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A Conceptual Model to Examine the Relationship
Between the Health Status of School Age Children
with Cystic Fibrosis and the Hassles Reported

by These Children and Their Families

by

Joanne Kay Adrian

A SCHOLARLY PROJECT

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

College of Nursing

1989

ABSTRACT
A CONCEPTUAL MODEL TO EXAMINE THE RELATIONSHIP
BETWEEN THE HEALTH STATUS OF SCHOOL AGE CHILDREN

WITH CYSTIC FIBROSIS AND THE HASSLES REPORTED
BY THESE CHILDREN AND THEIR FAMILIES

BY
Joanne Kay Adrian

The conceptual framework developed in this scholarly project can be
used to assess the impact of family hassles on the health of school age
children with cystic fibrosis (CF). Treatment of CF is intensive.
lifelong. and expensive. and the median life expectancy is age twenty.
Consequently. families with CF children undergo many stressors. ranging
from major life events to daily hassles. Recent work has shown that
hassles may be more important than major life events in predicting health
status. The proposed framework evolves from both family and systems
theories. Longitudinal data are collected from family members regarding
the occurrences of events of events/non-events. and their assignment as
non-hassles, hassles, or crises. Both cumulative and weighted hassles
scores can be obtained. Unsuccessful efforts to manage these events/non-
events takes energy from the family system. possibly negatively impacting
health. Health is measured using the Swachman score and other indices.
Nurses in advanced practice intervene to decrease occurrences of hassles.

or facilitate individual and family adjustment to them.

ii

TABLE OF CONTENTS

Page
Chapter I: The Problem

Introduction ....................................................... 1
Cystic Fibrosis... ................................................. 5
Historical Perspectives ............................... . ............ 7
Treatment .......................................................... 9
Stressors and Cystic Fibrosis ..................................... 14
Hassles and Health ................................................ 17
Cystic Fibrosis as a Prototype of Chronic Illness ................. 20
Relevance to Advanced Nursing Practice ............................ 22

Definitions of Concepts
Hassles ...................................................... 25
Cystic Fibrosis .............................................. 26
Health ....................................................... 27
Children with Cystic Fibrosis ................................ 30
Families ..................................................... 32
Assumptions ....................................................... 33
Limitations ....................................................... 33
Summary ........................................................... 34

iii

Chapter II: Literature Review

Introduction ...................................................... 36
Impact of Childhood Chronic Illness .................. . ............ 36
Impact on Families ........................................... 36
Impact on Parents ............................................ 44
Impact on Siblings ........................................... 51
Impact on Affected Children .................................. 58
Summary ..................... . ................................ 68
Stress and Illness ................................................ 69

Chapter III: Conceptual Framework

Introduction ...................................................... 85
Hill ABCX Family Crisis Model ..................................... 86
Adaptation of the ABCX Family Crisis Model ........................ 89

Definitions of Concepts

Event/Non-Event .............................................. 91
Resources .................................................... 93
Appraisal .................................................... 97
Non-hassles ................................................. 103
Hassles ..................................................... 104
Crises ...................................................... 105
Responses. Adjustment. and Adaptation ....................... 107
Feedback Loop ............................................... 110
Summary .......................................................... 113

iv

Chapter IV: Nursing Implications

Introduction .......................................... . .......... 116
Imogene King: A Theory for Nursing .............................. 116
Cystic Fibrosis in Primary Care .................................. 124

Implications for Nursing

Advanced Nursing Practice ......................... i .......... 126
Nursing Education ........................................... 140
Nursing Research ............................ . ............... 146
Questions for Future Nursing Research ............................ 151
Conclusions ...................................................... 151

Appendix A: The Swachman-Kulczycki Rating Score for Cystic Fibrosis.154

r

Bibliography ........................................................ 153

CHAPTER I
Introduction

It is virtually impossible today to read literature from the
biological and social sciences without coming across the terms stress
and stressors. Indeed. even popular lay readings are replete with
references to these concepts. and one can purchase vitamin complexes
which are called "Stress-tabs". Everyone is aware that life in
today's society is stressful. and management of stress has become a
popular focus of programs designed to help improve health.

A stressor is defined as any stimulus that requires an organism
to make corresponding changes (Lazarus. 1984). and no organism could
live without some stressors. Hunger. for example. is a stressor which
motivates humans to search for food for survival. The sensation of
cold is an unpleasant stressor which prompts one to dress warmer. or

to warm the environment to protect the body from damage. At a more

complex level. an impending exam serves as a stressor which motivates
students to study to pass a course.

But in today's complex society. many stressors do not serve a
useful purpose. and the sheer number of stressors encountered by
individuals may overwhelm the capacity to respond. The result is a
heightened level of stress which might have a negative effect on the
life and health of individuals. It is this high stress level that is
of interest to nurses who are concerned with the relationship of

stress to health outcome.

In the past. many researchers have studied the possible link
between health status and life events. or stressors. experienced by
individuals or groups of individuals (Dohrenwend. 1974; Engel. 1977;
Glass. 1977; Holmes and Rahe. 1967; McCubbin. Wilson. and Patterson.
1979; and Parkes. 1972). Their studies have looked primarily at
stressors in the form of major life events which effect change in the
individual's objective environment. More recently. "micro-stressors".
or "hassles" have emerged as potent sources of stress. which can have
a negative effect on the health of individuals (DeLongis. Coyne.
Dakof. Folkman. and Lazarus. 1982; Jandorf. Deblinger. Neale. and
Stone. 1987; and Kanner. Coyne. Schaefer. and Lazarus. 1980).

Hassles. in the literature. are defined as irritating.
frustrating. and distressing demands. present in every day
transactions with the environment. and include annoying. practical
problems such as misplacing things. getting caught in traffic jams. or
breaking a shoelace (Kanner et al. 1980). All persons--children and
adults--experience hassles in their daily lives. These hassles.
though seemingly insignificant at the time of their occurrence. may
actually impact on health outcomes of individuals.

Little research has been conducted to examine whether there is a
relationship between hassles experienced by family members and the
health of an individual family member (DeLongis et al.. 1982; Jandorf
et al.. 1987; Kanner et al.. 1988; and Walker. Ford. and Donald.

1987). Yet leading family researchers contend that what happens to

one family member has an indirect effect on all family members (Hill.
1949; McCubbin and Figley. 1983; Miller and Janosik. 1980; and Walsh.
1982). One can assume. then. that stressors experienced by
individual family members may have a negative effect on the health of
not only that member. but the other family members. as well.

Families of children with chronic illness are known to experience
more stressors than families without chronic illness (McCubbin and
Patterson. 1983). If we include hassles as stressors. can we assume
that these hassles have a deleterious effect on the health of a child
with cystic fibrosis (CF). leading to an escalation of symptoms? If
this is the case. perhaps interventions to lessen the incidence or
significance of daily hassles could indeed improve both quality and
quantity of life for CF children and their families.

The purpose of this scholarly project is to develop a conceptual
framework to be used in assessing whether or not a relationship exists
between the physical health status of children with CF and hassles
reported by these children and their families. This framework will
enable researchers to study individual family member's responses to
hassles. rather than assume that responses made by parents are truly
reflective of family hassles. If hassles experienced by all family
members are shown to negatively influence CF children's health.
appropriate family-centered interventions can be undertaken by the

clinical nurse specialist (CNS) in advanced practice.

In the remainder of chapter one. basic concepts important to the
question of a hassles-health relationship will be discussed. and these
concepts will be defined. An historical perspective will be provided
to assist the reader in understanding the evolution of care and
prognosis for children with CF. This perspective will also
demonstrate the emergence and progression of research concerned with
the relationship between stress and health.

In chapter two. a thorough review of the literature will be
undertaken to facilitate the integration of basic concepts in the
conceptual framework which follows. The literature reviewed will be
critiqued for its relevance to the purpose of this project.

Strengths. as well as weaknesses of the current literature from the
topic area will be delineated.

Following the literature review. a conceptual framework will be
proposed in chapter three. This framework will be derived from the
original work by Hill (1949). who was a pioneer in looking at the
effects of stress on the family. The model will be modified according
to the work of Lazarus and Folkman (1984) and McCubbin (1983).

In the fourth and final chapter. Imogene King's theoretical
framework for nursing will be utilized to explain the relevance of the
question under consideration to nursing practice. The various roles
of the CNS in primary care will be explored. The conceptual framework
will be utilized to explain the role of the CNS in caring for families

of children with CF.

Cystic Fibrosis--The Disease

 

CF is the most common genetic cause of death in the Caucasian
population in the United States. with an occurrence of 1:1600 live
births (Whaley and Wong. 1989). The mode of transmission is
autosomal-recessive. which means that both parents are asymptomatic
carriers of the disease. Two carrier parents have a 1:4 chance of
producing a child with CF with each pregnancy. They also face a 2:4
chance. with each pregnancy. of bearing children who themselves carry
the CF gene. The carrier rate in the Caucasian population is 5%
(Taussig. 1984).

Although CF is a multisystem disorder. it is characterized
primarily by chronic obstruction and infection of the airways. and by
maldigestion and its consequences (Nelson and Vaughan. 1987). These
manifestations are caused by viscous mucus. which leads to mechanical
obstruction of the airways and pancreatic ducts. The production of
this thick. inspissated mucus results from widespread dysfunction of
the exocrine glands. Children with CF. then. most frequently present
in early life with repeated respiratory infection and poor growth
curves secondary to the lack of pancreatic enzymes essential to the
digestion of foodstuffs (Taussig. 1984).

Additional manifestations of CF include nasal polyps. which are
reported in 6% to 24% of patients with CF (Rosenstein and Langbaum.
1985). Hypoprothrombinemia may be present due to vitamin K

deficiency. possibly leading to a bleeding disorder. Intussusception.

an obstructive condition caused by telescoping of the bowel. occurs in
some children. Chronic constipation is common. and may lead to bowel
obstruction (Rosenstein and Langbaum. 1985).

During adolescence and young adulthood. male aspermia and
decreased female fertility are classic presentations (Rosenstein and
Langbaum. 1985). Additionally. 40% to 60% of affected individuals
eventually develop diabetes mellitus. Fortunately. even though this
diabetes requires insulin replacement. it is fairly easily controlled
(Taussig. 1984).

Individuals with CF experience repeated respiratory infections.
Bronchopulmonary infections are the major determinant of morbidity
and mortality (Stutman and Marks. 1987). Because children with CF are
chronically hypoxemic. clubbing of the nailbeds occurs. and cor
pulmonale eventually develops as the right side of the heart struggles
to pump blood against great resistance in the damaged lungs (Allen and
Lemen. 1985). These children are smaller in stature than their
healthy counterparts. develop barrel chests. and are delayed by about
two years in their sexual development (Dibble and Savedra. 1988).

Presently. there is no cure for CF (Levison. Garner. MacMillan
and Cowen. 1987). Additionally. screening measures to test the
general public for the carrier state do not exist. Some recent
advances. as described by Kane (1988). allow antenatal. first

trimester testing for CF. but this testing is usually suitable only

for couples with a 1:4 risk of bearing an affected child-—those who
have already had a child with CF.

In summary. CF has been shown to be a disease dependent upon
genetic transmission. Presently. no means exist for the wide-spread
testing for the carrier state. CF is a multisystem disorder. but the
most serious effects are on the respiratory system. It is this
respiratory involvement which ultimately is the cause of death for

children afflicted with this incurable disease.

Historical Perspectives of CF

 

Although CF was not described as a specific disease entity until
the 19305. one can find references to infants and children with
probable CF in earlier literature. Schmidt (1729). in compiling a
text of folk philosophy. wrote that a salty taste meant that a child
was bewitched. In the mid-18005. Pfyffer (1848) stated "If it tastes
salty when someone is kissed on the brow. then this person is hexed".

and Rochholz (1857). in the Almanac of Children's Songs and Games from

 

Switzerland noted that "the child will soon die whose brow tastes
salty when kissed". These statements all refer to the hallmark of CF
diagnosis. ie. increased levels of sodium and chloride in the sweat of
these individuals.

In literature from the early 19005. one finds multiple references
to children with likely CF. Meconeum ileus and pancreatic pathology

were reported by several authors (Anderson. 1930; and Dodd. 1936).

Many of these children were recognized to have associated respiratory
changes. such as chronic bronchitis and bronchiectasis.

In the 19305. CF was recognized as a specific disease entity.
Although several authors described the multiple manifestations of this
disorder. Andersen (1930) was the first to label the disease CF.
Andersen's work was descriptive of both the pancreatic findings and
the pathological changes in the lungs. In 1946. Andersen and Hodges
proposed the currently accepted autosomal-recessive inheritance
pattern for CF.

di Sant' Agnese described the high concentrations of sodium and
chloride in the sweat of affected individuals in 1953. These sweat
electrolyte abnormalities were the basis for the development of the
sweat chloride test and the subsequent quantitative pilocarpine
iontophoresis test. the latter of which is currently the definitive
diagnostic test for CF.

In 1946, di Sant' Agnese and Andersen first studied the use of
antibiotics in treating lung disease in individuals with CF. Some
physicians prescribed antibiotics prophylactically on a continuous
basis. while others advocated their use only for acute exacerbations
of pulmonary infections (Swachman and Kulczycki. 1958).

Even before the description of CF as a disease entity. exogenous
pancreatic enzyme preparations. derived from hog pancreas. were being
administered as early as 1904 to treat recognized pancreatic

insufficiency. Andersen (1945) described the use of pancreatic

extracts to improve digestion. resulting in reduction of stool weight
and fat excretion for patients with pancreatic deficiency. Andersen
(1945) also stressed the importance of a high calorie. high protein
diet.

The life expectancy for children with CF was initially very
bleak. and in 1948. no known CF patients survived into adolescence
(Levison. Garner. MacMillen. and Cowen. 1987). But by 1966. the
median age of survival with CF was 12 years. Currently. the median
life expectancy is approximately 23 for women. and 28 for men
(HacLusky. McLaughlin. and Levison. 1985). Despite the impressive
advance in treatment and life expectancy. however. the fact remains
that a cure for this devastating disease remains elusive. and affected
individuals and their families are continuously barraged by stressors

related to the disease itself. and the complexities of its treatment.

Treatment of Cystic Fibrosis

The aforementioned improvement in life expectancy for children
with CF is largely credited to early diagnosis and treatment (Whaley
and Wong. 1987; and Wilcken and Chalmers. 1985). At the time of
diagnosis. 3 treatment regimen is initiated which is life-long in
nature. Chest physical therapy (CPT). a combination of aerosolized
medication. percussion. and postural drainage. is instituted on a
twice or more daily basis to help loosen and eliminate viscous

bronchial and bronchiolar secretions (Taussig. 1984). CPT is

10

typically carried out in the home by the parents. and takes a time
committment of one to two hours. every day of the child's life. If
the child is cared for by others. they. too. must learn CPT to ensure
that the child receives these necessary treatments. Relapses in
following through with CPT tend to result in a worsening of the
child's pulmonary status (Zack and Oberwaldner. 1987).

As the child reaches adolescence. mechanical vibrators are
sometimes used to allow for self-CPT. thus relieving some of the time
commitment by the parent (Zack and Oberwaldner. 1987). The use of
self-CPT also gives adolescents a sense of control. decreases
dependence on others. and promotes self-care. Self-CPT. however. does
not lessen the fact that parents still have to monitor the adolescent
to make certain that treatments are carried out. This is not a small
task. when one considers that adolescents are striving for
independence. and sometimes discard interventions that they perceive
as promoting the dependent role (Whaley and Wong. 1989).

During an acute pulmonary exacerbation. which is accompanied by
respiratory infection. children are hospitalized for 10 to 14 days for
intensive intravenous (IV) antibiotic therapy, nutritional therapy.
and CPT (Taussig. 1984; and Whaley and Wong. 1989). Although
hospitalization lessens the parents' direct responsibility for the
daily care of the child. it substitutes new stressors. in the form of
financial concerns. time and transportation to visit the hospitalized

child. sibling jealousy at the attention paid to the sick child. and

11

increased worry by parents as they are confronted again with the
ultimately fatal nature of CF.

Another major aspect of the life-long treatment regimen is that
of optimizing the child's nutritional status. A diet is prescribed
which is higher in calories and protein than is required by an
unaffected child of the same age. and the diet is supplemented with
iron and vitamins. especially fat soluble vitamins A. E. and K (Dodge.
1988). The increased caloric intake in CF is required to compensate
for losses due to malabsorption. and to allow for catch-up growth.
when necessary (Dodge. 1988). With advanced pulmonary disease, there
are additional caloric requirements to fight infection. and for the
increased work of breathing. Together. these factors add up to a
daily need for 120-150% of the recommended daily allowance of calories
for optimum growth and homeostasis (Dodge. 1988).

These increased nutritional needs are met in two ways. First.
additional oral intake is encouraged in the form of well-balanced.
high calorie meals and frequent nutritious snacks (Dodge. 1988). For
infants. special easily digested formulas are used (Nelson and
Vaughan. 1987). If oral intake is insufficient to meet metabolic
needs. nightly feedings. either through naso-gastric. gastrostomy. or
jejunostomy tubes may be instituted as part of the child's home
therapy. These supplemental feedings require nightly placement of a
naso-gastric tube by parents. or surgical placement of gastrostomy or

jejunostomy tubes with nightly hook-ups to feeding bags (Whaley and

12

Wong. 1989). The procedure itself may make children feel dependent
and different. Parents may get less sleep. and also may feel more
confined to the home. Siblings might be frightened by the visible
change in body image of their affected brother or sister.

The second means to meeting the nutritional needs of children
with CF is by administering from 1 to 10 capsules of exogenous
pancreatic enzymes with all meals and snacks to facilitate the
digestion and absorption of ingested food (Dibble and Savedra. 1988;
and Taussig. 1985). Success of this intervention is measured by
weight gain in the child. and a decrease in bulky. fatty. foul
smelling stools which result when food passes through the body. rather
than being digested and absorbed (Taussig. 1984).

The nutritional demands for children with CF are almost
exclusively the responsibility of parents. Meals must be carefully
planned and supervised. and medications (enzymes. vitamins. and iron)
must be monitored. If eating away from parents. such as at school or
at the home of friends. the children themselves must take the
responsibility for taking necessary medications. They may see
themselves as different. and this difference is accented in social
interactions where the sheer volume of medications results in an
awkward situation around the sharing of meals. Children may cope with
this dilemma by not eating. or by not taking their replacement enzymes
(Dibble and Savedra. 1988). Both behaviors result in calories lost

either through malabsorption or omission.

13

At CF clinics where food supplementation is instituted at an
early age. statistics show an improved survival status (Corey. 1980;
Dodge. 1988; and Shepherd. Cooksley. and Cooke. 1980). This knowledge
often leads to a situation in which food becomes a battleground in the
parent-child relationship. This author. who has had ten years
experience in caring for children in a CF research center. has
frequently seen parents of newly diagnosed infants force-feed them to
the point of regurgitation. As children develop. they quickly
perceive parental anxiety over food intake. Again, this author has
observed numerous instances where children have become skilled at
manipulating parental behaviors by refusing to eat what parent think
they should.

The trend in the United States toward home health care (Whaley
and Wong. 1989) will no doubt have an impact on family functioning and
resulting stressors for families with CF children. For example. in
the past. all children were hospitalized when they needed IV
antibiotics during an acute exacerbation of pulmonary status (Hodson.
1984). With advances in home care. however. it is now possible for
children to receive necessary IV antibiotics in their own home via
surgically implanted indwelling catheters (Nelson and Vaughan. 1987).
Typically. more than one antibiotic is prescribed (Doring. Albus. and
Hiby. 1988). which means IV doses of medication every 3 to 4 hours
around the clock for at least 10 to 14 days during periods of

exacerbation. Involved parents will have to learn a new. fairly

14

complex skill. Sleep patterns will be disrupted. Time for parents to
spend with siblings will be curtailed. as will available energy. The
overall impact on the family is obvious.

Throughout this paper. the author deals primarily with
manifestations of CF involving the digestive and respiratory systems.
The reader must remember that additional manifestations may be
experienced as described earlier. The manifestations include nasal
polyps. cor pulmonale. decreased fertility. sterility. diabetes
mellitus. constipation. and intussusception. Any one of these would

add stressors to CF children and their families.

Stressors and Cystic Fibrosis

 

In the preceeding discussion of CF. it has been established that
families with CF children experience many stressors. Since the care
of these children occurs primarily in the home. families shoulder the
major responsibility for the routine management of the illness
(Walker. Ford. and Donald. 1984). The ongoing. never-ending nature of
this care many deplete resources of time. money. and energy.

CF is a chronic disease that may produce unique psychological and
social problems in patients and families. Parents often express guilt
over their role in the hereditary nature of a disease which ultimately
leads to the untimely death of their child. Although 50% of affected
children reach the mid-twenties. 50% do not (MacLusky. McLaughlin. and

Levison. 1985). These factors together make many parents reluctant to

15

enforce uniform and reasonable discipline. or to encourage "normalcy"
in the children. Additionally, parents may not enforce adherence to
the strict treatment regimen. particularly when the child is

resistant. because "the child is going through so much already" (Whaley
and Wong. 1989).

The treatment of CF is time consuming and exhausting. and
disrupts the already established patterns of family functioning. Role
boundaries and their associated responsibilities will change. as
family members assume varying degrees of care of the child. or take on
new tasks to help ease the increased workload (Miller. 1980; and
Walsh. 1985). Involved parents will have less time for each other,
and siblings may resent the fact they they no longer receive as much
parental attention as they received prior to the diagnosis of CF. The
affected child might perceive that he is a burden. and assume a large
measure of guilt. which in itself. is an added stressor.

Family finances may be taxed in providing the special equipment.
food, and medications needed by children with CF. Mothers may feel
the need to work outside the home to help with finances. but be unable
to do so because of their perceived need to be with the child.
Frequent trips to the nearest CF treatment center. and
hospitalizations add to the financial burden. With more and more of
these children reaching adulthood. and moving out of their family
homes to become productive members of society. a new problem emerges.

in that health insurance becomes difficult to obtain.

