to participate so the Catholic
schools in the city of Jackson were substituted and sampling
took place from their inner city schools. This brought the

largest amount of bias into the sample, both in terms of

51

possible racial and religious difference.
Student Selection

Student selection occurred in two ways. Some school
districts provided lists of fifth, sixth, seventh, and
eighth graders. In these cases, student lists for each
grade were numbered and four names were selected for each
intended interview position using a table of random numbers.
This was the case most often in smaller school districts.

In large districts, schools were assigned random numbers
based upon their population of 10 to 14 year olds, and then
two schools were selected for each school district.
Students were assigned random numbers based upon their
population of 10 to 14 year olds, and then two schools were
selected for each district. Students were assigned random
numbers and selection took place using a table of random
numbers. Four potential students were selected for each
position necessary to conduct the study.

Students for each position were randomly numbered so
that no bias would enter into the order in which families
were selected. For example, if male eighth graders were
needed, four names were randomly selected and then randomly
numbered as to order in which the interviewer would contact
them. Slightly over two times the number of families needed
had to be contacted in order to fill the designated
interview positions. The most difficult subjects to recruit

into the study were the fourteen year old males.

52

Weighting the Sample

At the conclusion of the data collection period data
had been collected from 285 youth, 19 fewer than the number
designated for the study. Some counties were unable to
interview sufficient respondents to fulfill their assigned
number. To insure that strata were proportionately
represented, weighting was used to bring each stratum up to
the desired number and thus more nearly representative of
the stratum. Stratum 1, the urban group, had the most
difficulty with data collection and therefore
underrepresented the youth living in urban areas. The total
number of actual respondents for each stratum was identified
and then divided by the target number for the stratum
resulting in the number used for weighting for the
particular stratum. Weights for the strata were: Stratum
1, (86.45% response) 1.1566265; Stratum 2, (95.5% response)
1.046729; and Stratum 3, (98.95% response) 1.0105263. The
weights were of a proportion that did not grossly violate
the original sampling design nor did they increase the
numbers by such a large proportion to make statistical

inference invalid (Backstrum & Hursh—Cesar, 1981).

Michigan Early Adolescent Study Families

The subjects for this study were 304 Michigan early
adolescents and their parents. The parental group included
283 mothers and 212 fathers. The following sample

description is from the Michigan Early Adolescent Survey:

53

Final Report (Keith, Hoopfer, Nelson, Covert & Bond, 1985).
Characteristics of the MEAS families are shown in Table 2.

Early adolescents. The youth group was almost

 

equally divided between males and females. The sample
included 150 males (49.5%) and 154 females (50.5%). The
youth, students in grades five, six, seven, and eight, were
almost evenly divided among the four grades. The ages of
youth ranged between 10 and 14 years, with three-quarters of
them aged 11, 12, and 13, while the other one—quarter was
comprised of 10 and 14 year olds.

Parents. The majority of MEAS parents were between
31 and 45 years of age (n=160, 77%). Five percent (n=20) of
the parents were under thirty years of age and approximately
fifteen percent (n=36) were over 46 years of age.

MEAS parents were more educated than their counterparts
in Michigan. Almost twice as many parents in the sample
were college graduates, with many of them having completed
graduate or professional school. Likewise, half again as
many parents in in the MEAS sample as compared to the
Michigan census data had some college education.

The majority of parents in the sample were Caucasian
(n=243, 83%). Blacks made up approximately 16 percent
(n=48) of the sample while just over one percent (n=6)
identified themselves as Mexican—American. This is similar
to the distribution within Michigan.

Most adults, both men (n=192, 91%) and women (n=177,

63%), were employed outside the home. Most fathers were

54

Table 2

Characteristics of Participants in the Michigan Early Adolescent Survey

 

as Reported by Fathers, Mothers and Adolescents (1983)

 

 

*
Characteristic n Frequency Percentage@

 

Age in Years

Fathers 210
25-30 7 4
31-35 33 16
36-40 73 35
41-45 54 26
46-50 25 12
51-60 18 8
Mothers 282
21-30 20 7
31-35 95 34
36-40 94 33
41-45 43 15
46-50 23 8
51-60 6 2
Adolescents 304 Boys Girls
10 20 17 12
ll 34 35 23
12 37 44 27
13 38 39 25
14 22 19 13
Education
Fathers
High school or less 83 40
College 127 60
Mothers
High school or less 142 51
College 139 49
Adolescents
5 78 26
6 68 23
7 77 25
8 79 26

Table continued

 

55

Table 2 (con't)

 

 

Characteristic n Frequency* Percentage@
Income
Less than $20,000 92 32
$20,001 - $30,000 86 31
More than $30,001 105 37
Number of Children
1 33 ll
2 112 37
3 90 30
4 44 15
5 12 4
6 8 2
7 or more 4 1
Employment Status
Fathers employed 192 91
Mothers employed 177 63
Occupation
Fathers
Professional 35 17
Management 33 16
Unskilled 95 46
Clerical 4 2
Farmer 13 6
Service worker 10 5
Mothers
Professional 33 12
Management 13 5
Unskilled l7 6
Clerical 63 22
Farmer 5 2
Service Worker 13 5
Homemaker 83 30

 

* missing data causes some totals to be less than actual number subjects
@ totals may not add to 100 due to rounding

56

employed by someone other than themselves (n=150, 72%).
One-fifth of the fathers were professional people, with
approximately another one-fifth of the fathers in management
positions. Almost 20 percent (n=42) were self-employed.
Over half of the fathers reported themselves as skilled
workers. Ten percent of the mothers were self-employed and
fifty percent reported they were employed by someone other
than themselves. Many women were engaged in office work
(n=63, 33%). Thirteen percent of the mothers were
professional people. Twenty seven percent of MEAS mothers
were fulltime homemakers.

Families. The majority of the youth lived in two
parent homes. Sixteen percent of the youth (n=49) who lived
in single parent homes resided with their mothers while less
than two percent (n=4) lived with their fathers. These
proportions are very similar to the Michigan census data.

Ninety-five percent of the youth lived with their
natural mothers; 76 percent lived with their natural
fathers. Adoptive mothers and fathers accounted for only
about two percent of the sample; step-mothers, another one
percent; and step-fathers account for almost five percent of
the sample. The number of children in the families was as
follows: one, 11 percent (n=33); two, 37 percent (n=37);
three, 30 percent (n=90); four, 15 percent (n=44); five, 4
percent (n=12); six, 3 percent (n=8); and seven or more,
less than 2 percent (n=5).

The income of the MEAS sample was very much like the

57

Michigan census information on families with early
adolescents. Almost one-third of the households earned
between $20,001 and $30,000 (n=61); with another one-third
(n=80) in the $30,001 to $55,000 income bracket. About
one-fifth (n=37) of the families had incomes between $10,000
and $20,000. Fourteen percent (n=37) of the families were
in the lowest income category of less than $10,000. Five
percent (n=8) of families had an income that exceeded
$55,000.

A large number of MEAS families, approximately 40
percent, lived in rural areas, another 30 percent reported
living in town of 25,000 people or less. Twenty percent
lived in large cities and their suburbs.

When examining all the demographic factors most are
consistent with the statistics for the state of Michigan.
The one major exception is that the parents in the sample
are more highly educated than the population of people in

that same age range in Michigan.

Instruments

Several instruments were used in this study. These
instruments were selected to elicit information about the
concepts of interest in an attempt to understand if
differences exist between the two family types; families
with chronically ill and handicapped children and families
with nonaffected children.

Self-Esteem Inventory;(SEI). The Coopersmith

58

Self-Esteem Inventory (SEI) was selected to measure this
concept. The SEI was developed for use with children to
measure the attitudes and beliefs that an individual employs
when presenting him- or herself to the world. "The SEI is
designed to measure evaluative attitudes toward the self in
social, academic, family, and personal areas of experience"
(Coopersmith, 1981, p. l). The original instrument has been
shortened by Coopersmith and adapted for ease of
administration and to allow for use with adults as well as
children (see Appendix A).

Two forms of the modified SEI were used in this study,
the School Short Form and the Adult Form. The School Short
Form includes 25 items that were selected from the original
questionnaire and which have been shown to have a .86
correlation with the School Form (Coopersmith, 1967). The
School Short Form does not allow for the measurement of the
subscale scores, but only a total score. The Adult Form,
like the School Short Form is comprised of 25 items and
allows only for a total score. "The correlation of total
scores on the School Short Form and the Adult Form exceeds
.80 for three samples of high school and college students
(n=647)" (Coopersmith, 1981, p. 2).

