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This is to certify that the

thesis entitled

FREQUENCY OF LIFE EVENTS AS REPORTED BY
CHRONICALLY ILL CHILDREN

presented by

Sherrie L. Roth

has been accepted towards fulfillment
of the requirements for

Master of Scientifidegree in flunSlng__'

Major professor

Date /0//b/?X/

0-7639 MS U is an Affirmative Action/Equal Opportunity Institution

 

 

FREQUENCY OF LIFE EVENTS AS REPORTED BY
CHRONICALLY ILL CHILDREN

BY
Sherrie L. Roth

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
MASTER OF SCIENCE IN NURSING
College of Nursing

1998

ABSTRACT

FREQUENCY OF LIFE EVENTS AS REPORTED BY
CHRONICALLY ILL CHILDREN

BY
Sherrie L. Roth

The purpose of this study was to compare the frequency
and perception of reported life events experienced by
chronically ill children with the frequency and perception
of life events reported by children without a chronic
illness. A secondary data analysis was done on a data set
obtained from research conducted by P. Peek, C. Barnes, and
L. Spence, College of Nursing, Michigan State University.
The sample in the primary research consisted of 28 families
with a child between 8 and 12 years who had been diagnosed
for at least one year with the chronic illnesses and 17
comparison families with healthy children that had no known
physical abnormalities or developmental deficits. A life
events survey listing specific life events, to whom the
event had happened, and what it was like for the respondent
was given to each of the participants. Chronically ill
children reported a significantly greater number of life
events than the comparison children. No significant
difference was found in the number of negative life events
reported between the two groups. However, the chronically
ill children reported a significantly greater number of

positive events than the comparison children.

ACKNOWLEDGMENTS

, The success of this study is a result of the
contribution from a number of people. I wish to express my
appreciation and gratitude to all of those who helped.

Linda Spence's interest, patience and guidance through
the thesis preparation facilitated a smooth proposal and
thesis defense that were both educationally useful. Sharon
King and Mary Jo Arndt, the other committee members, also
gave valuable advice and guidance.

Special thanks to George Allen who gave his time during
the summer to help in the completion and understanding of
the statistical.analysis.

Susan Aula, study partner and confidant, gave
assistance in obtaining information and formatting of the
thesis as well as overall support during the process.

Thomas Porter III was extremely helpful in the writing
of the thesis through his expertise knowledge of computer
operations and graphics.

Without the assistance and support of the authors
daughters, Carrie Porter and Jennifer Sleight, this study
would not have been possible.

Finally, infinite gratitude is given to the author's
spouse, Harold Roth, for his continual support, advice, and

encouragement.

iii

TABLE OF CONTENTS

LIST OF TABLES . . . . . . . . . . . .
LIST OF FIGURES . . . . . . . . . . . .

INTRODUCTION . . .

Purpose of the Study . . . . . . . . .
Hypotheses . . . . . . . . . . . . . .
Theoretical Framework . . . . . . . . .
Conceptual Definitions . . . . . . . .

LITERATURE REVIEW . . . . . . . . .
Major Life Events in Children . . .
Life Events in Chronically Ill Children

METHODS . . . .

Research Design . . . . . . . . . . .
Sample . . . . . . . . . . . . . . .
Procedure . . . . . . . . . . . . . . .
Protection of Human Subjects . . .
Operational Definitions . . . . . . . .

Instrument . . . . . . . . . . . . . .
Data Analysis . . . . . . . . . .

LIMITATIONS . . . . . . . . . . . .

RESULTS . . . . . . . . . . . . . . .
Demographic Data . . . . . . . . . . .
Hypotheses Results . . . . . . . . . .

DISCUSSION . . . . . .

Theoretical Framework . . . . . .
Methods . . . . . . . . . . . . . .
Current Literature . . . . .

IMPLICATIONS . . . . . .

The Advanced Practice Nurse . . . . .
Nursing Education . . . . . . . . . .
Future Research . . . . . . . . .

SUMMARY . . . . . . . . . . . . . . . .

LIST OF REFERENCES . . . . . . . . . .

Appendix A: Life Experiences Questionnaire

Appendix B: UCRIHS Approval Letter . .

iv

Page

vi

p
common-i

20
20
27

31
31
31
32
33
33
34
35

35

36
36
36

39
39
42
43

43
43
46
46
47
48

52
71

Table

Table

Table

Table

Table

Table

Frequency of Reported Life Events Group

Statistics

T-test for Equality of Means of Frequency of
Reported Life Events

Frequency of Responses on Likert Scale Group

Statistics

T-test for Frequency of Responses on Likert

Scale . . .

T-test for Intensity of Positive and Negative

Responses .

LIST OF TABLES

'Intensity of Positive and Negative Responses
Group Statistics

37

37

38

38

4O

4O

LIST OF FIGURES

Figure 1: The Double ABCX Model

0 O O O O I O O O O O O O 7

Figure 2: The Double ABCX Model Revised . . . . . . . . . 13

Figure 3: The Revised Double ABCX Model, After
Diagnostic PeriOd O O I O O O O O O O O O O O 16

vi

INTRODUCTION

1 What is the relationship between children having a
chronic illness and the frequency of life events reported by
these children? Chronic illness and disability among
children in the United States from birth to 18 years is
estimated to be about 30% or approximately 20 million
children (Newacheck & Taylor, 1992; Patterson & Blum, 1996;
Velsor-Friedrich & Frager, 1990). Chronic illness is
defined as conditions with active pathology such as
diabetes, sickle cell disease, asthma and heart disease,
whereas disabilities or impairments are conditions with
stable pathology such as musculoskeletal, deafness and
hearing loss, blindness and visual impairments, speech
defects and cerebral palsy.

Mortality rates from infectious diseases of children in
the early 20th century have declined through improvements in
infectious disease control, sanitation, housing and medical
care. The prevalence of childhood chronic disease has not
decreased with evidence suggesting an increase in the
prevalence of non-life-threateninq chronic conditions such
as asthma (Newacheck & Taylor, 1992). Medical advances in
the past decades have lengthened the survival rate of
children with chronic illness. Added to coping with the
health demands associated with a chronic illness for
affected children are the stressors of life events that can
be influenced by the stress caused from the challenges
associated with chronic illness for families. Life events

1

are common situations such as the birth of a sibling,
changing schools or the death of a family member that have
been credited with affecting adjustment, adaptation and
susceptibility to diseases.
Life events that are both positive and negative require

a readjustment or change in life by an individual and result
in stress (Coddington, 1972b). ‘Stress from life events is
manifested in children both physiologically and
behaviorally. Heisel, Ream, Raitz, Rappaport, and
Coddington (1973) concluded that “children in any patient
population experience more significant life events preceding
an illness than is to be expected in a.healthy population”
(p. 121). Several studies noted the relationship between
psychological factors and changes in immune function thus
increasing susceptibility to disease (Cohen, Tyrrell &
Smith, 1991; Cohen & Williamson, 1991; Jemmott & Locke,
1984). Boyce, and colleagues (1995) conducted two studies
in a pediatric population and found that an individual's
psychobiologic reactivity influenced the incidence of
disease in high stress settings. Children who are
compromised with the presence of a chronic illness are
susceptible to effects of stressful life events on their
.disease management as demonstrated in a study using school-
age children with insulin-dependent diabetes mellitus
(Goldston, Kovacs, Obrosky & Iyengar, 1995). Bedell,
Giordani, Amour, Tavormina, and Boll (1977) studied
.chronically ill children attending a 3-week residential
summer camp and correlated the frequency of acute symptoms

2

associated with chronic illness to experiencing high levels
of stress. Compared to low-stressed children who only had
19 episodes of illness, children who were highly stressed
had 69 episodes of illness, which demonstrated that
stressful life experiences were associated with the
frequency of acute symptoms in chronic illness.