16

The ongoing. continuous nature of CF treatment imposes daily
reminders of the illness on the family and affected child. There is
no end in sight. Treatment terminates only at the time of death.

Children with CF are constantly confronted with the fact that
they are different from their peers. Pancreatic enzymes must be taken
at all meals and with snacks. Typically. CPT is performed on a twice
or more daily basis. This specialized treatment makes these children
different. and may prohibit them from participating in the same
activities as other children. Overnight experiences. including pajama
parties. school excursions. and usual camping experiences might not be
possible. Participation in physically active events is hindered by
decreased stamina. and children may need to be excused from regular
gym or recess activities. Boys who dream of being star football
players soon find that their dream is unattainable. Frequent
respiratory infections may cause these children to miss school. and
possibly. to lose their place in the peer group. Small body stature
and chronic cough may interfere with the development of a positive
body image.

Recognizing that CF imposes many stressors on children and their
families. numerous researchers have focused their efforts on the study
of the effects of the stressors (Cowen. Corey. Keenan. Simmons. Arndt.
and Levison. 1985; McCubbin. McCubbin. Patterson. Cauble. Wilson. and
Warwick. 1983; and Stullenbarger. Norris. Edgil. and Prosser. 1987).

But most of these researchers have not truly looked at the effects of

17

the stressors as reported by individual family members. Rather. the
focus has been placed on parental perceptions. particularly the
perceptions of the mother. as to what stressors are being experienced
by individual family members. and what their effects might be. But in
keeping with family systems theory (Walsh. 1985). the family must be
viewed as an interdependent system. in which changes in one member
impact on all other members. Systems seek to maintain equilibrium in
response to internal and external stressors. Families of CF children
are constantly faced with stressors. and the ongoing hardships imposed
by them may make it difficult to maintain equilibrium.

Assuming a family systems theory approach. it is quite evident
that studies which address family functioning in CF are critical in
determining how health care providers can best serve family needs.
Indeed. the majority of care for children with CF occurs in the home
and is provided by the family. Therefore. the concept of family
response to stressors becomes a central issue. particularly to the CNS

in primary care.

Hassles and Health

 

The majority of studies of stressors in family functioning have
looked at stressors as major life events which affect change in an
individual's objective environment. and it is accepted that an
increase in life events has a negative impact on the health of

individuals (Hyman and Woog. 1982; and Smith. Gad. and O'Grady. 1986).

18

But recently. there has been recognition that micro-stressors. or
hassles. acting cumulatively. or piling up. can also be potent sources
of stress (Kanner. Coyne. Schaefer. and Lazarus. 1980; Lazarus and
Folkman. 1984; and Patterson and McCubbin. 1983). Hassles are
conceptualized as irritating. frustrating. distressing demands that
are present in everyday transactions with the environment, and include
annoying practical problems such as misplacing things. getting caught
in traffic jams. or breaking a shoelace. Hassles occur in the lives
of both children and adults. and. if they accumulate. they are energy
depleting. The results of some research suggest that individuals who
experience many hassles. or who perceive that the hassles they
experience will require much adjustment. do indeed experience negative
effects on their health (Lazarus and Folkman. 1984; and Zautra.
Guarnaccia. and Dohrenwend. 1986).

Examples of hassles might be misplacing the car keys. and finding
that one does not have clean underwear on a particular morning. If
these hassles occur on the day of an early morning appointment at the
CF center 30 miles away. they are likely to pile-up with other
stressors associated with getting to the appointment on time. Thus.
they will be more troublesome than if they had occurred on a day when
nothing in particular was scheduled.

The preceding statement leads to an important consideration. ie.
"Do hassles affect health if they are not perceived to be stressful?"

It is common knowledge that the same stressor (hassle) evokes

19

different responses in different individuals. And the same stressor
(hassle) evokes differing responses in the same individual when it
occurs at different times under different circumstances. Folkman and
Lazarus (1984) attribute these differences to cognitive appraisal. a
process whereby individuals evaluate stressor situations according to
how much these situations tax or exceed their adaptive resources (p.
27). A conceptual model which is developed to look at the
relationship between family hassles and health of children with CF
must allow evaluation of both the occurrence and the perceived threat
of these hassles to individuals.

It is important that health care providers be sensitive to the
hassles reported by CF children and their families so appropriate
support can be provided. The depletion of energy which might occur
from dealing with hassles takes away potential energy for meeting the
demands of the disease and its treatment. Ultimately. this depletion
of energy contributes to a decline in the health of these children.

Traditionally. there are more avenues of support available for
major life events than for hassles. But if it is found that hassles
are an important contributing factor to health status. support must
also be provided during these seemingly insignificant occurrences. In
addition to receiving support. these families must be helped to
develop the skills necessary to decrease hassles. and to deal with the
hassles which are unavoidable. If the concept of hassles is viewed in

the context of family systems theory. it becomes clear that hassles

20

experienced by all family members must be considered when the CNS
proposes interventions which are aimed at optimizing the CF child's

health.

Cystic Fibrosis as a Prototype of Chronic Illness

 

Although CF is ultimately fatal. it is regarded as a chronic
disease (Taussig. 1985). Since it is commonly diagnosed in the first
year of life. CF represents a formidable adversary that affects family
functioning on a daily basis. Its genetic property might be expected
to lead to parental guilt or blame. The bulk of the required
treatment is administered in the home. thereby requiring changes in
familial role functioning. Many children survive into young adulthood
or beyond. and thus have to pass through each developmental state
"under the influence" of CF. Similarly. the family. as it passes
through its own life cycles. will be affected by the presence of a
member with CF (Rolland. 1987).

CF is a relapsing illness. characterized by remissions and
exacerbations (Taussig. 1984). The distinguishable feature of this
kind of illness is the alternation of relatively stable periods of
varying length. characterized by a low level or absence of symptoms.
with periods of flare-up or exacerbation. often leading to
hospitalization (Taussig. 1984). Strain on the family system is
caused by both the exacerbation itself and the ongoing uncertainty of

when an exacerbation is going to occur. A critical component is

21

family flexibility that permits movement back and forth between two
forms of family organization.

The uncertainty of how CF will progress with any given child is
an important concept for the CNS to consider. Uncertainty occurs in a
situation in which an individual is unable to assign definite meaning
or value to events. and cannot predict outcomes. Mishel (1981. 1988)
demonstrated that uncertainty is associated with increased anxiety.
depression. and pessimism about the future. These outcomes may
interfere with the family's ability to deal with stressors. and. in
the case of CF. may have a negative impact on the health of these
children.

The fact that CF ultimately shortens one's life is a feature
which has profound psychosocial impact. The "It could happen" nature
of CF creates the possibility of over-protection by the family. The
ill member may manipulate other family members for powerful secondary
gains (Whaley and Wong. 1989).

For researchers interested in studying the relationship of family
functioning and chronic illness. CF is a single disease entity which
profoundly impacts all aspects of the family over a long period of
time. Meyerowitz and Kaplan (1967) bemoaned the fact that. as a
chronic illness. CF had received little attention from investigators
of family functioning. Since Meyerowitz's and Kaplan's classic study.
however numerous researchers have realized that families with a CF

member represent a very fertile area of study. and one can now find

22

numerous related books and articles in the literature (Dibble and
Savedra. 1988; Gayton. Friedman. and Tavormina. 1977; Holroyd and
Guthrie. 1986; Lewiston. 1985; Matthers. 1984; McCubbin and Patterson,
1983; and Orenstein. 1985).

From the preceding discussion. it is clear that families of
children with CF experience a multitude of stressors over the child's
lifetime. These stressors are experienced by all members of the
family. and their impact is continued throughout individual and family
developmental stages. For these reasons. CF represents an ideal
prototype disease when one is concerned about the possible
relationship of hassles to the health of chronically ill children.
Additionally. and from a more practical point of view. research in
this area is facilitated by the fact that children with CF are
typically seen at regular intervals at regional CF centers. Thus,
they represent a population that is fairly easy to access for study

purposes.

Relevance of this Project to Nursing Practice

 

Nursing has been defined as "the diagnosis and treatment of
individual and family responses to actual or potential health
problems" (American Nurses Association. 1980). CF is an actual health
problem which demands expert nursing care. But it is also a disease
which is associated with potential health problems as it progresses

over time. These potential health problems impact the physical.

23

psychosocial. and spiritual arenas for all family members. The CNS
has a special interest in helping family members cope with these
actual and potential health problems.

There exists a substantial body of research which shows a
relationship between stressful situations and physiologic responses in
the body (Cannon. 1929; Cohen and Lazarus. 1983; and Selye. 1957). In
explaining this relationship. it is assumed that the human body
attempts to maintain homeostasis when confronted with internal or
external change. Any circumstance which upsets the body's steady
state calls for adjustment. and any adjustment attempts require energy
(Bargagliottli and Trygstad. 1987; and Patterson and McCubbin. 1983).

Because hassles represent departures from usual patterns of
functioning. dealing with them requires an expenditure of energy.

This expenditure of energy occurs as the individual attempts to
achieve equilibrium. However. if hassled. individuals may not have
the time or energy for self-care. CF children and their families have
had their energy taxed greatly already--children because of their
impaired nutritional and respiratory status. and families because of
increased expenditures of time. finances. and physical and
psychological stamina.

The CNS in primary care must understand the effects that daily
hassles have on CF children and their families if she wishes to
provide the most therapeutic interventions. When these effects are

understood. the CNS directs her efforts toward helping families

24

decrease their exposure to hassles. For those hassles that are
unavoidable. she facilitates family adaptation to them with the least
amount of energy expenditure.

Traditionally. nursing intervention in CF has been in direct
proportion to the sickness of the child; ie. the sicker the child. the
more the nursing interventions (Meyerowitz and Kaplan. 1967). It
might be true. however. that when children are sicker and confined
largely to the home or hospital. parents would feel more in control
and less anxious than when children are less sick and attending
"normal" childhood functions away from home (Meyerowitz and Kaplan.
1967). Attendance at school and associated activities. clubs. and
visiting friends may cause more anxiety in parents because they can't
control and supervise everything their children are supposed to do--or
not do--such as taking pancreatic enzymes with meals. avoiding excess
physical activity. shunning contact with persons with respiratory
infections. and staying away from cigarette or other smoke.
Consequently. when children are sicker. and more under the direct
control of parents. fewer hassles might be reported.

If it is true that parents report more instances of hassles when
children are less sick. nurses must intensify interventions in the
earlier stages of the disease. Appropriate interventions might take
the form of anticipatory guidance. and the development of problem-

solving skills. This early intervention could promote positive family

25

functioning. which may possibly decrease the amount and intensity of
hassles experienced at a later time.

The assumption that families may need more nursing interventions
when CF children are less sick and under less parental control than
when they are sicker and under more parental control is based on the
early work of Meyerowitz (1967) cited in a previous paragraph. Their
research is considered classic in childhood chronic illness
literature. and no more recent work investigating the relationship of
parental control and the anxiety they report was found by this author.
Obviously. the relationship between health and activity status. and
perceived parental control of the situation is an area which needs
further research. especially by nurses in advanced practice who care

for these families.

Definition of Concepts

 

Hassles Traditionally. stressors have been defined as those life
events and related hardships that are of sufficient magnitude to bring
about change in the family system (Burr. 1973; Hill. 1949; and Walsh.
1985). Stressors are life events or transitions which impact on the
family unit and produce change in the family social system (McCubbin
and Patterson. 1983). These stressors and their impact have been
measured as major life events (Dohrenwend and Dohrenwend. 1974; and

Holmes and Rahe. 1967).

26

Assessing major life events. however. reveals little about the
process of day to day interactions of individuals with their
environment. This day to day interaction with one's environment is
fraught with relatively minor stressors that can be potent sources of
stress. These seemingly insignificant stressors have been labeled
"hassles". Hassles are defined in the literature as "the irritating.
frustrating. distressing demands that. to some degree. characterize
everyday transactions with the environment"(Kanner et al. 1980. p. 3).
Kanner's definition of hassles will be utilized throughout this
scholarly project.

Cystic Fibrosis Earlier in this paper. CF was defined as a

 

multisystem disorder, characterized primarily by chronic obstruction
and infection of the airways. and by maldigestion and its consequences
(Nelson and Vaughan. 1987). CF is ultimately fatal. and the median
age of survival is the mid-twenties (MacLusky. McLaughlin. and
Levison. 1985). As an autosomal-recessive disease. both parents must
be carriers. and they run a 1:4 risk of producing a child with CF with
each pregnancy. Currently. there is no cure for CF. and testing for
the carrier state is not available to the public (Kane. 1988).

The definitive diagnosis of CF is made using the quantitative
pilocarpine iontophoresis test (Taussig. 1984). This test should be
performed whenever clinical symptomatology indicates the need to rule

out CF. The test should also be performed on all children who are at

27

high risk. ie. have a sibling with diagnosed CF. The test is
considered positive if sweat chloride levels are above 60 mEq/liter.
Children with CF. when discussed in this paper. are children who have
had quantitative pilocarpine iontopheresis chloride levels in the
diagnostic range.

Health Status The World Health Organization defines
health as a state of physical. mental. and social well-being. and not
merely the absence of disease or infirmity (Detwillcr. 1984. p. 88).
Terris (1975) expands this definition in asserting that "health is a
state of physical. mental. and social well-being and ability to
function. and not merely the absence of illness or infirmity" (p.
1037). Imogene King. in her theory for nursing (1981). defines health
as the "dynamic life experiences of a human being. which implies
continuous adjustment to stressors in the internal and external
environment through optimum use of one's resources to achieve maximum
potential for daily living" (p. 5). All three of these definitions
point to a holistic orientation. rather than simply looking at
physical parameters. King's definition. however. contains the added
dimension of continuous adjustment to stressors in the environment.
and that seems to more accurately portray the view of health that will
be developed in this authors conceptual framework which follows in
Chapter III. Therefore. King's definition of health will be used

throughout this paper.

28

Health is a major concept in the question posed in this paper.
ie. Is there a relationship between the health status of school-aged
children with CF and the hassles experienced by these children and
their families? Consequently. it is necessary to know how the concept
of health can be measured. The tool which is most widely used to
measure the health of children with CF is the Swachman and Kulczycki
(1958) rating scale. Using this scale. CF children are categorized
according to participation in activities. physical exam findings;

nutritional status. and chest x-rayAfindingg.

 

At first glance. this scoring system appears to neglect the
psychosocial dimensions of the effects of CF. But on closer look. it
is seen that an assessment of the general activity of these children
provides some information about their psychosocial adjustment to CF.
Peers are extremely important to school-age children. and
participation in school and other age-related activities assures
interactions with peers. to a lesser or greater extent. For that
reason. children who score fairly well on the strictly physical
parameters of CF would receive a lower over-all score for health if
their parents were keeping them out of school for one reason or
another. Probably. children who are more active perceive their health
status to be better than if they are not participating in usual

activities.

29

In devising their scoring system. Swachman and Kulczycki (1958)
followed one hundred five children with CF for a five- to fourteen-
year period of time. Variables of CF treatment were not manipulated
in their study; rather. the health of these children was measured at
three month intervals to provide descriptive data as to how they
progressed with the disease. It appeared from their writing. however.
that Swachman and Kulczycki managed their CF children in very similar
ways. keeping the effect of varying treatment modalities at a minimum.

The children in the study were followed for at least five years
to a maximum of fourteen years. This longitudinal method of data
collection allowed for a determination of the variables of general
activity. physical exam findings. nutritional status. and chest x-ray
findings as the disease progressed over time or ultimately caused
death. The authors were able to develop diagnostic criteria for each
of the four categories of variables. A ranking of severity of disease
involvement was determined for each category. ranging from minimal
(86-100 points) to severe (under 40 points). The Swachman-Kulczycki
scoring system appears in Appendix A of this paper.

Swachman and Kulczycki were able to show that children with CF
showed varied speeds of deterioration. The health of some children
declined very rapidly. while others remained stable for long periods
of time. Therefore. the Swachman-Kulczycki scoring system is used not

so much as a prognostic indicator. but rather it serves as a means to

30

clinically and consistently categorize CF children at any given stage
of their disease. From a research perspective. this clinical
categorization allows researchers to study the relationship of
different variables to the health of the children. Treatment
modalities. both physical and psychosocial. can be manipulated. and
life experiences can be measured. to see if there is a corresponding
change in health status. both long- and short-term. For these
reasons. the Swachman-Kulczycki scoring system can be used to study
the possible effects of family hassles on the health of children with
CF. Because the Swachman-Kulczycki scoring system tests primarily
physical parameters of health. however. other scales will also be used
to give a holistic perspective of health measurement. inclusive of
psycho-social factors.

Children with CF For the purposes of this project. children will

 

be defined as those age seven through eleven years. According to the
psychologist. Jean Piaget (1977). children of this age are becoming
increasingly logical and coherent in thought. They are able to
classify. sort. order and organize facts about the environment to use
in problem solving. but still in a very concrete way. They are able
to deal with several different aspects of a situation simultaneously
(Piaget. 1977). Children of this age are generally enrolled in school
grades two through six. and are developing reading and writing skills.
All of these intellectual capacities are important considerations when

devising a tool for data collection.

31

Socially. these children are ready to move away from the family
for varying periods of time into an environment where peers become
increasingly important. School presents an arena for children to
engage in experiences and relationships outside the family (Whaley and
Wong. 1989).

A sense of accomplishment is achieved somewhere between seven
years of age and adolescence (Whaley and Wong. 1989). This sense
involves an eagerness for participation in meaningful and socially
useful work. Interests expand in these middle years. and with a
growing sense of independence. children want to engage in tasks,that
can be carried through to completion. Much satisfaction is gained
from independently exploring and manipulating the environment.
Sources of reinforcement. in the form of rewards. grades. privileges.
and recognition are a stimulus for motivation.

A sense of accomplishment also involves the ability to work
alongside. or to compete with. others. Cooperation. as well as the
skills of negotiation. are important skills to be learned.
Involvement with peers is critical to this accomplishment.

Physically. children aged seven to eleven should experience slow.
steady growth in height and weight. not marked by dramatic growth
spurts. From a psychoanalytic point. this is the time of latency.
Latency occurs as a period of sexual tranquility between the Oedipal
phase of early childhood and the erotocism of adolescence (Whaley and

Wong. 1989).

32

When assessing the perception children have of the occurrence of
hassles in their environment. it is necessary that they understand the
concept and be able to communicate that hassles have occurred. The
intellectual development of children age seven to eleven facilitates
accurate understanding and communication. Also. the relative calm in
this age group. without stormy physical and emotional changes. helps
ensure more consistent responses on the part of children.

Families For the purposes of this study. family refers to a
single parent or married couple and their natural and adopted children
who live in the same household. AS a generic term. family encompasses
a multiplicity of meanings. In the American Heritage Dictionary
(Morris. 1982). a family is described as "the most instinctive.
fundamental social or mating group in man and animal. but especially
the union of man and woman through marriage. and their offspring;
parents and their children" (p. 474). Morris' definition makes
reference to the traditional nuclear family. ie. a husband. wife. and
their children (natural and adopted) who live in the same household.
Variations in the family include extended families. consisting of two
or more families related by blood or marriage. and single parent
families. which result either from divorce. or the recent trend for
single individuals to adopt children (Miller. 1980). In order to
limit the number of variables. the author is confining the definition

of family to traditional two-parent. or single parent families.

33

Assumptions of the Conceptual Framework
Hassles are a daily occurrence.
Hassles are energy depleting to the child with CF.
The diagnosis of CF and its treatment are accompanied
by stress.
Children age seven through eleven are capable of honestly
and accurately reporting on the incidence and impact of
stressors. as are their parents and siblings.
The Swachman-Kulczycki rating score is an accurate
indicator of the health status of children with CF.
Families are open systems. capable of exchanging energy.
information. and matter with the environment and with each
other.
The experiences of all family members will have an impact on

each individual family member.

Limitations
Confounding of dependent and independent variables. The scale
currently in use to measure hassles (Kanner. Coyne. Schaefer.
and Lazarus. 1980) contains some items that are reactions to
stressors (ie. the experience of fear. concerns. worries.
conflict) rather than environmental inputs that are independent

of the reaction or state of mind of the individual. Thus.

34

dependent and independent variables may blend. in a circular
kind of causality.

2. Appropriateness of hassles categories. The original hassles
scale (Kanner et al.. 1980) does not itemize hassles that
are appropriate to children's experiences. Barnes. Peek. and
Spence (1988) have devised a modified children's hassles
scale. but this data collection tool has had limited usage.

3. Limitations in data collection. There is currently no means
of collecting data on the occurrence and impact of hassles on
infants. toddlers. and pre-schoolers. Thus. data collected
on hassles in studies based on the proposed conceptual
framework may not truly represent families with children
of these ages.

4. Factors other than hassles may impact on the physical health
of children with CF. and are beyond the scope of the
proposed framework.

5. Presently. there is no way to truly obtain measures of family

hassles.

Summary
In chapter one. the author has provided an introduction to the
question of the relationship of hassles to health status of children

with CF. Rationale was given for using CF as a prototype of chronic

35

illness in children. definitions were developed. and the relevance of
the question to nursing practice was explored. Chapter II will
contain a review and critique of research literature pertinent to this
project. In Chapter III. a conceptual framework to guide the study of
the relationship of family hassles to the health of children with CF
will be developed. Chapter IV will focus on a discussion of the
implications of the concept of hassles to the CNS in primary care.
Imogene King's theory for nursing (1981) will be used to explain the
role of the clinical nurse specialist in facilitating the adaptation
of families with children with CF to the everyday hassles they

encounter .