The SEI is designed to be self-administered with the
respondent instructed to read each item and respond "Like
Me" or "Not Like Me." Items responses that match those in
the SEI scoring guide are totaled and the raw score is

multiplied by four to arrive at the self-esteem score. This

59

results in the maximum possible score of 100.

Coopersmith did not establish levels of scores to
denote levels of self—esteem, but rather leaves
interpretation up to the individual situation to allow for
the variations which are normally found in different groups.
Interpretation will then depend upon the distribution of
scores for each sample. Scores are usually skewed toward
high self-esteem with the means generally between 70 and 80
(Coopersmith, 1981).

The SEI has been used extensively since it's
development. Coopersmith (1981) cited a number of studies
which have been reported to attest to the reliability and
the validity of this instrument. While most studies report
on the long Schol Form of the SEI, Bedeian, Geagud, and Zmud
(1977) reported Kuder-Richardson reliability estimates of
.71 for females and .74 for males on the Short Form.
Reliability scores for the SEI in this study were .75 for
the School Short Form and .79 for the Adult Form. Validity
is supported by Coopersmith (1967), among others, who
determined that SEI scores were significantly related to
creativity, academic achievement, resistance to group
pressures and perceptual constancy.

Family Events Index. The Holmes and Rahe (1967)
Social Readjustment Scale (SRRS) provided the model and the
foundation for a tool designed to measure the concept of
stressful family events. Information about the occurrence

of untoward events was sought but no attempt was made to

 

60

attach a quantitative element that would in effect rank
order the events or provide a stress score. The SRRS has
been used in research studies with a number of different age
groups and target populations (Minour & Holmes, 1968;
Yeaworth, York, Hussey, Ingle & Goodwin, 1980). Differences
have been demonstrated with individual groups of subjects on
the ordering of the events, but there has been almost
universal agreement about the significance of the identified
life events (Holmes & Rahe, 1967).

McCubbin and Patterson (1982) developed a model to
understand family adaptation to stress, the Double ABCX
Model. The term "pile-up" is used with this model to
explain the occurrence of stressful life events and the
subsequent effect upon the family. The Double ABCX Model of
family stress suggests that families seldom deal with a
single stressor and that their ability to cope with adverse
situations depends in part on the number of stressors which
occur in conjunction with the normal and expected life
changes found in a dynamic family system.

Families participating in the MEAS study are intended
to be representative of families in the developmental stage
of early adolescence. The tasks of each developmental stage
impact upon the family as individual family members cope
with their own particular stage of development along with
the particular stage of family development and its implied
tasks. While transitions from one developmental stage to

another are expected and also accepted as an ongoing part of

 

61

a family's life together, the adjustments called for by the
family still may lead to anxiety and feelings of uncertainty
(Olsen et al., 1983). The accomplishment of these normally
expected tasks is potentially stressful, but when the
presence of a child with a chronic illness or handicapping
condition is added to the family unit, a milieu for pile-up
is established.

A Family Events Index was compiled to measure the
number of untoward events that occurred with a family. MEAS
subjects were asked to indicate if any of a number of
stressful events had transpired within the past year.
Positive responses to the items in the index were summed
with no attempt to categorize or rank order the scores.
Using the concept of pile-up, it was proposed that the
larger the number of untoward events, the higher the stress
level and the fewer the resources available to the family to
cope with their situation. The Family Events Index consists
of 10 items adapted from the SRRS and selected because of
their potential to impact the entire family rather than an
individual family member. The index includes items such as
the birth of a sibling or the death of a family member or
friend (see Appendix B).

Family Role Scale. Family roles consist of
expectations and behaviors that individuals employ in the
interactive process with other family members. The
interactive nature of roles implies that each family role

has a reciprocal set of expectations for example,

62

mother/child. This concept was measured using a Family Role
Scale adapted from the Scale of Attitudes Toward a Dual Role
for Women (Dalrymple, Lowe & Nelson, 1971). The Attitudes
Scale was devised to assess the effects of mothers' working
outside the home upon children. Items used in the Michigan
Early Adolescent Survey were adapted from the Attitudes
scale to measure characteristics of family roles and the
implied complementary roles (see Appendix C).

The Family Role Scale, a multi-item scale was used to
try to understand the complexity of the concept of family
role expectations that single response items cannot measure.
The multi-item scale also avoids the biases inherent in
single item measures (Babbie, 1983). On the Family Role
Scale, respondents were instructed to give their opinions
about the family role statements that comprise the scale.
Statements include items that attempt to assess attitudes
about maternal employment, fathers' financial support
responsibilities and the roles of girls and boys in regard
to in home and out of home work. A Likert-type scale was
used with four answer choices available to the respondent:
strongly disagree to strongly agree. An even number of
responses forces people into choosing and is probably an
accurate indication of their true attitude (Backstrum &
Hursh-Cesar, 1981). Scoring for each item was arranged from
low (1), nontraditional to high (4), highly traditional in
their attitudes towards the roles of family members.

The Dalrymple Scale, published in 1971, reported

63

test-retest reliability at .85 on four samples of adolescent
girls. Project reliability scores ranged from .80 to .83.
Content validity was established by a panel of experts
consisting of family specialists and teachers. The target
audience for the original instrument was adolescents,
therefore input from that age group was elicited and
incorporated into the content. The Family Role Scale
consists of five items to measure attitudes about roles and
was administered to both youth and their parents.‘ In the
present study reliability scores for this scale were
determined using the SPSS subprogram (Hull & Nie, 1981).
Cronback alpha's ranged from .55 for youth, .57 for mothers,
to .60 for fathers. Validity measures reported by Dalrymple
(1971) were used. Face validity was confirmed by the MEAS
research team.

Family Relationships. The dimension of family
relationships was measured using two scales developed from
items concerning relationships with another family member.
Relationship items were placed on both the parental and the
youth questionnaires. Adolescents were asked about their
relationship with their father, mother and siblings. These
three items were combined to form the Family Relationship
Scale (see Appendix D). The parental questionnaire contained
only one item regarding family relationships, that being how
each felt about the child who was participating in the
study. Two additional items relating to the adolescent

study participant were also included to form a three item

 

64

scale, the Adolescent Relationship Scale (see Appendix D).
Respondents, both adolescents and parents, were asked to
select among four choices ranging from a response that was
very negative to a response that was very positive to
characterize their relationships with other family members.
The higher the respondent's score for the scale, the more
positive their relationship with the other family member(s).

The development of feelings proceeds in the direction
from specific feelings about an individual to more
generalized feelings about groups of individuals. Feelings
about individual family members, if one would use these
directional notions, are then an indicator of one's feelings
of family relationships as a whole. "Feelings about family
are so organized that one can overlook occasional bursts of
anger and cope with bouts of illness and handle limited
interpersonal stresses without altering one's basic
commitment to and evaluation of one's family" (Andrews &
Whithey, 1976, p. 15).

A limitation of using this type of a self-report item
is the chance for the respondent to be less than totally
honest. Campbell, Converse and Rodgers (1976) also
suggested that subjects tend to feel reluctant to describe
their feelings for other family members as less than
average. Backstrom & Hursh-Cesar (1981) labeled this
phenomenon "diluted truth." A dynamic method of measuring
relationships is most valid as it has built into the

methodology a way to uncover subtle changes which occur over

 

65

time, something that is lacking in this particular MEAS
one-time interview survey.

Two family relationships scales were developed and
used, one for parents (fathers and mothers) and one for
adolescents to relate their feelings about other family
members. Each of the three item scale instructed respondents
to select from choices ranging from very poor feelings about
another family member to a very good feelings about the
individual. Scores on both of the family relationship scales
could range from one to a high of four. Reliability scores
for the three item Adolescent Relationship Scales were .42
for mothers and .46 for the fathers adolescents. The
reliability score for the three item Family Relationship
Scale was .62 for the adolescents. The validity measure for
this particular scale was face validity confirmed by the
MEAS research teram. Andrews and Whithey (1976) suggested
that "Measures without validity are worthless, but measures
with high validities are not necessarily useful. One must
also be concerned about... the practical relevance of a
measure and...the degree to which it permits discrimination
among the objects being measured" (p. 176). These social
indicators have a subjective quality about them that the
researcher must not lose sight of when trying to answer the

research question.

Families With Chronically Ill or Handicapped Children

Families with chronically ill or handicapped children

66

were identified by responses to a set of questions on the
MEAS Household Questionnaire. The questions were designed
to serve to screen families and thereby permit the
separation of families into two categories: nonhandicapped
and handicapped. A variety of chronic illnesses and
handicapping conditions were listed without regard for the
potential severity of the conditions, but rather to elicit a
positive response if a child in the family was affected by
any of the conditions identified. Hyperactivity and
learning disorders were also included in the list because of
misunderstandings surrounding these conditions and the
problems associated with diagnosis. The list was generated
from a review of the literature and the author's clinical
experience in working with Pediatric clients and their

families (see Appendix B).