Behavioral manifestations from experiencing stressful
life events have been studied in populations of healthy and
chronically ill children (Brown & Cowen, 1989; Cowen, Corey,
Keenan, Simmons, Arndt & Levison, 1985; Dubow &.Tisak, 1989;
Jensen, Richters, Ussery, Bloedau & Davis, 1991; Loss, Beck
& Wallace, 1995; Sandler, Reynolds, Kliewer & Ramirez, 1992;
Spirito, Stark, Gil & Tyc, 1995; Tavormina, Kastner, Slater
& Watt, 1976). Chronic illness increases a child's
vulnerability to the stresses of life due to the exposure to
more anxiety producing situations that arise from
exacerbations of their disease and result in the need for
extensive medical treatment (Bedell et al., 1977).

Two factors influencing reactions to stress by healthy
children and children with chronic illnesses are family
functioning and social support systems. Social support can
function in a protective role to lessen the impact of
stressors. In some instances, children with chronic
illnesses have been shown to cope better with stressors
since these children and their families have had to adapt to
and cope with the stressors involved with their particular
disease (Brown & Cowen, 1989; Tavormina et al., 1976).
Although major life events such as the death of a parent or

3

relative cause stress to children, a number of successive
life events in a given time has been found to be more
significant and cause greater stress (Brown & Cowen,-1988;
Brown & Cowen, 1989; Coddington, 1972b). Studies have been
done to ascertain if children perceive experiences as
stressful and if their perceptions differ from the
perceptions of adults (Banez & Compas, 1990; Brown & Cowen,
1988; Yamamoto, 1979). Children's self—reports and
instruments developed to measure life events in terms of
stress showed that children differed from parents in some of
their choices for stress causing events and that events
related to parents and family functioning problems had
higher ratings.

The significance of the accumulation of life events
adding up to greater stress, that may be manifested in
children both physiologically and behaviorally, makes
studying the frequency of life events reported by
chronically ill children relevant to health care. Knowing
,the frequency and type of life events reported may give
information about family functioning and insight into coping
skills of the children (Brown & Cowen, 1989; McCubbin &
Patterson, 1983; Tavormina et al., 1976). Family routines
such as adhering to medical regimens are effected by
stressful events and family functioning may either buffer
the effects or intensify the disruptiveness of the events
(Hamlett, Pelligrini & Katz, 1992). Chronic illness
management depends on the quality of family relationships.
The child's and family's perception of the stressors

4

associated with the illness and resulting coping response
are influenced by the characteristics and strength of the
family. Coping may be manifested in the children's reaction
to life events in ways such as exacerbation of their
illness, an increase in behavior problems, or difficulty in
managing their illness as in maintaining metabolic control
in diabetics (Goldston et al., 1995; Sandler et al., 1992).
Children who report frequent life events can be targeted for
early preventive interventions to understand what the
children find stressful in order to avoid the build up of
stress and exacerbation of their disease and to identify
strategies used to cope with the stressors.
W

The purpose of the study is to compare the frequency
and perception of reported life events experienced by
chronically ill children with the frequency and perception
of life events reported by children without a chronic
illness. A secondary analysis of data collected by P. Peek,
C. Barnes, and L. Spence, College of Nursing, Michigan State
University, will be used to obtain reported specific life
events that were experienced by the families of the
chronically ill children as well as the healthy comparison
children.
Wags

Chronically ill children will report a significantly
higher number of life events than healthy children.

Chronically ill children will report significantly more
negative than positive life events.

5

W

The theoretical framework this study will be based on
is the double ABCX model developed by McCubbin and Patterson
(1983), that is an expansion of Hill's (1958) ABCX family-
stress model. Hill's original ABCX model focused on the
impact of a single stressful event on the family and the
resulting outcome whereas the double ABCX incorporates the
concept of stressor pile-up to explain the accumulation of
stressors that a family can experience with the resulting
post-crisis behavior (Day, Gilbert, Settles, & Burr, 1995).
Interaction of multiple factors that result in crisis as
well as post-crises factors influence family outcomes and
behaviors. Figure 1 is a diagram of the double ABCX model.

Factor fifl represents the stressful event or stressor.
Stressor is defined as a life-event or transition that
impacts the family to produce or potentially produce a
change in the family social system (McCubbin & Patterson,
1983). Areas of the family life that can be affected by the
change are the family's boundaries, goals, patterns of
interaction, roles, or values. Demands that are
specifically associated with the stressor event are called
hardships. The family's need for additional money,
rearrangement of work and recreational plans to accommodate
increasing medical expenses and other demands associated
with a chronic illness are examples of hardships.

Factor Hf represents the family's resources to meet the
demands of a stressor with the associated hardships
(McCubbin & Patterson, 1983). Resources, which are

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comprised of economical and psychosocial components, are
described as the family's ability to prevent an event from
creating a crisis. Economic resources may include the
family's income and material resources such as housing and
transportation. Constituting family psychosocial resources
are individual family members personality traits; the value
of family integration, most prominent being common
interests, affection, a sense of economic inter-dependence;
the family's agreement about its role structure; placing
family goals before personal ambitions; obtaining
satisfaction within the family by successfully meeting the
physical and emotional needs of its members; having
collective family goals; and adaptation or the family's
capacity to meet obstacles and shift its course of action.

Factor %f is the family's subjective definition of the
seriousness of the experienced stressor and associated
hardships and resulting impact on the family (McCubbin &
Patterson, 1983). Reflected in the meaning of the
definition are the family's values and their previous
experience—dealing with change and meeting crises. The
family can view the event as challenging or interpret the
stressor as an uncontrollable prelude to the family's
demise. Stress emerges when tension is produced by the
stressor event and associated hardships. Family stress
arises from a demand-capability imbalance in the family's
functioning. It is characterized by a multidimensional
demand for adjustment or adaptive behavior, and can vary
depending on the nature of the situation, the

8

characteristics of the family, and the psychological and
physical well-being of its members. Family distress is an
unpleasant state of disorganization that arises from the
actual or perceived imbalance in family functioning.

Factor 56 , the crisis, is the result of interactions
between the stressor event and hardships, the family's
resources, the meaning or definition of the situation to the
family, and the resulting stress or distress (McCubbin &
Patterson, 1983). These interactions influence the family's
ability to prevent the stressor event from developing into a
crisis. If the stress is such that the family is unable to
restore stability and has continuous pressure to make
changes in the family structure and patterns of interactions
a crisis will result. However, if the family restores
stability by using existing resources and defines the
situation to resist systematic changes, the stress may never
become a crisis.