CHAPTER II
LITERATURE REVIEW
Overview
In this chapter. literature pertinent to the development of a
conceptual model to study the relationship between the health status
of school-age children with CF and the hassles reported by these
children and their famililes will be reviewed and critiqued. Two major
bodies of literature will be analyzed. The first is literature
related to childhood chronic illness and its impact on affected
children. siblings. parents. and the family as a whole. The second
body of literature is that which deals with the relationship of
stressors and illness.
Impact of Childhood Chronic Illness on Families. Parents.

Siblings. and Affected Children

 

Impact on the Family Two early studies (Meyerowitz and Kaplan.

 

1967; Tropauer. Franz. and Dilgard. 1970) which investigated the
relationship between CF and family functioning will first be cited
because they gave initial direction to research in the area of
childhood chronic illness and are considered classics. Meyerowitz and
Kaplan (1967) studied 111 families of children with CF and explored
the effects of CF on the personalities of family members.
intrafamilial role functioning. and family-community relationships.
Data were gathered from parents of CF children by personal interview

by staff members from a major CF center. All hypothesized

37

relationships between variables reported were statistically
significant at the 0.05 level or beyond.

The findings of the Meyerowitz-Kaplan (1967) study are very
comprehensive. and not all of the results relate to the proposed
conceptual model. Some of their findings which are relevant include
the fact that 96% of parents surveyed reported that family routines
were very difficult since the diagnosis of CF. resulting in major
change in family functioning. Secondly. parental feelings of distress
were related to the children's activity outside the home. Parents of
children who engaged in outside activities and sports. and were.
attending school. were significantly more likely to display
psychophysiological manifestations of stress than parents of children
not thus engaged. Finally. parents in families consisting of one CF
child and more than one normal child reported better adaptation in
family functioning with less disruption than parents in families with
only a CF child. or a CF child and one normal sibling. Although these
findings are old. they have not been disputed in more recent
literature.

Two major limitations of the Meyerowitz-Kaplan (1967) study
emerge as salient. First. their study families were intact two-parent
families only. perhaps not truly relevant in current society's trend
toward single-parent and reconstituted families (Miller. 1980).
Secondly. the authors obtained responses from parents only. making the

assumption that they were representative of familial responses. These

38

criticisms point out the need for updated studies which include non-
traditional families. and which elicit responses from family members
other than just parents.

Strengths of the Heyerowitz-Kaplan (1967) study are that the
number of families included was large (n=111). families were viewed
from both systems and developmental perspectives. and results of the
study suggested multiple areas of further research in understanding
the impact of chronic illness on family functioning. Even in modern
research. the Meyerowitz-Kaplan (1967) study is frequently cited as
the basis for new investigation.

The second major early study of family functioning and chronic
illness was that of Tropauer. Franz. and Dilgard (1970). Cognizant of
the fact that improved life expectancy for children with CF brings
with it the need for ongoing family adjustment and adaptation.
Tropauer et al. (1970) conducted psychological studies of 200 children
with CF and their mothers. Data were elicited from these mothers and
CF children only; data about remaining family members were collected
from the mothers only. Their findings. reported in an anecdotal and
speculative fashion. suggested that CF imposed considerable emotional
impact on the child and his family. especially when family members
were unable to communicate with and support each other. The small
number (n=20) may not be representative of families with CF children.
The primary outcome of the Tropauer et al. study was to suggest areas

of future research. rather than report analytically sound findings.

39

More recently. Venters (1981) observed that the majority of
family stress literature overlooked exploration of family dynamics in
families faced with a long-term and continuous stressor. such as CF.
Little focus had been placed on identifying the ability of families to
maintain and/or develop functional. ongoing behavioral patterns to
meet present and anticipated future illness-related hardships. In an
attempt to fill this gap in the literature. Venters (1981) conducted a
study to examine the typical course of familial adaptation to the
chronic stress of CF. and to determine how the behaviors of families
who demonstrated adequate long-term family functioning differed from
behaviors employed by those families who experienced difficulty with
family functioning over time.

Venter's (1981) study included 100 families who were currently
managing 129 children with CF. One time interviews were conducted
with parents who brought their children to a major CF research and
treatment center. Responses were not elicited from the children
themselves. Using the Adequacy of Family Functioning Scale. the 100
study families were categorized into high. medium. or low levels of
family functioning. Having established these three levels of
functioning. the interview data were then searched for the most
salient concepts which would suggest group commonalities of response
to CF from the time of diagnosis until data was being collected. as
well as differences concerning functional and dysfunctional family

responses to CF. Characteristics of high level functioning families

40

were found to be the ability to give meaning to the illness. and the
sharing of the burdens of CF. not only with the family. but with
outside help. as well. Conversely. low level functioning families
were generally unable to give meaning to the illness. and were unable
share the burden with the family. or with outside sources.

Venters (1981) acknowledges certain limitations of the data
obtained in her study. For example. self~report data relies upon
obtaining information about familial behavior over time through
recall. and can be inaccurate due to perceptual biases. In addition.
since the study population was not a random sample of all CF families.
but most of the complete population which visited the clinic during
the study period. generalizability of the findings extends only to the
participants. Venters (1981) did not provide documentation about the
reliability and validity of the Adequacy of Family Functioning Scale.
leaving the reader uncertain about how representative the findings
were.

Cowen. Corey. Keenan. Simmons. Arndt. and Levison (1985)
conducted a study to determine family adaptation and psychosocial
adjustment to CF in pre-school children. Data were obtained one time.
with no longitudinal follow up. Parents of 51 pre-schoolers with CF
completed Problem Inventory. Pre-school Behavior. and Family
Assessment scales. These measures solicited (a) parents' perception
of child-related problems; (b) the component processes of family

functioning; and (c) the behavior of the pre-school child. Parents of

41

a control group of 31 healthy pre-school children completed the same
questionaires. The reader will note that this is the first study
cited so far which utilized a control group.

Cowen et al. (1985) describe the validity of the Pre-school
Behavior questionnaire as high. with the scale differentiating normal
children from those with psychological disturbance (P<0.0001). and
replication as good. with a mean inter-rater reliability of 0.79. The
Family Assessment Measure. while undergoing refinement at the time of
the writing. showed test-retest reliability of 0.93 for adults and
0.94 for children. The Problem Inventory scale was a checklist
designed to assess parents' views of ten child-related difficulties
their family has had to face. and no standardization of norms were
available.

Surprisingly. parents of healthy pre-schoolers reported more
child-related problems than did parents of CF children (P<0.001).
Perhaps this is because parents who must confront the severity of CF
go on to minimize the normal stress of this developmental period.
Also. unexpectedly. it was shown in this study that there was no
significant difference in family functioning between the study and
control groups. Problems in family functioning which were reported--
extra demands on time. life centered around the child. and need to
constantly watch the child-~were remarkably similar in both the study
and control groups. Speculatively. this latter finding may be related

to the fact that pre-school age children with CF are often not

42

seriously ill during this early stage of their disease. Additionally.
all children in the study had been diagnosed with CF for at least one
year. possibly giving families opportunity to adjust. Overall. the
findings of the Cowen et al (1985) study contradict earlier
investigations of family life with chronic childhood illness which
conclude that the experience is largely negative (HcCollum and Gibson.
1970; Mattson. 1972).

Aside from the lack of standardization of one of the data
collection tools in the Cowen et al. (1985) study. a limitation of the
study was the lack of a longitudinal perspective for the exploration
of psychological and physical states during the pre-school period.
One-time data collection prevented a description of parent-child
interaction over time. and especially across periods of illness
exacerbations.

Stullenbarger. Norris. Edgil. and Prosser (1987) used
questionnaires to obtain a one-time sample of CF mothers' perceptions
about actual and ideal parenting styles. CF related daily problems.
and competence behavior their children displayed while exploring the
environment. Earlier studies had suggested that children with chronic
illness may experience difficulty adapting to their environment.
secondary to maladaptive family behaviors (Gayton and Friedman. 1973;
and Pless and Roughman. 1971). but this finding was not supported by
Venters (1981) or Cowen et el. (1985). Criteria for entry into the

study included being the primary caregiver of the CF child. age of the

43

CF child being 1-4 years. and bringing the child for care to the
pulmonary clinic conducting the study (n=26). The three data
collection tools were the Problem Areas Checklist (r=.68). Childhood
Personality Scale (r=.92). Parents' Report of Ideal Parenting Style
(r=.67). and Parents' Report of Actual Parenting Style (r=.85).
Pearson product moment coefficients were computed to determine the
relationship between any two variables. .Study findings indicated that
problems reported by mothers did not contribute significantly as a
predictor variable for competence scores. The mothers' ideal
parenting style was the best child competence score predictor.'perhaps
because mothers were more like the ideal parent they described than
the real parent they perceived themselves to be. Probably the most
important finding of the Stullenbarger et al. (1987) study is that
mothers of CF children did not report child competence scores or
actual parenting scores below the median. suggesting effective
adjustment and adaptation to CF. Limitations of the Stullenbarger et
al. (1987) study include a small number of subjects (26). lack of
randomization and control groups. no longitudinal collection of data.
and eliciting parental responses from mothers only.

This concludes the literature review on research related to the
effects of chronic illness on the family. In these studies. many
methodological problems exist. including the lack of randomization.
small numbers of subjects. and lack of control groups. The most

glaring limitation to these studies has been the assumption by the

44

authors that responses obtained from either one or both parents truly
reflects the impact experienced by the family when a member has a
chronic illness. Future family research in this area must attempt to
get at the impact of chronic illness on all members. in order to
intervene to facilitate successful adaptation.

Effects on Parents Very little research was found related to the
effects of chronic illness on parents specifically. Most of the early
work in this area was done when the child was mentally retarded
(Faber. 1959; Olshansky. 1962; Weisbren. 1980) or had physical
structural defects (Barsch. 1968; Gardner. 1969). Four studies were
found. however. that were relevant to the effects of childhood chronic
illness on parents and will be discussed in this section.

McCubbin. McCubbin. Patterson. Cauble. Wilson. and Warwick (1983)
wondered if there are coping patterns parents use to manage family
life and health successfully when a child member has a chronic
illness. and if these coping patterns have any effect on the health of
the child. Data were collected on 100 families who had a child with
CF. using the Coping Health Inventory for Parents (CHIP). This
instrument was developed by McCubbin. McCubbin and Cauble in 1979. It
is an 80-item checklist providing self-report information about how
parents perceive their overall response to the management of family
life with a CF child. Coping behaviors. such as "believing that my
child(ren) will get better" or "talking with the medical staff when we

visit the medical center" are listed. Parents record how helpful (0 to

45

3) the coping items are to them in managing the illness situation.
Responses fall into three major coping patterns: 1) maintaining family
integration. cooperation and an optimistic definition of the
situation; 2) maintaining social support. self-esteem and psychological
stability; and 3) understanding the medical situation through
communication with other parents and consultation with the medical
staff. Using Chronbach's alpha. reliabilities of .79. .79. and .71
have been computed for the three coping categories respectively. In
addition to parental coping behaviors. data were compiled on the CF
childrens' health status. using the indices of height. weight. and
pulmonary functioning.

After analyzing their data. McCubbin et al. (1983) concluded that
fathers' coping behaviors were primarily associated with the system
maintenance dimensions of family life. promoting family structure.
activities. and planning while maintaining family organization with
rules and procedures. Hothers' coping behaviors. on the other hand.
were focused on the interpersonal dimensions of family life--family
cohesiveness and family expressiveness--encouraging members to be
concerned. helpful and supportive of each other and to act openly and
to express their feelings directly.

When considered with the child's health status. positive coping
by both father and mother was associated with improvements in all
three health indices of height. weight. and pulmonary functioning.

These findings lend support to the proposed conceptual framework

46

presented in this paper. in which the author proposes that family
functioning in response to hassles affects the health of children with
CF. The findings also suggest that parental coping is a viable target
for primary intervention. and that strengthening of coping efforts can
positively impact CF children's health status.

The McCubbin et al. (1983) study appears to be methodologically
sound for the most part. The authors concede that the use of a single
sample of families without the benefit of cross-validation poses some
limitations in generalizability. But it does add to the body of
knowledge regarding childhood chronic illness because it focuses not
on the hardships these families face. but on what parents do to try to
actively cope with the situation.

The second study in this section was conducted by Powers. Gaudet.
and Powers (1986). and also was concerned with assessing the coping
patterns parents utilize when a child has a chronic illness. Powers
et al. used the same data collection tool as did McCubbin et al.
(1983) (CHIP). but were primarily interested in determining if the
independent variables of sex or ethnicity (Anglo-American. Hispanic-
American. Native American Indian. Asian American. and black) altered
coping reponses. Health of the child was not looked at. and the
chronic illnesses experienced were not identified.

Subjects of the Powers et al. (1986) study were 107 parents
representing 65 families who belonged to a support organization for

parents of chronically ill children. Self—report data were obtained

47

at one time. Analysis of the data showed that mothers overall scored
strengthening the self and comprehending the medical situation as more
helpful coping responses than did fathers. When Anglo-Americans and
Hispanics were compared. Anglo-Americans scored strengthening the self
by getting away from home tasks and becoming more involved in social
activities as being more helpful in coping than did Hispanics. This
finding reflects sexual and cultural differences which must be
considered when one is helping families develop effective coping with
childhood chronic illness.

Walker. Ford. and Donald (1987) were interested in finding out if
the independent variables of age and severity of illness (CF) were
correlated with maternal stress levels. The sample consisted of 32
mothers of children with CF and 32 mothers of healthy children. Age
groups (4-5 yrs.. 8-9 yrs.. 11-14 yrs.. and 15-19 yrs.) were fairly
well matched in both populations. Illness severity. as assessed by
Shwachman ratings (see Chapter I of this paper for a discussion of
this instrument). were derived on all CF children. The sample mothers
responded to The Center for Epidemiological Studies Depression Scale.
the Parenting Sense of Competence Scale (Girbaud-Wallston. 1977). and
The Questionaire on Resources and Stress (Holroyd. 1974). They also
described. in an anecdotal fashion. two incidents of misbehavior by
the child. They then reported their response to the incident by
choosing from a series of bipolar items which evaluated strictness.

appropriateness. and effectiveness of their discipline.

48

In analyzing their data. Walker et al. (1987) found that mothers
of preschoolers and early adolescents with CF were significantly more
depressed than mothers of healthy children in those age groups
(p<0.01). Mothers of children with CF did not perceive themselves to
be under significantly more stress than mothers of healthy children in
the areas of child dependency and management difficulty. limits on
family opportunity. family disharmony and financial stress. In the
early adolescent age group. mothers of CF children showed a slight
tendency to feel more burdened in their caretaking role than mothers
of healthy children (p<0.01).

Overall. mothers of healthy and CF children did not differ in
perceptions of their parenting competencies. However. a significant
interaction effect for child health status by age group (p<0.05)
indicated that in the middle childhood years. mothers of children with
CF rated themselves as significantly more competent than did mothers
of healthy children in the same age group. Analysis of mothers'
responses to child misbehavior were rated as equally strict.
appropriate. and effective by both groups. There was no significant
effect of child age on the discipline ratings for either group.

No information was supplied about reliability and validity of
instruments used in the Walker et al. (1987) study. Randomization was
not used. so it is not known if responses are truly representative of
CF mothers. The stratification into four age groups meant that there

were only eight children in each group. a rather small number from

49

which to draw generalizations. The study results do reflect the
probability that there are some funtions of age of CF children which
influence maternal functioning. related to normative changes of
childhood development. This study is important. too. because it
supports the idea that families of children with CF are capable of
potential adaptation. rather than being overwhelmingly dysfunctional.

The final work to be evaluated in this section is that of Gibson
(1988). Gibson's study was one of very few in the topic area which
were found in the nursing literature. Using Lazarus' and Folkman's
theory on stress and coping as a framework. Gibson sought to find out
what coping behaviors parents used in dealing with the stressors
associated with raising a child with CF. Information was obtained by
having parents complete a series of open-ended and closed-ended
questionnaires as they waited at the clinic for their scheduled CF
child visit.

After data were obtained. coping responses were divided into the
three main categories of social support. problem-solving skills. and a
system of beliefs. Social support was the resource identified as most
helpful by the majority of parents. Unfortunately. the nature of the
social support was not identified in this study. Family was
identified as the most important provider of social support. Two
other important support systems which were identified by parents were
the CF clinic staff. and CF parents support group. Problem-solving

skills which were identified as helpful were those that allowed

50

parents to focus on the positive aspects of their situation. Parents
tried to identify positive attributes of both the family and the CF
child. Statements. such as "There is lots of love in our family". and
"He brings us so much happiness and love" were cited as examples.

The Gibson (1988) study is fraught with methodological
inadequacies. There was no randomization of subject selection.
Filling out a questionnaire in a busy waiting room is hardly conducive
to data collection. particularly when open-ended responses were
elicited. The instrument used was not really described. and no data
were provided regarding reliability and validity. In discussing her
analysis of the data. Gibson (1988) wrote in general terms only. and
there is no indication of statistical procedures or significance
levels used. For these reasons. much caution would need to be
exercised when applying Gibson's research findings to practice.

This completes the discussion of studies related to the effects
of childhood chronic illness on the parents of these children. It is
apparent that there is a lack of work in this area. especially when
one considers the prevalance of chronic illness in children. Overall.
the four studies cited had many methodological weaknesses. Only one
of the investigators used a control group (Walker et al. 1987). so
application of findings to the population are limited. No author used
randomization to select subjects. and it is a widely known phenomenon
that individuals who choose to participate in a study may be different

from those who choose not to participate. Data collection tools and

51

statistical testing techniques were not well described in two of the
studies (Gibson. 1988; Powers et al. 1986). Data has usually been
collected from the mother only. but the findings were reported as
parental findings. making the assumption that fathers necessarily
agreed with the responses. It is clear that future researchers need
to conduct studies using designs which remedy these shortcomings if we
are to truly understand how parents deal with childhood chronic
illness.

Effects on Siblings Siblings of children with chronic illness

 

have long been considered a population at risk for maladjustment and
maladaptive behaviors. Indeed. much of the early work done in this
area appeared to bear out these findings (Binger. Ablin. Feuerstein.
Kusher. Zoger. and Mikkelsen. 1969; Crain. Sussman. and Weil. 1966;
Turk. 1964; Wold and Townes. 1969). Most of the early studies on
siblings were performed without benefit of comparison groups. This.
coupled with the fact that. for many chronic illnesses. life
expectancy has been prolonged in the last few years owing to new
advances in treatment. shows the need to look at more recent work in
an attempt to determine how siblings fare with childhood chronic
illness.

In reviewing literature published within the last ten years
related to the effects of childhood chronic illness on siblings. few
research articles were found. By contrast. several articles were

found that discussed application of the little research that was

52

found. This is somewhat surprising in view of the trend in health
care to consider not only the sick child. but also the whole family.
in planning interventions designed to facilitate adaptation to
childhood chronic illness.

The first study to be considered is one which was conducted by
Lavigne and Ryan (1979). who were interested in determining the
psychological adjustment of siblings of children with chronic illness
or handicaps. Data were collected on 203 children who were either
siblings of ill children (n=157) or siblings of well children (control
group; n=46). These authors sought to expand the existing data base
by broadening the number of disease or handicap groups whose effects
on siblings have been studied. Sick children fell into three major
categories of hematological conditions. cardiac problems. and
conditions requiring plastic surgery. Children in the first two
groups are generally considered to have chronic conditions which
impair functional capacity. but their impairment is not highly
visible. The hematology group. however. was made up primarily of
patients with leukemia and solid tumors. illnesses which are more
likely to be fatal within a limited time than cardiac conditions. The
children who required plastic surgery to correct their defects have a
highly visible problem. which was thought to have a more negative
social stimulus (Lavigne and Ryan. 1979). Children in all groups
ranged in age from three to thirteen years. and an attempt was made to

match ages of the control and study groups.

53

All data in this study were obtained from parents; there was no
sibling participation. The Louisville Behavior Checklist (LBCL).
which is a standardized. 164-item questionnaire. was used to collect
information on parental perceptions of their well childrens'
psychological adjustment. There was no indication of the reliability
or validity of the LBCL. other than the statement that it is
standardized. Parents of ill children were approached in the waiting
room as they waited for their child's clinic visit and asked to
participate in the study. Parents of healthy. control children were
contacted by mail and asked to rate siblings of a child who was a
pupil at school (and who was named on the form). using the same LBCL.

After analyzing their data. Lavigne and Ryan concluded that.
considered collectively. siblings of children with chronic illnesses
do seem more likely to experience adjustment or behavioral problems
than siblings of healthy children. and they do appear to be at risk
for certain problems at certain ages. Siblings of all three illness
groups were significantly more withdrawn and irritable than siblings
of well children. There was a significant trend toward greater
pathology in male siblings compared to female. No main effect of
birth order on psychologic adjustment was demonstrated. Instead. this
study found significant interaction effect of birth order and sex on
psychologic adjustment: among siblings younger than the disabled
child. female siblings were worse off than male. whereas the reverse

was true in older siblings. Finally. Lavigne and Ryan found no

54

evidence that severity of disability. presumably an important
determinant of the time parents spend caring for the disabled child.
has a relationship with siblings' psychologic problems. All findings
reported were significant at the 0.05 level. with many findings
exceeding this level.

There are important limitations to the Lavigne-Ryan study. As in
criticism of an earlier study in this paper. collecting data from
parents as they await a clinic visit is not optimum. The LBCL is
lengthy (164-item). and takes considerable time to complete. The two
different methods of data collection (mail versus direct contact) may
have influenced the study outcome. Finally. data collection allowed
for no sibling input. and relied entirely upon parental perceptions of
their adjustment to the chronic illness in a brother or sister.

The second study of sibling response to childhood chronic illness
was conducted by Breslau. Weitzman. and Messenger (1981). This was a
comprehensive study of healthy siblings of 239 children with a variety
of chronic illnesses who received care at two major tertiary medical
centers in Cleveland. Findings were compared with those of a control
group of children. Data collection tools were the Psychiatric
Screening Inventory. the Level of Disability Scale. and Perceived
Effect on Siblings Scale. Reliability for these data collection tools
was given as .57. .88. and .75 respectively. To collect the data.

mothers were interviewed in their homes for two to three hours with a

55

structured questionnaire. portions of which were self-administered
during the interview.