Data Analysis

The data for this study were from the Michigan Early
Adolescent Survey (MEAS). Variables were identified that
would best measure the concepts of interest for this study.
The family had been identified as the primary unit of study
so it was necessary to select matching items from all three
respondent questionnaires. Four composite variables were
identified after a thorough investigation of mother, father
and adolescent instruments and responses.

The decision-making process included identification of

all possible variables, examination of frequency of response

67

scores, use of measures of association to determine the
extent of relationships between variables, and where
appropriate, tests of reliability. The composite scores for
the dependent measures are: (1) self-esteem scores, (2)
family relationship scores, (3) family role expectations
scores, and (4) family events scores.
[Ehalysis of variance is used to check the amount of
variation in the mean scores between groups against the
variation of mean scores among members within the group
(Iverson & Norpoth, 1976). This type of analysis is
necessary to obtain a clearer understanding of how the
variance which may exist within the family constellation is
related to the variance between groups, that is, between
families with nonaffected children and families with
chroncially ill or handicapped children. <%:Erobability of
.05 0 less was considered to be sufficient evidence to
reject the hypotheses that no difference exists between the
families with nonaffected children and families with
chronically ill and handicapped children.

ti Repeated measures analysis of variance was used to
examine differences between family members in two family
types on the dependent measures. Repeated measures tests
allow for analysis of information obtained when the.
researcher has chosen to gather data from more than one
family member, providing for a within family factor (Ball et
al., 1983). In this study, the family unit was the focus.

To better understand if differences did exist between the two

68

family types, scores of the three family members were used.
This study had two between family factors corresponding to
the two family types and three within family factors
representing the three family members. "The within-subjects
factor is synonymous with the repeated measures factor..."
(Huck, Cormier & Bounds, 1974, p. 106).

Schumm and associates (in press) contend that even in
the study where only a slight correlation is demonstrated
between family member scores, that it is inappropriate to
use statistical methods that assume independence. The
dependence of the responses by individual family members
must be assumed by the nature of their relationship and by
the fact of their continued interaction time. Pearson
product moment correlation was used on the dependent
measures to describe the relationship between the variables
for the individual family members.

If analysis of variance were to be used without
repeated measures, family member differences could be masked
as one examines composite results. The critical element
within the repeated measures design which makes it useful
for family research, that is using responses from more than
one family member, is the capability of the design to sort
out and remove the variability attributable to individual
differences (Myers, 1979; Winer, 1971). A repeated measures
design adds to analysis in family research by adding greater
power through the testing of family member main effect,

thereby strengthening the results of the statistical test

(Ball et al. ,

1983) .

69

Chapter IV

THE RESULTS

The family unit was the focus of this research study.
Families with chronically ill and handicapped children were
compared with families with nonaffected children by
examining data from fathers, mothers and early adolescents.
A primary hypothesis was formulated for each of the concepts
being investigated. If the hypothesis was rejected,
alternate hypotheses were investigated to more clearly
understand the differences between the two family types.
The results of the data analysis are presented as follows:
(1) characteristics of the study families; (2) differences
in self-esteem; (3) differences in stressful life events;
(4) differences in family role expectations; and (5)

differences in family relationships.

Characteristics of the Study Families

Data for this study were obtained from the Michigan
Early Adolescent Survey (MEAS). MEAS respondents included
304 adolescents, 283 mothers and 212 fathers. The focus of
this study was the family unit rather than the individual

family members, necessitating that data from all three

70

71

family members be used. The particular focus of this study
meant that the original sample had to be narrowed so that
each family would supply data from the father, the mother
and the adolescent. Approximately 65 percent of the
original families met these criteria, (n=197) and formed the
respondent family pool for the current study.

Families for this study were divided into two groups:
families with chronically ill and handicapped children
(referred to as handicapped families) and families with
nonaffected children (referred to as nonhandicapped
families). There were 56 handicapped families and 141
nonhandicapped families in the respondent family pool (see
Table 3).

Family size as measured by the number of children 18
years old and younger, ranged from one to eight children.
The family size of the nonhandicapped group was, on the
average, smaller with 55 percent indicating one or two
children, while only 41 percent of the handicapped families
reported having one or two children. Adolescents in this
study all resided in two parent homes.

Early adolescent subjects for this study formed groups
very similar to the MEAS youth (Keith et al., 1985). This
sample included 197 early adolescents, 97 males and 100
females. Youth were almost equally divided between grades
five, six, seven and eight. Three-fourths of the youth were
almost evenly distributed over the ages 11, 12 and 13 with

the remaining one-fourth almost equally divided over the

Table 3

Demographic Characteristics of Nonhandicapped and Handicapped Families

72

 

 

 

 

 

Nonhandicapped Handicapped
n=l41 n=56
. * . @ * @
Characterist1c Frequency (A) Frequency (Z)
Family Size
1 l8 (l3) 8 (14)
2 58 (42) 15 (26)
3 38 (27) 22 (39)
4 16 (12) 6 (11)
5 or more 9 ( 7) 5 (10)
Adolescents
Males 62 (44) 35 (62)
Females 79 (56) 21 (38)
Age in years
10 17 (12) 7 (12)
11 30 (21) 13 (23)
12 40 (29) 13 (23)
13 37 (26) 14 (26)
14 17 (12) 9 (17)
Grade
5 32 (23) 16 (29)
6 36 (26) 13 (23)
7 34 (24) 13 (23)
8 37 (27) 14 (25)
Age in Years
Fathers
Less than 30 4 ( 3) 3 ( 5)
31-40 68 (48) 30 (55)
41-50 56 (40) 18 (33)
41-60 13 ( 9) 4 ( 7)
Mothers
Less than 30 9 ( 6) 5 (10)
31-40 87 (62) 37 (71)
41-50 43 (31) 8 (15)
51-60 1 ( 1) 3 ( 6)

Table Continued

73

Table 3 (con't)

 

Nonhandicapped Handicapped

 

 

* *
Characteristic Frequency- (%)@ Frequency (%)@

 

Education
Fathers
High school or less 35 (36) 21 (59)
College 63 (65) 15 (41)
Mothers
High school or less 65 (51) 32 (60)
College 64 (49) 21 (40)
Employment
Fathers
Employed 129 (92) 50 (89)
Unemployed 3 ( 2) 3 ( 6)
Missing 9 ( 6) 3 ( 5)
Mothers
Employed, fulltime 47 (33) 13 (23)
Employed, parttime 4O (28) 25 (45)
Homemaker, fulltime 46 (34) 14 (25)
Missing 8 ( 6) 4 ( 7)
Occupations
Fathers
Unskilled 7O (53) 31 (59)
Skilled/Professional 62 (47) 21 (40)
Mothers
Unskilled 6 ( 7) 6 (15)
Skilled/Professional 82 (93) 33 (85)
Family Income
$20,000 or less 42 (32) 21 (42)
$20,001 - $30,000 40 (31) 22 (42)
$30,001 or more 49 (37) 8 (l6)

 

* missing data causes some totals to be less than actual number subjects
@ totals may not add to 100 due to rounding

74

ages 10 and 14. The percentage of boys was somewhat higher
in families with handicapped children.

The majority of adults in this study, both mothers and
fathers, were forty years of age or less. Fifty-four
percent of the fathers and 71 percent of the mothers were in
this age range. Mothers and fathers in the handicapped
group were younger than the nonhandicapped group, while at
the upper age limits, fifty years of age and older, the two
family groups were almost equally divided.

Formal education of the adults was examined. Mothers
had less formal education than fathers, with 47 percent of
the mothers as compared to 58 percent of the fathers having
completed at least some college. The parents from the
handicapped group had less formal education with the
majority of both mothers and fathers (approximately 60
percent) having no more than a high school education.

The income level for families in this study was almost
equally divided between three categories: 35 percent with
less than $20,000; 34 percent with $20,001 to $30,000
incomes; and 31 percent in the $30,001 and above income
levels. The majority of the handicapped families were
clustered in the $30,000 or less category (84 percent)
compared with an almost equal distribution of the
nonhandicapped families across the three income categories.