Family crises evolve, are resolved over time, and may
result in multiple strains and stressors or a pile-up of
stressors referred to as the “aA” factor in the double ABCX
model (McCubbin & Patterson, 1983). Contributing to the
pile-up in a crisis situation are five general types of
stressors and strains including: the initial stressor and
associated hardships; normative transitions; prior strains;
life events' consequences resulting from the family's
efforts to cope and intra-family and social ambiguity.
Individual member's and the family system's demands are in
an ongoing state of change through the normal growth and

9

development processes. These transitions occur
independently but simultaneously with the other stressors
placing additional demands on the family unit. Residual
strain from unresolved prior stressors' hardships and
transitions may become exacerbated when a new stressor is
experienced, adding to the pile-up of demands. Behaviors
used by the family in an effort to cope with the crisis such
as a member changing roles can contribute to the pile—up of
stressors and strains. Social ambiguity occurs when
society's guidelines for managing a particular type of
stress during a family's crisis are lagging or absent
offering no solutions for the family. An important factor
in the successful adaptation to stress is the fit between
the family and the community.

Additional demands that emerge during a crisis
situation result in the development of new resources,
represented by factor “bB” (McCubbin & Patterson, 1983) .
Individuals, the family and community are strengthened when
combining existing resources with the new ones. Social
support, one of the most important components of the “b8"
factor, provides a sense that the family is cared for,
loved, esteemed, valued and belongs to a network of mutual
obligation and understanding. Social support strengthens
the family's ability to resist crisis, recover from crisis
and restore stability.

Factor fixf combines the family's definition of the
initial stressor and hardships with the pile-up of stressors
to give meaning to the total situation (McCubbin &

10

Patterson, 1983). Utilizing existing and new resources the
family estimates the necessary steps to bring balance back
to the family system through redefining the situation.
Redefining requires clarification of the issues, hardships
and tasks that makes them more manageable and responsive to
efforts of problem solving. When the family redefines the
situation by viewing it as a challenge, an opportunity for
growth, or endows it with special meaning such as “God's
will”, family coping and adaptation is facilitated.

Coping is the family's responses to the interaction of
the pile-up, their resources and their definition of the
situation (McCubbin & Patterson, 1983). Efforts to cope may
be aimed at eliminating or avoiding stressors or strains;
managing the hardships; maintaining integrity and morale;
acquiring or developing new resources to meet additional
demands; and/or restructuring the family system for demand
accommodation. Coping entails simultaneous management of
multiple stressors and strains or pile-up of stressors that
requires compromising and acceptance of the best possible
outcome.

Factor 50? is the outcome of the family's response to
the situation or the level of adaptation to the situation
(McCubbin & Patterson, 1983). The goal is to eliminate
disruption in the family system and restore stability.
Accomplishing homeostasis provides new opportunities for
growth and development within the family. Elements to be
considered for the outcome of family adaptation are:
individual family members maintaining balance within the

11

family system; the family maintaining balance within the
community by balancing work and home commitments; and the
family maintaining coherence by minimizing the discrepancy
between resources and demands.

Family adaptation is the central concept that describes
the family's post-crisis adjustment and efforts to return
balance and stability of family functioning. There is a
continuum of outcomes, with bonadaptation at the positive
end of the continuum and maladaptation at the negative end
of the continuum. Family bonadaption is characterized by
the family maintaining or strengthening its integrity,
maintaining independence and control over the environment
and continuing promotion of development of individual
members as well as the family unit. Maladaptation is at the
opposite end and is characterized by family integrity
deterioration, loss of family autonomy, and deterioration or
curtailment of individual member and family development.

The double ABCX model was developed to study family
stress. Family stressors and hardships related to the
ongoing chronic illness of a child impact family functioning
and also influence the chronically ill child's functioning.
Variables that impact the functioning of a family with a
chronically ill child are illustrated using each factor of
the double ABCX model. Figure 2 is a modified diagram of
the double ABCX model with the above variables applied.

Diagnosis of a chronic illness can be viewed as the
initial stressful event, factor fifl. Chronic illness has
demands associated with it that are ongoing and changing.

12

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For example, some of the ongoing demands would include
treatment requirements, symptom management and functional
limitations. Exacerbation of the illness can occur if the
child becomes ill after exposure to infection such as an
upper or lower respiratory illness, thus resulting in
changes of treatment regimens, symptom management and
further functional limitations. Time requirements for
treatment may interrupt the child's social life as well as
that of other members in the family.

Resources of the family, factor Rf, are influenced by
the demands of chronic illness and affect each member of the
family. Economic demands increase from cost of medications,
treatments and other medical expenses such as equipment,
physician visits, therapy and hospitalizations (Patterson &
McCubbin, 1983). Changes in the family's usual lifestyle,
such as affordability of recreational activities and time
spent with members by the parent earning the income, can
result. The working parent may have to take an additional
job or work longer hours to meet the financial demands while
the other parent may have to assume the role of caretaker.
The caretaker can become over protective reducing the
child's development of independence which can impact the
child's self esteem (Patterson & McCubbin, 1983). Siblings
may become competitive for the parent's time and blame the
chronically ill child (Patterson & McCubbin, 1983).
Emotional support impacts the chronically ill child's own

resources such as self esteem.

14

The meaning of the chronic illness diagnosis to the
family and the affected child is factor Rf. One perception
that occurs is the parents-and child feel they could have
done something to prevent the disease (Silverstein &
Johnson, 1994). Parents as well as some children may
experience grief and sadness over the loss of health and
carefree lifestyle. The seriousness of the disease's impact
on the child's daily activities or functioning influences
the family's and child's definition of the event of being
diagnosed with a chronic illness.

Interactions between factor as, the stressors
associated with the initial diagnosis and the period
immediately following; factor Rf, existing resources of the
family and the child with a chronic illness; and factor Rf,
the family's and child's perception of the seriousness of
the disease and impact on the child's lifestyle can result
in a crisis, factor 56. Behavioral or emotional problems
can occur with the child using the chronic illness as a
manipulative tool (Silverstein & Johnson, 1994). There may
be displays of anger caused by the disruptiveness of
treatment demands. Anxiety about disease management can be
manifested in behavior and can impede knowledge acquirement.
Self image of being different can lead to non-adherence to
regimens. Return to normal functioning usually occurs
within 9 months of the.diagnosis (Rubin & Peyote, 1992).

The present study will focus on the second half of the
model, ongoing adaptation after the diagnostic period
(figure 3). Chronic illness with the associated strains and

15

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hardships of disease management added to the normative
developmental transitions and life events experienced by the
family can cause a pile-up of demands, factor “aA”.
Treatment and symptom management are daily, ongoing factors
which influence intra-family relationships, time management,
financial responsibilities and other stressors mentioned in
the “a" factor. Normal developmental changes, such as
starting a new school, or new grade in school, developing
peer relationships, physical and cognitive development as
the child ages can be a source of stress that adds to the
demands of the chronic illness (Patterson & McCubbin, 1983).