The findings of the Breslau et al. (1981) study were computed at
a significance level of 0.01 or better. and are summarized as follows:
(1) Siblings of disabled children did not manifest higher rates of
severe psychological impairment or greater overall symptomatology when
compared to control subjects. (2) Siblings of disabled children
scored significantly higher on measures of interpersonal aggression
with peers and within the school setting. (3) The type and severity
of disability bore no relationship to the psychologic functioning of
the siblings. (4) Sex and age were not related to psychologic
functioning nor was birth order. However. birth order was found to
have a statistically significant interactive effect with sex. Among
siblings younger than the disabled children. male siblings had greater
impairment than female siblings. and the reverse was true for siblings
older than the disabled children. This latter finding is the opposite
of that reported by Lavigne and Ryan (1979). Overall. however. on
the total inventory. siblings of chronically ill children were more
similar to the control group than they were different. lending further
credence to the idea that families are generally able to cope with the
stressors imposed when a child has a chronic illness.

The third and last research related to sibling response to
childhood chronic illness was conducted by Sourkes (1987). This paper

is considered qualitative research because it examines the experience

56

of siblings who live with a child with a life-threatening illness. and
the adaptive means they mobilize to negotiate this unique life stress.
From her work as a psychotherapist. Sourkes presents case vignettes
which illustrate themes she sees as related to siblings. The areas
that Sourkes explores are causation of illness. visibility of the
illness and the treatment process. identificatin of the illness. guilt
and shame. sibling relationships with parents. academic and social
functioning. and somatic reactions. Sourkes concludes that siblings
often hold two views about the cause of the patient's illness. One
view stems from the medical information which they have heard from
their parents and the doctors. The other is their own "private"
version. often unarticulated. but to which they cling with tenacity.
even though it may be fraught with emotional and cognitive confusion.

The visibility of the disease/treatment is important to siblings.
The siblings' task is to coordinate the concepts of constancy and
change. They must learn that it is the same person who looks so
different. or that despite constancy in appearance. inner change is
making the child ill.

The fear of contracting the illness runs high in siblings.
because they see so many similarities among themselves and the
patient. This is especially relevant when the siblings cannot
stipulate a true cause for the illness. Guilt and shame. either for
having escaped the illness. or arising from the misconception that

they somehow caused the disease to occur in their brother or sister.

57

are common feelings among siblings. Guilt can also be stirred up from
another source: their sense of shame at having a child in the family
who is "different". either in appearance or in functional capacity.

A pervasive complaint of siblings which was reported by Sourkes
(1987) was the diminished attention from their parents. especially
during periods of hospitalization of the sick child. When the patient
was home. the siblings' complaints shifted from that of "too little
attention" to "preferential treatment of the patient". It is
important for siblings to be able to express these feelings. and for
the parents to respond.

The siblings' concern with the patient's illness were seen to
often affect two areas of daily functioning: school and peer
relationships. Children reported being unable to concentrate in
school. and peer relationships were often curtailed for a variety of
reasons. Some children turned their focus to achieving in school. in
order to assure a sense of competence in the face of stress and
helplessness.

Finally. Sourkes (1987) reported an increase in somatic
reactions in the siblings she studied. Weight loss or gain. enuresis.
accident proneness. and physical symptoms (Sourkes did not specify
which physical symptoms were reported) were seen to be the result of
living with a child with a life-threatening illness. According to the

author. helping siblings to understand the psychological meaning

58

behind the somatic concerns may relieve them of the necessity for
psychosomatic expression.

Sourkes' data are useful in that they illustrated concepts which
other authors have discussed when studying sibling response to
childhood chronic illness. But exactly how significant these concerns
are in the whole sibling population is impossible to assess from her
work. As a psychotherapist. Sourkes was dealing with children who may
already have been identified as having adjustment problems. The sick
children in her study all had leukemia. which often has a different
course than CF and other chronic illnesses. Areas requiring further
study using rigorous research techniques. are suggested by Sourkes.
however. and her work is important in that respect.

This concludes research literature related to the effects of
childhood chronic illness on siblings. Studies in this area are very
sparse indeed. The Breslau et al. (1981) work was the most
comprehensive (n=239). and the most methodologically sound. including
a control group. But their study did not elicit any data from the
siblings themselves. a rather curious phenomenon when sibling
adjustment was the focus of their investigation. Because the
conceptual model proposed in this paper is based on family systems
theory. it is important that responses of all family members be
included.

Impact on the sick children In reviewing the literature related

to the impact of childhood chronic illness on the ill children

59

themselves. more research was found than in the previous focus areas
of this chapter. Although the emphasis in this section will be on
literature published within the last ten years. a classic study.
conducted in 1970 (Tropauer. Franz. and Dilgard) will be presented
first because their method of data collection allowed for the
expression on any and all concerns about CF by sick children and their
mothers. This provided future researchers with a wealth of information
about areas of children's adjustment and adaptation to chronic illness
which needed further investigation.

The purpose of the Tropauer et al (1970) study was to describe
attitudes. feelings. and reactions experienced by a representative
group of children with CF and their families. Twenty children with CF
and their mothers were selected for the study on the basis of their
availability for psychiatric and psychological examination. There was
no randomization. and data regarding "family response" were collected
from mothers only. Children ranged in age from five to twenty years.
Mothers were questioned about their child's personal and social
adjustment. reactions to the medical routine. and apparent anxieties.
Their own feelings. worries. thoughts about prognosis. and major
frustrations were discussed. Reactions of siblings were explored. in
addition to marital adjustment. family closeness and the ability to
communicate about the illness.

‘ Children were asked about their experiences in relation to the

illness. Their understanding of the nature and prognosis of CF. their

60

hopes and expectations. and predominant fears in relation to the
disease were explored. In addition. children were administered a
modified form of the House-Tree-Person tool. a commonly used source of
information about the possibility of psychological conflict. Children
are asked to draw 1) a picture of a house. 2) a picture of a tree. 3)
a picture of a person. and 4) a picture of a person of the opposite
sex. Data were not provided about the reliability and validity of the
House-Tree-Person tool.

Findings of the Tropauer et al (1970) study are reported in a
primarily descriptive. anecdotal manner. without specific statistical
analysis. so it is not possible to ascertain the exact impact of CF on
the children. The authors do come to the following conclusions.
however. First. the experience of CF has considerable emotional
impact on the child and his family. The absence of obvious signs or
complaints of emotional distress concurrent with organic disease does
not exclude the possibility that such distress exists. Secondly. an
intellectual understanding of the disease achieved through educational
efforts does not necessarily eliminate psychological complications.
but efforts to educate the child helps produce a relationship which
may prove beneficial during later emotional crises. Third. the less
communicative and less emotionally supportive members of the family
are with each other. the more likely that difficulties in adjustment
to the illness will arise. Fourth. parents who are under stress

themselves are sometimes capable of intensifying the child's

61

difficulties or remaining unaware of his problems in adjustment. This
finding points out the need to include responses of the children.
rather than just those of the parent(s). Finally. the primary
anxieties and conflicts related to cystic fibrosis vary according to
age. Adolescence was noted to be a particulary trying time because
the treatment necessary for the disease enforces a dependancy upon
children at a time when independence is a primary concern.

The Tropauer et al (1970) study is important because it was one
of the few found which included responses elicited from children
themselves. There were methodological weaknesses. however. such as
lack of randomization. lack of a control group. and incomplete
reporting of statistical analysis. if any. was done by the researchers.

Drotar. Doershuk. Stern. Boat. Boyer. and Matthews (1981)
compared the adjustment of children with CF (n=9l) as rated by parents
and teachers to that of physically healthy siblings (n=71). other
physically healthy children (n=6l). and other chronically ill children
(n=47). Questionnaires were mailed to parents of all children with
CF. aged three to thirteen years. who received care at a large medical
center. and parents of the remaining three groups of children. No
information was given as to how these latter groups of children were
selected. Parents who chose to participate completed the Louisville
Behavior Checklist (LBCL) which lists 120 statements of 120 deviant
behaviors to be scored by the parent. The LBCL has been standardized

on a large population of children in the United States. and

62

discriminates children whose symptoms warrant psychiatric referral
from normally functioning children. Teachers of these same children
filled out the School Behavior Checklist (SBCL). which includes 96
statements of deviant behaviors. The SBCL has also been standardized
on a large population of U.S. children.

In computing statistical analysis of their data. Drotar et al
(1981) chose a conservative significance level of 0.01. They
concluded that children with CF achieve an age—adequate level of
adjustment at home and school. Adjustment was largely unrelated to
severity of illness. As a group. children with chronic illness had
slightly less adequate adjustment as rated by parents. Severe
adjustment problems. however. were rarely reported.

The Drotar et al. (1981) study used data collection tools that
were reliable and valid. They utilized a control group. and the
number of children studied was sufficiently large. As a limitation.
these authors did not elicit responses from the children themselves.
instead relying upon the perceptions of parents and teachers to be
accurate.

Lewis and Khaw (1982) examined family functioning as a mediating
variable affecting adjustment in children with CF. Three groups of
children with CF (n=31). asthma (n=26). and a healthy control group
(n=27) were randomly selected from a large childrens' medical center
in Boston and a school system in the same area (healthy children).

The three groups were matched for age (seven to twelve years). and

63

gender. The tests administered were the Family Adaptability and
Cohesiveness Evaluation (FACES). Behavior Problem Checklist (BPL). and
the Piers-Harris Children's Self-Concept Scale. Reliability and
validity had not yet been reported for FACES. The BPL and Piers-
Harris tools had reported test-retest reliabililty of 0.82 and 0.72
respectively. FACES and BPL were completed by parents. and the Piers-
Harris tool was completed by the children themselves.

Among the three groups of children. Lewis and Khaw (1982) found
no significant difference in family functioning or children's self-
concept. The two groups of chronically ill children did have
significantly higher frequencies of behavior problems than the healthy
children (p<0.01). But when there was statistical control for effects
related to family functioning in the areas of cohesion and
adaptability. this difference was not statistically significant.

These authors concluded that children with chronic illness adjust in
basically healthy ways and that any deficits result more from
mediating factors. such as family functioning. than from the presence
of the disease per se.

The Lewis and Khaw (1982) study is one of the most
methodologically sound found by this author in the review of relevant
literature. Subjects were randomly selected. data collection was
consistent across groups. and groups were controlled for age. an
important factor when studying a disease such as CF which is

progressively deteriorating in nature. Their data were subject to

64

rigorous statistical analysis. Probably the major limitation of the
Lewis and Khaw (1982) study was that there was not any control for
socio-economic status. a factor which could contaminate their
findings.

Stein and Jessop (1984) assessed the relationship between the
health status of 219 children with chronic illness and their
psychological adjustment. Measurement of psychological adjustment was
accomplished using the Personal Adjustment and Role Skills Scale
(PARS) which contains subscales on six dimensions described in the
literature as being associated with patterns of maladjustment ih
children. Reliablity of the PARS was reportedly 0.82. The form was
completed by a parent. The second variable. health status. was
measured using the criteria of days in bed or absent from school in
the last two weeks. and days and numbers of hospitalizations in the
last six months. Additionally. functional status was assesed by
evaluating the child's capacity to perform age-appropriate roles and
tasks.

In analyzing their data. Stein and Jessop (1984) correlated each
measurement of health status. i.e. days absent from school in the last
two weeks. or number of hospitalizations in the last six months. with
the chid's PARS score. Their data provided evidence that. in general.
adjustment among chronically ill children is relatively independent of
degree of illness. as measured in this study. Both functional status

and days absent from school are associated with poor psychological

65

adjustment (p<0.01). Which is cause and which is effect is unclear.
In the sample. family composition altered the correlation between each
of the morbidity measures and psychological adjustment. The
association was strongest when the mother and child were living with
an adult other than the child's father (in most cases. a grandmother
or other female relative). It is not known if this finding is related
to lack of a male figure in the child's life or not. The association
between health status and psychological adjustment was weakest when
both parents were living together with the child. The situation when
the mother is alone with the child is an intermediate one varying with
sickness measures. These findings suggest that the relationship
between morbidity status and psychological adjustment is less for
children living with both parents than for those living with a mother
and another female adult.

The sample used in the Stein-Jessop study was predominantly poor.
and was drawn from a minority population. Thus. the findings are not
generalizable to the general population without further replication
studies. The authors concede that their findings do not shed light on
the issue of cause and effect in the relationship betwen psychological
adjustment and health status. A cause and effect relationship can
only be determined through longitudinal studies that provide more
careful control of variables.

The final study on the effects of chronic illness on children to

be discussed is one completed by Simmons. Corey. Cowen. Keenan.

66

Robertson. and Levison. 1987). The primary question to be answered in
their work was how well latency-age children (six to eleven years)
cope with CF. as reflected by their behavior. The population of the
Simmons et al. study included all families seen in a major CF clinic
whose CF child was latency age and who agreed to participate. The
number of participating families was 56 families of male children and
52 families of female children with CF (total n=108). Packets of
questionnaires were distributed to participating families at the time
of a regular clinic visit. with instructions to complete them at home
and return them by mail. Four data collection tools were used in the
Simmons et al. study: the Piers-Harris Children's Self-Concept Scale.
the Children's Health Locus of Control (CHCL). the Child Behavior
Checklist (CBCL). and the Family Assessment Measure (FAM). All four
measures are self-report tools. with the first two being completed by
latency age CF children and siblings. and the latter two being
completed by their parents. Additionally. physical parameters for the
children with CF were derived from clinic charts. and they included
pulmonary function status. height and and weight. and amount of
hospitalization during the last three years.

In analyzing their data. Simmons et al. first looked at
demographic and health status data of non-participants and determined
there was no statistical difference between the groups. This was
necessary to rule out possible contamination effects if families who

agreed to participate were found to be different from those who

67

refused. Next. correlation coefficients for all psychosocial and
physical variables were calculated. followed by a students' t-test to
determine the statistical significance of correlations and differences
in the group means.

The CF children had a higher rate of behavioral adjustment
problems than the general population (23% vs 12%). This prevalence of
behaviors was not related to disease severity. however. Behavioral
problems identified were largely of a somatizing nature. rather than
conduct disturbances. Somatic complaints were more common in CF males
than females (48% vs 25%). but were not related to severity of
illness. The authors suggest that the tendancy toward internalizing
behaviors. as manifested in somatic complaints. show that these
children with a potentially fatal disorder do worry about the disease
and its effects. even though they do not act out on it.

Although behavior scores indicate some pathology. other
psychosocial scores showed strengths in both the CF children and their
non-CF siblings. The self-concept scores are increased in all groups
and are significantly higher than the published norms for the Piers-
Harris scale (p<0.01). On the Children's Health Locus of Control. CF
children have elevated scores. showing that they perceive themselves
to have greater control over their own health compared to the
published norms for healthy children (Healthy siblings did not
complete the CHLC). Overall. the children in the Simmons et al.

(1987) study showed that they are able to function adequately. but

68

they do show the effects of the stress of chronic illness by showing
more behavior disorders. particularly of a somatizing nature. and
especially among males.

The Simmons et al. study is cross-sectional. so is not able to
show the effects of CF on latency age children over time. or with
exacerbations of the disease. Other than that. their study design was
fairly sound. Data were elicited from both children and parents. and
the data collection tools have long been established to have good
reliability and validity. Statistical analysis was stringent. The
findings of the Simmons et a1. (1987) are useful because they concur
with those of Steinhausen and Schindler (1981) who reported similar
behavior disturbances in children and adolescents with CF.

Summary of Childhood Chronic Illness Literature

 

This completes the review of research literature related to the
impact that chronic illness has on children. The major limitation of
this body of research is that no studies were found which were
longitudinal in nature. Thus. the effects which occur over time. and
especially during an exacerbation of the illness. are not assessed.
Randomization of subjects was used in only one study (Lewis and Khaw.
1982). Three researchers used control groups (Drotar et al.. 1981;
Lewis and Khaw. 1982: Simmons et al.. 1987). Only two studies
included responses from the children themselves (Lewis and Khaw. 1982;
Simmons et al.. 1987). Further studies must be designed which address

these limitations. in order to truly assess the impact of chronic

69

illness on school age children. and the relationship of life stressors
to health status.

The following section of this paper will contain a review and
critique of literature pertinent to the relationship between stress
and health. Research articles will be presented. with an analysis of
their methodology and application potential.

Stress and Illness

 

It has long been postulated that stimuli (e.g. life events)
associated with emotinal arousal cause changes in physiological
processes (Cannon. 1929). In both retrospective and prospective
investigations. modest but statistically significant relationships
have been found between mounting life change and the occurrence of
such incidents as sudden cardiac death. myocardial infarction.
accidents. athletic injuries. leukemia. several immune-related
disorders. diabetes. and streptococcal infection (Bramwell. Masuda.
Wagner. and Holmes. 1975; Kobasa. Maddi. and Kahn. 1982; Locke. 1982;
Murphy and Brown. 1980; Rahe. 1972; Rahe. Bennett. and Romo. 1972).

Over the years. various life event measures have evolved into
widely accepted instruments used in the investigation of the
relationship between life stress and physical illness. The most
common measure was developed in 1967 by Holmes and Rahe. Their Social
Readjustment Rating Scale (SRRS) is a list of 43 events deemed to
require substantial change. Individuals recall whether these events

happened to them in the last six months. Items are weighted. and

70

after completion of the checklist. a cumulative score is obtained.
The score is then used to explain negative changes in one's health
status.

Holmes and Rahe's Social Readjustment Rating Scale (SRRS) has
received extensive criticism of its assumptions (Kaplan. 1979;
Mechanic. 1974). and scale construction (Rabkin and Struening. 1976).
Because it is subject to recall of past events. there is the chance of
forgetting events. or having their perceptual significance blunted.
The SRRS taps discrete changes. and does not measure ongoing stressful
conditions. Reports of reliability and validity are very
inconsistent. Despite this criticism.the SRRS continues to be a
dominant data collection tool in the area of behavioral medicine
(Kanner. Coyne. Schaefer. and Lazarus. 1980).

In contrast to the major life events stance taken by Holmes and
Rahe (1967). Lazarus and his colleagues have proposed the immense
adaptational significance of the relatively minor stressors that
characterize everyday life (Kanner et al. 1980). These relatively
minor stressors are labeled "hassles" and are defined as the
irritating. frustrating. distressing demands that to some degree
characterize everyday transactions with the environment. Because
hassles are chronic. and may build up over time. these authors have
proposed that assessing hassles would be a better indicator of health
outcome than major life events are. Pursuing this proposition. Kanner

et al. developed a scale which focused on relatively minor events.

71

namely. the hassles and uplifts of daily life. The Hassles Scale
consists of a list of 117 hassles that was generated from the areas of
work. health. family. friends. the environment. practical
considerations. and chance occurrences as guidelines (Kanner et al.
1980). The Uplifts Scale. drawn from the same areas as hassles.
consists of 135 uplifts. Respondents were asked to indicate which of
the hassles and uplifts occurred to them in the last month. how
frequently they happened. and what their intensity was (1 to 3).
Additionally. respondents completed a major life events questionnaire
at the beginning of. and ten months into. the study period to
determine which of these major events had occurred. Psychological
well-being was measured using the Hopkins Symptom Checklist and the
Blackburn Morale Scale. The study lasted for 10 months. after which
data were analyzed to determine if hassles and uplifts scores
correctly predicted psychological well-being.

Kanner et al. (1980) found that hassles are more strongly
associated with adaptational outcomes than are life events. Further.
hassles contribute to symptoms independent of major life events.
Regarding uplifts. Kanner et al. found that for women only. uplifts
are positively related to life events. Although this study only began
the task of studying hassles and their possible relationship to
health. it was the first systematic attempt to determine if such a

relationship existed.

72

The relative effectiveness of hassles and uplifts and of major
life events in predicting concurrent and subsequent somatic symptoms
was examined in a longitudinal study conducted by DeLongis. Coyne.
Dakof. Folkman. and Lazarus (1982). One hundred subjects. ranging in
age from 45 to 64 years. completed the hassles and uplifts scale.
developed by these authors. once each month for nine consecutive
months. Hassles and uplifts were rated for both frequency and
intensity (1 to 3). One month prior to the start of the study. these
same subjects completed a major life events scale. including events
that had occurred during the previous 2 1/2 years. A self-report of
health status. including indexes of overall health. a somatic symptoms
score. and an energy level score was completed both at the start and
completion of the study.

DeLongis et al (1982) computed correlations between hassles.
uplifts. life events. and the health questionnaire. High levels of
hassles were associated with both initial health status (r= -.21) and
final health status (r= -.33). as well as with initial (r= .27) and
final (r= .35) somatic symptomatology. Hassles were found to be more
strongly related to somatic health than were major life events. and
uplifts did not contribute to the variance in health outcomes.

A major limitation to the DeLongis et al. (1982) study is the
reliance on memory for accurate reporting of life events. The 2 1/2
year time of recall may mean that data collected was not truly

accurate. As events fade into the distant past. they may be perceived

73

as being less important than those experienced more recently. A
second limitation occurs because it is not known if self-report of
symptoms is an accurate indicator of health. More research needs to
be conducted to determine whether this is a valid means of health
measurement.

In attempting to shed additional light on the proposed
relationship of hassles and uplifts to health. Monroe (1982) studied
73 volunteer employees from a moderate sized corporation.
Participants completed the Psychiatric Epidemiology Research Interview
Life Events Scale to identify life events they experienced during the
previous twelve months.the General Health Questionnaire to assess
psychological symptoms. and an untested scale measuring uplifts and
hassles. The study lasted four months. with subjects completing the
General Health Questionnaire. and hassles and uplifts scales on a
monthly basis. In compiling his data. Monroe computed means for
hassles frequencies. uplifts frequencies. and the psychological test
scores.