The majority of the parents in this study worked
outside the home: fathers, 91 percent and mothers, 64

percent. Maternal employment outside the home was similar

75

for both family types.
Differences in Self-Esteem

Self-esteem was measured by scores obtained on the
Coopersmith (1981) Self-Esteem Inventory; Adult Form for
parents and the School Short Form for adolescents. Low
positive correlations were found between family member's
scores on the self-esteem scale: r=.21, =<.Ol, for fathers'
and mothers' scores; r=.21, p=<.002, for mothers' and
adolescents' scores; and r=.12, p=<.O9, for fathers' and
adolescents' scores. The positive correlations between
family member's scores supported the use of a repeated
measures design to more clearly demonstrate the family
factor that is present due to the interaction patteag of
family members. It should be noted that 122 families had
complete information for the self-esteem inventory and
therefore, formed the subject group used to examine this
variable.

Hol There is no difference in self-esteem between
individual family members and families as a whole
with chronically ill and handicapped children and
individual family members and families as a whole
with nonaffected children.

Repeated measures analysis of variance was used to

examine this hypothesis. Self-esteem scores from fathers,
mothers and adolescents were examined to determine if the

presence of a handicapped child would influence the

76

self-esteem in the different family types (see Table 4).

The analysis clearly indicates that self-esteem is
significantly lower (p=.009) in families with handicapped
children. The variance due to between family member's
scores was also very significant. The significant
difference between family members scores is a conffmation of
the results of the repeated measures analysis of variance
used to examine family member's self-esteem scores without
the presence of the independent variable. The variance due
to the between families factor was significant (p=<.01)
supporting the idea that families do differ in their levels
of self-esteem. The difference between family members was
even more significant (p=<.OOO) demonstrating the difference
in individual levels of self-esteem. Mean self-esteem
scores were: fathers', 74.67; mothers', 70.13; and
adolescents', 66.38 (see Table F-l). The member by
handicapped family interaction term was not significant and
probably reflects the gap in self-esteem between handicapped
and nonhandicapped family members. Based upon these results
hypothesis 1 was rejected.

Families with handicapped children had lower
self-esteem than families with nonaffected children.
Rejection of the hypothesis served as the impetus to try to
better understand where the differences in the families
might rest. Alternate hypotheses were proposed and post hoc
procedures were performed to examine intrafamily

differences.

77

Table 4

Repeated Measures Analysis of Variance of Self-Esteem According to
Fathers, Mothers and Adolescents for Nonhandicapped and Handicapped
Families

 

 

Source df SS MS F p
Between families 120
Handicap (A) 1 2783.90 2783.90 7.10 .009
Error 119
Within families 242
Member (B) 2 4068.85 2034.42 7.62 .001
A x B 2 177.76 88.89 .33
Error 236

Total 362

 

78

Hol.1a There is no difference in self-esteem between
fathers in handicapped and in nonhandicapped
families.

Hol.1b There is no difference in self-esteem between
mothers in handicapped and in nonhandicapped
families.

Hol.1c There is no diference in self-esteem between
adolescents in handicapped and in
nonhandicapped families.

These hypotheses were tested using the t test for
independent samples due to the unequal cell size for the two
family types (see Table 5). Adolescents from families with
handicapped children were significantly different (p=<.01)
with lower mean self-esteem scores. A large standard
deviation indicated a wide range in scores for the
adolescents in the handicapped group. Based upon the result
of the t tests, hypotheses 1.1a and 1.1b were not rejected.
Hypothesis 1.1c was rejected due to the statistically
significant t test for differences in self-esteem with
adolescents.

Hol.2a There is no difference in self-esteem between
mother-father dyads in handicapped and in
nonhandicapped families.

Repeated measures analysis of variance was used to

test this hypothesis. Mean self-esteem scores for fathers
were higher than for mothers, although scores for both

family members were lower for the handicapped group

79

Table 5
t Tests for Self-Esteem Scores of Fathers, Mothers and Adolescents in

Nonhandicapped and Handicapped Families

 

 

 

 

Nonhandicapped Handicapped
n=86 n-35
Mbmber Groups M SD M SD t
Fathers 76.13 15.72 71.15 17.60 1.54
Mothers 71.48 20.65 66.89 20.05 1.13
*
Adolescents 68.83 14.03 60.48 20.39 2.61

 

*
p‘f_.01

8O

(fathers' 76.13 versus 71.15; mothers' 71.48 versus 66.89).
This difference was not statistically significant (see Table
6). Self-esteem scores were not significantly lower in
families with a handicapped child. Hypothesis 1.2a was not
rejected.

Hol.2b There is no difference in self-esteem between
mother-adolescent dyads in handicapped and in
nonhandicapped families.

The self-esteem scores of mothers and adolescents were
examined using repeated measures analysis of variance to
determine if differences were present between handicapped
and nonhandicapped families (see Table 7). In this
analysis, the presence of a handicapped child was found to
be significant (p=.02) indicating that there is a difference
in mean self-esteem scores for mother-adolescent dyads in
the two types of families. The actual member differences in
self-esteem were nonsignificant indicating that mean scores
for mothers and adolescents were close within each family
type (mothers', 71.48 versus 66.89; adolescents', 68.83
versus 60.48). Hypothesis 1.2b was rejected.

Hol.2c There is no difference in self-esteem between
father-adolsecent dyads in handicapped and in
nonhandicapped families.

Mean self-esteem scores for fathers were considerably

higher than mean scores for adolescents in both handicapped
and nonhandicapped families (see Table 8). Fathers' mean

scores were more than ten points higher for each family type

81

Table 6 , ‘&u""

Repeated Measures Analysis of Variance of Self-Esteem Accordipg to
Fathers and Mothers for Nonhandicapped and Handicapped Families

 

Source df SS MS F p

 

Between families 120

 

Handicap (A) 1 1163.39 1163.39 2.88 .09
Error 119

Within Families 121
Member (B) 1 1008.37 1008.37 3.63 .059
A x B l 2.03 2.03 .007 .93
Error 119

Total 241
Table 7

Repeated Measures Analysis of Variance of Self-Esteem According to

 

Mothers and Adolescents for Nonhandicapped and Handicapped Families

 

Source df SS MS F p

 

Between families 120

Handicap (A) 1 2123.35 2123.35 5.72 .02
Error 119

Within families 121
Member (B) 1 1040.88 1040.88 3.40 .067
A x B 1 179.46 179.46 .59 .45
Error 119

Total 241

 

82

Table 8

Repeated Measures Analysis of Variance of Self-Esteem According to

 

Fathers and Adolescents for Nonhandicapped and Handicapped Families

 

Source df SS MS F p

 

Between families 120

Handicap (A) 1 2256.71 2256.71 8.06 .005
Error 119

Within families 121
Member (B) 1 4098.25 4098.25 16.83 .00007
A x B 1 143.31 143.31 .59 .44
Error 119

Total 241

 

83

(fathers', 76.13 versus 71.15; adolescents', 68.83 versus
60.48). The difference in self-esteem scores between
fathers and adolescents was significant although the
interaction effect of member by handicap was not significant
and probably reflects the wide gap between the mean
self-esteem scores for fathers and adolescents. Hypothesis

1.2c was rejected based upon these results.

Differences in Stressful Life Events

The Family Events Index was adapted from the Holmes
and Rahe (1967) Social Readjustment Scale. Respondents were
asked to indicate "yes" or "no" to a series of ten items
suggesting the occurrence of untoward events within the past
year. The total possible score for positive responses was
ten with a range from zero to ten. Indexes with nine or
more completed items were used to measure this concept,
therefore, it was necessary to consider missing data.

Babbie (1983) suggested one method to handle missing data
when using an index is to treat missing data the same as one
of the available responses. The presence of one missing
response was interpreted to mean "no" and treated then as a
complete index and included in the data analysis.

The scores of fathers, mothers and adolescents were
included in these analyses. Complete data were available
for 132 families, when using the technique for the inclusion

of missing data previously described. Weak to moderate

positive correlations were found: r=.42, =.001, mothers'

84

and fathers'; r=.22, p=.04, mothers' and adolescents'; r=.26,
=.017, fathers' and adolescents'. These positive
correlations supported the use of the repeated measures
design, taking into account the family factor shown to exist
in these families.

H02 There is no difference in stressful life events
between families with chronically ill and
handicapped children and families with
nonaffected children.

The number of stressful life events which were
reported was not signficiantly different for the
nonhandicapped and the handicapped families (see Table 9).
The variance due to the difference in reports by family
members was significant suggesting several possible
explanations: (1) that individual family members (seep’
Table F-2) may not remember what has happened to their
family over the past year, (2) using the phrase "over the
past year" was an imprecise measure or that (3) the phrasing
of the items left the items open to broad interpretation.