New resources must be developed and acquired to meet
the demands associated with the chronic illness and the
normative changes, factor “bB”. Ongoing education of the
child about the chronic illness and associated treatment
required will increase his/her self esteem and help to
develop a sense of mastery over the illness (McCubbin &
Patterson, 1983; Patterson & Blum, 1996; Rubin & Peyrot,
1992; Silverstein & Johnson, 1994). Finding community
resources and medical specialists is required for the
child's management and adjustment to the disease. Social
support of friends and relatives outside the immediate
family are important resources for maintaining the child's
sense of well-being.

Factor “cc” combines the definition of the chronic
illness with the stressors associated with normative,
developmental changes, and those associated with life
events. The family and child may initially see the illness

17

as hopeless, shameful, overwhelming and beyond his/her
ability to manage. Family support contributes to the
definition given and dealing with the stressors of life
events. Time helps the family and child to redefine the
event of a chronic illness and to utilize existing and new
resources to restore stability to his/her life.

Coping strategies are used by the family and child to
bridge the interaction between the “aA” pile-up of stressors
with “bB” existing and new resources and “cc” the perception
or definition of the situation. Adaptation is the outcome
of the family's ability to cope. An example of inadequate
coping efforts is overprotection by the care giving parent
that then limits the child's ability for independence and
results in competition among the other siblings and spouse
for attention.'-Reactions of the child can include
withdrawal from social involvement out of shame or
embarrassment and denial of the reality of the chronic
illness thereby ignoring special physical needs (Patterson
McCubbin, 1983; Rubin & Peyrot, 1992). An example of
positive coping behavior is an attempt by the family to
normalize their life through understanding the illness.
Family emotional support as well as social support from the
community for the child and family is instrumental in
achieving bonadaptation.

: l J E E' 'l'

Chronic illness is characterized by the need for
specialized medical care, management of daily treatment
regimens or activities of daily living which may require

18

extra skill and time, frequently shortened life expectancy,
and no known cure or uncertain prognosis (Patterson &
McCubbin, 1983; Patterson & Blum, 1996; Stein, 1983).
Chronic illness is a life long condition during which a
child may become better or worse at-times but is never a
healthy child (Patterson & McCubbin, 1983). Cystic fibrosis
is a lethal genetically caused example of a chronic illness
that profoundly affects the daily lives of children and
their families. Although the disease is fatal, medical
advances have prolonged the life span to a mean age of 29
years (Ievers & Drotar, 1996). Asthma and diabetes are
examples of chronic illnesses that also impact the daily
life of children but are associated with a relatively normal
life span. Chronic illness differs from acute illness in
that during the course of‘a chronic illness there are
periods of acute exacerbations that require intensive
medical treatment but the child with a chronic illness lives
at home and depends on the family for doing treatment and
.care. Responsibility for treatment of an individual with an
acute illness resides with the physician and hospital staff
since acute illness usually requires hospitalization.

Life events have.been credited with affecting the
adjustment, adaptation and susceptibility to diseases. Life
.events are common situations that require a change or
readjustment in an individual's ongoing lifestyle
(Coddington, 1972b; Kale & Stenmark, 1983). These events
can be undesirable, positive or ambiguous yet seen as stress
producing since change is involved that interferes with

19

normal activities. -Stress is an individual's pattern of
physiological and psychological reaction in response to
. stressful conditions or stressors (Rabkin & Struening,
1976). ‘Although stress has been credited with causing
illness, a person's perception or appraisal of the
significance of a stressful event as potentially harmful,
challenging or threatening influences the resulting outcome.
LITERATURE REVIEW

This review of literature will include studies
correlating perception of stressors and life events to
symptomatology of illness. It will also review research
examining stressors and life events in chronically ill
children with particular focus on cystic fibrosis, asthma
and insulin dependent diabetes mellitus in children.
M j I'E E l . il'Ji

Numerous studies have looked at children's perception
or appraisal of the stressfulness of life.events and sought
to determine if their appraisal differs from adults. Many
of the studies make reference to the two classic studies
conducted by Coddington (1972a; 1972b). In the first study
(1972a), using the Holmes and Rahe method modified to
children, teachers, pediatricians and mental health workers
were utilized to determine the significance of life events
for children from four age groups: preschool, elementary,
junior and senior years of high school, and to establish the
relative value and rank order of the events. Items to be
rated for importance were chosen from literature and
previous experience with children. There were no

20

significant differences among the respondents in the
assignment of rank order to the items resulting in relative
agreement about the importance of all items. Attaching
value to items in regard to the effect or the requirement
for readjustment from a given life event differed
statistically between the teachers and health care
professionals. Significance attached to life events
differed within the three groups depending on the length of
experience the individuals had in working with children and
values attached to the items for each age group. Values
attached to the items or events are called Life Change Units
and can be summed to determine the amount of social-
psychological readjustment a child has undergone during a
specific time period. Since the difference between the
teachers and two health care professional groups was small,
this instrument is viewed as a good measurement device of
environmental factors that impact children, can be completed
in a few moments, and can be done without interviewer bias
and subject bias if the time period is carefully designated
to minimize recall inaccuracies. Coddington reported two
psychiatric clinical cases using the instrument and in each
case the client had undergone life changes amounting to
greater than 300 Life Change Units. Limitations of this
study include the discrepancy in number of years of
experience in working with children of the participants and
that the values attached to life events were obtained from
the opinion of adults and not the children themselves for
whom the instrument was intended.

21

In the second study Coddington (1972b) used a life
event record with the Life Change Units to gain
understanding of the amount of social readjustment from the
environment that is required for healthy children. The same
four age groups in the above study were used. Forms for
preschool and elementary school children were completed by
the parents while forms for juniOr high and senior high
students were completed by the subjects themselves. Older
children were found to have a greater number of life events.
At age 12-14, with the advent of puberty and adolescence,
children risk the occurrence of more life events that
require more social readjustment.. Adjusting to external
environmental changes is a complex combination of
biological, immunological and emotional components that
impinge on health depending on one's ability to adjust.
Coddington cited a case involving an event for an adolescent
girl that by most would have been viewed as good but was
stressful enough for her to attempt suicide, demonstrating
that both had and good events can be stress provoking.
Children who had been hospitalized within the past year
accumulated a higher score in Life Change Units indicating
that a large readjustment requirement may be significant in
the case of physical illness. Over 3500 healthy children
were surveyed in this study for the number of events
requiring social readjustment that had occurred in the
preceding year. Based on the large number of participants,
this method and the Life Event Record with Life Change Units
would be applicable in the study of all children, both

22

healthy and ill, for understanding the impact of life events
on health status. It should be noted that responses of
preschool and elementary school age children are from
parents and not the children themselves. Although the
occurrence of life events was reported, the number of times
an event occurred to a given subject within the year was not
evaluated. This author also questions the accuracy of
recall over a year's time by the children.