Two major findings emerged from Monroe's (1982) study. First.
daily hassles are a significant predictor of psychological symptoms.‘
and. secondly. daily hassles appear to be better predictors of
psychological symptoms than life events. No significant correlations
were found between uplifts frequency and major life event categories.
All findings were reported at the 0.01 significance level. Monroe's

findings confirm those of Kanner et al. (1980).

74

Further studies of the relationship of hassles and health were
conducted by Burks and Martin (1985) and Jandorf. Deblinger. Neale.
and Stone (1987). Although the methodology differed. both studies
were concerned with the idea that ongoing stress was more important
than discrete major life events in predicting changes in health
status. Data collection was similar to that described in the previous
research in this section (e.g. self-report). The results of both
studies support earlier findings that undesirable daily events have
more predictive power than major life events in predicting health.

Despite the criticisms that have been voiced about the use of
various forms of major life events scales. more studies relating major
events to physical symptomatology were found in the recent literature
than those relating daily. on-going stressors to the same variable of
health. Because of their preponderance in the literature. several of
these studies will be cited briefly at this time.

Sarason. Sarason. Potter. and Antoni (1985) assessed the effects
of both social support and life events on illness. Their subjects
were 163 men enrolled in the Basic Enlisted Submarine School. Life
changes during the past year were evaluated for incidence and
severity. using the Life Experiences survey. a modification of the
Holmes and Rahe (1967) life event rating scale. A self-report health
questionnaire elicited data about the occurrance of symptoms in the

last year (e.g. ringing in ears. nausea. rashes). Illnesses were also

75

tabulated. using school medical records. No data were supplied about
the reliability or validity of the data collection tools.

Correlations among the variables of life events. social support.
and health status were conducted. Findings support the idea that
negative. but not positive. life changes are associated with illness
report. Of particular interest is the fact that negative events
occurring during the preceeding 7-12 months were not correlated with
medically diagnosable illnesses during that period. but were instead
correlated with illnesses in the succeeding time period. This finding
is consistent with growing evidence associating time lags between
stressors with various types of illness manifestation.

Several limitations are noted in the Sarason et al. (1985) study.
No data were supplied regarding reliabililty and validity of the data
collection tools. Subjects were asked to report fairly mild symptoms
that occurred in the past year. Accurate recall of the incidence and
accurate timing of these minor symptoms seems fairly unrealistic.
Randomization was not a concern because the entire student population
at the submarine school participated. but this means the research
findings are applicable only to other submarine school students.

In a study reported in the nursing literature. Yarcheski and
Mahon (1986) investigated the relationship between perceived stress
and symptom patterns in 136 seventh and eighth grade children.
Fifty-two percent of the subjects were female and 48% were males.

Participation was not randomly assigned. The researchers visited the

76

seventh and eighth grades in the target school. and explained the
purpose and procedures of the study to the students. Both student and
parental consent were obtained for study participation. The study
students completed. while at school. the Modified Adolescent Life
Change Events Questionnaire. The Jalowiec Coping Scale. the PRO-Part
2. which measures perceived social support. and the Symptom Pattern
Scale to measure psychological. physical. and psychosomatic
manifestations of psychological distress. The symptom patterns are
experienced as psychological inertia. free-floating anxiety. physical
bodily complaints. and somatization of distress. Yarcheski and'Mahon
(1968) were careful to establish reliability for the data collection
tools they used in this study. In order. the tools had reliabilities
of .75. .80. .86. and .77.

In the Yarcheski and Mahon (1986) study. the relationship between
perceived stress and symptom patterns was upheld (p=0.02). Affective
oriented coping was also positively associated with symptom patterns
(p=0.007). For example. the more that these children used coping
strategies such as day-dreaming. crying. and worrying. the more they
experienced manifestations of distress. Yarcheski and Mahon suggest
that health care providers should discourage young adolescents from
using emotion-focused coping strategies. teaching them instead to use
concrete coping methods.

Perceived stress was strongly and positively related to symptom

patterns under the condition of low social support (.55). Conversely

77

when social support was perceived to be high. the relationship between
perceived stress and symptom patterns decreased and was not
statistically significant (.33). The implications of this finding are
that health care providers need to identify the diverse sources of
support for adolescents in an attempt to improve adolescent well-
being.

The Yarcheski and Mahon (1986) study was fairly well designed.
Selection of subjects was not randomized. but randomizing from the
already small population would have shrunk the size of the subject
cohort. Data collection tools were described. and data were provided
for their reliability. Stringent statistical analysis was applied.
and the findings were reported in detail. From a nursing perspective.
the Yarcheski and Mahon (1986) study was significant because the
authors discussed implication for nursing practice thoroughly.

Smith. Gad. and O'Grady studied 26 children with CF aged twelve
to eighteen years of age to determine if there was a relationship
among psychosocial functioning. life change. and clinical status in
adolescents with cystic fibrosis. Self-esteem. perceived social
support. and locus of control were all measured. using self-report
measures. Additionally. a measure of life change for adolescents was
administered. with subjects indicating which of 46 selected life
events he or she had experienced within the past year. Items on the
measure are very similar to those found on the original Holmes and

Rahe (1967) measure of life events. Data were also collected from a

78

normative adolescent population (n=97) on the number of life events
experienced in the last year. No other data were collected from these
healthy adolescents. The variables of self-esteem. perceived social
support. locus of control and life events were correlated with health
status in CF. which was determined by using both pulmonary and general
measures (no further information was given). and with each other.

Smith et al. found no significant difference in the number of
life events experienced by CF and normal adolescents. However.
"sicker" CF adolescents reported significantly more negative events in
the past year than the "healthier" CF adolescents. If this is so. the
less sick adolescents with CF reported fewer negative events in the
past year than the healthy children. This finding is curious. and
requires more investigation by researchers interested in finding out
how adolescents cope with the stressors of CF. There was no
significant difference between groups in the number of positive events
which were reported.

CF subjects had a lower self-esteem (30th %ile) than normal
adolescents. but were above average on general adjustment (90th %ile).
suggesting satisfactory adaptation to the illness. Locus of control
scores showed a relatively external orientation. with the CF
adolescents perceiving themselves as being less capable of exerting
control over environmental events.

The majority of the CF adolescents were functioning at the

appropriate grade level for age and over 80% expressed an active

79

interest in planning for the future. These results in general support
those of others who have found that most adolescents with CF appear to
proceed through adolescent development in a functional manner.

The findings reported by Smith et a1 (1983) must be evaluated
cautiously. A major concern is the small number of subjects (n=26).
Another problem is the authors' use of recall of life events of the
distant past (one year). Finally, data regarding statistical soundness
of the data collection tools has not been supplied. and this limits
the assumptions one may make about study results.

In the Western Journal of Nursing Research. Van Os. Clark.
Turner. and Herbst (1985) reported on their study testing the
relationships between stressful life experiences of the primary
caretaker and various measures of the severity of the CF child's
illness. One hundred one families who received care for their CF
child at a large CF center participated in the study. Most CF
children were in the preschool or elementary age groups. After
agreeing to participate. the primary caregivers of these children
filled out a demographic questionnaire. the SRRS (Holmes and Rahe.
1967) to measure life events. and the Cystic Fibrosis Child Health
Summary. which is a brief questionnaire designed to ascertain
information regarding recent hospitalizations and antibiotic therapy.
In completing the SRRS. caregivers reported incidence of events only.
and not their perceived severity. Swachman scores were determined for

each CF child by the director of the center. The Swachman score

80

provides an index of the severity of CF based on an assessment of
activity level. physical status. nutritional status. and chest X-rays.
Using Pearson product-moment correlations. Van Os et al. (1985)
found that life events scores were reliably associated with current
antibiotic therapy in the CF children they studied (r=.212, p=<0.025).
The authors never stated so. but it is assumed that they associated
antibiotic therapy with an exacerbation of the child's condition.
This needs to be clarified for the reader. because it is not uncommon
for children with CF to receive antibiotics on a prophylactic basis.
not related to their present condition (Whaley and Wong. 1989).
Further analysis showed that four life events were correlated with
17.9% of the variability of current antibiotic therapy. In declining
order of importance. these events are marital separation. vacation. a
loan of less than $10,000. and divorce. Three additional life events
accounted for 12.7% of the variability of the ratings of chest X-rays
(part of the Swachman rating). The three events are a child leaving
home. gaining a new family member. and a change in work
responsibilities. Van Os et al. (1985) note that of the seven life
events named. four are changes in family membership. and the remaining
three may represent financial stress. They suggest that it would be
prudent for nurses to pay particular attention to the occurrence of
these life events in CF families. because of their potential for

adversely affecting the health of the children.

81

Several limitations are seen in the Van Os et al.(1985) study.
The sample was not controlled for age. and results were not
stratified. so it is unknown if all age children respond according to
the data results. The life events score was based on recall of the
past. and the shortcomings of this sort of data collection have been
discussed earlier in this section. Longitudinal studies would be more
accurate. There was no control for time of diagnosis. Obviously.
analysis of data would be different when a child was just diagnosed
than if the diagnosis had been made a year or more ago. allowing the
caregiver time to adjust.

The final research on the impact of life events on the health of
chronically ill children which will be reported here is that of
Patterson and McCubbin (1983). These researchers thought that the
impact of a single stressor on a family could best be understood if
other life changes being experienced simultaneously were taken into
account. Their hypothesis was that a pile-up of life changes in a
family in a six month period is associated with changes in the health
status of a chronically ill member.

To assess pile-up. Patterson and McCubbin (1983) developed the
FILE (Family Inventory of Life Events). The selection of items to be
included was guided by those life changes appearing on other
individual life change inventories (i.e. Coddington. 1972; Dohrenwend.
Krasnoff. Askenasy. and Dohrenwend. 1978; Holmes and Rahe. 1967). In

addition. situational and developmental changes experienced by

82

families at different stages of the life cycle were included. because
of the change they require in families. Responders indicate 1)
whether the change was anticipated or not. 2) the amount of adjustment
(0 to 8) required by the family to cope with the change. and 3)
whether this adjustment continues or is completed. No data were
supplied regarding reliability and validity.

Subjects in the Patterson and McCubbin (1983) study were 100
families of one or more children with CF who received care at a major
CF clinic. All clinic families were invited to participate. so random
selection was not used. The majority (93%) of families had one child
with CF; the remainder had two CF children at home. Ages of the
children ranged from three months to twenty eight years.

Parents in participating families were sent the FILE
questionnaire. and asked to record family life events and changes
experienced by the family during each six month period of the past
year. In two-parent families. parents were asked to collaborate in
filling out the form. Indices of child health (height/weight and
pulmonary functioning) were obtained from two clinic visits
approximately three to four months apart.

Using Pearson product moment correlation. Patterson and McCubbin
(1983) found that a pile-up of life changes in a family in a six month
period is associated with changes in the health status of a
chronically ill member. Four categories of life changes plus total

life changes were analyzed. Changes related to family relationships

83

(r= —.19. p<0.05). family management and decisions (r= -.28. p=<0.01).
family and health (r= —.24. p=<0.05) . and family finances (r= —.26.
p=<0.01) were significantly correlated with overall pulmonary
functioning. No significant correlations were found between the
height/weight index of child health and family life changes.

It might be argued that life change events are actually caused by
decline in health status. rather than the other way around. Indeed.
when one studies the conceptual model which has been presented in
chapter 11 of this paper. it is evident from the feedback loop that
cause and effect are bi-directional to a certain extent. Perhaps some
of this question could be answered by designing a study that measures
health status at the onset. collects data regarding life events (FILE)
in an ongoing fashion. then re-measures health status at the mid-point
of the study. and at some time after the six month period(s) of data
collections.

There are other limitations to the Patterson and McCubbin (1985)
study. The wide age range of children (3 months to 28 years).
without stratification. makes it difficult to make application of the
findings. Data were elicited from parents only. with the assumption
that such data represented family findings. This has been a
consistent weakness in research purporting to measure family responses
to childhood chronic illness. The data collection tool was new. and

no data were supplied regarding its reliability and validity.

84

Finally. data collection for life events was conducted in a

retrospective manner. making the responses subject to error.

Summary of Stress and Illness Literature

 

This concludes the review and critique of the literature related
to the relationship between stress and illness. At this point in
time. there are two major schools of thought regarding the best way to
understand the relationship between the two concepts. Major life
events. as discrete occurrences which require varying amounts of
change. are thought by some researchers to adequately explain changes
in health. Other researchers. realizing that no family deals with
only one stressor at any given time. are more interested in studying
the additive effects of stressors. both minor annoyances (hassles) and
major happenings (crises) to explain changes in health. The latter
stance is the one taken by the author of this paper. More studies in
this area are needed. Methodological issues must be addressed.
Longitudinal data collection. inclusion of responses from all family
members. stratification of children being studies into age groups. and
better use of control groups are issues which demand attention in
future studies.

In the fourth and final chapter of this paper. King's theory for
nursing will be presented as a framework for nursing practice in
caring for families of children with cystic fibrosis. Implications

for nurses in research. education. and practice will be discussed.

CHAPTER III

CONCEPTUAL FRAMEWORK

Introduction

 

Having reviewed the literature related to the concepts of chronic
illness in children and the effects of family stressors on the health
of these children. it now becomes important to organize these concepts
into a framework. A conceptual framework provides practitioners with
a context in which they can describe. explain. and predict human
responses to states of disequilibrium. Further. this same framework
allows for the prescription of interventions to facilitate human
adaptation to disequilibrium (Chinn and Jacobs. 1983). Conceptual
frameworks. then. provide for structure and consistency in nursing
study and practice.

The Hill ABCX Family Crisis Model

The earliest conceptual foundation for research to examine the
variability of individuals' responses to stressors has been the Hill
(1949. 1958 A) ABCX model. The Hill model was used primarily to study
the variability of individual responses to separation and reunion
during war. and is depicted on the following page.

A critical idea in the ABCX model is that A (the event) is
influenced by several phenomena. Hill (1958 B) postulated that no
crisis-producing event is the same for any given family. and that its
impact may vary according to the several hardships that might
accompany it. In other words. what might be construed as a crisis-
precipitating event under one set of circumstances might be construed

as much less serious under different circumstances.

86

   
   
     
 

  

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A (the stressor event)--interacting with B (the family's crisis-
meeting resources)--interacting with C (the definition the family
makes of the event)--produces X (the crisis). The second and third
determinants--the family resources and definition of the event--lie
within the family itself and must be seen in terms of the family's
structures and values. The hardships of the event. which go to make
up the first determinant. lie outside the family. and are an attribute

of the event itself.

Figure 1 (Modified from Hill. 1958 B)

87

It is important to understand Hill's (1949) definition of crisis
at this point. Hill stated that crisis is "any sharp or decisive
change for which old patterns are inadequate" (p. 51). Patterns refer
to modalities of family functioning. and Hill's definition implies
that new patterns of functioning need to be developed if families are
to deal successfully with crises. Examples of new patterns of
functioning might include reallocation of roles of family members. or
requesting help from outside the family (McCubbin and Figley. 1983).

Obviously. Hill's ABCX model is primarily crisis oriented. and is
not helpful in explaining what happens if events are not viewed as
crisis-producing. Human experience. alone. leads one to know that
individuals are continually appraising events/non-events. the majority
of which can be handled with existing patterns of functioning.

In an attempt to explain individual and group differences in the
degree and kind of reaction produced by certain environmental demands
and pressures. Lazarus and Folkman (1984) describe a process they call
cognitive appraisal of events. Using their taxonomy. events are
appraised as l) irrelevant. 2) benign-positive. or 3) stressful.
When an encounter with the environment (event) carries no implication
for the well-being of the individual. it is placed in the category of
irrelevant. It impinges on no value. need. or commitment of the
individual. and requires no mobilization for action (p. 32).

Benign-positive appraisals of encounters occur if the outcome is

perceived as positive. That is. it preserves or enhances well-being.

88

or promises to do so (Lazarus and Folkman. 1984. p. 32). Benign-
positive appraisals are accompanied by pleasurable emotions. such as
joy. love. happiness. exhilaration. or peacefulness.

Stress appraisals include harm/loss. threat. and challenge
(Lazarus and Folkman. 1984. p. 33). In harm/loss. an individual
experiences some damage to self. such as injury or illness. damage to
self- or social-esteem. or loss of a valued person or object. Threat
concerns harms or losses which have not yet occurred. but which loom
on the horizon. Challenge has much in common with threat. in that
they both call for mobilization of efforts at dealing with potential
events. The main difference is that challenge appraisals focus on
potential for growth and gain. whereas threat appraisals center on
potential harms.

In summary. it is through cognitive appraisal that individuals
assess the meaning of events/non-events in their lives. This meaning
may be different for two persons who are faced with the same
circumstance under comparable conditions. Similarly. a given
individual may appraise an identical event/non-event differently at
various times of occurrence in his/her life. Cognitive appraisal
determines how much change the individual thinks he must make in
response to the event/non-event which is being confronted. Some
events/non-events require no change. others require minor change
(hassles). and still others. which are appraised as crises. require

major change in functioning.

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90

Adaptation of the ABCX Family Crisis Model

 

In developing a conceptual model to study the effect of family
stressors on the health of children with CF. one must take into
account the cognitive appraisal process of assigning events as crises.
or as less serious events. Further. the conceptual model must explain
what happens. once an assignment is made. Are non-crises responded to
differently than crises? Is the outcome different? How does the
outcome of any given encounter with an event influence other
encounters which are occurring simultaneously. or in the future?

The conceptual model which this author has developed to study the
effect of family stressors on the health of children with CF is
depicted in Figure 2 of this paper. It is at once evident that the
model is an adaptation of Hill's (1949. 1958 A) ABCX family crisis
model. The X (crisis) factor has been changed to explain how this
phenomenon varies. allowing for events to be appraised as crises.
hassles. or non-hassles; i.e. from requiring major changes in family
functioning to requiring little or no change at all. Responses are
shown to be a key factor in how events/non-events are appraised and
acted upon. Responses to hassles can lead to ban-adjustment or
maladjustment. and efforts to manage crises can lead to hon-adaptation
or maladaptation. Regardless of whether the outcome is positive or
negative. however. feedback from all encounters is shown in the model
to influence appraisals of. and responses to. all future encounters.

A detailed discussion of the concepts in the proposed model follows.

91

Definition of Concepts in the Model

 

Event or Non-Event The first variable to be discussed is the
event/non-event. At this early stage in the conceptual model. a

simple dictionary definition will suffice. In The American College

 

Dictionary (1982). the word event is defined as "an occurrance.
incident. or experience" (p. 454). A non-event. by contrast, would be
the lack of an occurrance. incident. or experience. These
occurrances. incidents. or experiences. or lack thereof. refer to
interactions individuals have with the environment. both internal and
external (Folkman and Lazarus. 1984). Obviously. events can vary from
small and mundane (i.e. setting out pancreatic enzymes for a CF child
each morning) to those of great significance. requiring much change
(i.e. the death of the CF child). Similarly. non-events may be
seemingly insignificant (i.e. missing a single CPT treatment) to major
(i.e. not being eligible for state assistance for CF related
hospitalizations). But because the classification of events as minor
or major has a large subjective. or perceptual component. events or
non-events at this stage in the conceptual model are largely devoid of
any inherent weighting of severity.

In the proposed conceptual model. events/non-events lead to some
change in function. Obviously. when one is driving. coming upon a
stop sign calls for bringing the vehicle to a halt. which is a change
in function. But this is an ongoing and expected part of driving. and

does not call for extra or unusual responses. In this case. stopping

92

for the stop sign is not a stressor event. Having a child run in
front of the car would also call for a stopping of the vehicle. In
the latter example. however. the stop is unexpected. and any rational
driver would appraise the event as being much more serious than the
first.

Families who include a child with CF in their membership are
continuously faced with events/non-events that they must appraise.

For example. it is common for children with CF to cough quite
profusely following their regular chest physiotherapy as they attempt
to expectorate the thick mucus that has been loosened. Because it is
expected and on-going. this coughing does not alarm the family. But
if that child's school teacher reports a dramatic increase of
productive coughing in the classroom. or if hemoptysis occurs with it.
the child's cough is appraised to be much more serious. perhaps
heralding a decline in health. and requiring changes in the families
usual mode of functioning. The child must be seen by a physician. and
hospitalization may be the outcome.

Since events/non—events call for some change. they can be viewed
in a stress framework (Selye. 1957). According to Selye. the human
body attempts to maintain homeostasis. and any upset in the steady
state of the body calls for re-adjustment. When events/non-events are
relatively minor. homeostasis is easily maintained . using a
repertoire of responses which have previously been incorporated into

ones' usual pattern of functioning. But if changes are excessive in

93

either quantity or quality. they tax the capacity for readjustment.
thereby producing stress.

In Selye's writings. events/non-events are viewed as noxious. a
concept argued by recent researchers (Dohrenwend and Dohrenwend. 1981;
Zautra. Guarnaccia. and Dohrenwend. 1986). A more current view is
that humans are seen as reactive to stimuli (stimulus-response
psychology). and stimuli (events/non-events) are commonly thought of
as events impinging upon the person. as well as conditions arising
from within the person (McCubbin and Figley. 1983).