In reviewing the items, the second or third reasons seem
most likely. The interaction effect was not significant.
Hypothesis 2 was not rejected based upon the nonsignificant

dfferences between the two family types.
Differences in Family Role Expectation

The attitude of family members toward family roles was

measured using the Family Role Expectation Scale. The scale

85

Table 9

Repeated Measures Analysis of Variance Stressful Life Events According
to Fathers, Mothers and Adolescents for Nonhandicapped and Handicapped
Families

 

Source df SS MS F p

 

Between families 131

Handicap (A) 1 .059 .059 .029 .862
Error 130

Within families 264
Member (B) 2 78.28 39.14 25.15 .0000
A x B 2 2.83 1.41 .91 .403
Error 260

Total 395

 

86

contained five item statements to reflect a variety of
family roles. Respondents were asked to indicate level of
agreement with statements of family roles. Responses were
arranged to reflect traditionality in attitudes with a low
score of five for the scale being very nontraditional, to a
high sgflore of twenty which would indicate a very
traditional attitude toward family roles. The nature of the
content for this concept necessitated the inclusion of only
families for whom complete data were avaliable. One hundred
and twenty-one (121) families formed the respondent pool for
these analyses. No systematic relationship was found
between the members on the family role variables: r=.045,
p=.27, fathers and mOthers; r=.09, p=.108, mothers and
adolescents; r=.07, =.18, fathers and adolescents.

H03 There is no difference in family role
expectations between individual family members
and families as a whole with handicapped children
and individual family members and families as a
whole with nonaffected children.

Attitudes about what is expected of family members in
their various roles was measured by reponses to a five-item
scale. Scores could range from low or nontraditional to
high or very traditional. The effects of the handicapped
child on family role expectation proved to be not
significant as illustrated in Table 10. The difference in
attitudes among family members do indeed differ in their

views of intrafamily roles. The differences between

87

Table 10
Repeated Measures Analysis of Variance of Family Role Expectation

 

According to Fathers, MOthers and Adolescents for Nonhandicapped and

 

Handicapped Families

 

 

Source df SS MS F p

 

Between families 121

Handicap (A) l 8.19 8.19 2.11 .148
Error 120

Within families 244
Member (B) 2 113.20 56.60 18.63 .0000
A x B 2 2.47 1.24 .41 .67
Error 240

Total 365

 

88

individual family member's role attitudes in this analysis
were very similar to differences found in the individual
member's role expectation scores when examined without the
effects of the independent variable (see Table F-3). The
variance due to between families was nonsignificant
indicating that families are more alike than different in
their attitudes toward family roles. The differences
between individual family members was very significant
(p=<.OOOO) demonstrating the existence of individual
differences between persons in their attitudes about family
roles. Adolescents were the least traditional in their
attitudes, although all members' mean scores (fathers',
13.08; mothers', 12.21; adolescents', 11.67) were clustered
in the middle between nontratitional and highly traditional
(see Tables F-4 through F-8). The interaction effect of
member by handicap was also not significant, suggesting that
a gap does exist in the member's view of their family roles
in the two types of families. Hypothesis 3 was not rejected
based upon the nonsignificant differences between the two

family types.

Differences in Family Relationships

The intensity of feelings for other family members was
measured using two separate measures, one for adolescents
and one for the parents, in that similar items were not
available on the two questionnaires. Adolescents were asked

to rate their feelings about other family members incluing

89

their father, mother and siblings. Ratings were from a low
of one, indicating a very poor relationship, to a high of
four, or a very close relationship. These three items were
combined to make up the Family Relationship Scale for
adolescents.

The parental questionnaire for the MEAS study
contained only one family relations item, that being the
relationship with the child participating in the study. Two
additional items related to the mother's and father's
relationship to their adolescent and their family were added
to make up the three item Adolescent Relationship Scale for
parents. A moderate correlation between the mother's and
father's scores (r=.54, p=.001) was found. The nature of
the relationship scales necessitated that parents and
adolescents be considered separately.

H04 There is no difference in family relationship
score between adolescents in families with
chronically ill and handicapped children and in
families with nonaffected children.

The independent samples t test was used to examine
mean scores for the adolescents from the two family types.
Adolescents related positive feelings about other family
members as measured by scores on the Family Relationship
Scale (see Table 11). Feelings about other famly members in
the handicapped families were slightly less positive than
feelings of adolescents in the nonhandicapped families,

although not a statistically significant difference.

90

Table 11
t Tests for Family Relationship Scores of Adolescents in Nonhandicapped
and Handicapped Families

 

 

 

 

 

Nonhandicapped Handicapped
n=89 n=35
Member 3 M SD M §_D_ t
Adolescents 3.41 .67 3.21 .60 1.56

 

Table 12
Repeated Measures Analysis of Variance of Adolescent Relationships
According to Fathers and Mothers for Nonhandicapped and Handicapped
Families

 

 

 

Source df SS MS F p
Between families. 128
Handicap (A) l .918 .918 1.65 .20
Error 127
Within families 129
Member (B) l .002 .002 .011 .91
A x B 1 .172 .172 1.03 .31
Error 127

Total 257

 

91

Hypothesis 4 was not rejected based upon the nonsignificant
t test .
H05 There is no difference in family relationships
between fathers and mothers in families
with chronically ill and handicapped children
and in families with nonaffected children.
Repeated measures analysis of variance was used to
test this hypothesis. Mean family relationship scores from
families with complete data were used (n=129). Mothers and
fathers both indicated positive feelings toward their
adolescent children (see Table 12). Feelings towards
ad01escents were slightly less positive in handicapped
families as illustrated in Table F-9. Mean adolescent
relationship scores for fathers were 3.23 in nonhandicapped
families compared with 3.16 for handicapped families.
Mothers scores were 3.31 for nonhandicapped families versus
3.11 for handicapped families. There were no statistically
significant differences in family relationships between the
two family types or between the family members. Hypothesis

5 was not rejected.
Summary

In this study two types of families were examined:
families with chronically ill and handicapped children and
families with nonaffected children. A comprehensive
examination of each of the family types was undertaken by

using responses from three family members to items designed

92

to measure the concepts identified for this study. Concepts
of interest in the families included: self-esteem,
stressful life events, family role expectations and family
relationships. Five major hypotheses were proposed to
examine differences between two family types. Alternate
hypotheses were examined if the major hypothesis was
rejected and significant differences were found between the
two family types (see Table 13). Hyppthesis 1, there is no

difference in self-esteem between the two family types was

' v -1---....._-..-.—. ‘

rejected. Alternate hypotheses were tested which revealed
significant differences in self-esteem between members in
handicapped and nonhandicapped as well as differences
between groups of member dyads, that is, mothers and
adolescents and fathers and adolescents. Hypothesis 2,
there is no difference in stressful life events between the
two family types was not rejected. Hypothesis 3, there is

pg difference in family role expectations between the two

“-_

..-.—

family types was not rejected. Hypothesis 4, there is mo

, ¥_ _ “1

difference in family relationship for adolescents in the two

.“ ‘4‘-..

types of families was not rejected. Hypothesis 5, there is

erence in family relationships for mothers and

at;

no diff

fathers of adolescents in the two family types was not

rejected.

93

Table 13

Summary of Hypotheses

 

 

 

Hypothesis Research Hypothesis Significance Level
1 (self—esteem) rejected f9001
1.1a not rejected NS
1.1b not rejected NS
1.1c rejected £301
1.2a not rejected NS
1.2b rejected £302

1.2c rejected 5,0000
2 (life events) not rejected NS
3 (role expectations) not rejected NS
4 (family relationships) not rejected NS
5 (adolescent relationships) not rejected NS

 

Chapter V

SUMMARY, CONCLUSIONS AND RECOMMENDATIONS

Little is known about how the presence of a chroncially '
ill or handicapped child actually impacts upon the
individual family members and upon the family as a whole.
Recently, evidence has been presented to indicate that up to
40 percent of all families may have one or more children who
fit the criteria for a chronic illness or a handicapping
condition, if the classifications are broadly defined to
include previously unrecognized disorders such as learning
disabilities and emotional problems in addition to such
standard diagnoses as cerebral palsy, asthma and blindness
(Mattsson, 1973). Literature which does exist about these
families tends to emanate from the health care field thereby
focusing upon a specific clinical population. Further,
existing literature tends to report data from one family
member which was then generalized to be family data.
Another limitation of those studies was that the individual
was the primary focus to the exclusion of other family
members. The use of control groups has seldom been reported
in this literature thereby adding methodological weaknesses

to the list of identified shortcomings in the existing

94

95

literature.