Yamamoto (1979) studied 367 children in the fourth,
fifth and sixth grades for perception of upsettingness of
and previous experience with 20 life events from review of
literature and teacher's suggestions that were considered
potentially unpleasant for children. Classroom teachers
presented the events to the.children who then rated the
events on a Likert scale for upsettingness and indicated
whether an event had been personally experienced. Some
experiences such as loss of sight and pants wetting,
although infrequently experienced, were rated as very
upsetting. Common events such as parental fights were seen
as more stressful than the birth of a sibling, contradicting
the belief of professionals. Experiences that coincided
with evaluation by professionals as upsetting were the loss
of a parent and academic retainment. Yamamoto concluded
from this study that constructing a meaningful life event
scale for children is feasible and subcultural variations
need to be studied. This study is limited to children in
the age ranges found in those three grades and can not be
applied to other age groups.

23

Another study by Brown and Cowen (1988) also focused on
children in fourth to sixth grades to judge upsettingness of
events and frequency of event occurrence in the children's
lifetimes. Responses were obtained from the children
themselves. Events judged to be highly upsetting by
children, like adults, were serious injury to or death of a
parent and parental divorce. Birth of a sibling was found
to be the least upsetting in this study as in Yamamoto's
(1979) suggesting that children's perception of
stressfulness differs from adults. Frequency of events
varied according to severity of the event. For example,
events such as being unable to watch a favorite show on TV
or receiving a bad mark on a test occurred more often than
death of a parent or school suspension. The average number
of stressful events reported occurring in a lifetime was
seven. Conclusions of this study are limited to children in
the age ranges studied and some events were omitted because
of their powerful effect on children. Insight into the
meaning of stressful life events to children is gained from
the study since the children rated the upsettingness of an
event on a Likert scale. Comparing the children's reports
of event occurrence with those of knowledgeable observers
such as parents and teachers would be more reliable in
determining accuracy for recall of the children's reactions
at the time of occurrence.

Brown and Cowen (1989) found in their study of children
in fourth to sixth grade that cumulative stressful life
events correlated with less competency and more serious

24

school adjustment problems. The children who had
<experienced many stressful events, by self-report and
teacher's report, identified behaviors that were different
from children who had experienced few stressful events.
Another purpose of this study was to assess the nature and
breadth of children's support network using a 6-item
questionnaire. Children rated their self-adjustment using a
35-item Child Rating Scale and indicated the extent that
.each item applied to him/her. Through the children's self-
reports, support was perceived to contribute positively to
adjustment. Teachers used a two-part Child Rating Scale to
describe children's school adjustment problems and assess
school competencies. When teacher ratings for adjustment
criteria were used, an inconsistency compared to the
children's self-reports was found in the relationship
between the support and adjustment. More important than
support network size for correlation between support and
adjustment may be the support available during the
occurrence of a stressful event and satisfaction with that
support, not measured in this study. However, there were
significant statistical interactions found between the
number of events experienced and level of support when the
teacher ratings of child adjustment criteria were used. In
the low support groups the total number of events
experienced had a positive correlation with problem
behaviors and a negative correlation with competencies.
Banez and Compas (1990) studied students in the fourth
and fifth grades in two elementary schools to correlate

25

self-reported daily stressors with reported daily stressors
of their parents. Internalizing emotional/behavioral
symptoms of anxiety and depression associated with the
stressful events were assessed as reported by the children
themselves and compared with reports by their parents.
Children's self-reported daily stressors were significantly
related to self-reported problems of depression indicating
that daily stressors are related to emotional distress in
young children. Father's reports of the problems coincided
with the children's but the mother's reports did not.
Parents' daily stressors were related to children's self-
reported symptoms of anxiety. Conclusions of this study are
.limited to children in the age groups studied and findings
can not be generalized to other populations because of the
small sample size. Note that italso raises question about
using parental report for children's life events and their
stressfulness. A longitudinal study rather than cross-
sectional study may be more useful. Assessing stress
related externalization problems would also be useful. This
study revealed the value of the father's observations when
conducting studies of children.

Perception of stressful life events has been associated
with symptomatology of illness in healthy as well as
chronically ill individuals. A correlation between the
increase of disease symptoms and stress was noted in
DeLongis, Folkman and Lazarus (1988) study of healthy
adults. In Coddington's (1972b) study of healthy children,
children who had accumulated a high score of Life Change

26

Units from experiencing stressful events had also been
hospitalized. Loss, Beck and Wallace (1995) studied third
and sixth grade children using the Coddington Life Event
Record to measure the accumulation of Life Change Units over
the past year. The instrument was administered to the
mothers and a modified understandable version that measured
the positive and negative impact of life events was
administered to the children. An evaluation of depressive
symptoms was also done using the Children's Depression
Inventory (CDI). Children with high scores on the CDI
reported significantly more life events during the past year
and the findings were corroborated with the mother's
reports. Children in the third grade were less accurate in
.recalling events that occurred within the 12 month period.
Generalization to other populations can not be done because
the sample consisted of mostly Caucasian children in two age
groups. These studies are examples of the impact that
stress from the occurrence of frequent life events has on
the health and well-being of healthy individuals.

Chronic illness and the associated burdens increase an
individual's vulnerability to stress from life events. A
study by Heisel et al. (1973) mentioned above was done on an
inpatient pediatric population and revealed a considerably
higher incidence in the frequency and/or severity of life
events prior to the onset of illness than found in a
population of healthy children. This was accomplished by
surveying the parents using Coddington's Life Event Record

27

(Coddington 1972a, 1972b) for events that had occurred in
the year preceding the onset of illness or admission to the
hospital. Results from the parental reports were compared
to scores of Life Change Units obtained from the survey of
healthy children in Coddington's study (1972b) and were
found to be statistically significant in the frequency and
number of events experienced by the hospitalized children.
The participants were limited to five distinct patient
populations and selection of the participants was not
randomized.

Bedell et al. (1977) also found an increase in episodic
events of illness in chronically ill children who had
experienced high levels of stress indicating that the
frequency of acute symptoms related to chronic illness was
associated with life experiences. Determining stress levels
was achieved by surveying the children using Coddington's
Life Event Record to assess the number of Life Change Units
accumulated during the year preceding their camp experience.
When the results of life stress scores were compared with
normative data, the high stress group had experienced above
average levels of stress. As previously mentioned above,
the impact of stress was noted in the incidence of episodic
events during the camp experience. Children in the high
stress group perceived themselves as having~more behavior
problems and less ability in.schoolwork. Although the
results were significant, the sample size was small and the

accuracy of recall by the children is questionable.

28

A longitudinal study by Goldston et al. (1995) of new
onset insulin dependent diabetes mellitus in school-age
children surveyed the children and at least one parent
separately about their lives, psychiatric symptoms and
diabetes care. Utilizing Coddington's Life Events Record
(Coddington 1972a, 1972b) parents were asked to list events
that had occurred over a specific time interval to determine
if metabolic control over time was affected by the number of
undesirable life events or the readjustment required by the
occurrence of life events. Findings from the parents'
responses suggested-that the overall stress of life events,
both positive and negative, that require a life change was
relevant in the patients' attempts to maintain metabolic
control. Greater life stress was associated with a lack of
adherence to the medical regimen thus affecting metabolic
control. These findings of the relationship between
metabolic control and life stress can be generalized to
children during the initial years of diabetes mellitus but
further research is needed for generalization to other
populations with insulin dependent diabetes mellitus.