Resources In the proposed conceptual model. events/non-events
are ultimately defined as non—hassles. hassles. and crises. It is
necessary to consider the resources that are available to meet the
demands of the event/non-event when making an assignment into any of
these categories. Burr (1973) defines resources as the family's
ability to prevent an event of change in the family social system from
creating a crisis or disruptiveness in the system. Hill (1958) very
succinctly described resources to be the adequacy-inadequacy of family
organization. McCubbin and Thompson (1987) expand on these two
definitions when they equate resources with family strengths. and call
them the "family's capabilities for resisting crisis and promoting
family adjustment" (p. 6). i

Understandably. as families grow and develop. the events/non-
events which have the most impact on their function will change in

significance. According to McCubbin and Thompson (1987). families

94

with school-age children face the hardships of intra-family strains.
work-family strains and the difficulties associated with them. The
critical family resources identified by these authors are:

"Family accord about their competency

Qualitative marital communication

Shared orientation to child rearing

Satisfaction with family life

Financial management skills

Shared couple orientation to relatives and friends

Satisfaction with quality of life" (p. 8)

The McCubbin-Thompson (1987) discussion of family strengths has
arisen primarily from a family development framework (Duvall. 1977).
which allows for anticipation of family changes due to developmental.
and thus. fairly predictable. events. But the experiences of a
family. when a school-age child has CF. are much more complex. and the
normative. developmental changes are complicated by the non-normative
changes brought about by the disease process. From this standpoint.
it is helpful to consider family systems theory (Hazzard. 1971) when
determining family strengths that will serve as resources.

From a systems perspective. a family can be viewed as a highly
interactive unit. designed to facilitate growth and development of its
members (Hazzard. 1971). A healthy family system promotes individual
autonomy among its members. while maintaining a strong sense of

emotional cohesion. Although it maintains its established power

95

structure and role relationships. the healthy family has the
flexibility to modify its rules adaptively in response to specific
situational (non-normative) or developmental (normative) stressors.
Thus. a healthy family is a dynamic system that responds to internal
and external stressors while maintaining its equilibrium.

Two major concepts emerge as salient to a discussion of family
resources from a family systems viewpoint. The first of these
concepts is boundaries. which are rules specifying who can participate
in the family. and how much input or exit of energy. information. and
matter will be allowed within the family (Miller. 1980). When a
school-age child has CF. boundaries must be permeable enough to allow
for the input of information and assistance from outside the family
system when responding to the major stressors which accompany the
disease.

The second family systems concept which influences resources is
£213. If a family has adopted a traditional outlook. where father is
breadwinner. and wife is homemaker and mother. the entry of a child
with CF into the family may call for role changes. The husband may
have to assume caregiving roles to assure that the affected child
receives required chest physiotherapy. The mother may need to work
outside the home to cover extra expenses incurred as a result of the
disease and its treatment. Even siblings may need to assume some
care-giving or home maintenance duties not previously a part of their

roles. The ability of family members to change or modify their roles

96

serves as a critical resource in dealing with events/non-events
(Miller. 1980).

No one would dispute the fact that the above stated family
strengths are valuable resources. But as described. they cite
primarily attitudes and skills. which are learned over time. If one
is to take into account a holistic view of resources. a more immediate
and concurrent view must also be undertaken (Thomas. 1987). Variables
of time. money, and energy need to be seen as impacting positively
upon the family's ability to prevent an event/non-event from creating
a crisis within the system. Cystic fibrosis imposes a drain upon all
three of these resources--time. money. and energye-as families attempt
to deal with the disease and its associated hardships.

Another resource is the help families receive from the social
environment (Thomas. 1987). Examples might be home-bound teachers for
children too ill to participate in a regular school experience. or
household and child care assistance from a local church group. On a
more subtle note. support from the environment may take the form of
approval from society for the way in which a particular family deals
with the stressors associated with CF.

From the preceeding discussion. it can be seen that resources
arise from within and from without the family. Some resources are the
result of attributes of the family and its members. while others are

results of characteristics of the stressor event itself.

97

Appraisal The third concept to be discussed is appraisal. Early
in this chapter. appraisal was defined as a cognitive process. whereby
a particular encounter with the environment is evaluated as relevant
to one's well-being (Lazarus and Folkman. 1984). In primary
appraisal. an individual evaluates whether he or she has anything at

stake in the encounter. In secondary appraisal. an evaluation is made

 

as to what. if anything. can be done to overcome harm or to improve
the probability of benefit (Folkman. Lazarus. Dunkel-Schetter.
DeLongis. and Gruen, 1986). Various options exist. including altering
the situation. accepting it. seeking more information. or holding back
from acting impulsively and in a counter—productive way (Folkman et
al. 1986. p. 992). Primary and secondary appraisals merge as
individuals determine whether the person-environment interaction is
regarded as significant to well-being. and if so. whether it is
primarily threatening. leading to harm and loss. or primarily
challenging. leading to mastery or benefit. It must be remembered
that both threatening (negative) and challenging (positive) appraisals
can produce stress in individuals and families. The resulting stress
does not reside in the particulat event/non-event or within the
individual. Instead. stress arises from the interaction between the
individual and the situation (Miller. 1981).

In the primary appraisal process. threat and challenge are not
necessarily mutually exclusive (Lazarus and Folkman. 1984). The

prospect of a child going to CF summer camp is likely to be appraised

98

as having the potential for gaining new friendships. physical skills.
and self-esteem. At the same time. the experience entails the risk of
a relapse in the child's condition. or the emergence of a sense of
independence. which would run counter to already established family
role relationships.

Just as threat and challenge can occur simultaneously. appraisals
can shift as encounters or experiences unfold. Early successful
efforts at dealing with a threat or loss encounter may result in
increased self-confidence. allowing individuals and families to change
their initial appraisal to one of challenge. Similarly. challenge
appraisals can quickly turn to threat appraisals if efforts to manage
an interaction with the environment--internal or external--do not
produce the anticipated outcome. Keeping up with peers in a physical
education activity may be initially appraised as a challenge by a
school age child with CF. who has experienced previous success in
certain athletic activities. and who remembers the warm glow of peer
admiration. But if shortness of breath and bouts of coughing stop his
efforts short. the challenge quickly becomes a threat as the child
anticipates loss of peer approval. and is reminded of the serious.
ultimately fatal. nature of the disease.

When individuals determine that something must be done about a
situation. whether a threat or a challenge. a further form of
appraisal is salient. The evaluation of what might be done is called

secondary appraisal (Lazarus and Folkman. 1984). "Secondary appraisal

99

activity is a crucial feature of every stressful encounter. because
the outcome depends on what. if anything. can be done. as well as on
what is at stake" (p. 35). This complex process takes into account
what response options are available. the likelihood that a given
response will accomplish what it is supposed to. and the likelihood
that one can be effective in employing a certain response.

Bandura's (1982) writings shed some additional light on the
concept of secondary appraisal. In his writing. Bandura discussed
outcome expectancy as one's belief that a given response will lead to
a certain outcome. Efficacy outcome refers to the understanding that
one can be successful in carrying out the behavior necessary to
produce the desired outcome--that one has power over outcome.
Individuals and families who are convinced they can master stressful
encounters through their own action are less likely to be threatened.
or to feel helpless or hopeless (Clark. Rosenstock. Hassan. Evans.
Wasilewski. Feldman. and Mellins. 1987; Gibson. 1988).

Rolland (1987) proposes a classification schema of chronic
illness which is helpful in understanding how individuals and families
appraise the stressors associated with these illnesses. The course of
the illness is an important variable. and Rolland classifies diseases
like cystic fibrosis as having a relapsing or episodic course. A
distinguishing feature of this disease course is the alternation of
stable periods of varying length with periods of flare-up or

exacerbation (p. 205). Strain on the family system occurs as a result

100

of both the frequency of transitions between remissions and
exacerbations. and the ongoing uncertainty of when a recurrence will
occur. Mishel (1981. 1988) pioneered research on the effect of
uncertainty of illness. and demonstrated that uncertainty hampers the
cognitive appraisal process. at both the primary and secondary levels.
Uncertainty occurs in a situation in which an individual is unable to
assign definite meaning or value to objects or events and/or is unable
to predict outcomes (Mishel. 1988). If a threat cannot be labeled. it
is not possible to identify responses which might successfully be
employed to deal with that threat. Uncertainty has been associated
with increased anxiety. depression. and pessimism about the future
(Mishel. 1988). If uncertainty occurs in families of children with
CF. it can possibly have a negative impact on the health of those
children.

A second variable in Rolland's (1987) classification schema of
chronic illness is outcome. The extent to which the illness will be a
likely cause of death and the degree to which it will shorten life-
span will have a profound impact on how individuals appraise stressors
of the disease. and since the usual cause of death for children with
CF is respiratory failure (Nelson and Vaughan. 1987). a common cold
may be interpreted as a crisis in these families because of its
respiratory component.

The most crucial factor in outcome is the initial expectation of

whether a disease will be a likely cause of death. CF is known to be

101

the cause of early death in its victims. The "it could happen" nature
of CF creates the possibility of over-protection by the family as they
appraise events/non-events in the context of imminent death.
Obviously. familial response to the onset of a common cold in the CF
child will be different than when a healthy sibling has the same
ailment.

Hyman and Woog (1982) list magnitude. i.e. the extent to which
stressors alter life circumstances. intensity (precipitousness of the
required change). and duration of stressors as important variables
influencing appraisal. Obviously. families of children with CF are
faced with stressors of great magnitude which cause complex. life-long
changes in family functioning. From a time perspective alone. chest
physiotherapy on a twice or more daily. lifelong basis (Nelson and
Vaughan. 1987) may necessitate such a tight time schedule that
forgetting to set the alarm for a given morning may throw the family
into a crisis. When one takes into account the life-long therapy
required by children with CF. and the extent to which this therapy can
alter family functioning. Hyman and Woog's (1982) emphasis on
intensity. duration. and amount of family change required helps
explain how families appraise the stressors of CF.

In assessing the appraisal process. it is important to note that
different family members may attach diverse meanings to the same
event/non-event. For example. a school-age child with CF who needs to

be hospitalized for intensive therapy during an exacerbation. may

102

appraise the situation as very positive. because school can be missed.
There is also the strong probability that other children with CF. with
whom close friendships have been developed. will be hospitalized at
the same time. making hospitalization socially gratifying.
Additionally. hospitalization frequently means extra family attention
and gifts. Conversely. parents and siblings may appraise the same
hospitalization as a crisis. because of the associated hardships and
drain of resources. and the reminder of the ultimately fatal nature of
CF. Parents will have to find time to visit the hospital during days
that are already full of activity. If the distance to the hospital is
far. travel expenses may be a burden. Siblings may become resentful
of the extra parental attention attended the sick child. and the fact
that they have to perform the chores ordinarily delegated to him. This
example serves to point out again that events do not carry with them
objective ratings of severity; this rating can only be the result of a
subjective process of cognitive appraisal. which comes from the
individual. rather than the event/non-event itself.

From this lengthy discussion of appraisal. it is apparent that
appraisal is a complex process. taking into account a multitude of
factors. The outcome of this process. however. can be described as
the definition the family makes of the seriousness of the experienced
event/non-event (McCubbin and Patterson. 1983). This subjective
meaning is derived from the family's values. and its previous

experience in dealing with stressors. Thus. a family's outlook can

103

vary from seeing most stressors as challenges to be met. to
interpreting most stressors as uncontrollable and an overwhelming
threat to family functioning. Stressors that are appraised as
challenges carry with them the possibility of growth and gain. Those
that are appraised as threats may become crises that overwhelm the
family's ability to cope.

Non-hassles In the proposed conceptual model. the appraisal

 

process results in events being classified as non-hassles. hassles. or
crises. Events which are classified as non-hassles are those day-to-
day events which have been incorporated into a family's usual mode of
functioning. and therefore. responding to them requires no unusual
expenditure of energy.

A family's usual mode of functioning is not a situation which
"just happens" as the result of parents and children coming together
to form a family unit. Unlike an automobile. which functions in
certain prescribed ways after being assembled. families develop a mode
of functioning which is highly dependent upon feedback from previous
experiences. When confronted with novel interactions with the
environment (internal or external). organisms. from the moment of
birth. respond in ways which in turn affect future interactions in an
ever increasingly complex spiral of responses (Whaley and Wong. 1989).
As families form. the various members bring with them feedback from
all previous environmental encounters. which influences appraisal of.

and responses to. subsequent encounters (Miller. 1980). Thus.

104

situations which initially call for adjustment or adaptation of family
functioning. eventually become incorporated into day-to-day
functioning (McCubbin and Thompson. 1987). An example relevant to CF
would be the chest physiotherapy performed on a daily basis. usually
by parents. for children with CF. Initially. this task requires a
major shift in family functioning to accommodate the extra time and
energy involved. Eventually. however. chest physiotherapy becomes a
part of the daily family routine. so it is appraised as a non-hassle.
But if there arise associated hardships. such as unexpected additional
time demands on a given day. performing chest physiotherapy may call
for changes in family functioning and a revision of appraisal to
hassle. or even crisis.

Hassles Hassles are the "irritating. frustrating. distressing
demands that. to some degree. characterize everyday transactions with
the environment" (Kanner. Coyne. Schaefer. and Lazarus. 1981. p. 3).
Hassles are inclusive of relatively minor stressors of everyday life.
such as getting caught in traffic jams. misplacing things. or breaking
a shoelace. Because the unit of stress in hassles is relatively
small. and the stressor so common-place. they are usually taken for
granted and considered less important than more major life events
(Kanner et al. 1981). But as common-place events. hassles can
accumulate. and everyone has experienced days when nothing goes right.
Such days can happen through the coincidental occurrance of several

small events (e.g. a traffic jam. arriving five minutes late for work.

105

receiving a parking ticket. and getting caught in the rain without an
umbrella). And any single hassle may be the "straw that breaks the
camel's back" (Zautra. Guarnaccia. and Dohrenwend. 1986). leading one
to define an event/non-event as a crisis. rather than a hassle.

In the preceeding chapter. literature was cited which supported a
positive relationship between reported hassles and somatic symptoms.
How does this happen? In chapter I. the assumption was made that
hassles require expenditure of energy and consequently. can be energy
depleting. Children with CF are already in a precarious state. given
their alterations in nutritional and respiratory status (Nelson and
Vaughan. 1987). If energy is used to deal with hassles in the
environment. less energy is available for meeting the demands of CF.
e.g. increased work of breathing or impaired absorption of nutrients
(Harris and Nadler. 1983).

Crises If an event/non-event is perceived to be a "sharp or
decisive change for which old patterns of functioning are inadequate".
it is defined as a crisis (Hill. 1958 A). Crisis is characterized by
the "family's inability to restore stability. and by the continuous
pressure to make changes in the family structure and patterns of
interaction" (McCubbin and Patterson. 1983. p. 20). A crisis taxes or
exceeds the family's ability to deal with its associated hardships.
and involves major change in family structure and patterns of
interaction in order to survive (McCubbin and Thompson. 1987).

Conversely. if families are able to use existing resources to resist

106

systemic change and maintain stability. stressor events do not become
crises.

Obviously. because major changes in functioning are required.
crises are energy depleting. with the potential for unfavorably
influencing health. This relationship has been shown in Chapter II of
this paper. 'But crises are generally acute/non-recurrent stressors.
with defined start and stop points (Zautra. Guarnaccia. and
Dohrenwend. 1986). Resolution of a crisis shunts energy back into the
family system. Hassles. on the other hand. tend to be
chronic/recurrent in nature. leading to continuous "dribbles" of
energy as families deal with them. Additionally. crises may be dealt
with more effectively and expediently than hassles. because they are
taken more seriously (Kanner et al. 1981). Crises are hard to ignore.
and demand some change in family functioning which. if successful.
would allow for a return to a state of equilibrium. These
characteristics of hassles and crises are advanced as plausible
explanations to support data showing the relationship of hassles to
decline in health.

Crises may arise. not only as the direct result of an interaction
with the environment. but also indirectly from the effects of dealing
with these interactions. In other words. families may experience
crisis not as a result of the hardships inherent in the stressor
situation. but also from the trial and error efforts to manage the

situation (McCubbin and Patterson. 1983). Thus. crisis may not occur

107

as the result of families having to provide chest physiotherapy daily.
but from the acting-out behavior of siblings who resent the extra time
parents spend performing the activity.

Responses. adjustment. and adaptation Following the assignment

 

of events as either non-hassles. hassles. or crises. there occurs a
response. during which an attempt is made to return to a state of
equilibrium (McCubbin and Figley. 1983). To respond is to "make a
reply or answer; to act in return" (Morris. 1982). For a response to
occur. there must be an antecedent stimulus (McCubbin and Figley.
1983). In the proposed conceptual model. a response occurs after the
event/non-event has been appraised and categorized.

Responses to events/non-events are influenced by the resources
brought to the situation and the appraisal process. The latter
concepts. resources and appraisal. have been discussed at length
earlier in this paper. and their meaning remains constant when applied
to the response stage in the conceptual model. The difference is
that. whereas previous discussion centered around forming a definition
of an event/non-event. the application now refers to the influence of
resources and appraisal on the active stage of making a response. The
following example serves to demonstrate a response to a perceived
hassle.

If the mother of a child usually provides chest physiotherapy.
but becomes ill herself. the task will need to be performed by another

family member. Assuming that this represents a small change in

108

function. the situation would be appraised as a hassle. based on the
assessment that there are resources available (time and energy) to
meet the demands of the situation. Then. at the response stage. these
resources are actually used. e.g. getting up one-half hour earlier.
or adjusting one's usual morning appointment schedule. to manage the
hassle. and return to a state of equilibrium.

The outcome of response to hassles is shown in the conceptual

model to fall on a continuum of adjustment. ranging anywhere from bon-

 

adjustment to mal-adjustment. To adjust means "to change so as to
match or fit" (Morris. 1982. p. 16). Obviously. if adjustment occurs
in response to hassles. which are relatively minor stressors. the
adjustments made are correspondingly minor (Kanner et al.. 1981). In
the description of hassles earlier in this chapter. it was noted that
responses do not tax or exceed the family's ability to manage them.

It appears. then. that resources are adequate to deal with the
hassles. but that they may need to be manipulated. as in the previous
example of getting up thirty minutes earlier to perform chest
physiotherapy.

In the preceeding example. adjustments were made that returned
the family to a state of equilibrium. and hon-adjustment was the
outcome. Conversely. efforts at adjustment may be unsuccessful.
leading to mal-adjustment. and a continuing or worsening of the
disequilibrium (McCubbin and Thompson. 1987). Getting up thirty

minutes early could just as easily lead to mal-adjustment. if

109

corresponding changes in the substitute caregiver's personal schedule
were not planned for. resulting in missing a school bus or forgetting
to take homework to school. In mal-adjustment. the hassle is not
managed. and new stressors are added to the situation. because someone
will have to transport the child to school. and the forgotten
homework may mean a lower grade.

If events are appraised as crises. efforts made to return to a

state of equilibrium result in adaptation. falling somewhere on a

 

continuum from bon-adaptation to mal-adaptation. Although McCubbin
and Thompson (1987) include adaptation as a major concept in their T-
Double ABCX model of family adjustment and adaptation. their efforts
to define the word leave the reader somewhat confused. What does
emerge clearly in their discussion is that adaptation involves major
changes. that it occurs over time. and that it involves both
individual-to-family. and family-to-community changes in functioning.
Resources are taxed or inadequate. and former structure and patterns
of family functioning are inadequate (McCubbin and Thompson. 1987).
Help will probably need to come from outside the family system.and
family roles may undergo significant changes.

The hospitalization of a child with CF is often appraised as a
crisis. because it is a situation which calls for major changes in
family functioning. Hardships associated with hospitalization might
be extra time for hospital visitation. breakdown of the already old

and undependable family car. and the extra expense of buying fast-food

110

for the family if the mother is not there to cook meals. Responses
might include going without sleep for prolonged times. having siblings
do the housework (change in role). getting a loan for a new car. or
asking a relative for temporary live-in help.

If changes are successful at resolving the crisis of
hospitalization over time. hon-adaptation will result (McCubbin and
Thompson. 1987). But if. for example. having a relative live in to
help causes increased discord among family members. mal-adaptation
results. and family disequilibrium continues or worsens.

The feedback loop The final step in the proposed conceptual

 

model is the feedback loop. It is shown to occur following attempts
at adjustment or adaptation. This is somewhat misleading. unless one
follows the loop and determines that feedback is shunted back into
both the early appraisal and later response stages of the model.
influencing the outcome of these stages. From a systems perspective
(Hazzard. 1971). feedback is the return of a portion of the output of
any process or system to the input. More generally. feedback is any
information about the result of a process. This information is used
both in appraising whether events/non-events are non-hassles. hassles.
or crises. and in determining how to respond to them. Logically. if a
problem has been dealt with successfully in the past. feedback
(information) about this previous success will influence how similar

problems are appraised in the future. In like manner. unsuccessful

lll

encounters provide information that will exert negative influence on
future appraisals (Lazarus and Folkman. 1984).

If one has been successful in dealing with a certain stressor.
skills are developed which become resources for dealing with future
stressors. Also. a sense of accomplishment increases self-esteem and
a feeling of self-efficacy which is fed back to affect future
encounters with events/non—events. Conversely. following
unsatisfactory attempts to deal with present stressors. individuals
may feel helpless to deal with future stressors. Or. from a positive
perspective. feedback from unsuccessful attempts may motivate
individuals to seek new and better responses. Thus. feedback can
influence how one appraises stressors. and how these stressors are
dealt with.

Because family hassles are continuous in nature (Kanner et al..
1981) there is the distinct probability that families are undergoing
multiple hassles at any given time. These hassles may result in a
pile-up of associated demands. which cumulatively result in an
exhaustion of resources available to deal with them. At this time.
the pile-up of demands may lead to a crisis. A crisis appraisal is
the result of feedback of information indicating an exhaustion of
resources for dealing with multiple stressors.

Stressors. whether hassles or crises. are accompanied by certain
inherent demands. But positive efforts to deal with these stressors

may create additional demands of their own. In a previous example. it

112

was suggested that a family might obtain a loan to purchase a reliable
car to solve the problem of transportation when a child with CF was
hospitalized. The monthly payments associated with the loan. however.
may be very difficult for the family to handle. and what began as a
positive effort to manage is fed back into the system contributing to
pile—up.