Changing social practices and political policies have
resulted in deinstitutionalization of developmentally
delayed individuals and their subsequent appearance in our
communities. Children diagnosed with any number of chronic
illnesses such as diabetes now live long, full-lives when
their disease is controlled by medication and appropriate
health care supervision. These contemporary practices have
alleviated a number of stressors in the lives of these
individuals and their families while imposing still others.
The initial crisis of the diagnosis (Feetham, 1980) may be
replaced by chronic stress, which becomes managable and
families are able to live out their lives under conditions
to which they have adapted (Venters, 1981).

Family ecosystems was used as the conceptual framework
for this research. The family is central to family
ecosystems as it was to this study. The intrafamily
environment consists of the various family members in
interaction with each other. The presence of a chronically
ill or handicapped child has the potential to compromise the
intrafamily environment causing stress and demanding
adaptation from all family members if equilibrium of the
system is to be maintained. The potential inequalities in
distribution of resources, both human and material, can
further potentiate a labile situation demanding adjustment
far beyond the normal exchanges which take place in a

dynamic family system. The impact of the external

96

environment upon the family is acknowledged in this research
indirectly and was only indirectly measured. The primary
focus was the internal family environment.

The major purpose of this research was to examine
families to attempt to discover if the presence of a
chronically ill or handicapped child could result in a
difference in any of four intrafamily factors: (1)
self-esteem, (2) number of stressful life events, (3) family
role expectations and (4) family relationships. Subjects
for this study were drawn from a larger study, the Michigan
Early Adolescent Survey (MEAS). Criteria for entry into
this study necessitated data from three family members. One
hundred ninety-seven of the original 304 MEAS families met
the eligibility requirements. Families were divided into
two groups, those with chronically ill and handicapped
children and those with nonaffected (nonhandicapped)
children by means of a self-report item on the household
questionnaire which made no attempt to assess the
severity of the condition, only to acknowledge the presence
of the affected child. Statistical tests included t tests
for independent samples and repeated measures analysis of
variance.

This study led to several conclusions:

1. The self-esteem levels of fathers, mothers and

adolescents were comparable to findings from other
studies. Fathers, mothers and adolescents had

different levels of self-esteem with fathers having

97

the highest levels and adolescents the lowest
levels.

Self-esteem was significantly lower in families
with chronically ill and handicapped children than
families with nonaffected children.

Adolescents from families with chronically ill and
handicapped children had significantly lower
self-esteem.

Families reported a low number of stressful life
events, an average of less than two out of ten
possible events.

Fathers, mothers and adolescents were
significantly different in their report of
stressful life events, with adolescents reporting
the highest number of events.

Family members were more traditional than
nontraditional in their family role expectations.
Fathers, mothers and adolescents have different
family role expectations with fathers being the
most traditional in their beliefs followed by
mothers and then adolescents.

Families with chronically ill and handicapped
children were not significantly different in their
family role expectations than families with
nonhandicapped children.

Fathers, mothers and adolescents reported positive

feelings toward other family members.

98

Discussion of Findings

Family Ecosystems Theory

 

Family ecosystems theory provided a holistic way to
view the family. Study results indicated that while family
members may differ significantly on the various factors
under consideration, that families when considered as a unit
were more alike than different. The family factor suggested
by the positive correlation of member scores on the
variables was supported by the nonsignificant differences
between family types on all measures studied except
self-esteem.

This research study, one of few studies using multiple
family members as respondents, contributed to the
confirmation that family ecosystems is a viable choice to
provide the framework to study different family types.

While family ecosystems has received some recognition as an
important theory to be used in the study and consideration
of families, only through continued use of this theory will
more total acceptance be gained (Holman & Burr, 1980).
Self-Esteem

Families were examined for differences in self-esteem
to understand what, if any, was the effect of chronically
ill or handicapped child on the self-esteem of the family as
a unit. Differences in mean self-esteem scores were found
to be statistically significant when comparing the two types

of families. Mean scores for the entire sample of

99

individual family members ranged between 66.38 for
adolescents' to 70.13 for mothers' to 74.67 for fathers' (see
Table F-l) and reflect mean levels of self-esteem reported by
Coopersmith (1981).

Mean self-esteem scores for all family members were high
when compared to results reported by Coopersmith (1981). It
should be noted that fathers had the highest levels of
self-esteem, followed closely by mothers. Adults' self-esteem
levels tend to remain stable, having been developed during
their youth (Wylie, 1979). The high levels of self-esteem of
the parents in this study suggest the presence of a supportive
environment for the development of children's self-esteem
which was reflected in the mean self—esteem scores for the
adolescents.

The self-esteem level of adolescents in this study were
lower than that of their parents. Studies by Offer et a1.
(1981) and Simmons et a1. (1973) suggested that the
alteration in the adolescent's school environment, that is,
the transition to junior high school (or middle school) may
lead to a time when self-esteem levels could dip due to the
ambiguities of the new school situation. This may be true
of the adolescent self-esteem scores in this study, which
were somewhat lower than parental mean self-esteem scores. A
comparison of adolescent self-esteem scores between the two
family types yielded significant differences with
self-esteem scores of adolescents in the handicapped

families being lower.

100

Self-esteem is a characteristic of an individual and
not of the total family unit. The consideration of the
family as a system necessitates the examination of the
individuals who comprise the system and what each
contributes to the integrity of the system. The use of the
repeated measures design for analysis provided a method to
account for those differences by looking at the individual
scores, but yet to reflect the broader family picture of
self-esteem. When scores of individual family members were
considered in the two types of families, significant
diffences were found, suggesting that the presence of a
chronically ill or handicapped child may impact upon the
family system in such a way as to cause members to have
lower feelings of self regard. The self-esteem literature
is devoid of studies to either support or refute this
finding, although this finding is not surprising when
considered by using the family ecosystems framework which is
based upon the assumption that what happens to one family
member affects all other family members. It is important
then for individual family members to maintain a sense of
well-being which will aid in their ability to cope with
their family situation (Bristol, 1984).

Stressful Life Events

The presence of a chronically ill or handicapped child
has been well documented to cause stress in a family.
Adaptation to that stress has also been acknowledged

(Bristol, 1984; Longo & Bond, 1984; Venters, 1981). A

101

question asked in this study, concerned the number of
stressful life events: Do families with chronically ill and
handicapped children experience more stressful life events
than families with nonaffected children?

A considerable amount of work has been done to assess
the impact of nonnormative stressful events upon
individuals. Holmes and Rahe (1967) did pioneering work to
quantify the impact of a variety of stressful events by
measuring the amount of life adjustment called for to adapt
to a variety of stressful life events. Subsequent studies
(Minour & Rahe, 1967; Yeaworth et al., 1981) have added to
that body of knowledge. This study did not attempt to
quantify stressful life events, but only to document the
occurrence of those happenings in keeping with the notion of
"pile-up" (Olsen & Patterson, 1981).

This study found that families did not report large
numbers of events. Mean scores ranged from 1.15 for
fathers' to 2.34 for adolescents' for the ten item Family
Events Index (see Table F-2). It should be noted that
adolescents reported the largest number of events which may
have reflected the way in which items or the time frame were
interpreted. Fathers were the most conservative in their
reports leaving mothers' reports in the middle. Mothers'
reports may indeed be the most accurate as often the mother
by virtue of her role in the family may be the most aware of
events that touch the life of the family. Adolescents have

a reference group separate from the family which may

102

account, in part, for their higher report. Since this index
was a retrospective measure, differences in recall could
have influenced the way people responded to the items listed
on the index.

The presence of a chroncially ill or handicapped child
did not result in a significant difference in the numbers of
stressful life events reported. It was thought that the
presence of nonnormative stressors coupled with the presence
of the affected child might place these families in jeopardy
for the "pile-up" phenomenon. This study did not include any
measure of the family's interpretation of the happenings and
therefore some families may be affected by pile-up. The
results of this study suggest that families with chronically
ill and handicapped children are no more at risk than are
other families at this life stage.

Family Roles

 

Attitudes about family roles were measured in this
study with the Family Role Scale. Traditionality, or
attitude toward roles of various family members, was
assessed in an attempt to understand if the presence of a
chronically ill or handicapped child would influence role
attitudes. Flexibility in family roles has been well
documented in the literature as a coping strategy for
families with affected children (Boss, 1980; Farber, 1959;
Gallagher et al., 1982; Gallagher et al., 1983; Koch, 1984).
Studies such as these document a shift in attitudes away

from the traditional family roles to more egalitarian or

103

flexible roles.