Childhood chronic illness within the family context and
the relationship of stressful life events, family
functioning and social support were examined in a study by
Hamlett, Pellegrini and Katz (1992). Children ages 6 to 14
with asthma and diabetes and their mothers as well as
children of the same ages without significant illness and
their mothers participated in the study. Chronically ill
children experienced more stressful events over a 12 month

29

period than children in the control group as reported by
their mothers, not the children themselves. Family
functioning did not differ in the families of chronically
ill children compared to the families of healthy children
indicating that the families function well while coping with
the demands of illness. Mothers of children with asthma
reported less adequate social support and greater incidence
of internalizing, anxious behaviors of the children
suggesting the importance of social support for families
with chronically ill children and the impact the mother's
perspective has on the child. This study is limited by the
small sample size.

In summary, research has found that the occurrence of a
life event, whether it is perceived as good or bad, has been
associated with stress and the onset of illness or the
exacerbation of chronic illness. It has been found that
children with a chronic illness report more frequent
occurrences of life events. Perception of the stressfulness
of life events has been found to differ between adults and
children. Researchers have found the validity in children's
self-report of life events. However, most of the research
on life events has been conducted using instruments in which
the value of a life event has been rated by adults. Parents
or the children have rarely been asked to rate the

stressfulness of events themselves.

30

METHODS

Weigh

A secondary analysis was done on a data set obtained
from research conducted by P. Peek, C. Barnes, and L.
Spence, College of Nursing, Michigan State University for a
study examining family adaptation to chronic childhood
illness. The primary research is a descriptive, cross-
sectional, quasi-experimental design comparing families that
have a child with a chronic illness with families that do
not have a child with a chronic illness.
Sample

The sample consisted 28 families with a child between 8
and 12 years who had.been diagnosed for at least one year
with the chronic illnesses of asthma (8 families),
congenital heart disease (6 families), cystic fibrosis (8
families) and insulin dependent diabetes mellitus (6
families), and 17 comparison families with healthy children
who had no known physical abnormalities or developmental
deficits. Four families were randomly selected from each of
the four chronic illness categories for purposes of
matching. Thirteen of these families were matched with 13
of the comparison families. Criteria used for matching
consisted of: age, sex and birth order of the target child;
number of parents in the home; approximate family size and
income. Four non-randomly selected chronic illness families
that were evenly distributed across the diagnostic
categories were matched with the other four comparison
families with the final sample consisting of 160 subjects

31

including parents, siblings and target children.

Recruitment of the families with a chronically ill child was
done through the pediatric subspecialty clinics in the
Department of Pediatrics and Human Development, Michigan
State University. The study was limited to these clinics in
an effort to control the philosophical approach to the
medical management of chronic childhood disease by
encouraging patient and family participation in disease
management.

All families meeting the criteria who came to the
clinic successively were asked to participate since the
number of chronically ill children in each diagnostic
category was limited, making this a convenience sample.
University, neighborhood and community agency announcements
were used to recruit the comparison families. No
significant differences between chronic illness and
comparison families in characteristics of the target
children, family characteristics, or father characteristics
were revealed in Chi square analysis. Mothers in the
chronic illness families had less education and were less
likely to work outside the home than the mothers in the
comparison families (Spence, 1992).

Procedure

Chronically ill families and comparison families
meeting the criteria were sent letters explaining the
research and inviting participation. Enclosed in the
letters was a return postcard indicating willingness to
participate and requesting available times for participation

32

and information about the composition of the family. A
follow-up phone call was made to all respondents by the
investigator to answer questions and schedule home visits at
a time when the entire family was available. During the
home visit the study was explained to all of the family
members, questions were answered, informed consent was
obtained, sociodemographic information from each family was
obtained and illness demographic information from the
chronically ill families was obtained. The investigator
gave each family member the appropriate instruments to
complete, answered questions and assisted the younger
children in completing the instruments.

E l l' E H 5 l' l

The present project was approved by UCRIHS (# 98-277).
The original study was approved by UCRIHS. All participants
in the original research gave informed consent and
participated willingly. The investigator for this study
received the data on a computer disk with no identifying
information.

i l' J E E' 'l'

Demands was operationally defined as the frequency of
life events that occurred in the family as reported by the
child on the Life Experiences Questionnaire.

Perception of life events was operationally defined as
the interpretation by the child, as measured by the child's
responses on the Life Experiences Questionnaire, of events
as either positive or negative on a Likert scale indicating
what the event meant to the child.

33

Instrument

The instrument used for the data base that this author
analyzed was the Life Experiences Questionnaire (LEQ) that
combined the Life Experiences Survey (LES) from Sarason,
Johnson and Siegel (1978) with questions from the Children's
Life Event Record (Coddington, 1972a, 1972b), both of which
are established and frequently used instruments.' Questions
on the instruments requested information about family life
events that had occurred within the past 6 months, to whom
the event happened and what the event was like for the
respondent. The impact of the event was rated on a 5 point
scale from Very Bad to Very Good. The children's form had
larger print and the wording was adapted for easier reading.

The LES is comparable with other life events
questionnaires in reliability and validity (Sarason et al.,
1978). Although life events items collectively provide a
quantitative measure of major stressors, individually the
life events are not necessarily stable or highly inter-
related (Spence, 1992). Therefore, internal consistency is
a less meaningful measure of reliability with life event
measures than test-retest reliability done over time to
examine event consistency. Sarason et al. (1978) reported
test-retest reliabilities at 5- and 6- week intervals to be
.19 and .53 for the positive change scores; .56 and .88 for
the negative change scores; and .63 and .64 for the total
change scores. A number of outcome measures have

demonstrated the validity of the LES.

34

Coddington's (1972a; 1972b) Children's Life Event
Record was the first instrument designed for children's
assessment of life events and is used most often. Content
validity is demonstrated by use of an expert panel to
establish relative values and rank order of events to be
used in the instrument that occur in the lives of children
and were chosen from the literature and work with children.
The children were able to understand and answer the
questions when administered the instrument.

Waist

Raw data from the primary research was analyzed using
descriptive statistics and a t-test. Descriptive statistics
were used to examine the frequency of life events reported,
and whether the life events were perceived to be positive or
negative. The.t-test was used to determine if there was a
significant difference between children with a chronic
illness and healthy children in the frequency and perception
of life events reported.

LIMITATIONS

Limitations of the study included the use of a small
sample size and limiting the age to children 8 to 12 years.
This limits the ability for generalization to younger and
older populations and populations with different
demographics. Control of the medical management style used
warrants further research for the effect the style has on
family adaptation to chronic childhood illness. A

longitudinal study would provide more accurate information

35

about family adaptation as an on-going process and
facilitate prediction of family functioning at a later time.
RESULTS

Demegranhiuata

There were 28 chronically ill children and 17
comparison children ranging in age from 8 to 12 years with a
mean of 9.93 years for the chronically ill children and
10.45 years for the comparison children (Spence, 1992).
Thirteen of the chronically ill children were female and 15
were male. Eight of the comparison children were female and
9 were male.
W

Results in this section were obtained from the
chronically ill childrenis and the comparison children's
self-reported answers to a questionnaire about the frequency
of life events experienced and the meaning of the event for
the respondent. In the first analysis, the number of yes
responses to the occurrence of each a life event were
counted, totaled, and analyzed using a t-test (Table 1 and
2). Chronically ill children reported a significantly
greater number of life events than healthy children. A mean
of 9.00 events was reported by the chronically ill children
and a mean of 5.35 events was reported by the healthy
children (p s .05) supporting the first hypothesis, that
chronically ill children would report a significantly
greater number of life events that healthy children.