Families of children with CF are undergoing chronic. on-going
stressors as a result of caring for the ill child. If the demands of
caring for this child exhaust family resources of time. energy. and
money. the information is fed back into the system via the feed-back
loop. and the next stressor that occurs may be appraised as a crisis.
even though it is relatively minor. The first stressor has not
successfully been dealt with before another one emerges. As a result.
there occurs a pile-up of demands. which. through feed-back. will
influence appraisal of. and responses to. ensuing events/non-events.

Feedback. as a concept. can be either positive or negative in its
influence on appraisal and responses. Positive feedback is
exemplified in a sense of efficacy. growth of competence. and the joy
of triumph against adversity (Lazarus and Folkman. 1984). Negative
feedback contributes to a sense that certain responses will be
ineffective for a given event/non-event. Negative feedback may also
lead to a sense of incompetence and inadequacy.

Positive and negative feedback are not necessarily correlated

with desirable and undesirable outcomes respectively. Positive

113

feedback about the effectiveness of certain responses may lead to the
incorporation of a standard response. quelling any impetus to seek new
and better response patterns. And negative feedback may stimulate the
search for improved ways of responding to events/non-events (Lazarus
and Folkman. 1984).

Consider the family of a school-age child with CF that does
everything as a family unit. from grocery shopping to nights out to
vacations. In such a family. positive feedback may inhibit the trying
of different response modalities. such as some individual time for
family members. or for parents to go out alone on occasion. These new
responses would probably lead to growth and development of family
members (Phipps. 1980). but they may not be tried unless the family
receives some negative feedback about former ways of functioning.

Summary of Discussion of the Proposed Conceptual Model

 

In Chapter III. a conceptual model has been advanced to show the
relationship of family hassles to the health of children with CF. The
model shows an event/non-event initially being appraised as a non-
hassle. a hassle. or a crisis. Following this designation. responses
are made. Non-hassle responses do not take extra energy. because they
are a usual and expected part of life. Hassles and crises. however.
require extra expenditures of energy. which may or may not be
available. Regardless. energy spent dealing with hassles and crises
is energy that is not available to children with CF. as they deal with

the disease and its associated hardships.

114

The conceptual framework developed in this paper is viewed as a
family model because it is used to describe behaviors of each
individual family member which impact upon family functioning. Since
the model is grounded. in part. on systems theory (Hazzard. 1971). it
is essential to establish how individual behaviors impact family
functioning. and vice versa. The author concedes that. at this point
in time. it is not known if a cumulative score of hassles experienced
by individuals really yields a family hassles score. Future studies.
based on this model. may give guidance to the development of family
hassles scales.

Although hassles are the concept of major concern in this model.
the presence of life stressors is continuous and circular. and it is
impossible to understand hassles without also understanding non-
hassles and crises. And special circumstances surrounding what would
normally be appraised as a non-hassle may turn it into a hassle. If
hassles overwhelm the capacity to adjust. a crisis often ensues. For
that reason. all three concepts appear in the model. and all three
have been discussed in detail.

The conceptual model assumes a family systems approach (Hazzard.
1971). whereby circular causality dictates that what happens to each
family member impacts on all members. This is the basis for
predicting that hassles experienced by family members cumulatively
will have a negative impact on the health of the school-age child with

CF.

115

In the following chapter of this paper. implications of the
concept of family hassles and health to the clinical nurse specialist
in primary care will be discussed. Imogene King's theory for nursing
will be used to explain the role of the clinical nurse specialist in
facilitating the adaptation of families of CF children to the everyday

hassles they encounter.

CHAPTER IV
IMPLICATIONS FOR PRACTICE. EDUCATION. AND RESEARCH
In the final chapter of this scholarly project. the nursing
theory of Imogene King (1981) will be presented as a means to guide
the practice of Clinical Nurse Specialists (CNSs) in primary care who
work with families of children with cystic fibrosis. Integration of
King's theory with the conceptual model proposed in Chapter II will be
discussed. The role of the CNS in primary care will be discussed. and
implications for nursing practice. education. and research will be
presented.

'Imogene King: A Theory for Nursing

 

In developing her theory for nursing. King addresses a dynamic
state. whereby humans exchange energy and information between the
person and the environment. Thus. King subscribes to an open systems
philosophy in which personal. interpersonal. and social systems
interact with each other. Her theory is labeled a theory for goal
attainment. and it is based primarily on the interpersonal system.
i.e. the interaction between the client and the nurse (see Figure 3).

Although King's theory is primarily concerned with the
interpersonal system. she also stresses that an understanding of the
way human beings interact with the environment to maintain health is
essential to nurses (p. 2). Reference is made to both the internal
and external environment. King does not imply that the environment is

an immovable force to which humans must conform. but that a major

117

responsibility of nurses is to assess the environment. and facilitate

change in the environment. or in the individual. to promote health.

socnu. srsrms \
(Society)

\

’_----—----*

‘\

‘\

INTERPERSONAL SYSTEMS
(Groups)

—-----‘

I
PERSONAL SYSTEMS
I (Individuals)
1

I»
A F::::E:.>

\--——--—-’

O

‘—-————-—-—-—~ —‘
——-——-_-————-———vl

\ /

\ I

_ —-------—---’

Figure 3: A conceptual framework for nursing: dynamic
interacting systems. Adapted from King (1981).p. 11.
In King's theory for goal attainment (see Figure 4). health is
given a high priority in the values of contemporary society. King's
definition of health is:
Dynamic life experiences of a human being. which implies

continuous adjustment to stressors in the internal and

118

external environment through the optimum use of one's
resources to achieve maximum potential for daily living (p.5).
King's definition of health is consistent with the conceptual

model developed earlier in this paper (see Figure 2. Chapter III).

 

 

 

 

r--- W -- — —.
”r“ :
Jmknmmfl l
Inna ' i
I j
j [ ~M?l|__ llmnumw--—9HNmNmflon-———-9rmmrmoumn
M w i
I
Perm i
L -------------- W ——————————— J

Figure 4: A process of human interaction. Adapted from
King (1981). p. 11.

Families of children with CF are shown to undergo ongoing
stressors. directly from the disease itself. and indirectly from the
treatment for the disease. Stressors might be internal. as in the
case of deterioration of pulmonary function or decline in weight for
children with CF. They may also be external. as illustrated by
financial strain related to hospitalization of the sick child. Another

external stressor frequently experienced by CF families is the lack

119

of time for family activities. secondary to the time commitment
necessary to provide chest physiotherapy for the child with CF.

According to King. individuals are continuously responding to
stressors. and trying to adjust through successful use of their
resources. Because responses require energy. there is the possibility
that depletion of energy may occur. especially if there occurs a pile-
up of stressors which tax or exceed available resources. It is at
this point. when existing resources become inadequate. that stressors
interfere with health and the maximum potential for daily living. If
resources are inadequate. the CNS must assist clients in obtaining the
resources necessary for adjustment or adaptation to the stressors
which are present.

King asserts that the goal of nursing is to help individuals
maintain their health so they can function in their roles (PD. 3 and
4). The domain of nursing includes promotion of health. maintenance
and restoration of health. care of the sick and injured. and care of
the dying (p. 4). King's definition of nursing is as follows:

A process of human interactions between nurse and client whereby

each perceives the other and the situation. and through

communication. they set goals. explore means. and agree on means

to achieve goals (p. 144).

The human interaction between client and nurse. which is the
basis for King's nursing theory. is initially influenced by

perceptions of the situation. as well as perceptions of each other.

120

Perception is a process of organizing. interpreting. and transforming
information from sense data and memory. Thus. perception is seen to
emanate not only from the situation at hand. but also from previous
life experiences. Perception gives meaning to one's experience.
influences one's behavior. and. above all. represents one's image of
reality (King. 1981. p. 24). In the perception phase. the stressor
event is appraised for severity and meaning through the process of
cognitive appraisal (Lazarus and Folkman. 1984). Additionally.
clients evaluate how effective they think they will be in dealing with
the stressor. The client also develops a perception of the nurse. A
caring attitude. the sincere desire to help clients. and knowledge all
enter into this perceptual image held by the client.

An important aspect of this nurse—client interaction is the
verification of each other's perceptions as they plan together to
achieve goals (King. 1981. p. 26). Perceptions. rather than events
themselves. represent reality. It is essential for nurses to have a
knowledge of client perception if they are to help in the
identification and achievement of goals. Verification of perceptions
can occur through verbal or non-verbal communication. The nurse's
perceptions of the situation and the client must be based on an
accurate assessment of developmental level. knowledge. resources.
previous experiences. and emotional state.

In applying King's theory for nursing to the care of families of

CF children. the nurse must remember that perceptions held by various

121

family members as to the severity of any given stressor may be
markedly diverse. Therefore. before making any progress toward goal
attainment. the unique perception of each individual family member for
a given stressor must be assessed. Obviously. the "opportunity" for
the CF child to stay home from school with sickness will be perceived
as very stressful by a parent who needs to work outside the home for
financial reasons. but who will have to miss time on the job to care
for the sick child.

The outcome of perception is judgment. whereby the client
determines if the nurse can offer help. Similarly. the nurse makes a
judgment as to whether or not she can help the client. For example.
the CF child may need help in dealing with being "different" from
other children in activity tolerance. and might perceive that the
nurse can help his or her adjustment to the stressor. The nurse. in
turn. perceives the need for help. and determines that she can offer
the needed assistance. At this stage. the process of interaction
begins.

Elements of the interactive process include action. reaction. and
transactions. King provides vague and sometimes overlapping
descriptions of these concepts. but it appears that after the judgment
is made to offer (nurse) or receive (client) help. the two individuals
mutually identify goals and explore the means to achieve them. This
response is the action. and it initiates interaction of nurse and

client working toward attainment of goals. For example. the nurse and

122

the client might mutually agree that a weight gain of five pounds
within the next month is an appropriate client goal. and they explore
strategies to meet this goal in the action phase.

The reaction occurs in response to action. Reaction represents
the actual steps that are taken to achieve the goal. In the above
example. reactions might be having a high-calorie snack at mid-
afternoon and bedtime. and eating extra portions of bread with meals.
If the goal of a five pound weight gain in met. transaction has
occurred. Transaction is seen as the outcome of a successful nurse
nurse/client encounter.

Throughout this interactive process. presenting conditions are
recognized and goal-related decisions are made. Actions are taken to
achieve the goals. Transactions. or attainment of goals. result in
satisfaction. effective care. and enhanced growth and development.

King's model depicting her theory of goal attainment in nursing
shows a feedback loop from transaction (goal attainment) back to
perception. Curiously. the model implies that all interactions
between client and nurse result in the attainment of goals. These
positive outcomes then influence future encounters with the
environment. For example. successfully dealing with the stressors of
a CF child's hospitalization may increase self-confidence and help
instill an "I can do it" attitude when similar stressors present in

the future.

123

But anyone who has even remotely observed human experiences
realizes intuitively that such an ideal situation does not always
occur in day-to-day living. Indeed. a more accurate representative
portrayal would show a lack of goal attainment as an alternate
outcome. with feedback from this unsatisfactory situation traversing
the feedback loop to influence future perception of events. Negative
feedback might lead to a lack of self-confidence and a feeling of low
self-efficacy.

As a chronic. potentially fatal childhood illness. CF can
appropriately be considered within King's stated domain of nursing.
i.e. care of the sick. and ultimately. care of the dying. The
ongoing. continuous. disruptive nature of the disease and its
treatment adapts easily to King's definition of health as a continuous
adjustment to stressors in the internal and external environments.

King's theory of goal attainment can logically be applied to
nursing care of families with CF children. Because CF is chronic. and
characterized by remissions and exacerbations. most of these children
have frequent access to the health care system. Even if the disease
is stable. and an affected child's health is relatively good. routine
follow-up visits with the care provider are scheduled every six
months. Consequently. these families can usually be worked with in a
longitudinal fashion. Establishment of an ongoing relationship
between family and nurse would naturally enhance any goal attainment

which is based on an interaction model. such as that advanced by King.

124

Utilizing King's theory. the client is not just the child with
CF. but also each family member. Because families are open systems.
the experiences of each member affects all other members in circular
fashion (Hazzard. 1971). That is the basis for the question posed in
this paper. ie. What is the relationship between the health of school-
age children with CF and the hassles experienced by their families?

Current research fairly conclusively supports a positive
relationship between stressors and health. Because of this. nurses
help clients identify stressors and manipulate resources in such a way
as to adjust to the stressors (goal attainment). If resources are
inadequate. assistance is given to the client to obtain the necessary
resources. Resources commonly identified as important to families
with CF children are time. money. knowledge. and social support. If
the nurse assumes that stressors can negatively impact on the health
of CF children. resource allocation becomes an important focus of her
care.

Cystic Fibrosis in Primary Care

Primary care is principally community and ambulatory based. and
is characterized by accessibility. comprehensiveness. coordination.
continuity. and accountability. Its content is health maintenance.
reasoned screening. management of common and simple illness.
monitoring of chronic illness. and achievement of a dignified death
(Mauksch. 1981). Primary care is provided by physicians. CNSs. nurse

practitioners. and physician assistants.

125

Many children with CF are cared for in a major CF center.
Others. who may live a great distance from one of these centers. will
receive care from non-specialized providers. Even when children
receive CF care at a major center. parents are encouraged to also have
a primary care provider who manages other aspects of the child's
health or illness. It cannot be forgotten that these children will
need the same immunizations. developmental screening. anticipatory
guidance. and care for usual childhood illness as will their healthy
counterparts.

Of course. this primary care needs to be coordinated with CF
care. but emphasis must be placed on the child as a developing being
first. rather than "a case of CF". Hopefully. this type of focus by
health care providers will provide helpful role modeling for parents
of these children. It is easy for parents to respond to their
chronically ill children by being over-protective. and not allowing
them to participate in activities which are critical to the
development of healthy ego identities. But if primary care providers
are emphasizing the "normal" aspects of these children. parents may
find it easier to realistically assess their child's developmental
needs and capabilities.

If communication with the CF specialists is carefully maintained.
the CNS is an ideal person to provide primary care for children with
CF. Perhaps the best situation would be for the CNS to have a joint

practice with a physician provider. This would allow her to

126

concentrate on what nursing's focus is. ie. assisting clients to adapt

to real and potential states of disequilibrium. while providing a

ready source of referral for problems outside her scope of practice.
Implications for Advanced Nursing Practice

Cystic fibrosis is a complex disorder which imposes multiple
stressors on both affected children and their families. These
families require ongoing care because the disease is never cured. The
ultimate early death experienced by these children adds yet another
dimension to the manifold problems undergone by families with chronic
illness.

Nurses in advanced practice who work with CF families are first
and foremost concerned with the health of these children. But the
focus of the CNS goes beyond the pathophysiology and medical treatment
of the disease. Because nursing is defined as the diagnosis and
treatment of human responses to actual or potential health problems
(American Nurses Association. 1980. p. 9). the CNS must continually
assess her CF clients' and families' responses to the stressors of the
disease and its treatment.

In Chapter III. a conceptual model was presented to show how
stressors are defined and managed by CF children and their families.
Since dealing with multiple stressors requires energy. a pile-up of
stressors could conceivably affect the health of these children.
because less energy would be available for physiological responses in

day-to-day living. This viewpoint has been supported in the

127

literature (DeLongis et al.. 1982; Kobasa. 1982; Locke. 1982; McCubbin
et al.. 1983; Sarason. 1985). It seems prudent. then. to assume that a
major focus of the CNS should be to help the family identify
stressors. decrease the numbers of stressors. when possible. and
assist them to deal more effectively with those stressors which are
inevitable.

Identification of Stressors Many stressors associated with CF

 

are obvious to families because they require major changes in
function. There are many other stressors (hassles). however. which
are more subtle. and which may not be recognized as having any impact
on the health outcome of CF children. Hassles are "minor" occurrences
which happen daily in the lives of everyone. But in CF families.
additional hassles arise which may be associated with family attempts
to manage the disease and its treatment.

A way to help families identify hassles would be to have school-
age and older family members complete a modified. shortened hassles
checklist. Pre-school children could be interviewed to get insight
into what events they perceive to be hassles. As an initial step.
hassles checklists serve to increase awareness of the common hassles
families experience. Additionally. when there is a decline in the CF
child's health. as evidenced by a decreased Swachman score or the need
for hospitalization. a time-line of hassles. looking retrospectively.

might demonstrate to families the relationship between hassles and

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health. This perspective might motivate family members to try to
eliminate hassles. when possible. or deal with them more effectively.
When helping family members identify hassles in their lives. it
is important for all members to understand the hassles being
experienced by each other. A family meeting with the CNS could be
planned during which hassles of all family members could be shared.
The CNS will need to guide this type of session carefully so it
remains a vehicle for promoting understanding of. rather than placing
blame on. each other. In planning this family session. the CNS
remembers that one of the characteristics of primary care is
accessibility. For this reason. it may be necessary to schedule an
evening home visit. to accommodate family work and school schedules.
Since school-age children with CF are being considered
specifically in this paper. it would be helpful for the CNS to discuss
the health impact of hassles with school personnel. Roughly seven
hours per day are spent in school; consequently. many hassles are
likely to experienced in the school setting. Teachers could be
helpful in two ways. They could first identify for the CNS the types
of school-related hassles children are likely to encounter. Secondly.
teachers could assist CF children to deal more successfully with
hassles. Teaching time-management skills might help eliminate some
hassles. Relaxation training could alter physiological responses to

hassles. These two techniques traditionally are part of stress

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management programs for adults. but many researchers are recognizing
that children. too. can profit from learning them.

When taught time-management and relaxation techniques. students
with CF would not need to be singled out as different from their
peers. These skills could be taught to all children as part of health
education. There would be peer support for engaging in the behaviors.
From a developmental perspective. peer support and acceptance become
increasingly important during the school years (Erikson. 1963; Whaley
and Wong. 1989).

The CNS must continue to help CF families assess for the presence
of hassles on a continuing basis. As family members grow and devélop.
perspectives will change. Anticipatory guidance. i.e. discussing with
individuals what they can expect to encounter at different times in
their lives. will help them be more aware of ongoing hassles. and
better prepared to deal with them.

In the process of assisting CF families to identify hassles. the
CNS functions primarily as an assessor. But she also works to teach
family members to become assessors. as well. By teaching this
assessment skill to family members. the CNS empowers them. promoting a
sense of independence and self-efficacy. Therefore. a second
characteristic displayed is that of educator.

The identification of hassles occurs an the perception phase of
King's (1981) process of human interaction. The nurse and the client

have come together. and each is perceiving the situation to determine

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if hassles exist. Because perception is one's concept of reality. the
nurse must know what her clients define as hassles. before she can
help them respond in a satisfactory manner.

Clients may need help in defining hassles. In contemporary
society. major life stressors are given more attention for their
affect on health than are micro-stressors. or hassles. For this
reason. individuals may not see the importance of identifying hassles.
By directly querying individuals about hassles. the CNS validates
their importance as a factor in health status.

At this early stage of the interactive process. it is imperative
that the CNS define her helping role with the CF family. If the
definition is vague and ambiguous. families may expect either more or
less help. or different kinds of help than assumed by the CNS role.
Good early questions to ask would be "What are your goals?" and "How
would you like me to help you meet your goals?" Of course. the CNS
role may change as family needs change. so it would be wise for the
CNS to redefine her role with the family on an annual basis. to be
certain family and CNS perceptions are congruous.

DecreasingHassles/ModifyingResponses to Hassles Frequently.
measures taken to reduce the number of hassles. and to alter how one
responds to them are interrelated. Single nursing interventions may
actually lead to the achievement of both outcomes. It is for that
reason that both concepts will be discussed in this section of Chapter

IV.

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King (1981) suggests strategies for goal attainment in her theory
for nursing. She refers to goal attainment as transactions. and
asserts that successful transactions depend upon mutual goal setting.
In other words. the nurse and the client must share a common goal. In
the context of this paper. the common goal would be alleviation of
hassles. or modification of responses to the hassles.

To accomplish mutual goal setting. the CNS functions in the role
of planner. A planner is "one who develops goal directed strategies
in collaboration with the client to facilitate maintenance and
achievement of health-oriented goals" (Michigan State University.
1986. p. 18).

The CNS initially determines goals of hassles management which
each family member has developed. She must then assess whether or not
these goals are realistic or appropriate. For example. if the child
with CF sets a goal of "beating up" his tormenter when teased about
small stature. frustration and anger will result not only toward the
offending child. but also with him/herself because the goal is
unattainable. The child can be counselled to set a more realistic
goal. such as remembering to respond to being teased by stating a
positive self-attribute. This tactic disarms his foe. and forces the
child to identify positive self strengths. such a patience.
intelligence. or kindness.

When hassles are not effectively dealt with. they may pile-up and

lead to crises (McCubbin et al.. 1983). In an attempt to help

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families eliminate. or deal effectively with hassles. the CNS can
teach time management skills to all family members. There is no doubt
that the treatment of CF requires an extra time commitment. and
inefficient use of time by family members can easily lead to crises.
Keeping lists and schedules of "things to do" can be suggested as a
means of managing time. Time management in the school setting has
already been discussed. Besides helping to decrease unnecessary
hassles. time management might also contribute to a sense of control
and accomplishment.

It was pointed out earlier in this chapter that about seven hours
of a school-age child's day are spent in school with peers. Many of
the hassles that confront these children in a school setting arise
because peers and teachers do not understand CF. As a result. they
concentrate on how CF children are different from. rather than similar
to. themselves. The CNS can visit the classroom. emphasizing that the
disease is not contagious. and explaining its visible aspects such as
small stature. persistent cough. exercise intolerance. and enzyme
replacement with meals. This understanding will replace fear and
ignorance. increase peer acceptance. and provide valuable social
support for the CF child.

Several researchers have shown that most CF families adjust
satisfactorily to the disease and its hardships. and that it is
important to assess family strengths. rather than just family

weaknesses (Cowen et al.. 1985; Gibson. 1988; Stullenbarger et al..