Role attitudes were not congruous for participants in
this study (see Tables F-4 through F-8). Fathers were the
most traditional in their beliefs followed by mothers and
then adolescents. All member groups were slightly more
traditional than nontraditional in their role beliefs.
Socialization may have been the underlying cause of these
observed differences with youth exposed to more egalitarian
notions from a number of sources including the media and
their peers. Also, since a large number of mothers in this
study were employed (65 percent), youth may interpret this
trend as being more flexible for mothers' roles. The
parents may view the mother's employment as necessary to
provide sufficient resources to maintain the family, but
nevertheless, still cling to the more traditional role
expectations. A comparison of role attitudes to actual role
behaviors would be one way to provide a clearer picture of
how roles were actually being enacted in the family in
comparison to beliefs.

The notion of role flexibility has been suggested as
necessary to accomodate the normative changes which occur in
the family, but which may also happen in subtle ways that go
unnoticed by family members. The family environment must be
somewhat flexible to accomodate individual family members
and "changes which occur in the accustomed structure,
patterns, and roles of the individual family members call

for a reevaluation of old roles an establishing of new

104

patterns" (Farrell & Hutter, 1983, p. 151).

The presence of the chronically ill or handicapped
child did little to influence members' role expectations.
While each of the member groups from the handicapped
families were slightly less traditional than their
counterparts in their role attitudes, these findings were
not statistically significant.

Families in this study may not have been truly
representative of all families of chronically ill and
handicapped children, or the results of studies suggesting
that role flexibility was a c0ping mechanism for families,
may have been drawn solely from clinical populations with
severely affected children. The lack of agreement in this
study's role expectations with a number of other studies
focusing on families with handicapped children may have been
due to two factors. First, the instrument used in this
study was adapted from a scale (Dalrymple et al., 1971)
which was several years old and may have been too dated for
this study. Second, the original scale was designed to
measure attitudes towards roles of mothers. These two
factors may have been sufficient to distort the ability to
accurately measure the role expectations of the individual
family members, and to uncover differences between the two
family types.

Family Relationshipe
This concept was measured using two scales: one for

adolescents and a second one for mothers and fathers. The

105

adolescent scale was more comprehensive than the parental
scale, as it included responses regarding relationships with
other family members. Mothers and fathers were asked for a
response regarding their relationship with the adolescent
participating in the study only and not other family
members. Positive family relationships were reported by
each of the three member groups. These positive feelings
continued to be present in families with a handicapped
child.

Parental feelings toward other family members do much
to influence the intrafamily environment for family
relationships (Schaneveldt & Ihinger, 1979). This may have
been implied by the report of positive feelings among family
members. Adolescents in this study reported less positive
sibling relationships than parental relationships, which may
reflect the little known ways that siblings relate to each
other rather than the presence of an affected sibling.

The use of single report items has been cited as a
weakness in assessing family relationships (Campbell et al.,
1976) as respondents may answer with a socially acceptable
response rather than provide a true measure of their
feelings. The reports of positive family relationships
found in this study, create what would appear to be a
positive intrafamily environment, but nonetheless, can only
be accepted if one is mindful of how these results were

obtained.

106

Conclusions

This study was unique in several respects. The use of
several family members as participants in a study of the
family has seldom been done due to the difficulty in
recruiting sufficient families into the study with all
identified members participating. The costs of family
research, including both financial and time expenditures, if
one would use a sufficiently large sample, randomly
selected are becoming prohibitive thereby mitigating against
such efforts (Schumm et al., in press). The value of
including responses from more than one family member has
been touted particularly in the area of including children
as subjects as they provide an added, and sometimes
different perspective on the family (Ball et al., 1983;
Klein, 1983; Larson, 1974).

Previous studies of families with chronically ill and
handicapped children have emanated from clinical
p0pu1ations. The very nature of the association of families
with the health care providers may provide a somewhat
distorted view of how families adjust to their affected
child and the resultant life situation. Day to day family
life functioning has received some attention (Hymovich &
Baker, 1985), but more often the focus of these studies has
been on pathology of individual members (Breslau et al.,
1981; Burden, 1980; Cairns et al., 1979; Gayton et al.,
1977), particularly the child afflicted by any of a number

of disabling conditions. The use of the family ecosystems

107

framework as a basis for considering how an affected child
may impact on a number of family variables provides an added
dimension to this literature.

This study included 197 families, more than 25 percent
of which have children with a chronic illness or
handicapping condition. Large-sized studies with a
reference group are all too rare. Both the size of this
study sample and the use of a control group lend strength to
the conclusions one can draw from this study. The results
of this study suggest that families with chronically ill and
handicapped children are at higher risk, particularly for
lowered self-esteem among adolescents than families with

nonaffected children.
Recommendations

The recommendations that come out of this study are
two-fold: first, recommendations for incorporation of these
findings into professional practice with families with
chronically ill and handicapped children, and second,
recommendations for further research. The findings of this
study confirm the need to look beyond the person presenting

with a chronic problem to include the family unit. Itflwas

._,—-

,1“

WWW

clearly demonstrated-in this studywthgtwallfifigmily members
are affected on more than § éigglemdimensigppwpartgeu1arly
,____,__1,_.r,..11‘1_”,fl_,4 . 1.1. -._L , -“rre,

in self-esteem. The use of a family ecological framework
M7 -- n"'7

 

supports a holistic perspective of care. Siblings have too

often been the family group excluded from the attention of

108

the helping professional as siblings are not usually present
at the time of interaction with the affected child and the
parents (often only the mother). Fathers also need to be
encouraged to assume an active family role as avenues for
coping and adaptation are explored.

Clinical practice involving children with chronic
illnesses and/or handicapping conditions must be designed to
involve the entire family and not just the individual.
Assessment must be comprehensive and include
bio-psycho-social aspects of the family to allow for a data
base that will support problem identification and then
intervention. The process of assessment should ideally
include a home visit. This may not be practical for all
families, but the option should be exercised in selected
cases to better understand the family through an expanded
assessment which includes their normal family environment.

Our knowledge of family systems is limited as is our
knowledge about families with chronically ill and
handicapped children, consequently additional research is
needed to expand our knowledge base. This study produced
some interesting findings and should be replicated with

certain modifications. The concept of.familyg{919w

_-,_.1._.._ H--

“_‘_ _ .. "-1

expectations hasmbeen cited as beingflannimportant c0ping
~\——_~‘-—”’______.'_/___.-—........—--—--- -- ~ - ' - 4711..-“. ._——..-.--. “‘-_-fl—f ""h N..‘-“ .... .. .

'---.-—.._-7— I‘“ '4____

’1'
“’1, ”Tm-...a- .M

mechaanm”whichwwasinot”demenstnatgiiifimghis study. A

 

different instrument should be used which would uncover
subtle differences in expectations. If an existing

instrument is not available, a tool must be developed that

109

will be more inclusive to detect differences which may exist
in attitudes toward family roles and ferret out differences
in different family types if those differences do indeed
exist. A clearer conception of family roles might be
explored through the comparison of attitudes with actual
role behaviors.

Family relationships are too complex to be measured
with a single report item or even a small scale such as was
used in this study. The incorporation of multiple
strategcally placed items in the respondent questionnaires
would be valuable to detect if families with an affected
child do truly have more negative family relationships. A
longitudinal study would also be useful in assessing the
patterns of relationships and attitudes over time.

_Replication of this study using expanded measures of

“kw—n.-

 

 

family role expectations and family relationships would be
of interest to understand if these results were from the
instruments or truly a reflection of families with
chronically ill or handicapped children. The use of
families with children in different stages of development
would provide additional information and allow for more
consideration of normative changes as well as nonnormative

changes. A longitudinal study would allow for better

WM—fim~‘

 

understanding of how the normative family life cycle changes
are impacted by the presence of a chronically ill or
handicapped child. Studies to include different family

configurations such as the single parent family should also

110

be conducted to add still another dimension to our
understanding of families with chronically ill and
handicapped children.

Future research endeavors should include families
recruited from clinical populations, particularly where the
intensity of the condition can be more closely measured.
The severity of a child's handicap may be inversely related

to a family's stress level. A child with

51.. .—.— -vv‘H-

‘1ess obvious
defi,c,itsama.ywpo.se.a more-818.91-91.98“-wettessmrtp..a“family. as
these children are often either misdiagnosed or undiagnosed,
leaving families uncertain and wondering if their concerns
are unfounded (Bristol, 1984). Since no attempts to measure
the severity of the condition were included in this study,
questions still remain in regard to both the impact of the
initial diagnosis upon the family followed then by the
impact upon the daily living pattern of families with
children with varying levels of severity of their
conditions.