No significant difference was found in the number of
negative life events reported between the chronically ill

36

Table 1.
E E E l i I'E E l 3 S! l' l'

 

 

N Mean Std. Deviation
Chronically Ill 28 9.00 4.93
Healthy 17 5 . 35 4 . 42

 

 

 

 

 

 

 

 

 

Table 2.

 

 

 

t-test for Equality of
, 'Means
t df Sig. (2-
tailed)
2.500 43 0.016*

 

 

 

 

 

 

*p s 0.05

 

children and healthy children. Chronically ill children
reported a significantly greater number of positive events
than healthy children. Therefore, the second hypothesis was
rejected.

The children's perception of life events was further
examined using two methods. First, the number of responses
to each rating of the Likert scale were counted, totaled,

and analyzed using a t test (Tables 3 and 4). There were no

37

Table 3.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Likert Scale N Mean Std.
Ratings Deviation

Very Bad (1) Chronically Ill 28 3.18 3.09

Healthy 17 2.24 1.82

Bad (2) Chronically Ill 28 1.12 1.17

Healthy 17 0.76 1.09

OK (3) Chronically 111 28 2.68 2.82

Healthy 17 2.59 3.47

‘ Good (4) Chronically Ill 28 0.61 0.79

Healthy 17 1.12 1.22

Very Good Chronically Ill 28 3.86 3.70

(5) Healthy 17 1.53 1.74

Table 4.

T:test_f9r_Ereauensx_9f_Respouses_0n_Likert_Scale

 

 

 

 

 

 

 

 

 

 

 

 

 

 

t-test for Equality of Means
,Likert Scale ' t df Sig.
Very Bad (1) 1.140 43~ 0.260
Bad (2) 1.284 43 0.206
OK (3) 0.096 43 0.924
Good (4) -1.712 43 0.094
Very Good (5) 2.429 43 0.019*
*p s 0.05

38

 

significant differences found in the number of responses for
the “very bad” to “good” ratings. However, “very good” had a
significantly greater number of responses by the chronically
ill children (mean of 3.86) than the comparison children
(mean of 1.53, p s .05).

Measuring the intensity of the reported Likert scale
ratings provided a measure of the subjects perception of the
demands associated with positive and negative life events.
This was the second analysis done (Tables 5 and 6). A sum
of the value of the positive responses “good” and “very good”
was done and then analyzed with a t-test. The same process
was repeated for the negative responses “very bad” and “bad”.
Chronically ill children responded positively 27 times with
a mean of 4.8162 while comparison children responded
positively 13 times with a mean of 4.5466 (p s .05).
Chronically ill children responded negatively 26 times with
a mean of 1.3780 and comparison children responded
negatively 16 times with a mean of 1.3393 (p 2 .05).
Chronically ill children rated positive life events
significantly more positively than the healthy children and
there was no significant difference between the groups in
perception of negative life events.

DISCUSSION
W

This study focuses on the “aA” factor (demands) and “cc”
factor (perception of demands) of the revised Double ABCX
model (Figure 3). Both of these factors occur post-crisis
and for the chronically ill children, one year after the

39

Table 5.

. . . .
é?If95fP¥-9z-E95l3ll3-and—H3933l¥3—B§5993535-91999

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Life Events N Mean Std. Deviation
PLEI Chronically Ill 27 4.8162 0.2945
Healthy 13 4.5466 0.3274
NLEI Chronically Ill 26 1.3780 0.3829
Healthy 16 1.3393 0.4353
Table 6.

 

 

 

 

 

 

 

 

 

 

 

t-test for Equality of Means
Life Event t df Sig.
PLEI 2.616 38 0.013*
NLEI 0.302 40
' 0.764
*p s 0.05

 

diagnosis of a chronic illness. Factor “aA” is concerned
with a pile-up of stressors from the demands associated with
a chronic illness, normative developmental changes with
associated demands, and the occurrence of life events. It
is not surprising to note the greater frequency of life
events reported by chronically ill children since the added
demands associated with a chronic illness increase the

demands on the family as a whole.

40

Factor fin? is the family's perception of the situation
after defining the initial stressor and hardships with the
pile-up of stressors. The expected outcome would be that
chronically ill children would perceive the greater
frequency in the occurrence of life events as well as the
individual events more negatively giventhe stressors
associated with having a chronic illness. Perhaps
perceiving that the occurrence of the life event is directly
related to the chronic illness would also be thought to
result in a tendency toward more negative perceptions of
events. The positive intensity of life events was
significantly greater for chronically ill children than
healthy children.. That children with the added burdens
associated with a chronic.illness have more overall positive
perceptions of life events may.be associated with the
resiliency of children. Since the occurrence of any life
event is associated with stress, it was unexpected that the
chronically ill children would report a significantly
greater number of “very goodF2ratings on the Likert scale.
Higher intensity of positive events is somewhat related to
the greater number of positive events reported by the
chronically ill children but may also be interpreted as a
result of the children's coping abilities and developmental
level or maintaining homeostasis within the family. Events
such as hospitalization or exacerbation of a disease may be
perceived negatively by adults. The child may perceive
hospitalization as a means to relieve symptoms while
providing more individual attention from the parents.

41

Parents perception of a situation, especially the mother's,
influence the child's perception. Adaptation by children
has been associated with family functioning, support, and
redefining of events by the family in a positive manner.
Mathndfi

Characteristics of the original study that may
influence data interpretation will be discussed in the
section. First, the sample size is small consisting of 45
subjects with 28 chronically ill children and only 17
comparison children. For the purpose of comparing
characteristics of the two groups, homogeneity in the
demographics of income, amount of work outside the home, and
characteristics.of the target child and family is
beneficial. However, using a homogenous sample limits
generalizing the results to other groups. Education level
and a greater number of outside employment in professional
positions by mothers in the comparison group may influence
the results regarding the mothers' coping skills although
the literature does not indicate that coping is related to
education level.

Cross-sectional data collection of retrospective
information may influence the results. Timing and sequence
of the events may influence the child's perception of the
event since children are fairly resilient but the literature
does make reference to problems associated with an
accumulation of stress from a pile-up of demands.