133

1987). By pointing out strengths to family members. nurses reinforce
their feelings of self-efficacy and control. In discussion of the
proposed conceptual model in Chapter III. self-efficacy was shown to
be an important consideration in how one perceives stressors. and the
ability to manage them (Clark et al. 1987). Self-efficacy is
strengthened by the positive reinforcement provided by the CNS.

Resources are known to be an important factor when assessing how
family members deal with hassles (McCubbin. 1983). When resources are
strained or inadequate. CF families may experience increased hassles.
which could conceivably lead to crises. A resource which is commonly
strained in CF families is money. Expensive medication and equipment.
special food. frequent health check-ups. and hospitalizations all
contribute to CF related expenses. In Michigan. children with CF
receive assistance from Crippled Childrens Services (CCS). which is
administered by the local department of public health. But it is well
documented that with CF. there may be five to ten thousand dollars per
year extra expenses which are not covered by any type of insurance
(Lewiston. 1985). These extra expenses include travel expenses to the
CF center. purchasing prepared meals for the family at home during a
CF hospitalization. or missing work to care for the CF child when he
is too sick to go to school.

The CNS must determine what resources are available in the
community which would supplement CCS or private insurance. Sources

might be churches. professional service organizations. and special

 

134

interest groups. Accessing sources of assistance can be a confusing
process for families. and the CNS can use her knowledge and expertise
to facilitate the process.

Another resource which is important for the CNS to consider when
working with CF families is social support. Yarcheski and Mahon
(1986) showed that social support may decrease the family's
vulnerability to stressors. With chronic illness. support systems act
to share the burden of the illness. The most important social support
is the family. and a crucial variable in family sharing of the burden
is the ability to communicate (Holaday. 1984). The CNS should assess
the quality of family communication. and institute ways to improve
communication. when indicated. A practical way to increase family
awareness of their communication would be role-playing in a family
setting. Family members can be assigned each others roles. and given
situations to act out. Role-playing can also be used as the family
tries out the communication techniques taught by the CNS.

Social support for parents may be received from parent-to-parent
support groups. These groups help reduce stressors because they
increase the parents' understanding of their CF child's illness and
care management. Support group participation also acts to clarify
misconceptions. share coping strategies. and increase awareness of
individual/family way of dealing with strategies. Honesty.
understanding. and support seem to be key ingredients in the success

of these groups. The CNS refers parents to an existing support group.

135

or assists them in establishing one. if necessary. Consideration
should also be given to the establishment of a support group for
siblings of the CF children to help them deal with their own unique
stressors.

The CNS needs to recognize herself as an important source of
social support for CF families. Her relationship is on-going. and the
emphasis on holism assures a supportive relationship with these
families. It is important for the CNS to continue this helping
relationship when these children are hospitalized. since the
hospitalization experience is a time when family stressors are certain
to be increased. In attempting to decrease the incidence of hassles
as much as possible. the CNS collaborates with the health care team to
assure that client and professional goals are the same. so that goal
attainment is a realistic. expected outcome. The CNS should
participate in formulating the written hospital plan of care. and
should make herself available as an expert for consultation in matters
related to CF children and their families. Hospital privileges should
be a negotiated part of the CNS' work contract. so that there is the
flexibility of being available to CF families during other than the
traditional eight-to-five work hours.

In addition to inadequate resources. altered childrearing
practices may contribute to stress in CF families. Because CF is
genetically determined. parents may feel a burden of guilt. This

guilt often interferes with the development of realistic expectations

I

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for the CF child. and difficulties with discipline may arise. Holaday
(1984) discusses the concept of normalizing as being helpful to CF
family functioning. In normalizing. the CNS directs parental efforts
toward shaping and maintaining their child's physical and social
normative skills. School attendance. appropriate peer activities.
realistic discipline. and future planning should be encouraged by the
CNS. Cystic Fibrosis Camp is an outstanding example of normalizing.
because it allows these children a chance for a summer camp activity.
while receiving the intensive CF treatment which is a part of their
everyday lives.

Parents can be encouraged to work with social systems. such as
school or government. to help change policy which would contribute to
the integration of the CF child into the mainstream. This activity
would promote normalization. If this type of involvement is a novel
activity for CF families. they will profit from CNS guidance.
Providing the names and addresses of legislators. and describing the
legislative process are practical ways to assist parents to become
change agents.

Normalization strategies may lead to several useful outcomes for
families. First. normalization minimizes the impact of the chronic
illness by maximizing the child's abilities. Parental anxiety will be

reduced. and they will experience a sense of hope for a better future

for the ill child. The child will become more independent and skilled

 

137

in self-care. which will permit parents more time and energy to devote
to other activities.

Venters (1981) discusses the need for families with chronic
illness to endow the illness situation with a personally significant
meaning as a way to decrease vulnerability to stressors. Assigning a

meaning to events leads to establishment of feelings of mastery and

 

self-sufficiency by family members. Feeling of mastery and self-
sufficiency. in turn. decrease the number of hassles experienced
because stressors would tend to be taken in stride as manageable and a
normal part of adjusting to the illness. The search for meaning seems
to provide motivation to meet and manage hassles. and to strive for
achievement in the face of trouble.

A search for meaning can take different forms. Families with a
strong religious background may define the illness with a religious
philosophy. Strong support is provided when the family sees the
illness as a planned part of their lives (Gibson. 1988). The CNS can
assess what meaning is given the illness by asking family members
"What does it mean to you to have (CF) (3 child with CF) (a brother or
sister with CF)? If a spiritual meaning is assigned to CF. the CNS
should ascertain who the spiritual support person is (minister.
priest. rabbi. etc.) and educate that support person fully about CF.

The family may also search for meaning from a medical and
scientific approach. They study the etiology of the disease. as well

as current means of treatment. Readings and discussions bring into

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focus what must be done for the child. The family learns which areas
of the child's life and function are not affected by the illness. and
can develop plans to ensure as much normalcy as possible. The CNS
assists the family in this task by providing factual information about
CF. and reinforcing attempts to learn more about the disease. If
family members express an interest. they are encouraged to act as
support persons for other CF families. to volunteer for the Cystic
Fibrosis Foundation. and participate in fund-raising activities.

Individuals who have a sense of control and mastery over their
own destiny can decrease hassles in their lives. or optimize their
adjustment to unavoidable hassles (McCubbin et al.. 1983). For this
reason. the CNS encourages self-care activities in CF children at an
early age. If these children assume responsibility for their own care
rather than depending entirely upon parents. they are more apt to
conform to care modalities during adolescence. a time when dependence
upon parents is perceived to be unacceptable. In promoting early
self-care. the CNS works not only with the child. but with parents as
well. to develop realistic expectation.

As stated earlier. realistic expectations of CF childrens'
abilities may be difficult for some parents. and feelings of guilt for
passing the disease on may prompt parents to do more than necessary
for the child. This situation is particularly apt to arise when

parents do not have a future vision for their sick child. Helping

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parents develop a future vision assists them in understanding why
self-care at an early age should be promoted. With modern treatment.
over half of these children survive beyond twenty years (Taussig.
1984). so college and career planning are appropriate. It would be
helpful for the CNS to have parents of well-adjusted CF adolescents
meet with parents of younger CF children. to assist them in developing
a future perspective.

Although the nursing practice implications which have been
discussed in this section have primarily been directed toward the
entire family. some special considerations need to be made for
siblings of CF children. A crucial factor for the CNS to keep in mind
is the developmental level of the siblings. This knowledge will aid
in assessing the meaning siblings attach to the disease. Young
children engage in magical thought. and may suffer immense guilt by
thinking they caused exacerbation of the illness. or even death of
their sibling. by thinking bad thoughts. Young children also may view
the extra attention paid to their sick brother or sister as punishment
to themselves by parents for some bad deed. Their understanding of
illness causation may not be accurate. and fear of catching CF may be
paramount in their minds (Whaley and Wong. 1989). As children grow
older. and develop an accurate understanding of the etiology. they
become aware of their chance of passing the disease on to future
children of their own. Having a sibling die may evoke intense guilt

at having been spared. It is imperative that the CNS discuss these

140

developmental needs with parents. so parents can help the siblings
deal most effectively with them.

Mayerowitz and Kaplan (1967) found that parents of CF children
became very anxious when their healthy siblings asked about the
disease. With this in mind. the CNS realizes that siblings may have
many unanswered questions about the illness. and this knowledge
deficit may contribute to anxiety and loss of control for these
children. It should be part of family care for the CNS to meet with
healthy siblings individually. to assess what their knowledge base
about CF is. and provide factual knowledge which is cognitively and
affectively appropriate for their developmental level.

Implications for Nursing Education

 

There are three major areas to which the CNS can direct efforts
toward educating others about the relationship of the stressors of
life to health outcomes. These areas are basic nursing education.
continuing nursing education. and education of the public. The first
area to be considered is the basic educational preparation of nurses
in the various types of nursing curricula.

In many nursing programs. the concepts of adjustment and
adaptation to life stressors. which form the basis of much of nursing
theory. are an integral part of the educational philosophy. Nursing
students are taught that no individuals lead stress-free lives. and

that a major nursing focus should be directed toward relieving stress.

141

Many disease states are thought to result from chronic stress. and
others are seen to be exacerbated by stressful conditions.

The curricula which currently graduate the majority of practicing
nurses are those offering associate degrees in nursing. These
curricula are typically about two years in length. and there is not
much time to incorporate concepts of stress management into the
avalanche of pathophysiology which is usually taught. Ways to reduce
immediate stress in the illness situation are included (ie. pain
management. a calm environment. attention to basic human needs). but
empowerment of clients by teaching the stress reduction techniques
they can incorporate into their own lives is not a major focus.

The CNS who sees the long-term benefits of teaching stress
management can work at two levels. She can directly contact directors
of nursing education institutions. and discuss her concerns about a
more comprehensive inclusion of stress management teaching in the
curriculum. She can also take her concerns to state boards of
nursing. where policy is made. She should be thoroughly prepared to
defend this stance. by being knowledgable about research findings in
the area.

A second intervention relates to the need for inclusion of a
course in nursing theory in nursing programs. Most nursing curricula
are based upon a theoretical construct. which is commonly nursing
theory. But in many educational programs. students are not exposed to

the works of other nursing scholars. Thus. it is difficult for them

142

to develop a framework to guide their own nursing practice. Faculty
who have studied the advanced role of the nurse should teach students
the advisability of developing a conceptual framework of their own. to
guide them in an ever-increasingly complex practice setting. One of
the best ways to incorporate a theory into practice is to have to
defend it to others. This could be accomplished by having students
present various nursing theories to their peers in the classroom.
Another major concern of nursing education should be to prepare
beginning practitioners to read and critique research literature.
This would be best accomplished through inclusion of a formal research
class in the curriculum. Nurses are looked to as sources of accurate
information by their clients and families. even while still in the
student role. Also. with the current explosion of health care
information. nurses must be able to intelligently choose the nursing
interventions that research has shown to be the most efficacious in
client care. Directors of Nursing (DONs) in health care institutions
can further stimulate the interest in nursing research that was begun
in the classroom by keeping recent copies of nursing research journals
in conference areas and coffee-break rooms. DONs can also encourage
interest in nursing research by scheduling inservice classes. in which
nurses present various research findings. and discuss their
application to their specific clinical areas. The CNS has a sound
base in the research process. and she could act as both consultant and

educator to other nurses.

143

Nurses who are concerned with helping families adapt to the
stressors of chronic illness are finding that they need to be
knowledgeable about home-care nursing. Even if they function
primarily in an acute care institution (hospital). they need to
prepare clients with chronic illness for supportive care outside the
hospital after discharge. Children with CF often need nursing care in
their home at the end-stage of their disease.

Within the last two or three years. the explosion in the need for
home-care nurses has been phenomenal. and many hospitals operate their
own home-care nursing agencies. If nurses are to provide quality
care. which is focused on helping clients adjust and adapt to the
stressors of their disease and its treatment. they must receive a firm
base for home-care nursing in their basic nursing program. Home-care
nursing must have a strong nursing theory framework. because many
home-care interventions are not from a standard set of nursing
interventions. but rather require judgment and creativity on the part
of the nurse.

Another recommendation for nursing education is that change
theory be included as a prominent concept in the curriculum.
Management of life stressors is often dependent upon knowing how to
make changes in organizations or institutions. Nurses need a good
understanding of change theory. as well as how change can be
accomplished in various institutions/agencies. With long-term.

chronic illness. however. it is necessary that families themselves

 

144

learn how to effect change that will benefit their functioning in the
long run. Nurses have a professional obligation to educate families
to become change agents.

The final recommendation for basic nursing education is the
inclusion of study about community resources. and how to access them.
In the conceptual model proposed in Chapter III of this paper.
resources were shown to be a major factor. not only in how individuals
perceived stressors. but also in how they responded to them.

Community resources can provide material assistance. educational
assistance. and social support. all three of which are critical to
successful adjustment and adaptation. Many community resources are
listed in telephone books under "Social Service Agencies". Students
in a classroom could be assigned two or three agencies to research.
and then all students could present their findings to classmates.
This technique will provide students with information. and it also
teaches them to be assertive when seeking resources for clients.

Continuing education for nurses is the second area of educational
concern for the CNS in advanced practice. For nurses who have already
completed their basic education. the CNS can offer to serve as a
consultant for staff nurses. providing inservice on the long-term
benefits of learning stress management. This information must be
presented as a benefit both to nurses and to their clients. Actual
techniques (time management. relaxation techniques. and values

clarification. for example) should be taught. and opportunity for

 

145

practice provided. Because these nurses should realistically teach
these same skills to clients. the CNS must also provide the necessary
information about teaching-learning theory. so teaching sessions will
be effective.

Another aspect‘of continuing education for nurses to consider
would be the possible presence of student nurses in client care
settings. If the care setting is affiliated with a nursing
educational institution. students could be encouraged to provide staff
nurses with information about the relationship between stress and
health. Planning and teaching inservice sessions could be
incorporated as a clinical requirement in meeting the objectives of
the course.

The CNS could approach professional nursing organizations. and
work with them to provide seminars and workshops about stress and
health for practicing nurses. Because of her advanced education. the
CNS is well prepared to plan and coordinate these learning
experiences. as well as to actually provide the teaching. Emphasis
should be placed on stress management as beneficial both to nurses and
to their clients.

The third area of educational focus for the CNS is at the
community level. Obviously. the CNS can offer her services to various
organizations that express an interest in the relationship between
life stress and health. Many workplaces now include stress management

programs as a benefit for their employees. The CNS could perhaps

146

design a stress management program for employees. and contract to
provide this benefit in the workplace.

Schools represent another important place for intervention by the
CNS. Since this scholarly project is designed to study the effects of
stressors on the health of children. the author proposes that the most
effective educational intervention overall would be to go into the
early grades. and teach young children stress management techniques.
Perhaps teaching stress management as a lifestyle. rather than a
panacea. would provide a better outcome than is currently being seen.
Incorporation of stress management as an attitude at an early age
would allow it to become an inherent part of living. rather than a new
skill to be learned later in life.

Implications for Nursing Research

 

The conceptual model that was presented in Chapter III has not
been tested as of this writing. It is based on systems and stress
adaptation theories. both of which have been researched extensively.
In reviewing research which was pertinent to the proposed model. the
author found that. although research was plentiful. there were
methodological problems which limited application of the findings.
These weaknesses become the basis for many of the authors's
recommendations for nursing research.

Several studies were found which purported to report how children
responded to the stressors of chronic illness (Cowen et al.. 1985;

Stullenbarger et al.. 1987; Venters. 1981). However. after studying

147

these reports. it was found that. in the majority of cases. children
were not directly queried about their own perceptions. Instead.
parents. usually the mother. were asked how children responded to the
stressors. Obviously. research has to get at children's perceptions
in order to truly understand how they are affected by the stressors of
chronic illness. This is not an easy task. given the varying
cognitive levels of children of different ages. Perhaps the first
step for researchers in this area is the development of data
collection tools which would reliably elicit pertinent data from
children themselves. Barnes. Peek. and Spence (1987) have developed a
hassles measurement tool for children. Although their tool has had
limited use. it shows promise of being able to accurately measure
hassles in children.

Another methodological problem which was commonly noted in the
research literature was the lack of longitudinal data collection.
Data which is collected in a cross-sectional manner. does not provide
information about the changes that evolve related to stress responses
as children pass through various developmental stages. Longitudinal
studies are time consuming and expensive. but they provide the best
data for researchers interested in how children and their families
manage stressor.

All studies found by the author which were designed to measure
hassles collected data on hassles occurrence in a retrospective

manner. Clients were asked to record the incidence of hassles that

148

may have occurred as long ago as six months. Hassles are defined as
minor annoyances. and as time goes by. the reporting of their
perceptual significance is apt to be subject to recall bias. A more
accurate reporting of hassles would occur through daily. diary
recording techniques.

The tools which have been designed to measure hassles suffer from
a lack of consensus over their reliability and validity. There is
some concern that items which are labeled hassles are actually
responses of individuals to stressors. rather than primary stressors
themselves. Further research must be conducted to develop reliable
and valid stress measurement tools.

Many of the research studies reported in this paper did not
utilize control groups. Randomization of subjects was not done. so
application of findings was limited. These are two methodological
techniques which weaken the findings of the authors. Sound research
design in imperative before research is begun.

Most of the research reported findings from intact. two-parent
families. Given the trend toward single-parent families in
contemporary society. it becomes necessary for research to target this
growing population. Obviously. the stressors experienced in these
non-traditional families can differ greatly from those in traditional
families.

The Swachman scoring tool is currently used to measure health

status of children with CF. But this rating system does not truly

149

account for all the dimensions of health as defined in this paper.
Nutritional status. respiratory status. and participation in usual
activities are the only indices of health measured. Emotional status.
self-efficacy. and self-concept are among some of the additional
factors that need to be assessed. Further research needs to identity
the best way to truly measure health from a holistic point of view.
and these findings must be incorporated into the development of a
valid and reliable tool to measure health.

From the research that has been completed to date regarding the
relationship between hassles and health. there does appear to be a
positive relationship. But it is unclear if this is a function of
numbers of hassles. seriousness of hassles. or a combination of both
factors. Future research that addresses this issue can provide
further direction to the CNS who works with CF families.

Many researchers have shown that social support is very important
in reducing vulnerability to stressors. Sources of social support
have been identified. but this social support seems to be appropriate
primarily for adults. None has really tried to ascertain what
constitutes social support for children of different developmental
levels. It is often reported that peer acceptance and support is
critical for children. especially during adolescence. But are there
other sources of support that are important to children? Do children
with CF utilize social support which is different than their healthy

counterparts? What kind of social support is important to siblings of

150

CF children? These are questions that must be researched. if the CNS
is to provide clients and families with optimal social support to
buffer stressors.

It has been noted that when children with CF participate in self-
care and management of their disease at a young age. they are more
likely to conform to treatment modalities when they reach adolescence.
Children who instead have depended on their parents for CF care. are
apt to become rebellious at parental attempts to manage the disease
during the teen years. a time when separation from parental influence
is a major concern. In the past. it was thought that the best way to
encourage self-management was to provide information about the disease
and its treatment. More recent research has shown that information
alone is not sufficient to motivate individuals to self-care. If
knowledge alone is not the answer. what is the best way to encourage
early self-care activities in children when they are very young?
Further research findings are necessary to guide the CNS in this area.

In summary. the author has pointed out the need for better design
in future studies which measure stressors and their effects on
individual and family functioning. The tools which are currently in
use to collect pertinent data need to be refined. Attention must be
paid to an emerging family system. ie. the single-parent family.
Sources of childhood social support must be more clearly identified.

and strategies to motivate children toward self-care activities must

be defined.

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Questions for Future Research

 

1. Is quantity or quality of hassles the more important
predictor of health status for children with CF?

2. Is there a difference in the hassles reported by
single- and two-parent families?

3. What strategies are most effective in promoting
self-care of CF children at an early age?

4. What kinds of social support are most helpful for
CF children of various ages?

5. What characteristics most accurately reflect the
health status of CF children?

6. Do families report more hassles when children are
in remission or exacerbation?

7. What strengths are identified in CF families that
show effective functioning?

Conclusions

 

In conclusion. the relationship between the health of children
with CF and the hassles reported by their families is an important
question to the CNS in primary care. Although these children have a
shortened life span. many are living into their twenties and thirties.
Thus. they are experiencing not only the rigors of the treatment of
the disease. but they must also experience the disease as they
progress through many developmental stages. Obviously. types of

stressors will change and vary with the developmental level of the

152

children. The certainty of an early death adds a unique feature. not
seen in all chronic illnesses. To tap the ever-changing stressors
that accompany normative developmental changes. as well as those which
occur secondary to deterioration caused by CF. studies based on the
conceptual framework should be longitudinal in nature.

To date. no researcher has reported data collection from all
family members to determine if family hassles impact on the health of
CF children. In this scholarly project. the author has proposed a
framework that could provide structure for research on the topic.
Development of appropriate data collection tools remains to be
improved. both toImeasure hassles occurrence and health as defined in
this paper.

Recent research has shown that most CF families adjust fairly
well to the disease. and continue to function satisfactorily. If this
is the case. the conceptual framework could be utilized to determine
family strengths. rather than just family weaknesses. Once strengths
are identified. they become resources as families adjust and adapt to
the stressors encountered in everyday life.

In summary. the concepts of hassles. chronic illness. and health
have been explored and placed in a theoretical framework.
Significance of the subject to the field of nursing has been
established. Pertinent literature has been reviewed and critiqued.
The concepts have been addressed in terms of roles appropriate to

advanced nursing practice. education. and research.

‘ ‘ "r- ““fiy‘

153

Testing of the framework is the next step in the research
process. Validation of its construct will allow other researchers to
test the framework under different conditions. and using different
variables. It is the author's sincere hope that use of the framework
will ultimately improve nursing care of CF children and their

families.

APPENDIX A

Swachman-Kulczycki System of Clinical Evaluation

of Patients with Cystic Fibrosis

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