The process of assessment should lead to intervention
in an attempt to modify or eliminate stressors to the family
and assist them to adapt to their situation. A program of
research related to families will not be complete until
intervention strategies are tested to determine possible
courses of action one might take to assist families to their
optimal state of functioning.

Family research, in many respects, is still in it's

infancy. Experimentation with research methodologies is

111

still in order as are further studies on statistical
analysis of family data. The use of data from more than one
family member has been demonstrated to aid in the
understanding of the "family factor" which has so often been
deleted in family research. Methodologies to further ferret
out family factors will do much to enrich our quest to
understand the complexity and uniqueness of families in a

variety of life stages and situations.

APPENDICES

Appendix A

Coopersmith Inventory

School Form

The following is a list of statements about feelings.
If a statement describes how you usually feel, circle the
number if the column "Like Me." If the statement does not

decribe how you usually feel, circle the number in the

column "Unlike Me." There are no right or wrong answers.
Like Unlike
Me Me
1. Things usually don't bother me. 1 O

2. I find it very hard to talk in
front of the class. 1 0

3. There are lots of things about-

myself I'd change if I could. 1 O
4. I can make up my mind without

too much trouble. 1 0
5. I'm alot of fun to be with. 1 0
6. I get upset easily at home. 1 O
7. It takes me a long time to get

used to anything new. 1 O
8. I'm popular with kids my own age. 1 O
9. My parents usually consider my

feelings. 1 0
10. I give in very easily. 1 0
11. My parents expect too much of me. 1 O

114

Appendix A

School Form (con't)

12.
13.
14.
15.

16.

17.
18.

19.

20.

21.

22.

23.

24.

25.

It's pretty tough to be me.

Things are all mixed up in my life.
Kids usually follow my ideas.

I have a low opinion of myself.

There are many times when I'd
like to leave home.

I often feel upset in school.

I'm not as nice looking as
most people.

If I have something to say,
I usually say it.

My parents understand me.

Most people are better liked
than I am.

I usually feel as if my parents
are pushing me.

I often get discouraged with
what I am doing.

I often wish I were someone else.

I can't be depended on.

115

Like
Me

Unlike
Me

Appendix B

Family Events Index

In every family there are many changes that happen.
Some are good and some are bad, but they all affect the
people in the family. Have any of the following things

happened to you (your child) in the past year? Check the

 

column yes or no for each item.

Yes No
1. A parent died 1 2
2. Close family member died 1 2

3. Serious illness in family or
friend 1 2

4. Parents separate, divorce or
remarry 1 2
5. Parent lost job 1 2
6. Mother went to work 1 2
7. Birth of a brother or sister 1 2

8. Older brother or sister left
home 1 2

9. Trouble with grandparents or
other relatives 1 2

10. Moved to another city or

different part of town 1 2

116

Appendix C

Family Role Scale

Circle the number in the column that most nearly

expressed your opinion.

Stongly Disagree Agree Strongly
Disagree Agree
1. A woman should 1 2 3 4

not work after

she has children
because the father
should support the
family.

2. Working mothers 1 2 3 4
aren't able to
keep a proper and
clean home.

3. Girls need to be 1 2 3 4
taught to work
both at home and
out of the home.

4. Boys need to be 1 2 3 4
taught to work
both at home and
out of the home.

5. It is the woman's 1 2 3 4

responsibility to
keep the home clean.

117

Appendix D

Family Relationship Scale

Circle the number that most nearly expresses your

opinion.

1. In general, what words best describe your relationship
with mother?

Very close, very good
Close, good
Not so close, fair
Not close at all, poor
2. In general, what words best describe your relationship
with your father?
Very close, very good
Close, good
Not so close, fair
Not close at all, poor
3. In general, what words best describe your relationship
with your brothers and sisters?
Very close, very good
Close, good
Not so close, fair

Not close at all, poor

118

Appendix D

Adolescent Relationship Scale

Circle the number that most nearly expresses your
opinion.
1. In general, what words best describe your relationship
with your child?
Very good, very close
Good, close
Fair, not so close
Poor, not close at all
2. Families often have good times and bad times. Think
about your family in the past year or two. Check
the words that best describe how you feel about your
family:
It has been a very good time for our family
It has been both good and bad, but mostly good.
It has been a somewhat difficult time.

It has been a very difficult time.

3. I enjoy being a parent of a 10-to-l4 year old.
Strongly disagree
Disagree
Agree

Strongly agree

119

Appendix E

Disabilities Among Michigan Early Adolescent

Survey Study Families

 

Disability Number
Physical Handicap 4
Developmental Delay 3
Chronic Ill 9
Learning Disorder 11
Diabetes 2
Cystic Fibrosis 0
Asthma 24
Mental Retardation 6
Epilepsy 4
Hyperactivity 13
Cerebral Palsy 1
Deaf 1
Blind 1
Other 14

TOTAL: 71 Families
Chronic Ill: 36 Families

Handicap: 35 Families

120

Table F-l

Repeated Measures Analysis of Variance:

Appendix F

to Fathers, Mothers and Adolescents

Self-Esteem Scores According

 

Source

df

 

 

t Tests for Stressful Family Events

in Nonhandicapped and

Handicapped Families

SS MS F p
Between Families 121 49651.62 410.34 1.41 5301
Within Families 244 70858.32 290.40
Between family members 2 4223.65 2111.83 7.67 .000
Residual 242 66634.67 275.34
Total 365 120509.94 330.16
21 £2
Fathers' 74.67 16.38
Mothers' 70.13 20.50
°Adolescents' 66.38 16.511
Table F-2

of Fathers, Mothers and Adolescents

 

 

 

 

Nonhandicapped Handigapped
n-96 n=36
Member Groups 11 __S_Il M £13 t
Fathers' 1.19 1.18 1.07 1.28 .50
Adolescents' 2.42 1.44 2.22 1.87 .75

 

121

Appendix F

Table F-3

Repeated Measures Analysis of Variance: Family Role Expectations
Accordipg_to Fathers, Mothers and Adolescents in Nonhandicapped and
Handicapped Families

 

 

 

Source df 88 MS F p
Between Families 120 467.77 3.90 1.12 n.s.
Within Families 242 845.24 3.49

Between family members 2 121.77 60.89 20.23

Residual 240 723.47 3.01
Total 362 1313.01 3.63 .0000

a 12

Fathers' 13.08 2.06
Mothers' 12.30 1.64
Adolescents' 11.67 1.73
Table F-4

t Tests for Family Role Expectation of Fathers, Mothers and Adolescents
in Nonhandicapped and Handicapped Families

 

 

 

 

 

Nonhandicapped Handicapped
n=87 n-35
Member Groups M i]; M S2 t
Fathers' 13.11 2.11 13.02 1.97 .20
Mothers' 12.41 1.71 12.02 1.41 1.19
Adolescents' 11.82 1.74 11.30 1.67 1.50

 

122

Appendix F

Table F-S

,Repeated Measures Analysis of Variance of Family Role Expectations
Accordipg to Fathers and Mothers for Nonhandicapped and Handicapped
Families

 

Source df SS MS F p

 

Between families 121

 

Handicap (A) l 2.81 2.81 .76 .38
Error 120

Within families 122
Member (B) l 35.63 35.63 10.81 .001
A x B 1 1.17 1.17 .35 .55
Error 120

Total 243
Table F-6

Repeated Measures Analysis of Variance of Family Role Expectations

According to Mothers and Adolescents for Nonhandicapped and Handicapped
Families

 

Source df SS MS F p

 

Between families 121

Handicap (A) l 10.29 10.29 3.40 .07
Error 120
Within families 122

Member (B) l 21.55 21.55 8.53 .004

A x B l .20 .20 .078 .78
Error 120
Total 243

 

123

Appendix F

Table F-7

Repeated Measures Analysis of Variance of Family Role Expectations

According to Fathers and Adolescents for Nonhandicapped and Handicapped

 

 

 

Families
Source df SS MS F p
Between families 121
Handicap (A) l 4.52 4.52 1.11 .29
Error 120
Within families 122
Member (B) 1 112.61 112.61 35.20 .000
A x B l 2.34 2.34 .73 .39
Error 120
Total 243
Table F-8

t Tests for Adolescents Relationship Scores of Fathers and Mothers in

 

Nonhandicapped and Handicapped Families

 

 

 

 

 

Nonhandicapped Handicapped
n=89 n=35
Member 5 M S2 M 352 t
Fathers' 3.23 .56 3.16 .81 .58
Mothers' 3.31 .59 3.11 .49 1.78

 

124

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