Developmental level of the child and recall of the emotions

42

associated with events at the time of occurrence may be
influenced by the time of data collection.
CurrenLLiterature

The first hypothesis was supported in this study.
Chronically ill children reported significantly more life
events than healthy children. This is also supported by the
literature (Goldston et al., 1995; Hamlet, Pelligrini &
Katz, 1992). There is little research that utilizes
children themselves to rate the stressfulness of a life
event. Many researchers have used professionals and parents
to determine the perception by children of a life event.
Research has revealed that perception of events differs
between adults and children. This study recognized the
validity in children's self-reports of the occurrence of
life events and their perception of the events. Finding
more positive numbers of events reported and more positive
perception of reported events was not the expected outcome
stated in the second hypothesis. The literature suggests
that child's perception is influenced by the parent's
perception, especially the mother's (Hamlett, Pellegrini &
Katz, 1992). Results of this study, the reporting of more
positive events and perceptions, may be due to the family's
development of more effective coping behaviors as suggested
by Folkman et al. (1986).-

IMPLICATIONS

, W

The results of this study found that chronically ill
children report a significantly greater number of life

43

events and more events were reported and perceived
positively. Implications for the Advanced Practice Nurse
(APN) in a primary care setting related to the results will
be discussed in this section. Knowing that life event
occurrence, whether it is perceived as good or bad, is a
source of stress, is important for the APN when assessing a
child with a chronic illness. Asking the family and child
about the occurrence of life events should be included in
the assessment at each visit. The added burden of demands
associated with the disease and the tendency to experience
more life events can lead to a crisis situation. Preventing
a crisis can be facilitated by the APN through the
identification of health care and education needs and
coordinating care utilizing community resources. Educating
the child and his/her family about the disease can help them
gain a sense of control and mastery of the situation.
Ongoing education about the disease process as well as
developmental changes is important to help the family and
child maintain control. Advocating for the client by
providing information about the disease process and
management and by establishing mutually agreed upon goals
will also promote an assumption of responsibility by the
child and family for self-care activities thus enhancing the
feeling of control and mastery over the disease. Counseling
the family and child will help the APN to identify concerns
about the disease as well as provide information about the
family's perception of the situation, social support, coping
strategies, family functioning and stress producing deficits

44

such as financial burdens. Information given to the family
by the APN about coping related behaviors can give them
insight about coping skills and facilitate bonadaptation by
teaching problem solving and coping skills. Knowledge of
community resources available to assist the family in
relieving burdens is essential for the APN.

Assessing the family's and child's perception of each
life event that has occurred should also be done. It is
important for the APN to realize that chronically ill
children have an overall more positive perception of life
events. Perception is individualized according to the
meaning of the situation to the person. Establishing a
rapport and mutual trust between the APN and child is
facilitated by the APN acknowledging, inquiring about the
rationale for the perception, and accepting the child's
perception of the event rather than stating an opinion from
.having a preconceived idea of the appropriate perception.
For example, a family member going to jail may be viewed as
a positive event because having that person in the
environment may have been stressful to the other members.
Positive perception is also an indication of bonadaptation
to the demands associated with the disease. Family
functioning and support are important factors in achieving
adaptation. Characteristics and strength of the family
influence coping responses to the added demands of the

disease.

45

H . Ei !'

Nurses in all levels of education would benefit from
the knowledge that families with chronically ill children
experience more life events than families with healthy
children. Children's perception of life events differs from
adults but is influenced by the parent's reaction to an
event. Chronically ill children have a tendency toward
perceiving life events more positively, an indication of
bonadaptation to the illness' associated demands. Education
about the illness facilitates mastery in disease management
by the family and child. Assessment of the chronically ill
child should include questions about the occurrence of life
events and the child's perception of the events. Ongoing
education about the disease is important.
W

A larger, more diverse sample with a more equitable
number of chronically ill and comparison subjects in the
groups would provide more conclusive results. Conducting
longitudinal research over a designated period of time would
provide more accuracy in recall by children and provide
information about developmental levels related to changes in
perception of demands. Knowing the timing and sequence of
events would provide information about accumulation of
stress and resulting perception. Other studies should be
conducted similar to this one utilizing children's self-
reports of life events and allow the children to rate their
perception of the events. Assessing coping strategies used
by the children for achieving bonadaptation would be

4,5

beneficial. Studying the impact on children of ongoing
education would also be useful.
~SUMMARY

The results of this study indicate that chronically ill
children and their families experience more life events than
comparison families and chronically ill children tend to
have a more positive perception of the events. Advance
Practice Nurses in primary care settings can assist families
and children in the adaptation and management of chronic
illness through education and the development of problem
solving skills and coping strategies by helping the family
to redefine the situation positively in order to avoid a
crisis. Awareness by the APN of community resources and
support is important to facilitate bonadaptation and
decrease the additional burdens.associated with having a
chronic illness. Understanding that each family is unique
in their approach to stress management, problem solving, and
coping skills and knowing when the family is ready to
receive assistance and counseling is also important for the

APN.

47

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51

APPENDIX A

Life Experiences Questionnaire

Life Experience: Questionnaire

This is a list of things that can happen to families. Each thi
Please pawn x in the box next to the things that have hap

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m 9004
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52

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APPENDIX B

UCRIHS Approval Letter

 

(fflCEU’
RESEARCH
AND
GRADUATE
STUDIES

517/355-le
FAXtSIII‘32-IIII

nrwmumsawnnmw
nushmuuuonnq
(mammnkun

Afluamsummwamm
smwmunnonmuov

    
 
  

MICHIGAN STATE

UNIVERSITY

 

April 27, 1998

To: Linda S ence.
A230 Li e Sc1ences

RE: IRES: 98-277
TITLE: FREQUENCY OF LIFE EVENTS AS REPORTED BY
CHRONICALLY ILL CHILDRER
REVISION REQUESTED: N/A
CATEGORY: l-E
APPROVAL DATE: 04/23/98

The university Committee on Research Involving Human Sub ects'(UCRIflS)
review of this project is complete. I am pleased to adv se that the
rights and welfare of the human subjects appear to be adequately

rotected and methods to obtain informed consent-are a ropriate.
gherefore. the UCRIHs approved this project and any rev sions listed
mve s '

RBNBHIL: UCRIRS approval is valid for one calendar year. beginning with
the approval date shown above. Investigators planni to
continue a project beyond one year must use the green renewal
form (enclosed with t e original a proval letter or when a
project is renewed) to seek u ate certification. There is a
marimum of four such expedit renewals ssible. Investigators
wishi to continue a roject beyond tha time need to submit it
again or complete rev ew.

RKVISIONS: UCRIHS must review any changes in rocedures involving human
subjects, rior to initiation of e change. If this is done at
the time o renewal. please use the green renewal form. To
revise an approved protocol at an other time during the year
send your written request to the CRIBS Chair, requesting revised
approval and referencin the project's IRE # and title. Include
in ur request a descr ption of the change and any revised
ins ruments. consent forms or advertisements that are applicable.

snootsus/
cannons: Should either of the followin arise during the course of the
work. investi ators must noti UCRIHS romptly: 11) roblems
(unexpected s de effects comp aints, e c.) involv ng uman
subjects or (2) changes in the research environment or new
information indicating greater risk to the human sub ects than
existed when the protocol was previously reviewed approved.

If we can be of any future help please do not hesitate to contact us
at (517)355-2180 or sax I517I4 5- 171.

Sincerely,

   

vid 8. “right, Ph.D.
UCRIHS Chair

DEW:bed

cc: Artie L. Roth

71

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